This post is now available in the ‘Life with an Autistic Son’ ebook available to download from Amazon.
I want to respond to your post, so well written and touching. But I sort of feel as if I don’t have the right. I am a speech/language pathologist as well as a fifth grade teacher. I have been the overly cheerful voice on the other side of that table many times, as I know you have.
I’m also the mother of three typical children. Because I have known both roles, I count my blessings every single day. I wish that there were some magical answers for you and for your son. I wish that there was a script for teachers in this situation.
Perhaps there are gifts and blessings unseen yet for all of you. They won’t take away the pain of your reality, but maybe they are out there for you. I truly hope so.
I have to admit to gettig watery eyes reading this. Then I had to wait 10 mins and let it digest before replying. This is SO how I feel, it’s like you’ve read my mind and expressed it perfectly. Especially seeing as we have parents eve coming up next week – I made and crossed out 3 different appointments, wondering whether there was any point in getting one my husband could come to (but he can’t daytimes unless with lots of notice and we don’t have childcare for an evening). In the end I just thought, oh well, what can they really tell me in 10 minutes anyway – that’s all we get! We do have a statement review coming up too, so I guess I can save the questions for that, although that feels like a much more formal and structured meeting. I would so love to be having a ‘normal’ parents evening, with those ‘normal’ worries. Hope your mood lifts soon and the rollercoaster goes back up…
Would you mind if I share your blog post on my blog and facebook pages?
StephsTwoGirls, I would be delighted to be shared on your blog and Facebook pages. Thanks!
I no longer go to them for the younger. It’s very obvious they cannot answer the questions you listed nor are they interested. The special ed report card is a regurgitation of the IEP. No more, no less and like ABA it has to be perfect or no ability to move forward so months are lost to introduce new things. Yet, he has a teacher that does her best and does truly care. A classroom he enjoys, doing well in and learning. But, in the end it’s still respite.
Dh has agreed to pull him at Gr 6 – one more year – after today’s conversation I’m going to ask him in a few days whether or not I can write that letter to pull him now. A year ago he would have said “never”… I appreciate he’s been thinking about it. Usually he has an opinion but no “say”. I’d like him to have a say and be on side with this.
I’ve been reading your blog for a while – you started it up around the time we began to suspect our son, too, was autistic. We’re a bit behind you (our son is younger) and it has been helpful to read of your experiences as a kind of preparation for when we get there. Our paths aren’t exactly the same, of course – the other day I described it as if we’re walking an unknown path through the woods, and occasionally catch a glimpse of you ahead or off to the side. It’s just good to know we’re not alone.
Anyway, I wanted to comment to say that I cried a little, reading this, as I recognise the emotions you describe. It’s one of the hardest things to ever describe or talk about to other people, this anger, this sadness. Others assume it means you see your child in a negative light, but it doesn’t necessarily mean that. It’s more about you, not them. It’s just part of the experience, because quite frankly, sometimes life really isn’t fair, not at all.
I just wanted you to know that I understand: I’m there lost in the woods too.
What you wrote hit home for me, just not in the school setting. Alvin is still in a developmental preschool class where he is with other kids like him. Next year we are pushing him to be mainstreamed into kindergarten and I know things like this will come up. The meetings with the teacher where you talk about how well he is doing yet you know how far off he actually is in the skills or activities.
I do however see these things and also get angry at his gymnastics classes. He is mainstreamed and while all the parents of typical kids sit back and relax I’m always on guard. Socially he is about 2.5 and he physically turns 5 this month. He has made great progress but at times I leave crying. It wasn’t supposed to be like this. He wasn’t supposed to have difficulty communicating or socializing like this.
I know how you feel and honestly it sounds like you guys are coping great and your blog is a wonderful way to get out your frustrations regarding your son.
Thanks everyone. I hesitated before posting this week but I’m glad I did now. We should never ever forget we are not alone in the things we are going through. Your kind words mean a lot to me.
Interesting and well written as usual. So much of what you say sums up how I feel. My DS a bit behind yours as due to start reception this september and was disagnosed with ASD 6 months ago (although he is non verbal). After a lot of heartache we have decided to take him out of his pre-prep which is a lovely school but they have never had an autistic child and its just not geared to him. He is plainly not going to follow his two sisters to top ten schools. About to get our draft statement through and we are going to name an asd unit which is attached to a state school. Have no experience of the state system so its going to be all change for him and us, but I was kidding myself thinking that he could cope in mainstream and as soon as we went into this unit we knew it was suited to his needs. Perhaps that will change and he will enter mainstream in the future but I anticipate that parents’ evenings for us will continue to be a difficult occasion for years to come.
Loved reading this,and definately recognised some of the feelings you have . For me parents evening for my 9yr old has always had that feeling of dread. Inappropriate behaviour, answers back,cheeky, rude , disrespectful were all words used to describe him. So the school to me has always labelled him as a naughty boy. Only 3 months ago have we had the diagnosis of HF autism, and to me this is such a positive thing. Only now do i feel i can face these meetings without getting upset , and can ask of the school what they are doing to support him and the stratagies used to lessen any potential difficulties .
I dreaded every Parent-Teacher Conference as it’s called here when my 14 1/2 year old Aspie daughter was growing up. She was a holy terror, but she is brilliant! She was treated for ADHD from age 6 until age 13 1/2 when she was finally diagnosed with Asperger’s Syndrome in October 2011. Her 4 year old fraternal twin brothers were diagnosed at the Marcus Autism Center in Atlanta, Georgia (USA), one with PDD-NOS and the other with moderate/severe classic Autism in May and June 2010. Her diagnosis explained so much of her behavior problems in primary school. It’s a year later and I still feel horrible for not knowing sooner. It just wasn’t diagnosed as often back then. When I told her past teachers about her Asperger’s, they all nod and say “wow…that makes sense. that explains an awful lot”. If I had known then, I could have gotten OT for her sensory issues and social deficits. She finally has a couple good friends. Ironically, one of her best friends also has Asperger’s as well as Bipolar Disorder. You know the saying “birds of a feather flock together”….it is as I said before “ironic” that her friends are like her. But I am happy she has someone to share her feelings and problems with….even if it is a boy 🙂
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