Rowan Jetté Knox

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Anything


On Monday night, Gutsy shrieked, begged and protested for a full 75 minutes over having his hair washed. After a long weekend of chocolates, day trips, rich meals and late bedtimes, he was completely out of sorts. He absolutely lost it at the thought of his hair being wet. 

This came on the heels of a 20 minute freakout in the van on the way home from the in-laws' on Saturday night because he spilled apple juice on his pyjamas. We had to pull over, take his brothers out of the van, and get him calm enough to change his clothes and switch seats. 

Yesterday, the power was knocked out at Gutsy's school during a wind storm. The stress of the hallways being dark was so heavy that he came home and burst into tears because our power was out as well and he couldn't watch t.v. Schedule off, things not as they should: panic.

Welcome to life with a child who likely has a full-blown sensory processing disorder

You may recall that a few months ago, Gutsy, my mom and I braved one hell of a storm to go see a Montreal psychologist who specializes in hearing impaired kids. Not too long ago, we received her final report. It was simultaneously a huge relief and a rusty knife to the heart. 

The Reader's Digest version of her findings:

1. Gutsy is quite bright, with many academic testing scores in the above-average range.
2. He is very typical - or average - in many respects, which is fantastic.
3. When processing new information, the middle gremlin scored "borderline clinical" at 7% of the average, which likely indicates a learning disability. Coupled with an extreme sense of perfectionism, this is a perfect storm for anxiety surrounding school (which, if you've been following my blog like a good little sheep, you'll know is a recurrent theme.)
4. Gutsy's more difficult behaviours are almost exclusively reserved for home, which is great for the teacher and bad for us. It either means he has more triggers at home, or that he feels more comfortable "sharing" them here.
5. Gutsy's rigidity, defiance, emotional explosions and panic attacks at home scored in the "clinical" range, meaning they are quite serious and atypical for his age.
6. As it stands, he could be mildly on the autism spectrum, he could have generalized anxiety, or he could have sensory issues - or a combination of any of these. We all feel that a sensory processing disorder is most likely, so we will have him seen by an occupational therapist as a first measure. Sensory problems are more common in children who deaf or hard-of-hearing, so this would fit.
7. The psychologist felt that there are far more questions than answers right now. She recommends further testing in a multitude of areas.
8. I'm whiny and emotional. so I felt I should add in an extra number on the list to complain about it.

The big brown envelope with all these details sat on my desk untouched for far too long. We had already spoken at length to the psychologist over the phone and had asked a great many questions, but for some reason I couldn't open the report when it came in the mail. It was a crafty little game I played with myself; I felt that if I opened the report, it would become real all of a sudden, And that nice little bubble of "if we don't name it, it doesn't exist, so let's all skip through the field and pick some fucking flowers" could stay intact. I would pick up the stupid envelope every so often. Then, losing my resolve, I'd place it back on my desk, unopened. It took me about three days to finally get up enough nerve to read it.

Then, the past few days happened, with so much sensory stuff going on that it just tore up his dad and I. This is affecting our entire family. Not only is Gutsy having a challenging time as of late, but his brothers are having to deal with less attention, more chaos and a life of walking on egg shells around their brother. It takes an emotional toll on all of us. Geekster and I get so stressed out that we can't even say a word to each other for a good while after one of Gutsy's meltdowns for risk of snapping at each other. At other times, we glance at each other just long enough to see the sadness in each others' eyes, then look away. What is there to say? Nothing we tell each other seems to make it any better. 

Needless to say, it hasn't been a great week.

And yet we all love each other so much. We all love Gutsy so much. We're trying hard to make this a peaceful, happy and safe place for our boys to grow up. Some days are better than others. I hope to see far more better days in the future.

Watching Gutsy in that kind of overwhelmed, panicked state is one of the most helpless, gut-wrenching things I have ever had to do - and if you know me and you know my life story, then you also know that this statement speaks volumes. It's tortuous to see him locked in his own head, unable to escape the place where things are too bright, too loud, too wet, too dry, too itchy, too tight. What happened to that sweet little boy that got us to this heartbreaking place? Why can't I help him? What am I doing wrong? It tugs on a mother's heartstrings like little else can.

I'm sad. Sad and worried and angry. I'm having one of those "this isn't what I signed up for" kind of weeks. And I know that's ridiculous, because as parents we sign up for whatever gets thrown at us. Nobody is guaranteed a smooth ride. Parenting is always bumpy - there are just some bumps that are bigger than others, that's all. It's my job to deal with that. I'm trying, believe me. It's just been more of a challenge to keep my emotions in check lately.

If one good thing has come out of the last few days, it's the reminder that my husband can be absolutely incredible. When Gutsy was in his bad place for those 75 minutes on Monday, Geekster took the helm and worked him through it. He sat in that loud, echo-filled bathroom, being repeatedly screamed at not two feet away by a distraught and overwhelmed child with quite possibly the loudest, most ear-piercing yell ever - and miraculously got him through that hair wash. He is an amazing father. I don't know many human beings who could have done that, and it made me fall in love with him more deeply than I already was. He is a hero to me, and Gutsy and his brothers are so lucky to have him. I am extremely fortunate to have had a family with someone who is so dedicated to his kids. I was reminded of that this week.

What will parents do in the name of their children? Absolutely anything. Anything and everything, and all the rest in between. We will never stop trying, helping, supporting, learning, empathizing, loving. We will never stop, Gutsy, because you mean the world to us. And you are perfectly you, just as you are.  

I guess I'm done for now. This isn't one of my usual cheery posts, and I apologize for that. But sometimes I need this space to vent, to cry, to just be. It helps me to write, being a writer and all. I hope that it helps somebody else who stumbles upon it, too. If that happens, then that will be another good thing to come out of this otherwise sad week.