I’m beginning to sort them out, these experts newly arrived in my life.
First off, I simply don’t have time to acquire the expertise I need right now, so I need the experts; but since I don’t have the sufficient knowledge/experience myself to be an expert I have no objectively valid way of determining the degree to which I should place my faith in the pronouncements of these experts. So I have some trust issues, basically.
Secondly, there are so many of them, these experts. It’s a struggle some mornings to remember the names of the expert(s) I’ll be talking with that day. And it’s been a struggle to figure out exactly how one expert’s expertise differs from or complements the expertise of another. Differentiation issues here.
Finally, figuring out how to share the experts has been an unexpected challenge; I’ve been the one driving all the appointments, having the bulk of the conversations, collating suggestions, implementing (or attempting to implement) recommendations, working with everyone (husband, extended family, school, therapists) to keep up with developments and to all be on the same page with strategies. My son, whose appointments these really are, has ended up becoming familiar with the toy boxes of these experts while I seem to talk without end, going through these initial meetings repeating the same stories and concerns to one specialist and then another, numbing myself with these recitations and boring my child to frustration. “Stop talking, Mummy.” And when my husband comes along to these sessions I find myself dominating the conversations in ways I’d rather I didn’t, but it’s me who is synthesising and synchronising all these threads of therapy and education – I’m the one with closest thing to a global perspective on our son’s issues…. Yes. There are some issues of ownership – how do I balance being responsible with getting out of the way?
I’m finding it easy to trust the experts who understand that my primary experience right now is one of being overwhelmed. Overwhelmed in terms of time, overwhelmed in terms of responsibility and, most importantly, emotionally overwhelmed. Experts who understand where I’m at make me feel as if I can trust their judgment when it comes to my son as well, and while I know these experts have specific roles to play in my son’s development, for now I’m appreciating the role they are playing in helping me transition away from the crisis mode I feel I’ve been in for more than two years now.
This transition from a sense of chaos and crisis to one of understanding and action just couldn’t have been possible without the diagnosis, and I’m also struggling to reconcile myself with the failure of previous experts – GPs who said “he always seems perfectly fine to me” when I asked for advice for referrals to specialists who could help tease out my son’s particular matrix of issues, child psychologists who said “I’m not prepared to give a diagnosis at the moment” and left it at that without any recommendations regarding other experts who could help (diagnosis or no). I feel vastly let down by these gatekeepers.
It took just on a year to work through the maze of expertise to get the help my son needs, and in autism spectrum terms delaying intervention for a year is a disaster. At the same time as I experience relief and excitement at seeing an expert connect with my son and help him find his way through the world I’m experiencing extreme regret that I couldn’t have accessed this assistance from the first moment my son began abandoning spoken language nearly two years ago. Why isn’t screening for autism spectrum issues at the forefront of doctor’s minds? Why didn’t the disappearance of speech trigger stronger responses from these experts?
My next job is going to be helping the experts work as a team, specifically in regard to advising the education experts (aka ‘teachers’) at my son’s school who are new to working with a child on the spectrum. And after that? Blocking in some time with a massage expert sounds like a good plan to me…
This is a fabulous post. You have captured the process and stuck it to the paper beautifully. I have been there – and though you may be feeling brittle and stressed right now – I can just tell you are on a path that will put you at the helm of your child’s development.
You have the savvy to do this – that is plainly evident… but yes, right now you are reliant on professionals to help guide you. Please trust your instincts… as parents you know your child better than anyone.
Your child needs his relationship with you as his mom, although you will take on many roles in the coming years. Your son needs you to take care of yourself and your other relationships.
The Psychologist who assessed our son and was part of the multi-disciplinary team that diagnosed him gave me some very helpful advice. He said, “You can be dealing with attentional issues, ADHD, sensory issues, OT/PT, Speech and language, and behavioural challenges, and fool yourself into thinking you are working on remediating the autism. These things co-exist in your child – and they are important to address- but that is not the autism. Autism is a social disability – and developing a relationship with your child and teaching your child to make his way in the social world is the key to his success.”
I found these books helpful when we were starting out:
Sohn and Grayson : “Parenting Your Asperger Child”
Laura Berk : “Awakening Children’s Minds”
Steven E. Gutstein : “Autism Aspergers: Solving the Relationship Puzzle–A New Developmental Program that Opens the Door to Lifelong Social and Emotional”
Please feel free to dm me on twitter if you want to chat. And here is a post that relates: http://30daysofautism.wordpress.com/2011/06/18/diagnosis-autism-part-1/
Leah, thank you so, so much for your words of encouragement (and for the suggestions regarding helpful books!).
I’m certainly still in a stage where I can’t imagine not feeling stressed – it’s been so long now that I’ve been beyond frazzled, it really is hard to think I’ll ever again have a sense of calm again. A year from now it will be very interesting to look back….
Thanks again, and especially for those hugs – I can use every single hug I can get at the moment!