Tonight by midnight, Jackson's Medicaid Deeming Waiver review paperwork is due. I did the initial online review, but they sent a paper packet after I finished that, asking for the usual fiery hoop jumping. I panicked at first, but decided I've jumped through these hoops and done this dance several times before. I can totally handle it, and I'm sure I could. This time though, I wasn't so sure I needed to.
We've been told since the first year of his diagnosis that with his exponential progress with therapy and educational resources we could expect him to 'grow out' of therapy. We were told he wouldn't be a lifer, but you can never pin down a timeline on these things. So, we plugged away sometimes wondering if there would ever be light at the end of that tunnel. Then it came, blinding and scarier than the darkness of the tunnel entrance.
I freaked out! First it was private speech therapy. "There is just no more I can do for him clinically," his therapist told us. Then it was school occupational therapy. Same deal. Then his resource teacher at his school (who is VERY close to us) told us he no longer needed to be pulled out of class for special instruction, and she felt he would benefit more from the time in his regular ed classroom. The last one was tougher, though. His private OT very gently told me she didn't know how much longer Jackson would need her. "He's doing SO well!" I know it should have been encouraging, but it was terrifying.
We didn't 'cure' him. The autism is still there. Trust me. It rears it's ugly head, I think, sometimes just to make sure we don't get too comfortable with progress. Jackson is still not as strong as he should be at his age. He still has trouble with fine motor dexterity, especially with heavy resistance. His social skills are still not where they should be, and he STILL has trouble with all the sensory issues that go with toileting. What do you mean, you don't know how much longer he's gonna need you? He is still delayed. He is still struggling. He's still autistic. Autistic children need therapy.
But, this is his life. At some point, he has to take responsibility for his own growth, and in so many ways he has. He's learning and working so hard, just like always. He makes enormous strides every day, and blows me away at how adaptable he has become. If you had seen him the day of his diagnosis and I had told you that he would be growing out of therapy in 2nd grade, you wouldn't have believed me.
It took about a year for me to truly see how far he has come, and I'm once again reminding myself, this process isn't about curing him. All we've gone through until now, all the doctor visits and psych evals, all the therapy, the deeming waiver battles, the IEP's and special classrooms, the medications and special diets, all this was not done to cure him but to equip him to live a happy, fulfilling life.
The struggle isn't over. He will have many more battles to face, but with each day that passes, his strength to fight these battles on his own increases.
We took the summer off OT to see how he would do, and we met with his OT early this week to assess where he was after taking such a long break. We both agreed he no longer needed regular OT appointments. This time, I didn't feel blinded by the light as we stepped out of the tunnel. This time I was encouraged and excited about the new leg of our journey.
Without regular OT, I couldn't justify Medicaid for him (Medicaid doesn't cover music therapy which he will continue for a while). So, I'm laying down this fight, one I've fought for a very long time, and tonight, when I would normally be up worrying if I had jumped through those hoops just right, I'm enjoying this small window of peace before the next battle.
Looking forward to sweet sleep and a brand new day.
