Tuesday, October 13, 2009

Um, Yeah.

So the school year is in full swing. School for most New Jersey children starts after labor day.

David has two classmates right now. Nice, right?

His team decided that we, the parents, needed parent training to help David be more independent and to redirect undesireable behaviors.

What that really means is that for every waking moment that David has, he can't be alone. Every waking moment has to be filled with an activity plus potty training every 15 minutes.

So, for the last month, it's been ALL DAVID ALL THE TIME. Like- it wasn't before. Now, however, now we're in Defcon 4.

We're tired. We're all so very tired. I think we're tired of each other.

We've been hyper attentive of David for about a month now,

During this time. David has been successful in using the potty about a dozen times and once at school.

We have been able to remove the bindings that kept our dining room chairs attached to the table so David can't throw the chairs and use them as playground equipment.

David is using more self help skills. He can wash his hands and pull his pull-up back to the on position after toileting. David is back in his own room (Can I get an AMEN?!)

David is more verbal now too. He's using words and phrases with regularity and he is using his words appropriately. He says "okay" when asked to do something. He says "oh-oh" when he drops something. His teacher was too slow to begin the end of day circle time and he told her, "Let's go!" He says "hi" and "bye" sometimes.

David is also mastering his ABA program tasks and moving onto others.

Yes, there has been progress since we have been adhering to the parent training portion of our therapy. Progress, discovering, frustration, and anger.

Did I mention anger?

Why yes I did.

Like a lot of married couples, my husband and I argue over the same issues over and over. He doesn't feel appreciated, what I refer to as "Needing a parade in my honor because I washed the dishes" syndrome and I feel like I do more than my fair share for David and our home, What he refers to as "What the hell are you talking about?!" This argument turned really ugly really fast. It was one of those arguments that either makes a marriage stronger or ends it. I don't think either of us knows where we are right now. We're just doing the one day at a time thing.

We're tired. Living with autism everyday is exhausting and it doesn't get easier as our son grows older. He has more needs. He needs to be taught more skills to shorten the gap between him and his neurotypical peers. He has to get ready for kindergarten next September. He needs to be potty trained ASAP. On and on, everyday, every waking moment of his day. There is no time off for holidays, or illness, or muscle aches and pains. Sometimes it's one step forward and two steps back. The frustration wears me down. The slowness of mastery of tasks wears me down. The never-ending, all consuming world of autism in which I live wears me down.

Then there are those moments when I know all that hard work paid off. The way David looks at me and smiles when I come home from work. The way we can now play with building blocks while we listen to music. He used to chew the plastic blocks, clamping down on them so tightly that they couldn't be used to build with. He can invite me into his bed for a cuddle and say "bye DAD DEE" as he's heading out the door to run errands with me.

It's a life that's good and bad and ugly. It's a life of challenge and reward. It's a life of surprises and IEPs and teams and school buses that are too big.

It's a life and it's mine.

2 comments:

furious said...

Good for you and David! Sounds like he is coming along wonderfully. I know what you mean about arguing about the kids. ugh.

Deanna said...

This sounds kind of like my life too. I'm not very consistent though and don't remember to take my almost 4 year old to the bathroom regularly.
Having an autistic child does add a lot of extra stress and a lot falls on the mom. I hope you can get some rest and help around the house too. I can relate!
It sounds like David is really improving! Wonderful!!