Getting Older (Me Too)
November 11, 2008 by Kristina Chew, PhD
Filed under Health
In just about one month, I turn 40. Charlie is 11 1/2—-so when I’m 50, he’ll be 21, and when I’m 65, he’ll be 36, almost as old as I am now.
Where will he be living? (With us?) What will he be doing? (School will be long over.) What opportunities will there be for him, or not?
Yesterday’s Bergen Record describes Debbie Legutko, whose two adults sons—24-year-old Derek and 21-year-old Frank—live with her and her husband. Derek is autistic and holds two part-time jobs. Frank requires intensive medical care and is on a ventilator and oxygen.
The Bergen Record notes that some 8,000 individuals with developmental disabilities are on the waiting list for residential supports and services at New Jersey’s Department of Human Services’ Division of Developmental Disabilities. About half live with their parents and “thousands” have been on the waiting list for year (one person was on the list for 23 years). In 2007, there were 24 new placements.
Kind of goes without saying that we have a lot of work ahead of us, for a project that’s going to be part of the rest of my life and is it worth it.
I think about this often, and the coddling mother side of me says “Well, of course he’ll live with us the rest of our lives!”. But, that’s just dumb and I know he’ll have to be independent someday! I hope things get better in the future for this new cycle of kids coming up! They have to !
I often wonder where my son will be once he reaches adulthood.
I’m also wonder where the mindsets of our government (state and federal) will be years for now.
Will health insurance issues be a thing of the past or a recurring theme in the future?
Will there be an increase in the number of behavioral specialists or will the lack of them still be an issue?
So many concerns…
To only have a crystal ball.
I love this post because it is a very real fear that many of us have that have special needs kids. I will be 40 when my son is 21. My baby will be 19 at that time. I am beginning to look into creating my own group residential home for developmentally disabled adults in our area. I want my son to be able to live away from home like his other siblings will but not be abused or neglected either. In my research on this I have learned that a lot of other parents have done the same thing to ensure that their adult child has a place to go when they are no longer on this earth.
My son is already in a residential home (he’s 13), and we’ve already started talking with the funding ministry and his house about what we want his adult placement to look like. There are a lot of options to consider- whether he’d rather be in an apartment with one or two other people, in a house, etc. etc. One of the neat things that I’ve heard about lately is a program to let autistic adults own the house that they live in, so they become part of a trust so that part of their funding money goes to building up equity for themselves.
My other daughter has already told me that she wants to move out when her sister goes to University, so we’ve started talks with the Ministry about that as well. Of course she’s welcome to stay with us as long as she wants, but in her mind, people move out when they grow up. It’s going to be interesting, to say the least!
I was recently diagnosed as an adult,with atypical autism.I have never worked,and during the times when I have no fever,I have severe cognitive deficits,and am prone to eloping.I also tend to get a lot “more autistic”.
I am just recovering from carditis,which I learned yesterday,was due to a flareup of shingles,my third.I get at lest two such serious illnesses a year,and lots of “lesser” stuff in between.
I spent most of yesterday at the hospital,and two hours of this,was in talking to the team that diagnosed me with autism.They are very concerned that I am not able to care for myself sufficiently to live on my own.They are very pushy about getting me into a state sponsored group home,because of the severity of my cognitive,and developmental disabilities.I was also told the waiting list was five years or more,so I needed to get on it RIGHT NOW !
Is there any way to avoid this ?The only relatives I have are my 79 year old mother,and my schizophrenic sister,whose disease is worse than mine.I dread the thought of having to give up my independence,having to account to another person for every penny I spend,having my internet usage monitored,and having to get rid of most of my cats and dogs,my bonsai,and my large,valuable record collection,which I continue to add to.
If anybody has any suggestions,I would love to hear them.
@Roger, I don’t have any suggestions immediately—am thinking on it—–if I may ask, what would be an ideal housing situation for you? (And hope I am not being intrusive in asking.) —- very very best—-
Roger, I have Aspergers and I work.
I do not want to be a ward of the state or give up my financial and personal freedom either. That is never going to happen.
Please consider really applying yourself to being able to live on your own and getting a Pell grant to go get some education like paralegal, electronics, or computer science. Our kind do well in these fields and the pay and benefits are good.
I was considered retarded as a child and I have a hearing processing disorder. I was unable to finish college. However, my life is more than a label of what my disabilities are.
Only you can decide what your limitations are going to be and what you can and cannot live with. Since you have the ability to voice these concerns you might have to ability to choose another path than the professionals have laid out for you.
I like working and making money. When I was a child no one thought I would be successful but they were wrong.
Good Luck,
~Sarah
Sarah,
My cognitive function varies greatly.There are days like today,when I know I am losing it.I am heading for another string of bad days,when I have no idea what is going on.This is one of the big differences between autism,and Asperger’s.
By this time tomorrow I may be headbanging again,or simply staring into space,with no idea who or where I am.In other words,I revert to the way I was when I was a little kid.
These spells are not permanent,they do clear up. The fact that they come and go,is an indication I have improved since I was a child.
Roger, is there anything you can do to get in your own head space and redirect yourself? Have you ever meditated? It helps me. You can used Google to look into some of these ideas. If you have not tried…it certainly will not hurt you.
I sometimes have a desire to do things that I know I should not do. I have overcome these impulses because I do not like to live that way.
Since you say your spells come and go this could be how your body reacts to stress. Have your tried some stress management…taking up art or yoga? I do yoga and I started running and I have seen a great reduction in stimming and obsessive thoughts.
When I feel good about things and am in control of my life it is easier to manage the little things that used to set me off.
~Sarah