Thursday, 12 March 2009
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Growing Up and Old With Autism
I recently joined an online support group for parents of teens and adults with developmental disabilities. There are so many things I need to know to get ready for Alex’s entry into adulthood. There are issues such as becoming his guardian once he turns 18, finding him a job or activity once he ages out of school, and figuring out where he will live once his father and I get to that place where we can’t care for Alex anymore. That very thought terrifies me.
One of the first threads I read involved parents trying to find more suitable living arrangements for their adult children. These parents are older and their children present behavioral challenges and cannot live alone.
Being that Illinois is living in the dark ages as far as care of adults with disabilities, funding is hard to come by and parents are struggling with trying to do the right things for their children. When parents can’t afford private care facilities, they MUST rely on government. The average wait time to get into a state funded facility across our country is about a decade and in Illinois, that wait is closer to 15 years long. I digress.
One mom was struggling with her son’s living arrangements. He is very unhappy in his group home and it is creating more behavioral problems than usual. He constantly talks about how he wants to go home. He has this phrase…”I want to go back to the yellow house.” That is where his parents live.
I read that entry and I pictured Alex in that situation and I just broke down. I am still crying. I know this mom is trying to do what is right for her son. There is no doubt that she is trying to prepare him for the years ahead, when she and her husband are gone. Yet, something in me just screams that if it were me…I would go get my son and I would bring him home. She must be a very strong woman to not do that. As emotional as I am, I know that bringing him home to her could do him more harm than good. It could set back his progress. Terrible things could happen should something happen and he be alone in the house.
I really can’t say how much I hate the idea of me leaving Alex. I would sell my soul to be able to take care of him for the rest of his life. He is such a joy and so loving and gentle and fun. Yes, he has his days but don’t we all? The idea of leaving him throws me into a world of panic and anxiety and depression. I hate the idea of him living somewhere that isn’t a real home for him. I hate the idea of people caring for him because they are paid to rather than because they love him. I hate the idea that he may one day think I abandoned him or don’t want him. I have spent the majority of my own life feeling like I don't belong and being lonely. I never wanted that for my children.
When I hear parents say they wouldn’t want a cure for their child’s Autism, I get so conflicted. I love my son just the way he is and I wouldn't trade him for 3 "normal" kids. He has brought me endless joy and has taught me more than I could ever teach him. At the same time, I do not love his future. I do not love the limits some random and mysterious smurfing disorder places on him. It isn’t supposed to be like this. No parent should have to struggle with these concepts. No parent should have to figure out how to provide for their adult children or how to make sure they are well cared for and protected after their own death.
It is times like these that make me say…I hate Autism. I know many parents and higher functioning autists would condemn me for such a statement and they are free to do so. I know how I feel, I know why, and I know how much I adore my son.
Do you worry about your children's future after you're gone? Would you be terrified if you were in my situation?
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About the Author
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- From: mamaelephant
- Name: mamaelephant
- About Me: Hi! I am Mama Elephant and I am both a college student and SAHM to a mischievous teenage son, who happens to have Autism, and an infant daughter. It is a practice in time management. Raising a child with special needs presents challenges disguised as impossibilities as well as rewards beyond the imagination and I write about both.
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Comments (12)
I've supervised autistic children in a co-op in highschool. Their behaviour can be rowdy. I've also watched autistic kids on tv, again they can be troublesome... but I think you should find out all about the condition, get second professional and personal opinions and then make an informed decision to react.
As the parent of a child with Down syndrome whom wouldn't change a single thing about my angel; I can say without hesitation, I totally understand where you are coming from.
Em is only two, but we have to have plans in place. We are lucky that she comes from such a large family. Our two oldest have already said that IF the time comes; they will be Emily's caretaker.
Your feelings are valid and I doubt that there is a parent out there that hasn't had the same thoughts.
@Parsimony@xanga - Neurotypical children can be rowdy and troublesome, too. What does that have to do with anything?
It seems like you think this mother knows little to nothing about her son's own condition. If you'd read her blog at all, you'd know that the opposite is true.
as a teacher of children with disabilities--mr and aut i have to say that as educators and advocates we have to prepare our children from day one to live on their own...we have to fight every battle and win it several times before we move on to another.
one of the hardest things we teach our children is that life is not always fair. yes its not fair that they are already burdened with differing abilities...but no matter who you are--life is not fair. as a teacher i have to make hard choices for kids and then work them through them--learning coping skills and how to deal with disappointments--the nice thing about these kids is that we have many victories, even though they are small.
yes its hard to think about our children and what they will do when mom and dad are gone but the best thing we can do is to prepare them for the future--as you would for any other child. and yes its harder bc of individual differences but every child faces these challenges--just on different levels.
lastly, remember that happiness means different things to different people. for some its going to work to a job that excites and interests people, living away from home, and having fun with friends. i teach kids with many needs--to other it would not be a picnic for others--and being an investment banker would be hell on wheels for me. we have ot learn to acknowledge sucess and happiness in all its forms!
(i'm not a parent and i'm sure that might change my sentiment one day but for now...this is me)
I'm terrified, and I'm not even in your position. I think I understand how you feel, though. My aunt is retarded, and I don't know how my generation of the family will be able to take care of her. Sorry, that was a side note. Perhaps there is a family member who is willing to take him under his/her wing? I'm sorry there isn't much advice I can offer you, but I do wish you the best. I'm sure everything will be fine someday. Good luck!
I am so glad you wrote what you did. I am the mother of a 13-year-old autistic daughter, and I struggle with the same thoughts and emotions that you expressed.
Why I love autism: my daughter has a perpetual innocence that is beautiful. I see it every year she is excited for Santa and when she belts out the theme song to Winnie the Pooh in her monotonic, yet beautiful, voice. Her moments of joy are true.
Why I hate autism: She has to battle her stringent need for routine on a daily basis and faces the challenge of keeping her affect stable every moment, so she wont have to deal with an emotion that will throw her world and emotion into an out of control tail spin.
What will we do as she gets older? All I can say is we try and teach her a little something everyday that promotes her independence. We might be still working on her independently washing her hair, but she sure knows how to make a piece of toast for herself. I hope all of that will eventually build, and give her the ability to live a life that brings her peace and happiness. I think we can all only take it one day at a time, be responsible, and be prepared and seek to meet her new developmental needs as they arise.
There are so many helps out there for children who have autism. I can't see why anyone wouldn't want to take advantage of them. For instance there are great "autistic diets out there that has proven to help heal autism. One that comes immediately to mind is Julie Matthews ideas outlined in her latest book "Nourishing Hope for Autism" If improving an autistic child's life by simply changing their diet can make huge improvements on their condition, why wouldn't parents take advantage of it?
I wish you luck.
@LadyLibellule@xanga - I only answered what I knew of the topic. As for the real questions, I don't have children of my own so I don't know how I'd behave.
(first... I don't really know anything other than generalizations about Autism)
Do the homes that he could possibly eventually live in allow for gradual introduction? I mean, would it be possible to start now taking him to visit during a meal time or rec. time? Maybe just a little bit each week or day (as it sounds like daily routine is important)? so that in 10 years he could more easily transition from being at home to being in a new place that he loves and is used to? It seems to me that something like that would be ideal. Lots of devotion - but ideal. And obviously you have devotion enough for him with your motherly love desiring the best for him at any cost.
@amysfantastic5 - I can't help but adore that baby in your profile picture. She's so adorable!!