As a preface to this post, Mackie has asked me to share the framing of what was happening to him – back right after Christmas, I began to see some odd spelling patterns when we would sit and try to write blogs or do any daily conversing. Nonwords were appearing midsentence. These nonwords would follow typical word structure, but had no meaning. He was also struggling to get out basic thoughts, and his grammar took a nosedive. Verbs and pronouns would drop out – at first I thought we were looking at a form of writer’s block. Many spellers who get into open communication have some moments when emotions are just a bit overwhelming and it can interfere with the motor action of pointing or typing.
As the weeks passed, and his frustration level increased, I knew that he was getting upset because his freedom was now compromised. It is incredibly hard to have a means to access the freedom, only to find your body betraying you yet again. Pressing him in the moments when the interference seemed to be less finally brought us to two pieces of information: one, that he was not sleeping well, and having terrible, vivid nightmares. We made changes, tweaked, got into a new routine, and that opened the gateway to the next piece – that he was having equally terrible headaches. His “winsome fears” as he just labeled them to me, were legion – that he was having seizures, that he had somehow had a stroke, that he had a brain tumor. We addressed it with out doctor as quickly as possible in order to rule out any of these fears, and I’m happy to say that none of them apply to our ordinary autistic guy. He was able to breathe a HUGE sigh of relief, regroup, and focus back on trying to get back to spelling, blogging, and spreading the mission of helping other nonspeakers. – At the bottom of the blog post is our gofundme. We are within sight of reaching our initial goal, but read on, and let Mackie’s words take you there. – Mackie’s mom
Very good knowing that nothing is very wrong with me – am feeling so much less fearful – doing the ct scan did feel freeing – very really i’m feeling happier than have been in months – changes your outlook – time on world you love is so fleeting that unless you make the most of it you lose frankly great life moments – i lost some time when i did not believe great things were happening in my brain – but now in thankfully very blessed circumstances my brain is just fine
grateful that you made free some meaningful time to make sure things were healthy going just really fine – Have grateful feelings to be much healthier than i feared
I believe change is possible great things should bring very thankful time – i just pray that brain activity goes back to what it was before december
Now i want to focus on getting help to other nonspeakers through spelling to communicate based in virginia please support our mission and send my cousin to growing kids therapy center – very freeing time to come for him soon and we need you to help us to help him
As always, the words are Mackie’s, and they are posted with his permission and desire to share them on his own blog, with whomever happens to read! His sentences are lightly edited with hyphens to make clear separate thoughts.