This is Tyson, Mr. T for short. He is one of our four grandchildren. Because he lives with us, I get to see the changes God is working in his life every single day and what a blessing it is!
Mr. T was so much stronger than many infants his age, he went from scooting around on the floor, to some type of what we affectionately call “leapfrogging” to standing and walking. Crawling never was involved in his learning to get from one place to another. It was a cross between a one leg crawl and a hopping motion all at the same time.
He didn’t verbalize like most children his age and our concerns were waved off, time and time again. By the time he was two, he had 3 words, maybe 4. The rest of the time we relied on grunts and gestures, pictures and sometimes we gave up but he would persist until we understood him.
He walked at 10 months without assistance and by 12 months, he was running and jumping and climbing. And again, the language delays were thought to be something he might be slower than others at picking up on, but simply because so many other areas of his development were ahead of the game.
For anyone that loves a person that is developmentally delayed or challenged, you can understand the frustration and irritation that grows when you know there is something different about your special person, but no one will listen. So you read everything you can get your hands on about where a child should be at each stage in their life, you beg for interventions from physicians, but you are put off more than once. We are so thankful that someone did listen, finally. At his two year checkup, with a new pediatrician in place, right away referrals were made and the process began to find out exactly what was going on. Audiological testing to check his hearing; speech testing to determine his level or non-existent levels of voice communications; cognitive testing to determine what he understood and didn’t. Evaluations to determine if he needed additional physical or occupational therapies and then the day of diagnosis arrived.
We weren’t really surprised by the diagnosis just concerned. Where do you go from here? He was diagnosed with Autism Spectrum Disorder, Level 2, requiring substantial support. What did substantial support mean? Would this be for his entire life, would he outgrow needing support? Would he ever have the ability to speak and communicate? So many questions. And a million answers, because everyone that has Autism, may have an autism diagnosis, but there is a saying in the Autism community, “If you have met one person with autism, you have met one person with Autism.” Autism Spectrum Disorder affects each individual differently and a treatment or therapy that works well for one person may have no effect on another person.
Fast forward….17 months later and he now has a vocabulary of over 100+ words. I have lost count. Does he use them in sentences or phrases? Not in ones that the world of literature would understand, but he does share with us his needs and wants. For example, if he wants a bowl of cereal to eat-his request sounds like this “bowl-cereal-milk”. Short and fast words. If he knows we are going to the store, he may say “maw-car-shop” and his new favorite saying when he wants his favorite candy (M&M’s). “Me-M’s”.
There are times I don’t understand the words he is trying to vocalize and when all else fails, we grab his PECS (Picture Exchange communication system) (also known as visual support pictures) and he goes through the book to convey his needs. We thank God daily that his brain has unlocked his voice and he can use words to communicate with us. We thank the Speech Therapists and Early Intervention Specialists that saw promise and hope in him and never gave up. He has been in Speech Therapy for over a year and a half and (his official diagnosis is Expressive/Receptive Language Disorder) will continue until such time he no longer requires it.
Living with someone on the spectrum isn’t always easy, but when you love someone, you will do whatever is necessary to help them live the fullest life possible.
He also has a condition known as Sensory Processing Disorder. He is known as a Sensory Seeker that requires a lot of sensory input, he can only get by jumping, spinning, bouncing, playing hard, running fast and stopping, banging his head repeatedly and he does not comprehend the word danger or safe or stop or no when it comes to danger. He is a flight risk. An elopement risk. He is fast. He reminds me of the cartoon character “the Roadrunner” and sometime’s the “Tasmanian devil” all rolled into one. He doesn’t like the floor area to be clean for any length of time, the more mess, and chaos, the better.
But he is also known as a Sensory Avoider when it comes to loud noises, bright lights and the way some clothing or objects feel (tactile). He loves the water. Not drinking it, unless it’s in my cup and then that is a totally different story, but again, he has no sense of danger. The water could be 1 ” deep or 6 ‘ deep and it wouldn’t matter to him, it’s water and he loves playing in it. There have been a few times in the last several months, as the leaves fell from the trees and exposed the creek that runs behind our home that he would find it, on the many days he has escaped from our home. And we are very proactive and have extra locks, up high, presumably so he couldn’t reach them or open the doors to the outside on his own. However, he reminds me of an engineer. He will work at something, until he figures out how it works, to his advantage. Child safety gates used to be enough to keep him contained, but no matter how difficult they may be for an adult to open, he has figured out the mechanisms enough to open them on his own. The same with the door locking mechanisms. He is very smart.
Going on outings with him require strategic planning. Holding his hand is simply not enough because he has great strength and fortitude and can easily wriggle out of your hold and be gone in a flash. So now, he wears an Alert Me Band that will alert anyone if he is found running loose on his own that he has Autism and he is a runner and there are phone numbers embedded on the bracelet so we can have contact with them to return him to safety. That’s just one precaution that is taken. We do not go on many “spur of the moment” trips or spontaneous outings, because one person may not be enough to handle him. Going to friends’ homes isn’t something we take lightly because telling him not to touch fragile objects or climb isn’t something that he “gets”.
I share all this with you because if you know anyone on the Autism Spectrum when they are well behaved, it takes great strength for them to “hold it all together” to fit into what society accepts as normal behaviors. Most people on the spectrum require a certain level of routines and structure to function without having meltdowns and meltdowns are totally different from tantrums. To view them, they may appear the same. But tantrums are when a child does not get what they want. A meltdown is a reaction to something happening in their brain they have no control over and can’t just “stop it” or “dry it up” and move on. I think that was the hardest concept for us to learn and differentiate between the two.
So, Mr. T. has overcome a lot of delays, but he still has a way to go to be equal to his peers and he may never be equal in the eyes of the world, but he is no less because he is different. His brain is wired differently. He sees things differently and understands them differently. And he is much like any other three year old in many ways. He will push your buttons and see what he can get away with, but doesn’t always understand what he can’t get away with or why it is wrong or dangerous or bad. He knows what hot means, but isn’t afraid to touch something hot, even if he would risk burning himself. The concept of hot is lost and may never be understood. No one knows. Only God knows.
Now, I know this is a lot of information to throw out there, but he is so much a part of our daily life, that I can’t imagine not sharing his story. If his story can help others that are going through what we face every day and it helps to let you know that you are not alone when you get the diagnosis or when someone mentions something that seems foreign to you, don’t fret. It can be overwhelming. But you don’t have to walk alone. There are many support groups and organizations that are available to help you and your special person get the assistance and help they need.
Don’t be afraid to ask questions, as many times as you need to. Even if you feel like you already asked the question. And remember, you know your person better than anyone else. You see them every day. You know what you’ve tried and what works and what doesn’t. The reason it is so difficult, in my opinion for medical professionals to help is the spectrum is just that, a variety of problems that encompass more than the mind can comprehend. Some people grieve when they hear the diagnosis, other’s rejoice because they finally have answers. There is no right or wrong way to feel, just remember that the person that you loved before the diagnosis, is the same person you will continue to love after it.
I will share more about Mr. T and his journey through this maze called life because his story has just begun. He was recently diagnosed with Epilepsy and that has created a whole new area of learning and reacting and caring.
But for today I will say this one last thing. God created all of us. We are all wonderfully and fearfully made. In His image.
Psalm 139:14 New International Version (NIV)
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
Mr. T. and I look forward to sharing his journey of living with Autism. Different not less.
May you know how much Jesus Loves you~right where you are.
Blessings to each and every one of you~Carlene