It has been a little over 5 months since the dx, and we are just getting started with some of the services/therapies offered by local state agencies. The process was much too slow for my anxiety, and I nearly fell off the wagon in fear and desperation. It seems as if the whole world is urging parents to get intervention and supports AS SOON AS POSSIBLE, implying that if you don’t get them soon enough, you are not doing all you can to help your child and indirectly damaging him. And the guilt. Need I say more?
I have also gotten a lot of pressure that I am not a good enough advocate, that our local school district concluding that N is not eligible for services and me not fighting tooth and nail about that, is a sign that I am not doing all I can for my child (which all points to me being an inadequate mom, and back to the guilt again).
My child is unique, as is any child on the spectrum, and any child in general. Frankly, I see the school district’s point of view and although I was annoyed at certain parts of the process, I did feel like the end result was what was best. Their framework is within what is needed now; whereas for me as a parent, my framework is what is needed in the long-term. They are about intervention, I am beyond intervention and all about prevention (as he is doing very well in his current placement with little supports, so there is actually very little to “intervene” at this point). Of course this can change in a flash, as we will be approaching K this fall, with a brand new school, brand new teachers. But we will deal with those situations at those times, if they become problematic.
As for the local regional center, they had previously denied us services, and when I came back to them with the dx, they were skeptical but had to accept it because it came from the UCD MIND Institute (I have noticed that the source of N’s dx has really helped open doors for him; it does give us confused looks as he doesn’t present himself as “classic autism” but no professional that I have come across has dared to question the dx because of the source, and for that I am quite thankful). The process in re-opening his case for the second time was a bit time consuming and a little ridiculous (I was on the verge of just showing up at their office to get things going, but my slightly annoyed voicemails were enough). So we are finally assigned a case manager who is doing a home visit this week. Per UCD’s recommendations, in preparation of this visit, I may have to hide all the aspergers books, haha.
OT was my biggest concern, and we have finally gotten a referral and an initial assessment for sessions. Our deductible is quite high and it is a 40 min drive, but for now, we’ll make it work.
In a way, I am kind of glad for the slowness of these things. It led me straight into panic mode because of my desperation and anxiety, only to find that I was really seeking after all these things to give me security and comfort for my son’s future, and they were no guarantee at all. When in reality, my faith and trust should not be in a program or a method or even a particular result; none of these things really guarantee anything and sometimes increase my frenzied worry over every little thing. Instead, trusting in a Person has gotten so much more tangible (not saying that it’s easy though!) and although it is not a guarantee that God will change or “fix” my child, I trust that He knows what He’s doing and we are in His hands. No matter how the journey or the results will be. His sovereignty is a refuge and a lasting comfort. If anything, the true transformation is not really with therapies/services and my child gaining skills or whatnot, it is about myself and my heart. God is using my child’s situation to change my heart.
The Holy Spirit reminds me every now and then to check my heart. I’ve already caught myself a couple times (it is so subtle though!!) where I was falling into trusting a program/method, or even distracting myself with something useless for avoidance purposes. There are times when we were presented with opportunities of concrete hope and a path on how things would go (i.e referred to a fellow Aspie mom who could tell us the ins and outs of a particular school district that we are seriously considering; and she suddenly became indefinitely unavailable and I recognized it as a sign that God wants the unknown to be with us in order for us to trust Him alone… because I would have taken her words as gold and traded in my faith in order to rely on her experience as my own).
This has been a little bit of a rambling post, so I should probably end it for now, and help N with his lego project. Somehow we got a lego catalog in the mail (how did they find our address?! lol) and he took a look at one of the pages (a very elaborate 2-story house) and asked, “Mommy how do I make this?!” And I had to gently tell him that we didn’t have those special lego pieces for that project. So he’s set out to make his own version of that house with his limited Duplos…. by the way, I cannot tell you how ecstatic I am that he is starting to play with other things besides his usual rigid letters/numbers…