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.

***hugs***
ReplyDeleteWhat a great mom and dad you're being. And a wonderful special kid. Every time Gutsy comes up in a story I think back to the one you told about how he took apart and put back together a computer. I still need help working my way around the desktop! He's an incredibly gifted kid--and one of his incredible gifts are you guys, standing behind him.
Oh honey, you and Geekster are phenomenal parents and I can see where it all would be completely overwhelming. {{{Hugs}}}
ReplyDeleteThen, in the midst of it all, your crazy boss txts asks for help, then says no never mind... sorry about that...
ReplyDeleteHugs to you both.
You and I are living the same life. Just know that someone else understands........
ReplyDeleteMerci, les amies.
ReplyDeleteI'm feeling a little better today. The report had been sitting with me for a few days - and not necessarily sitting well. Then the craziness of this week happened and it totally threw me. Plus I'm a PMSing nightmare case right now. The perfect storm of sad blog posts :P
@Winn, you made me teary with that last sentence. Thank you :)
@Kristen, I was already feeling teary and then I teared up more after reading your comment. *sniff*
@Nat, my boss simply rescheduled what she needed, and it is now quite officially in my planner. You are PLANNED. And thanks for the hugs, and the ear when I need it. And the awesome tea.
@Momma, I know you know what I'm going through. We lead parallel lives, except you have a two boys and a girl and think you might be more financially stable - but I'm not jealous or anything. :P xo
Thinking of you, Amanda.
ReplyDeleteDearest Mav,
ReplyDeleteYou and hubby are doing such a GREAT job! It is T-O-U-G-H!!! I "get it"!
I hope that you will try some of the suggestions that I gave you the other day. You can also try brushing his hair with a dry brush, then a wet brush and then maybe work at spraying his hair wet (or he can; make it like a game, like how fast can he spray his whole head and try and beat the time) or let him pour water on his own hair. I have dealt with the sensory hair washing. It is not fun! Baby steps to desensitizing and accommodating Gutsy's preferences may help a lot in overcoming this "painful" feeling for him.
I hope that something I suggested helps. *HUGS* *HUGS* *HUGS* :) H OX
I have been following your blog for a while now. You are such a brilliant writer. You are such a brilliant mum. I really admire your parenting skills and the way you have faced many challenges that you have had, and written about. I have no kids, but I was a kid that suffers from anxiety, social and generalised and when I think about how you deal with your kids I kind of relate as a person that has found change difficult (amongst other things). My sister has a young boy that she thinks may have anxiety which is possible when she talks to me about some of the issues that have come up. He's still pretty young so it could be that he is different to his sister. she doesn't have access to outside internet from her work. I send her your posts. Anyway, I guess I also wanted to say to post happy or post sad, you could probably post a shopping list and I would find it interesting. Paul
ReplyDeleteI can relate to so much of how you describe Gutsy with Gryph, although thank god taking him off gluten has made a world of difference, he still definitely has his moments, but not like it was.
ReplyDeleteYou and the Geekster are so lucky to have each other and the boys are so lucky to have you both, and even if somedays you have to hook up a coffee IV to get through the day, you're still doing it with grace and humour, and they will remember that xoxo
hairwashing sucks!
ReplyDeleteAnd a good occupational therapist will change Gutsy's life for the better (and yours too.) because it allows kids like ours to be more the fun kids that they are at their best more often and the dragon that lives inside them gets sleepy.
Amanda, you sound like a wonderful mom, but just remember we are human first and that is what makes our decisions we make for our kids so important and real. We try to live in our childs shoes before making most of our decisions, we analyse, break down, make the decisions and then keep going. When we have kids with special needs our job as parent is magnified enourmously. We have to first realize something is wrong, analyse what it could be. Then we have to take the steps to try and find someone to help us, help our kids. Then WE GET THE OFFICIAL DIAGNOSIS. That can hit us even harder, even though we knew something was not the way it should be, deep inside we are always hoping we are wrong. After we kind of accept the diagnosis we then go through a grieving process. After all those steps when then have to find the energy and strenght to share this information with our families first, which makes it that more real and hurtful. From the sound of it you and your husband are doing a great job, try not to be to hard on yourself because we (as parents) need to vent, cry, freak out and also hide sometimes, to be able to gather our strenght to keep going and to keep our kids going.
ReplyDeletep.s. in the past my friend used a leave-in shampoo for her son whom is on the spectrum. You can purchase it at Jean Coutu, she doesn not remember the name but it comes in a spray bottle and you basically spray it into the hair and gently pat or rub the hair.
When I need to cut my son's hair I have to prep him for about 3 weeks in advance everyday, a few times a day telling him I'm going to cut his hair. Then when the day comes we both basically have a melt down, then after it is done, after many tears and raised voices, and many bribes or consequences (which ever works best at the moment) and he is out the shower, he hugs me and is so happy that it is over and then he tells me he loves it. He then apologizes for his actions etc... I try to remind him how it did not hurt and that he looks so handsome and give him high fives and tell him he did it and wow, "he is such a big boy", then I process to give him what I promised I would. In the end,during all of this, I was feeling like a bad parent because I had to basically force him to have a hair cut. xoxoxo
I'm glad for you and Geekster, even for the sometimes, that you can work it out together... how to be these crazy tired worried sad parents and still be able to look at each other in hope and love... its a very amazing thing.
ReplyDeleteNo voice on election day? Im disappointed.
ReplyDeleteteachers and parents are grossly underpaid. i don't know how you do it. the patience in your voice. all parents who care seem to have that patience which i lack. so i'm constantly in awe. my sister called me yesterday and told me i could have her kids she was done, over it. but the girls wouldn't leave her in a million years.
ReplyDeleteGood job Mave! You're terrific! (and the hubby,too, of course!) I'm a speech therapist and work with children who have sensory deficits, so I have a window into your world. I work closely with occupational therapists and really encourage you to explore that avenue! This could really make some very real changes in your routine (therefore your day; therefore your life). I love how you are using your "tool box" (that's a tool box full of coping tools for hard situations). Writing is such a great tool to have for blowing off steam, and you do it so well (write...not blow off steam :-)). If you do find an occupational therapist, you might consider asking her about a support group for families who have children with similar diagnosese. Not only do they provide you with tips, help, empathy, but will do the same for your other children without the sensory issues. It's amazing how much reassurance they need/ask for during these support group meeting times. You're allowed to put it out there like it is. People respond to that because they feel similar, if not the same. I'm pulling for you!
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