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!
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