Wow! I watched an episode of Oprah today about a child that has Schizophrenia and her family. Watching this family and all they have to do just to keep their daughter safe from her self- injurious behavior as well as their infant son made me feel so sad for them. I know our experience with Alex is/was not nearly what they are going through but I felt I related to them on a few levels.
When Alex was first diagnosed, I felt a sense of relief. They said they felt the same when their daughter was diagnosed. For us it led to action. We fought hard and found the therapies/schools that worked best for him and our family. I am so grateful that now I feel that we have come through our rough times. They talked about peoples judgements and feeling alone. All of these things I feel or have felt or go back and forth with often. I pray that they will find the right resources to help their child and their family.
Something I have been wrestling with lately is my feeling of loneliness with my kids being in school. It finally hit me one day that the reason I feel this sense of loss or maybe just plain boredom each day while they are at school is because those years after Alex was first diagnosed were not your "normal" raising children as a stay-at-home mom years. I was constantly managing his routines, therapies, payment of therapies, worries of the expense of therapies, taking him to therapies, taking care of Simone...there wasn't a lot of down time. I feel like I had just accepted my role and that mom will most likely never have her "old life" back as a working woman outside of the home...I was a paralegal in my previous life...surrounded by prominent people in society, and what goes without saying....adults. Anyway, I feel that I had recently wrapped my head around this concept of my new life...I guess you could say "I accepted it" when now it seems that the kids, and unbelievably Alex, are doing great with school. Yes they still need me but not as much as before. Maybe I can have a life outside of being mom to these kids.
So, now I search for what that life will look like. Can I find a part-time job that will allow me to work with other adults, stimulate my brain, allow me to make some financial contribution to our family, be close by in case I am needed at the kids' school, etc...??? I am now on a mission to find just that. I hope it is out there. If I find this special place of employment, I know that they will be a true blessing to me.
On a sad note....I remember in my early research on Autism that back when they were initially "labeling" Autism...it was thought that it was childhood Schizophrenia!!! That was hard to read. I had an aunt who suffered from Schizophrenia and sadly, due to my ignorance and mostly following the adults that I knew that didn't model good behavior towards her, I know I didn't treat her kindly. We have come a long way in understanding all of these mental/neurological disorders and they all have things in common and affect families in common ways. I recently saw a new statistic that Autism now affects 1 in every 91 children...WOW! We still have more work to do in understanding the cause and there is never enough compassion for these families.
Tuesday, October 6, 2009
Friday, September 18, 2009
I look to you
So...as usual it has been a while since I have posted anything :( We have been working on getting our school routines down and I am sooooo pleased with Alex and his transition into 2nd grade. He continues to amaze me.
His teacher this year is having the kids color in each day the discipline color they were for the day before they head home on a calendar in their folder. For instance, they start out at green and then if they get a warning they are yellow, bad is red and black is really bad. If they do really great for the day they can move up and the move up from green is blue. Alex this month has had all green days and one blue day!!! What I like most about this is that when he leaves in the morning I can say "have a green day" and he smiles. When he gets home he is so excited to show me his paper. I can't get much detail out of him about his day but this is something that he does talk to me about.
Simone is adjusting well too. Although this week we did have an e-mail from her teacher that she had written "I hat(e) Alex" on the board. I haven't noticed lately and even during the summer as many questions about his behaviors or how he is different as I did at the end of last school year. I think that even though they are at the same school the fact that they are on different floors (not right across the hall from each other) makes a difference. Anyway, her teacher talked to her about Alex and then of course I talked to her when she got home. I think she was a little shocked that I knew what happened at school - mom has eyes and ears everywhere!
This week I watched Oprah's 2 part interview with Whitney Houston. Now, I grew up listening to her songs and of course we all know her trials (which are no where near the same as mine) but the interview really touched me. I had mentioned in one of my previous blogs about how people say things to you when you go through a difficult time and often I think use God and the prayer thing too much. It happened to me and I really feel like it caused me to step away some from my relationship with God. Anyway, her new song "I look to you" is about God and how she looked to him for strength as she went through her trials. Also her song "I didn't know my own strength" is also amazing and I feel that I can relate to those words. At one point I found my self just crying as I listened to her talk to Oprah then when I downloaded the songs I really started crying. I feel like her talking about relying on God could be backed up by the fact that she had gone through something horrific in her life. While I was downloading the songs and crying, my husband comes home and saw me a mess...yes I was having a moment!
If you get a chance, please listen to those songs. She has an amazing gift.
His teacher this year is having the kids color in each day the discipline color they were for the day before they head home on a calendar in their folder. For instance, they start out at green and then if they get a warning they are yellow, bad is red and black is really bad. If they do really great for the day they can move up and the move up from green is blue. Alex this month has had all green days and one blue day!!! What I like most about this is that when he leaves in the morning I can say "have a green day" and he smiles. When he gets home he is so excited to show me his paper. I can't get much detail out of him about his day but this is something that he does talk to me about.
Simone is adjusting well too. Although this week we did have an e-mail from her teacher that she had written "I hat(e) Alex" on the board. I haven't noticed lately and even during the summer as many questions about his behaviors or how he is different as I did at the end of last school year. I think that even though they are at the same school the fact that they are on different floors (not right across the hall from each other) makes a difference. Anyway, her teacher talked to her about Alex and then of course I talked to her when she got home. I think she was a little shocked that I knew what happened at school - mom has eyes and ears everywhere!
This week I watched Oprah's 2 part interview with Whitney Houston. Now, I grew up listening to her songs and of course we all know her trials (which are no where near the same as mine) but the interview really touched me. I had mentioned in one of my previous blogs about how people say things to you when you go through a difficult time and often I think use God and the prayer thing too much. It happened to me and I really feel like it caused me to step away some from my relationship with God. Anyway, her new song "I look to you" is about God and how she looked to him for strength as she went through her trials. Also her song "I didn't know my own strength" is also amazing and I feel that I can relate to those words. At one point I found my self just crying as I listened to her talk to Oprah then when I downloaded the songs I really started crying. I feel like her talking about relying on God could be backed up by the fact that she had gone through something horrific in her life. While I was downloading the songs and crying, my husband comes home and saw me a mess...yes I was having a moment!
If you get a chance, please listen to those songs. She has an amazing gift.
Tuesday, August 25, 2009
Value? Goals?
I had a book club meeting at my house last night and we spent some time talking about what our goals were when we were in high school versus what they are now and what we consider to be value in our life. Hmmmm. I remember in my year book writing that I was going to be a "paralegal in a large law firm". So, I've been there, done that....does that mean I have accomplished my goal? Are there more goals to be accomplished, have they changed?
We had a wonderful summer, the kids and I. Really, I can't complain at all. A part of me feels like I deserve it damn it! Another part of me feels like now that things are going well with Alex that I should move on and reclaim those "goals".
What are those goals? Do I have any? Are my kids' still the main goal to focus on? Should I go back to work? Do I have an identity now that they are becoming less dependent on me?
Lots of questions. Not sure of the answers right now. I feel a little guilt even thinking that I should be focusing on myself. Some mothers of Autistic children (and other children with disabilities) don't ever get the opportunity to ask the question of whether they should focus on their goals because their lives are so taken up by their children. I should feel lucky but am having a hard time with even those thoughts. I know that when I was in high school and later when I got married, I never thought that my goal/plan would include having an Autistic child. I almost feel like that has put my goals/life on hold when really it has just taken it in a different path for a season.
Now, what is value? When I think back to all the "earning" potential that was lost by staying home almost 9 years with my children - WOW! That sure is a lot of money. Now, I know most of that would have went to child care, clothes for work, other work expenses, but that still seems like a lot of "value" lost. The big BUT here is the value of my son and the growth he made during the time I was able to be home with him. There is no monetary value I can place on that. Hearing people say "he's Autistic?" puts the priceless exclamation on that!!
I hope to keep focusing on that over these next few months while I try to come to terms with where I/we have been over the last 9 years.
Is there a new season approaching?
We had a wonderful summer, the kids and I. Really, I can't complain at all. A part of me feels like I deserve it damn it! Another part of me feels like now that things are going well with Alex that I should move on and reclaim those "goals".
What are those goals? Do I have any? Are my kids' still the main goal to focus on? Should I go back to work? Do I have an identity now that they are becoming less dependent on me?
Lots of questions. Not sure of the answers right now. I feel a little guilt even thinking that I should be focusing on myself. Some mothers of Autistic children (and other children with disabilities) don't ever get the opportunity to ask the question of whether they should focus on their goals because their lives are so taken up by their children. I should feel lucky but am having a hard time with even those thoughts. I know that when I was in high school and later when I got married, I never thought that my goal/plan would include having an Autistic child. I almost feel like that has put my goals/life on hold when really it has just taken it in a different path for a season.
Now, what is value? When I think back to all the "earning" potential that was lost by staying home almost 9 years with my children - WOW! That sure is a lot of money. Now, I know most of that would have went to child care, clothes for work, other work expenses, but that still seems like a lot of "value" lost. The big BUT here is the value of my son and the growth he made during the time I was able to be home with him. There is no monetary value I can place on that. Hearing people say "he's Autistic?" puts the priceless exclamation on that!!
I hope to keep focusing on that over these next few months while I try to come to terms with where I/we have been over the last 9 years.
Is there a new season approaching?
Monday, August 3, 2009
one more thing...
Just got a text from my pastor. She said the kids are doing great..."no worries"!
:)
:)
Camp...
Yesterday evening I left my kids at their first overnight church camp! OMG! They are only 6 and 8! OMG! Alex has Autism! Can you believe it??? I thought I would just break out crying the whole way home but instead this overwhelming sense of finally making it came over me. I have had so many compliments this summer on Alex and how well he is doing. Most people don't even know that he has Autism until I tell them. I did call one of Alex's therapists/tutors on the way home from camp to tell her about dropping him off at camp. Okay so more on the camp...
Our church reserved this camp for the week so only people from our church are there along with the camp counselors that are there the whole summer to help with all the camps that come - even our pastor is there! Anyway...we got there a little early so we could walk around the camp and meet one of the counselors that is a special ed teacher! God is GOOD! Then the camp got busy as more and more people that we knew showed up. The kids, especially Simone, were excited to see kids they knew. They will be at camp from Sunday evening until Wednesday evening. The comments Alex made when I dropped him off made me laugh...
"Hey, hey, hey. We're here" (from 321 Penguins show)
"This is going to be the best camp ever"
"Okay, mommy, if tomorrow is sunny I'll put sunscream on" (this from the kids who ironically screams when I put it on so the fact that he calls it "sunscream" kills me)
"Mommy, can I get a shower tonight on Sunday?"
It is a little hard for me to be home alone especially since my husband is in India - yes the country of India! He was supposed to take off work while the kids were at camp so we could spend time together but obviously that is not happening. So, I am home completely alone! This morning I went for a run and then I am headed to our library to volunteer. After that I think I will hang out at our local coffee shop and read then do some shopping. I'm trying to see this time as a break and time for me but it is awful lonely :(
Anyway....I finally put a profile picture on and it is of Alex sitting on his bunk at camp. I hope it makes you smile as much as it does me!
Our church reserved this camp for the week so only people from our church are there along with the camp counselors that are there the whole summer to help with all the camps that come - even our pastor is there! Anyway...we got there a little early so we could walk around the camp and meet one of the counselors that is a special ed teacher! God is GOOD! Then the camp got busy as more and more people that we knew showed up. The kids, especially Simone, were excited to see kids they knew. They will be at camp from Sunday evening until Wednesday evening. The comments Alex made when I dropped him off made me laugh...
"Hey, hey, hey. We're here" (from 321 Penguins show)
"This is going to be the best camp ever"
"Okay, mommy, if tomorrow is sunny I'll put sunscream on" (this from the kids who ironically screams when I put it on so the fact that he calls it "sunscream" kills me)
"Mommy, can I get a shower tonight on Sunday?"
It is a little hard for me to be home alone especially since my husband is in India - yes the country of India! He was supposed to take off work while the kids were at camp so we could spend time together but obviously that is not happening. So, I am home completely alone! This morning I went for a run and then I am headed to our library to volunteer. After that I think I will hang out at our local coffee shop and read then do some shopping. I'm trying to see this time as a break and time for me but it is awful lonely :(
Anyway....I finally put a profile picture on and it is of Alex sitting on his bunk at camp. I hope it makes you smile as much as it does me!
Monday, July 20, 2009
The best summer ever...
I feel bad to say again that it has been awhile since I have posted. Seems like I can't get my routine together this summer. Well, actually that isn't true...I have just been lazy about blogging.
This really has been the best summer ever for us. I can remember very vividly the anger I felt after Alex was diagnosed and finding that he would start school in March but then for the summer I was left to figure out what to do with him. I remember thinking he would be getting used to a schedule/routine then it would all change for 3 months! This is why I am sooooo in favor of year round school.
Finding programming for the summer for a preschooler was basically impossible. There are a lot of "camps" for school aged children but not for preschoolers. At this early stage (the first summer after being diagnosed) he really needed more therapy based programming and I was just having a hard time finding that. I mentioned before the Hahn-Hufford Center for Hope in Piqua, OH. They became my saving grace. We did 6 weeks of programming over the summer but the time commitment as his mom and with a toddler to take care of as well was a lot for me.
We struggled with each summer after that even taking him to Camp Allyn of Stepping Stones in Cincinnati (an hour and a half away) and staying with family while he attended their daycamp a few weeks through the summer. Last year we tried a YMCA daycamp where I worked. I was really searching for a program that he could attend about 3 days a week and the other days he would spend with me and his sister to help him understand what summer vacation was. Also, we had some extended school year programming (tutoring) with his teacher and I was trying to figure out when to fit that in. Well, the camp was for an entire week and I had to pay for the entire week whether he went or not. So, on a few of the days each week I would take him out early and have him meet with his teacher. This was hard to schedule and I am sure was confusing to my structured child as the days he saw her changed. Maybe this was good for him but I'm not sure.
This summer is a completely different story. The school we transferred to has a summer enrichment program (we call it "camp"). I sent both kids 3 days a week with the exception of a few weeks where I had the kids with me or we had other things planned. Once a week, his teacher has offered to take him and work on some skills he is lacking in anticipation of what will be required of him in second grade. This in itself makes me cry because she is doing this on her own (not through the school) and won't let me pay her. The camp has been very accepting of Alex and he is very excited to go each day. Simone is also enjoying it but quickly informed me that they days they aren't there (T/TH) is when the camp goes on field trips to places like the movies and putt putt golf, etc. So, this week I'm letting them go on Thursday so they can go on the big field trip to Cosi. To top it off, Alex's teacher is going too. This makes mom's anxiety level low :)
It has been quite expensive for us to send both kids 3 days a week. When we originally planned to do this I thought I would have a part-time job. Well, I don't. We are using our flexible spending account but still it is a lot. I'm thinking that we will just do the two days a week next week which would cost less and that way the kids can go on the field trips. The days they are going this year (M/W/F) are days the camp goes to the pool and I miss laying by the pool with my kids :) Or, who knows, maybe I'll have a job and they will go more next summer...you never know!
Quite a few people have commented to me on how much he has grown. My pastor (who in her past life was an occupational therapist) asked me specifically what was different between the school we are at now and the school we were at because she sees such a change in him. It is hard to say really because I totally loved his special ed teacher at our old school. Maybe it is because he was immediately included in a real 1st grade class for most of the day and "forced" to socialize in the classroom at our new school. Before we moved, he was kept a lot of the day in the special ed classroom but went to the 1st grade class for some of the day. I think the goal was to increase his time in the 1st grade classroom but we moved not long after school started so that didn't happen. Or, maybe it is because he is just having a growth socially. I feel that he often grows either socially or academically but not both at the same time. All I know is that I am loving our new school and the way they have approached Alex's education. Now, that being said...every year is different so we'll see what happens this year. I pray for the best!
This really has been the best summer ever for us. I can remember very vividly the anger I felt after Alex was diagnosed and finding that he would start school in March but then for the summer I was left to figure out what to do with him. I remember thinking he would be getting used to a schedule/routine then it would all change for 3 months! This is why I am sooooo in favor of year round school.
Finding programming for the summer for a preschooler was basically impossible. There are a lot of "camps" for school aged children but not for preschoolers. At this early stage (the first summer after being diagnosed) he really needed more therapy based programming and I was just having a hard time finding that. I mentioned before the Hahn-Hufford Center for Hope in Piqua, OH. They became my saving grace. We did 6 weeks of programming over the summer but the time commitment as his mom and with a toddler to take care of as well was a lot for me.
We struggled with each summer after that even taking him to Camp Allyn of Stepping Stones in Cincinnati (an hour and a half away) and staying with family while he attended their daycamp a few weeks through the summer. Last year we tried a YMCA daycamp where I worked. I was really searching for a program that he could attend about 3 days a week and the other days he would spend with me and his sister to help him understand what summer vacation was. Also, we had some extended school year programming (tutoring) with his teacher and I was trying to figure out when to fit that in. Well, the camp was for an entire week and I had to pay for the entire week whether he went or not. So, on a few of the days each week I would take him out early and have him meet with his teacher. This was hard to schedule and I am sure was confusing to my structured child as the days he saw her changed. Maybe this was good for him but I'm not sure.
This summer is a completely different story. The school we transferred to has a summer enrichment program (we call it "camp"). I sent both kids 3 days a week with the exception of a few weeks where I had the kids with me or we had other things planned. Once a week, his teacher has offered to take him and work on some skills he is lacking in anticipation of what will be required of him in second grade. This in itself makes me cry because she is doing this on her own (not through the school) and won't let me pay her. The camp has been very accepting of Alex and he is very excited to go each day. Simone is also enjoying it but quickly informed me that they days they aren't there (T/TH) is when the camp goes on field trips to places like the movies and putt putt golf, etc. So, this week I'm letting them go on Thursday so they can go on the big field trip to Cosi. To top it off, Alex's teacher is going too. This makes mom's anxiety level low :)
It has been quite expensive for us to send both kids 3 days a week. When we originally planned to do this I thought I would have a part-time job. Well, I don't. We are using our flexible spending account but still it is a lot. I'm thinking that we will just do the two days a week next week which would cost less and that way the kids can go on the field trips. The days they are going this year (M/W/F) are days the camp goes to the pool and I miss laying by the pool with my kids :) Or, who knows, maybe I'll have a job and they will go more next summer...you never know!
Quite a few people have commented to me on how much he has grown. My pastor (who in her past life was an occupational therapist) asked me specifically what was different between the school we are at now and the school we were at because she sees such a change in him. It is hard to say really because I totally loved his special ed teacher at our old school. Maybe it is because he was immediately included in a real 1st grade class for most of the day and "forced" to socialize in the classroom at our new school. Before we moved, he was kept a lot of the day in the special ed classroom but went to the 1st grade class for some of the day. I think the goal was to increase his time in the 1st grade classroom but we moved not long after school started so that didn't happen. Or, maybe it is because he is just having a growth socially. I feel that he often grows either socially or academically but not both at the same time. All I know is that I am loving our new school and the way they have approached Alex's education. Now, that being said...every year is different so we'll see what happens this year. I pray for the best!
Tuesday, June 16, 2009
Old acquaintances/friends
It has been a while since my last post. We have started summer break last week being our first full week. We have enjoyed the pool - Alex is getting so dark already. We've had some track meets and swim meets. My husband has started another stretch of traveling but we are hanging in there. While we are at track practices I have had an opportunity to visit with one of Alex's therapists (I mentioned her in previous posts) - Christine. She stops by occasionally to watch Alex practice and of course to talk with his mom. Although last night at practice Alex was soooo tired. The kids went to their first day of summer "camp". They played hard in the morning then walked to the pool, swam hard and walked home. Needless to say he was very tired and running wasn't what he wanted to do.
Last weekend I volunteered for our local Farmer's Market and ran into an old acquaintance, Penni. Penni was Alex's first Aide in Preschool. It was so nice to see her. What was even better was her story of how she is going to work for a health food/supplement store here in our town. She has been through the diet, detoxing, etc. that is often recommended for kids with Autism and is very knowledgeable. Through all her research and personal experience she has gained this knowledge and is switching her "career" to help others through this store. She said that she was so scared to have Alex as it was her first year as an aide. She didn't know anything about Autism. She was so wonderful with him and she said that she recognized things in Alex that her daughter had going on when she was growing up but they never knew what it was. I had mentioned to her about the diet, etc. and she said that was what got her to take a seminar class on it at an Autism convention and as they say, the rest is history! She then went through the diet and detoxing herself.
So amazing how you meet and touch people and you don't even realize it.
Last weekend I volunteered for our local Farmer's Market and ran into an old acquaintance, Penni. Penni was Alex's first Aide in Preschool. It was so nice to see her. What was even better was her story of how she is going to work for a health food/supplement store here in our town. She has been through the diet, detoxing, etc. that is often recommended for kids with Autism and is very knowledgeable. Through all her research and personal experience she has gained this knowledge and is switching her "career" to help others through this store. She said that she was so scared to have Alex as it was her first year as an aide. She didn't know anything about Autism. She was so wonderful with him and she said that she recognized things in Alex that her daughter had going on when she was growing up but they never knew what it was. I had mentioned to her about the diet, etc. and she said that was what got her to take a seminar class on it at an Autism convention and as they say, the rest is history! She then went through the diet and detoxing herself.
So amazing how you meet and touch people and you don't even realize it.
Wednesday, June 3, 2009
Acceptance
Acceptance. Wow...that is a big word. At my last therapy appointment she also talked about the grieving steps and how Acceptance is the step that often takes a long time to get there. I feel like at times I am there and at other times, I slip out of it. She feels that I have not fully gotten to through that stage. How does one accept that their child has a disability??
I have found myself lately, since we moved to this new town, introducing ourselves and talking about Alex and his Autism. Maybe it is because most people knew me when got his diangosis in our previous "town". Anyway, I also find myself on edge more as he gets older making sure that he isn't mistreated/misunderstood. I feel like I have to explain him more and that I can never let my guard down so to speak. Most people think that he just has odd behaviors or don't even notice his differences because they don't spend that much time with him but as his mother, I feel that I am always hyperaware of how people see him.
Simone has been asking a lot of questions about Alex and we had a chance to have a talk the other day. Saturday, we went to get a cake for my dad's 60th birthday and on our way back she started asking various things about Alex. We talked about what part of the body helps you make good decisions and behave. She said it was her brain. We then talked about some of the things Alex does that seems strange/weird or like he is misbehaving and how that was his brain not working right. We also talked about whether she needs to watch out for him at school or even ask his teacher how he is doing. She said she asks his teacher how he is doing so that she can tell me. I told her that she didn't need to do that as his teachers will do that and that she shouldn't worry about him at school. At the end of the conversation she said "mom, I'm sure glad we had our talk about Alex". We are hoping to continue these little talks on her terms and spend some quality time with her to make her feel special. I'm headed to school now to have lunch with her on her last day of kindergarten. I'm trying not to think about what we'll say/do when Alex starts asking questions about himself.
I have found myself lately, since we moved to this new town, introducing ourselves and talking about Alex and his Autism. Maybe it is because most people knew me when got his diangosis in our previous "town". Anyway, I also find myself on edge more as he gets older making sure that he isn't mistreated/misunderstood. I feel like I have to explain him more and that I can never let my guard down so to speak. Most people think that he just has odd behaviors or don't even notice his differences because they don't spend that much time with him but as his mother, I feel that I am always hyperaware of how people see him.
Simone has been asking a lot of questions about Alex and we had a chance to have a talk the other day. Saturday, we went to get a cake for my dad's 60th birthday and on our way back she started asking various things about Alex. We talked about what part of the body helps you make good decisions and behave. She said it was her brain. We then talked about some of the things Alex does that seems strange/weird or like he is misbehaving and how that was his brain not working right. We also talked about whether she needs to watch out for him at school or even ask his teacher how he is doing. She said she asks his teacher how he is doing so that she can tell me. I told her that she didn't need to do that as his teachers will do that and that she shouldn't worry about him at school. At the end of the conversation she said "mom, I'm sure glad we had our talk about Alex". We are hoping to continue these little talks on her terms and spend some quality time with her to make her feel special. I'm headed to school now to have lunch with her on her last day of kindergarten. I'm trying not to think about what we'll say/do when Alex starts asking questions about himself.
Friday, May 29, 2009
Twisted Thinking
Memorial Day weekend went pretty well although I have to say that the weekend before was almost as bad as Mother's Day weekend. I can't remember right off had what got me so upset that weekend but I experienced for the first time what I think was an anxiety/panic attack. I was just so overwhelmed by everything. Korey and I have had some major discussions about Alex and Simone. Seeing Alex with his peers makes us see where he is different (like at track meets). We wonder when he'll realize he is different as Simone is already asking so many questions about Alex. We are dealing with how we will talk with her about Alex. We have both cried a lot over this last month. Since I am home alone when the kids are at school, I find myself with too much time to think/fret/worry.
So, this needing to find myself let me to apply for a job at the school board offices in the district where my kids go...EEKK! I really would like a part time position but this position is full time!! Who knows if I'll even get it but I am getting more excited as the days go on. So, fingers crossed that I first get an interview for the job in the next week. On one of my bad days, I talked with my pastor and she talked with me about how I have lost my identity in all of this. I am not just Cara, mom to Alex who has Autism or mom to Simone. I need to find myself again. Maybe working would help with that...???
So, at therapy this week I talked about the job and the need to be busy with my therapist. I told her that I felt like I needed to be busy so I wouldn't have time to dwell on things. She said that if I just get busy and don't address my thoughts and feelings that I'll still have them...getting busy may help but it isn't the answer. So, here comes the twisted thinking thing. We worked on how I distort things a lot. Making things more than they are. Taking things people say to me too personally or in a way that they didn't mean. We talked about comments that people have made to me about Alex and why I was given him (by God). Some of the comments like "He sure is testing you" or "God doesn't give you more than you can handle"...etc...have been hard for me to hear. I honestly believe that people who say these things are either (1) marters (sp?) or (2) have never had something bad/tragic happen in their life. I believe those words would go away from their vocabulary very quickly if they had something happen to them.
So, we talked further of what those comments have meant to me and how they and this situation have affected my relationship with God. Deep down I know that God didn't give me Alex to teach me a lesson. I know I will grow and learn through the experiences I have raising him but I feel that him being on this earth to just teach me a lesson diminishes his value. I have not been able to focus on daily bible readings or even daily prayer. Not that I don't read the bible or pray but I find it hard to do it regularly. I still have questions and, as my therapist mentioned, I am still working through the grieving and haven't truly gotten to the acceptance part. I am hoping that once I get there I will be able to get back to a stronger relationship with God but I'll admit I am not there yet.
So, this needing to find myself let me to apply for a job at the school board offices in the district where my kids go...EEKK! I really would like a part time position but this position is full time!! Who knows if I'll even get it but I am getting more excited as the days go on. So, fingers crossed that I first get an interview for the job in the next week. On one of my bad days, I talked with my pastor and she talked with me about how I have lost my identity in all of this. I am not just Cara, mom to Alex who has Autism or mom to Simone. I need to find myself again. Maybe working would help with that...???
So, at therapy this week I talked about the job and the need to be busy with my therapist. I told her that I felt like I needed to be busy so I wouldn't have time to dwell on things. She said that if I just get busy and don't address my thoughts and feelings that I'll still have them...getting busy may help but it isn't the answer. So, here comes the twisted thinking thing. We worked on how I distort things a lot. Making things more than they are. Taking things people say to me too personally or in a way that they didn't mean. We talked about comments that people have made to me about Alex and why I was given him (by God). Some of the comments like "He sure is testing you" or "God doesn't give you more than you can handle"...etc...have been hard for me to hear. I honestly believe that people who say these things are either (1) marters (sp?) or (2) have never had something bad/tragic happen in their life. I believe those words would go away from their vocabulary very quickly if they had something happen to them.
So, we talked further of what those comments have meant to me and how they and this situation have affected my relationship with God. Deep down I know that God didn't give me Alex to teach me a lesson. I know I will grow and learn through the experiences I have raising him but I feel that him being on this earth to just teach me a lesson diminishes his value. I have not been able to focus on daily bible readings or even daily prayer. Not that I don't read the bible or pray but I find it hard to do it regularly. I still have questions and, as my therapist mentioned, I am still working through the grieving and haven't truly gotten to the acceptance part. I am hoping that once I get there I will be able to get back to a stronger relationship with God but I'll admit I am not there yet.
Thursday, May 21, 2009
TV Talk
I forgot to mention the first part of Mother's Day that had got me sad (maybe this was where it all started downhill). When we were at church and the kids were still in the service (they leave for classes after we sing), the Pastor asked if any of the kids wanted to say something about their mom. Alex is really into raising his hand to answer a question but doesn't often answer appropriately. So I am in the back of the church saying "please don't pick him", which makes me feel guilty in itself. Don't you know, she picks him. She tries to prompt him but he starts talking and it is a bunch of "TV talk". Somewhere in there was playing "kickball with my mom" but most of it was him talking the script of several Charlie Brown movies. Everyone in the service is smiling and kindof laughing at how cute he is. I was so sad inside. Then by the end of the service I was crying.
Cut to Tuesday of that week...he gets his prized "reading t-shirt" at school. He is excited beyond anything I have seen in a while. I had to force him to let me wash it and he waiting for it to be washed to put it in the dryer. I managed to pull him away from the house so we could go to the library while it dried but it nearly killed him. So we are at the library and I say "Alex, tell the librarian what you got at school today". He stands nice and straight (no fidgeting) and says "I went the the principal's office and got my reading t-shirt". It was amazing. Sometimes he is on and sometimes he isn't.
He has done very well with the track practices and even the big meet we went to this past weekend. However, at practice on Monday, one of our kids got a ribbon for winning a place in a field event. He was so upset that he didn't get a ribbon (why they don't have participation ribbons for all kids I don't know). So, he kept saying over and over that he wanted a ribbon on Wednesday. Well, we go to practice on Wednesday and of course knowing there wouldn't be a ribbon. He practices well but at the end has a meltdown over there not being a ribbon. On the way home he wanted me to stop at the "next exit" because there is a hospital and he could see the doctor because his heart was broken. Too cute! I have a feeling though that he won't forget about this ribbon and next week we'll have the same issue...I hope not!
Cut to Tuesday of that week...he gets his prized "reading t-shirt" at school. He is excited beyond anything I have seen in a while. I had to force him to let me wash it and he waiting for it to be washed to put it in the dryer. I managed to pull him away from the house so we could go to the library while it dried but it nearly killed him. So we are at the library and I say "Alex, tell the librarian what you got at school today". He stands nice and straight (no fidgeting) and says "I went the the principal's office and got my reading t-shirt". It was amazing. Sometimes he is on and sometimes he isn't.
He has done very well with the track practices and even the big meet we went to this past weekend. However, at practice on Monday, one of our kids got a ribbon for winning a place in a field event. He was so upset that he didn't get a ribbon (why they don't have participation ribbons for all kids I don't know). So, he kept saying over and over that he wanted a ribbon on Wednesday. Well, we go to practice on Wednesday and of course knowing there wouldn't be a ribbon. He practices well but at the end has a meltdown over there not being a ribbon. On the way home he wanted me to stop at the "next exit" because there is a hospital and he could see the doctor because his heart was broken. Too cute! I have a feeling though that he won't forget about this ribbon and next week we'll have the same issue...I hope not!
Monday, May 18, 2009
Sweet Silver Lining
So, I found this song called "Sweet Silver Lining". It's about searching for the sweet silver lining when things happen. The lyrics that get me are...
"so many people are looking to me To be strong and to fight But I’m just surviving...Most days I try my best To put on a brave face But inside my bones are cold And my heart breaks"
I've had a few people mention to me lately that I "put on a good face/front". I feel that I have been faking it lately. I had a really rough period just after Alex was diagnosed and I feel that I am in another rough period now. Things are just so hard for me to work though right now. I seem to make the littlest things into big things. I take everything personally and am offended easily by others words/actions/lack of actions. I know that things could be much worse but I still struggle daily and I think over the last two weeks I have cried every day!
I know there are silver linings to all this but it seems very hard to identify them or look for them right now as I'm just trying to survive.
I feel that I have to get to an "emergency state" for anyone to realize that I need help. This is where I feel I have been these last few weeks. I think people see me as a strong/independent person that doesn't need help so therefore I must be fine. However, I feel that since I don't often ask for help...that when I do ask it should trigger a response like "hey, I should help her because she asked". Instead I feel like I have to beg for help or get to that "emergency" level before I get help. I guess what I wish is that someone would just see the need....ha! Who am I fooling with that wish! I know also that I have a controlling personality and often it is hard for me to let go and let others.
Alex ran in his first track meet this weekend. It was so fun to watch but we were not prepared at all for this! He is a part of our local Y's track club and we had NO idea that the track clubs around were so much bigger and more serious than ours. We didn't even have uniforms in yet while other clubs had nice uniforms, warm up suits, coaches uniforms, running spikes, etc. Only 4 of our kids showed up for the meet while other teams had hundreds. We were definitely David versus Goliath. Anyway, Alex ran the 100 and 400 and he did great. He had a good time. Dad had tears in his eyes when he ran the 100. At first I thought that was just pride in the tears but later after I had a major meltdown on Sunday, he explained to me that he was feeling pride but also felt a bit of saddness about Alex's disability and just everything about that. Alex has no idea that he is different and that he was at a disadvantage in the race (not completley because of his disability but anyway). My husband has cried twice in the last two weeks so we are both having problems dealing with Alex and what we have to go through daily and ongoing. What will our future hold? What will his future hold? So sad whan your husband cries too.
My stomach has been a mess, I've had crying episodes where I just can't stop. My heart races and I feel like I can't catch my breath. I hope this passes soon.
"so many people are looking to me To be strong and to fight But I’m just surviving...Most days I try my best To put on a brave face But inside my bones are cold And my heart breaks"
I've had a few people mention to me lately that I "put on a good face/front". I feel that I have been faking it lately. I had a really rough period just after Alex was diagnosed and I feel that I am in another rough period now. Things are just so hard for me to work though right now. I seem to make the littlest things into big things. I take everything personally and am offended easily by others words/actions/lack of actions. I know that things could be much worse but I still struggle daily and I think over the last two weeks I have cried every day!
I know there are silver linings to all this but it seems very hard to identify them or look for them right now as I'm just trying to survive.
I feel that I have to get to an "emergency state" for anyone to realize that I need help. This is where I feel I have been these last few weeks. I think people see me as a strong/independent person that doesn't need help so therefore I must be fine. However, I feel that since I don't often ask for help...that when I do ask it should trigger a response like "hey, I should help her because she asked". Instead I feel like I have to beg for help or get to that "emergency" level before I get help. I guess what I wish is that someone would just see the need....ha! Who am I fooling with that wish! I know also that I have a controlling personality and often it is hard for me to let go and let others.
Alex ran in his first track meet this weekend. It was so fun to watch but we were not prepared at all for this! He is a part of our local Y's track club and we had NO idea that the track clubs around were so much bigger and more serious than ours. We didn't even have uniforms in yet while other clubs had nice uniforms, warm up suits, coaches uniforms, running spikes, etc. Only 4 of our kids showed up for the meet while other teams had hundreds. We were definitely David versus Goliath. Anyway, Alex ran the 100 and 400 and he did great. He had a good time. Dad had tears in his eyes when he ran the 100. At first I thought that was just pride in the tears but later after I had a major meltdown on Sunday, he explained to me that he was feeling pride but also felt a bit of saddness about Alex's disability and just everything about that. Alex has no idea that he is different and that he was at a disadvantage in the race (not completley because of his disability but anyway). My husband has cried twice in the last two weeks so we are both having problems dealing with Alex and what we have to go through daily and ongoing. What will our future hold? What will his future hold? So sad whan your husband cries too.
My stomach has been a mess, I've had crying episodes where I just can't stop. My heart races and I feel like I can't catch my breath. I hope this passes soon.
Wednesday, May 13, 2009
That last post was heavy. But I think I have mentioned before that this Autism stuff is just that...heavy! I went back and read over my past posts and I feel that I need to elaborate more on this schooling...where he's been and where he is now. I'm pretty tired today so I'll save that for next time. Since Mother's Day, I have felt very sad and down. I'm hoping this will pass but there are still some tough issues to work through.
The issue on my plate for tomorrow is a meeting with the school counselor to talk about Simone. Poor little Simone. She is so understanding and gives into Alex a lot. However, her level of understanding is what we are working on. Over the past 2 years she has asked some general questions about Alex but it seems that since they have been in school together this year that her questions are more frequent and she is wanting to know more about why he is different. She is also trying to understand why we do things or let Alex do things that she doesn't get or isn't allowed to do. A perfect example is:
I've finished reading the book "The Explosive Child". It talks in the book about having 3 baskets. One basket is issues/rules that you will not waiver on and are willing to send your "Explosive Child" into a meltdown over...example would be a safety issue. There is another basket with things that you want to get to the child understand but the child may not be there yet or you need to work on it for a while. Then there are things in the third basket that you just let go. Not worth it. Other children would get these things but in the big picture these battles are not ones you need to waist your energy on. An example of basket No. 3 for us is that Alex has an extreme sense of direction. When in the car, he wants us to go home a certain way from the Y so he can go over the train tracks in town 2 times. So, he tells us when to turn, etc. Anyway, I was joking with him on the way home that I wasn't going to turn left, instead I wanted to go straight. He starts chanting, left, left, left and Simone starts chanting, straight, straight, straight. Anyway, if I had gone straight it would have turned into a meltdown and it just isn't worth it. When we got home, Simone wanted to talk to me in "quiet". She started crying and said that she didn't understand why we always go the way Alex wants to.
So there you have it....how to talk to a 6 year old about Autism will be the topic of the day tomorrow.
I often wonder when Alex will start to figure out that he is "different". Okay...one issue at a time please!
The issue on my plate for tomorrow is a meeting with the school counselor to talk about Simone. Poor little Simone. She is so understanding and gives into Alex a lot. However, her level of understanding is what we are working on. Over the past 2 years she has asked some general questions about Alex but it seems that since they have been in school together this year that her questions are more frequent and she is wanting to know more about why he is different. She is also trying to understand why we do things or let Alex do things that she doesn't get or isn't allowed to do. A perfect example is:
I've finished reading the book "The Explosive Child". It talks in the book about having 3 baskets. One basket is issues/rules that you will not waiver on and are willing to send your "Explosive Child" into a meltdown over...example would be a safety issue. There is another basket with things that you want to get to the child understand but the child may not be there yet or you need to work on it for a while. Then there are things in the third basket that you just let go. Not worth it. Other children would get these things but in the big picture these battles are not ones you need to waist your energy on. An example of basket No. 3 for us is that Alex has an extreme sense of direction. When in the car, he wants us to go home a certain way from the Y so he can go over the train tracks in town 2 times. So, he tells us when to turn, etc. Anyway, I was joking with him on the way home that I wasn't going to turn left, instead I wanted to go straight. He starts chanting, left, left, left and Simone starts chanting, straight, straight, straight. Anyway, if I had gone straight it would have turned into a meltdown and it just isn't worth it. When we got home, Simone wanted to talk to me in "quiet". She started crying and said that she didn't understand why we always go the way Alex wants to.
So there you have it....how to talk to a 6 year old about Autism will be the topic of the day tomorrow.
I often wonder when Alex will start to figure out that he is "different". Okay...one issue at a time please!
Monday, May 11, 2009
Happy?? Mother's Day
I'm going to start off with the positives. I woke up with my cheerful kids saying "Happy Mother's Day" and bringing presents to me in bed. Simone made some presents and wrapped them herself. My husband then got out the presents he bought for me from the kids and himself. He did a great job...a Vera Bradley bag and a yoga mat bag. Anyway, he fixed everyone breakfast and then we went to church.
Church....hmmmmm...I remember last year being hard on me sitting in church thinking about everything. Like, why am I a mother of an Autistic child? Why doesn't my own mother help me more? Why doesn't my mother-in-law help me more? Why do I feel like I can't talk to either mother about Alex and Autism without hearing platitudes? I need them to be real. How do I forgive them for continued disappointments? Are my expectations too high? Is all this my fault?
So, the sermon this year was about Ruth and Naomi. How Ruth stood by Naomi when she was bitter. Yes, I am bitter. Very, very bitter. And do I have a Ruth? I would have to say my sister and my sister-in-law but still no one really truly understands. Who really should be my Ruth?
Okay the final song plays at church and I am crying. I go to pick up my children (my husband was helping count $$). Alex is having a meltdown over forgetting his bible and not being able to get a prize from the teacher. We go out to the car where I think the bibles are and of course they aren't there. He proceeds to have a fit and obsesses about not having his bible. The teacher was great and let him have a prize anyway....I do this all the time...try to appease him to just make the situation better. We then went into the church so I could take in food that was in the car and he can't find his prize (left it somewhere)....starts melting down again. I loose it and spank him in church! All the while my husband has no clue as he is counting.
We go to the car and drive to pick up my medical transcription tapes. Alex is screaming in the car so I turn around and spank him again. Feeling just awful on this Mother's Day.
We get back to the church and out comes my husband who is thinking we are headed to lunch to continue our wonderful Mother's Day...Ha! I drive us home crying.
When we get home I start with some angry cleaning of the house. Simone is sick with a fever. I have to cancel my therapy appointment for today since she can't go to school. We had a 5 hour meeting scheduled with Alex's teachers/school staff this morning. Korey had a work commitment he didn't think he could get out of but decided he needed to so he is going to the school this morning for the meeting. I am really happy about this as I don't think I could have emotionally dealt with that today. Also, I feel like all this Autism stuff is on me and I really needed him to go.
We end the night with Korey and I have a nice dinner and Simone and I have ice cream at Dairy Queen and I feel a little better.
After the kids are in bed the real fun begins (not what you are thinking). Korey and I have a deep discussion about Alex, Simone, my feelings, his feelings, Simone's questions about Alex, why our families aren't real about how hard this. I cried and cried. He went to check on the kids before coming to bed. He seemed to take a while and when he came down he was crying. We cry again then go to bed.
So, this morning I got Alex ready for school and he wanted to go in early with Korey to play in his classroom. I started crying when I watched them pull away...still crying now.
Church....hmmmmm...I remember last year being hard on me sitting in church thinking about everything. Like, why am I a mother of an Autistic child? Why doesn't my own mother help me more? Why doesn't my mother-in-law help me more? Why do I feel like I can't talk to either mother about Alex and Autism without hearing platitudes? I need them to be real. How do I forgive them for continued disappointments? Are my expectations too high? Is all this my fault?
So, the sermon this year was about Ruth and Naomi. How Ruth stood by Naomi when she was bitter. Yes, I am bitter. Very, very bitter. And do I have a Ruth? I would have to say my sister and my sister-in-law but still no one really truly understands. Who really should be my Ruth?
Okay the final song plays at church and I am crying. I go to pick up my children (my husband was helping count $$). Alex is having a meltdown over forgetting his bible and not being able to get a prize from the teacher. We go out to the car where I think the bibles are and of course they aren't there. He proceeds to have a fit and obsesses about not having his bible. The teacher was great and let him have a prize anyway....I do this all the time...try to appease him to just make the situation better. We then went into the church so I could take in food that was in the car and he can't find his prize (left it somewhere)....starts melting down again. I loose it and spank him in church! All the while my husband has no clue as he is counting.
We go to the car and drive to pick up my medical transcription tapes. Alex is screaming in the car so I turn around and spank him again. Feeling just awful on this Mother's Day.
We get back to the church and out comes my husband who is thinking we are headed to lunch to continue our wonderful Mother's Day...Ha! I drive us home crying.
When we get home I start with some angry cleaning of the house. Simone is sick with a fever. I have to cancel my therapy appointment for today since she can't go to school. We had a 5 hour meeting scheduled with Alex's teachers/school staff this morning. Korey had a work commitment he didn't think he could get out of but decided he needed to so he is going to the school this morning for the meeting. I am really happy about this as I don't think I could have emotionally dealt with that today. Also, I feel like all this Autism stuff is on me and I really needed him to go.
We end the night with Korey and I have a nice dinner and Simone and I have ice cream at Dairy Queen and I feel a little better.
After the kids are in bed the real fun begins (not what you are thinking). Korey and I have a deep discussion about Alex, Simone, my feelings, his feelings, Simone's questions about Alex, why our families aren't real about how hard this. I cried and cried. He went to check on the kids before coming to bed. He seemed to take a while and when he came down he was crying. We cry again then go to bed.
So, this morning I got Alex ready for school and he wanted to go in early with Korey to play in his classroom. I started crying when I watched them pull away...still crying now.
Wednesday, May 6, 2009
Wow! This past week has been full of anxiety for mom. Of course all this happened just after going to another therapist appointment where she wants me to start working on relaxation techniques. Ha! It started with my husband being sent to Mexico on Monday (April 27) with all this Swine Flu talk. OMG! He wasn't going near the "outbreak" so his company said it was okay to go. Once he got there they that they shouldn't have sent him. I was so worried he wouldn't get home with all the talk about closing the border. He did finally come home on Wednesday night but we weren't finished. Get this...he wasn't allowed to go to work!! So he worked from home until this Monday (May 4th)!! In the meantime, we were "watching" for symptoms. Everything turned out fine and he went back to work but boy was that all stressful.
To top it off I found out that on Tuesday that Alex was carried out of gym class by the principal. So, that resulted in him loosing his Wii privileges until Friday. His teacher started using sticks in the classroom (not to spank him with but to take away when he is bad). So far since mid-week last week he has only had one taken away. They used a similar method at his previous school.
His behavior at school totally amazes me because I picked him up for a dentist appointment on Wednesday and he was the best EVER at the dentist. He also did really well at piano lessons that day. Not sure what is going on at school.
I just read through a study about depression and anxiety in families with children on the Autism Spectrum. That is so ironic don't you think? Anyway, I found it interesting too that mothers responded to the survey 10 to 1 over the fathers. Seems like most of the stress of raising a child with Autism falls on the mother. I'm also reading a book called "The Explosive Child". I'm about halfway through and can see Alex a lot in this book. I'm hoping it will give some help to the team at school when we meet next week to work on his detailed plan. We are meeting for 4 hours!!! After that I head to a therapy appointment - I'm sure I'll need it!
Simone has been doing awesome at her swim team practices. I am sooooo proud of her. She is fast and often passes other kids. Alex has had one track club practice and it was really cute to watch. I hope his practice goes well tonight although it looks like we will be practicing indoors.
I have been enjoying our patio and deck and reading a lot. One thing I haven't done a lot of lately is scrapbooking. I need to work on that but something is holding me back....hmmm??? My goal for May is to get that done!
To top it off I found out that on Tuesday that Alex was carried out of gym class by the principal. So, that resulted in him loosing his Wii privileges until Friday. His teacher started using sticks in the classroom (not to spank him with but to take away when he is bad). So far since mid-week last week he has only had one taken away. They used a similar method at his previous school.
His behavior at school totally amazes me because I picked him up for a dentist appointment on Wednesday and he was the best EVER at the dentist. He also did really well at piano lessons that day. Not sure what is going on at school.
I just read through a study about depression and anxiety in families with children on the Autism Spectrum. That is so ironic don't you think? Anyway, I found it interesting too that mothers responded to the survey 10 to 1 over the fathers. Seems like most of the stress of raising a child with Autism falls on the mother. I'm also reading a book called "The Explosive Child". I'm about halfway through and can see Alex a lot in this book. I'm hoping it will give some help to the team at school when we meet next week to work on his detailed plan. We are meeting for 4 hours!!! After that I head to a therapy appointment - I'm sure I'll need it!
Simone has been doing awesome at her swim team practices. I am sooooo proud of her. She is fast and often passes other kids. Alex has had one track club practice and it was really cute to watch. I hope his practice goes well tonight although it looks like we will be practicing indoors.
I have been enjoying our patio and deck and reading a lot. One thing I haven't done a lot of lately is scrapbooking. I need to work on that but something is holding me back....hmmm??? My goal for May is to get that done!
Wednesday, April 29, 2009
So...I've let a few days go by without blogging. Since my last blog I turned 35! My son (and our family) survived a carnival night called "Fun Fair" at the kids' school. My parents took the kids overnight on Friday and my in-laws on Saturday giving my husband and I some MUCH, MUCH, MUCH needed time alone! So, all that being good, I still wasn't ready to be called on Monday for therapy. They had a cancellation and I said sure I'll come. So, I only had a few hours to have anxiety about going - ha!
Anyway, we spent this session talking about the "plan". It was kind of like and IEP goal setting session. Goal #1: I will not get mad at my parents or parent-in-laws 4 out of 5 times - that just cracks me up! So, even though the parents had the kids this weekend. I was still frustrated with the whole process of getting that to happen...comments made to me...etc.
So, this week I'm supposed to work on relaxation techniques. Of course they are basic ones I know but don't always practice. The therapist also spent a lot of time typing up notes on her computer/writing out our session note. I felt like a lot of the time I spent watching her type. Anyway, maybe it will get better after this preliminary stuff is set.
Okay, back to Fun Fair. My husband was supposed to fly in at 5:15 and arrive at our house by 6. Ha! His flight had problems. I got a text that said "engine won't start...going back to gate". Okay seriously not something you say to a wife who has been diagnosed with "generalized anxiety disorder". Anyway, that left me and the kids and my mother to head to the Fun Fair. I was glad she was there because she stayed with my daughter and I hung with Alex. By the time Korey got there Alex was showing signs of over stimulation so he took him home. Let him get a shower and then my mom headed home with my daughter and got the kids in the car to head off to her house. That left me at the Fun Fair to help as they were in need of volunteers for concessions. I met a nice lady while working (we just moved here in October so I'm still meeting people). Anyway, the principal started to do the raffle basket winner announcements just after 8:00. I was so glad that Alex wasn't there. He has the worst time understanding the whole raffle thing and gets so upset when he doesn't win.
So, now that we know how this Fun Fair thing goes, we will be even more prepared for next year but I was so glad that we had no issues!!!
My husband and I worked in the yard on Saturday it was hot but beautiful on Saturday and Sunday. I ordered the weather especially for my birthday weekend :) We went for a run/walk together through town. He fixed me dinner from start to finish...grilling steaks, etc. on Saturday. We went to the Y on Sunday and pumped some iron then he met his mother to get the kids giving me some time to work on transcription in peace and quiet!
I seriously couldn't have asked for a better weekend.
Well done Honey!!
Anyway, we spent this session talking about the "plan". It was kind of like and IEP goal setting session. Goal #1: I will not get mad at my parents or parent-in-laws 4 out of 5 times - that just cracks me up! So, even though the parents had the kids this weekend. I was still frustrated with the whole process of getting that to happen...comments made to me...etc.
So, this week I'm supposed to work on relaxation techniques. Of course they are basic ones I know but don't always practice. The therapist also spent a lot of time typing up notes on her computer/writing out our session note. I felt like a lot of the time I spent watching her type. Anyway, maybe it will get better after this preliminary stuff is set.
Okay, back to Fun Fair. My husband was supposed to fly in at 5:15 and arrive at our house by 6. Ha! His flight had problems. I got a text that said "engine won't start...going back to gate". Okay seriously not something you say to a wife who has been diagnosed with "generalized anxiety disorder". Anyway, that left me and the kids and my mother to head to the Fun Fair. I was glad she was there because she stayed with my daughter and I hung with Alex. By the time Korey got there Alex was showing signs of over stimulation so he took him home. Let him get a shower and then my mom headed home with my daughter and got the kids in the car to head off to her house. That left me at the Fun Fair to help as they were in need of volunteers for concessions. I met a nice lady while working (we just moved here in October so I'm still meeting people). Anyway, the principal started to do the raffle basket winner announcements just after 8:00. I was so glad that Alex wasn't there. He has the worst time understanding the whole raffle thing and gets so upset when he doesn't win.
So, now that we know how this Fun Fair thing goes, we will be even more prepared for next year but I was so glad that we had no issues!!!
My husband and I worked in the yard on Saturday it was hot but beautiful on Saturday and Sunday. I ordered the weather especially for my birthday weekend :) We went for a run/walk together through town. He fixed me dinner from start to finish...grilling steaks, etc. on Saturday. We went to the Y on Sunday and pumped some iron then he met his mother to get the kids giving me some time to work on transcription in peace and quiet!
I seriously couldn't have asked for a better weekend.
Well done Honey!!
Wednesday, April 22, 2009
So my little thinking brain was hard at work last night. I feel like Ellen Degeneres when she talks about how she is always thinking although I don't come up with the funny things she does. So, I digress....This therapy thing will work this time and I feel encouraged by yesterday although a hard cry does make you very sleepy. I had a hard time functioning the rest of the day/evening.
When I first went to therapy back when Alex was being diagnosed...Simone wasn't sleeping and my husband had had his seizure. The therapist diagnosed me with Depression...duh! Of course with figuring out what therapies Alex needed then subsequently getting him to the therapies/scheduling, etc. Oh and Korey lost his license for 3 months...me going to therapy appointments was out of the question. So, she put me on an anti-depressant that helped but I don't like medication so I only took it for about a year. I'm not opposed to taking it when needed. I personally wanted to not take it as I felt I was at a better place. So I went off it for a few years then started having some major ups and downs (mostly hormonal) so my OBGYN put me back on birth control. ARE YOU KIDDING ME....my husband has had a vasectomy! Seriously though that has helped a lot and I think if I wasn't on that I would be back on an anti-depressant.
So, that is a little background that brings me to yesterday. She did the "assessment" and said that at this point she would diagnose me with "generalized anxiety disorder". The secondary diagnosis is "depression NOS". Ha! How many parents of Autistic children get the PDD/NOS diagnosis. The "NOS" means "not otherwise specified". I find that ironic. She said that if I wasn't on the birth control that the underlying depression would be stronger and probably warrant that as a primary diagnosis. She also reminded me that I have been dealing with this for over 5 years - ouch!
The last therapist I went to let me talk/vent and I think I needed that but I also feel like I needed a plan of action. At my next appointment she said we would work on just that...how I can change my thinking/worrying, etc. So I am hopeful!
Now, I want to go back to the early therapy time for Alex. Some of you reading this feel like you may have been one of those people giving me platitudes. I don't mean to be so blunt but when anyone is going through a hard time they do not hear things the way you mean them. Most of my issues with the platitudes have to deal with people who I feel should be helping us more so when I hear the platitudes it just makes me upset. So many of you have been there for me over these last 5 years.
Therapists are awesome...
My sister is my sounding board....
My sister-in-law is my sounding board and also our free housing when needed for summer camps...
My best friend from college is another sounding board....
And many other friends....
Wow! Looks like I've needed some sounding boards! Again, why I'm in therapy :)
So, when we started this intensive 6 week program at the Piqua Center. I was scared of Christine. Christine if you are reading this you already know this. She was Alex's neuroeducation teacher that he would see for about a half hour then later an hour. She is the bomb and helped him so much over the 3 years he was there. I remember him crying and her taking him "sternly" with her and I felt just awful as a parent when he misbehaved. Oh and the time he pooped on her pants - OMG! I grew to appreciate (that isn't even a big enough word) what Christine was able to do with Alex. I am SO grateful that we are also still in touch.
Alex also had "floor" work for about an hour each time he went. The therapists would work on patterning and tactile exercises with Alex (read about it more on their website www.rcnd.org as I cannot explain it correctly). Oh how he screamed and cried the first 4 days. He grew to love it and had a famous saying of "one more time" in a cute Alex voice that the therapists can imitate :)
Alex also had water therapy. Basically it was like private swim lessons with a twist. He had to listen to direction all the while totally obsessed with pouring water or seeing water fall when he flapped his hands. Water was very overstimulating for him. Jason was just awesome and because of him going to the pool in the summer is so much fun for us. I have heard stories about parents of children with Autism that have had to fish (no pun intended - maybe I am funny like Ellen) their kids out of ponds. Regular swim lessons don't work for these kids so having this therapy was such a blessing.
Now, during the "floor" work I was supposed to help Alex with the program. Most of the time, though (and thankfully) they had enough help and he often didn't want me there. This was such a blessing as I really enjoyed my time with books/magazines/journaling and sometimes napping! I especially loved it when they got the new building and the nice navy leather couch! I remember when we first started and Mrs. Hahn saw me sitting at the table while Alex was in therapy. She said she believed that the caregiver should get time to themselves. Oh how true!
Now the biggest stress I think during this time was finding someone to watch Simone for me while I went to therapy. I relied a lot of friends. I didn't have the family support I needed during this time. I don't think I even did the relying on friends very well. Looking back I think that I relied too much on friends and didn't show my appreciation well. Some of those friendships didn't last or make it through this time and that saddens me. I think this is also why I have a hard time relying on friends and family currently. I feel like I should have to ask or maybe should ask and I hope to work through this again in therapy!
So, thankfully we had this Piqua Center, music therapy in the home as well as preschool. Now what is "recommended" is 40 hours a week of intensive therapy such as ABA. When I researched the cost I was just blown away. So many of these families were scheduling round the clock therapist to come into their home. The cost to the families was $20K-40K. Often wiping out retirement accounts, taking out second mortgages, etc. Not to mention the toll on the marriage. I read a story that talked about the divorce rate in families with special needs children being over 80%. Wow! We spent an average of $7000/year the first 4 years. That was a struggle for us but we made it through. I couldn't imagine if we had to spend more and I couldn't imagine if Alex was more severely Autistic.
But...what did we do in the summer months when there wasn't school...??? We continued with a few days a week of the Piqua Center. However, he needed more structure on those off days. I remember feeling hopeless that so many summer "camps" were for older/school-aged children. It was so hard to find something for preschoolers. Then I heard of Stepping Stones in Cincinnati (about an hour and a half away). I can't remember honestly how I heard about it. They have a summer camp, Camp Allyn, in Batavia, Ohio, which ironically is less than 15 minutes from my sister-in-law's house. So, we spent a few summers going to camp there. I remember we would go for several weeks each summer.
The first time I went to observe, I just cried to my sister-in-law. I still couldn't believe that I was having to take my child to a special needs camp. She was there for me so much during those summers and I can't thank her enough.
Okay...I think I need to go treat myself to a fancy coffee at the coffee shop and read a good book. This Autism stuff is heavy.
When I first went to therapy back when Alex was being diagnosed...Simone wasn't sleeping and my husband had had his seizure. The therapist diagnosed me with Depression...duh! Of course with figuring out what therapies Alex needed then subsequently getting him to the therapies/scheduling, etc. Oh and Korey lost his license for 3 months...me going to therapy appointments was out of the question. So, she put me on an anti-depressant that helped but I don't like medication so I only took it for about a year. I'm not opposed to taking it when needed. I personally wanted to not take it as I felt I was at a better place. So I went off it for a few years then started having some major ups and downs (mostly hormonal) so my OBGYN put me back on birth control. ARE YOU KIDDING ME....my husband has had a vasectomy! Seriously though that has helped a lot and I think if I wasn't on that I would be back on an anti-depressant.
So, that is a little background that brings me to yesterday. She did the "assessment" and said that at this point she would diagnose me with "generalized anxiety disorder". The secondary diagnosis is "depression NOS". Ha! How many parents of Autistic children get the PDD/NOS diagnosis. The "NOS" means "not otherwise specified". I find that ironic. She said that if I wasn't on the birth control that the underlying depression would be stronger and probably warrant that as a primary diagnosis. She also reminded me that I have been dealing with this for over 5 years - ouch!
The last therapist I went to let me talk/vent and I think I needed that but I also feel like I needed a plan of action. At my next appointment she said we would work on just that...how I can change my thinking/worrying, etc. So I am hopeful!
Now, I want to go back to the early therapy time for Alex. Some of you reading this feel like you may have been one of those people giving me platitudes. I don't mean to be so blunt but when anyone is going through a hard time they do not hear things the way you mean them. Most of my issues with the platitudes have to deal with people who I feel should be helping us more so when I hear the platitudes it just makes me upset. So many of you have been there for me over these last 5 years.
Therapists are awesome...
My sister is my sounding board....
My sister-in-law is my sounding board and also our free housing when needed for summer camps...
My best friend from college is another sounding board....
And many other friends....
Wow! Looks like I've needed some sounding boards! Again, why I'm in therapy :)
So, when we started this intensive 6 week program at the Piqua Center. I was scared of Christine. Christine if you are reading this you already know this. She was Alex's neuroeducation teacher that he would see for about a half hour then later an hour. She is the bomb and helped him so much over the 3 years he was there. I remember him crying and her taking him "sternly" with her and I felt just awful as a parent when he misbehaved. Oh and the time he pooped on her pants - OMG! I grew to appreciate (that isn't even a big enough word) what Christine was able to do with Alex. I am SO grateful that we are also still in touch.
Alex also had "floor" work for about an hour each time he went. The therapists would work on patterning and tactile exercises with Alex (read about it more on their website www.rcnd.org as I cannot explain it correctly). Oh how he screamed and cried the first 4 days. He grew to love it and had a famous saying of "one more time" in a cute Alex voice that the therapists can imitate :)
Alex also had water therapy. Basically it was like private swim lessons with a twist. He had to listen to direction all the while totally obsessed with pouring water or seeing water fall when he flapped his hands. Water was very overstimulating for him. Jason was just awesome and because of him going to the pool in the summer is so much fun for us. I have heard stories about parents of children with Autism that have had to fish (no pun intended - maybe I am funny like Ellen) their kids out of ponds. Regular swim lessons don't work for these kids so having this therapy was such a blessing.
Now, during the "floor" work I was supposed to help Alex with the program. Most of the time, though (and thankfully) they had enough help and he often didn't want me there. This was such a blessing as I really enjoyed my time with books/magazines/journaling and sometimes napping! I especially loved it when they got the new building and the nice navy leather couch! I remember when we first started and Mrs. Hahn saw me sitting at the table while Alex was in therapy. She said she believed that the caregiver should get time to themselves. Oh how true!
Now the biggest stress I think during this time was finding someone to watch Simone for me while I went to therapy. I relied a lot of friends. I didn't have the family support I needed during this time. I don't think I even did the relying on friends very well. Looking back I think that I relied too much on friends and didn't show my appreciation well. Some of those friendships didn't last or make it through this time and that saddens me. I think this is also why I have a hard time relying on friends and family currently. I feel like I should have to ask or maybe should ask and I hope to work through this again in therapy!
So, thankfully we had this Piqua Center, music therapy in the home as well as preschool. Now what is "recommended" is 40 hours a week of intensive therapy such as ABA. When I researched the cost I was just blown away. So many of these families were scheduling round the clock therapist to come into their home. The cost to the families was $20K-40K. Often wiping out retirement accounts, taking out second mortgages, etc. Not to mention the toll on the marriage. I read a story that talked about the divorce rate in families with special needs children being over 80%. Wow! We spent an average of $7000/year the first 4 years. That was a struggle for us but we made it through. I couldn't imagine if we had to spend more and I couldn't imagine if Alex was more severely Autistic.
But...what did we do in the summer months when there wasn't school...??? We continued with a few days a week of the Piqua Center. However, he needed more structure on those off days. I remember feeling hopeless that so many summer "camps" were for older/school-aged children. It was so hard to find something for preschoolers. Then I heard of Stepping Stones in Cincinnati (about an hour and a half away). I can't remember honestly how I heard about it. They have a summer camp, Camp Allyn, in Batavia, Ohio, which ironically is less than 15 minutes from my sister-in-law's house. So, we spent a few summers going to camp there. I remember we would go for several weeks each summer.
The first time I went to observe, I just cried to my sister-in-law. I still couldn't believe that I was having to take my child to a special needs camp. She was there for me so much during those summers and I can't thank her enough.
Okay...I think I need to go treat myself to a fancy coffee at the coffee shop and read a good book. This Autism stuff is heavy.
Tuesday, April 21, 2009
Hmmmm....Had my first appointment with my third therapist (yes I have tried this 3 times now). Its been over 5 years since Alex was diagnosed and I still have problems dealing with the anxiety and depression that comes with everything. So, I'm promising myself that I will now focus on this and work through my many issues and the issues I have with other people's issues :)
We had a rough morning today. Alex got invited to a birthday party for a boy from school this weekend but we have plans so he can't go. So, he was upset last night and again this morning about not being able to go. I gave a heads up to the teacher and she said he mentioned it when he got to school but was soon distracted and moved on. Thank God!
One of the things people have said to me (many times) when I talk about Alex's issues is "typical kids do that too". Okay...seriously....that doesn't help. Yes I know that other kids have meltdowns or are affected but noise or fight with their siblings or want their shoes tight, etc., etc. Alex just takes it to whole other level and unless you are living with a child with Autism....keep you mouth shut! Sorry...I just had to say it. I have received a lot of platitudes from people that just rub me the wrong way. I know a lot of you are just trying to think of something nice to say but the old saying "actions speak louder than words" applies here. Do something thoughtful...don't say something that you think is thoughtful.
So, there you have it...a perfect example of why I am in therapy! I'm also hoping this blog can become a form of therapy for me.
Where was I on Alex. Oh, school. I have to say that once we got him into a structured school program, I felt relieved. I also felt guilty (and still do). These people know what to do for him and I didn't/don't. He does so well at school (with the exception of one school that I'll discuss later). He started preschool the day after he turned 3. He got to ride that bus (it wasn't a short bus either). He loved the bus and still does. He started going 4 days a week M/T/W/TH in the mornings. We would round out the week with music therapy in home and a trip to the "Piqua Center" on Friday mornings.
He did really well in the preschool program offered by the County but he probably had the class format memorized the first day. We found when he was eligible for Kindergarten (by age) that he probably could have handled it academically but his social skills were still lacking. So, we asked the school district for help in programing. They "tested" him for Pre-K. What!!?? There is a test for Pre-K?? I thought if you weren't going to Kindergarten you went to Pre-K. Anyway, they said he wasn't eligible and all they could do was put him in another preschool class (he had been with the same teacher for 2+years). Now, I knew he could handle more but we went with it. In addition to the other preschool class through the County, we enrolled him in some afternoons at our church's preschool hoping the additional structure would help. That school I mentioned above...this is it! They just weren't willing to make modifications to assist Alex. This was not a special needs preschool. However, by law they are not allowed to discriminate. So there were many things going on here. We decided (only after a few months) that both programs were not working for Alex. He needed a more challenging environment as well as modifications for him to succeed.
We took him out of both programs and right after Christmas break he started the Nicholas School Kindergarten Program 5 full days a week in Piqua.
More on that experience next!
We had a rough morning today. Alex got invited to a birthday party for a boy from school this weekend but we have plans so he can't go. So, he was upset last night and again this morning about not being able to go. I gave a heads up to the teacher and she said he mentioned it when he got to school but was soon distracted and moved on. Thank God!
One of the things people have said to me (many times) when I talk about Alex's issues is "typical kids do that too". Okay...seriously....that doesn't help. Yes I know that other kids have meltdowns or are affected but noise or fight with their siblings or want their shoes tight, etc., etc. Alex just takes it to whole other level and unless you are living with a child with Autism....keep you mouth shut! Sorry...I just had to say it. I have received a lot of platitudes from people that just rub me the wrong way. I know a lot of you are just trying to think of something nice to say but the old saying "actions speak louder than words" applies here. Do something thoughtful...don't say something that you think is thoughtful.
So, there you have it...a perfect example of why I am in therapy! I'm also hoping this blog can become a form of therapy for me.
Where was I on Alex. Oh, school. I have to say that once we got him into a structured school program, I felt relieved. I also felt guilty (and still do). These people know what to do for him and I didn't/don't. He does so well at school (with the exception of one school that I'll discuss later). He started preschool the day after he turned 3. He got to ride that bus (it wasn't a short bus either). He loved the bus and still does. He started going 4 days a week M/T/W/TH in the mornings. We would round out the week with music therapy in home and a trip to the "Piqua Center" on Friday mornings.
He did really well in the preschool program offered by the County but he probably had the class format memorized the first day. We found when he was eligible for Kindergarten (by age) that he probably could have handled it academically but his social skills were still lacking. So, we asked the school district for help in programing. They "tested" him for Pre-K. What!!?? There is a test for Pre-K?? I thought if you weren't going to Kindergarten you went to Pre-K. Anyway, they said he wasn't eligible and all they could do was put him in another preschool class (he had been with the same teacher for 2+years). Now, I knew he could handle more but we went with it. In addition to the other preschool class through the County, we enrolled him in some afternoons at our church's preschool hoping the additional structure would help. That school I mentioned above...this is it! They just weren't willing to make modifications to assist Alex. This was not a special needs preschool. However, by law they are not allowed to discriminate. So there were many things going on here. We decided (only after a few months) that both programs were not working for Alex. He needed a more challenging environment as well as modifications for him to succeed.
We took him out of both programs and right after Christmas break he started the Nicholas School Kindergarten Program 5 full days a week in Piqua.
More on that experience next!
Monday, April 20, 2009
So, Alex did well at school on Friday...much better than Thursday. Sometimes we just don't know what causes his misbehavior. It is so hard to get detail/information out of him on how he is feeling or what is going on in his little brain. I am so grateful though that the teachers/administrators are willing to work with him. Makes be happy to know he is in good hands. As I write this, he is still up...it is almost 10:00...we have been struggling with getting him to go to sleep lately...hope this doesn't cause problems tomorrow.
Today I met with my Representative to the Ohio House. In a previous blog I mentioned how we had NO insurance coverage for therapy for Alex. Well, Ohio is trying to pass a bill to require private insurance companies to cover therapy for Autism. Now, I have strong feelings about government being too involved in the private sector. That being said...there is really no excuse for an insurance company to not cover these children. We are not expecting full coverage. We know that there are deductibles, copays, limited number of visits, etc. However, some of these families cannot provide services for their children at the cost (for 1 hour of Occupational Therapy it was over $100 at Children's Hospital). So, we were told that if Alex had a physical problem with his ears or mouth that caused a speech delay we would get 20 visits a year for speech therapy. Since he had a "developmental" disorder this coverage was 0. Why is that the case? Also, I heard from a mother at my support group last night that has coverage for her child through her husband's new work insurance. His old insurance didn't cover therapy but the new insurance does. She said that it doesn't cover everything they need but at least they get 20 visits. I just don't understand!
It was nice to talk to my representative and to have him see our personal story/side. Not to mention that I felt like I was doing something good today.
Now, what if insurance is covering therapies...??? I wonder what therapies would be covered. This is of concern for us because we utilized a wonderful organization in Piqua, Ohio called the Hahn-Hufford Center for Hope/Rehabilitation Center for Neurological Development and The Nicholas School. This is a non-profit organization that provides therapies for patients with neurological disorders. Now this isn't your traditional speech and occupational therapies. So, would private insurance consider this an out-of-network service? Anyway, the cost of these services for us was so worth the 30 minute drive one way and the time commitment. Alex participated in the rehab program for 3 years. His growth was amazing during this time. He started with a 6 week intensive program that then went down to 2 days a week then finally to 1 day a week as he was getting more involved with school. The work they do there is just so amazing I find it hard to put into words.
Alex had so many sensory problems but by the time he was done with the program he would walk/play in sand at the beach!!! Now to appreciate the greatness of this....he would NOT walk on wet pavement even with shoes on before this. He didn't like to get his clothing wet...wouldn't get messy...had severe sound sensitivity...didn't like tags in his clothes. He still struggles with loud noises like at a basketball game (the buzzer) and is uncomfortable getting clothes wet at times but he has come a long, long way. Tags in clothes no longer bother him!!
He also attended the Nicholas School for 5 months and I'll talk more about that when we get to his schooling.
If anyone is reading this and lives near Piqua, Ohio, please check out the "Piqua Center"
www.rcnd.org
Because of this organization we were able to provide Alex with almost 3 hours of programming for less than $60 (at the time we were taking him this was the fee). It still cost our family over $8,000 per year during this time to provide services for Alex but compared to what other families were spending, we felt very fortunate. Research shows families spending $20,000 to $40,000 for their children per year.
I just can't imagine. My heart aches for them!
Today I met with my Representative to the Ohio House. In a previous blog I mentioned how we had NO insurance coverage for therapy for Alex. Well, Ohio is trying to pass a bill to require private insurance companies to cover therapy for Autism. Now, I have strong feelings about government being too involved in the private sector. That being said...there is really no excuse for an insurance company to not cover these children. We are not expecting full coverage. We know that there are deductibles, copays, limited number of visits, etc. However, some of these families cannot provide services for their children at the cost (for 1 hour of Occupational Therapy it was over $100 at Children's Hospital). So, we were told that if Alex had a physical problem with his ears or mouth that caused a speech delay we would get 20 visits a year for speech therapy. Since he had a "developmental" disorder this coverage was 0. Why is that the case? Also, I heard from a mother at my support group last night that has coverage for her child through her husband's new work insurance. His old insurance didn't cover therapy but the new insurance does. She said that it doesn't cover everything they need but at least they get 20 visits. I just don't understand!
It was nice to talk to my representative and to have him see our personal story/side. Not to mention that I felt like I was doing something good today.
Now, what if insurance is covering therapies...??? I wonder what therapies would be covered. This is of concern for us because we utilized a wonderful organization in Piqua, Ohio called the Hahn-Hufford Center for Hope/Rehabilitation Center for Neurological Development and The Nicholas School. This is a non-profit organization that provides therapies for patients with neurological disorders. Now this isn't your traditional speech and occupational therapies. So, would private insurance consider this an out-of-network service? Anyway, the cost of these services for us was so worth the 30 minute drive one way and the time commitment. Alex participated in the rehab program for 3 years. His growth was amazing during this time. He started with a 6 week intensive program that then went down to 2 days a week then finally to 1 day a week as he was getting more involved with school. The work they do there is just so amazing I find it hard to put into words.
Alex had so many sensory problems but by the time he was done with the program he would walk/play in sand at the beach!!! Now to appreciate the greatness of this....he would NOT walk on wet pavement even with shoes on before this. He didn't like to get his clothing wet...wouldn't get messy...had severe sound sensitivity...didn't like tags in his clothes. He still struggles with loud noises like at a basketball game (the buzzer) and is uncomfortable getting clothes wet at times but he has come a long, long way. Tags in clothes no longer bother him!!
He also attended the Nicholas School for 5 months and I'll talk more about that when we get to his schooling.
If anyone is reading this and lives near Piqua, Ohio, please check out the "Piqua Center"
www.rcnd.org
Because of this organization we were able to provide Alex with almost 3 hours of programming for less than $60 (at the time we were taking him this was the fee). It still cost our family over $8,000 per year during this time to provide services for Alex but compared to what other families were spending, we felt very fortunate. Research shows families spending $20,000 to $40,000 for their children per year.
I just can't imagine. My heart aches for them!
Thursday, April 16, 2009
Boy is my heart breaking right now. I'll have to hold on the "history" blogging right now as Alex is having a very rough day at school. We used to have a lot of issues with meltdowns at school but he has gotten better. Usually they are able to head off a meltdown or if he starts getting upset they can work through it or he can work through it before it gets bad. Well today I was called 3 times by his teacher. He has just refused to work. He had a meltdown in with his intervention specialist then a meltdown in gym...and gym is his favorite next to recess! So, what gives I am wondering? After the third call I headed to school (another reinforcement of why I am not working full time outside the home). Now he has been at this school for about 6 months since we moved here in October so I figure that he has done well not to have anything major happen with the transition to the new school. What being said, I went to the office and the principal (who I love) was there to greet me. Alex and his teacher were in his office so he talked to me first. They wanted him to try to work through it this afternoon. He would have to walk around recess with the principal and not play kickball...his absolute favorite thing to do. He seemed to be in a daze. He wasn't responding much and started to cry and told me he had a bad dream (he didn't mention that this morning). Anyway, I told him that he could have his own recess after school with mom if he started his day over and was good for the principal and his teacher. I'm hoping I didn't confuse him. We'll see.
So, I'm at home this afternoon not trying to think about it but keep thinking about his little face and those vacant eyes. Sometimes he acts out when he is getting sick (he had a little cough/froggy voice this morning) and other times we just can't figure it out. I am so grateful for the teachers and principals that are willing to work with him.
Okay....trying not to cry now. I'm going to figure something out that I can do to keep from thinking about this.
So, I'm at home this afternoon not trying to think about it but keep thinking about his little face and those vacant eyes. Sometimes he acts out when he is getting sick (he had a little cough/froggy voice this morning) and other times we just can't figure it out. I am so grateful for the teachers and principals that are willing to work with him.
Okay....trying not to cry now. I'm going to figure something out that I can do to keep from thinking about this.
Wednesday, April 15, 2009
Now, someone other than my neighbor (which by the way she is a professional although I said in my last post that the speech therapist testing Alex was the first professional to tell us he had red flags for Autism)....anyway, I digress....has told us that Alex has these "red flags". Wow! Are you kidding me. Our sweet boy who likes to entertain himself may be Autistic. Now what do we do? Well, that was when things got difficult....really difficult...okay really it just sucked!
We quickly found out that to get into a Developmental Pediatrician that specializes in Autism could be upwards of 9 months on a waiting list. So, I quickly went to work getting him on the waiting list for 2 Children's Hospitals - good thing I love paperwork and forms - that's my paralegal training kicking in. Then, we had to contact the local county MRDD - again more paperwork. Really, my first thought was that my kid could be going to school on a short bus. Now admit it, you have all made fun of the kids on the short bus. I'm wondering if I am now beging taught a BIG lesson. The county came in and did their "assessment" while we were waiting on the big waiting list to get our official diagnosis and they said they could start services for Alex with just a speech delay while pending diagnosis. Our school district was also brought in...again more paperwork...and I was introduced to the world of Special Education and IEPS. So, the county immediately sent in an in-home intervention specialist a few times a week until he turned 3. Then when he turned three he went to preschool 4 mornings a week (and thankfully got picked up in a regular bus although it did say "Montgomery County Transportation"). More on the preschool later.
Thankfully the lady from the county who did our assessment had remembered that a wonderful doctor had once worked at our local Children's Medical Center but had moved to Akron she thought. She said that he was really good at determining if a child met the Autism guidelines whey they were "mild", which was what she though Alex was. So, I immediately started researching this doctor and low and behold he was in Akron, OH....I got Alex on their weighting list and they had a lovely cancellation policy that got us in in about a month. Now we had to make a quick decision to drive up there one Thursday night for a Friday appointment but it was well worth it. We got the diganosis and continued on our waiting list near home so we could have a doctor closer to home monitor his progress but the diangosis was most important.
Now, how were we feeling about the diagnosis??? Interestingly I felt calm when he told me that Alex was on the "Autism Spectrum". I remember my husband not really knowing what that meant and that we had to have a conversation about that on the way home. Yes, Alex was Autistic but on the "spectrum" of Autism this doctor felt he was mild to moderate. I didn't do a lot of reasearch on Autism prior to our meeting. Maybe I just wasn't ready but when the doctor finally said he was on the "Spectrum" and recommended some books, I was ready to hear it and ready to learn more. I remember reading one book that talked about the "signs" or "red flags". Things that Alex did or was doing now really made sense now:
He had hand flapping when excited since 6 months of age.
He knew his letters and numbers before age 2.
He could use language to communicate his wants and needs but didn't have functional converational language (remember this was January we got the diagnosis and he was turning 3 in March).
He loved to watch doors open and close even before he could walk.
He loved to put things into slots/holes. He put a lot of cards into or fireplace fent holes and money in our tape player in the car.
He loved playing with books, looking through them for hours and watching the pages turn.
He loved playing with cars/trains but would get down to the level of the wheels and watch them turn.
He was always lovey and affectionate with us. However, if I was sitting on the ground he would run towards me but when he as a few steps away he would turn around and backup into my lap (this was in the book as a sign and I was blown away).
We didn't have the lack of eye contact like many Autistic children do but he did often seem like he was in his own world. I personally thought he was like his dad and was ignoring me!!!
I thought he played well with other kids but later found out out that he played "around" other kids not with them.
So I continued to plug away at finding services. We quickly found out the most frustrating thing I think of this whole process....our private medical insurance would not cover services (therapy) for Autism. Yes I am 100% serious. I remember having some severe breakdowns on the phone over this issue. Those poor insurance representatives I talked to. Oh my was I mean. The "diagnosis" process was covered but once he was labeled Autistic they said it was no longer a medical issue but a "developmental" issue. Can you believe it. How more medical can a disorder of the brain be??? I will write more on this issue later for sure.
So, after many, many phone calls I found that traditional speech and occupational therapies would cost us over $100 per session. Are you kidding me...where are we going to get this $$? Now, the county did have some funding but it was limited (we never received more that $900 a year which seems like a lot but not at $100/session). The preschool was free through the county but the extra therapy recommended was going to put us in the poor house. In addition, summers were going to be really hard. How do we start school in March and then a few months later have no structure? Oh, now I am seeing why my mental breakdown happened. I thought the first year with Simone was our hardest. This may have been the worst year.
Okay so I'm having a mental breakdown. Seriously suffering from depression. My son was just diagnosed with Autism. My husband had a seizure (thankfully after much testing) nothing serious was discovered. It was attributed to lack of sleep and stress! My daughter was still a handful. I felt like I had little extended family support through this whole thing (oh definitely more on that later). I then find out that our medical insurance will cover 100%...yes 100% of up to 20 visits in a year for me to seek counseling for mental health. ARE YOU F#@!@** KIDDING ME! I'm going mental mostly because we can't provide services to our child because you won't pay but you'll pay for me to get help for something you are partially contributing to. Seriously!
But wait....there's more....
We quickly found out that to get into a Developmental Pediatrician that specializes in Autism could be upwards of 9 months on a waiting list. So, I quickly went to work getting him on the waiting list for 2 Children's Hospitals - good thing I love paperwork and forms - that's my paralegal training kicking in. Then, we had to contact the local county MRDD - again more paperwork. Really, my first thought was that my kid could be going to school on a short bus. Now admit it, you have all made fun of the kids on the short bus. I'm wondering if I am now beging taught a BIG lesson. The county came in and did their "assessment" while we were waiting on the big waiting list to get our official diagnosis and they said they could start services for Alex with just a speech delay while pending diagnosis. Our school district was also brought in...again more paperwork...and I was introduced to the world of Special Education and IEPS. So, the county immediately sent in an in-home intervention specialist a few times a week until he turned 3. Then when he turned three he went to preschool 4 mornings a week (and thankfully got picked up in a regular bus although it did say "Montgomery County Transportation"). More on the preschool later.
Thankfully the lady from the county who did our assessment had remembered that a wonderful doctor had once worked at our local Children's Medical Center but had moved to Akron she thought. She said that he was really good at determining if a child met the Autism guidelines whey they were "mild", which was what she though Alex was. So, I immediately started researching this doctor and low and behold he was in Akron, OH....I got Alex on their weighting list and they had a lovely cancellation policy that got us in in about a month. Now we had to make a quick decision to drive up there one Thursday night for a Friday appointment but it was well worth it. We got the diganosis and continued on our waiting list near home so we could have a doctor closer to home monitor his progress but the diangosis was most important.
Now, how were we feeling about the diagnosis??? Interestingly I felt calm when he told me that Alex was on the "Autism Spectrum". I remember my husband not really knowing what that meant and that we had to have a conversation about that on the way home. Yes, Alex was Autistic but on the "spectrum" of Autism this doctor felt he was mild to moderate. I didn't do a lot of reasearch on Autism prior to our meeting. Maybe I just wasn't ready but when the doctor finally said he was on the "Spectrum" and recommended some books, I was ready to hear it and ready to learn more. I remember reading one book that talked about the "signs" or "red flags". Things that Alex did or was doing now really made sense now:
He had hand flapping when excited since 6 months of age.
He knew his letters and numbers before age 2.
He could use language to communicate his wants and needs but didn't have functional converational language (remember this was January we got the diagnosis and he was turning 3 in March).
He loved to watch doors open and close even before he could walk.
He loved to put things into slots/holes. He put a lot of cards into or fireplace fent holes and money in our tape player in the car.
He loved playing with books, looking through them for hours and watching the pages turn.
He loved playing with cars/trains but would get down to the level of the wheels and watch them turn.
He was always lovey and affectionate with us. However, if I was sitting on the ground he would run towards me but when he as a few steps away he would turn around and backup into my lap (this was in the book as a sign and I was blown away).
We didn't have the lack of eye contact like many Autistic children do but he did often seem like he was in his own world. I personally thought he was like his dad and was ignoring me!!!
I thought he played well with other kids but later found out out that he played "around" other kids not with them.
So I continued to plug away at finding services. We quickly found out the most frustrating thing I think of this whole process....our private medical insurance would not cover services (therapy) for Autism. Yes I am 100% serious. I remember having some severe breakdowns on the phone over this issue. Those poor insurance representatives I talked to. Oh my was I mean. The "diagnosis" process was covered but once he was labeled Autistic they said it was no longer a medical issue but a "developmental" issue. Can you believe it. How more medical can a disorder of the brain be??? I will write more on this issue later for sure.
So, after many, many phone calls I found that traditional speech and occupational therapies would cost us over $100 per session. Are you kidding me...where are we going to get this $$? Now, the county did have some funding but it was limited (we never received more that $900 a year which seems like a lot but not at $100/session). The preschool was free through the county but the extra therapy recommended was going to put us in the poor house. In addition, summers were going to be really hard. How do we start school in March and then a few months later have no structure? Oh, now I am seeing why my mental breakdown happened. I thought the first year with Simone was our hardest. This may have been the worst year.
Okay so I'm having a mental breakdown. Seriously suffering from depression. My son was just diagnosed with Autism. My husband had a seizure (thankfully after much testing) nothing serious was discovered. It was attributed to lack of sleep and stress! My daughter was still a handful. I felt like I had little extended family support through this whole thing (oh definitely more on that later). I then find out that our medical insurance will cover 100%...yes 100% of up to 20 visits in a year for me to seek counseling for mental health. ARE YOU F#@!@** KIDDING ME! I'm going mental mostly because we can't provide services to our child because you won't pay but you'll pay for me to get help for something you are partially contributing to. Seriously!
But wait....there's more....
Monday, April 13, 2009
Now, where was I? Oh...first there were two then there was three and then four... So, when I was growing up I always wanted to be at home with my kids (not working outside of the home)...driving a yuppie car, volunteering at church...maybe take golf or tennis lessons. Well, for the first 3 years after Alex was diagnosed it wasn't all that fun. There wasn't (and still isn't) a yuppie car, not much volunteering and I still don't know how to play tennis or golf! Most of this is because we didn't have the $$ for extra things like tennis and golf or the yuppie car. We quickly found out that health insurance that we pay almost $400 a month for doesn't consider Autism to be a "medical" issue. They consider it "developmental". So, once we finally got him diagnosed and set on our way to find services/therapies or him...boy did we find out that we would spend a lot of $$ on that child!
Sorry, I need to back up. How did we come to the diagnosis? Alex was our first child so we didn't really have a benchmark to go by for developmental milestones. Although I still believe that if Simone was our first child people would have said that we couldn't compared him to her because she's a girl. In fact we heard that a lot..."he's a boy" Einstein didn't talk until 3".... Anyway, our neighbor is a special ed intervention specialist/special ed teacher and she was the one to first mention something to me. Now that was extremely hard for her and for me. I still don't know when she first noticed something was wrong with Alex but when she did finally say something to me she knew it would end our friendship or at least stress it greatly. And stress it it did!! It took us about a year but we finally got back to each other.
Okay, so she tells me she thinks there is something wrong with Alex. Oh no she didn't just say that there was something with wrong with my child!!! We did the "right" thing and went to our pediatrician and wouldn't you know he said he didn't think there was a problem and that she was just a nosey neighbor. Great...that's what we wanted to hear. Then, since I worked at the Y and Alex had been in their childcare when I worked teaching classes since he as a baby they knew him well. One of their workers was going to college for special ed and said that she thought Alex wasn't responding to them and that he may have a hearing problem. Okay, back to the doctor we went. He still didn't think anything was wrong with Alex - "he isn't in the corner rocking so he isn't Autistis but I'll go ahead and order some hearing/speech tests since this is now not a nosey family member/neighbor questioning but someone else questioning his development". Needless to say he was WAY OFF!!! We later found out he didn't believe in the "spectrum" of Autism. The worst is that he to this day is missing diagnosing children. We have friends that see him and their child was in 2nd grade before they got a diagnosis....same doctor!!!! He should have his license taken away!!!!!!!
As we headed to the testing, we still thought that he was okay but boy was that first hearing/speech test an eye opener. He didn't do too well in the hearing test (very distracted/meltdown) and when we met with the speech therapist, all his "autistic traits" showed. I remember being in this small room where there was a clock and he started watching the second hand go around the clock and saying the number when it reached it...1...2....3...4.... Then she pulled out bubbles and he was so amazed and his hands flapped like he was going to take off. This is where we heard for the first time (from a professional) that our son had "red flags" for Autism.
Our next step was a sedated hearing test to rule out hearing problems. Boy that was fun...NOT! I can't even write about that!
The next step was trying to get into an autism specialist (developmental pediatrician). More on that process next.....
Sorry, I need to back up. How did we come to the diagnosis? Alex was our first child so we didn't really have a benchmark to go by for developmental milestones. Although I still believe that if Simone was our first child people would have said that we couldn't compared him to her because she's a girl. In fact we heard that a lot..."he's a boy" Einstein didn't talk until 3".... Anyway, our neighbor is a special ed intervention specialist/special ed teacher and she was the one to first mention something to me. Now that was extremely hard for her and for me. I still don't know when she first noticed something was wrong with Alex but when she did finally say something to me she knew it would end our friendship or at least stress it greatly. And stress it it did!! It took us about a year but we finally got back to each other.
Okay, so she tells me she thinks there is something wrong with Alex. Oh no she didn't just say that there was something with wrong with my child!!! We did the "right" thing and went to our pediatrician and wouldn't you know he said he didn't think there was a problem and that she was just a nosey neighbor. Great...that's what we wanted to hear. Then, since I worked at the Y and Alex had been in their childcare when I worked teaching classes since he as a baby they knew him well. One of their workers was going to college for special ed and said that she thought Alex wasn't responding to them and that he may have a hearing problem. Okay, back to the doctor we went. He still didn't think anything was wrong with Alex - "he isn't in the corner rocking so he isn't Autistis but I'll go ahead and order some hearing/speech tests since this is now not a nosey family member/neighbor questioning but someone else questioning his development". Needless to say he was WAY OFF!!! We later found out he didn't believe in the "spectrum" of Autism. The worst is that he to this day is missing diagnosing children. We have friends that see him and their child was in 2nd grade before they got a diagnosis....same doctor!!!! He should have his license taken away!!!!!!!
As we headed to the testing, we still thought that he was okay but boy was that first hearing/speech test an eye opener. He didn't do too well in the hearing test (very distracted/meltdown) and when we met with the speech therapist, all his "autistic traits" showed. I remember being in this small room where there was a clock and he started watching the second hand go around the clock and saying the number when it reached it...1...2....3...4.... Then she pulled out bubbles and he was so amazed and his hands flapped like he was going to take off. This is where we heard for the first time (from a professional) that our son had "red flags" for Autism.
Our next step was a sedated hearing test to rule out hearing problems. Boy that was fun...NOT! I can't even write about that!
The next step was trying to get into an autism specialist (developmental pediatrician). More on that process next.....
Saturday, April 11, 2009
In the beginning....there were two of us. My husband and I met the summer after my freshman year in college and the summer after he finished college (yes I married me a sugar daddy). We met at his hometown church....my hometown too but not my church. Anyway, he says I stalked him for a few weeks then he decided he would ask me out. I remember us spending a lot of time (hours) on the phone together while I was home that summer. I also remember that my dorm room phone for whatever reason was listed as a "local" number...I was in Cincinnati and he was in Springfield...it didn't charge us for long distance so our long phone conversations continued. I also remember for the first year we dated he gave me one rose for the first month, two roses or the second month and so on. So romatic he was!
We dated from 1993 through 1996, marrying on September 14, 1996. He continued to work in Springfield and I began working in Dayton for a "large" lawfirm after graduating. I worked full time until I had Alex in March, 2001. I had a hard time convincing my old fashioned firm to let me work part time and, even when they did agree, I didn't feel right going back there. I think I only ended up working part time for about a month after having Alex then made the decision to stay home full time.
Okay so this making the decision to stay home full time thing....I'm going to have to come back to that.
Our daughter, Simone was born in December, 2002 (yes that was less than 2 yers apart!!). Now, she was an AWFUL baby. Alex was such a wonderful baby for the 1st year of his life. Simone was so the opposite for her first year....cried all the time!!!
That first year with Simone and Alex being 2 was probably the hardest year of our marriage. It also lead to our famous "breast feeding pump argument". Korey and I don't argue much at all. However, the breast pump broke and, like any man, he thought he could fix the situation. Me with my raging hormones was so mad at him for trying to do anything. Wow....that was a bad time. Also the worst part was without good sleep for a full year it seemed...Korey ended up having a grand mal seizure at work. YES! This was a hard year for us!
Also, during this year we were starting to have people question Alex's development (between age 2 and 3). The story of how we came to the Autism diagnosis will continue....oh and also that deciding to stay home issue...
We dated from 1993 through 1996, marrying on September 14, 1996. He continued to work in Springfield and I began working in Dayton for a "large" lawfirm after graduating. I worked full time until I had Alex in March, 2001. I had a hard time convincing my old fashioned firm to let me work part time and, even when they did agree, I didn't feel right going back there. I think I only ended up working part time for about a month after having Alex then made the decision to stay home full time.
Okay so this making the decision to stay home full time thing....I'm going to have to come back to that.
Our daughter, Simone was born in December, 2002 (yes that was less than 2 yers apart!!). Now, she was an AWFUL baby. Alex was such a wonderful baby for the 1st year of his life. Simone was so the opposite for her first year....cried all the time!!!
That first year with Simone and Alex being 2 was probably the hardest year of our marriage. It also lead to our famous "breast feeding pump argument". Korey and I don't argue much at all. However, the breast pump broke and, like any man, he thought he could fix the situation. Me with my raging hormones was so mad at him for trying to do anything. Wow....that was a bad time. Also the worst part was without good sleep for a full year it seemed...Korey ended up having a grand mal seizure at work. YES! This was a hard year for us!
Also, during this year we were starting to have people question Alex's development (between age 2 and 3). The story of how we came to the Autism diagnosis will continue....oh and also that deciding to stay home issue...
Friday, April 10, 2009
Here I am. What to write? I love to read and am totally in awe of those that write fiction. For me, I think writing non-fiction would be easier as my life has so much that I could write about and my creative gene just isn't there. The reason I am starting this blog is to journal my days as a mom of a child with Autism. Oh how somedays I hate that now I am known as a mother of Alex, who has Autism. Some days I am in awe of him and how he has progressed since learning of his diagnosis in 2004. Other days I am so frustrated I could cry all day. As I write this I have my typical child standing next to me pouting that she can't color easter eggs RIGHT NOW! The eggs that I just remembered to boil are cooling. What a bad mother that I don't have them ready RIGHT NOW! Wow is she good at pouting. Okay, I think this is a good start. I'll elaborate on my story in future blogs.
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