Hello. I am the mother of one wonderful and unique son who was recently diagnosed with Autism. Let me begin this post with some background information. First of all, my son will be referred to on this website as Monkey. When my son was born, my husband and I bought a onsie from Wal-Mart that said, “A Little Monkey Business.” It was so cute that we eventually bought another one, but my son has since grown out of the onsies, but not the nickname “Cute and cuddly little monkey business.” Therefore, I will refer to him as Monkey. Now, Monkey was born in August of 2007. He was a pretty healthy baby. He weighed 7lbs. 4oz. and was 20 3/4 inches long, but had a “touch of jaundice” as his doctor put it. I suppose I was the unhealthy one, though because Monkey was a c-section baby. I was told after many hours of labor and several adjustments in dosage of Pitocin that Monkey’s heart rate was dropping every time I had a good contraction and every time the doctors lowered my dosage of Pitocin I would stop having good contractions. A c-section was the only option in my case. I just wanted a healthy happy baby, so I let the doctor do his work.
After my son came home, he acted pretty much like a normal baby. Then when he was five weeks old, his hands could touch the sides of his bassinet and this bothered him. My husband and I discovered that our son just needed more room, so we put him in his own crib and slept in his room with him until we were able to buy a baby monitor. My son babbled and cooed like most babies and his cousin who is almost the same age (only older by about 2 1/2 months). But at one year, my son wasn’t yet walking and couldn’t say any words. His cousin said a few words and could walk. We took my son to his pediatrician in search for an answer as to why our son wasn’t walking. We thought talking would eventually come. Our pediatrician asked us about the flat spot on our son’s head. We knew he had this spot and worried a little bit about it, but the spot didn’t seem to affect our son. Our pediatrician sent us to a specialist to evaluate him on his ability to walk and sent us to have an X-ray done on our sons head to make sure that the flat spot wasn’t putting any pressure on his brain. His daddy also has a flat spot on his head in the same place and the X-ray was normal. There was no pressure on the brain. Good. When Monkey went to be evaluated by the specialist about his ability to walk, we were told that he was showing signs of walking. He has a big head and small feet, but he will eventually walk and he did. My husband and I were so happy that he took his first steps and eventually walked by himself, but there was still a problem.
My son still wasn’t talking. He was only babbling. It wasn’t long though, that my son started using the word, “no” and I thought, surely more words would come. We lived in a small town and seeing a specialist meant driving an hour and half, but I was willing to drive. At age two, Monkey still wasn’t talking that much. There were no two word phrases and many words were parroted or eventually lost. By that time, his pediatrician suggested we see a developmental specialist, but that we see this specialist through something called Tele-care, which is basically, seeing and being evaluated by a doctor through a television, like a video call. I was working and couldn’t make the appointment, so my husband took my son that day. At the time, my husband and I were considering moving to the bigger city that was an hour and half away, so the specialist said that everything seemed to okay, but it was difficult to tell. Come back and see him in six months, which would be after we moved. The biggest problem, was that we didn’t move when we thought we were going to. We had to wait. So it took longer to get my son to see the specialist in person. By the time my husband and I found out about First Steps (an intervention program in Kentucky) it was already too late for my son. The cutoff age for the program is three years and we didn’t hear of it until about a month and half before my son’s third birthday.
Once my husband and I moved, things began to look up. We had to transfer our son’s medical card, find a new pediatrician and then make our initial appointment with that pediatrician before we could even be put on the waiting list to see a specialist. This process took from January until April. Once we saw the pediatrician though, we were put on more than one waiting list. We were put on waiting lists for an evaluation by the developmental specialist, speech and occupational therapy. Speech therapy was the quickest. My son’s speech delay was the most obvious sign of his Autism. The rest would have to wait.
Now, my son goes to speech and occupational therapy on a regular basis, that is for one hour each, once a week and is making progress. I’ve enrolled him in preschool for the Fall and now that I have the official diagnosis letter, I am prepared to go to the Board of Education this week (probably tomorrow). Monkey is making good progress. There are still no two word phrases, but he says some words more often and more spontaneously, without parroting. Potty training is still a battle, though. Monkey will only go potty as part of his morning routine and will hold it in if he’s put on the potty any other time than when he first wakes up. I plan to make a potty chart and put him on the potty at the same exact times everyday and see if this will work. This is his progress at the moment and I am glad for that.
So, here’s some advice for my first post: If your child isn’t developing normally, push the issue. If a doctor says that your child needs to see a specialist, do not use Tele-care, because it’s not very useful for an initial evaluation of a child with Autism or Autism Spectrum. It’s probably not useful for many other developmental disorders either. If you live in Kentucky and your child is under age three and not close to their third birthday mention First Steps. There may be other programs like this if you live in a different state as well. If I had known that First Steps existed before my son was almost three, he might have gotten more help and that time is something he can never get back. And lastly, if a friend, family member, or complete stranger suggests your child might be Autistic because s/he is flapping their hands, don’t be offended or tense. Just talk to your pediatrician about a diagnosis. It might make a world of difference for your child and your child may be benefited by a much earlier diagnosis. Remember that when it comes to ASD, a diagnosis is essential.