Forum: Children with Developmental Delays and Disorders
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So a few weeks ago Kian had the ADOS completed on him. Last week we had a meeting with the team that's been assessing Kian (pediatrician, Occup. therapist, speech therapist, Early interventionist, etc) His diagnosis is Autism.
I know that me and my husband thought something was up whether it was autism or something else but it's just so hard when you finally read it on that paper. In many ways this is good coz it means that we can now get the help we need for him but at the same time, it just breaks my heart wondering what it means for his future. I try to stay positive, it's not my nature to be negative, but this is hard. The other day my friend was going on and on about her two kids and how good they are and this and that and I just felt anger because nobody we know is going through this. Nobody can relate. What's more, I dont even feel like I can share it with them because they wont understand or that they may avoid letting their kids hang with Kian coz he isn't like their kids.
Kian is such a wonderful little boy. I think I've said it before but for the most part he is pretty typical but he does struggle iwth the everyday social stuff. My husband was trying to understand what the doc meant by autistic (he knows what autism is but if it's a spectrum well where is he). Of course we know that it's not like a rainbow where you can say severe, mild, etc because of different symptoms but the doc did say that unlike other children diagnosed with autism kian didn't score as high as others but he did still fall within the borders of autism. Which is also why we can apply to get IBI therapy through the gov't (which is a 4 yr wait) but that we'd probably not qualify. He said that's a good thing in a sense coz it means his needs aren't as high as other autistic kids but at the same time, if we want it now, we'd have to pay for it ourselves. He did also say though that he thought Kian might actually not benefit from IBI as much as other form of social play groups and communication therapy so I don't know. I've forwarded the report to the school so that I can now advocate to have an educational assistant for him but even that will take time because of all the school politics.
Anyway, I was really upset last week. Fine over the weekend. and now i'm sitting here and crying all over again. There are other services I think he can be elligible for so I'm starting to look into all that now but wow is it ever hard when you finally read those words on paper.
I was just there a year ago. It hurts. I feel so bad for you. I wish I could tell you that feeling goes away, but honestly there are days when I am driving down the road and just break down. It does get better though. Once you have a clear PLAN in place, it gets easier. *hugs*
My son was diagnosed with Autistic Disorder in January at 26 months old.. Even now it's still hard to accept. And it's OVER WHELMING.. Having a good support group will help you over come the obstacles..
My son has a mild form of Autism.. If you've seen him in person, you would think he was not Autistic.. I look at the diagnosis as a way to get help.. I honestly couldn't get the services we have if it wasn't for him having the Autism Diagnosis..
(((Hugs))) I think we all can relate to what you are going through right now. I was in the same spot almost 4 years ago. And can tell you that it does get better. To this day, and Alex is doing good, I hate reading reports about him. They always make things seem way worse than they are, atleast to me they do.
As for friends not getting it, alot of them won't because they are not in the situation. What I did when Alex was diagnosed was found a local support group and met other moms who could relate to what I was going through. I found one at meetup.com, its a good place to start. I still kept my old friends but now had new friends who I could talk to about autism and everything relating to autism and they understood what I was talking about. Also other parents are your best bet to find out about services and what not in your area. Well that and I joined a couple online support groups.
thank you ladies for all your support. I'm definitely going to look into some support groups and i've begun the journey of trying to find out what the best course of action is with respect to Kian. The pediatrician suggested that IBI may not be the best road to take iwth Kian but more social type groups so I've begun looking into all that for him.