A Heads Up for all you Moms of children on the Autistic Spectrum.....

You are busy...going from day to day and sometimes minute by minute with your kids on the Spectrum.  You don't have time to think past the next few hours much less years down the road.  We get it...Really, we do.  You know why we get it?  Because it seems like yesterday that we were there, too.  My young adults are now 25 years old and 20 years old...the older is on the spectrum and the younger is studying to help those on the spectrum.  Our whole life seems to revolve around "The Spectrum".  I can honestly say, though, that it seems like just yesterday that we were juggling IEPs, 504s, therapists, doctors, and meltdowns.  I am exhausted just thinking about those days of virtually no sleep and constant worry.  I don't want to add to your burden, but it doesn't get any better.  I'm sorry, but it just doesn't.  The worries change, but they are still constantly there...wearing away at our patience and hope.

We all know how important early intervention is for our kids and we also know that our educational system has requirements that they must meet to ensure our kids get the help they need to succeed.  Before, during, and after our son was diagnosed in the late 1990s, there just wasn't the amount of information available to us as there is available to you today.  We were stumbling in the dark in more ways than one.  Our son was being treated for one thing or another from the time he was in second grade and it wasn't until he was in seventh grade that we finally got an answer.....Asperger's Syndrome.  During those early years, we didn't know that we were entitled to an evaluation by the Child Study Team.  In fact, we were told that our son was a "behavioral" problem...even though he was exceptionally bright, he didn't qualify for advanced classes because he couldn't "behave".  We didn't realize that he was being relentlessly bullied by his classmates, their parents, and the teachers and administrators we trusted to help him.  Yes, there were a few that went above and beyond to help him, but they were few and far between.  His school years, for lack of a better term, sucked.  He suffered every indignity and coped as best he could.  We didn't even find out the worst of it until years later.  I still feel like I failed him even though I did all that I could with what I knew at the time.  So, yes I know how you feel...I know your pain and I know your happiness when some progress is made however small that may be.

Here is the truth....it gets worse.  Once your child ages out of the system at 21, what are you going to do then?  I know you can't, won't, and don't want to think about it, but we are living it.  Let me tell you, the prospects are bleak.  But, we CAN and we WILL change this and you will probably benefit from it more than we will because of the bureaucracy we are facing now.  Our son dropped out of high school just before his 21st birthday and in the fall of his Senior Year.  He was in a bad placement and just could not bear the hurdles he faced each day.  It was hard, but we supported him.  We are lucky because we can afford to take care of our son's needs...at least for now.  He spent years being up and down not knowing what he was going to do with his life and frustrated by the lack of options for him.  We got lucky...an angel in disguise moved in next door and saw in our son what others couldn't or wouldn't see.  She has worked for him and with him for years now using RDI and boatloads of patience.  She offered him a position in her company and his self-esteem slowly started improving.  He got his GED last fall as well as his motorcycle license and is looking into classes at our local community college.  He is high-functioning most of the time but there are times when he is almost paralyzed by his depression and anxieties.  Those are the worst days for us, too.  But what is going to happen when we are gone or no longer able to support him as we do today?

Our daughter will always be available to help him but she also has her own life to live.  He will need support from someone at various times of his life...support he now gets from us.  One of the worst things to happen is to have your child die before you do....I know because I watched my parents lose two of their three children.  It is almost as bad, though, to think of your special needs child surviving without you.  It is scary....will someone take advantage of him?  hurt him physically? mentally? financially? emotionally?  Our kids have a hard enough time trusting people on their best days...how are they going to trust when their world is churning from the loss of their parents.  Extended families aren't always available...they aren't in our case.  Who can you trust?

Well, I believe we have to trust other parents who have lived lives like ours.  Other parents of special needs kids and young adults as well as trusted caregivers who understand how our kids feel, think, and live.  There is a group of such people working through the red tape of setting up a foundation that will help our young adults.  I finally have some hope...not just for the future of my family, but for all of your kids who will eventually age out of required assistance.  We are your future...we are parents of adults with ASD in all it's various forms.  We are working to provide a safety net for not only our young adults, but for your future adults as well.  Please help us by keeping us in your thoughts and prayers while we try to get this initiative off the ground and ready.  While I am not personally invested in Touchdown Communities as of yet, I feel very strongly that it will be what saves our young adults. I have listened to Mr. Downes and his associates.  I have met his children and I know that he is working not just because of them, but because of all the kids like them.  My young adults have worked with his kids and with Ms. Majewski and I have seen the changes made in the lives of families like ours.

For more information, please go to TouchdownCommunities.com or visit their Facebook page..."Like" it if you feel as strongly as I do about the future for our families.  While New Jersey is the focus of this grassroots campaign, the goal for the future is facilities on a national and international scale.  Even if you don't feel that this is an option for your future, please support them as they help establish new mandates and requirements so that adults on the spectrum are protected.  They are laying the groundwork for the future of all our kids and the work is hard...money is tight, laws need to be made and enforced, and most importantly, people need to be educated about our kids...that Autism does not equal murderer or terrorist, retarded or stupid.  Education is one of the biggest hurdles facing our kids in light of recent events in our country and around the world.  As the folks behind Touchdown Communities negotiate the political, financial, and education reefs, please raise your voice and ask to be heard.  Because here is the real truth of this post...NO ONE WILL HELP OUR YOUNG ADULTS UNLESS WE LEAD THE WAY.