Speaking for Those Who Cannot Speak

Or is it speaking for those who cannot articulate; or acting for those who cannot speak; or just plain raising a child? Which direction am I/should I go with regards to the betterment of my young autistic children?

Are we experimenting with biomed (obviously), ABA (possibly), speech, OT, physical therapies (could be)? We have this unprecedented opportunity with early diagnosis to figure out what is the best way for an autistic child to learn. Why shouldn't we try or why (better yet what or when) is it wrong to try? Aren't we trying to see what autistics need early in life, when they could most use a way to communicate, control their issues of concentration, help their functionality within this neurotypical world? I feel we are at square one with autism therapy/training and parents of young uns' are stuck holding the research bag.

It goes to my original shock of the neurodiverse attage of understanding without changing. Even the most fervent of the 'diverse' of the neurodiverse must agree that something should be done for a young autistic child, the issue is always what. What is invasive? I see a lot of talk around the objections to what is deemed as trying to make a child look and act more 'normal'; but for me, it's a blurry line between normalcy and improving a child's condition. My example is my 3 year old, Grace, is having trouble with transition. I think transition is not necessarily an autistic trait but it seems like the work to get Grace to transition easier is made more difficult by her ASD tendencies of wanting sameness and control over her world. Writing that I am again confronted by what is 'normal', what is pushing too hard, what is a tantrum of a three year old vs what is an outcropping of an autistic tendency.

It's back to 'difficult to get it'; how do we take these therapies, these studies, the politics, the day to day existence and desire to make things 'easy' and mold them into a cohesive attack (oops, thorry, used a military term) a cohesive strategy of giving my children what they need vs what is best for me? Kinda between a rock and a hard place, dancing the line between all of what the schools and science says should be done vs what an autistic adult may consider crossing the line into 'normalcy indoctrination'.

The people looking at the neurodiverse movement have to see the symbiosis between the autistic parents (parents of autistics) and the autistic adults. Autistic adults need to look at the opportunity to assist the next generation with advice and guidance; the parents need to look at the opportunity to change the views of the schools and the system to a view of assisting the growth of this generation vs societies attempt to create NTND's.

Why does Hamlet's soliloquy seem to keep popping in my mind with regard to the decisions that I need (want, could) make for my children:

Thus conscience does make cowards of us all,
And thus the native hue of resolution Is sicklied o'er with the pale cast of thought,
And enterprise of great pitch and moment
With this regard their currents turn awry And lose the name of action.

We are in a position to do something (that clock is always ticking in the back of my mind,though I try not to listen). It is a great noise coming from all angles about what to do, all we really want is what's best for them. But is it action or inaction that we should be doing? Is it their balance or ours that we are seeking?

Radar Built into Children

Scenario that prompted blog- Minor neck infraction brought on by standard Sunday night stress. Wife had touched my neck and I requested a neck massage (Very rare occurrence that I ask). Massage begins, one knead...lean in...two kneads...OK starting to find the spot...three kneads..."MOMMM"? Kneading stops...standard frustration ensues. "What"? Linda says..."Nevermind..." the response comes. I begin cackling uncontrollably, even the oldest finds the irony in the situation.

Parents have claimed radarlike abilities on their children; the ability to sense moods; to 'know' when something is wrong with their child. But I think the radar is reciprocal. Children have an uncanny ability to stop a serious conversation; ruin a mood; destroy the climax of a movie; come in just when they are being talked about; or arrive at just the moment a vulgarity leaves our mouths. They either KNOW when their interruption will be most destructive or they are just ALWAYS interrupting. I thing it's the latter, but that is just a way to ensure the former.

There was a great Baby Blues comic strip that illustrated the axiom that Linda and I have 5 minute conversations that last 12 hours. We have become experts at maintaining focus on a subject despite the verbal and physical battles that rage on around us. That is not really true, we can't focus on ANYTHING. "What was I doing?" is the single most asked question to ourselves. “I’ll talk to you later about it” is the top rated interpersonal phrase uttered. Only that, sure enough, as the conversation begins after we feel we are safe, inevitably a child will crawl out of the bedwork and present us with a hopefully sufficient enough conundrum to allow them to either stay up a little later...or win a position on the master bedroom’s floor.

We do have our defense mechanisms. Linda has this 'voice' that she has told me is her 'tuned out' voice. "MMMMmmm..." she says in mock interest as one of my sons drones on about a specific scenario in a video game. I found it amusing until she used it on ME once and didn't realize it until I pointed it out. It's a coping mechanism; it's the same way you have to filter out the 'noise' of all the information that surrounds everyone; you're in danger of missing good insider info though, but hey that's life. "MMMMMmmmm, the cat's stuck in a box of styrofoam peanuts? That's nice honey, go downstairs and play". As for my defenses, I only have a psychotic growl of “LEAVE ME ALONE” when my cup runneth over.

Meanwhile, the massages are that much more sweeter when they can be given. The conversations are more intense when we can have them. Although, whenever we get the time to have them, we always have this ‘twitch’ in anticipation of the incoming ‘whatever’ that we may get at any moment!