It must be so hard to not have a clear picture of what is going on with Matilda. She is a beautiful and complex child. I think it is hard for Drs sometimes to make a formal diagnosis because they are all so different, though cut from a similar cloth.
oh thank you all!!! Its so helpful to be allowed to feel this way. Maybe not today while I have 2 girls.... but maybe on the weekend I'll let myself go.
This morning Matilda came in & woke me up and asked me around 15 times if she was going to Montessori.... She is supposed too, but she's coughing so I'm tossing up. She NEEDS to know.
Christy last night as I was supposed to be sleeping I had an idea.... In DS's class there is a little boy with sensory integration issues - his present quite differently to Matilda's though. Earlier this year he was having difficulties in class because he felt no one would be his friend (he likes to hug and kiss kids a lot and likes to hold their hands etc and kids just didn't understand that and so kept away from him). His Mum made a book about him on her computer, introducing him and talking about why he did some of the things he did and suggesting possible things the kids could do/say in response to her son's actions. The teacher then sent it home to a different family each night and asked the parents to read it with their child.
This really helped parents and children understand this boy's sensory issues, and the children were far more accepting once his behaviour was no longer an "unknown" to them. I think it helped the boy too, as he was receiving consistent feedback if he did something inappropriate (eg if he was kissing them the kids would say, "thank you for your kisses. I'd rather if you just sat down beside me and we played with these ..... together.")
Anyway, I don't know if that helps or if it's an option for Matilda's last month at her school.... it kept me awake last night so I wanted to pass it on. Hope you have an enjoyable day with the munchkins
I think thats a great idea Christine. At Montessori if someone starts with a disability they put a picture of the child with a description in everyone's pocket so that parents can talk with their children. Matilda & I talk all the time about "Maya and her wheelchair" so much so she see's Maya and thinks her wheels are cool and starts asking her about the seaeme street characters on her wheels.
I think for school it will be a great plan. I'll talk with Miss Ann, she may even make it into a weeks activity to help everyone understand. Like have the older kids read books about it and have the younger kids to drawings of brains or something.
Maz, your post brought tears to my eyes, I think it embodied everything we have all felt!!!!
Christy - It's so frustrating isn't it! Xander went from a diagnoises of PDD to Aspergers within 8mth. Who knows where we will be 5 years from now. Xander's teacher has similar stories which they share at story time as Mistyfying was talking about and there is a great picture book called "all Cats have Aspergers." it's a start although frustrating as obviously not all people with autism/aspergers react the same way to stimuli but it was a good book to share with family and friends to help them begin to understand.
As for greiving the diagnoises I swing from mourning over things that he will never be interested in/miss out on to happy that although he is who he is there is a place for him and by understanding his diagnoises we can help him and others know how to approach situations - does that make sense? The day we finally had a dr acknowledge that yes this child has some challenges Bob and I felt a wave of relief! He wasn't being naughty or uncontrollable he just perceives things differently and reacts differntly. We are eternally blessed though as DS has a thing for rules and a great memory so if he reacts inappropriately we can give him a rule to follow that helps him adjust and we use his social stories a lot to help with this. Once we figured out these rules it stopped a lot of behaviours like kissing/hugging/licking people shopping centre break downs etc. We give him other outlets and rewards which work 60-70% of the time. I sometimes wish I had a shirt that said "I have aspergers google it before you judge my behaviour" along with one that said "I dressed myself this morning and yes I like my socks pulled up :-)"
Things are going okay, I'm waiting with baited breath for Tuesday's assessments. They are the final ones prior to all the different groups meeting together to decide what they think.
BIL was diagnosed with Asperger's on Tuesday and has been having a hard time the last few days coping with the reality of it. I am finding that supporting him through this has helped me. ~Saram~ was so lovely & met me on Friday at a park & we had a brief chat while chasing children. She lent me 2 books on sensory processing/integration which I have had a quick skim over, and am looking forward to reading through some of it tonight.
Of course today she went to an indoor playcentre for a birthday party & did extremely well. She came home & had to destress by laying in bed with lights off and no sound but after 15 minutes of that she was ready to get up & eat lunch and have a real rest.
Last edited by christy; September 28th, 2008 at 03:33 PM.
Registered User
Bookmarks