Tate's Story

Written by Gaja  – Proud Mom

Tate is my 3rd son,  born in Toronto (Go Raptors!!!), at a hefty 9lbs.   At birth he was only diagnosed with blood incompatibility jaundice and was under phototherapy for 3 days.  He seemed otherwise healthy.  Having my other 2 healthy and active sons or because of my time devoted to them I was not concerned at all, however, at around 6 months I noticed that Tate’s eyes were crossing and he seemed late in meeting some of his milestones and seemed oblivious to us calling his name. His grandmother suggested Autism.  He was a happy and content baby and nursed frequently and loved his food. But strangely kept his mouth open more often than not and stared up in space.  When he saw his ophthalmologist at 9 months, the Pandora's box opened as he suggested this may be neurological in nature and/or genetic. 

 

The next 3 months were filled with more appointments and growing anxiety on our part for what we would be facing and also a period of intense grieving and growing acceptance.  Tate would have bilateral strabismus repair which was the first of 11 surgeries to date.   Next Tate was diagnosed with both conductive and sensory neural hearing loss and wore hearing aids for 18 months after which he was within the normal hearing range but continues to struggle with fluid and negative ear pressure and has had 5 sets of myringotomy tubes and his adenoids removed. 

 

We soon realized that life would be filled with medical appointments, therapy and hospital surgeries and although I was ready to embrace this new chapter in my life with faith and fortitude, it took a toll on my marriage and I was separated by the time Tate was just over 18 months.  Since then I have been on this journey with Tate along with his very supportive brothers, our extended family and the “village” that holds us all up and keeps us moving ahead.  Tate received a great deal of early intervention, including PT, OT and SLP which I highly recommend. He has been wearing AFOs since before he walked and continues to do so and I highly recommend it as they align not only his feet but also, ankles, knees, hips and back and I know it makes a difference in his posture and gait especially with his hypotonia and risk of scoliosis.   On Tate’s 5th Birthday Tate gave me the most precious gift.  Yes that’s right! On HIS Birthday, his gift was to say for the very first time “I love you mommy”.  It took my breath away! 

 

 

Yes, Tate was delayed in walking, talking, fine motor and gross motor and also had excessive drooling.  I made him colorful bandannas which he wore until he was 7 years old.  If I could say anything to parents with a new diagnosis, it would be that in the case of Tate he walked, talked and stopped drooling and gained control in his daytime toileting and was wearing underwear by just over 11, but is still diapered at night.   Those multiple exposures, the practice, the therapy, it really does work and one sweet day they just get it and the things they don’t will turn into new trials and triumphs. We celebrate every little and major milestone, progress is made but it’s just on a very slow trajectory.  He eventually stopped crying and having tantrums with every change in environment, transition from sleep to wake and vice versa.  Although his separation anxiety was through the roof for the first 5 years of school, it eventually and slowly got better and the 12 year old Tate is enjoying and learning at his level at school and participating in Special Olympics including basketball, track and soccer.  He now recognizes all the letters of the alphabet and some safety words like stop and simple sight words.  Tate loves his electronics, computer, ipad etc.  What an amazing world he gets to manipulate and succeed in.  Tate is crazy about all things hockey – is able to skate with an adaptive walker and the last 4 Birthday parties we rent ice at a local arena and play a real hockey game with friends and family wearing their jerseys – Hockey in July - we are Canadian after all - eh!  Tate loves singing and listening to national anthems in particular with the Canadian and US teams and watching sporting events.   With 2 older brothers, he’s been exposed to so many sports and loves horse back riding after concurring his initial anxiety to mount the horse. 

 

Tate was seen at Toronto's Hospital for Sick Children Genetics Department from 2 years old and was initially diagnosed with Sotos- like, then Sotos Syndrome without NSD1 gene mutation in consultation at the Sotos Conference in Vancouver. With new genetic options diagnosed with Malan syndrome/Sotos 2 at 8 yrs old with pathogenic NFIX mutation on Exon 4.  It was a relief but then also a  new concern because there just isn’t enough information about his future and each diagnosed expression can vary.  This is why research is so very important and we were happy to join the Malan Syndrome Patient Registry (CoRDS).   

 

Behavior challenges occur when transitioning to a non-favored activity and often come with colorful verbal expressions, falling to the ground and occasional hitting out.  Tate also had one significant case of elopement and was recovered thanks to a good Samaritan and local police.  He now is registered with the Vulnerable Person's Registry with our local police department and Project Life Saver and wears a tracking device. Tate met the DSM-5 criteria and was diagnosed with ASD, ADHD, Intellectual Disability (moderate to severe) and Anxiety and now after 3 years on the waitlist, our family is waiting for an Autism Assistance Dog Guide through the Lions Foundation.  I carried him in my arms until he quickly grew to 90 lbs at 10 yrs old and his long limbs hung down my body – sometimes he holds on like a little monkey. He's now just taller than I and his educational assistants that work with him at school.  Off the charts!  My back just won’t let me do it anymore, so he will still sit on my lap and enjoy deep pressure and rocking on the couch.  We hope a larger dog will help us with those moments when he just refuses to get out, up and go and give unconditional love and deep pressure when needed not to mention foster a healthy attachment and safe grounding. 

It was no surprise to me that Tate was formerly diagnosed with ADHD, after all, for 10 years I had mastered a formula; keep him busy during the day so he could sleep well at night.  Once he was up on his feet - around 2 1/2 years old, he just would not sit or stand still which required a hyper vigilance all the time like watching a toddler for what seemed like forever.  It took 2 specialists and our family doctor to convince me that a trial of stimulant medication was worth attempting.   My apprehension stemmed from not wanting to change what I thought I knew and also not wanting to change the essence of Tate - I was worried about the snowed effect.  In the fall of 2017 we trialed a low dose of Biphentin which is long acting and slowly releases into the system.  Within days I noticed he sat still at the stairs while I looked for his shoes.  I use to have to hold him with one hand while I reached out for the item with the other hand.  The school staff were fabulous to track his behavior and noticed a positive change in his ability to focus at a learning activity and increase his participation.  It also helped with his response to re-directive strategies. Perhaps the most amazing and surprising benefit was that his communication improved.  It was as if this drug gave him just what he needed to calm his brain enough to form better and more cohesive sentences.  It's been nearly 2 years and he continues on a daily low dose and he has seen more and better gains at school, improved socialization and is still full of energy and pep - so the formula still holds true, keep him busy during the day so he sleeps well at night.

 

Tate is a genuinely cheerful, strong, determined young boy and full of energetic enthusiasm.  When the Toronto Maple Leafs lost against the Boston Bruins in the NHL playoffs he was quick to swing his cheering to the best team, at least this year...

Now a preteen,  I wait to see what puberty will bring – after all to him they are all his “girlfriends”  to which we try to remind him she’s your “good” friend Tate!

 

He brings us so much joy and reminds us to look at the world in a fresh, simple and innocent way.

We are happy to join the Malan Community!  

 

DISCLAIMER

The information provided on this website is not intended to be a substitute for professional medical advice. No images on this site may be used without the written consent of the Malan Syndrome Foundation.

CONTACT US
  • Twitter Social Icon
  • Grey Facebook Icon
  • Grey Instagram Icon
SUBSCRIBE FOR EMAILS

Use of this website constitutes acceptance of the Privacy Policy and Terms of Use.

© 2020 Malan Syndrome Foundation Inc. All rights reserved 

PrintBlack_1.5in_Silver.png