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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Letting the diagnosis sink in

Even though my daughter was diagnosed with autism almost 8 months ago, I find that I am still processing the news.  Despite creating this blog, and despite the post I wrote for Break the Parenting Mold in which I complained about others trying to convince me my daughter doesn’t have autism, I sometimes doubt the diagnosis myself.  Sometimes I think maybe she really isn’t autistic, that she’s just a late bloomer, and it’s all a mistake.  Or that she’ll be one of those kids with “optimal outcomes” who lose the autism diagnosis.   After all, she has made huge strides since beginning intensive ABA, and her therapists say she is the fastest learner they have ever seen.  I’ve had doctors comment that she is “clearly very intelligent.”

But inevitably, just as I’m thinking that maybe my child doesn’t have autism but is really just a smart late bloomer, something reminds me that she is in fact autistic.  She might start rocking back and forth or flapping her hands in excitement, or refuse to respond to her name, or refuse to get out of the car in the driveway when we usually do that in the garage, or insist her milk is served correctly or there will be a major meltdown.  (It’s often unclear to me what’s incorrect about the milk being served, leading to a frustrated, super mad toddler screaming at me and throwing the milk, and a confused mommy knowing that she in fact really does want it, and trying different ways of serving it until one works.  Most recently, the thing that worked was putting the milk in the lowest part of the fridge door and leaving the fridge open so she could get it.)

So my daughter has autism, and probably always will.  Therapy has certainly been a huge help, but her stimming behaviors are still prominent, she still has problems with social interaction, she still melts down when routines are changed.

I think a lot of the difficulty in processing the diagnosis is confusion over what it really means to begin with.  I’ve read the DSM-V definition, and my daughter certainly fits.  But what really is autism, other than just some checklist?  Autism is different for everyone so generalized descriptions are hard.  Because of that it’s easy to wonder if there really even is a definition, if it’s even really a “thing.”  It’s difficult to wrap my mind around what this diagnosis actually means in terms of what my child experiences, how to best parent her, and what her long-term outlook looks like.  The parenting one is especially hard, because we are first time parents and there’s no book for autistic parenting.  Or rather, there are plenty of books, but as every case of autism is different, they aren’t necessarily applicable to us.  I wonder if my guesses about what the best parenting methods are might make the difference between a child prodigy and someone who needs round the clock care as an adult.  I am at once grateful to live in a time when autism is recognized and some effective treatments are available, but also disappointed that there isn’t more progress in explaining autism, wider variety of treatments available, and more knowledge about how to tailor treatments to specific children.

I suspect I’ll still be processing the diagnosis and figuring out what autism really means for my family for a while to come.

Stimming

Stimming is autism terminology for self-stimulatory behavior, or anything that autistic people do to stimulate the senses that they find soothing or enjoyable.

My daughter has a number of stimming behaviors that we see on a daily basis.  For example, she often spins in circles reciting the alphabet, or bounces up and down on her heels while counting.  When excited, she rocks back and forth rapidly.  When sitting down, it looks like she is energetically rowing an invisible boat.

My husband and I very much subscribe to the idea that stimming is not to be discouraged, but rather accepted as part of who our daughter is and even celebrated.  Stimming helps her calm down when she is bombarded with too much sensory input.  A common misconception about ABA therapy is that the therapists will punish or prevent stimming, but our experience has been that the therapists accept and wait out stimming behaviors.  Her therapy team is completely on board with our attitude.

The exception to the rule is when stimming becomes self-harming, which is unfortunately common.  In my daughter’s case, she used to bang her head against the wall when she was tired.  We did discourage that behavior and it has since naturally stopped.  In the past few weeks, a new behavior has emerged.  She now smacks herself in the face, usually in the forehead area.  She even leans into the hits.  I am torn about this, because she doesn’t seem to be causing any viable damage (skin looks normal) and I doubt she is hitting herself hard enough to cause any internal injury.  But if I allow this to continue, who knows what it might turn into, plus it’s just disturbing to see your child repeatedly hit themselves.  She also has a very high pain tolerance, seeming to not even notice falls and scrapes that would have other toddlers bawling, so I worry she may hurt herself and not notice.  I’m going to ask her doctor about this at her next appointment, but it’s a month away.

Kiddo also enjoys makes lines out her toys, like many autistic children.  I’m not sure if this counts as stimming but I’m including it here because she made some nice lines this weekend and I thought it was cute.  Notice how the boats have been given their own line, and all the airplanes are sorted out in a pile at the back.

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Milestones

Milestones are a funny thing, especially when you have a child with autism.  My daughter’s first two syllable word was “seven.”  She said that before she called me mama.  Her first three syllable word? “Eleven.”

It should come as no surprise that I’ve thrown most of the typical child development milestones out the window.  Or at least, I’ve tried to.  The advice parents of children with autism or other conditions often receive is to compare your child to themselves and not other children or lists of milestones.  This advice helps me see my own child’s progress, but of course, I can’t entirely ignore how her peers are developing.  It can be very difficult seeing her next to typically developing children, especially in the realm of language.

My daughter’s language abilities are her most severe delay.  About 7 months ago she had a developmental assessment as part of the process of enrolling her in the state early intervention program.  In our state, these assessments assign an equivalent age to each child’s skills in a few areas, and a child qualifies for services if their equivalent developmental age in at least one key area is less than half of their chronological age.  At the time of her assessment, she was 20 months old.  Her language skills were that of a 4 month old.  Our coordinator said it was possibly the most significant language delay she’d ever seen.  I still remember listing to the voicemail over the car speakers with my husband as we drove to visit relatives for Christmas.  We sat in silence at first, and then I voiced how scared I was for our daughter.  My husband tried to reassure me, but was plainly scared as well.

Today she is talking some.  It’s unclear how much credit goes to therapy and how much to just the passage of time, but I really believe the therapy has helped a lot.  Her speech is coming along at a faster rate than anyone expected, and she’s closing the gap but still has a fair amount of catching up to do.  Once she started talking, she absorbed new labels with hyper-speed.  For concrete concepts, like the names of objects, she only needs to be told once or maybe twice and she’s got it.  She learned the alphabet (not the song, but how to identify the symbols for every letter) in about an hour, and she quickly learned to count to 10 and then 20.  More abstract or social concepts, like requesting, or saying “hi” and “bye,” or communicating feelings are more difficult.  She has a few requests but we’re still working on the rest.

About 2 weeks ago we hit what is for me her biggest milestone to date, and I didn’t even see it coming.  One day after speech therapy I was kissing her face, as I often do, and it seemed like she puckered up and kissed back.  Surprised, I asked her to kiss me again.  Unmistakably, she puckered her lips and planted a big kiss on my lips, complete with a “muah” sound.  Since then, she has given kisses upon request to daddy, grandparents, an uncle, and even some of her therapists.  She doesn’t always kiss when asked, just if she wants to, and she does sometimes give kisses unprompted.  I checked with all of her therapists, and no one taught this to her.  She just picked up on kissing as a form of showing affection all on her own.  I’ve honestly never been prouder of her.

Equine Therapy for autism?

I just signed kiddo up for an equine therapy program.  Since she’s only 2, she’ll start with a 30 minute class specifically for children ages 2-5 with disabilities.  If she sticks with it she can eventually move to a 60 minute class.  The horseback riding location is 15 minutes from her preschool and 20 minutes from home, so she’ll spend at least at much time in the car as she spends actually there, and more than she spends on the horse.  Luckily, Grandma has agreed to do the driving for this!

Last October, we took her to a pumpkin patch where she did a pony ride.  The pony merely walked slowly in a circle, but she was terrified.  She screamed the entire time.  That was more than 6 months ago, and since then, she has successfully pet mules without any issue (but hasn’t ridden anything).  I discussed this concern with the director of the equine therapy program, who told me that children are often terrified on their first or second time out, especially those with ASD because it’s such a new experience.  But typically by the third time they are enjoying themselves and opening up.

The whole idea seems a bit silly to me.  It feels like one of the quackery therapies for autism of which there are so many.  But intellectually I know that multiple studies have found a benefit from equine therapy for those with ASD.  (Here are links to two such studies: Study 1 Study 2).  So we’re going to give it a try.  Additionally, in our county we are eligible to receive some funding from a local government program that will pay for our equine therapy fees, making it completely free for us.

Has anyone in the wordpress world tried equine therapy, also called therapeutic horseback riding or hippotherapy for autism?  I would love to hear your experiences.

Autism therapy at home

My autistic daughter recently started her ABA (Applied Behavior Analysis) therapy.  Her therapy schedule is 1.5 hours/day at preschool and 1/5 hours/day at home, 5 days/week, for 15 hours of ABA.  She also has 1 hour of speech therapy at home, so a total of 16 hours, 8.5 of which occur at home in the evenings.  A typical evening looks like this:

4:45 Husband gets kiddo from preschool

5:00 kiddo gets home, we feed her

5:30 ABA implementer arrives.  ABA from 5:30-7:00.  Husband and I usually use this time to prepare and eat our own dinners, then participate in the therapy afterwards.

7:00-8:00 play with kiddo, possibly a bath in here.

8:00-8:30 getting ready for bed, bedtime for kiddo.

8:30 Husband and I collapse on the sofa.

It’s busy, to say the least, and leaves basically no time to keep our home clean. During the week we just try to keep the mess semi-contained, and then fix it over the weekend (this doesn’t always happen).  The weirdest part though is having the implementers and therapists constantly in our home while we are preparing and eating dinner.  We have the same implementer who comes every evening, and she’s great.  But she’s also an undergraduate at the same university where I am a professor, so that’s a bit awkward.  I did not imagine when I started as a professor that within a few months, I would have an undergraduate I didn’t know intimately involved in my family life.  I have never liked having new people in my home, and the whole thing makes my home feel less personal and more public.  Our implementer has always been completely professional and sweet with our daughter,  and the therapy is obviously working.  We are seeing tremendous progress.  So I have no doubt that this is the best thing for the kiddo, but it’s taking some getting used to for me.  Since our daughter just turned two, this will likely be our schedule for at least the next year until she turns three and becomes eligible for the local special education school for children on the autism spectrum, which will also provide her therapy.