It’s no secret that when life gets hard, I get quiet. It’s how you know something is really wrong. Since getting Ryan’s autism diagnosis on September 9, things have been absolutely insane.
Our au pair, who had been with our family for ten days at the time, quit because she “wasn’t comfortable taking care of a child with special needs”. Ryan’s diagnosis was an excuse, she claimed she didn’t know he was special needs. Yet I have several emails from before we matched, the last one having been sent on August 11, explaining that Ryan was having issues and that it was likely that he would be diagnosed with a sensory processing disorder or PDD-NOS (which was recently just lumped into autism spectrum disorder). Literally two hours after I got home from the developmental pediatrician she sat crying and making a fuss in our kitchen. I sat there watching this girl cry, and all I could think was “I can’t believe I am fucking dealing with this. Today.”
We were supposed to host her in our home for 16 days while she tried to find a new host family. I made it three before I couldn’t stomach the sight of her and asked the agency to find her alternate accommodations. For the ten days she was here I ran around trying to make her life easier and help her settle in, when it was really her who was supposed to be here making my life easier. Regardless, I am happy she’s gone. I was even happier to hear that her ego was so bruised by me removing her from our home that she flew back to Spain. Her actions both in our home and after being removed from it caused her to be taken out of the au pair program, sparing another host family from having to deal with her self-entitled nonsense.
So while I have been trying to process my son’s diagnosis I was dealing with her issues and trying to keep my family afloat without the childcare that we were depending upon for so long. While working, while increasing Ryan’s service load, while trying to make decisions about what comes next for him, while trying to find replacement childcare. And so September was the month that I nearly drowned in my own life.
Ryan’s diagnosis is kind of a trifecta of perfect and terrible timing. He qualified for services in August, got a diagnosis a month later thus increasing his service level, and we have to qualify him to transition to the CPSE (Committee on Preschool Education) because he will be three in January. It is terrible because each of those things alone would be overwhelming in both information and things that need to be taken care of, together they are almost impossible. Almost.
It is perfect because without the diagnosis we may have had to fight to keep services with his transition to the CPSE, and he would have never seen the service increase he’s getting now, which will only help him.
With his diagnosis he’s now getting approximately 11-15 hours of home-based service per week. We can see a difference in him already from the month of therapy he has completed, and that was just 4.5 hours per week, so I am hopeful.
I spent the better part of two weeks touring every special needs school available to us, observing classrooms, interviewing staff. It was too much. To see kids with the deck so stacked against them at such a young age. It was just too much. I keep coming right to the edge of falling apart, the tears come and I am able to pull it back again.
I can’t seem to make a decision. Keep him at his mainstream school or put him in a special needs school. Separate the twins or keep them together. Keep him where he is until June and transition in September or transition when he’s eligible in January. Send him to this school or send him to that school. There are so many decisions and all of them feel like they weigh a thousand pounds.
I am not making these decisions alone, but with all that has transpired with Joe and I up until now this process with Ry has been that much harder. Going through this all without feeling like you have a partner to go through it with. I feel like I’ve lost everything I thought my life would be slowly, then all at once.
And that’s the thing about autism. You are mourning a life you’ve lost. When you stop and you take a breath and you look up from the paperwork and the decisions and the choices and you try to breathe it is almost impossible, because where you are is a million miles from where you wanted to be. My child is here, he is healthy, but his life will be different — for now, hopefully just for now. And so my life will be different too. Even though I am mourning the life I had planned, no one died. So there’s no one lining up at the door to help out or watch your kids so you can take care of yourself. No one organizing a meal calendar or showing up with dinner. It’s life as usual with literally everything changing.
We saw the developmental pediatrician again yesterday for a Q&A since Joe missed the appointment the day Ryan was diagnosed. The nurse there who handled our meeting promised us that we’re at the bottom and the only way to go is up. I hope she’s right, for all of our sakes.
