The Rain Stopped Tonight

Yesterday, across the East Coast, there were heavy rains. And it did. All day. Odd for some places, but not Syracuse NY where a sunny day in January frequently triggers UFO sightings. (There's a yellow round ball in the sky - whatever could it be???)

As has been his norm for the past several weeks, Zach has a few phrases he has been repeating spontaneously, without specific training. Currently: "duck duck duck" and either "we wish" or "I wish". Yes, wishing has returned to the Morphet household once again.

I often do not know how to refer Zach's language and speech. I sometimes refer to him as non-verbal which is inaccurate as pointed out to me by a researcher in Binghamton since he can utter a few words and does so consistently. I just cannot describe it succinctly.Currently, there is lots of babbling where I believe he is just playing with sound, babbling that has a pattern and he tends to repeat ( I believe these incomprehensible phrases mean something but have no idea what), he has single words that he can use to label items or a few actions plus request a few items, and a few phrases. But most of his vocalization I would say is non-functional at this point. His one therapist believes tht some of the babbling may even be a stim that he does when bored like tapping a finger, bobbing a knee, etc.

When Zach does speak, he is often very quiet and it can be very difficult to get him to increase his volume. He can receptively and expressively identify all letters of the alphabet, both upper and lower case, and has 24 of the associated phonetics down with the associated letter. One of the more obvious idiosyncrasies in his speech I have noticed is his difficulty in saying longer, multisyllabic words where he will frequently drop final consonants and/or middle consonants. His speech is minimally functional and rather inconsistent. We are working on increasing his receptive and expressive language at this time. He is able to do some one-step directives and we are working on two-step with some success at this point. However, on top of Zach's autism, I am wondering if he is apraxic as well.

Autism is largely a social disorder with symptoms of delayed language acquisition, idiosyncratic language, or total lack thereof. The type of idiosyncrasies in Zach's language align to many of the descriptions of verbal apraxia - trouble saying what he wants to say correctly and consistently. I am sorry to say that both of my children have acquired my lisp on top of all the other bad genes I seemed to have passed. *sigh*

Communication delays are by far our greatest concern with him. Other symptoms of his autism include little use of pointing, diminished eye contact, and stimming, namely his desire to jump when not engaged and arm tensing when excited.

I have spoken to a number of families, read books, research online, and am perplexed by Zach and his potential for meaningful language development. I sort of feel like we are in a wait and see stance. Many of the stories I read and families I speak to discuss that once intensive therapy commenced, language development flourished within one year. Well, we are way past that one year mark.

One of the most difficult aspects of autism is you are always waiting, for good things to happen, and for bad things to happen. There are the behaviors that you know your child presents in given situations, and as you are out to dinner or at church or wherever, you are just waiting to happen. A lot of times they don't. Sometimes you think you are in the clear and actually forget about them, and in your lack of attentiveness, whamo! it happens. Then there are the things that errupt out of nowhere, never to have been seen before. The known unknownsnand the unknown unknowns. I listen to what a lot of other parents say when they discuss their children who are older, and I take into consideration that as Zach matures, he may have a lot of these. But then again, it is the snowflake disorder, and every child is so different, you just don't know from day to day. There are genes, there is the disorder, there is personality, there is the environment, there is expression. The cocktail creates an endless array of possibilities that have you waiting like a sniper for the bad, and praying like a monk for the possibilities.

In the end, I think living with autism is somewhat like the rain that we had; living in a rainy climate, you know to have an umbrella, a sump pump, avoid roads that flood, eat soup for dinner. You try not to think of those people who live in San Diego.

I had an evening out with 9 other mothers from our local Families for Effective Autism Treatment group. We met at a Barnes and Noble. The drive out there in the rain seemed treacherous - I could not see the lines in the road, the rain was so heavy and it was dark. I arrived, late, but that was OK. I settled down into a chair. As I looked around the table, I noticed we are all so different!

A mother told me a story of how her 8 year old son who only had said a few single words, recently began medication (Risperdol) and within two weeks, began speaking spontaneously in sentences. My heart fluttered as she told me her story. Another mother spoke of her 16 year old son with Asperger's being asked out on a date. I was as excited as if they were my own children. As the evening progressed, I noticed that we mingled, we discussed, we talked kids, and talked life in general. The conversation never became awkward. We actually closed the place down. There were no kids to chase or watch or fear what would happen. As we exited the store, we went outside and actually talked for another half hour in front of the closed store. I noticed something else, the rain had stopped. All I could think of was how apropos that was. It would certainly rain again, this is, after all, Syracuse NY. But for one brief shining moment, a group of us weathered the storm and were blessed with a break. And it was beautiful.