This past weekend, my husband and I went to the Autism Now conference in Maryland. Something I am beginning to learn (that I’m sure all of you more experienced Autism Mothers will nod in agreement with) is that there is a ridiculous amount of websites and organizations out there who deal with autism. By “ridiculous”, I mean that it is ridiculously shocking that I didn’t know anything about this world until The Diagnosis, given that the planet of autism is so large. Seriously. So many people working to figure this thing out, provide resources, cures, tips, diets, stories of hope (not enough stories of bitching about how much this diagnosis sucks, IMHO), etc., and the rest of the world walks around oblivious to it. To our struggle.
But I digress from the original point of this post.
We met a lovely couple there, which made the conference that much more worthwhile (cause we already knew Medicaid ain’t gonna help the Middle Class likes of us), who turned us on to all of these do-it-yourself programs like –
This couple, like us, cannot afford the oh, um, $10,000 cost of these retreats and private consultations. No surprise there. But I was given a big slice of cake for thought when I learned that this couple – much like us – works, sends their daughter to a SPED program in a public school, doesn’t plan on quitting their jobs, is on the GFCF diet, and…has implemented their own autism program in their home that they do 7 days a week after work. We still have more to discuss with them, but we learned that they are combining the volunteered time of university students (in occupational therapy, speech therapy, special education) – who need a certain amount of time spent working with children in order to earn their degree – along with the passed down information from a parent who could afford to attend one of these trainings, PLUS an occasional $130/hour consultation from a local private school on autism, to construct their own intensive treatment program, alongside their day jobs and attention on their other non-autistic child.
This got me to thinking: should I give up my business to work intensively with Max, using a combination of all these methods, alongside a healthy heaping of “Can-Do”, “We’re-Gonna-Cure-This-Thing-a-la-Jenny-McCarthy”? A better question to ask myself is:
Can I actually will myself to do this for 40 hours a week?
Or how about….
If I can’t muster up the will power (because I’m not a particularly good teacher, nor would I be able to separate the daily disappointments and frustrations from the necessary teaching tasks and goals), will I be assigning Max to a lifetime of autism that might otherwise be cured, if I wasn’t such a selfish mother?
I don’t know! And I wish someone could tell me what program would work best for him. That way, we could skip the stuff that is simply a waste of time and money.
Fact is, I’m not a good teacher. Tried to volunteer my services one year at a city program and quickly learned that I was not helping anyone.
During my short-term Cure-Autism activities at home, despite my best intentions, I cannot keep a permanent smile on my face or maintain a constant eye on the Larger Goal when it comes to working with Max, because I love him so much and it hurts me to see him struggle (and frustrates me that whatever method I’m trying isn’t working).
So how could I possibly do this for 40 hours a week? Alone. In a room. With Autism. And my son.
It’s the not knowing what combination of services that Max needs that is probably the second most awful thing about autism (after the realization that your child has autism, of course). You’re just walking around flailing, ready to buy into any cure that blows by you in the wind. It’s so hard not to a) get tempted to try them, because they cured so-and-so, so why not Max, and b) layer so many treatments on top of one another that you can’t keep track of what might be producing results vs. what’s a bunch of quackery.
So please, could someone send a psychic on over here, so we can finally get this show on the road? That’d be great, thanks.