This popped up yesterday from 3 years ago and it really struck me how our current system can underserve our children. Up to this point the school had not even been willing to assess EJ for the use of AAC (Augmentative and Alternative Communication) which can be anything other than standard methods like speaking. So for instance, letterboards, iPad apps and dedicated devices are all part of AAC. We were lucky…he showed us he could read by matching pictures to words just a few months before this video. This was the day when I realized he could break down words into letters and type them. Looking back it seems nuts that I doubted that for even a millisecond but we were told he was just gonna learn life skills and probably would not be able to read or write.
Also yesterday I was commenting with a mom whose son started spelling to communicate with her by using his magnetic alphabet letters on the fridge. It reminded me of EJ showing us glimpses like this (it also reminds me a bit of Stranger Things, hence my blog title). These children were all able to find a path to show they were in there. Some…many children may not have those opportunities or motor skills so the current system just labels them severe and low functioning. It is us that need to function better to find the different ways to help people communicate and access everything the world has to offer. We need to stop setting expectations so low and to presume the best in ALL. We must do better.
Here’s my response to the mom whose child was able to show he could communicate by using magnetic letters…
“First, can I tell you how my heart just leapt for joy at the fact he started communicating through spelling to you on a magnetic board! He found a way to show you his intelligence at such a young age! My son loves letters and would trace them on signs etc but many in the current system wrote this off to OCD. I met another boy whose mom was told to stop sending him to school with the alphabet flash cards he loved because “he won’t be learning to read or write so they are just a distraction” (SMH) I am by no means an expert because we were able to pull my son out and homeschool him when we saw how detrimental our school options were. But my thoughts would be for you to train or bring a trained IA who can help with the regulation piece. Remind the school that it’s the SENSORY REGULATION part that will need a carefully thought out plan and not the ACADEMIC SKILLS or INTELLIGENCE part. Try to impress on everyone who has the honor of working with him that respecting his intelligence and speaking to him in a calm manner will help to build his confidence in them. It’s so critical to build that relationship and environment of not only awareness and acceptance but EMBRACING and ENGAGING confidence. With homeschooling we were able to cut out the non helpful ones along the way but you’ll have to be vigilant since he’ll be at school. It’ll go a long way that he knows YOU know his capabilities. Reach out to this community often. Best people on the planet IMHO “
Thanks for reading! Next post will be more EJ writings. I just did this one after bedtime so I wasn’t able to get his help.
So we’re back to this blog with great news from the communication front. It’s an interesting perspective that we hope will be helpful to others at any stage of this journey. Today seemed like a great day to look back at the incredible journey of the last 2 years. From goals of the alphabet and the numbers 1-20 to being assessed at grade level in math (5th) and 7th grade level in language arts. I kept up with our journey on facebook so often I will link back to the videos there. My hope is to offer insights and updates on our current achievements while also looking back at the steps along the way. EJs hard work and dedication have been super inspiring and kept us all in awe. It was 2 years ago today we headed to Austin, TX and our true RPM journey began.
We had just started homeschooling and something in my gut said, “we gotta see Soma”. I was prepared to just end up wrestling with him on the floor while trying to absorb her wisdom and then lo and behold he just sat with her and went at it. At some point she breezily asked him what airline we flew to get there and he pointed to S-O-U-… after I picked up my jaw from the floor I thought, “now we have got some work to do” We’ve all learned so much these last 2 years (huge understatement). We still use TouchChat for basics but as a wise fellow Speller once said, “(with an AAC app) I could order a cheeseburger, now I can write the menu” ❤️