Rethinking My Love-Hate Relationship with the Term “Special Needs”

“It will never rain roses: when we want to have more roses we must plant more trees.”

– George Eliot

T received a pair of skates for Christmas from my Aunt. We took him for his first skate yesterday. As expected with first timers, he struggled. After two slow laps, he was fed up. Our 4 year old gets frustrated very easily and he announced loudly that he was done. He was edging towards a tantrum, so we stepped out and let him chill outside the rink.

I have a love-hate relationship with the term “special needs”, because it often puts a label and restriction on what people, including myself, expect of our children and how we respond to their struggles.

It is true that having a prognosis of at-risk FASD has allowed us to access immensely helpful early intervention services for T. And disclosing his prognosis to the school has allowed him to be placed in a specialized kindergarten program where he is receiving more focused supports to maximize his academic success.

But we‘ve also experienced people who’ve lowered their expectations when we are forthcoming about T’s challenges. In the latter half of his preschool year, our son often spent part of his day in the “office” sitting with the administrator, because he was being disruptive in the class.

We were not always forthcoming about T’s prognosis. In the early days, we kept quiet, because we worried people would write him off and not try as hard for him. But we now feel differently and think that awareness raising and advocacy are far more effective in combatting labels about an invisible disability than trying to conceal them.

I will say this loudly and repeatedly: T is smart, curious, caring, funny as hell, and tenacious. But he struggles a lot with hyperactivity, focus, impulse control, and self regulation. These qualities create challenging situations for himself and for those whom he interacts with, including classmates, educators, family, and us, his parents.

But how we respond to and how we teach him to respond to his struggles are important.

We read a lot about other parents’ experiences with their FASD-affected children. We’re thankful for their wisdom. In some cases, we’re thankful to not have encountered similar situations and we pray we never have to face some situations we’ve read about. We remind ourselves that while some challenges are often common, every child’s trajectory will differ based on their circumstances.

I struggled with the term “special needs,” especially in the first year, but I feel that my hubby and I have since reclaimed it for ourselves and more importantly for T as a badge that can be empowering & motivating.

And here are principles we try hard to focus on – some days are easier than others to do so:

  1. We all have challenges. T just happens to have a few exceptional ones – resulting from actions he himself did not make.
  2. We won’t let T be restricted or defined by his challenges – or use them as an excuse. We will help T develop the skills and resiliency he’ll need to work through challenges, big or small.
  3. T can, does and will learn. It just often takes more effort, a different approach, and a lot of patience and repetition – and often times, some aggravation and frustration too!
  4. Focus on a growth mindset. Teach T it’s important to try and effort is just as important as the outcome.
  5. Celebrate the victories and focus on the positives and the strengths. There are many. They just often get drowned out.

When T came into our life at 14 months old, he wasn’t fully walking yet. It was fun watching him go from cruising to full on walking, going up and down stairs and then running.

I thought about these early days as I watched him walk around outside the rink excitedly. He had no problem walking with skates on, so it’s only a matter of time till he’s comfortable on ice. And when he builds his confidence, his enjoyment will surely come too.

Ho Ho Hold the Meltdown: Focusing on the Merry in Christmas

“When little people are overwhelmed by big emotions, it’s our job to share our calm, not join their chaos.”

– L.R. Knost

I look forward to Christmas every year, because it is a time to rest, to reflect on the past year, and to catch up with family and friends.

But Christmas and the holidays are often a challenging time for children with special needs, like our son who has a prognosis of at risk for FASD and who struggles with emotional and self regulation. The holidays can be a challenging time for kids like T, because of sensory overload, over stimulation, large crowds, a change in routine (e.g. no school), and anxiety around Santa.

My hubby and I alternate Christmases with my family in Toronto and his family in New Brunswick, the latter of whom we celebrated with this year. This year was the third Christmas that T has celebrated in the Maritimes with his Grammy, “Dad Dad,” and his aunt and cousin.

While this year’s Christmas was filled with the usual moments that tested our patience, it was also filled with many positives. Here are a few things we learned from Christmas past and present that helped us focus on the merry in the holidays and to avoid the ghosts of Christmas future:

Weather the Meltdowns

I’d like to say I’m better at anticipating T’s meltdowns – usually when there is an unexpected transition in task – but sometimes they just come without warning. Like when we asked T to stop playing with toys and to get ready for bath, he went into a full blown screaming fit, pulling the cloth off the coffee table and throwing toys at my face – all in full view of his grandparents.

One tried and true response my hubby and I have learned about meltdowns is to not throw fuel into the fire by admonishing him in the moment, but rather let the storm pass. Walk away or pick him up and move him into a quiet space away from the crowd if we have to. And it will pass. When he’s calmer, use the opportunity as a teachable moment to explain what happened.

Rethink Santa

This video above was released this Christmas from the National Alliance on Mental Health. It’s told from the perspective of Santa Claus and challenges us to rethink how we reward or reprimand “niceness” and “naughtiness” and how this could create mental health consequences.

This year was the first time that T grasped the concept of and became excited about Santa. The daycare staff helped write a letter to Santa that we mailed and received a prompt reply from the North Pole for. This was a nice contrast from the first time we took him for a Santa photo in 2016 and he had a meltdown because the bearded red-suited man terrified him.

I will admit my hubby and I used Santa this year to encourage or discourage behaviours. We also downloaded an app that lets us receive a call from Santa and we used it to let T know that if he was not behaving, we would let Santa know and he would not get his gifts on Christmas Day.

I noticed the anxiety and the real tears that emerged when T thought that Santa was not coming, because of something that he did. I will admit being amused by it, especially by how much he believed that there was a real Santa.

In hindsight, I think about the token economy his teacher uses to help shape behaviour. It focuses on the positives and no tokens are taken away for undesirable behaviour, because children like T will inevitably exhaust the tokens and what happens when there are no tokens left to take away?

To be clear, I’m not advocating that we bubble wrap our children. But we will rethink Santa – and how we position rewards and punishment – in future years.

Think About Less is More

We arrived at T’s grandparents at night after a 8-hour drive that T did very well at. No meltdowns and we only had to give him Netflix for 30 minutes when he was getting squirrely at the end.

T was on full blown charm offensive with his grandparents. We played a board game. Not only did he sit still and focus, instead of throwing game pieces up in the air like we expected him to, but he surprised us by winning the game of Topple. Maybe this was going to be an ok trip, I thought, but we celebrated prematurely.

The second his seven-year-old cousin arrived the next evening, he went into overdrive mode and there was no turning back. Started running around the house excitedly, because he had been looking so forward to seeing her for the past week. This was further escalated on Christmas morning when he opened his many gifts. We could just not calm him down.

We’ve learned over the years that kids like T don’t do well with over stimulation and regulating their emotions – even positive ones, like excitement – when they are overloaded. They can go from 0 to 360 in seconds and have a hard time coming down without crashing into a meltdown. The holidays can be especially triggering, because of all the excitement (or anxiety) of visitors and gifts – and managing T’s emotions then becomes challenging.

I’m always torn between indulging T during the holidays and with going with less is more.

Don’t Sweat the Small Stuff

As I’m finishing this post, I’m sitting on my in-law’s dining table trying to get a hyper and distracted T to finish his dry bowl of Cheerios, which had been put out two hours ago. Every few seconds, he’d get up and run around with his spoon. His Grammy sat with us and tried to coax him to finish as I tried not to lose my shit. At the rate we were going, he’d finish the bowl when he turned 16.

The change in environment and routine has thrown T completely off. Hard-built structure and his ability to transition in tasks and to comply to simple requests have gone out the window. Simple things have become trying battles that often resulted in tears and tantrums.

During these trying moments, I reminded myself to shrug it off. We were on vacation. Who cared if I wasn’t going to win the Parent of the Year prize. We would readjust when we got back home.

And in addition to not sweating the small stuff, I reminded myself to amplify the positive moments, because there were so many and as parents of children with special needs, we often let the good get drowned out by the moments that make us want to poke our eyes out.

And here was my favourite positive moment: On Christmas morning, T got up at 9:45 a.m. and thus letting us sleep in (a Christmas miracle). He went to look at the tree and ran into our bedroom and exclaimed with glee, “Santa came! Come look at the presents under the tree!” His large open eyes, the excited inflection in his voice, his open body language. Thank you for these merry blessings.

Talk To Me: Helping Our Little One Learn to Communicate

“Uuuuuuuuuur Ahhhhrrrrr Uhrrrr Ahhhhhrrrrr Aaaaarhg…”

– Chewbacca

After taking T to the potty recently, he pulls up his underwear and blurts out matter of factly, “Oh my God, look at his butt. It is so big!” I shouldn’t have laughed, but I did. I’m not sure where he picked this up. Maybe it was from a song lyric. He better not have been talking about me!

To think that three years ago, we were anxious about whether or not this kid would talk. These days, he talks in sentences, has a growing vocabulary, a descriptive imagination, and unfortunately, he’s also picked up a potty mouth from school (more on this in another post!).

When we first adopted T, his medical history stated that he had “global delays” at birth. After we received his prognosis of at-risk FASD, we obsessed over it and read up as much as we could about it. One symptom common among FASD children is a delay with speech and language development.

We knew from our assessment with the developmental pediatrician that T was supposed to be able to say more words than he was doing so at his developmental age. That didn’t help our anxiety.

I was on parental leave for the first 30 weeks that T was with us and his speech was one of the areas my hubby and I focused on. Due to T’s prognosis, we were blessed with access to developmental and speech therapy services from Surrey Place. Looking back, these services taught us so much about how to help T develop speech and language skills.

Today, while T has a few challenges he struggles with and that we are working through, speech is not one of them. And we acknowledge this is a blessing that not all children have and we know that T will have – and is already experiencing – learning challenges at school.

While my hubby and I are by no means experts on this subject, we are sharing the important lessons about children and communication that we’ve learned from T:

Playing is the Best Way to Learn

I always looked so forward to the bi-weekly visits from T’s developmental therapist A and speech pathologist C. I had no idea what to expect in these sessions and it ended up being all about play.

They brought an array of toys that encouraged turn taking, choice making, and vocabulary building – such as wooden puzzles, stacking blocks, shape sorters, and bubbles. They even gifted T toys they thought were appropriate and helpful to encourage language and play skills development.

A and C taught T – and my hubby and I – how to encourage the development of speech and language skills through play and to inject language and vocabulary in everyday activities. One simple way was to describe and identify what we were doing and the related objects within the current context.

When T was having fun, he became most receptive to learning. When he got tired of an activity, we moved onto another one. Mundane activities – like going for a walk, to play in the park, snack and bath time – became an opportunity to have fun and to teach and to learn language.

Start with Non-Verbal Communication

We learned that receptive language is the ability to understand words and language and expressive language is the ability to use language through speech or other means, like sign language.

While T was not talking yet, he was absorbing, learning and growing his understanding of the world around him. That was why it was important to talk to him, describe things to him, read to him, sing to him, and to play with him.

We learned about the importance of non-verbal communication – such as a making eye contact with others, learning how to finger point, and simple sign language – as a way to build his language skills.

For example, when we asked T to make a choice – e.g. “Red socks or blue socks?” – we’d first get him to make eye contact. Eventually, T learned to point at his choice. “Green socks,” we’d say back to him.

Another simple sign language skill was teaching him how to gesture “More please” with his hands when he wanted more food. When he gestured, we’d repeat out loud to him, “More please,” until he one day learned to say “More please” by himself.

Attend Community Programs

Community programs for preschool children help immerse kids in fun and play-based learning environments rich with language. Even better, they are often free and a great way to connect with other families and help remedy the boredom of being alone with a non-communicative kid.

Some of my most treasured memories from my parental leave was taking T to attend toddler programs, which included family programs offered at our local library and early literacy programs offered at “Early Years Centres” (pictured above) through the municipal government.

Surrey Place offered a wonderful Musical Morning program on Thursdays that I attended in Fall 2016. There were a dozen parent and tot pairs who attended regularly. The other children had down syndrome. This drop-in program ran for two hours and we attended the last hour. It consisted of play time and 30 minutes of guitar songs played by a musical therapy student.

Although T had a hard time sitting still for anything, he enjoyed the music program a lot and would often go up to the student to touch and poke at her guitar.

I have a picture of T from one of the mornings. The group was playing with a rainbow parachute. T was sitting on the mat and looking up mesmerized at the parachute as it ballooned in the air above him. My feelings of gratitude for those mornings always come back to me when I look at that picture.

Read, Sing, and Laugh Often

Reading and singing became a ritual before bedtime and provided enjoyable opportunities to infuse language into T’s environment.

A and C bought T a series of wonderful baby board books, including the First 100 Words by Roger Piddy and Baby Genius word books. As I work for a library, I am surrounded by books. Our family and friends also regularly gift T with awesome books for his personal library.

One of my favourite memories from when T was younger was when we’d spend time every day going through his First 100 Word books. There were 9 images and words per page. I’d ask T to point at specific objects. I remember that jubilant feeling the very first time he pointed out correctly all the words on the page. And the first time when I pointed to an image and T would utter out what the object was – like “ball,” “cat” and “dog.” It was like he had won an Olympics medal.

My hubby introduced lullabies into T’s bedtime routine. After reading books one night, A picked T up and started singing to him as he cradled his then-so-tiny body. In the early days, we sang the same three songs in this order: “Frere Jacques,” “You Are My Sunshine,” “Rock A Bye Baby.” Eventually, we diversified our setlist. Favourite songs included, “Itsy Bitsy Spider,” “Row Row Row Your Boat,” Skinamarink,” and “Wheels on the Bus.” As we became more confident, we added dance movements.

We’ve now graduated from board books into longer picture books and T is not as interested in lullabies. And there are evenings when I’m exhausted and the thought of reading the lengthy Green Eggs and Ham by Dr Seuss make me want to poke my eyes out. I actually had to hide the Dr Seuss books at one point, because I found them so annoying to read. But books and songs at bedtime were so important to helping T build his vocabulary.

Celebrate Every Victory

I remember the early days of speech therapy, whether it was one of the bi-weekly home visits or half-year checkups at Surrey Place. We’d do an inventory of how many words T knew, whether it was reported by me or through an observation during the session.

I remember the early days when we celebrated his ability to point his finger as an intentional way to communicate and how that gradually transitioned into him uttering “Yat?” as a way to ask “What’s that?” to the day he actually uttered “What’s that?”

Or when he would make incoherent sounds and we’d still jot it down as a word in his vocabulary. Because those sounds eventually became coherent words.

Every sound, coherent or incoherent, was celebrated. I think, and would like to think, that he knew how happy and proud and excited we were at his growing vocabulary.

And soon, we stopped counting how many words he knew, or counted the number of words he was able to string into a sentence. It just became a natural part of T’s skills and abilities.

When I think about the daily struggles we have about other aspects of T’s development and this prognosis that looms over us like a dark stinking cloud, we try to shift our thinking to the gains he’s made in other areas of his life – such as speech – and it gives us renewed optimism to step forward with confidence and reassurance that things will be ok.

The Prognosis

I can be changed by what happens to me. But I refuse to be reduced by it.

— Maya Angelou

It was just a little over three years ago when we received T’s prognosis. I remember foggy bits and pieces from that morning. But there are two moments that are still crystal clear in my mind – one that continues to haunt me and one that fuels me.

It was a late summer 2016 morning when we first visited Surrey Place to meet with a developmental pediatrician. I have never heard of this organization before, until we received a referral from our family doctor, who suggested that we get T looked at, because of what we know about his medical history after adopting him at 15 months.

I sat in the lobby and looked around at the other parents and children. There was an excited energy in the air. Dr. L arrived. He was accompanied by a colleague and I recall two medical students may have also been with them.

We were escorted into one of the many rooms in the building and I sat on a leather couch. T, then 18 months, had just become comfortable with walking. He explored the room and they then brought out toys for him to play with, while they observed him and simultaneously asked me questions.

I felt tremendously at ease with them. They were professional, friendly and so good with T. The conversation did not feel awkward and they asked me so many questions about what T was able to do and not do. I don’t remember a lot of the questions, but recall ones about his speech and how many words he could say and a question about how many blocks he could stack.

I had a copy of T’s file from the adoption agency and I disclosed as much detail as I could about his medical history. It was one specific detail that was of particular interest to them and why our family doctor referred us: T’s mother reported that she drank during the first three months of her pregnancy, as well as taking hard drugs, like crystal meth, throughout her pregnancy.

They also examined and scrutinized T’s face very closely, looking at his upper lip in particular. I would later learn this was because they were looking for specific facial features. They then measured his height, weight and head circumference and then plotted them onto a chart and quickly determined what percentile he measured at.

Then the prognosis arrived. Based on T’s medical history, what they observed, and the answers that I provided to their questionnaire, Dr. L. stated that T has a prognosis of at-risk fetal alcohol spectrum disorder (FASD, for short).

My husband and I did not know a whole lot about FASD at that time, other than that it was something we specifically said we’d avoid when we were going through the adoption process. My mind flashed back to a brief conversation I had with a former manager a few years earlier. She told me to avoid FASD, because she had friends who adopted children with FASD and it ruined their lives.

Those moments flashed through my head, while I stared at the two professionals looking at me. I smiled, because I wanted to stay strong. I nodded my head, because I wanted them to know that I was paying attention. But I did not understand what was going on. I had so many questions, but I did not know how to ask them. I felt like I was having an out-of-body experience and I just wanted to scoop T up and go back home.

I genuinely don’t remember a whole lot from that morning. I’m not sure if it’s because I blocked it out of my mind or if it’s because parenting T has worn down my memory. But I remember two specific moments from that discussion with Dr. L.

The first – A prognosis is just an outlook. He is too young to be properly assessed and diagnosed until he is older. At that moment, because T was still young, we would not notice a lot of difference between him and other children. But as he gets older, Dr. L cautioned that we may start to see a widening gap between his abilities and those of other children.

The second – Dr. L suggested that we enjoy T’s childhood, because it flies by very quickly.

The first words of caution have haunted me ever since that morning. The second words of wisdom have fueled me to focus on the positives.

My husband and I knew oh so little about what FASD was at that time. But from that morning on, we were going to learn a lot, experience highs and lows, and yes, we were going to enjoy T’s childhood.