Wow – today’s post on Speak for Yourself’s blog hits me right in the heart. So many people *don’t* see these small gains in communication skills because they are too busy collecting data or focusing on something else. Please read it, especially if you are a professional working with students with complex communication needs.
It can be so frustrating when other people don’t notice how many skills my son has with communication just because he won’t use full sentences most of the time and doesn’t phrase things as “I want x. I want y.” Did you know I deliberately didn’t teach “I want” and asked him to say “please” instead? Did you know I purposely didn’t spend all my time focusing on requesting because he can do so much more than request? Continue reading
In the last post on my Facebook page, I mentioned that H will have a new Speech Therapist this year. (For those who are new to the page, H is autistic and mostly non-speaking and uses the app “Speak For Yourself” to communicate.) I’m looking forward to a new year and having another set of hands and a fresh perspective to help H develop his communication skills. I’ve heard she is very sweet and I’m eager to get to know her.
As always when new teachers come into his life, I’m also apprehensive about all of the what-ifs. We have been extremely fortunate that our school district is amazing and his teachers have been wonderful. However, I am always waiting for the other shoe to drop. I know that we are swimming against the mainstream current. I know that most of the information that people are presented with about autism is full of misconceptions and ableism. The majority of people view autism as a broken version of “normal”; a collection of deficits and shortcomings; something that needs intervention and intensive therapy to be “fixed”. We do not.
We embrace neurodiversity and know that there is no single “correct” or “normal” type of brain. Neurological differences, including autism, should be recognized and respected as valid ways of being. We reject any therapies that seek to change H or that would make him feel that his way of being is wrong. We want him to have the support and accommodations he needs to thrive as his beautiful, autistic self. We want to protect him from anyone who views autism negatively or who would be so busy looking for things to correct that they would miss all of his amazingness.
And so, I am filled with questions every time someone new comes into his life, even when I am mostly optimistic:
Will she presume competence? Will she secretly (or openly) believe that he doesn’t understand what is being said to him? Will she be open to hearing how we’ve been doing things or will she prefer to stick to the way she is familiar with (if she has a way)? Will she use a natural approach to developing communication skills or will she try to test him or push him to say certain things? What if he becomes averse to using his AAC device and then has no reliable means of communication?
Will she understand and be respectful of our conviction that autism is a natural brain difference and a valid way to be? Will she be inclined to view stimming negatively or be wanting to force eye contact or demand a still body or quiet hands? How much undoing of misconceptions will I need to do to ensure that my child is understood and treated in a way that is respectful of his neurology?
Will she be ready to share in his passions to help him gain new communication skills or will she feel irritated that he “won’t stop talking about carnivals”? Will she go with the flow when he has zero interest in the fun activity she had planned? Can she ensure he feels safe and excited to come see her?
I try to push these thoughts aside. I am naturally a worrier but in reality, I am optimistic and hope that we can all work together to help H communicate more effectively. Now I will take off my anxious hat and put on my productive hat. This week I’ll be meeting with H’s team before the start of school so that I will have an opportunity to share my thoughts and impart as much info about H as I can. I’m committing to staying involved throughout the school year and I’m looking forward to collaborating to make sure he is getting the support and encouragement he needs. Wish me luck!
As H gets older, he is starting to have preferences (and be able to share those preferences) about his AAC device. Whenever I think there is a word we should add I ask him first. After all, this is HIS voice and I want to show him that I respect that. I also want to make sure that he is involved in decision making early on so that he will feel comfortable self-advocating and making changes to his device on his own someday. Continue reading
(This was originally posted on my Facebook page several months ago but I am thinking about it today as H is happily playing with his carnival toys!)
[Image is a picture of several carnival toys, arranged carefully, with the text “Special Interests”.]
Your whole body exudes joy and your soul reverberates with excitement
As you sit and organize your carnival rides.
Each has a place; the cars are in attendance; the people are arranged around and on the rides.
[Image shows a stack of wooden alphabet blocks with the text “Appropriate” Play beneath it.]
If you are the parent of or work with autistic children, no doubt you’ve heard the term “appropriate play”. Starting from toddler-hood you hear warnings that you need to teach “appropriate play”, that only certain kinds of play are okay and other kinds, like lining up objects or watching wheels spin, are inappropriate. These kinds of play are said to be dangerous, isolating, “red flags”, wrong. Children who like playing this way will be said to have “poor play skills” or “score low” in play skills.
This is, quite simply, a load of garbage. Continue reading
October is AAC Awareness Month! Locally, we spread awareness just by being out in the community with the Talker. Someone almost always asks, “What game are you playing?” when we are running errands and they are usually really fascinated when they learn about how H uses his Talker. More and more, people are overhearing him talk and asking if he uses it to talk! That is really cool and a testament to how well he’s doing. We’ve never received any negative comments, but I’m always ready for the “kids can’t go anywhere without their technology!” type of comment since there’s a constant barrage of ‘articles’ about screen time rotting brains (that’s another blog post for another day). I’m brainstorming ideas for the rest month – stay tuned!
Something major happened this week. Something that has never happened before in H’s life. For the first time ever, he was able to tell me something that happened at school that upset him.
You guys, this is a HUGE deal!! Every parent of a child with complex communication needs worries that their child won’t be able to tell them something important that happened while they were apart.
I’m not going to share the details because I will always respect his privacy, particularly with “the hard stuff”. The teacher let us know he had a hard time at one point during the day but they weren’t sure why and I was able to ask him about it when he got home. He was able to tell me how he was feeling at that time (this alone is amazing!) and what he said afterward didn’t quite make sense without any context but then the teacher emailed me more information about what had been going on and I realized he had told me exactly what had upset him!
So, in short. Wow. 1) Talking about big emotions – win. 2) Being able to tell me what caused him to feel that way/what he was thinking about at the time. Huge! Exciting things are happening!
(This post appeared on our Facebook page, here. Follow us on Facebook for extra posts if you have not already!)
This Summer I’ve been wanting to do a big push with modeling words on H’s Talker to help him see all of the different things he can say with it across different scenarios. We have been focusing on 6 core words (but still modeling lots of other things, too). Continue reading
H has been loving the solar system for months and is able to name the planets in order and name the dwarf planets and the milky way galaxy! He knows attributes of the planets and loves answering questions like, “Which planet is closest to the sun?” and “Tell me something about Saturn” and giggles if I say “Mars is green”. He has also been naming the colors in rainbow order recently.
I’m actually thankful that the planets and colors are out of order on his Talker so no one can say he’s just pressing the words from left to right. I wish that people wouldn’t assume that, but they do. Continue reading