My son, F, will be 19 years old this April. Ft has cerebral palsy. He is described as a spastic quad. He sits in a wheelchair that requires a lot of space to accommodate. It's not one of your basic run-of- the-mill chairs that you can get from any medical supply place. It's a Quickie Iris. His chair tilts so he can comfortably look at the world from a reclined position as needed. He's got head switches attached to his head rest for his fancy future communication device. He has a custom molded seat to accommodate his scoliosis. He has footrests and ankle straps to hold those legs down so he can't wiggle forward. It has all the bells and whistles my spastic quad boy could desire. Except a motor and a way for him to control it, because not one person in his life ever thought he'd be capable to maneuver himself. I myself am still hopeful that he may get the chance and I think he is too.
F has cortical vision impairment. Which in a nutshell means the vision center of his brain does not work to interpret what his eyes see. So he has difficulty seeing in a new environment. His visual field gets cluttered when there are too many things in it. High contrast can be helpful with bright colors. He also needs visual consistency. He needs things to stay the same for him to recognize them. He is considered legally blind. He doesn't visually track well and objects get lost when he tries to follow them. But what he can do with his eyes is move them from left to right and right to left to assist us with his "yes and no" answers. He can with those beautiful green eyes look right into my eyes and I know he's looking right at me. I am thankful for his eye contact and that he can recognize our faces.
F cannot speak, but he has a lot to say. He has a thought and an opinion on just about everything. This is where I get frustrated with people. They seem to think that because he sits in a wheelchair and he cannot speak that he automatically has a low IQ and is deaf. This is false. He's a great listener and if you talk to him normally he might actually pay attention to you. He can tell if your genuine and care about interacting with him. If you turn up the volume and talk slowly you are not likely to win his friendship. Forrest knows about a lot of things and he can communicate. You just have to know how to communicate with him. He answers yes and no with a head turn or an eye gaze. Right being yes and left being no. He has head switches that hook to a computer that has preformed statements that he can control to engage in a limited conversation. He has a low tech method of a flip book on his iPhone and iPad which is a layer of options that is specifically to assist the user in engage in a more layered conversation. He has to teach people all the time how to communicate with him and a lot of people just can't get it. It's not his fault if your not smart enough to catch on so don't blame him.
F is funny. He has the greatest sense of humor of anyone I know. He's sarcastic and will make fun of you, which I love. He's always teaching us to just laugh at ourselves. Most people don't get his humor. Usually most people just think he's happy because he's got that "look" that leads them to believe that there is really nothing intellectual going on upstairs. But those close to him we know and we get it. We will talk and laugh about it later! He loves books, music, history, science, he is a eager for knowledge. He has memory and recall too. For some reason when he used to go to school they didn't think he was teachable or that he remembered things. Of course, they had no really reason as to why they believed this to be so other than he has that "look" that people associate with very low intelligence.
F has no independent skills and relies on others for assistance with all of his daily needs. He has more patience than anyone I know. He has to trust in others to do some of the most important and personal things for him. He RARELY complains. When he does complain it's usually because he's uncomfortable or very fatigued. That's when he can crack the whip and get demanding. He's entitled to do so as far as I'm concerned.
F has health issues. He has chronic respiratory issues along with an asthma component that exacerbates things. The asthma thing always throws a twist on things since it causes sensitivity to odors, perfumes, air quality, the wind, etc. He has seizures which are uncontrolled by medication. He also has some GI issues as well. I have to say that these things have improved due to his new diet. He's on a very strict modified Atkins diet. He was too old to try the Ketogenic diet. This diet has improved so many of his health issues. He's more healthy and stable now than he has in a long time. His seizures have really improved. He's been feeling really good since starting the diet. He may even begin having his medications reduced for the first time in YEARS!!!
That's my son in a summary. We know from experience that the first thing people want to know about him is "what's wrong with him?" We don't think there is anything "wrong" with him. He isn't perfectly healthy or perfectly abled, but he's perfectly Forrest.
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