The (amazingly helpful) Appointment.

Ahh lunch time.  I’m taking an actual break today!  I totally don’t have the time (I have two huge monthly pieces of my job due tomorrow) but screw it….everyone else is out at a day workshop and I’m about the only one here aside from the front desk reception.  It’s nice to be able to make a cup of tea, breathe and do something just for me for once.

Dayne was an angel and left work early yesterday to drive all the way home to get Colt.  They turned around and came back to town just in time to meet me at the Psychiatric Institute where Colt sees his psychiatrist.  This man is amazing, let me tell you.  We lucked out so huge when we found him.

Way back when Colt was 3 we started our campaign to get him onto one of the doc’s caseloads.  It’s a self referral service, of course, because GP’s cannot mandate psychological testing (well, they can, but not directly to the institute…they’re the higher care body who is linked directly to the Ministry of Health which governs all of health care in Canada.  Dayne and I nearly lost our jobs, we took so much time off rotating shifts at the Institute with envelopes bursting with medical notes and test results from Colt’s first three years.  We begged, literally, for help and finally one of the docs agreed to take Colt on as a patient.

We only go a few times a year at this point but there is zero pressure from them to make appointments.  They’re so busy they can barely handle what they have….but this wonderful doc, Dr. Rob, we’ll call him, went out of his way for us, again, and arranged to see us at 5:30 to make things easier on us.  5:30!  The entire hospital I work in clears out 4 (aside from the nursing shifts) so a 5:30 appointment on a Wednesday is unheard of.  Dr. Rob also sat with us until nearly 7:00 pm and when we left he wasn’t even almost rushing us out the door.

Sometimes we forget how good it is for Dayne and I to meet with Dr. Rob, thinking of his as Colt’s doc, not someone who will help us achieve our goals.  He always starts by chatting with Colt about kid things…school, sports, superheros, whatever he can remember as being of interest.  Then, he will ask Colt a series of questions and observes him as a whole, watching his tics and gestures, movements, eye contact, flow of though, logic…it’s really interesting to watch it happen.  Colt responds well, tries hard to be personable and polite; it makes me love him so much too see.  My biggest fear for him is that he stops trying.  Then Dr. Rob will start discussing things with Dayne and I, asking how the school year is going and how Colt is doing.  We generally relate all the BS we’ve endured from the school since our last appointment and he sits there and bats away the nonsense

“So what are they considering his behavioral issues to be?” He asked.  “Does he scream or disrupt the class by throwing physical fits or items across the room at his peers?”

“Oh gosh no!” I answered while Dayne chuckled and Colt looked so bored he was about to pass out in the chair.  “Basically, he refuses to do what they ask him.  In the afternoon, the only expectation of him is that he remains physically present in his classes and they’re not even managing to do that.”

But does he swear?  Spit?  Get into physical fights?” Dr. Rob looked a bit surprised.

“No no, nothing like that.  He refuses to do his work.  If they push him he threatens to swear at them and then he’s sent to the office and I get a call to redirect him and his behaviour.”

“Well that’s ridiculous!” the doc said and all three of us smiled in unison.  Isn’t it though?  We get so emotionally invested in the school and the goings on there that we get lost in the issues and bogged down with policy and punishment (remember the times they suspended him for swearing on the playground but wouldn’t give him a student mentor to help guide him while outside in a huge crowd of kids?  Dr. Rob was actually angry about that.)

We talked about the presentation they wanted to do for his classroom about autism.  Dr. Rob asked me how that was going to help Colt.  After several moments though, I answered that it wouldn’t.  The kids in his grade and class are kind to him.  They all know he’s autistic…..a presentation for them won’t help Colt in any way, in fact, the doc worried that it might make Colt feel under the microscope, like people are telling all his secrets to the whole class.  I wrote an email this morning halting that presentation….I can’t believe I almost put him through that.  I don’t think he would react too badly but really, what’s the benefit?  Nothing aside from the school getting to say “We’ve done all we can!  Look at our efforts!”  Screw them.  It’s been ME who drives this entire thing and has been me alone from the start.  Even Dayne can’t be counted on to behave rationally. 

Anyway….things went along like that and Dr. Rob told us to stand strong with the school.  He said that if they threaten to take away his EA support (which means he’ll do nothing in the morning and nothing in the afternoon) to tell them we disagree, first, and second, that we hope they have a great plan B in place because Colt will be there until grade 8, regardless.  There are no other places for him to go…

Oooh and the ASD placement they’re pushing to get Colt into…haha…we asked about that and Dr. Rob nearly jumped out of his chair.

“NO!  No don’t allow them to push you into that!  The programs are good, I’ve been over to see four of them in the last three years, but the kids who go there seem to be the ones who are a physical threat to themselves or other students or are extremely disruptive to a regular class or school.”

He says the minimal distractions, army-like structure and padded cool down rooms (closets with no window, just bean bag mats and a tiny little closet they lock the kids into when they freak out) are in place for a reason.  Like us, he agreed that Colt spending time around children who are fall less socially functional than he is will only serve to pull him down and will teach him absolutely nothing about self coping or regulation.  I nearly cried with relief at the sound of someone agreeing with me.

So we will not allow an application for the ASD classes.  The doc said he has rarely found if effective for kids like Colt and I can stand on that, regardless of the pressure the school puts on.  He also recommended that we have him reevaluated and have a new IEP designed.  His hasn’t really changed since grade 3.

Then he asked about the swearing from last year.  He did a few quick psychological test and pushed Colt (a bit) into answering more difficult questions than he is easily able.  This caused an immediate stress reaction and his twitches and tics came out everywhere.  I don’t think there was a single part of his body that was still throughout the session.  At it’s conclusion, Dr. Rob announced that he believes Colt has Tourette’s Syndrome (it’s rather often found as a co-morbidity of autism, especially at Colt’s level of function).  It’s not severe and could get better or worse with time, but he wants to add it to Colt’s overall diagnosis.  He smiled when he said that it might help him keep his EA support through grade 8, at least.

After hearing that I very nearly cheered.  I know that must sound so odd to most people, but the fact that maybe the swearing and strange behaviour that started last year was due to the Tourette’s starting up in his messed up little system.  Knowing it might have a root cause relieves me of the fear  that Colt is turning aggressive, surly and entirely lacks empathy for his fellow man.  His frustration levels make much more sense that was too…..but that poor kid.  Can you imagine the struggle he faces each and every day when he tries to “behave” the way everyone expects him to?  I hate so much that he suffers that way.  Any way.

We came away feeling a little happier, more empowered and refocused entirely on what matters most:  Colt, his education and his happiness.  It puts Dayne and I on the same page immediately.

As we were walking out Dr. Rob pulled Colt off to the side and got on his level.

“Hey Colt?  I see a lot of kids here who need my help at school and at home.  I’m really glad you come to see me too because you are a really nice kid with a great heart.  Don’t let anyone tell you they’re better than you, because I can promise you that they’re not.  Okay buddy?”

Colt offered a ‘fist bump’ and Dr. Rob happily bumped him back.  I couldn’t have been more moved.  Everything changed in that moment, settled down and refocused.  We’re ready for the next hurdle now, whatever they try to throw at us, we’ll be ready.

Thanks Dr. Rob.  I hope you know how much your help means to these kids….and their parents.  🙂

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About Grainne

My name is Grainne. This blog has been with me for years now and has served as a journal, a confessional, an outlet and a place for me to create and express my love of life. Thank you for stopping by and for becoming a part of this life long journey of mine. I appreciate every single one of you who takes the time to do so. :)

6 responses to “The (amazingly helpful) Appointment.”

  1. KittyHere says :

    Fantastic. So happy you have Dr Rob. And the Tourrette’s — even though you would not wish it — puts the swearing in a whole other context. Good to know he supports you in your approach to Colt’s schooling.

    • Grainne says :

      We always breathe such a sigh of relief when we meet with him. I must remember to make more regular appointments! (He should charge triple since he really helps us all!)

      The Tourette’s is exactly as you say….kind of a double edged sword. I can easily see how it might help him in the future though, especially when it comes to getting disability. (hugs) Thanks my friend.

  2. nobody says :

    I’m so, so glad you have him. He sounds wonderful. It can be incredibly useful, when you’re dealing with a fucked-up institution like that school, just to have a professional confirm that what you’re asking for are the right things–when you’re trying to fight a big institution where everyone is against you, you start to feel crazy and wonder if your demands actually are unreasonable. I’m glad he was able to confirm that the things you’re pushing for are the things Colt needs, and I hope that’ll help get his needs met. (And yours!)

  3. ~meredith says :

    Thanks, Grainne, for writing such an awesome blog. Personally, I think you’re awesome. It’s so profound reading your posts, understanding that your challenges don’t stop you. Sounds as though your efforts paid off. GOOD!

    Happy Friday, Warrior Woman. YOU are the difference between have and have not… not just for Colt, but for everyone who reads, here. Thanks for continuing to write. We all have so much to learn about… and honestly, without labels… I learn as much about myself as I do about you and yours. We may love to specialize ourselves (as humans), but I suspect we all share more likenesses… in varying degrees… than differences.
    xx. Meredith

    • Grainne says :

      Can I just tell you that you nearly made me cry? This was the loveliest comment you could have written me and it’s stayed in my heart since I first read it. Thank you. xox I learn a lot from many blogs here, yours very much included. It’s a warming thought, knowing you’re understood.

      Thanks for making me feel so good. *hugs*

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