Blue Boy and Beany

Two moms, twins and autism.

Autism Diagnosis: Now what do we do?

My personal experience with receiving a diagnosis for myself  is that it comes with a treatment plan. High blood pressure – take this pill, exercise, lose weight, monitor your numbers and check back in 3 months.  Pretty straight forward, very prescriptive.  Not so with autism.  Blue Boy’s diagnosis came with about 10 pounds of documents, dozens of links to “helpful” websites, a suggested reading list for parents, and 9 separate treatment recommendations.  There is no plan, just a lot of information that the parents are left to sort through, understand, and somehow apply.

Mommy suggested we develop a flowchart and work our way through it.  Great!  A road map….I like maps.  I started by putting a bunch of ovals on a page.  The idea was that I would put each of the recommendations in a bubble and then we could “connect the dots” in a way that made sense and resulted in a plan for moving forward.  Here is my vision:

All Better Flowchart

Problem was, nothing made sense.  A speech therapist?  He talks, does he really need a speech therapist?  An occupational therapist?  Well, this made a little more sense once I understood it was for sensory issues and not about employment.  Where does this go? I dunno, just stick it in a bubble, we’ll rearrange the bubbles and connect them later.  Early intervention services…that sounds good, but isn’t that the same as speech therapy or OT? Bubble.  Early intensive behavioral intervention…I don’t like the sound of that one, makes me think brain washing. Don’t even want to put this in a bubble.  Just keep it all on the table, open mind, keep an open mind I told myself.  Fine, bubble.  Functional behavioral assessment.  OK, sounds like we should assess behavior before doing a behavioral intervention….Oh, snap.  Wait a second, this is talking about problem behaviors and the intervention bullet is talking about autism-specific therapy like ABA.  WTF?  Bubble.  OK, what else is on the list.  Social skills.  He’s 2 for crying out loud, don’t all 2-year-olds just parallel play at this point? OK. OK. Bubble.  What else?  Something has to make sense. Re-evaluate and ongoing monitoring.  Yeah, whatever.  Bubble.  Medical follow-up for genetic testing. What good is that going to do?  We can’t change his genes and besides, he nearly tore my ears off during his 2 year well child visit trying to get away from the doctor by climbing over the top of my head.  A blood sample?  Bahaha!  Oh, wait. Final item is overall program structure…should’ve started with this one.  At least 25 hours of intervention or active engagement, preferably in a 1:1 environment, per week.  Are you f-ing kidding me, how are we going to fit in 25 hours of therapy in a week let alone pay for it.

So we took a deep breath and started arranging bubbles and trying to connect them.  We got something similar to this:

Reality

Lots of question marks and no clear path – we had no idea where to start.  We called back the autism clinic and told the doctor we were overwhelmed…she told us to start with early intervention through the birth-to-three program but to be aware that Blue Boy might not qualify for much.  He was not showing any significant delays (yet…I thought to myself in a moment of despair) and standardized tests often failed to quantify the “deficits” associated with autism.  She also reminded us that we didn’t need to do everything at once.

Today, I can look at all of the bubbles and I know right where everything goes and how it all fits together.  In the immediate, emotional quagmire of a diagnosis it was daunting, overwhelming, emotionally paralyzing.  Ultimately, a lot of early decisions were made for us due to availability of resources.  Birth-to-three qualified Blue Boy on the basis of his diagnosis alone.  However, since he wasn’t significantly delayed in any area (yay!) he only qualified for one hour a week with a special education specialist (boo!).  Hardly the recommended 25 hours.

I hit the reading list hard.  I tried unsuccessfully to negotiate extended leave without pay from my workplace (that my mom graciously offered to subsidize) so that I could focus on educating myself.   I purchased a bazillion books and received many more as a generous gift from my sister – I now have my own autism library.  With no large chunk of time to devote to reading, I did a lot of skimming.  Luckily, I got pretty good at picking out the highlights and letting go of interesting-but-not-necessarily-immediately-useful information.

When I started going through ‘More Than Words’ by Fern Sussman I quickly understood that Blue Boy did need a speech therapist to help with his flexible speech and communication skills since so much of his language was not “functional” and his non-verbal communication was severely delayed.  We are fortunate to have private insurance and Blue Boy started receiving 1 on 1 speech therapy shortly after his diagnosis.  It was a rough start with a lot of anxiety, but Blue Boy loves his therapist now and is very comfortable with her.  I go to all of the sessions and it is often the highlight of my week.  It has made a huge difference in our ability to communicate with and understand Blue Boy.

We knew Blue Boy had significant sensory issues, but they were difficult to ferret out because they seemed to change from day-to-day and situation to situation.  He is a very cautious and anxious boy and our primary goal in this arena was to help him feel more comfortable and confident in the physical world.  We put our names on a 3 to 6 month wait list for occupational therapy services at a clinic that uses  DIR®Floortime™  techniques.  We chose this clinic because their approach focused on how individual differences in sensory processing impact overall functioning.     The practice empowers child-parent interactions and helps parents understand how individual differences relate to the range and variation in sensory, sensory-motor and motor planning abilities.  It took about 4 months for a slot to come open, but Mommy takes him once a week and we are really starting to see changes in how Blue Boy relates to his environment.  He actually jumped off a curb the other day and planted two feet squarely in a puddle.  It was awesome.  My jaw dropped.  I had never seen him jump off of anything unless there was a big soft mat to land on.

Blue Boy’s doctor emphasized that getting him into a structured environment with other children should be very high on our priority list – this was the social skill component.  Preferably, something preschool-like that would require him to participate on terms other than his own.  This would be a tall order.  We had tried community music classes..he loves music.  Disaster.  He mostly just screeched and wanted to hold the blue egg shakers and only the blue ones the entire time.  This social skills class would also have to be something that Beany could go to and that our Nanny could bring them to….it would just be too many hours for us to be off of work.  We were looking for something that would be a couple of hours, two days a week.  Ultimately, we switched birth-to-three providers and gave up our 1 hour of in-home special education time for 3 hours in an integrated toddler program.  We figured it would be a tough transition for both Beany and Blue Boy, but that they would adjust to 1.5 hours in a “preschool” two times a week.  Ummm.  NO.  Six months into it and their Nanny is still in the classroom with them due to anxiety issues.  As long as she is there then everything is OK.  They even seem to enjoy their time and after weeks of boycotting circle time they sit on their little mats and sing songs and do all the hand motions.  Good has come of it….all I can say is that it’s a work in progress.

So, let’s see.  That’s just 5 hours of “therapy” each week – a far cry from the recommended 25 hours.  But, we decided it was enough.  Speech, OT, and “school” – it’s a lot when you are only 2.  We pursued parent training options so that we could make the most of his non-therapy hours.  It’s been a challenge because we both work and he and Beany are with a Nanny for the better part of the day.  A Nanny that loves him (and Beany), but doesn’t think there is anything wrong with him other than his anxiety.  She engages him better than most.  So, for now, it works

It’s been close to 9 months since we received Blue Boy’s diagnosis and therapy decisions are a new constant in our lives.  It is not static…I’m sure there is more to be done.  We are currently in the middle of the assessment process to determine if Blue Boy will be eligible for special education services when he turns 3 in the middle of May.  We need to decide where he (and Beany) will go from here….integrated developmental preschool or a private preschool?  Same school or different?  How will that affect OT and speech?  What else should we be doing?  What should we not be doing?

The questions and need for decisions never end.  And, while our questions may be different from those faced by many other parents, I’m learning that parenting is all about making the best choices for your children regardless of the path they are on. For me the hardest thing to do is nothing.  I want to keep throwing “fixes” at Blue Boy – I am learning to take my cues from him.  To allow him the space to be who he is while challenging him to stretch his comfort zone in a way that he can be successful.  It is difficult.  We are all growing.

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