The most personal and hardest to write post I've ever published...

This is a hard subject for me to write about. I want to maintain my son’s dignity, but I also want to get support that we so badly need. It wasn’t until I started talking about this on Twitter and Facebook more openly that I stopped feeling so alone and started to focus on what I had to do. But let me back up a little and start from the beginning.

Last summer, Brandon’s daycare provider - a friend of mine - expressed concern over his communication skills. It was initially a concern because he wasn’t making any progress with toilet training. She gave us information about a program called First Words and we took him to get an intial assessment done in which they determine whether or not there is a need for him to have a more in-depth assessment. It was a 20-minute assessment with a lovely (and very pregnant - that’s thrown in there for context later) speech pathologist. We walked out with paperwork and a referral to First Words.

In December, Brandon’s caregiver once again expressed concern about his development. This time she noted fine and gross motor skills, indicating that he doesn’t seem as advanced as the two-year-olds in her care with certain tasks.

Boy, that was hard to hear. I cried. A lot. Then I called his doctor, hoping that I could get through the visit without breaking down. Matt and I both went for this one just before Christmas and I held onto my phone, reading from a list of notes that Matt and I prepared, distancing myself emotionally from the implications of my words. What I felt about all of this really didn’t matter - what mattered was getting Brandon the right help.

Brandon’s GP is a very nice man. He’s good with children and listened to our concerns. He did some visual assessments asking Brandon to perform a few tasks, but ultimately, he trusted our assessment. (Yes, some doctors do!) Our appointment lasted 10 minutes and we walked out with the promise of a referral to a developmental pediatrician.

Over the Christmas holidays, Matt and I were both off work and we worked very hard to get Brandon into a routine of potty training. We did a lot of laundry and did our best to keep smiling and reassuring Brandon even as we got frustrated. He had his first dry, accident-free day in the middle of March. He’s mostly dry and accident-free at daycare now, too.

It was in late March that Brandon started at a daycare center for the first time. I think it’s really helped him. He seems to have more confidence and is interested in a wider variety of activities. What thrills me most of all is his renewed enjoyment of books. It means I’m having to buy more books for him, but I’m not going to complain about THAT! This is what I have wanted for him all along.

In late April, I finally reached out to some private specialists to get moving on this process. Our initial foray into private care was derailed by the unexpectedly early birth of a baby (she was expecting) and it just took me a while to get back on the wagon. (That’s pregnant speech pathologist number two and we’re not done yet!)

The speech pathologist I contacted in April booked us in for late May and we needed two sessions to complete the assessment. This was because Brandon got frustrated by the changes in activities - transitions are not easy for him. This was despite using a visual schedule to help him. Unfortunately, he got very upset and I had to spend 45 minutes calming him and readying him to leave. The therapist was lovely about it and gently suggested that he may benefit from some behavior therapy as well.

The following week, the “shit hit the fan” or “all hell broke loose” or however you want to put it. Every single day turned into a fight to get Brandon out of the house, and it didn’t take long to realize the reason was that a change in theme was happening. Brandon was upset the entire week that the bear theme he’d gotten so attached to was over.

  • Monday was a holiday.
  • Tuesday, Wednesday and Thursday Brandon had accidents at daycare.
  • Friday I was called at 11:15am to pick him up and take him home.

That broke my heart.

When I got to the daycare, he was inconsolable to the staff but immediately climbed into my arms and calmed down. The staff was incredible, explaining what happened in such a way that didn’t blame or rebuke Brandon. They are well aware that he didn’t understand what he was doing. Their concern was his safety and the safety of the other children and diffusing a situation that had become too difficult for them to deal with on their own.

Within minutes, Brandon had fallen asleep in my arms. This is what he does. He gets so upset that he can’t calm himself and eventually he just passes out. Sometimes we can’t even figure out what triggers the upset, but often it’s something not happening the way he wants. Sure, this is life and all kids do that, especially the “spoiled” ones (as I’m sure some would like to say to me). And yet, this is not the kind of tantrum that a spoiled child has. It’s far more intense than that and we CAN tell him no without causing a tantrum every time.

It was on that day that Friday just a few weeks ago that I got fed up with the waiting.

  • I called Brandon’s doctor. Though there was an initial hiccup that sent me swirling into despair, it took only a few minutes for them to call back with good news that the developmental pediatrician would see us by July 1st. I’m choosing not to freak out that it’s June 11th and I still don’t have a date/time for said appointment.
  • I called First Words, desperate for news of the appointment that was supposed to happen by the end of May (just one week away). I got a call back the following Monday and our first appointment later the same week, (with our third very pregnant speech pathologist who told us she’d be going off in just a couple of weeks). Oy.
  • I emailed the private speech pathologist to find out if she had any behavioral therapists she’d recommend. 

In general, I felt panic. Frustrated. Annoyed. Helpless.

All I wanted was to know how to help my son. This came through loud and clear Monday morning after a particularly ugly meltdown on the way to daycare that resulted in this little rant on Facebook:

I’m stressed and getting pretty frustrated and upset with Canada’s “fabulous” medical system. Thank god my son’s life isn’t in danger.

Unfortunately, when I have to wait ten months (with insufficient communication about when the wait will end) for help for my child whose problems are escalating and I have to turn to private care for help (which is still no guarantee of speedy treatment), I’m more convinced than ever that this system is broken and needs fixing.

I cannot imagine how difficult it must be for families who have more serious needs. We’re barely coping at times.

Let me be clear: I do not blame healthcare professionals. They are likely just as a frustrated by the system when I know very well from talking to and working with them that they want to help us. We’re lucky, too, in that we do have a decent amount of coverage for some private care as needed. My frustration is with a system that is lacking enough resources to be optimally effective for children and families in need of help. Our quality of life as a family is impacted, even though this isn’t life or death. I cannot imagine what it must be like for families who have more severe concerns to work through.

We had our assessment at First Words. Brandon was tired and once again became frustrated with transitions and not being able to continue with activities he enjoyed. The appointment was an hour and a half and it took an additional hour and a half to calm him and get him out to the car. Had Matt been there, he could have carried him out, but I don’t have the strength to do it by myself. Matt can’t be at every appointment. I can’t be at every appointment. We both work full-time and have obligations we have to fulfill. 

The result of our First Words assessment is that Brandon has a referral to OCTC now. This is very good news, because even though the wait will be long, OCTC can offer a variety of therapy options.

We have no family in Ottawa and doing this alone is exhausting. That Friday? The one they called for him to be picked up from daycare? That was the one night a month that Brandon’s daycare opens at night for parents to drop their kids off for a few hours. Needless to say, we didn’t go in May. The next one is June 22nd. I have a friend who is determined that we should get out and constantly offers to help. We plan to take her up on that offer at some point.

I’m personally affected in that I have had to take stress leave from work for a short time. My neck and shoulders are constantly in painful knots. Matt is showing signs of stress as well. 

I have essentially been silent about this for the past 10 months. We haven’t known what we were dealing with - a development delay or a developmental disorder. As time goes on, I am more convinced this will be a disorder we’re dealing with. And I’m truly fine with that. Whatever it is, I just want to know how to deal with it.

And now you get to come along for the ride. As much as I hesitated writing about this in any way online, I know it will help me and Matt navigate this foreign space we’re traveling. We don’t know what we’re doing. But when I lost it a couple of weeks ago and started ranting about this, I got tons of advice. More importantly, for me at that particular moment, I got support.

We can and we will get through this. We have a long way to go and I’m sure the frustration will return from time to time. I’m going to try to learn a new kind of patience. The breathing deeply through seething teeth kind. :)

Thanks for sticking with me. I know it was a long one.