There is always talk about the affect that having a brother or sister with autism and what affects that it has on their relationship and overall experience growing up. As Elliot and Alvin get older I am starting to understand more of what this really means.
Over the past few months I have seen the relationship between Alvin and Elliot change and grow. One thing that I expected was for Elliot to be a very good big sister to Madilyn and take on the big sister roll well. What I didn't expect is for her to begin to take on the big sister roll to Alvin.
Over the past year with all of our visits to Seattle Children's and Alvin being hospitalized twice for about a week each Elliot began to understand things. She began to understand that he isn't like other kids his age or hers. Slowly over time she became protective. As in you mess with him without her permission and you will pay dearly. When we are home she messes with him and beats him up like any good big sister.
The funny thing is when they are separated they each get a little lost. At school when the year started Alvin had some issues. He was apprehensive going into class and interacting with the other kids.
This past week Elliot went to a camp at the little gym without him and honestly just looked lost. Alvin had a rough day and we thought she could use a little time with other normal kids just to have fun. When we got there she just stood there at first just looking for another kid she might know, but overall just looking lost from not having him with her.
I honestly think though that Mac, Elliot and Madilyn will all be better people for having a sibling like Alvin. Elliot especially has seemed to learn so much about being around kids and adults with special needs and instead of shying away from people that are different she is drawn to them.
So maybe having a sibling isn't such a bad thing or burden like it is sometimes made out to be. Maybe those of us with kids with autism are actually giving their siblings something that will benefit them far beyond their childhood.
Butters was diagnosed with Asperger's Syndrome when he was 3.5 then hydrocephalus at 5. Here I talk about the high's, low's, challenges and and all the fun things that happen in between.
Sunday, January 27, 2013
Sunday, January 13, 2013
The next steps
So during our first complex care visit we mentioned that we had some concerns about his teeth. Dentist appointments have always been a nightmare and he was well overdue for a visit. They understood our concerns and referred us to a dentist that works with as a partner with the University of Washington in dentistry and only sees kids on the autism spectrum on one certain day of the week.
We had the appointment last Monday and just like last year tested our health insurance, this year our dental insurance will be tested. Turns out he has cavities in his top front 2 teeth and some of his back teeth. He has a chipped tooth and an abscess on his gums.
Once again you think all of this would have hurt and he would have shown us that something was wrong, but he didn't. He never acted painful. A while back when we were dealing with the onset of learning about him having hydrocephalus I said that I just wish he could have shown or told us he was in pain. Once again I just wish for a little bit of that communication. Because of his high pain tolerance and inability to tell us something is wrong we are left in a bad place. We can never be sure he's ok. We never know if something is wrong or hurting. As a parent this is something that hits both of us pretty hard. We are still hopeful that one day things will change but for now this is just the way it is.
So now we wait for a call from the scheduling department for oral surgery. This is going to be another major surgery for him at Seattle Children's but should just be out patient. The amount of work they need to do is staggering, but we know its for the best. Once this is taken care of we can start trying to get him back on track with his dental needs and start getting him used to the dentist again.
We had the appointment last Monday and just like last year tested our health insurance, this year our dental insurance will be tested. Turns out he has cavities in his top front 2 teeth and some of his back teeth. He has a chipped tooth and an abscess on his gums.
Once again you think all of this would have hurt and he would have shown us that something was wrong, but he didn't. He never acted painful. A while back when we were dealing with the onset of learning about him having hydrocephalus I said that I just wish he could have shown or told us he was in pain. Once again I just wish for a little bit of that communication. Because of his high pain tolerance and inability to tell us something is wrong we are left in a bad place. We can never be sure he's ok. We never know if something is wrong or hurting. As a parent this is something that hits both of us pretty hard. We are still hopeful that one day things will change but for now this is just the way it is.
So now we wait for a call from the scheduling department for oral surgery. This is going to be another major surgery for him at Seattle Children's but should just be out patient. The amount of work they need to do is staggering, but we know its for the best. Once this is taken care of we can start trying to get him back on track with his dental needs and start getting him used to the dentist again.
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