Anger, Frustration & Worries

I logged in today and read my last post from last week. Talking about S's great group therapy session, etc. Oh what a wonderful day that was.

The following day, he had a one-on-one session which didn't turn out quite so great.

Here is his story:

Drop off went well. S's therapist was running late and I had to be at work, so one of the other therapists agreed to integrate him into her session until his therapist was able to get there. That was fine with him. He got to make a new friend.

During snack-time however, things took a turn for the worse.

Because there were two little boys there that day, the therapists thought it would be nice to have snack-time together.

The other little boy thought it would be funny to take S's cookie bag and play a game with him.

He would take the bag, give it back; take the bag again, give it back. On the third time that he took the bag, he kept it a bit longer than the first two times, causing S to cross his arms and "huff" in anger.

The therapist then asked S to "ask the little boy for your bag back."

No response.

When she realized he was not going to do this, she did not give him the bag back. She made him clap to get the bag back.

Before he would actually "clap" however, he had a melt-down and started to cry.

(He's probably thinking... screw you lady, just give me the GD cookies back! And, why don't you tell that little bugger to give me my GD cookies back!!)

While he was crying, the therapist (who BTW is a University summer student whose mother happens to be the Director of the Program) said that he would not speak for approximately 20 mins and when he did start to speak again, he would not speak in sentences and his words were not phonetically correct.

Okay... I understand this... this is our whole issue. When S gets upset, he shuts down. That's what you guys are getting paid the big bucks for... you need to help us figure this out and teach him how to cope in these situations.

The day after the therapy session, I got a phone call from one of the ladies involved with the program stating that, "we are afraid to do therapy with S, because we think that there may be something 'medically' wrong with him. This is not typical behaviour that we have seen before and therefore would feel more comfortable once the neurological paediatrician has done some more tests."

So, I'm completely bewildered. I thought this was the whole point of therapy. We told them what was going on before he even started. The paediatric an recommended this program... now, they want to stop all therapy? WTF??

I hang up the phone and immediately call the paediatrician's office and explain to her assistant, what is happening. She is completely confused and cannot understand what's going on the same as I.

Saturday evening, the paediatrican calls me at home to hear my story. She states that even if stressful situations were causing him to have seizures (which is what the program director is thinking), there would be no reason to just stop therapy. Plus, the two EEG's that she has ordered over the past few months have both come back normal with no signs of seizures.

Tuesday, I get a phone call from the Director of the Program. She states that she has sent an email to the Paediatrican after trying to phone her the previous day with no luck in reaching her.

I express my anger, frustration and worries. I got a little "hot" under the collar when speaking to her on the phone because I thought this was their "job" to help figure this little boy out.

She then proceeds to tell me that, during the session when S had his melt-down, the therapist witnessed weird eye movements and facial twitching. WTF???

Why in hell didn't they mention this on Friday? I wish I had been armed with this information when speaking to the Paediatrician!!

That makes more sense to me.

While I was speaking to the Director, she received a reply to her email from the Paediatrician stating that she had put in a requisition for a video overnight EEG to be completed at the end of August and has also put him on the list for an MRI... which could take months. The earliest will be September and that is with everyone on this great earth crossing their fingers and praying to whatever god / universal power that they possibly can.

So my question of the day?

What do we do now?

The doctor tells me to watch him carefully for weird eye movements and facial twitching and to call her if I witness ANYTHING. Honestly... I've never seen this in the past four years of this child's life!! Other than when we were at the last EEG appointment when his face kind of drooped to one side when he was screaming his head off!

The doctor seems to think though that if he was having seizures, he would be having them more often than when he was having a melt-down. And if it was affecting his speech, he would most likely sound like a deaf person when he speaks... but this is not how he speaks. He speaks very slow, clear and phonetic.

The worst thing I have ever heard in my life thus far is, "Momof3, your son is very unique and a mystery to us... we just don't know what is going on with him."

WTF??

This does not make me sleep well at night!

God / Universe... give me strength.