We've Forgotten What's Normal

I have three of those T-shirts that Linda had the kids make for father’s days past; you know, the ones with the hand prints of your kids that say "Best Dad, Hands Down"? I have one from mid 1999 with one set of handprints; one later with 3 sets of prints: then one with 5 sets. Linda and I were married in '88 and we had 5 years of childless bliss; then we had Aly and had 5 years of a single child (childfull bliss, not quite, but still fun). Then, in the course of 5 years we had 4 more.

In the first 10 years, we had given ourselves plenty of time to adjust to new phases of life; these last 5 years, life has barely given us time to breathe. Someday I detail it out, but today, I want to focus on trying to find out which way is up, and to see if anyone else is suffering from this 'normalcy vertigo'.

These last three years, we have been transformed from a large, 'normal' family, to one dealing full time with special needs children. We've learned more than we've ever expected (or wanted) to know about ANY disorder. We have readjusted our outlook on the future. We have re-geographied ourselves. We have had to reassess what we considered 'normal'.

The 'What to Expect...' toddler/ preschooler books are now in the landfill (maybe I’ll write “What to Expect, the Autism Years”). Potty training, formerly fretted over at 2 or 2 1/2 , is now almost a far-fetched fantasy. Imaginary play that was, in the past, a source of amusement and endless game playing is now a mere memory and something relegated for the 'older' 3. Some many things taken granted for the first 3 times are now things we must scratch and claw for.

Despite, or maybe because of, the mayhem, I have found myself hyper aware of every advancement they make, perhaps 10 times more than I relished accomplishments of our first. Talking, reacting, imitating, defending their ‘turf’- once milestones that were whipped by at 70 mph are now watched with dumbfounded deliberate exuberance, like teenage boys passing a hitch hiking girl in a short skirt. I somewhat feel like a cured cancer patient who gets a new view of life; he may have half a lung, but he has a whole new perspective on the world.

I feel torn, because I feel bad for the older three. They had several years of normalcy before being thrown around in this storm. But they are young, strong and resilient. They do take it hard sometimes, but from the autism perspective, they take it in stride and are regulars at the monthly sibling support group at Livie’s school. They miss out on so much though; so many lost opportunities because we are tied both financially and physically to caring and development of Grace and Liv.

It’s like having two families; maybe something like merging two divorced families together. “We did things like this in the past but now things have to be done this way because of the ‘other’ family”. Except, like a dog with 3 legs, we know nothing else; we hobble along as if it was never an issue. We/they take it for granted that outings must be planned for far in advance; that disappointment over missing things because of time constraints is sometimes the norm.

I could go on and on with the details. Maybe I can do a “Child of the Month” and detail out their unique ways of dealing with this autistic life. But anyway, as you probably have already said to yourself “What is ‘normal’ anyway”? With extended families, weird relatives, divorce, gay marriage and adoption, single parent households, grandparents/relatives raising children, there IS no such thing. We had felt we were out of the ordinary because Linda and I have maintained our marriage for almost 20 years; now we’re not normal for another reason: 2 autistic kids. I guess I wouldn’t want it any other way…