“I can’t count the number of books, articles, websites, studies, etc. I have devoured on the subject of motor speech disorders, autism spectrum disorders, treatment methods, and anything remotely associated with the subject.” ~Lindsey
I am not an SLP, an OT, or a Ph.D. I am not a medical professional of any kind. I have never received any medical training or education. What I am is Mom to Quinn and Emma, and I wear this title with more pride than any I could possibly have received through years of intense training. My kids are quite simply my greatest accomplishment, and I live now to see them achieve rather than to reach any further accomplishments of my own. Funny how perspective on life changes isn’t it?
I know my kids more intimately than anyone else in my life. I can tell what’s going on with them from an expression on their face, a body position, or a catch in their voices. I am in tune with them due to my emotional connection in a way that no clinical training or education could possibly duplicate. I am without a doubt, an expert on my children…. Therefore, going forward, may I please be referred to by title as Lindsay Wheaton, Ph.D. (MOM)? Perhaps the people I have dealt with in the past who were trying to help my son Quinn would have taken me more seriously when I provided my input. After all… I am the expert in the field of “Quinn studies (with a double major in Emma studies!)” right?
To give you a taste of what I’m talking about, I’ve actually had professionals say straight out to me the following:
“Humor me…. He needs it”
This applied to a visual schedule as the individual felt since he was placed on the autism spectrum that he had difficulty with a change to a daily routine. When I explained that I wanted to focus on another area of difficulty other than this because not only did he not have a problem with a change in routine, but in fact craved a shake up of things as he bored easily, I got this response.
“Apraxia? No… his lack of speech is just a characteristic of his autism”
This was offensive and contrary to everything I had learned on so many levels that I don’t have room to comment fully so won’t bother. however, comment to the individual who said it, alas, was not taken seriously.
“he could suffer from Anxiety Disorder or Obsessive Compulsive Disorder”
Brought on by Quinn constantly picking up a car and saying “caaa” when asked a question. I knew very well that Quinn couldn’t verbally answer due to the motor speech difficulty, and so was trying to communicate socially with the individual by delivering the only word he had that was intelligible at the time. He still does this to me…. If I ask him a question he’s having difficulty with, he changes the subject, however, so does my husband when I ask him a question he doesn’t want to deal with. “Buying time” could very well be a genetically pre-dispositioned trait in the male side of our family…but I think not.
“Quinn has compliance issues and follows his own agenda”.
Ummm. Okay – true from your perspective, but just because he is bored with your standardized test and doesn’t want to do it anymore after he’s already sat patiently while you took his history from me for an hour and a half doesn’t mean that not following your agenda is necessarily abnormal.
Can I please have my title now?
I’ve had good and bad scenarios in the past three years where I’ve been both dismissed as a mere parent, and where I’ve been embraced for my specific knowledge. Don’t get me wrong – I’ve got a lot of wonderful things to say about a lot of professionals that have come in and out of our lives and without them, Quinn wouldn’t be the success story he is today. Perhaps this makes the well-meaning ones who dismissed me stand out more as a result.
I hope this article comes off more as a plea than a rant, as I am not attempting to disparage any of the professionals who have by way of their unquestionable expertise tried to help my son. I don’t feel anyone had any other agenda and felt they were sincere in their perspective and in no way malicious. I just want to provide everyone with another perspective or interpretation to examine: What if we all worked as a team of experts to help the kids, where parent expertise was included and not discounted?
We’ve seen teams of experts, although for the most part on an individual basis. Expert A would refer to Expert B, who would refer to….well, you get the picture right? I think our most successful and most productive assessments or therapy situations happened when we actually had present at the same time, more than one expert putting their heads together and working as a team. The assessment was attended by a multidisciplinary team made up of representatives from Speech Language Pathology, Occupational Therapy, Developmental Psychology, and of course, my husband and I. Our private speech therapy consisted of a team effort as well, which was extremely successful. Either my husband or I attended therapy sessions with Quinn, and we took what we learned and applied it to every day as a form of home therapy. We should be accountable as experts as well – we need to be involved in the work and can’t just dump our kids on the professionals and say “fix them!” With that title, we must accept the responsibility!
It’s amazing to me that we as parents know so much on subjects we may never have taken interest in prior to finding out they impacted our child. I can’t count the number of books, articles, websites, studies, etc. I have devoured on the subject of motor speech disorders, autism spectrum disorders, treatment methods, and anything remotely associated with the subject. I’ve quizzed the experts to clarify issues I didn’t understand. I’m passionate about pursuing the knowledge because it directly impacts my son and his achievements – my whole life purpose after all! This is obviously more than just a passing hobby for our family. Can we at least be considered graduate students of a self-study university on the subject?
I guess my point in all this is that we as parents value the opinion of professionals. We acknowledge their training, their educational experience, their clinical expertise. We need them and trust them and know they sincerely want to help and have the unquestionable expertise to do so. Is it so crazy to ask that they do the same for us in the field of our expertise? Is it insane to welcome us aboard as part of the team, and be treated as such and no less? We want to play and could very well be the secret weapon to success – after all, if our goal is the same, which it is, combining forces would simply make us stronger. Let’s up our odds for the kids emerging as the winners shall
by Lindsay Chase Wheaton Lindsay was a co-founder of Canada’s Apraxia Support Group, ECHO, the Expressive Communication Help Organization