On again, off again... autism

My son has autism. It is such a painful and hopeful statement to me.

I have a daughter who was diagnosed with Autism, Asperger's Syndrome, and PDD-NOS. If you are familiar with the spectrum, all of these are familiar. And I am guessing that you are familiar with the spectrum, it is the new 'little black dress' of childhood.

My son, my Liam. I am heartbroken that he isn't the neurotypical child that I gave birth to. His birth was the end of a long and difficult pregnancy.

Long because I had a two month pregnancy which ended in a miscarriage in January, then became pregnant again in March. Liam was born in December 2005. The pregnancy was difficult because I had uterine fibriods and then a placental abruption which caused bleeding from month three until month seven. I was on very restricted bedrest (or couchrest) for most of the pregnancy. And for most of the time I was on the couch, I FELT GREAT! Feeling bad and having to sleep or rest is one thing, but having to rest and lie still when you feel energetic and great is an entirely different situation.

Liam was a wanted and planned for baby. We named him before we were even pregnant, hopeful that we would concieve and that it would be a boy. (We didn't put all of our eggs in one basket, though. We had a few beautiful names for girls too.) I had never given birth to a boy. Will, my husband, already had a son and a daughter, but with my two girls, we were definately girl heavy.

So, Liam was born. Healthy and strong. He could and did, on his first day of life, lift his head off of his father's chest and look him in the eye. He was lovely, and I recovered from my pregnancy. We weren't quite successful in the breastfeeding department, but we managed with supplimentation. We were happy.

Life went on, Liam was reaching most of his milestones early or on time. Even with Dagny's DXs, she met all of her milestones early. Liam was developing well, but he couldn't roll from his back to his stomach. He could easily roll from his stomach to back, and he had strong arms and legs. He could sit, and stand. But he still couldn't roll from back to front. We now know that he had trunk weakness. Otherwise, he was happy and joyful. He could talk, laugh, and he was usually in a good mood. We could already tell that he had a good ear, like his father. He got upset when I sang (can't stay on key for anything), and calmed when his sisters or father sang to him. Liam talked sometimes, using words like "Ball" and "mom" "Dad" "Bot". He had the full range of facial expressions.

He responded quite quickly to our emotions. On one occasion right before he got sick, Will, Liam and myself were in the basement and Liam got fussed at for ignoring Dad's directive to stop (hitting, throwing something, or some other such normal behavior for a one year old). He started crying when Will fussed at him, and he said, "I a bad boy". It was a complete sentence, and while I don't remember a lot of other occasions where he was using them, what struck me that day was the emotion, and where had he picked up that bit of "Bad Boy" stuff. It wasn't in my vocabulary, and my mental note from that day was to discuss with the older kids using terms like "bad boy" and "good boy" in front of him. That he had spoken so well wasn't standing out.

Then Liam got sick. My husband got a rash on his head, when he traveled to Las Vegas on buisness in May 2007. It got infected, and when he got home he went to see his doctor. His doctor suspected shingles, and that was confirmed when a week later Liam came down with Chickenpox. He was lethargic and feverish, sick for weeks. His doctor didn't want to see him, she said that with chickenpox, just mind the symptoms. Advil and Tylenol in rotation every four hours for the fever, and calamine lotion for the itching. He recovered, but then came down with a 'stomach flu' which lasted another week. When Liam got sick he was about 35 pounds, by the time he recovered, he was 28 pounds!

He hardly ate any food during his stomach flu, just formula. He loved his bottles, and he rested until he started feeling better.

But, after Liam got better, he was different. He stopped talking, stopped using all of his facial expressions. He saw the doctor in March, and while he was beginnning to recover from his dramatic weight loss, he was different. The doctor, a seasoned resident who had seem Liam before, Dr. Nguyen, was concerned. She called her attending in to look at Liam (his head was large for age, and he still wasn't walking). The attending suggested that we keep an eye on the numbers (head circumfrence and weight) and we meet again in three months. Three months later, in June, Liam still wasn't walking and his head was roughly the same size. His attending was feeling more optimistic about Liam's prognosis. But, new concerns were starting. Liam had a strange gait. Liam had a rash. Liam was terrified of bathing, and of water in general.

We scheduled a physical therapist, who came over once or twice a week and played with Liam until he was too frustrated to go on. She showed us how to keep him from sitting in a W position. She encouraged us to play with him in an upright position at all times. I did what she asked, and by the time Liam was two, he was taking steps, again.

We saw his doctor a few more times during the physical therapy. It was what we were focused on, but we were all becomming more and more concerned about Liam's silence. He stopped talking alltogether with the exception of an occasional "OoooH" or "OK" or phrasing. He had lost all nouns. He had no verbs. He wasn't talking and he was almost two.

We went to Disney in November 2007 for a family vacation. When the people in my husband's family say family vacation, they meant everyone. We all went, even my father-in-law, who was finishing a round of chemo for his lymphoma. We had a great time, and Liam was wonderful. We got a chance to spend time with Mattew, Liam's cousin who is almost exactly one year older than him. Mattie was great. He played with Liam, and they were almost the same size! Matthew has loads of allergies, and his mother is constantly watching everything that goes into his mouth. No dairy, no wheat, all natural.. soy wasn't his issue, which we had discovered by that time caused Liam to have skin and stomach problems.

We scheduled an evaluation for February 2008.