Jaxon Jesso

What makes Jaxon Xtraordinary to you?

As a single mother, life for the last 13 years has been a typical blind navigation that all parents travel when it comes to raising a child. Solely and also genetically, it became apparent that my little family – consisting of my son Jaxon, myself and our 2-3 cats always had over the years.. that we would inheritantly face the unknown challenges that come with a FXS diagnosis. Jaxon received his when he was 5. This was an answer to questions at the time and thankfully I had been blessed with more love then I knew what to do with when it came to Jaxon so I was prepared to move mountains. Prior to his formal diagnosis, he had been delayed for all traditional child milestones and taken out of the autism spectrum twice. He was eventually speaking by age 3 and hasn’t stopped to take a breath ever since. (Not kidding, he never stops chatting – even to himself!) We had many therapists in place, extra supports and extra curriculars intended for children with special needs but the actual diagnosis caught me out of left guard. So much to learn and understand but after diving deep into the historical, statistical and foreign to me medical findings… I still believed there had to be more I could do. That’s when I packed our bags and travelled 16 hours by plane, shuttles and a taxi into the deep jungles of Brazil to see a world reknown healer. Maybe it was the South American sun, maybe it was the cult like experience or maybe it was just my resolved commonsense that suddenly kicked in…but after allowing myself some time to grieve for him and my motherly hopes with biased dreams… We left there no worse the wear. It was the time in our life where I allowed myself the realities that could like ahead, the time to be appreciated no matter how challenging his life would no doubt be. Jaxon is now 13, taller then my 5’7 self and physically speaking, much the same as any one of the peers his age. In his grade 4 school year after already investing $30K into a private education the year prior… I felt that we were getting nowhere despite the tutors, IEP, designation resources and afterschool programs. He just didn’t seem like he would ever grasp numbers and letters to advance from basic kindergarten teachings. That’s when we packed up our Toronto, Ontario Canada lives where I had a corporate career and 20years of enjoyed living, to move to Niagara Falls, my hometown and where my parents also reside. My mother had always offered to homeschool. She’s not a teacher by technical profession but by her inheritant abilities, she has been the right one for Jaxon. In the last 4 years, Jaxon has progressed academically placing his math foundations at that of a grade 4 and his English at a grade 3. His other subjects while not written but rather recited and absorbed through his way of learning, are at grade level so he KNOWS science, history, geography and physical education. Will he read to me? Absolutely not. For a chatty Cathy talker day to day, Jaxon is quite shy when it comes to his abilities. He acknowledges the differences between himself and kids his age. I encourage him always and pray he can take pride in the things he tries whether he can or cannot fully demonstrate the abilities as much as someone else. Like I tell him, no matter what we do in life…someone can always do it better so we just need to do OUR best. And so he tries consistently. He is an avid rower at the local club and is well appreciated by the young kids there because Jaxon is innocently hilarious. Jax can mimic most character voices he hears and also other sounds. He is really into puns although uses them often when the actual context from which it arises from, is missing. But that’s Jax. He has a way of warming your heart out of his genuine empathy and compassion. He is extremely helpful and will perhaps too quickly, jump to lend a hand. Once he has learned how to do a chore or project through hands on demonstration… It may or may not become his new favourite thing. He loves to cook and is actually very good at following instructions in the kitchen. He can use tools, gardens, swims like a fish, can follow a simple list of 3-5 items in order to grocery shop independently and has started venturing to a local convenient store about a km away by scooter. He has travelled all over with me and is a food conesseur! Our newest thing is back country camping which involves survival skills, strength training, navigation and learning about nature, safety and overall self. I can visibly see his little wheels turning often as he reads the room socially and tries to adept to what others may be saying or doing. I have been broken hearted with the disregard and unwillingness others have had when it comes to getting to know Jaxon as well as warmed from the inside out by those who have adored and appreciated him for all that he is and can be. As we prepare now for his return to school board education with the entering into highschool next Fall… I worry as every parent does about the interactions and influences he may have. I worry about regression academically and get anxious about the pressures he will face that include social interactions too! But I don’t worry about his future. The fact is, it will be whatever he wants to make it. Jaxon can get lazy so will always need my push – and that’s okay! If he’s interested in something or made aware of the outcomes possible then he can do anything. There is a lot to be said for scheduling and routine as with FXers, repetition and mimicking are traits that are highly evolved. The positive influences and those actions exhibited by others are a great attribution to the behaviours mirrored by my son. He has many selves is the best way to put it because he is socially a chameleon. Different environments prevail a different Jaxon. He can conform to the tone, language- both verbal and body, style, mannerisms and even charisma of those he comes in contact with. For many reasons but as it relates to his future responsibilities throughout life at home, personally and within community… I believe many jobs will be possible. He already does side jobs with me and is respectful to residential clients that we do cleaning, yard work and organizing for. Time and money will always pose him problems as everything is 20 dollars or 20 minutes but generally, if he is told what time to be ready or expect something…he is proficient to a tee. He does everything fast but I am so proud of his practicing self control as he gets older. Less impulsive and more thoughtful. He is pro at remembering actors and actresses in movies , as well as regurgitating things he’s heard. The context or time to tell me may be completely off but he recalls the most obscure things whenever that time happens for him. Sometimes I can’t keep up and he will lose me in his train of thoughts, however, I’ve found the connection between his communications to be far more advanced then my head allows me to entertain in the moment. His thought connections and database of information he struggles to express at the right time in the right place IS all there and it breaks my heart to see him struggle to get out the facts I know and he knows he has stored in there. Jaxon is stronger than me in so many ways. He has taught me how to be patient, how to adopt inclusivity and equality into all life settings, how to advocate with purposely and what really matters in life. His positivity is my reason everyday to also be the best version of me that I can. Because he watches. He trusts and admires me. He needs to be lead by example and moreover, he can note how myself and those around us are flawed too! We each have challenges and Fragile X has proven the extraordinary powers that those who are affiliated to it also must have. There is no handbook and while similarities reside for every individual diagnosed , they will all uniquely bless our world with the minds and bodies that God gave them and for the gifts that my son has given me over the years… He could never understand that just his presence alone has allowed my own characteristics and belief system to evolve. Jaxon makes me thankful and our love for one another outshines anything I’ve ever known. He will see the world. He will touch many lives. He will do as we all do, which is to keep learning everyday and as long as my life allows me…I will forever be a teacher, a friend, a supporter, an advocate, a confidante, a listening ear, an advisor, a stepping stone, an assistant, a referral, a liaison and most importantly, a mother who is learning through HIM as she too grows. His light shines my way.

Special Facts

Loves rowing and basketball, loves the colour blue, loves kittens and elephants, loves sushi

How has the NFXF helped you and/or your family?

We have had support from community involvements and by way of connecting to other families. He have ran the 5K and attended annual BBQs. Access to resources, research and medical information has also been a key foundation for guiding the learning I have needed over the years.