David is a very intelligent little boy. He is full of love, and very cuddly. And he is autistic.
David was born on an average day, in an average way. His apgar scores were 8/9, losing points on coloring. He was 8 lb, 9 oz and 21 1/2 inches. He was a natural at nursing. But he was fussy. Always fussy. He didn’t nap. He would nurse and then sleep 10 minutes. Then he would fuss. A while later I would nurse him again, only to have him sleep 10 minutes. And then fuss.
At his 4 month check-up, he refused to follow the doctor’s light. He would not track. And yet I’d seen him do it before. That’s what I had told the doctor. But then… Well, after that I noticed that he didn’t alert to all noises. Could he be deaf?
I did little tests around the house. I tried ringing bells. Whispering. Lots of noises and pitches. I took note of what he alerted to and what he “ignored”. It seemed to me that he was not deaf. My next thought was Autism.
And just as quickly I pushed it from my mind.
When David was six months old, his favorite toys had spinning parts. He loved to lean out of the stroller and watch the wheels move. My sister warned that Autistic kids are fascinated with spinning parts of things. She said we needed to be doubly observant of his development.
As time passed, we fell into a routine. We pushed our concerns aside.
Then two months after his second birthday, we had our eyes opened. My sister’s wedding was in a resort in south-west Florida. David was on super-overload. He was uncontrollably hyper. He couldn’t socialize with the other kids. And he tried. It was heart breaking to watch. He tried to trade a half-eaten strawberry for a toy. He was ignored, pushed around, mocked, and blamed for everything that went wrong. I did what I could. And when I could do no more, I tried to avoid the situations. I was exhausted. I was the only parent with three kids who followed her son around 100% of the time. Daniel was an infant and nearly equally as needy as David.
But when we returned from Florida, I started the process to get evaluations. First I went to the Pediatrician. He accused me of not being able to handle my hyper 2-year old and wanting to medicate him. I was mad. But I ignored his opinion and pushed for the referral. I refused to leave until he gave it.
From there we waited for Tresco Tots: New Mexico’s version of Early Childhood Intervention. They did all their preliminary things and then finally evaluated David. They approved him for speech therapy, occupational therapy, play therapy, and family therapy. They also submitted a referral for the University of New Mexico’s ECEP (Early Childhood Evaluation Program) Team. They traveled to Las Cruces from Albuquerque and spent three hours evaluating David and his medical history. According to their combined professional opinions, David was not autistic. He had Sensory Integration Dysfunction.
Six months later we had moved to Plainview, Texas. Texas has a policy of moving kids into the public school the day after their third birthday. That is where he was to receive his therapy services from that point on. I was not keen on David going to school. Especially the day after his third birthday. The ECEP team in NM advised that David not go to school or daycare. They said that he was progressing the best at home. That he would not do as well in a classroom setting. But, I allowed everyone to talk me into allowing him to go. They raved about the teacher. The setup. The therapists.
So he went.
They evaluated him. They decided that he was Autistic. Actually, Severely Autistic. The evaluation took place in a small room. There were five adults allowed inside. And I was not one of them. The evaluation began an hour after it was supposed to. And, half-way through, they began evaluating a blind girl in the same room. That meant three more adults and vibrating, flashing toys. So, added to David’s testing was the fact that he couldn’t attend and the fact that he wanted the flashing toys, but did not socialize with the 1 1/2 year old blind girl. The entire thing was so bogus. How on earth can you claim this evaluation to be accurate? And yet the teacher stood by it till the end.
He was placed in a classroom with four highly Autistic boys. And was told they were his “friends.” And yet in the two weeks he was there, he regressed in so many ways. He regressed socially. He lost his self-feeding skills. The self-feeding skills that took such a long time to teach. In summary, after two weeks in this wonderful classroom setting, David acted like an Autistic child.
I couldn’t stand it anymore. I pulled him. Within 10 days of having him home, David began making up for some of the things he had lost in school.
I called around and found a home therapy business that David qualified for. He was all set to receive Occupational therapy and Speech therapy in our home once a week each. At the end of two months, the OT hadn’t done anything. I had even given her ideas and led her along. So, I fired her. Our speech therapist, however, was wonderful. We continued therapy with her until David no longer qualified. Right around the age of 4.
Since then I’ve done his OT and speech myself. I am completely self-educated. I have done nothing but search the web, and read books to help myself and my children. Now David is approaching his sixth birthday. I have a few months yet, but it’s looming. I have had to give in and medicate him. He takes Risperdal for his aggression, and Strattera for his attention.
This blog is meant to be a journal of our journey. Something to help others in a similar situation. Stories of our past and present. But also, hopes for his future.
