Originally posted 2014-06-08 17:29:26.
It is Sunday morning here in the Carter home. Daughter volunteered at a disabled/special needs baseball game on Saturday and well the rest of us were at home. We took the opportunity to literally do nothing. But that also means since nothing was done yesterday it has to be done today. Bad thing is this pale skin Irish girl will have to do some serious covering up when I go outside since the UV index is supposed to be high today. I have a garden to tend to. The bunny rabbits are taking over my broccoli plants which I think out of 6 or 7 plants I may have one that survives them. Maybe…
Since our special needs son graduated high school last year we have had to make sure he is always doing something. We thought about a job. Some have mentioned maybe a Walmart greeter but the safety aspect was a bit too much. See he is easily approachable and doesn’t understand that not everyone is his friend. Someone could approach him and tell him he needs to go with them and tell him that maybe one of us said to go with this person. He would go with them. They could offer him food he would take it. He just doesn’t understand. We have raised him to be as ”normal” as possible but for obvious reasons we can’t always do the ”normal” thing with him. We had considered him taking up some college classes but the local community college doesn’t offer anyone that could assist him and make sure he was getting to his classes. He could easily get lost or walk out. Autistic children/adults has a tendency to wander. So making sure there are boundaries to keep them safe is a must. I have always had to make sure someone was with him. He has had jobs before (while in school) that he would walk away from so certain safety measures had to be put in place. It is often scary to wonder what would happen if these measures weren’t in place.
As a single mother before I got married it always presented a bigger problem. Even now being married it is still one. We don’t go anywhere without him. We can’t leave him at home by himself. Just to go on a motorcycle ride with my husband is not easy because I have to make sure our daughter is able to watch him. With her getting ready to graduate high school and go off to college that presents an even bigger problem…no one else locally to watch him when we need it. I mean I have my mother and step father but they are like 2-3 hours away from me. I have friends here that is in the local special needs/special Olympics community but it is not quite the same. Since my best friend had to move to the land of hula dancing and contact ocean breezes it is a bit harder to just get a break.
I am sure others that have a special needs/autistic child/adult know what I am referring to. There are some that are more high functioning and are able to stay by themselves without too much trouble but some others you always have to have someone there….always. So vacationing or just doing someone spontaneous by yourself or your spouse is not in my playbook. Just going to the grocery store or even to doctors appointments…which can be really awkward when you have no one else there to watch him. My biological father just does not understand at all. He doesn’t understand what it actually takes to do something. Then people often wonder why majority of parents with a child with special needs are able to actually have a 9-5 job. I mean if I had a job that could pay me enough money to be able to pay someone to watch my child, one that has the ability to handle all of his medical needs, seizures, etc…and have money to make it cost effective…sure I would. But that would mean I would have to make at the least $25 an hour. Half of that would probably be for the person taking care of him. So next time you wonder why you see all these parents not working take all that into consideration. Taking care of a special needs child/adult is a 24 hour job. You aren’t off. Even when you aren’t with them you are always thinking like you are. It is funny because even my husband has learned to understand my thinking.
He is from Florida. His family is still there. The family has brought it up to my husband the possibility of moving back to Florida. Well …even my husband figured out right now. That is just not possible. When you have legal issues in the way of moving out of the state and having to redo all of it….that affects your decision. Not only that…the weather. It makes it harder to control seizures in hotter more humid climates. Yes it is still hot and humid in NC…but it is not as hot and humid here than in Florida.
I have to change the subject for a moment. Since my daughter is graduating here soon I noticed the awards (or lack there of) she was presented. It upsets me and my husband the amount of time, effort, heart, etc.. she has put in helping others, establishing Project Unify clubs for inclusion on local high schools…and all she get is an AVID cord. No A/B honor roll certificates (this high school doesn’t participate in that) …nothing. I have had several of the teachers and staff at her former school comment on my frustrations and said we all know what good she has done. I appreciate your words. I just hate that it isn’t being recognized. She doesn’t do all of it for the recognition. She doesn’t miss days at school to have to double down on her school work to volunteer and see the smiles and dedication of those competing in the Special Olympics and Special Olympics Project Unify.
She does it for the pure happiness and joy of watching them compete, feel included in something and does it because she knows what it has done for her brother. So I can’t be upset for those that don’t get the same enjoyment that we get. Too bad, it’s there loss.