Camden Different
Communication. What a tricky thing in the most typical person… let alone a person with a neurotransmitter disorder. It’s no secret that communication is very difficult with STXers – in fact, it has repeatedly been named the most challenging aspect of life, over seizure control, gross motor skills, ataxia, etc. Our experience with Camden has been no different. As parents, we all know that there is SO much more trapped in the heads of our children, but it is hard to find an effective way to get it all out.
This past week while feeding Camden on vacation, we had such a breakthrough in communication that I had to pick my jaw off the floor. It was the second day on vacation, and we started breakfast with me modeling “waffle” on his eye gaze device so that he knew that he was eating a waffle, even though it tasted different than the waffles at home. He instantly went to “tummy” (which is a three-hit word – “help” then “body” then “tummy”) and then “love” (a two-hit word – “feelings” then “love”). He has the words “yum” and “yuck” both on his eye gaze device, but he decided to go with the phrase “tummy love” which is a phrase I now plan to use to describe my favorite foods going forward!
Next thing you know, all six other kids in the house (ranging from 3-9 years old) descended upon the kitchen and dining room in a sort of chaos you would expect on the second morning of vacation. There was a lot of noise and excitement, so we sent them downstairs to watch a show while breakfast was prepared. When they went downstairs, Camden went to the “name” screen on his eye gaze, and I figured he was going to go to “Clara” (his sister) because she is his favorite person in the world and was the leader of the chaos. He surprisingly went to his own name, “Camden” and I thought maybe he went to the wrong button but decided to see what he said next. He then proceeded to go to the adjectives screen…. then went to “different.”
Camden different.
My heart instantly dropped, and my stomach was in knots. My eyes welled up with tears and our friends staying with us asked what he said, so I tried repeating it. I couldn’t get the words out. I started ugly crying at the thought of Camden feeling the heaviness of that feeling. I excused myself for a second, let the crocodile tears flow, pulled myself together and came back out. By then, the other kids had all been called back upstairs to watch the cartoon in the main living room and I cleaned Camden up to join them and breakfast was done. That was it, Camden was going to spend the rest of the day attached to their hip – screw his schedule.
I escaped for a run to do some thinking while he hung out with his siblings and friends. Camden different – there are so many layers there. Initially I was stunned and deflated, but as I thought more… wow. Camden, who typically has the label of profound to significant cognitive impairment, understands the complexity of the word different. Camden, who has been labeled nonverbal and not given a fair chance to communicate, knew EXACTLY how to communicate his feelings. Camden, who typically follows a rigid schedule, was able to tell us to forget the schedule and let him be a kid and play with the other kids the rest of vacation. You better believe that’s exactly what we did the rest of the trip. Was it easy to get a 45 pound non ambulatory kid to the beach? Not at all. Did I put him in a hiking backpack and walk up and down the stairs to do it every single day the other kids went? You better believe it.
If it wasn’t for the speech therapist at this first speech intensive therapy who trialed him on an eye gaze device, he wouldn’t be able to communicate, and we would still be working on finger isolation on an iPad. If it wasn’t for the speech therapist at his second speech intensive who decided to put social and fun words on his device so that he could say more than “stop, go, more,” we wouldn’t know how much he is capable of communicating. If it wasn’t for his grandma, my mom, who fights like crazy to get him more and more vocabulary on his device, he wouldn’t have the vocabulary to properly describe his feelings.
So don’t give up the fight. We have been through our fair share of speech therapists, and it is a tricky balance to find one who is knowledgeable in AAC and that your child clicks with. Keep searching. Keep searching for who will bring out the personality in your child. Keep searching for who believes in your child and who will fight to bring out more.
We have also now been so deliberate in pointing out differences in our everyday life. We are all different – that’s what makes the world go round. Different is okay, less than is not.
Camden happy.
Heather Jones
