Sunday, February 17, 2013

Pre-School Purgatory

Change is upon us.   Nicholas has been excelling at his ABA program since this past June.  It pains me to say that we will no longer be able to continue this therapy.  We began this summer, just after the diagnosis was made, with the knowledge that legislation was being passed in the state of Michigan in October requiring insurance companies to cover this type of therapy for those with an Autism diagnosis.  Of course, nothing is ever simple, especially when it comes to insurance coverage. We did not expect simple, or even quick, but we did expect follow through.

It has now been four months, and things are still not ironed out.  Our annual deductible has started fresh again, so even if these insurance issues are resolved soon, we will still be footing the bill for more than we can handle after paying out of pocket for the past 8 months.  (OH, so THAT'S what 'they' were talking about when 'they' said Autism families often go broke and/or remortgage houses to pay for therapies and medical expenses....I could never understand how this was possible. Now I do.)

At any rate, we have been forced to make a decision, and a very tough one at that. ABA is no longer part of our routine. We are done for now.  However, as I explained in IEPhew! Part III, Nicholas is being referred to, and considered for an ASD-specific classroom in another school district.  This process is well underway, and the second observation by the new district occurred last week. Following this, a meeting was held (privately) to discuss the feedback of the receiving school district.  (to date, I still have no details about what this feedback was...) The fact that a second observation  even occurred gives me hope that this decision might go in the direction that I'd hoped, but even if it does, there are some downsides to consider.  While the program is a full day program (which is one of the main reasons I pushed for this) the methods used in the room are not the same as ABA. Some may be similar, but they are not the "tried and true."   Now, I don't believe that any child only learns with one method of teaching, but it's scary (and guilt-provoking) for me to walk away from a teaching/therapy style that has worked so well for Nicholas in recent history. I've said many times, that in all of his interventions that he's been through in his short lifetime, I have not even seen a FRACTION of the progress that he's made in his only 8 months of ABA.   If I commit to this classroom, there is no time for him to return to ABA if it turns out that this new place does not measure up to my expectations, or his learning style. It's a big gamble.  I don't like gambling.

On the flip side, ANYTHING is better than the situation we have going on now, and I have actually since  been in contact with a parent who knows this "potential future classroom" very well, and speaks very highly of it, so I feel that it is now much less of a gamble at least than when we started this process.   Unfortunately, in the meantime,  I can feel the clock ticking (slowly) and my anticipation growing every single day that this decision will be made soon, because now I am witnessing Nicholas' gradual regression with each passing moment....because he is home with me.  All. Afternoon.  On his Ipad. From which I CANNOT separate him.  With his hands constantly in his mouth, and his constant need to stim. While I change diapers, clean messes, wipe faces, calm crying, and try to run a household with three children under age 5. 

It's not good people, it's not good at all.

As much as my intentions are there, I am not a therapist, nor do I have the resources to allow me to even TRY and be a therapist (and by "resources" I mean having sixteen arms, a minimum of three bodies, at least two sets of voices, and a boatload of patience)  Further, it is very clear that I am doing my son an incredible injustice by having him here with me (you know, just his good 'ole Mommy who supposedly knows more than anyone about his needs) all afternoon while I am unable to deliver the interventions that he so much requires in order to stay on track.  It kills me every day to witness and be responsible for this fact.   I actually only recently realized, that this is the very first time in his life that he has not been enrolled in some type of what I will call "extracurricular activity" (a.k.a. Therapy) since before beginning school.  We are now officially off the map....flying through the clouds....lost at sea..... and I have no idea how to do this!  Our life has never been this unstructured!

In the past two weeks since his ABA therapy has ended, we have been surviving  a major adjustment period.  My general day (in my recent past life) consisted of running to and from the gym in the morning, (sans no sick children) and to and from therapy twice a day in the afternoon, all the while juggling anywhere from 2-3 toddlers in the process.  Squeeze in a few mealtimes, bus stop responsibilities, random doctors appointments, meetings with schools, diaper changes, and play time, and this makes for a pretty full and complete day, albeit chaotic.

NOW, (Post-ABA) my day looks  more similar to what I can only assume a "typical" SAHM's day looks like....yes, I'm going out on a limb and making an know what they say about those....  Anyway,  my mornings are pretty much the same as they have been all school year, with the chaotic 'breakfast-get Nicholas on the bus-get to and from the gym with the other kids-get home in time to meet the bus-then feed the kids lunch' routine.   However, normally, I am spending a good part of my early afternoon planning meals, snacks, filling milk cups and bottles, timing diaper changes,  and packing diaper bags to make the trips to and from therapy go as smoothly as possible so that somewhere in between our two trips up and down that familiar 3 mile stretch of road, the other two children take their mid-afternoon naps. This nap, is infinitely important to ANY parent who stays home with their young children... because even if for only 30 minutes, it means that we may have peace, quiet, and a few minutes of ME time if the stars and moon align properly and allow this to happen.    My attempt at perfecting our travel schedule timing to allow for this  is something of an engineering feat of miraculousness (yes, I made that word up just now) which requires precision and accuracy of epic proportions.  I have worked very diligently to master this art, and have nearly done so on many occasions!

However, there is no longer a  need for this scheduling miracle.  We no longer have anywhere to be, and nothing specific to do in the afternoons!  Perhaps now we could even squeeze in some play dates and trips to the mall!?!?!  Ahhh, what a sigh of relief!   But not so fast....while it is certainly a pleasant change, and much less stressful in many ways to be able to simply stay home with my children in the middle of the winter, every afternoon, I have now found a new level of stress to replace it.  The stress of not being able to address the needs of my autistic toddler. The stress of watching him slip slowly back into his world of  isolation, fed by his IPad games and television shows, of which I am guilty of allowing out of sheer necessity when I am managing three little ones on my own. (Believe me, it is not as simple as just taking these things away...if you have an autistic child, I don't need to explain to you the ramifications of this....if you don't, well, just come by my house one day and I'll show you what happens...)   The stress of my inability to engage him in the ways that have been successful in our recent past.  The stress of not knowing what our next move will be, or even WHEN our next move will be.... the stress of what I keep thinking of as 'Pre-School Purgatory.'

Yes, indeed, change (and hopefully for the better) is coming for us, and our current situation is only temporary.  But a lot is riding on what happens in the next few weeks, and if things do not go our way, yet another set of decisions will have to be made regarding therapies, schools, and future plans for my little man and for our family as a whole. I haven't a clue how long it will take to finally reach a decision and move forward, but I can only hope that we don't have to start from square one when that time comes.

Between now and then, I suppose I should just try and sit back, relax, and enjoy the new found flexibility in our schedule.  But that is hard to do when you know it is at the expense of one of your children.  Then again, perhaps I shouldn't fret after all, since it is possibly a gain for my other two....see how mentally complicated this gets?

Anyway, in the mean time, I will hope and pray for the best, and try to make the most of our new routine.  Maybe now I can actually make some dinners, or play games and do some crafts with my 2 year old, or sit and read a book to my 1 year old, or schedule play dates with my friends' kids, or visit grandparents.  Whatever the case, I know that purgatory isn't forever, and I will try and find a way to savor it.

Until next time....