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Growing Up and Old

support group 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 of 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, the 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 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.

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0 thoughts on “Growing Up and Old

  • I couldn’t imagine going through what you are going through. I will pray for you, your son, and all the other families that go through this struggle

    Blessed Be

  • Excellent article! I share all of your concerns about my own son. He has a much younger sister, but that is a lot to put on a sibling.

    I am dumbfounded by statements about not wanting to cure autism. Absolutely dumbfounded. I think some people don’t understand the challenges of severe mental disabilities to not only the parents, but the child.

    I’m very glad you came forward to share.

  • Thanks for this information!!!

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  • I have searched for people to sub to that are in this situation. I work as a Behavior Analyst / Qualified Mental Retardation Professional for the State of MN; I’ve worked in a variety of places (crisis homes, intermediate care facilities, in-home support) and have done all kinds of assessments (environmental, medication, functional, adaptive behavior) and basically write behavior programs for a living. I adore it. I love it. There is no other job in the world that could ever trump the one that I have- I simply adore the men I work with and am amazed on a daily basis about how much they teach me about life. I hope you don’t mind the sub!

  • @SarahAriella@xanga

    Thanks for the info but I guess since I live in Indiana it won’t do me much good. I will google ASD and see what I can come up with.

  • @SarahAriella@xanga – I don’t mean to offend you if you are not religious but I will be praying for God to bring someone in to your life to give you the comfort and support that you need. You aer right most people are afraid of anyone who is not “just like them”… but not everyone is.

  • @mom1945@xanga – The support group is a local one for parents in the state of Illinois.  It is actually on Yahoo Groups.  They have a ton of groups dealing with ASD and all the different “camps” from various theories of causes to treatments and local resources. 

    @echois23@xanga – Unfortunately, the only person in my family that I would even remotely trust is my sister and while she has agreed to take him in the past, she just gave birth to a daughter with serious physical problems and they have no no way of knowing if there will be any sort of intellectual disabilities yet.  This means she may not be in a position to take my son when the time comes.  My husband and I have no one else that is even remotely interested.  Most people can’t get beyond the outward challenges of ASD to see the individual for who they really are underneath the Autism. 

  • I think this is one of the biggest issues parents of Autistic/Asperger children face. Transiting into adulthood is very difficult for a NT teen but for the AS person it is BIG.

    Would you care to share the name of the group for parents of teens and adults with developmental disabilities, or a website? I could sure use the support. My heart goes out to you because I’m dealing with the same issues!

    I got guardianship just in the nick of time to prevent my 21 yr old from making a horrible life decision. Not reading social cues also keeps them from comprehending an unsavory character’s wrong motives and they are easily taken advantage of.

  • I can feel your love for your son. Do you not have any family or friends who would be willing to take him if something happened to you? With the three children I have custody of if something happened to me they would still be with family. I have a senior adult friend whose adult son has a pretty severe case of downs syndrome he comes and visits us on a regular basis and is a big part of our lives we have an agreement to let him live with us if anything were to happen to her. She has no family to help her and he is the sweetest man you could ever hope to meet. she is healthy and strong but she said just knowing he will be cared for has made her life easier. I never really understood that I guess until I read your post. I hope you find someone you can depend on to step in if the need arises.

  • That last paragraph summed up EVERYTHING I think about on a daily basis. My brother is autistic, and while it isn’t the same since he isn’t my son, I worry about him constantly.  I don’t trust anyone but myself or my parents to be able to take care of him in the best way possible, and I’m scared of what he’ll go through mentally when we’re all gone.  If something happens to my parents, I take care of him (he’s 3 and I’m 19) but what if something happens to me?  I hate thinking about it because it breaks my heart.


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