Since I have been writing for technical purposes I feel it appropriate to just let my self write for me tonight. Sometimes, its therapeutic to set down the unspoken rules of writing when you become somewhat established in your niche. So tonight I will just lay all my thoughts out there and see what answers I can find, if any are to be found that is.
Today, a random article passed my gaze as I scrolled the ever increasing ads that adorn my facebook newsfeed and I couldnt help but read. It was written by a woman stating in so little words that it is unacceptable for people, parents in particular, to write about their tough times in their dealings with their kids. She basically said that it was doing the child a disservice. As I read the article I almost felt convicted until it hit me. While yes, I can see where she is coming from I also know that we do the community a disservice when we do not divulge such information to the community that is not directly impacted. I think its important to divulge the whole story and not just the good parts for many reasons.
One, Its real. To say that everyday is a bed of roses is to lie. To say that we never get frustrated or have weak moments as we watch our childrens flailing bodies on the floor is a lie. To say that we never have those moments of questioning “why us?” is a lie. On the other hand however, to say that we dont revel in amazement at the things our children do is a lie. To say that we arent in some way blessed to have autism in our lives is a lie. To say that our children are not the most prized possessions is a lie.
They say that biased news isn’t really news but rather opinion is true and if we as writers and parents refuse to report both sides are we doing the community a disservice? If we only write of the good we are only telling half the story and subsequently we arent allowing the rest of the community in to help us because they do not see a need. And to do this only isolates us further.
Second, How can we connect with others in the same situations as us. Lets be honest here, many of us are home bound, not just because of behavior but because of therapies. We can’t expect anyone to understand our stories, our tears, our celebrations about our triumphs, our frustration over regressions or really any of our story if we do not tell it. Which is why, as a writer, i find it necessary to tell it all just as it is. I find the more I can tell the more others can know. And honestly, as I let others in to fell all the emotions with me my cheering section only grows with each new phase of my sons development.
Our stories are important. My sons story is important. It is vital that I not leave out a complete side of his story because that skews the truth.
Needless to say in reading this article at first i was convicted but then as I read on I became almost angry. As i read the words condescending the very truths I tell in many of my writings I felt my soul shut down and the words became mere whining in my brains reading voice. I cliked out of the article looked at my son jumping up and down and flapping at the tv and yelling out I began to laugh. I set my phone down and began to prepare for his initial OT visit which kept him home from school yet another day this week.
Battling the exhaustion from being woken up at 4:30 am by my son I took my ADHD meds and hoped for the best. I got him dressed choosing not to put a pull up on him and packed a bag of extra pants and a pull up just in case. We headed out the door and hit the road. I took that ever familiar trekk to our “autism one stop shop” (where he sees a developmental pediatrician, does speech therapy and now Occupational therapy). When we pulled up I say his ex ABA techs bright yellow car and smiled. Man we sure have made our rounds around the autism world we know people in almost every waiting room now.
Upon entering the familiar waiting room i was handed five pages of history to fill out as i laughed inside saying to myself, “yea like any of this is going to be filled out perfectly with him in tow”. Between answers I would jump up and chase him to keep him from running away and one sprint i was just one step too slow and he took the secretaries computer and knocked it over. The secretary was notably annoyed but i just laughed it off and walked away. Once again, my son was the most severe in the waiting room. (when will these therapists ever learn to send the forms ahead of time because us parents just cant do this in waiting rooms with our children? I guess ill put that in the suggestion box)
Once in the small square room void of computers (because she had been warned) Aiden layed on the floor sucking his thumb and watching the news on his ipad as the therapist and I talked. It was the same old dab routine, “we will work on toothbrushing, zipping zippers and buttons” blah blah blah same old song and dance. (not saying that in an angry way just in in an exhausted one as he has been working on the same things for years.
After our intake was done and we were securely in the truck i took a quick look at my phone and there were messages from two of our aba therapists looking to change schedules. One said she could come earlier in the day today to which I replied “YES” because that meant an early turn in for the night and after that 430 am wake up I was already counting the hours until bedtime.
Now, after all the therapy is done and the therapists are gone I sit in preparation for tomorrows therapy which is set to begin at 9 am and I cant tell you how alone I feel. Even though i know there are others on this journey with me I cant help but realize that I have not spoken to a real adult that is not a therapist in days (except for facebook and that doesn’t count). Somedays, I just want to say, “I can’t do this anymore I’m calling off therapy for the rest of the month” but then, that isn’t in the best interest of our boy that I am trying to desperately to help. And if that isn’t real then I don’t know what is.
Well, that’s where my head is at after this long day. And I’m not ashamed to tell you about it. I think its time we start being more accepting not only of those affected by autism but those caregivers who give their all to make their children all that they can be. Its a tough road. And there is nothing to be ashamed of in admitting that. There is a certain strength in the admission if you ask me.