He had a lovely personality, he flirted with cute waitresses and little old ladies. People stopped us in the mall to tell us how gorgeous our baby was. People wanted to hold him. Medical complications aside, we felt so...blessed. And then one day it crashed down. I remember very clearly the time frame because it started the week before my Aunt Cathy passed away. Asher and Ethan both were so sick, for a week straight they had super high fevers above 104. Antibiotics, breathing treatments...long sleepless nights and at least a handful of visits to the pedi and one or two to the ER. Naturally he was quieter, he was sick. Sometime after my aunt's funeral, I noticed he wasn't himself anymore. He had gotten better but was still quiet. Eerily quiet. And then it hit me, he was too quiet.
I remember sneaking up behind him and screaming his name as loud as I could. The panic when he didn't startle, didn't look up, didn't even notice me. I thought, we thought, everyone though that he had lost his hearing, that somehow in the illness Asher had gone deaf. And I remember being like "okay I can do this, I can understand this" and going ahead with the appts. I was worried but not panicked. I could sign, I could teach him, we could do this. But then brain stem stimulation showed that his hearing was perfect. This event started the year of our journey toward his autism diagnosis. Set back one, loss of communication. Set back two, loss of a happy baby. Set back three, loss of all social communication.
That was the beginning. In those early lost days I would leave playdates with out children and ugly cry the whole way home. It was hard to see a light at the end of our dark lonely tunnel. It was so hard not to despair. What had happened to my happy, social, noisy little guy? How does that happen over night, like a snap of the fingers? Switch of a light? Poof!
He has come so far since then. It is so hard to read his testing from last spring and even reconcile that he is the same little boy. It has been forever since I left a playdate without a smile on my face, left feeling despair. It has been so long. There have been little set backs, but we've handled them in stride. You learn to do that as an autism Mama. But we have been getting used to the upswing, because it feels so good to be on the end of things.
But then a couple things have happened. I got pregnant and life has been a struggle. I've been sick and not able to pick him up, play the way I used to, spend long periods of time reinforcing therapies. His classroom teacher left for a new position, we had to change his speech therapist because we could no longer make the hour plus drive. A couple beloved friends moved onto kindergarten. And because I'm not super mobile he hasn't see some of his important people as often as he used to. We saw the behaviors, but we understood them and told ourselves "Don't worry kids regress, kids like Asher regress"
But then it happened. We went on a nightmare playdate and I didn't cry on the way home, but almost. He was yelled at in public by a crazy dad who called him an "f'n brat, a little nightmare". Once again people started to give us that look like "Why do you bring him in public?" I've dealt with it all, I haven't cried. I even laughed at the crazy dad.
But then we went to a birthday party comprised of kids from two different special ed classrooms. Bar one or two, all the children there were special in some manner. Many of them carried the same DX as Asher. Yet my kid was the one who stuck out, the different one, the worst one there. We ended up leaving the party before a lot of the kids, he was over stimulated, friend, burnt out. And for the first time in a very long time I cried leaving a party or playdate. I cried the whole way home.
So today I prepped myself for Asher's parent teacher conference. I had been told ahead of time that it would just be the teacher and I, informal to discuss progress. My heart sank when I walked into the room and saw the whole team, including the autism specialist. Well crap. Really just "fuck" Sorry but sometimes there aren't better words. "fuck"
This summer I was so excited because the school had this awesome plan to ease Asher out of his sub sep room, move him into a typical classroom, with typical peers. We had this awesome goal for him and no one said he couldn't do it. The light in the tunnel was so bright. And I really wanted it for him. I really really did. When I went to bed last night, I thought "well they may say he has had setbacks" But I didn't expect them to change the plan.
It is funny, even though I sat there and I listened to all the reasons why the plan is no longer right, all the things that still needed to be worked on, everything that normally would have killed me to hear, I could still see the light at the end of the tunnel. It may be flickering and a little bit dimmer, but I think maybe I've allowed myself to grow and no longer to set backs as set backs and maybe just paths to a different turn in the road.
So I guess, even though it is hard to feel thrilled and happy, I am thankful that even in dissapointment, set backs, and deviations from a very much wanted goal, we can still see Asher's light burning brightly. We still see him moving forward. And that is something to be grateful for. It wasn't too long ago really that we sat staring at a baby that was completely silent and later a toddler who was so clearly different than what he should be. And even through set backs, we aren't there. He is himself, just Asher, and we'll take the set backs with the gains. We'll roll with it. And be grateful that we can still see the end goal. It is still there.
