January 22 2012

I don't exactly know where to start. I have 4 children. A 17 year old daughter, a 9 year old son and 2 year old twin boys. I believe the twins have autism and have testing and evaluation scheduled. I will start at the beginning. The twins were born 4 weeks early at 36 weeks. Or 2 weeks early if you believe 38 weeks is full term for twins. They weighed 5 lbs 13 oz and 6 lbs 14 oz. Pretty big for preemie twins. I had gestational diabetes and possible pre eclampsia. I was retaining a lot of fluid in my feet and legs, and not urinating as much as I was drinking. So an emergency c-section was performed. We were in the hospital for three days, mostly because of me. I was on strict bedrest with my feet in some sort of massaging machine. Patrick, the biggest and oldest twin (1 minute older) needed a little oxygen as he had low oxygen saturation, and a little bit of formula as he had low blood sugar. Jacob was a little jaundiced. They had their hearing tested and their little ears were fine.
We all came home together. They developed normally. They were a little slow to roll over and sit up, but I gave them extra time to hit milestones because they were premature. They walked at 14 1/2 months.
They said a few words. They once had a whole conversation using only the word "cookie". They said "mama", "dada", "bub", and "ninny" for their older sister Kennedy. I have video of one of them saying "tanks" for "thanks" when they were about 16 months old. They like to put on their dad's ball cap and say "dad's hat."

We took them to the doctor for regular check-up and vaccinations. When they were 18 months old, we took them for a check-up and they received multiple vaccinations and a flu shot. They slept most of the day and night after that, developed temperatures and breathing problems. Jacob ended up in the ER when his chest started caving in with every breath. He was transferred to a children's hospital and stayed for 2 days. He needed an IV for dehydration, oxygen for low saturation, and breathing treatments. Patrick was admitted to the hospital the day that Jacob was released and remained for 1 day. He had ear infections in both ears and was also dehydrated. He received oxygen in the ER plus a breathing treatment but did not need it during the day he stayed. During their stays, it was very difficult to keep all the wires straight on their little bodies. I was so worried they would strangle themselves that I did not sleep unless they were lying on my chest. I was so exhausted that I did not even know what day it was when we finally went home.

After that, they lost the speech that they had. I don't know for sure if the vaccinations were the cause but that is the point were I noticed the loss of speech. In the months that followed, I noticed other children their age having conversations with their parents. Children younger than them saying "I love you" while my two either remained silent or jabbered nonsensical words. At their 2 year check-up, their doctor recommended speech therapy and cognitive development therapy. They will be 3 in about 6 weeks and Jacob has not gained any speech, while Patrick will echo some words. At their last evaluation Jake had the speech of a 12 month old and Patrick had the speech of an 18 month old.

They never slept through the night. Most new parents celebrate the 4 month mark when the baby no longer needs that 2am feeding. But 4 months came and went and these two still never sleep more than 3 or 4 hours at a time. And sometimes they sleep in shifts. One is wide awake while the other is snoring. And like a nob is turned or a switch is flipped, the sleeping one will wake up as the other nods off.

They had some repetitive behaviors like crawling back and forth across a short distance. Now the crawling has graduated to running back and forth. From the door to the opposite wall, back to the door, touch the door knob, and run back to the wall. Over and over and over. Jacob loves light switches and flips them off and on anytime he can reach them. They both like to change channels on the tv or to turn their brother's XBox off and on. And they both love to slam the kitchen cabinets. Bam bam bam bam bam. You would think it would get old after a while but so far it hasn't.

They like to watch things spin. They never really played with the whole toy car, just the wheels. They do stack blocks, work puzzles and sort shapes. Patrick liked to carry around 2 toys that were exactly the same, 2 red blocks or 2 Sesame Street cars. He also likes to put the same size blocks or the same color blocks on the dresser top. Jake likes to knock down the block towers.

They cover their ears whenever a sound bothers them. It doesn't necessarily have to be a loud sound. Sometimes just the pitch will make them cover their ears. They can sleep through the loudest of noises. They both  kept snoring one early morning when I stepped on a fish hook and screamed my head off. Often they will wake up when we turn the tv or radio off.

They don't turn their heads when you call their names. They don't point to anything and never look at what is being pointed out to them. They cannot follow simple directions like "Bring me your cup." They will bring us a cup and place it in our hands when they are thirsty but not when prompted. They will also bring us a plate or bowl when they want a snack.

They are going in for their 3 year check up on Tuesday. I have told their doctor that I believe they may have autism. She will be doing the usual screening process. I told their speech therapist about my concerns and she brought in a friend of hers, who is an autism specialist, to see them. You can't make a diagnoses in one short visit but she believes they have a lot of the characteristics. They will be tested for pre-school on Feb 7th and an autism specialist will be there as well. If they are 25% delayed in 2 areas, they will qualify for special education services and be able to begin preschool on their third birthday. The preschool they will attend has a full time autism specialist and they will receive whatever treatment and therapy they need.

I have been doing a lot of googling about autism but don't really know a whole lot about it. I am going to try to keep a log of everything. I want to do more to help them. I have read a lot of articles and watched a lot of videos and I am both optimistic and overwhelmed. My reading has led me to believe that I have Aspergers syndrome but I will leave that theory for another post. My mom had a little brother whom we believe was autistic back in the 1950's. He died when he was five years old. I will leave that story for another post as well.