I watch you struggle for breath and wish I could breathe for you.
I watch you struggle for words and wish I could speak for you.
I watch you struggle to be understood and wish I could help the world understand.
I watch you struggle to learn and I am proud of how hard you work though I wish I could do more.
I watch you play and wish I could enter your world and see from your point of view.
I watch you charm people around you with your dazzling smile and wish I could bottle your essence, your goodness.
I watch you injure yourself in fits of pain and rage and wish I could soothe away the demons.
I watch you fight to sleep and wish I could wrap myself around you to help you settle.
I feel your hands frantically clutching at my shirt sleeve when I try to move away, even just to get more comfortable, and I wish I could make you understand that I won’t leave you alone.
I watch your anxious eyes searching my face as if trying to memorize it and my heart clenches in my chest.
I cradle you in my arms and see dark circles of exhaustion writ large around your eyes and wish I could erase them.
I pour my heart into my arms and hope you can feel my love enfold you as you settle against me.
I watch you drift to sleep and pray it brings you ease and rest.
Everything about our autumn has been full of both promise and struggle. Lately, it feels like the struggle has been gaining ground. Still, we try hard to hold on to the promise and to remember that where we are right now doesn’t have to mean forever. But, I won’t lie, it’s getting harder.
We started the school year full of wonder and excitement —and the knowledge that the current setting/placement would not be permanent as we waited for the state autism program to conduct evaluations and to determine whether Nik meets the criteria for the educational classification of autism. The staff at school is wonderful. Loving and supportive of my boy and helping us hold on when it feels like things are going to hell in a handbasket.
Still, the struggles for my boy have been tremendous. With each passing week, the sensory assault of the large classroom, the noisy cafeteria, the challenge of being a nonverbal child in a highly verbal world— it has all been exacting a steep toll on my boy. We’re seeing a significant increase in sensory seeking behaviors and a regression to some infantile behaviors, too. Things we thought had been outgrown or overcome are rising to the fore. Eating and drinking are on the decline and health issues have taken an uptic.
The bad news is that it’s taken so long for the autism program to do their myriad assessments and evaluations. The good news is that we now know Nik qualifies for the services. We have an IEP meeting this week to discuss new goals, needs, strategies and placement.
The bad news? We know it won’t be resolved in the ninety minutes allotted for the meeting. The good news? We know that we can get things worked out. Meanwhile, we continue with our current course of private PT, OT and feeding therapy until we finalize school services.
The increase in stress has manifest itself in other ways, too. Nik’s sensory seeking behaviors include a resurgence of licking his hands and putting everything in his mouth. I mean everything. This contributed to his recent upper respiratory infection which led to our annual “vacation” in the hospital. With the addition of steroids and albuterol, Nik’s already erratic sleep schedule went straight down the tubes. We’re still looking for it.
Since we came home on Tuesday, Nik’s been a mass of anxiety. His physical health has returned but the sleep issues are worse than ever; I didn’t think that was even possible. Where he once fell asleep easily, Nik now cannot go to sleep without me nearby. He used to wake every few hours but then go back to sleep. Now? If he can’t see me or hear me, hysteria reigns; even when he wants to sleep, he can’t unless I’m there.
I’m hoping and praying that a return to school and some semblance of routine will help ease some of the anxiety. Honestly, though? I’m not very confident of it. Until we get him in a different environment where his sensory and communication needs are being better met, I think this may be with us for a while.
Meanwhile, I’ve given up on sleeping much more than two to three hours a night or trying to get anything accomplished around the house as long as Nik is home. The anxiety has reached near fever pitch; I cannot leave Nik alone for even five minutes without it resulting in self-injurious behavior on his part. I have simply surrendered to it. I know he cannot help how he feels and he’s trying to communicate something to me.
All I can do right now is be there for him and let him know he is safe and loved.
The rest of the world will just have to wait.
Somewhere in the night
Somewhere in the night
I’ll shine a light for you
Somewhere in the night
I’ll be standing by
I will be here for you
In this world of strangers
Of cold, unfriendly faces
Someone you can trust
Oh there’s someone you can trust
I will be your shelter
I’ll give you my shoulder
Just reach out for my love
Reach out for my love
Call my name and my heart will hear you
I will be there, there’s nothing to fear
(I Will Be Here For You ~ Michael W. Smith / Diane Warren)