Friday, January 26, 2007

A Slant of Sun

Greetings and salutations all, welcome to my new endeavor: a blog. I think this will be the longest entry, as it is the introductory one. (Just to relieve you!) This title (A Slant of Sun) is the same as one of my favorite books on autism. My son, who just turned three, has been diagnosed with this bewildering condition. Part of the reason I'm typing this blog is for anyone else out there who is floundering after hearing news of a similar diagnosis of a loved one, to share my thoughts and viewpoints so you don't feel as lost out there. I did, the first few months after he was diagnosed. Another part of why I'm typing this blog is so that, in case we find something that works really well for us, we can share it with others and hopefully help someone else. There are so many variables and levels on the autistic spectrum, and no two kids are alike, which makes this very hard to treat. If there's something that works for us, we're going to share it.

My son was born early, about 2 and a half weeks. The sphincter linking his esophagus and stomach hadn't formed completely yet (so we were told) and my son had horrible reflux ~ as in, would launch the entire contents of his stomach (right down to his toes) across the room. After enduring 4 months of this, he finally stopped ~ but not after we had started propping him up in his car seat to sleep and measuring for distance if it was a particularly good hurl. (18 feet is the record). The latter may seem callous and disgusting, but it was a survival tactic. We had to find something funny or we were going to go crazy. He was not allergic to anything, we had that checked out first thing, so we just had to wait it out.

Oh, yes, and the screaming. If my son was awake, he was screaming ~ he screamed if you picked him up, and screamed even harder when you put him down. 24 hours a day. For 6 months. My husband, who was in the Army at the time, would leave the house at 5:00 a.m., drive 45 min to work, and return home around 8 p.m. four or five days a week, and we only had one car. I was literally going a little crazy, was depressed, and suicidal. There was no escape, no break from it; we moved 1000 miles away from the closest family one and a half months after my A-- was born, courtesy of Uncle Sam, and none of my neighbors were interested in getting to know a baby that screamed all the time. Nor could we get a babysitter. Because my husband's work schedule was not regular, he worked a lot of Sundays. We didn't find a good church home until A-- was 7 months old, and past the screaming hurdle. And I couldn't get out and try to walk with him, because we moved to Maryland in January and that was the year they had tons of snow and cold weather until about the end of April/beginning of May. We now know that his incessant screaming was because he was being sensorily bombarded and couldn't handle what the rest of us thrive in on a daily basis. Clothes, getting a bath, being held, anything triggered his supersensitive nerves.

And sounds. My son still freaks out if he hears a vacuum cleaner, hair dryer, lawn mower, weed eater ~ pretty much anything loud and/or high pitched will do it. I guess that explains why vacuuming under his crib didn't help calm him down, as was suggested in a colic resource....

Once we got over the screaming hump, things got better. We met some friends. I got a part-time job. My husband and I thought he was progressing pretty normally until he reached his second birthday. He said "please" and "thank you", asked for "apple juice". He knew all of his letters in and out of sequence, could pick them out of words, and he could also count to 20 and backwards from 5. He also knew his colors, shapes. I noticed that he did a weird thing with his hands, touching his index fingers while his hands were rigid ~ and it freaked my neighbor out. He would also shake his head back and forth or spin in circles for hours. My neighbor's daughter was almost exactly one month older than my son, so they "played" while she and I talked. Extremely bright, that little girl was lightyears ahead of my kiddo in every regard. I know you aren't supposed to compare your kids with others, so it didn't bother me too much....but then I noticed what most other kids his age could do that he just couldn't. And this was at the park, at church, all sorts of places. The older he got, the more apparent it became to me that something might be a little off. He really didn't play with other kids, they were more like....walls, or decoration. He knew they were there, and would work around them, but he never engaged with them, or me either for that matter. From the age of six months until about 18 months, A-- loved for me to read to him. Then one day he just quit liking it, and still doesn't enjoy it. He quit speaking all together, and starting doing animal grunts. He still said his letters and numbers, often counting while spinning around in circles, but all other words ceased. A-- would also space out regularly, and nothing would bring him back, not even touching his arm. These little episodes were infrequent at this point, and only a few seconds at a time.

His pediatrician wasn't worried, since our son had met most of his milestones ~ but adopted a "wait and see" policy. There was something niggling at me, but my husband said he was just fine. Kids develop at their own rates, and our neighbor's daughter is a genius child; no sense in comparing the two. Also, my son's cousin didn't begin speaking until after she was 3 years old (and now she's 5 and won't shut up!).

In the six months after my son turned two, we: 1) moved to the town my husband works in, because the company I worked for closed nationwide 2) I gave birth to A's sister 3) we were involved in a serious car accident six weeks after K-- was born (both kids were fine, not a scratch on them). So there was a lot going on that could have delayed some we still were "waiting and seeing". His grunting and screaming were becoming more pronounced, and his "spacing" episodes were happening multiple times a day.

My parents came to visit at the beginning of June in 2006. During their stay, they noted A's behaviors and expressed some concerns. My husband and I had a long talk, and we finally agreed to take A-- in for an appointment at the military clinic here in our new town. This was at the very end of June. We were sent to Bethesda (2 hours away) and after a battery of tests at the Bethesda Naval Medical Center, both blood and observation, A-- was diagnosed with full spectrum infantile autism syndrome on July 17th, 2006.

We reeled mentally and physically for a while, even though both my husband and I were starting to suspect just that diagnosis, through personal research on the internet. Thinking it might be a possibility, and hearing the words confirming it are two different animals. I cried. I was overwhelmed, and didn't know where to begin. The team who diagnosed him handed us some papers, smiled in sympathy, and herded us out the door for their next case. We haven't seen them again, their only job is to diagnose, not to treat. We were lost, floundering for anything that might be beneficial to our son. I felt guilty for a while, like I hadn't done something right or taken him in sooner so he could be treated sooner....and after all that was exhausted (and it took a while), in its place is grim resolution to do the best we can for him and bring him back into our world. And keep him here. I know that there was nothing I did to cause this and nothing I could have done to prevent his autism, either. It just is. And my son was the same after his diagnosis as he was before it. He's still my A--. The diagnosis is just a rudder, to aim us in the right direction to help him learn how to be functional in our world.

Further testing indicated that he might be having small seizures (hence the spacing out). Between our initial neurology consult at the beginning of August, and A's sedated EEG six weeks later ~ his episodes pretty much just stopped. Our church family, and our related families have all been praying for him, we know, and this is the only answer we have. The doctor was stunned and has absolutely no explanation scientifically as to why the seizures could have ceased that dramatically in that amount of time. He had fully intended to counsel us on epileptic drugs to put our son on. He said there was no reason to put A-- on anything, provided he continued to do so well. A-- is still not on any drugs.

Our son was also given a prescription for ABA (Applied Behavioral Analysis) therapy for 2 hours daily, for 52 weeks. This is a wonderful thing, if you can find it and afford it. Many insurance companies will not cover this treatment, or will cover a fraction of it. The cheapest we could find was for $100 an hour; at two hours a day, for 52 weeks.... that adds up quickly. We were still going to be liable for over half the costs. Also, there aren't too many people certified to conduct this type of therapy. In our area, in Maryland, we have one of the better concentrations of ABA certified therapists....and the shortest waiting list is 10 families deep, and hasn't moved since last May. Basically, the list only changes if someone moves, or dies. We were given the option of going to Washington, D.C. every day for 2 hours a day at the Walter Reed medical complex. But, everything is being shifted over to Bethesda Medical Hospital so they can close the much outdated Walter Reed. And that therapy isn't offered at either location. Or, we could have driven down to Richmond, VA every day, which is 6 hours away from us. Not even an option for us financially, just from gas, but I tried to find a way. I did everything I could think of, and then realized that being willing to move heaven and earth was just fine ~ having the ability to do so is something entirely different, and I'd done all I could do at that point.

So we waited.....and waited some more.....we'd put our names on the lists and there wasn't much else to do but wait. We also approached Maryland Infants and Toddlers about starting Head Start. Since our son was turning three in November, they delayed him until after his birthday so he could attend special preschool in the public school system (the Inf and Todd program is only for kids from birth to age three). It was agreed upon that starting him on a program for a month and a half, then switching him up again was probably not the best thing to do. A-- hates any major changes in his routine. An easy way to ellicit a tantrum is to alter his "normal" schedule, including what time he eats breakfast. It's always at 8 a.m. Always. Earlier than that, he won't eat it. If we go past 8, he immediately begins yelling and grunting.

Just before Christmas, our son was enrolled in the public school system here, in a special preschool program that incorporates occupational therapy and speech therapy as part of their curriculum. And it's free (Thank God). A-- had to go through more tests to assess his abilities, and he finally started on January 16, 2007. He has done fairly well, some whining but no tantrums or crying. He watches everything, but hasn't joined in yet. Due to Martin Luther King day, there were only four days of school last week; this week, the kids were out of school Monday and Tuesday for teacher workshop days. Next week will be the first "normal" week for him, and we are anxious to see how he does.

And just today, we received in the mail authorization from our health insurance for A-- to get occupational therapy twice a week for the next year at a local physical therapy clinic! His school does fulfill some of the ABA requirements, but there are still some individual areas that are lacking. Our insurance has decided that they will cover this particular need. A-- starts next Thursday!

1 comment:

Peggy Smith said...

Jennifer, I am so thankful that you are willing to do this. I think this can be a great resource for parents, teachers, anyone who knows and loves an autistic child. With a diagnosis rate of 1 in every 166 children having some form of this issue that is a lot of caring people that need a forum. Blessings, Peggy