When I woke up this morning to the sound of my daughters running feet, I had a feeling of dread. I knew I was going to have to tackle a really tough job this morning. Cleaning Jenna's ears. Sounds silly right. Why should I be worried about doing such a simple thing?
Lets go back a couple of years to Jenna's first hearing test at the +DECH. She was four and we were concerned that her delay in speech may have been affected by her hearing. Like diligent parents we brought her into an area that was ill equipped for a child with an +Autism Spectrum Disorder. Not surprisingly Jenna had a bad reaction at first. She is sensitive about anything to do with her head, and especially her ears. Luckily we had our support staff with us, in the form of an AST and supervisor from Autism Intervention NB, who helped with explaining the special needs that Jenna has. Still the procedures were a nightmare. There is no worse feeling than having to hold on to your child, who is in a panic over a procedure that she cannot understand and we had no way of explaining to her. Her strength is astounding and her tears are powerful, my wife was unable to help at all and it took the rest of us, that is four adults, to restrain Jenna so the procedure could take place.
I could also talk about the few times Jenna has been sick enough to need liquid medication. Sounds simple right. Put 10 CC's of medicine in the handy dandy syringe and squirt it into her mouth. It tastes like banana, all kids love banana. We soon found out Jenna hated "Ba ana" as she screamed it over and over. Kicking, flailing, punching, pinching, squirming until we were spent and she was free. Thank goodness I was resourceful enough to eventually reach out to the pharmacist who suggested, brilliantly, that I get berry flavor and put it in some apple/strawberry sauce.
These kinds of challenges are the toughest for me to talk about with friends and family. I am starting to realize though that these are the stories I need to be best at conveying. These and many other examples bring to light the need, in my opinion, for everyone to see the challenges parents of children with Autism face every day. More education on how serious some cases of the disorder are. More media coverage of the tougher side of Autism. More support at municipal, provincial and federal government levels to prepare for and help the waves of adults with Autism who are in our villages, cities and towns right now.
Especially we need solid, science/fact based research into how to best treat and care for children and adults with Autism of all types but especially for those at the more severe end of the spectrum. Studies in these cases is difficult for sure, for some of the reasons I have pointed out, but so very necessary if we are to really help these kids. It is very easy for researchers to use the highest functioning of those affected because they can retrieve data more smoothly but it defeats the purpose when these studies are then applied to a huge spectrum of disorder with what could be catastrophic results.
You will be happy to know that I got Jenna's ears cleaned. The process was easier than it has been in the past. I knew what to have ready to distract, I knew the signs to watch for in case she became anxious. Still though, next time it may not be the same. The dread will be there again, all from the simplest things.
No comments:
Post a Comment