(See post from early February for background…)
This diagnosis comes with baggage. Not just the baggage that we brought to it: all the early denial that it was even a possibility, all our preconceived ideas based on Rain Man and the media hype and prejudice…
No, literally, we left the Developmental Medicine Unit at the Children’s Hospital with a heavy folder full of sheets and sheets of information, most of it links to resources with more information. And when we contacted the resources, we got more folders with more information and more links. More baggage.
It’s a whole big Autism world out there. There is so much to figure out, to get in order, to set up, to enroll in, to check, to freak out about….
We’re getting familiar with the lingo, the various therapies, the services, the systems… familiar, and also overwhelmed…
The Developmental people recommended that Babyboy have 25 hours of therapy weekly. That’s like, a job. He’s not even three years old.
But, it’s been hammered into our heads that the earlier and more intensive the therapy, the better the outcomes for children with autism. They can learn language, communication, and social skills– IF they’re started young enough, and the therapy is good enough.
So far, we’ve felt safe and secure with Early Intervention (EI), a state-provided service for children age birth to age three with special needs. They evaluated him for speech delay last summer, and they set him up with a real speech therapist (certified Speech Language Pathologist), as well as a Behavioral therapist to aid in communication skills, and a music therapist, for, as far as I can tell, fun.
Since the diagnosis, EI has increased his Behavioral therapy hours, and referred us to an agency that does ABA (Applied Behavioral Analysis), which is, as I understand it, like micro-behavioral therapy. They come and spend big chunks of time with your child, and work to reinforce small, concrete behaviors, starting with basic things, like making eye contact.
But once Babyboy is three, he’s booted from EI, into the school system. We’re not sure what happens with the agency ABA services. So, a few months from now, we don’t know where his 25 hours of therapy is going to be coming from.
Since Babyboy’s diagnosis in February, every care provider he has has hinted or outright advised us to speak to an “advocate”, i.e. lawyer. His pediatrician, to whom we give credit for being the first to suspect that something was amiss, and who pushed us to get an evaluation started, gave us the name and contact information of an advocate, explaining: “Families with advocates tend to get more comprehensive services from schools, as well as have another good resource to bounce things off.”
The Developmental specialists told us flat out, at that diagnosis meeting, that some families in some towns have had to fight for services for their child, and that we should be prepared, and to ask them for guidance if we need it… “Don’t sign the IEP (individualized Education Plan without talking with us first“.
And about our school system, we’re hearing mixed messages. On the one hand, we’ve been reassured by our EI team and many folks that our town has a wonderful school system, bountiful with programs and services for kids with special needs, the envy of people all over the place.
On the other hand, I am reading that services are being reduced, that they aren’t as likely to provide services to a kid who isn’t even in the school system yet.
And so, we’ve started to panic a bit. Babyboy will be three at the end of June. The town does have a specialized summer preschool program for kids with special needs. EI wants him to start in that right away, so he doesn’t have a month gap in services between his birthday and the fall, and so he transitions better into “real” preschool.
He does, after all, struggle especially with crowds and being with other kids. He’s done so amazingly well with the behavioral therapy, speech therapy and group sessions through EI… Babyboy has made enough progress so far that we’re believers in the “early intervention” treatment.
But what if what I’m reading is right and we end up without services through the school for 3 months? What if what the Pedi and the Developmental folks had warned happens and we’re left without a plan or a team for Babyboy this summer, at such a critical juncture?
Now we’re wondering whether to hire one of these advocates (at great expense), or simply to pay for piecemeal private services for a few months (at great expense).
Anyways I’ve begged Nana to watch the kids for two hours tonight, so I can attend a school district meeting for parents of children with special needs, on exactly this topic. I’m hoping to be reassured….