I want to dedicate this entry to my husband. Marriage is tough, raising kids is hard, living through the ups and downs of the economy is no fun. But- I feel lucky to have married a man who is so strong and full of love for his family. The divorce rate for most marriages is somewhere around 50-60%- for those with Autistic children- it is closer to 80%. Many fathers can't handle the stress of having an Autistic child- especially a son. Men have dreams of enjoying sporting events with their son- maybe even fathering a pro athlete. When those dreams are shattered it is hard to handle. My husband coaches 3 sports. Basketball is his passion. Robbie can't handle going to the games. A friend of his,a fellow coach with an Autistic son, told him he couldn't take his son to his games until he was 13 years old. I am just starting to understand how difficult this is for my husband. Yesterday Lexi and I painted our toes. Silly analogy- but what if I couldn't enjoy those moments with my daughter? If I couldn't look forward to the special things mothers and daughters do together- however trivial.
Rob and I have recently come to terms with the fact that our lives are different than others and we have to make adjustments accordingly. Not to say different is always bad- it can be good- just different. We spend a lot of time discussing options for Robbie- what's working, what's not working, different approaches, services etc. I am thankful to have a partner who is engaged in the process. I can't imagine going through this alone. So honey if you read this- I love you- but please stop leaving wet towels on the bed!!!!!
Thursday, May 27, 2010
Thursday, May 20, 2010
Continue to wonder?????
We've had an interesting few weeks. Robbie has been sleeping better (knock on wood) and we're again restricting his diet. I had hoped to see improvement but it is still touch and go. He'll have a horrible day at school- not participate, cry, hide under the table but will come home and be pleasant and interactive. He struggles with naming colors in his ABA sessions but when we play candy land- he names them all immediately- even purple. I continue to work with him and give him lots of praise and affection. I just feel like I'm missing something. There is a piece of the puzzle that I can't grasp. He has so much knowledge in his head but it's locked in and only comes out on occasion.
We are participating in a walk benefiting Autism Speaks on Saturday. A lot of family and friends will be there. I hope I'm not an emotional mess. It is so bitter sweet to see others with a similar diagnosis. You compare and hope for the best yet fear the worst. All we can is work really hard and continue to love. What else is there?
We are participating in a walk benefiting Autism Speaks on Saturday. A lot of family and friends will be there. I hope I'm not an emotional mess. It is so bitter sweet to see others with a similar diagnosis. You compare and hope for the best yet fear the worst. All we can is work really hard and continue to love. What else is there?
Thursday, May 13, 2010
The Bond Between Brother and Sister
I know most of my blogs have been pretty depressing. Here is a wonderful positive. The bond between siblings. Watching Robbie and Lexi interact has been and continues to be such a joy. She adores him- if that is a strong enough word- and he likes her as well. In the morning "Robbie- where's Robbie?, Robbie watch TV?, Robbie sleeping?" flow out of her mouth as I get her out of her crib. The minute Lexi sees Robbie- "Hi Robbie, Hi Robbie, Hi Robbie" will continue until he acknowledges her. It has become a good teaching tool for him. She will not stop until he says "hi Lexi". While I do have to remind him to say it- I'm confident it will come eventually because his sister is relentless. If he is sitting on the couch- she is right next to him. If comes to get a snack- she is right in front of him- usually pushing him out the way. If Robbie is napping on the couch Lexi will say " Sssssh, Robbie sleeping" and actually be quiet. Once in a while I do catch a glimpse of affection from him as well. Yesterday he turned a head lock into a hug-(progress) after she took what ever he was playing with. He does like it when she sits next to him or watches movies with him. He will laugh when she's chasing him and family dance party is hysterical. The two of them love to groove to the music. I'm glad they will always have each other because no one loves you, bugs you, and takes care of you like your siblings!!
Monday, May 10, 2010
Child Study Team Meeting and Parent Teacher Conference
Last week was a long week for us. Early in the week we met with Robbie's pre-school teacher. (She is wonderful and does the best she can given her class size and the amount of special needs children.) We were told that Robbie is just beginning parallel play. He has finally begun to sit for story time. He likes music. She doesn't feel like she is doing anything for him in this environment. Although we knew what she was telling us- it was still hard to hear. Robbie is so far behind and the preschool classroom is not meeting his needs. We had already sent an email to our case manager regarding our concerns about this year and our wishes to be placed out of district if they can not provide what he needs. Now we felt more prepared for our meeting with the child study team and the battle we knew we'd have.
The day before the meeting we gathered all our doctors notes and studies regarding the benefits of ABA therapy ( Applied Behavior Analysis). I looked at notes we'd taken from last year and was slightly panic stricken. The words and phrases Robbie had mastered last summer were either gone, replaced with similar ones or no progress had been made. While he has made some strides- all his reports state very slow progress- some regression.
As we entered the room to meet with the child study team- case manager, 2 pre-school teachers, speech therapist, occupational therapist and school psychologist- the room was very quite. The reality is these people had tried their best with the little amount of time they were allotted to give to Robbie and they all knew it wasn't working. It was not enough. It has been a constant battle to increase the amount of services even though we have doctors notes stating he needs 20 to 40 hours of ABA a week. He has been getting 6. The head of the child study team entered the room a few minutes later after we had begun to discuss our fears about the lack of progress. The tone of the room changed. It became so apparent that this individual is the problem in the child study team. She doesn't think ABA is effective. She moved the ABA program out of a separate room and placed it in the back of the classroom with a partition separating the ABA programs from the rest of the class (17 children- 9 of whom have special needs))After a long discussion about "creating a program" for Robbie , Rob and I were ready to object. Why recreate the wheel? There are programs designed for Autistic children. Why not find a program that has demonstrated success as opposed to throwing something together? After some debate it was agreed that he needs a program out of district- so now the search begins.
For the summer Rob stated the obvious to the head of the child study team- who we have been battling with all year. What you tried did not work. Now it's our turn to help our son. She gave in to our demands for summer school. 2 hours of individual ABA a day, 1/2 hour of speech and OT individually and 1/2 hour working together. finally the last 1/2 hour whatever his preschool teacher feels will be best. Music, Art, story time, snack- we're open. We're going to supplement at home with an additional few hours of ABA and speech.
As I look back at the past year I realize I really thought Robbie would "get better" or be "pulled through". I don't think I had a good grasp at how much he needs. During his first week of preschool last spring one of the aids asked if he used a weighted blanket. Rob and I discussed it that evening and felt he didn't need something like that. His problems weren't that severe. The boy in the class using the blanket also had a ball of play dough in his hand and an aid covering his ears. I thought- wow- thank god my son isn't that severe. (This year that same boy is in kindergarten and doing really well. He has a PDD pervasive developmental disorder diagnosis which is not as far on the spectrum as Autism.) A year later a weighted blanket was suggested by my sister in law- an OT. We have been using it for a few days and I can't believe the difference. He immediately calms down. I remember another mother telling me it will take a year to fully accept the diagnosis and the reality of it. I think she's right.
The day before the meeting we gathered all our doctors notes and studies regarding the benefits of ABA therapy ( Applied Behavior Analysis). I looked at notes we'd taken from last year and was slightly panic stricken. The words and phrases Robbie had mastered last summer were either gone, replaced with similar ones or no progress had been made. While he has made some strides- all his reports state very slow progress- some regression.
As we entered the room to meet with the child study team- case manager, 2 pre-school teachers, speech therapist, occupational therapist and school psychologist- the room was very quite. The reality is these people had tried their best with the little amount of time they were allotted to give to Robbie and they all knew it wasn't working. It was not enough. It has been a constant battle to increase the amount of services even though we have doctors notes stating he needs 20 to 40 hours of ABA a week. He has been getting 6. The head of the child study team entered the room a few minutes later after we had begun to discuss our fears about the lack of progress. The tone of the room changed. It became so apparent that this individual is the problem in the child study team. She doesn't think ABA is effective. She moved the ABA program out of a separate room and placed it in the back of the classroom with a partition separating the ABA programs from the rest of the class (17 children- 9 of whom have special needs))After a long discussion about "creating a program" for Robbie , Rob and I were ready to object. Why recreate the wheel? There are programs designed for Autistic children. Why not find a program that has demonstrated success as opposed to throwing something together? After some debate it was agreed that he needs a program out of district- so now the search begins.
For the summer Rob stated the obvious to the head of the child study team- who we have been battling with all year. What you tried did not work. Now it's our turn to help our son. She gave in to our demands for summer school. 2 hours of individual ABA a day, 1/2 hour of speech and OT individually and 1/2 hour working together. finally the last 1/2 hour whatever his preschool teacher feels will be best. Music, Art, story time, snack- we're open. We're going to supplement at home with an additional few hours of ABA and speech.
As I look back at the past year I realize I really thought Robbie would "get better" or be "pulled through". I don't think I had a good grasp at how much he needs. During his first week of preschool last spring one of the aids asked if he used a weighted blanket. Rob and I discussed it that evening and felt he didn't need something like that. His problems weren't that severe. The boy in the class using the blanket also had a ball of play dough in his hand and an aid covering his ears. I thought- wow- thank god my son isn't that severe. (This year that same boy is in kindergarten and doing really well. He has a PDD pervasive developmental disorder diagnosis which is not as far on the spectrum as Autism.) A year later a weighted blanket was suggested by my sister in law- an OT. We have been using it for a few days and I can't believe the difference. He immediately calms down. I remember another mother telling me it will take a year to fully accept the diagnosis and the reality of it. I think she's right.
Wednesday, May 5, 2010
Continue with the ups and downs
We are continually struggling with ups and downs. Two days ago Robbie mastered "my name is Robbie". This was a huge win for us! Yesterday he wouldn't come out from under a table at school to do any of his programs. Up- down. Last night we had our parent teacher conference. It was depressing. His teacher is a wonderful person and she told us she is not doing anything for Robbie. His needs are greater than what the school is providing. We had sent a letter to the child study team last week asking to either significantly increase services for Robbie or place him out of district into a program that will meet his needs. Our meeting with them is Thursday- so we'll see. Right now we're just trying to keep it together.
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