The sweetest words I've heard in a year

This week has been rough. 

I was away for part of the weekend at Social Capital Conference and it has thrown Brandon right off. He missed me - a lot. I can’t help but feel bad about that. It dampens my personal excitement over the success of the conference. I know I can’t be with him 24/7/365, but it doesn’t stop the guilt I feel about not being there when he feels he needs me.

Monday, Matt had to take most of the day off to be with Brandon. His daycare tried to accommodate him, but when a single child out of 50 needs one-on-one attention for a significant portion of the day, it can compromise the safety of other children and stress resources too thin and that’s not fair - to the children or the caregivers. 

Tuesday, we met with the Developmental Pediatrician. For the second time Brandon didn’t want to cooperate with completing the assessments. He has it in his head that when he goes to her office he gets to play with Lego. Sigh. 

In the end, she was once again flexible. She gave him the Lego and then observed him. She spent a lot of time talking to us about our concerns and asking questions. It wasn’t productive in the way we’d hoped, but it wasn’t a waste of time. The most important part for us was when she looked me in the eye and said (I’m paraphrasing):

You know this isn’t about your parenting. You’re doing a good job with him. 

I told her that was good to hear because we’d had it implied that we’re not doing a good job as parents. And, of course, we all need as much fuel added to the fire of doubt that comes with parenthood. Yep, we sure do. She responded (paraphrased again):

I figured you had. This isn’t your parenting. It’s definitely something else and we have to figure out what that is.

Sweet relief. Music to my ears. Confidence booster. Tear-inducer.

You see, we do what we have to do to maintain peace. Sometimes that means we spend money on Brandon that we’d rather not spend. Occasionally that means giving him food that isn’t exactly the healthiest. The odd time it means that we don’t go places we really want to go because it’s easier than forcing him.

It never means that we compromise his long-term health, immediate safety or security. 

If there’s one thing I’ve learned as a parent it’s that everything I believed about parenting before I had a child was mostly a load of crap and I’m quite willing to go completely against those things to reduce the stress on all of us. We have enough unavoidable stress that we don’t need to add to it by trying to force a child to do things that he’s absolutely unwilling to do.

If that makes me a bad parent in some people’s eyes, that’s fine. If people think I’m spoiling my son, that’s fine. They’re entitled to their opinion, even if it’s wrong.

Today we had another rough morning. Brandon’s daycare was going on a field trip to the beach and all children are required to wear a tee shirt. He didn’t want to wear one. He only wanted to wear his life jacket, which he can’t safely wear in the car. So, he didn’t get to go on the field trip and that breaks my heart. I know he needs those times to help him learn. He needs those opportunities to develop socially. It won’t happen when he’s at home with Matt or myself. That’s three days in a row this week that he’s stayed home (or been sent home) from daycare.

I don’t know what to do. I’m nearly out of vacation and I have no more sick days and though Matt has more than I do, it’s not realistic that he carry the load alone. It’s especially unfair to him when Brandon really needs me and doesn’t respond positively to Matt’s presence. Sigh.

One day we’ll figure it all out. I hope. 

The greatest learning experience ever

Having a child has been, by far, the most enlightening experience I’ve ever had. 

Realizing that he has special needs beyond what is considered to be normal has been an overwhelming learning experience.

We just got home from our first appointment with a developmental pediatrician, who was wonderful. Really, really wonderful. Despite not being able to finish her assessments, she was able to observe some things about Brandon and teach us a bit more about autism spectrum disorders.

I don’t have a diagnosis yet, but I have a suspicion of what it might be and it’s not quite what I expected before talking to the doctor this morning. At the same time, it’s not going to be a complete surprise. I refuse to quantify it as good or bad. It is what it is. No matter what the doctor says, we will have challenges ahead of us.

To say I’m completely okay with it would be a lie, but I don’t feel upset. I’m not sure how I’ll feel when I actually hear and process the words from the doctor, but we have a few weeks before that will happen now. Maybe even longer.

A slight reprieve - time to prepare mentally and emotionally.

Most of all, I’m just ready to get to work on helping Brandon. There are more assessments to come and therapy and it’s time to get started. We’re finally moving forward. It’s good. Sometimes scary, often overwhelming, but definitely good for him to get help that he needs.

My child is just like every other kid - he's weird.

I love this quote. One of the PAB speakers used it and I’ve adopted it as my personal mantra.When I was a child, my father (who reads my blog, so I’m totally going to bait him a little) essentially brainwashed myself and my brothers to believe that the statement, “You are weird”, was a compliment. Dad, who I often refer to as a walking dictionary (because of his freakishly large vocabulary of freakishly large words) liked to teach us the meaning of words - sometimes in a thesaurus kind of way. Sometimes in a dictionary kind of way. (I knew the meaning of hyperbole when I was about eight, because dad liked to use hyperbole…a lot.) Weird was more a of thesaurus word from his alter ego, the walking thesaurus.

Being called weird is a compliment because it means you’re unique.

As I child, I think I often mentally rolled my eyes at Dad’s brainwashing. As a mouthy teen, I fought back with, “Yeah, I’m unique; just like everybody else.” (I think my intent was to irritate my dad, but somehow he thought - and still thinks - my response is hilarious.) But today I appreciate Dad’s perspective, which is confirmed quite nicely by if you look up weird and unique.

We are all weird!

As I’ve started talking about the process of getting Brandon assessed for developmental delays/disorders, something interesting has started happening. Friends and acquaintances that don’t know Brandon (or don’t know him well) listen to one or two of the reasons we’re having B assessed and jump in with, “Oh, my kid did that; that’s normal!” 

This rubs me the wrong way and I feel like I have to justify what we’re doing even though I know that this is the right thing to do for Brandon to ensure he gets the absolute best start possible. And yet, I think the intent behind this statement is basically good. People want to reassure me that my son isn’t “abnormal” or somehow flawed.

Normal is relative

My beliefs about this process as it relates to my son can be summed up in three points that I shared on Kids in the Capital recently:

  • Nothing is “wrong” with my son. He is exactly right just the way he is.
  • Assessments are just a jargony way of saying you have to be creatively vigilant and diligent to learn how to reach a child in the way that works for them.
  • I will do whatever it takes to help my son, because just as I get to share my stories in a way that works for me, I want him to find a way to share his.

My motivation behind getting him assessed is not to highlight all the things that are “wrong” with him. It’s to figure out how we can change what we’re doing so that our communication and behavior is right for him.

Put more simply, I want to know what I can change to help him. The assessments aren’t about changing him at all or making him more “normal”.

“Normal” is not interchangeable with “Norms”

Raise your hand if you have ever or know a parent who has ever compared their child with another child. Pretty much every person reading this in the western hemisphere should have their hand up (which kind of amuses me to imagine), because we ALL do it.

The problem with these comparisons is that not everyone knows what norms are. Often, what is within established norms is confused as “normal”. Having been raised by a walking dictionary, I often refer back to the dictionary for precise meanings: defines “norms” as follows (I skipped the lengthy math definition):

a standard, model, or pattern.

general level or average: Two cars per family is the norm in most suburban communities.

a designated standard of average performance of people of a given age, background, etc. (re: education)

a standard based on the past average performance of a given individual.

the greatest difference between two successive points of a given partition.

But what is “normal”?

Normal is complex and, in my opinion, completely relative to personal experiences. The dictionary definition of normal doesn’t address societal interpretations and connotations behind the word. Behavior that can appear normal for one person/child may seem completely out of left field for another.

Brandon is the only child I’ve had. We don’t get to be around other children very often. We had a sense that he was delayed in certain ways, but we erred on the side of “wait and see”. It wasn’t until his caregiver (who is around other children quite often) spoke up about her concerns about where he was at compared to children two years younger that we knew we needed to get him help.

I don’t need or want to be placated.

I have a plethora of specialists who are trained to spot areas that we can work to help Brandon. We know there are challenges to overcome. I’m trying hard keep a level head through this process rather than be an emotional basketcase.

Parents of children who are going through the assessment process already have enough doubts about our parenting abilities. It’s incredibly frustrating to do the instinctive things parents do and find they don’t work. Experimentation with methods that may seem to outsiders like coddling, spoiling, helicoptering and other negative terms can lead to judgment from others about our parenting abilities. That’s going to happen with strangers - there is absolutely nothing any of us can do to stop it.

But I hope that people who know me can recognize that, like any other mother (and father), we are doing our very best to do the right thing for our child. It isn’t unusual for even siblings to need different things from their parents.

It’s not inequality.

It’s parenting individuals.

Individuals who are weird.

So, I won’t tell you your kid is normal if you don’t tell me mine is, because who on earth wants to be normal? It’s much better to be weird.

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.

It might be difficult, but we will get through this

When I look at this picture, I see the kind of pure, unfettered joy that is so often present in my son. Overall, he’s happy, good-natured and interested in discovering the world around him. This particular picture was taken at a recent family get-together when Brandon had the far-too-rare opportunity to visit and play with his Canadian cousins, aunts, uncles and grandparents.

I was thrilled with how quickly he made himself at home and began interacting with the family, despite how little he’s been around them. We’ve been back for two weeks and he’s still talking about them, which means we’ve got to start making more trips to see them.

So much has been happening with Brandon over the last few months. Some of it really good, some of it not very fun and some of it has given us cause for concern.

He’s getting to an age where I’m hesitant to write specifics about the challenges we’re having, primarily because I don’t want him to read what I’ve written one day and be embarrassed that I shared these things with the world. I don’t believe what’s happening is cause for embarrassment, but that doesn’t mean he won’t. At the same time, I feel a selfish need for release, to feel the sympathy/empathy from fellow moms, to know I’m not alone.

The situation is getting to me more each day. It breaks my heart to see him struggle. Until we can figure out if this is just age/development related (which I doubt) or something that requires working with specialists, I’m going to keep it offline. 

We’ve started the process of tapping into local resources to get some help for him and I know that with time and care, everything will be fine. 

He’s a smart, beautiful, happy little boy and whatever happens in the coming months, we’ll get through it.