Dear Autism Intervention Providers: Women work now

As I’ve mentioned before, the big Three-Oh (3.0 years old, that is) is approaching quickly for my kiddo with autism.  She’s aging out of the state early intervention program.  We recently discovered something about every program for 3-5 year olds with autism in our area: they are designed for stay-at-home parents.  Has the autism community not gotten the memo that women have joined the workforce now?  Working parents need quality all day care for their children, autistic or not.  We’d be happy to pay a bit more for such a program if that were an option.  I’d love comments from anyone about whether things are similar where they live for care for children with autism in the 3-5 age bracket.  I really wonder whether this is because I live in a mid-size Midwestern town, and if things would be better in a major urban area by one of the coasts.

We thought we had a plan for the age 3 transition, but this week, we’ve realized our plan is untenable.  The original plan was: she’s eligible for early childhood special ed, essentially a part-time preschool run by the school district for special needs kids to get therapies and interventions.  This is typically 8:30-11:30 AM, Monday – Thursday (although not always, and we won’t know her specific placement for a few more days, about 2 weeks before her birthday).  This preschool program is run out a building on the far edge of town, nowhere near either of our commutes.  There is also a program run by the local Easter Seals chapter that does ABA with kids with autism, that is 12:30-3:30 PM, 5 days/week.  As you have probably already noticed, this means 1) someone needs to pick her up at 11:30, feed her lunch, and drive her to another location by 12:30.  Also, 2) someone needs to get her at 3:30 and care for her until her parents get home, and 3) Friday mornings have nothing.  Not great we thought, but hey, my mom is semi-retired (works part-time) and lives in town and is willing to help, so maybe this will work!

This week though we found out from Easter Seals that actually they can only do 2:30-4:30 MWF, and 12:30-3:30 on Thursday, and nothing on Tuesday (!!!!!).  Oh and the morning program from the school district doesn’t run at all over the summer.  This information made our plan go from merely very difficult to impossible.  Looking into other programs in our area, we found that there’s only one all-day preschool program geared towards kids with disabilities, which is not specifically for ASD kids and does not incorporate ABA.  And we’ve been on their waitlist since last November.  We hope to get in with them in August.  I also found 3 other programs that are similar the the two I described, 2-3 hours per day of ABA and/or speech therapy, 3-4 days/week.

So, new plan.  She’s currently in a “regular” all-day preschool environment, with therapists that come work with her there every day under the state early intervention program she is about to age out of.  But, we have lots of “make-up time” on the books, meaning every time someone cancelled because of illness or whatnot, we can have them “make-up” those sessions even after she turns 3.  So the floor won’t fall out for a few weeks yet.  But once her make-up time runs out, it’s the end of formal ABA, speech, and occupational therapies for her, and it means greatly reduced help at preschool, unless we come up with another plan.  Also, the preschool will need to “hold her back” because the 3-year-old room requires potty training, which she doesn’t yet have.  We’ve already privately hired one of her ABA implementers for part-time care, and we are partially reimbursed through a county program.  We can use this to keep this particular implementer on indefinitely, with some manageable cost to us, but without the BCBA who designs the ABA program.

All of this is super frustrating.  Why are we only being given important information 2 weeks before the big change over, despite being in touch with the relevant people since last December?  More than that, why are all these programs only 2 or 3 hours here and there?!  It seems like the only way to actually use these things is to have a stay-at-home parent.  None of this is designed for someone who works even part-time.  I literally feel forced to choose between my academic career, which I have worked really hard for my entire life, and getting the best interventions for my child with autism.  Not only is it not fair to ask myself or my husband to give up our jobs, we wouldn’t be able to afford our home without both incomes.  We could potentially do something really drastic, like have one of us quit our jobs (with greatly reduced earning potential forever as a result, we’re both early in our careers) and moving to a much more modest home (not that our home is particularly extravagant).  But we’re not going to.  We’re going to do the best we can with what we have, and hope that she’ll do OK.  We may or may not also do the morning preschool program, with attendant driving across town twice a day, depending on what we think when we finally get to see it.

 

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