Friday, March 14, 2008

Just Gotta Let It Go

A few weeks ago we took Nixon to be assessed for a speech delay at the local school district. The interview started off fine enough, with a Rn asking me health history questions. Shortly we were joined by an occupational therapist and a social worker. Nixon was doing his own thing, like he usually does, while I (crammed into a toddler sized chair at a toddler sized table) answered all sorts of questions. The OT and the SW observed Nixon while I finished answering the questions.

"Does he generally not notice people in his surroundings?" one of them asked.

"Oh, he just likes to do his own thing." I responded.

Suddenly the questions started to change focus. I was asked about eye contact, if he plays with toys, if he ever spins, if he ever flaps his hands, does he obsess over a certain object, does he have sensitivity issues?

"Doesn't every toddler?" I asked. I was getting nervous. No one was asking me about speech anymore.

"Does he show emotion...will he spontaneously hug and kiss?"

"Well...he generally doesn't like to be touchy-feely, and he absolutely refuses to kiss - but I can usually get a hug out of him."

"Does he have any problems with sensory issues...cold things, wet things?"

"He does not like anything on his hands...and he refuses to eat anything that is cold, or wet, or sticky. If his clotes get wet, even a tiny bit, he wants them changed. Unless its drool...then he doesn't seem to mind."

"Does he still mouth objects?" We all turn around to see what he is doing. He is playing with some plastic blocks...he has one in his mouth.

"Yes, he still does."

"How old is he again?" one of the three ask.

"Almost three" someone answers.

"Does he eat with a fork or spoon?"

"Well yes...kinda, sometimes. He's still a stuffer, so he will attempt it for a minute then resort to stuffing his face." I laughed nervously "Alot of toddlers do that though, right?"

"I notice he isn't using his finger on his right hand...he keeps it extended."

"Oh, yes...thats THE finger. It's his favorite. He likes to keep it ready for use." I laugh again "He sucks it."

At this point, alot of whispering back and forth between the Rn and the social worker starts. I catch the words "ON THE SPECTRUM" and "AUTISTIC".

I have capitalized these words, because thats how they felt as I heard them.

The occupational therapist decides to try a few things with him.

"Will he sit in a chair?" she asks.

"Um...maybe." I say. "Nix, come here a second." He ignores me because he has found a barn full of animals. He is taking them out and lining them up. "Bubbie...come to mama." He is not responding. I get up and go to get him. He freaks out and starts screaming and hitting me. I try to get him into the cube chair that they have provided me for him. It is impossible. He has become a screaming tornado of arms and legs. One of the ladies tries to help me and he spazzes even more. We give up and let him go. He runs to a corner of the room and yells at us in his strange "bubbie talk" while wagging his finger towards us.

The questions resume. At this point I am near tears.

"We think that he may be on the Autistic Spectrum." one finally says. "Maybe Aspergers, but probably PDD-NOS. Either way, we believe that he is higher funtioning." She smiles at me. After my brain recovers I respond meekly with "But he smiles...he makes eye contact."

"The spectrum is wide and there are varying degrees of symptoms. He does smile and makes eye contact, but he is generally un interested in any of the people in this room right now."

"Well, we always knew he was different." I stammer...the tears are starting to come out.

Since that day we have had a roller coaster ride of appointments, theories, tests, and way too much googling. We have gone from totally despondant to feeling that everyting will be fine to a kind of limbo where we have accepted that it is what it will be.

I guess the hardest part has been realizing that he is the same little man that he was before all of this...that the label is meaningless.

One thing that I have learned through all of this is that nothing happens quickly when you are trying to get help for a child who may fit into this spectrum. We are currently in que for a mariad of services...none of which will happen anytime in the next two months. It is a 3-4 month wait for evaluation through U of M - even though I work there. It is even longer through PC public schools. You can be the best advocate that you can - you can make the calls, leave the messages, and wait for the call backs, but the answer is always the same...there is a wait. It will be a while. There are so many ahead of you. The feeling of total helplessness is hard to battle.

In the end, I really believe that Nix will be OK. I think he always be a bit "different", but arent we all? So what if he wont touch cold that so bad? If he really doesn't care if he socializes with every person he comes into contact with why should I? He loves the people who are important, and the small things that he does to show it are worth a million empty gestures that we all display every day.

We are lucky...that I know from starting our group therapy through the PC schools. Some of the kids in his group are so locked away...their minds just not connecting with ours. I have witnessed the extremes of "The Spectrum" first hand and I know that we are no where near the extremes of the disease. Nixon is the tip of the iceberg.

We (I) have been fortunate to have the support of a fantastic family who have been through alot of their own sorrows with their children. Our good friends (I wil call them the "W"s) have not only been there for emotional support, but have also watched Reaghan while we have had to take Nixon to his child psychologist. Ms. W has also come over to watch the kids and put them to bed while Bill and I attend a parenting class with parents of other special needs childern. The W's are fantastic people who I feel have a firm grasp on what is truelly important in and friends (to them the two are the same). They are good friends of ours and I am completely humbled by the amount of support we have them we will be eternally gratefull.

In the end, we are the same. This has become very important to me. Nothing has really changed, as much as our perception of our reality has changed. We will continue to be the same family, the only change being that our new understanding of his behavior allows us to be better parents. We will do everyting possible. We will be advocates. We will also not become "the parents of that autistic kid". Like E from the Eels said "You just gotta let it go". Life goes on, and so will we.


Viscouse said...

Hi Cybill,
I'm sorry that it's taken me this long to see your newest post! I can only imagine how devastating this news may seem, and yet I'm so happy to see how you're trying to integrate the information into your life and into your family without necessarily changing your perceptions and expectations of your son. "trying" - it's VERY hard!

If I can be of any support, in any way, please email me or call me!!! I have worked in the schools as a social worker, doing evaluations (of older children)... and I've worked in my private practice with children and their families helping everyone to cope with the knowledge and the social situations that arise. I know that you have to wait for PC schools, but by law they have to do an eval within 30 school days of a request. It sounds like you are already hooked up with many resources, I don't know if I have any more at my disposal.

For some reason, I'm also remembering posts on PCMOM, I'm wondering if there was another mom who has gone through similar circumstances.

That said, you and your son and your family are unique. It may be helpful to compare notes and look for more support... or it may be more painful and difficult.

Again, if I (or we) can be of any support - even if you'd like another sitter, I'm sure our girls would love playing w/ your kids if you need to step out for any reason at all!

I'm also glad to hear that you're understanding the spectrum, and where Nixon may or may not fall. It was funny, after I ready your post, I scrolled down... you have pictures of him w/ finger paints, and of playing in the water puddle. Sensory issue? He may have some, but they can't be that severe!

Best wishes to you all,

Anonymous said...

I'm sorry you are going through this. You are so right. No matter what label he is given he is still your "Bubbie".