When nothing can mean Everything

New York Times

http://parenting.blogs.nytimes.com/2011/10/05/ratcheting-back-on-autism-therapy/

WHEN NOTHING CAN MEAN EVERYTHING
By Lorraine Duffy Merkl

“I would do anything to help my child.” Who hasn’t said that and followed up their words with actions? But the parents of special needs children get to prove it on what seems to be a daily basis, since there is always a new therapy, medication, school or tutoring option being presented to us. And we often leap before we look. Even when a program doesn’t sound quite right, hey, like the lottery, you never know. What if this one thing you choose not to try is “it”? Aside from fearing that, we get afraid of being branded as the mother who doesn’t care enough to go through the wringer as well as her life savings.

I learned the hard way that doing “anything” may not always be the best thing.

My daughter, Meg, is 13 now, so I have been working the special needs circuit in New York City for a decade, which means I speak “alphabet soup”: The C.S.E. at the D.O.E. prepares her I.E.P for her A.D.H.D.
Special Needs parents are always relentlessly looking for, what one mother I know referred to as “the magic bullet” that will relieve our children of what keeps them out of the mainstream. Perhaps it’s that American “can do” spirit; or in my case, it’s that New York “let’s get this done, already,” attitude that motivates us. O.K. My child has a difficulty: verbal apraxia, sensory integration, low muscle tone, allergies, etc. This is the 21st century, we think. There has to be a solution. Who takes care of this? I don’t care how much it costs. May I have it now, please?

But “now” is never really an option. First, there are “evals” to be had. I have filled out the same standard evaluation form so many times, I no longer even have to read it. Next is the evaluation itself. The diagnosis discussed at the meeting. Then there are the therapy timetables to adhere to (once or twice a week in the office, with a program to be followed at home.)

At the risk of sounding like a sit-com mom, I give and I give and I give, yet, no matter how much I do sometimes, I don’t feel as though I’ve done enough.

I have spent a great deal of time, money and effort trying to help my daughter. Some things have moved the needle, others haven’t. Just when I’d accept that I’d done the best I could, I’d see some magazine cover screaming, “Jenny McCarthy Cures Son of Autism!” Then I would jump on the next bandwagon so that I, too, could find a “cure.”

On the flip side, I also feel guilty for what I deprived my child of. For the longest time, she had a room full of toys yet had no time to play with them because after school we went to (pick a therapy: speech, occupational, play, vision). By the time we got home, there was dinner to be had and perhaps homework to tackle, then the tub, then bed.  

I also have another child who deserves attention. I did my best to get everyone what they needed, but I can’t say they always saw me at my best while I was doing it. All the running-only-to-wait in some therapist’s outer area, then running home again, wore me down. In my 20s and 30s, people who tried to guess my age always skewed five to 10 years younger. Now, I think they’d tack on a decade. All the worry and anxiety definitely aged me.

So after having tried “everything,” there was one thing I had never dared to do: nothing.

Yes, there were still therapies she needed, but I finally decided that none of them had to be done at breakneck speed so we looked as though we were participating in some extreme sports event. For some inexplicable (not to mention illogical) reason, I always thought that the faster we got where we were going physically, the faster she’d get to where she needed to be mentally or emotionally. So I stopped.

I began by arranging for speech therapy to take place during the school day. I exchanged OT for gymnastics (an activity as opposed to a therapy) and put an end to vision and play therapy as I was not seeing marked results. My days of, “We’ll give it another month/year/decade before we give it up, just in case …” were behind me.

I also cut loose the “magic bullet” method I’d watched a news report on, sought out as though it were the Holy Grail, and threw money at, only to feel like an online dater who meets the person she’s fallen for on eHarmony, and only to see that Mr. Tall-Dark-Handsome is a Lou Costello clone.

Two years ago, for the first time since she was a toddler, Meg started to actually have free time after school for creative (and quite therapeutic) play in her room; to beat me at many, O.K., all, her board games (a great self-esteem booster); or just sit and — dare I confess — watch television (a k a relaxing).

I do not regret the efforts I’ve made to help my girl, but I do regret the Indy 500 pace and blind trust I put into whatever was put in front of me by whoever I was talking to at the moment. I also wish I would have realized sooner, rather than later, that although I want to give her everything, sometimes “nothing” also helps.