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?
Tuesday, August 25, 2009
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.
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