Moaning Noises

It was a fairly decent day and I went to pick up Dane from school.  He was happy and ready to go home.  One of the teachers was standing off in the distance with a radio controlled miniature school bus.  He was talking into a headset microphone and the words would come through the bus and talk to the kids.  The bus also sprayed water at the children.  They loved it.  The bus reminded me of Thomas the Tank Engine.

Things are getting slow around work because of high gas prices and the economy.  Every 3rd Thursday I am expected to go to Danes intensive therapy to observe and talk with the counselors.  I am approved for Family Medical Leave for those days.  I am not sure if many employers approve FML for autism services.  These days are unpaid.  Work also has been having plant shutdown for lack of work for the past several Fridays.

The main topic today at therapy was Danes noises and moaning he makes.  He curls his tongue and makes weird loud noises constantly.  We have to pay close attention to one of the noises in which he is unresponsive and is staring off.  That is a sign of a seizure and we need to document that with video footage.  She wants to know what he looks like before, during and after the episode. The counselor is concerned that she is referring us to a Neurologist for an brain scan to see what triggers the seizure.

Other noises he makes I think are normal.  When he drives his little cars around, he makes motor boat noises with his tongue.  Another noise he makes is when he is active.  He curls his tongue and makes loud Luuu noise.  Those can be redirected. We tell him to stop and he answers and then continues to do it.  On the other hand, his moaning and lip biting and staring off and doesn't answer when spoken to is the one we need to really watch.  That is the concerning noise we need to document.  I haven't been documenting anything video wise with his unusual behaviors.  I really think that it is time to start a separate taping of these instances that we are trying to figure him out with and learn more about his stims.

water, left out & noises

It really heated up this week.  Yesterday and today reached a high of 96 degrees.  For the rest of the week we're back into the mid 60's.  It will probably storm with this cold front moving in.  It was so hot in the house I had to set up a sleeping area in our basement so we could all sleep.  I'd run our air conditioner but our electric bill goes way up.  I switched over to box fans for our windows but from what happened last summer the bill was no different then if I ran the air conditioner.  Why waste the energy if the house doesn't cool down?  Just go downstairs I figure.

Dane loves water unless it involves getting his hair washed.  My sister-in-law bought a water sprinkler system from the dollar store.  She thought that the older kids would have played with it but Dane was the only one.  Allyson, my daughter, stayed in the clear because the water was cold.  Once Dane ran through it once, he had fun with his cousins spraying him with their super soakers.  I originally bought the water guns thinking Dane would play with them but he can't squeeze the trigger.  I'd like to go back and maybe find him a battery operated water sprayer so he can play and get back at his cousins.

Grandma had 5 tickets to see the same circus we just seen last week.  I do not wish to see it again but my nephews didn't see it.  Grandma took my 2 nephews and had 2 tickets left for kids 12 and under free admission.  Dane overheard that they were going to the circus.  I told him that he already seen the circus and now it is Damian and Tylers turn.  He went to our truck and threw the booster seats in the back and then buckled himself in.  There he stayed spinning the wheels on his little car.  I came to check on him from time to time and ask if he was going to come out and play.  He said "No" and that he's going to the circus.  As long as he wasn't getting out of control I thought I'd let him sit in the car until he was ready to come out.

A while later Grandma and the boys left and Dane came out.  He took it pretty well seeing that Grandpa stayed back.  He got out his power wheels jeep and rode around the yard with his sister on her 4 wheeler power wheels.  I got out the go cart and we chased each other around the yard.  Dane wanted a ride because I gave Ally one.  He would have had a complete meltdown if I wouldn't have but it was no trouble.

Dane has his therapy tomorrow and I have FML off of work.  I get to talk with one of the counselors with my wife to discuss how things are going and if we need to work on anything new.  The noises he is making sticking out his tongue and unresponsive when we talk to him is to be of concern.  The counselor wants us to try and capture on video what he looks like during the process.  It may be seizure activity and may lead up to an EEG scan on his brain.

Seizures

When my son was little, we used to notice him clench and shake like he suddenly got the chills. It would only last a few seconds and we weren't sure what to think of it. As he got older it is not as noticeable but it still happens at times.

His teacher noticed this. During class he gets little tremors and goes into a daze. The teacher will wave her hand in front of his face to try to get his attention back. What is this about?

When we got the diagnosis of autism last year we had mentioned this symptom that we were witnessing. The doctor and Occupational Therapist didn't mention anything about it. We were referred to have intensive therapy to treat autism in my son. It was up to us to look into centers to find one that would be best for him. Luckily we live in a center part of the state where we live within a 40 minute drive one way.

A few weeks ago was my sons first day of intensive therapy for autism services. They took him into a separate room and did play therapy with him for about an hour. After the session the therapist told us what she had witnessed. "He's having seizures."

We brought up what we seen when he was little and what the teacher had told us what happens in class. Some time during his therapy they will include a neurologist and will hook him up to an electroencephalogram (EEG) and find out what triggers these seizures. 1 in 4 children on the spectrum disorder have seizures.

Day 1 of Intensive Therapy

My sons first day of therapy went very well. The therapist came in and asked my son if he wanted to play. He took her by the hand and went into a room where we watched from the other side through a 2 way mirror. This was mostly "play therapy" on his first day. The therapists do not want any disturbances from the parents or other siblings. This is intensive one one one focus working with my son.

We got some interesting observations and learned something about them. When my son is moaning he is crying for sensory stimulation. He also has little seizures which I have noticed when he was still a baby starting to sit up on his own. Soon he will have to have an electroencephalogram (EEG) scan done on his brain. They want to trigger a seizure to find out what causes them. I think they do this by flashing lights at him while monitoring his brain waves. I'm not sure though what they will do. I pray it's not epilepsy. 1 in 4 autistic children have seizures from what I have read.

The therapists ordered us a weighted vest to help with his sensory issues. We tried a weighted blanket in the past when he was being observed through the Birth to Three program. At the time we didn't know how to use it. The same with that little brush they gave us to brush him when he was having sensory-overload. We were supposed to brush his arms to stimulate his nervous system every couple hours. I don't know what ever happened to that brush. I know we gave the blanket back and shrugged our shoulders because we were new parents. A baby doesn't come with directions and what were we supposed to know about autism at the time?

As parents of a child with special needs you learn as you go. I am trying to document what therapy does for my son as to help my readers new to autism learn more about what they may expect. Parenting autism is hard work. Keep faith and hope that the future is bright filled with happiness.