“What does heaven mean?” T recently asked me during bedtime.
I believe in God but am apprehensive about organized religion.
I had a hurtful experience with church in my teen years but I still believe all paths lead to God or however one calls them.
I believe that those who politicize or weaponize religion cause the greatest evils in our world.
I will encourage T to keep an open mind about religion as he grows up and to learn about all religions. He can decide what works for him.
But in the meantime, I had this pressing question from my inquisitive 7 year old – and my mind was half passed out.
I gave what I felt was a balanced answer: “Some people believe that heaven is a place you go to after you die.”
He sat in silence for a few seconds and then replied in typical T style, “What the hell did you just say?”
I had to stifle my laughter because I didn’t want to reinforce that kind of language we’ve already been struggling to contain.
At least he knows the opposite word for heaven!
Speaking of death, T’s fascination with cemeteries has resurfaced. He always notices them during our local drives and road trips.
During our recent drive to the Bluffs, we passed by a few cemeteries and sure enough, he spotted them and asked what they were like inside.
I reminded him that prior to the pandemic, he had visited my Pa’s grave many times. But he clearly forgot about these visits.
He asked if we could visit the cemetery where he was buried and I said we’d to take him this weekend.
During bedtime this week, he asked me interesting questions like: did all tombstones have RIP written on them; what bodies look like underground; and whether someone will come clean his tombstone when he’s dead and buried.
It was not exactly the most upbeat conversation, and I felt bit sad talking about it, but I answered each question candidly, because it’s important to validate his thoughts.
The hubby wasn’t concerned when I spoke about it with him afterwards. He thinks T is being curious.
During bedtime last night, T asked me in his hilariously blunt way, “So how many more days until we visit your dead Papa?”
As with everything in our life with T, you gotta laugh at these unintentionally absurd moments.
I told T he would’ve loved my dad, because he was kind and caring. Similarly, I think Pa would’ve been very amused by our T.
During a work call, I got a call from T’s daycare teacher. She was not her usual calm self.
She said an older student had ran off the bus during drop off and pushed T against a wall. She had to shield him from further harm.
A few hours earlier, the hubby and I received an email from his CYW letting us know the day before T had bothered a younger peer on the bus and the mother called the principal very upset.
It was a Friday afternoon and all I wanted was to get to the weekend.
My mind was now sandwiched tightly between two extremes of emotions: one of disappointment and one of upset and concern.
This was a week ago. The past week was challenging at home and school.
One of the present challenges we have with T is his impulsivity and emotional regulation – two things that create a difficult combination.
He says the first thing that comes to mind and when he’s triggered or disregulated, he can say very inappropriate things. Lately, it’s escalated to verbal threats – to us, peers and teachers.
According to T, the older peer on the bus was bothering another peer and T told him to stop and that’s when the peer got upset.
I’m aware there are two sides to a story and that T’s attitude can escalate a situation. Nonetheless, while I have empathy for the peer, physically hurting someone is never ok and we’re working with the school to address the situation.
We are fortunate to have understanding teachers at school and daycare. We advocate on T’s behalf; we don’t make excuses for him but we frame his behaviour as a result of his disability.
The hubby and I are aware that people may not always be understanding. If his behaviours continue as he gets older, they could lead to suspensions and social alienation.
We do our best to remind T to act with kindness and to teach him strategies – like walking away or asking a grown up for help or quiet time.
Last Monday, we had a call with our FASD service coordinator – to look into funding for potential Special Service at Home.
She first asked us “Can you tell me about some of the recent wins that you had?”
The bus incidents were fresh on our minds. But we answered her question, including talking about his recent successes with reading and math.
It was a great exercise, because it allowed the hubby and I to take a step back to refocus on the big picture.
For other parents going through a similar journey and experiencing the same frustrations, I can’t emphasize enough the importance of doing this.
Thankfully, this past week was a short one and we had one goal in mind for our Easter long weekend – to reset, Daddy, Papa and T style.
Sunday was gorgeous – cool but bright and sunny – and we went for a very satisfying 2.5 hour hike at Mono Cliffs.
T is in his element in the outdoors. He had lots of space to burn off the candy he had instead of breakfast that morning.
The outdoors calm him down; it calms all of us down.
Our hike was a wonderful way to cap off a calm, pleasant weekend at home.
As I watched T stare at the cliffside views and the clear waters, I reminded myself to not let the challenges get to me.
It’s important to acknowledge them, to take them seriously, but to also let them go and move on.
T is a great kid. He is a work in progress – but aren’t we all? He’s made great gains and he will continue to make gains.
And the battles? We will face them as we always have – one at a time, together, Daddy, Papa and T style.
I spent last weekend filing documents that have piled up over five years.
Being a parent is a full time job on top of a job.
Being a special needs parent is like having an extra job on top of parenting – managing school and service appointments, taking your child to appointments, keeping track of reports and doing your best to follow up on recommendations.
So much paperwork has piled up from the last five years from school – e.g. IEPs, report cards, T’s lovely work – and medical and community services – e.g. therapy reports, T’s recent diagnosis.
I’m usually organized, but with the pandemic and the added job of managing Ma’s appointments, I’ve had no energy to organize the clutter.
Last Saturday, I hunkered down for an afternoon and sorted through the mess.
And this was the result:
T’s work from preschool and kindergarten were sorted into their own bags and binder. It was a joy seeing his artwork and scribbles/printing – reminding me that progress is steady.
I filed reports from elementary school – IEPs, safety plans, report cards – into one binder, in chronological order, because I’m anal retentive.
His most important documents – adoption papers, our wills, his therapy and diagnosis reports – were sorted into a filing accordion ($3 from the dollar store!) so they’re in one place.
And the most therapeutic part – I ended up with a pile of documents I could put in the shredder!
Celebrate and Remember Every Milestone and Hurdle
It was therapeutic to look back at the things that consumed our thoughts.
This was a goals document we prepared for a meeting with T’s developmental therapist, a service provided before he started pre-school.
It was humbling to see how our use of language has evolved. Our perspective of “bad” has changed into one that recognizes these are challenges.
This was a growth chart his developmental pediatrician provided during his first assessment that resulted in a prognosis of at risk FASD.
It’s funny to think back about how I obsessed over how his height and weight was compared to the average peer. At some point, I stopped worrying.
It’s like how we are now motivated to help T move up his reading levels – but also recognize he will do so at his own pace.
This “FASD: Strategies Not Solutions” booklet was provided during a parenting workshop hosted by the Children’s Aid Society.
I put it on my bedside table as something to re-read over the coming weeks.
The best part of the filing exercise was coming across so many wonderful photos from T’s toddler and preschool years in Montessori.
He was just starting his school experience. He was so small and innocent. Things seemed so much simpler back then.
Then I stumbled across the letter from the administrator of the Montessori telling us that T was not invited to apply for the Fall term – what would’ve been junior kindergarten – because of his challenging behaviour.
I didn’t feel the rage I felt when the incident first happened. I felt peace and gratitude.
His school life continues to have ups and downs – but that incident redirected T to public school and he is all the better because of it.
So I’m sticking my tongue out again at those stupid Montessori administrators. Shame on you.
It was very satisfying to get the filing work done.
That evening, the hubby, T and I enjoyed a long walk. On the way back home, we stopped by the local Vietnamese restaurant and picked up Pho and spring rolls as our weekend treat.
Special needs parenting often leaves caregivers feeling perpetually foggy headed.
Thanks to amazing colleagues, I checked out of work. I told family to e-mail me about urgent issues, but I tuned out everything else.
I slept very well – passed out before 11 and woke up at 9. The 10-hour sleeps, fun at the pool and beach, and plates of fresh tropical fruit helped clear the persistent fog in my head.
Spring Break was an important reminder about self care and refilling my cup to help others.
I returned home with renewed energy for T.
I spent last weekend organizing and filing away documents related to T’s school and community services that have piled up over the past year.
It helped the hubby and I prepare to regroup with T’s FASD service coordinator on Monday.
It had been several weeks since they provided T’s FASD diagnosis and the hubby and I had a chance to digest the report and recommendations.
We had a great discussion focusing on what we feel are the priorities for T’s immediate future:
Behaviour Support – Now that T’s aged out of behaviour therapy services with Surrey Place, they recommended another organization’s 12-week parent-child program that may be a fit. There is a waitlist and we asked if the coordinator could help us with the intake process. T has made great gains and we want to help him build on his success.
Physical Recreation Activity – We’re gonna register T for swimming lessons this summer and are looking at basketball team activities to build on his teachers’ observations of how much he loves it at school and to give him opportunities to build teamwork skills. The coordinator let us know about potential supports that may be available for these activities.
Respite Support – One recommendation in the diagnosis report is the importance of self care for the hubby and I. The coordinator is helping us look into potential respite services.
Social Connection Opportunities – We also told the coordinator it was important for us to build a community of similar aged peers for T who are on a similar journey as him.
It was very helpful to start to collaborate with the service coordinator to identify a plan for T and we are reconnecting again in a few weeks.
Meeting with the coordinator reminded me about who we work hard for every day: our amazing T.
It was one of those clear-headed moments of gratitude and optimism – and I savoured it, because dark clouds and fog are always on the horizon.
During recent moments of stress, I am thankful to be able to mentally escape to recent memories on a calming beach unplugged from reality.
We’re blessed T has a super organized teacher and a dedicated Child and Youth Worker.
Having an Independent Education Plan (IEP) is helpful. It doesn’t mean that less is expected of him, but that he is set up for success.
Grade 1 has had ups and downs, including: a period of disruptive behaviour, his CYW’s unexpected departure, and adjusting to changes to his medication.
But as life with T continues to show us, when we persevere, we get through the rough patches.
As we entered the second half of the school year, I feel hopeful we’ve settled into a positive rhythm.
His new CYW is great. She is experienced and has kept routines that T’s previous CYW used.
T’s teacher’s extra homework is making a positive difference. It’s part of our evening and weekend routine and we see a confidence for academics developing in T.
The school was also able to fast track an OT assessment for T to help identify the cause of his disruptive behaviors – such as “digging” and “thrashing” movements and “buzzer sounds” – and to identify strategies to reduce or replace these behaviors.
It’s normally a two-year waitlist but he had his first in-class assessment this week, two months after the request was submitted.
I feel grateful for the school’s effort, because it demonstrates they understand T’s behaviours aren’t “bad” or intentional, but rather because of a disability – including impulse control issues.
Gym class has also been a struggle for T. He is not keen to participate and for his recent report card, his teacher wasn’t able to give him a grade for “Dance,” because she didn’t have any evidence.
During the week before Spring Break that T had to stay home because of a cold, his gym teacher asked if we could complete a dance assignment with T: work with T to create a dance to The Gummy Bear song with different movements that show opposites – e.g. up and down.
I joked with the hubby that it was a fake assignment and the teacher was fucking with us.
It was the last homeschool assignment we had to do with T before Spring Break and we filmed it 8 hours before we woke up to leave for the airport.
While it was not Britney Spears level choreography, T did a super cute job.
After we submitted the video separately to T’s teacher and his gym teacher, his teacher e-mailed to let us know she will suggest to T’s gym teacher that similar future assignments can be completed at home, where T is more comfortable.
My initial reaction was, “Oh God! Please don’t punish us like this!”
But I then realized how amazing it was to have a teacher willing to work within T’s comfort level to maximize his success.
The hubby and I gladly agreed and thanked her for her inclusive and accommodating approach.
On the Sunday before return to school, the hubby worked with T to make two birthday cards for classmates.
His teacher provides a monthly calendar that includes student birthdays as a way to encourage classmates to think about others.
I remember how happy T felt last month when his classmates created cards for him so we reminded T about the importance of paying things forward.
The rainbow cards he created, pictured at the top, were lovely!
This past week, I celebrated my birthday and got my own homemade cards from T. I put them on my home office desk.
I don’t wish for much during birthdays nor need anything other than my loved ones’ happiness.
Although this homemade carrot cake by the hubby was delicious!
T had an amazing return to school after Spring Break. 5 out of 5 great days of following routines, participating in class and completing his work.
That was the best birthday gift I could ask for and I hope his positive momentum continues.
Whenever we daydreamed about our resort getaway during the pandemic, the hubby and I always said we’d take advantage of the resort childcare services.
But we never used the service, because the truth is, we enjoy having fun with our guy.
As many parents will tell you, it is truly a blessing to experience the world through the wonder-filled eyes of a child.
Despite some hiccups, we had an amazing trip and would’ve been sad to experience any of the moments without T.
The last seven days have been an escape from reality, the grind, stress and responsibilities. I am super thankful for the memories we created.
Some memories were unfortunate, such as the hubby getting a stomach bug that kept him in bed for two days in the middle of our week away.
During those two days, I was a single parent and there were moments that felt more like a chore than a vacation.
On the second day, T was down. He said that he was very sad that his daddy was sick. So I worked hard to take T’s mind off his worries.
We spent an extra long time by the waterpark and pool and we took the resort trolley for a ride to explore the grounds.
During dinner, I watched T stuff his face with spaghetti in meat sauce – he had this for every lunch and dinner – and I felt that inner joy that comes once in a while; that swelling of gratitude that overwhelms my emotions.
I teared up as I stared at my life in front of me: I didn’t need to escape. Thanks to life’s mysterious ways, this wonderful boy found and rescued the hubby and I six years ago.
The waves keep coming at you every day, even on days when you’re not ready for them.
Let’s not even talk about the waves we all had to endure during this pandemic!
Some days, you ride them. Some days, you even coast wonderfully. Some days, you get knocked over onto your ass.
But you get back up and you do it again.
You learn to surf and ride the crest of the wave. Because it’s worth it for the high and joys of facing this life head on with your child.
The alternative is to stay away from the beach and to miss out on what this beautiful imperfect life has to offer.
“I get back up and I do it again,
I get back up and I do it again,
I get back up and I do it again,
I get back up and I do it, I do it again.”
– “Why Do You Love Me?” by Garbage
I’d be remiss and insincere if I said this trip has been completely relaxing.
T’s had numerous irritable moments – filled with loud outbursts of telling us to “Shut up” when he wasn’t getting his way; often in public and we had to bite our tongue to avoid escalating the situation.
Last night, during one of his outbursts in our room, I had enough and told him to stop using rotten and rude language, because it was ruining the mood of our vacation.
I didn’t like telling him that nor did it feel good to say it, but it needed to be said. Cue the waterworks and crying. I walked away and went to bed.
This morning, T woke up and climbed into bed and snuggled with me for 30 minutes.
After breakfast, we went to the waterpark and played in the wave pool for an hour, splashing and laughing.
At one point, he said, “I love you.”
I smiled and hugged him and said, “I love you” back to him.
Then we went back to our room to change and relax in the air conditioning before lunch.
“I get back up and I do it again. I get back up and I do it again. I get back up and I do it again. I get back up and I do it, I do it again…”
The alarm went off at 4 am and T shot out of bed like a cannonball. He was ready to leave for the airport before the hubby and I.
I had been up by 3 am after two hours of sleep. I couldn’t sleep from both excitement and anxiety.
We had booked this family trip to Punta Cana, Dominican Republic back in September.
The thought of a getaway gave me the motivation to get through the ups and downs of the last few months.
When the Omnicron wave hit in December, I gave up hope our trip would happen. Then things started opening up again.
But I didn’t want to celebrate or talk about this trip until our plane landed in fear I’d jinx it from happening.
The week leading up to our trip was a gauntlet. Four busy work days mixed with three medical appointments for my mom and the unexpected curveball of T being sent home with a runny nose and cough Monday morning.
He was asked to stay home from school all week. Not only did it add homeschooling to my already packed week, but the anxiety of missing out on our trip stressed me out.
Thankfully, he was not sick with COVID and his cold went away two days before we left.
Friday was a long travel day and T was off-the-wall excited.
We arrived before dinner and the sun was setting. That didn’t stop T from wanting to squeeze a short swim in before the pool closed.
Having had weeks of frigid Canadian winter weather, jumping into a pool in nothing but a bathing suit was a treat!
The last two days have been wonderfully uneventfully relaxing.
We slept in till 9 am every day, had breakfast, spent the morning at the amazing waterpark in the resort, chilled out and napped in our room after lunch while T played on his Switch, and spent the late afternoon at the beautiful beach.
I didn’t realize how mentally and physically exhausted I was until I didn’t have to think about or do anything other than let go of everything and relax.
I know these seven days will fly by and I am going to focus them on doing absolutely nothing but having fun with our T.
I thought about this expression by French philosopher Voltaire after T broke his four-week streak of perfect spelling tests.
T’s teacher recently introduced Words of the Week; six words given on Mondays that he practices for a test on Fridays.
T crushed the first four weeks and we posted his tests proudly on our fridge.
Last Friday, he broke his streak and came home with a 5 out of 6.
The husband gave me a faux sad look and I told T he still did great and we posted the test up proudly with the others on the fridge.
The moment made me think of this video.
Writer Dan Heath muses that we often obsess on things that don’t go well and he encourages us to obsess instead about things that are going well and to scale up these bright spots.
I’m gonna keep it real. The following Saturday morning, I walked by the fridge and looked at that damn word “Us” that T misspelled.
It irked me because spelling was one of the bright spots in T’s up and down school journey.
Thanks to his teacher’s creative ways to encourage kids – such as creating a keychain of words to practice in a fun way – T is motivated to do well.
He even used it as a bedtime delay tactic last week when he got out of bed and said he needed to practice his words.
As his parent, I want him to have many chances to feel good about school and himself.
Then I realized how silly I was being. T was doing well in spelling and the hubby and I are gonna build on his progress and try to spread his enjoyment and motivation into other areas of school, such as reading.
And I walked away from the fridge.
Don’t get me wrong: doing well on tests is important. But I want T to focus on doing his best, learning and growing, rather than perfection.
The latter is focused on a fixed state in time; the former is focused on continual change and progress, also known as growth mindset.
As life with T reminds us, every day is a new chance to try again.
This Monday, T’s teacher announced that Words of the Week would be a review of the 30 words from the last five weeks; she would pick six random words for the test.
The gauntlet was thrown. Our family’s honour was on the line. Cue Rocky training music.
Jokes aside, we kept it chill with our no pressure approach of practicing two nights a week, including before the test.
Then we put it out of our minds and relaxed.
This past week, we also made adjustments to his medication – increasing the afternoon dose of methylphenidate – and as anticipated, there were a few bumpy moments.
By Friday, we were ready for the weekend.
As the hubby and I unpacked his school bag last night, we saw his spelling test: 6/6!
We cheered loudly and told T we’d celebrate with his dinner of choice. He picked McDonalds.
There was another surprise in his bag: a beautiful painted art he made in class (pictured up top).
I held it up against the glow of the golden hour sun and the moment felt like a bright spot in our week.
Every bump along the way from Monday to a Friday vanished into the past.
We complemented T on his work and he smiled and shouted, “It’s a masterpiece!”
Reading to T as he rests his head on my shoulder is a joyful way to unwind.
We’ve been reading at night with T since we adopted him at 14 months.
As noted by the American Library Association, young kids that are frequently read to are more likely to recognize letters, have word-sight recognition, and understand words in context.
More recently, it’s nice to see T becoming more active in asking questions, retelling bits of the story and occasionally asking to read along.
In the last year, we are focusing hard on building his reading and decoding skills.
We’re thankful his teacher gives daily reading homework. Combined with bedtime reading – where there is no expectation other than to listen – we will slowly grow his skills.
As a follow up to my posts in 2020 and 2021, I’d like to share a selection of bedtime stories we’ve enjoyed in the past year.
It’s Okay To Be Different by Todd Parr
Todd Parr’s books are filled with positive messages that celebrate diversity and his joyful art reminds me of Keith Haring’s work.
This book was one of the weekly books T borrowed from his school library. I love the message that affirms to kids – with images of kids of all ages, sizes and abilities, from different backgrounds and family compositions – that it’s okay to be different!
The last time we read this, T asked to read. With the exception of a few words, he read it cover to cover on his own. The best part? One page stated: “It’s okay to be adopted.”
This book is more funny than scary and is about Jasper Rabbit who loves devouring wild carrots, until they start stalking him. Is he losing his mind or is he being gaslit?
Beautiful illustrations bring this comical story – and its twist ending – to life!
Clifford’s Good Deeds by Norman Bridwell
I discovered Clifford books when my family immigrated to Canada when I was eight and it’s been fun introducing them to T.
T owns a collection of the first six Clifford books. He loves the idea of having a big red dog. The story about Clifford doing good deeds that go awry was particularly amusing to him.
Bon Voyage Mister Rodriguez by Christiane Duchesne
As T gets older, he is naturally asking bigger questions about life, such as death.
Books provide kids with safe spaces to explore hard topics. This story of Mister Rodriguez, who is only visible to children and sickly animals, is a surrealistic story that leaves things open ended for kids to interpret what happens after life.
Here We Are by Oliver Jeffers
T and I discovered the charming work of Irish writer and illustrator Oliver Jeffers through one of my dearest friends, who gifts T a new Jeffers book on every birthday.
Gifted to T for his 6th birthday, this story is narrated by a dad to his newborn about what they need to know about life.
As a parent, it made me realize just how much info there is to unpack for a little child. For T, he loved the quirky illustrations and the fun facts about space, deep ocean animals, and different cultures.
Happy Birthday, Big Bad Wolf by Frank Asch
Reading inspirations come from all places. This little book came with a McDonald’s Happy Meal, so it’s literally a tiny sized book.
It tells the story of the Little Pig who wants to throw a surprise party for the Big Bad Wolf, despite his parents’ hesitation. It provides a lesson about giving people a fair chance to prove themselves to others.
The Day the Crayons Quit by Drew Daywalt
The best children’s books are the ones that can be enjoyed by both kids and adults.
This wonderfully-illustrated book is about a boy named Duncan who receives letters from the crayons in his crayon box, either lavishing appreciation or complaints about his use of them. Duncan’s response is truly inspired.
Books are great tools to educate kids about important social issues in relatable and non preachy ways. This story highlights the plight of Indigenous communities in Canada that do not have access to clean drinking water.
T loves to play at the sink – at home and school – for prolonged times, because he enjoys the sensory input of water. I try to balance indulging his play while guiding him to not be wasteful.
Change is hard for kids. It was heart wrenching to see T process an unexpected change this week.
Change is harder for kids such as T.
If you hang out with the hubby and I, you’ll notice we give T ample warnings – 10, 5, 1 minutes before we move to the next activity, especially if T is currently doing a preferred activity.
It may seem excessive but sudden transitions often don’t go well with T, so we are proactive at using transitions to mitigate tantrums.
A few years ago, we learned about social stories and how these visual tools can help kids who struggle with social change.
In T’s case, his Montessori support created a social story to prepare him to move to a new classroom and teacher.
We read it several times the week before the change. He loved it so much it became a bedtime story staple for months after!
More recently, the pandemic brought a doozy of changes – lockdowns, virtual schooling, mask wearing, distancing – at an unrelenting pace. For adults, much less a child, it was overwhelming.
Big Unexpected Change
After recently receiving T’s FASD diagnosis, as much as we expected it, I didn’t want any more big life changes for a while.
Two weeks ago, T’s wonderful Child and Youth Worker, who has worked with T the last year and a half, let us know she got a new job and would leave very soon.
We were very happy for her moving to a dream role, but it still sucked because this was a huge loss for T. She was so good at her job and T and our family loved working with her.
My mind shifted into change management and how to set up the best transition for T.
Even though I knew it was a long shot, I asked if she could start her new role after Spring Break in four weeks. The break may give T a mental space between her and the new CYW.
Nice try but no cigar.
I asked if there could be a transition where both her and the new CYW worked together with T.
Thankfully, with the principal’s support, a new CYW was brought on to allow a full week transition with both CYWs this week.
The hubby, CYW and I discussed how we would break the news to T. We‘d tell T this past weekend and then she‘d tell him on Monday.
We kept the message simple: she’s leaving because she got a new job; T didn’t do anything wrong; she loves him; we will keep in touch.
We gave staff at T’s after school daycare a heads up, so they can be aware of and keep an eye out for potential behaviour symptoms.
While we were still sad with this change, it felt good to have a change plan in place.
When Best Laid Plans Don’t Go As Planned
The hubby and I broke the news to T on Sunday night after a fun afternoon of sledding.
He seemed to take the news ok and was glad to hear he would still see her this week.
Then the bomb dropped on Tuesday afternoon. His CYW let us know that it was her last day instead of the end of the week. It was a decision that was out of her and the principal’s hands.
Poor T was caught off guard like a deer in the headlights. He repeatedly told her, “But you said you had two more days.”
He cried during the bus ride from school to daycare. The empathetic staff let us know that he ran out into the hallway and around the school and was not himself.
Tuesday night was challenging. He was moody and emotional. During bedtime, he repeatedly talked about how sad he felt.
As a parent, I think it is important to let kids have the space and time to feel the fullness of their emotions.
But it still breaks my heart to see him sad. Processing big emotions with so little life experience as context is hard.
As I learned with change theory, there are four stages of acceptance – denial, anger, acceptance and commitment.
I see T experiencing the denial and anger stages right now.
Always Look Forward
The hubby and I are focused on guiding T forward, even though we feel the loss too.
The first day without his former CYW was expectedly up and down. His new CYW let us know he told her many times he felt sad.
On the bright side, we are thankful the new CYW is continuing to use the effective strategies that are already in place.
It also sounds like she has the savy and skills to recognize T’s boundary testing behaviour and to respond appropriately.
So despite the sudden and rocky change, there are many positives to focus on as we all help T move through this significant change.
Thankfully, we have a long weekend ahead and we are focused on relaxation.
Fingers crossed, we plan to have a curbside meetup with his CYW so T can have a calmer proper goodbye and both of them can have better closure, as I empathize this sudden change was difficult for her too.
Spring Break is around the corner and the three of us are using that as motivation to get through these next few weeks.
After all, if there is one constant thing in life, it’s change.
To meet the criteria of FASD, a minimum of three impairments must be identified.
The assessment identified T had significant impairments in executive functioning, attention and focus, and emotional regulation.
With these three impairments, and knowing T’s pre-natal alcohol exposure, the team concluded that T met the criteria for FASD.
Processing The News
The assessment team asked the hubby and I about what we thought and felt.
I got one word out and burst into tears. The rush of emotions was unexpected.
The hubby and I went into the meeting hoping for a diagnosis. To be frank, we would’ve been disappointed if there was no FASD diagnosis.
So on one hand, the diagnosis validated our home and school experiences from the last few years.
On the other hand, I felt deep sadness, because FASD is not an outlook anymore. This is reality – even though we’ve always known deep down.
My sadness was not about having a child with a disability. It was being reminded the journey ahead will be hard for our sweet boy.
A few weeks later, I am at peace with the diagnosis. The hubby and I agree this is ultimately a great and freeing thing for T.
The diagnosis does not change our unconditional love for T. It strengthens our desire to help him live his best life.
Having a diagnosis will open doors to continued supports in school and the community.
It provides a tool to advocate for T’s behalf and to educate others to understand his challenges from the context of a brain disability rather than behaviour.
The diagnosis will help us advocate for the appropriate interventions that address T’s challenges and help reduce the risk of potential secondary issues, such as mental health problems, disrupted school experience, drug and alcohol problems, and trouble with the law.
The hubby and I are still digesting the detailed assessment report.
The team provided many wonderful recommendations – for home and school life. We intend to action on as many of them as we can.
We shared a modified report with the school – with T’s lengthier personal history removed. We feel that being open demonstrates our genuine intention to work collaboratively with them to identify the best solutions for T.
It is very helpful that one of the recommendations from the report was that T will require significant supports in school.
I have so many questions in my head.
One key question is how and when do we share his diagnosis with T – in a way that empowers him rather than crushes him.
It feels overwhelming to think about it.
But as life with T reminds us on a daily basis, we can only take it a day at a time.