Wednesday, October 07, 2009

October 7th- An update from Monday

Thanks for all the input from my question on Monday!! I was so glad to have the different ideas posted and it gave me some things to bring in to the meeting with Emma's teacher as well.

Our little chat went well. Have I mentioned that I really like E's teacher?? Ok, well, I do :) And she obviously has the kids' best interest at heart, so that makes it even better!

We chatted about routines, likes and dislikes, behavior patterns and yes... discipline! This wonderful woman has a LOT of experience with kids in similar developmental phases as Emma, and a LOT of experience with both children and adults with Down syndrome and autism.

Did I say autism? Oops... yes... I guess I did. Because really, that comes into play.

You see, there's been no question in Mike's or my mind that Emma has some characteristics of autism. In fact, she has most of them I'd venture to say. The neurologist told us very plainly that he believes she is severely autistic. But we haven't gone through anything 'official' to receive a true diagnosis.

When we're dealing with behaviors, though, it's really not something that can be ignored, no matter how much we'd like to look past it and say "it's because of her time in the institution." Yes, that's true. VERY true. But how do those institutional behaviors present themselves? The same as autism.

Some of the things we're going to try really hard to implement in our house include giving a positive alternative, brushing and deep pressure massage, and maybe, yes maybe, finding out whether those letters ASD (autism spectrum disorder) would allow Emma to receive therapies for behavior management which could help her (and US) to learn positive interactions starting NOW.

I know it sounds obvious, but as far as the positive alternatives goes... it's simply something we didn't realize we weren't doing until someone mentioned doing it! That's why I love the network of parents and families that we have in you all! THANK YOU! Emma's teacher is also going to work more on using this in the classroom (tho I think she was to some extent already). "Emma, don't hit, no," and a squeeze to the hand that smacked someone is one thing, but follow up with "we use gentle hands," and showing her how to use her hand to gently touch... that's a whole new level of comprehension. Here's what you did wrong, and here's how you should touch. YAY. I hope that helps!

Brushing is an occupational therapy 'thing' which we did with Emma and Micah when they first came home but we haven't done since last November when we fell out of the routine of it during the holidays. This is a great sensory tool, though, and we really should start again! I have brushed Emma occasionally over the last 9 months but not with any regularity and certainly not the every 3 hours recommended. The OT at school may 'ask' the teachers to brush the kids in the morning, but it has to come from OT, so I will be writing a note or email soon to find out about getting that implemented. It's only once a day, but it's a good thing, and if we continue it in the afternoons, evenings, and weekends at home then it will be good. Emma's teacher is open to this as well :)

Deep pressure massage is something I DO use whenever Emma is really off. I know she's flipped out and needs some major stimulation and she can't go run and burn off steam! She can't even walk... or crawl... so throwing toys or pushing people down seems like a good alternative. But it's not. I'd like to sart doing this more regularly with her as well- not just when she's at melt-down mode.

And lastly, ABA therapy was mentioned and that would be what we need to look in to with insurance and availability and diagnosis... we may NEED the Autism diagnosis to receive ABA therapy... I don't know. Or it may not be covered at all. But we should look in to this, and my goal is to do this before the holidays. Not today, not tomorrow... but soon.

So there's the update! THANK YOU all for your input, and if you have any other comments you'd like to add I would greatly appreciate it! We know we're far from perfect and that we don't hold all the answers! God doesn't call the equipped... He equips the called, and He humbles us regularly with reminders of how much we need others in this journey called parenting. THANKS!

Edited to add: and now I'm thinking again.. Hmm... thanks Shelley... I emailed that to E's teacher


  1. As you know, Xander recently was diagnoised with ASD and he demonstrates many of the same behaviors as Emma. As far as the "gentle touch" goes...our developmental ped said to NOT do that. He said that for a child with severe sensory needs, they CANT differentiate and you are sending a mixed message when you take the hand that they just hit with and say "gentle" and then demonstrate gentle...because the child can't FEEL the difference enough to make the connection. He said we need to be saying "no touch" and provide an alternative to touch. With a baby, that might be waving to the baby instead of patting the baby(I don't know any other ideas, we didn't discuss babies because I don't have one of those!). So, we've started implementing some suggestions based off of that thought process and it IS working.
    The developmental ped. said that we have to revamp out entire way of thinking. He said that the ABA therapy will teach us that. So, we too are trying to get ABA therapy started. Here, a child must have an autism diagnosis in order to be eligible for ABA. Our insurance also requires an ASD diagnosis in order to pay for ABA. LOTS more paper work...that's for sure!

  2. That makes a lot of sense Shelley. You know, it also sounds a lot like dog training. And I don't mean that bad! In Temple Grandins book she talks about animals, how they perceive the world, and the similarities to how someone with autism perceives it. "Animals In Translation" is actually a book on how animals think, but it draws comparisons from Autism. When you say you have to revamp out the entire way of thinking, it makes me think of Logan and how hard we have worked to help him be successful. T

  3. Fascinating post! I'm so glad you are figuring out things that will only help Miss E.

    As you are new we are basically brand new with Evie! But we've started brushing, compressions, oral input and swinging. It's helping alot. Evie's a sensory gal! We'll see with time if it helps with her 'autism-like' behaviors.

    The swing has helped the most so far.

    Love ya, friend!

  4. Oooo good point Shelley. With my kids who hit we stop them, and say "We do not hit. We do not hit." and then with one boy on the spectrum we'd say "Show me how you keep your hands to yourself" and he'd fold his arms over his chest. If he was looking like he was gearing up to hit we'd say "Tommy. Show me you you keep your hands to yourself" and he'd fold his arms. and we'd redirect him and then praise him for NOT hitting. I think the trick is to get them before they do it, so you can praise them for NOT doing it and then redirect.

    Maybe work like Shelley said on high five, or wave, or blow kisses, so that she has somehting she CAN do.

    have you tried social stories with her?

  5. When you have a chance come by and I will show you a sensory diet I have one of my students on. AMAZING!!! From a specialist! TG

  6. I've seen positive results with using weighted blankets or weighted "pillows" when kids are in their chairs. Gives lots of that deep input constantly.

  7. You know another label won't change who Emma is. Yeah, it really sucks to see that AUTISM diagnosis in black and white. But it is what it is. And if that's what you need to get services, then go for it. I've always thought it ridiculous that you HAVE to have an autism diagnosis to receive ABA services in a lot of school districts. Whatever happened to services being given to an INDIVIDUAL not a DIAGNOSIS???