The Looming Group Home

After Noah threw me to the ground and broke my hip two years ago, some folks felt he was too dangerous for us to have at home.  Look into a group home, they said.  I did some research, talked to many families whose "kids" are already in group homes, and went to see one in my community.

Of paramount importance is that Marc and I are older parents, I'm almost 57 and he's 67.  For how much longer can we continue to care for a high-maintenance young adult, and eventually not a young adult any more, in our home?

Bottom line is, just about every family I spoke to, said their kid is doing better since (s)he moved out.  But only one said that living in the group home, is like living in their own home.  This is the crux of the matter.

Noah loves his home.  He loves his room, with his computer and his TV and his U-Verse and VCR and Wii and DVD player, but more than that, he loves to be home with his family.  He is always happiest when we are all here sitting around together.  Even if he chooses not to join us, he likes knowing we are all here.

When I come home, generally I am greeted with:  "Mom, where have you been? I missed you!" or "Mom...I love you to pieces."  

I'm not thinking that such a person will happily pack his bags, or watch his bags being packed, and move into a house with strangers.

Ah, but then there's the dark side.  Noah has an evil twin, who stood over me just now and spit at me  because I told him No.  This time, the No was because he wants to go back to the day camp at JCC.  He attended JCC summer camp for maybe ten years.  He enjoyed going every day, but he was generally a behavior problem there, and when he grew over 6' tall and weighed over 200 lbs, and became aggressive, to counselors as well as other campers, they declined to take him back two years ago.  Frequently he talks about signing him back up, but when we tell him JCC won't take him back, he gets angry.  And spits.

Sometimes I wonder what my life would be like without the constant friction of living with autism.  What would it be like not to be woken up every day at 5 am by the blasting voice memos from Noah's computer?  Or having to always make sure I have someone to watch him when I go to work or to the supermarket, since he can't be home alone?  Not to mention constantly de-escalating his occasional but regular violent episodes before someone gets hurt, or hurt again?


Noah would need to go into a behavioral group home, with  much smaller staff-to-resident ratio, and a much "barer" home, so that aggression against property would be minimal.  Chances are the other residents would be lower-functioning, meaning his social interactions may be limited.  This is a big negative, as my boy is very, very social.  Unfortunately, he's also very behavioral.

So, the search for a suitable group home continues.  I don't want to wait until we're under the gun and we have to move him out..but I'm not sure either Noah or I is ready yet.

Gray Hair

On Friday I did something I never had to do before - plucked gray hairs out of my head.  I've been so vain about the fact that at 55 years old, had so few gray hairs as to be nonexistent.  Well, not anymore!

What was far scarier, though, was seeing a few of the ARC Broward clients arrive that  morning for their day program.  They are all developmentally delayed, some autism, some mentally retarded, some other diagnoses.  I'll be looking at this program, and others like it, for Noah soon, so I'm trying to be observant about the details.  The detail that shocked me, horrified me, was the little old lady with the gray hair, wearing a helmet on her head.  Was she wearing the helmet because she was a football fan?  Or because she just liked helmets?  Not likely.  More likely, it was because she was self-injurious.  Even at her age.

I don't believe in my heart of hearts that a cure for autism is coming down the pike anytime soon.  So chances are that one day, sooner that I'd like,  it will be Noah, with gray hair, in a program like this.  Hopefully his aggression will have mellowed out by then, or all the other program members will need to wear helmets.

In Another Life

Listening to Katy Perry's song "In Another Life," made me a little wistful yesterday.  In another life, I would have:

one child graduating from college this year and another one preparing to enter next year, not necessarily Ivy League, any old college would do;

a sweetly supportive husband with a great sense of humor and a mammoth bank account (hey, if we're going to dream, let's dream big);

planned a fulfilling career for myself, maybe gone to law school,  instead of just accepting jobs that led nowhere;

acquired a dog much sooner.

Pervasive Developmental Disorder (PDD)

Been thinking about the "pervasive" part of PDD.  I used to believe that if we could just get rid of the autism, Noah would be a delight to live with, a success at life, the person he was meant to be.  Then along came Stephen Shore, the famous Aspie, who said that autism is so pervasive, you cannot separate the person from the autism.  I was depressed for years after reading that, which I suspect is the opposite effect he wanted to have.  Last nite Noah was cuddled up next to me, and we were talking about books and music, and I started thinking about how lovely it would be if this was the "real" Noah.  Of course these moments in time are so fleeting, so rare, and soon enough he was back to his usual self, blasting the sound on his computer, being nasty to us and torturing the dog (that's the next blog post).  All of it just for attention, which by the way he does get 24/7.  I hate autism.

On Noah's 18th Birthday

The child is now an adult, well in the eyes of the State, anyway.  Of course, chances are that this "adult" will always be a child, emotionally, but unfortunately, his needs now encompass both those of a child and those of an adult. 

At this point, four days after his birthday, I'm extremely busy with all these must-be-done-now issues:

• Crisis tool -  pending (for four months and counting) at APD for more behavioral help
• PCA - getting the right person hired by CDC+ to work with Noah on the weekends
• Social Security - getting him declared disabled
• Guardianship - getting paperwork filed, and everything that entails, to declare me his guardian
• School - he's going to be a senior next year (yipes!) have to work with IEP team on his schedule

And then, when all that's over, I can focus on the future.


What will he do when the yellow bus no longer comes to the door in the morning?
Where will he live?
Who will take care of him if/when something happens to me?

And the biggest conundrum of all:

How will his future be impacted by the simple, inescapable fact that there's no money ?  No trust fund, no life insurance policy, no savings, no assets of any kind except for a house encumbered twice over and whose value keeps dropping?

Noah's sibling will most likely not be a presence in his life as they both age.  And I am aging at astronomical speed.  Not much time...