Every Sunday, we take Cole to Sunday School to socialize with his peers and to learn about our faith. Every Sunday, I sit with Cole while the majority of other parents drop off their children, and I get to help him navigate through playtime, circle time, the kiddo sermon and crafts. Nearly every week, I leave on the brink of tears.
Seeing my son in such close proximity to his normally-progressing peers is more than I can handle some weeks. As they grasp their scissors and cut out their art projects, he throws his scissors and pouts because he doesn’t have the fine motor skills to use them, and it frustrates him – and right now, he doesn’t care to work on those skills. As they sit quietly for circle time, he sprawls on the floor, and has a meltdown when I ask him to sit up straight. As the other children talk about the bible lesson at hand, and what they did over Christmas break, Cole sits silently or buries his head bashfully in my chest. As they talk to one another, he quotes movies. None of these behaviors are new. I guess I always thought he’d grow out of them. Now I know that’s not the case.
The movie quotes (echolalia) are something that I find charming most of the time, because we went for so long with very little to no speech, but lately I lie awake at night and wonder what it would sound like to hear him carry on a real meaningful conversation with me – not one laced with lines from TV shows and books. Even conversations that are seemingly normal to outsiders, I know are linked to some show or book he has memorized. Without a doubt, I am thankful he makes an effort at socializing, even if it is scripted. I know there are other moms on the spectrum that don’t get the tenderness I get, and some that never hear their child speak, and I remember how lucky I truly am while he quotes Mickey’s Christmas Carol to me over breakfast as if saying, “Whose lonely grave is this?!” is appropriate breakfast table talk.
As we leave Sunday school, I am overwhelmed by how much he has to learn and how much I must be failing him. I am so focused on his sensory needs and deficits that I haven’t even begun Kindergarten preparations, which you typically start at age 2.
Every day, I keep a journal making sure he gets sensory input 8 different times (total) in proprioceptive, vestibular, tactile and visual/auditory. I do tongue exercises with him to help with a weakness that’s affecting his speech. He gets OT and language at school. He gets OT and language privately. He just finished 3 1/2 months of listening therapy. He still gets brushed 4-6 times daily. We use a picture schedule with him to help with transitions (well, most days we do). He goes to “Little Gym” once a week for social and sensory. He is on a waiting list for ABA therapy, and that process should start in the next month. He starts a social skills play group in February.
The time I would have spent on his brother at this age to focus on Kindergarten readiness is gone before we start the day. I wonder aloud “When and how am I supposed to get him ready for Kindergarten?!”
Meanwhile, it seems that I have to fill out new forms, gather documents, fight the insurance company and research treatments every day, in addition to the full time employment and part time freelance work I have to do to keep up with all of this.
I am losing sleep obsessing over what more we can do for him. We were told he had a window – a formative window – at diagnosis, where he needed to get as much treatment as possible before 4 years of age, and we have gone full boar to get him what he needs. He has benefitted tremendously, coming out of his shell and is talking more (if mostly in scripts) and laughing more. He is less anxious about strangers, situations, changes and textures than he once was. He seems happier, more secure in himself. I thank God that all this effort is doing some good.
All of this is wonderful, incredible, amazing… but the flipside is fulltime exhaustion on my part; some degree of disconnect from my oldest son (at least perceived on my part) because I only have so much energy to focus; bitterness toward my spouse when he doesn’t know all the autism buzz words, or doesn’t log Cole’s sensory inputs; guilt when I sleep, guilt when I don’t… I can’t seem to get through a day without 5-10 emails dealing with his treatment, and 3-5 phone calls. I look at pictures of generic children in our stock photo database at work and wonder if they’re autistic too - it’s statistically possible, you know…
I have literally put the weight of the world upon my shoulders and I don’t see any logical way to relieve the pressure. In my mind, Cole’s future happiness, his chance at normal school, possibilities of friendship, marriage and children, all weigh on what I do now. My husband says to take a personal day from work to sleep, but all I can imagine is what little good that would do when I really need a week to sleep… a month on an island.
So, right now, I am “Down in the Valley,” as the song says, and when it comes on my iPod in the car driving home from church, I start to sing the “Oooh, ooooh, oooh” refrain and tears sting my cheeks – a more and more common occurence, these days. Some days are better than others, and I just need to get through this year and give him all that he needs.