A day in the life

We have been busy. This is nothing new for us. Having a child like Asher dictates that we spend our days going to and from appts, therapies, school groups...etc... Just how it is. For the most part though, life has a predictable pattern and we sort of float through our routine because it is our normal. When our life went from normal to crazy, I used to think "There is no way I can do this" but it has just become what we do at this point. So we sail through our busy weeks and don't really stop to reflect on just how much we are taxing ourselves, until a wrench gets thrown into the mix.

In this case, I'm referring to two things, unexpected surgery and a massive snow storm. Our routine...squashed. Now Asher isn't a spectrum kid that relies on a strict routine, no its me that needs the routine, the map to my organized life, otherwise I have too much time to think and that leads me down a path I don't want to go. I'd rather just enjoy the unexpected tid bits of sunshine and not think about the looming rain clouds...so to speak.

But we do have a lot looming, and the break in our schedule gave me a lot of time to think and reflect. First off, school is coming....for both of us. I have gone back to work, which means Asher and I aren't spending every single waking second together. Sitting in on hours and hours of therapy is exhausting. It is nice to get out there, catch up with co-workers and people I've missed, have adult conversations, use my brain, but I do miss Asher. For all his difficulties, he really does light up my life, and I miss his warmth when we're not together.

Asher starts school soon too, in less than two months. Right now we're talking to the public school system, setting up a health plan for Asher, and starting the evaluation process for the Integrated Preschool. It is so strange that my baby is actually old enough to go to school. When did that happen? Hmm. But I do have to admit, that when I look at him now, he is looking like a child and not like a baby, not even really like a toddler. He looks like a young child. Wasn't it just yesterday and forever ago at the same time that he was born? I mush have blinked at the wrong moment and missed something huge. Either that or being sleep deprived for three straight years has lead to memory loss. Either way, I wish I could go back to when Asher was six months old and just cuddle him for an hour while he sweetly naps. I recognize his sweet face in his pictures, but it hard for my brain to remember how he sounded, giggled, and cuddled at that age. In that way, I wish my memories were 4D.

Anyway, the school system is being really good to us regarding Asher's allergies. I've been very worried. I haven't wanted to talk about it, but it has given me a great amount of anxiety in the month leads up to where we are. I have trust issues I guess and I just don't believe anyone will take as good a care of Asher as I do and as my sister does. Most parents worry about violence and things like what happened at Sandy Hook. Those are real weapons...more tangible...they are a symbol of evil and harm and generate fear. But for us, what nourishes someone else' kid, is a weapon against ours. It is a scary scary place, Asher's world is. But we don't want to teach him to live in fear, that is no way to live. We don't want to program him to be afraid. This is difficult to do when you are living in fear yourself.

So Asher starts preschool in April. They have made great accomodations for him to be there. Peanut free school, dairy free classroom, wheat free table.....yet I'm still scared. Am I nuts? The snarky part of me also wonders how many enemies we've already made amongst the other parents who will have to make huge changes to their children's school foods just because my kid is coming to school. I know we won't be popular. It is not that I don't appreciate how difficult it will be for people to make those changes, its that I'm selfish and I don't care. I guess maybe because changing Asher's diet so that someone else could be safe, instead of changing our whole life just to keep him alive, seems like the better side of the fence to be sitting on. An inconvenience to be sure, but no fear crawling up your spine. I think I could do that for someone else' kid. But people love their peanut butter, so who knows how many people will resent our presence. Oh well.

Asher had his three month follow up at LADDERS a few days ago. This is always something that causes me to lose sleep. I don't know why and I guess it is foolish, I mean what can they possibly say to us at this point that is worse than the blows they have already had to throw our way? I mean its not like his Autism was in remission and we have to worry about it coming back. It is there. But I always get anxious about it anyway. Having Asher has made me into an anxious person. But our LADDERS appt went well. If anything, they gushed over how much progress he has made. In my brain I know he has made huge gains, but I'm with him everyday, so they don't seem as "woah" to me as they do to people who only see him every few months. So for an hour and a half I listened to Asher's neuro praise our parenting (Which is only funny because most of Asher's progress is a result of good therapy and Asher's own hard work) but it is nice to be told you're a good parent anyway. It is a nice change from the judgemental stares we get everywhere else, so I'll take it while I'm getting it. She also told me that Asher is looking a lot less "Autistic" in a way that non professionals would recognize. Meaning to people who aren't in the field, he could at times appear quite typical. This is meant to be good news. Only depending on how you look at it, half full or half empty...in this case half empty, because that also means that at times, he is still clearly impaired.

Our neuro also raised a question about Asher's jargoning...which is nonsensical made up "autism" speak. It sounds a little like a sentence comprised of "tigga ligga dooga right mama?" Is is a marker for Autism that is used for diagnosis. With Asher is was never very clear to me and I questioned early on if Asher was having difficulty sorting his ideas and planning how multisyllabic words and long sentences would come out of his mouth...in short oral motor planning. His SLP has always maintained that Asher has all his sounds and none of the markers for a disorder called Apraxia or maybe in Asher case Dyspraxia....I know a lot about language disorders, but the finite difference between the two of those still confuses me a bit. But anyway, our neuro said for the first time that what she thought was "jargoning" in the past is starting to look more speech disorder related. Is this good or bad news? I don't know. I really don't. Who is to say one thing is better than the other really? It would just lead to changes in therapy and give me something else to worry about...please bring on the Prozac! (Which aside from the horrid headaches, is amazing stuff and I think everyone should have some) So anyway, add that query to the list of other things we have to question day in and day out and that is where life is at.

A week ago I had a conversation with Asher's SLP about how Awesome Asher's play skills and play with other kids has gotten. That same afternoon I took Asher to the playspace in the mall to play while Phill was in surgery. I shouldn't have been so quick to brag on his playskills however. Asher has been enjoying a show called Shaun the Sheep. If you haven't seen it, the animals on the show have personification, but they still speak animal speak, so they basically tell the story through bahhhing and mooing and oinking. Asher loves it. HOWEVER, not all children watch Shaun the Sheep, so when my child is chasing them around the playspace screaming "Bahhhhhh! Bahhhhhhhh! MEEEEEEEH!" the other children run screaming, look uncomfortable and go to sit on their parent's laps. And then I get the looks from the other parents that say "What the fuck is wrong with your kid and why do you take him in public?" Sigh, you don't have to hear the words to interpret the glares. So no more Shaun the Sheep for a while, I guess. I do have to chuckle and admit that sometimes at the expense of other people, I do take out my "fed up of being judged" on the glaring helicopter parents who have deemed my child the "strange boy" and say "Oh I'm so sorry, you see he has Autism and just wants a friend to play with, he is lonely. Lol. Which is true, but it makes them look uncomfortable and a smidge ashamed of themselves. It at least evens the score to judgemental mom 1 and Asher's Mom 1. I'll take a tie sometimes. I'm okay with that. As long as everyday is not a losing day.

I know that most of my posts are shorter and organized with some sort of message or theme, but my routine got messed up, my brain is unorganized, and what you see is what you get. A day in the life of the Cole family..appts, meetings, judgmental glares, and more questions. Cheers and much love from us to you.