Each Monday join us to celebrate #MilestoneMondays
We will highlight an individual living with OCNDS and celebrate a milestone that they have achieved. Those living with OCNDS have many daily challenges. Some challenges are as basic as swallowing, toileting, dressing themselves, putting on a seatbelt, and making friends. Individuals with OCNDS have to work harder than the average person to reach the smallest of milestones.
If you would like to share your child’s #milestonemonday, please use this form.
Today we cheer for Brielle! Her mom recently shared: "Brielle is 17 and has a beautifully bubbly personality and great sense of humor. She has learned to adapt to many OCNDS challenges, especially in the kitchen because her tremors make it hard for her to cut, pour and estimate. She is a superstar as she always wants to give things a go. Here she made some Rocky Road." Way to go, Brielle!
Today we celebrate Kirsty! Her parents shared: "Kirsty is terrified of animals. She has a phobia of dogs and will panic at the park if she sees one nearby and doesn’t like to walk past them in the street. So when she was invited to her friend’s Pony Party we didn’t expect her to join in or go anywhere near the animals. It was a struggle to get her to engage with the pony but with the support of her friends she gradually approached one and eventually agreed to brush the mane and then even stroke it. It was a massive achievement for Kirsty to agree to sit on the pony, which she did at the end of the party with dad holding her hand. She was afraid but managed to overcome her fear to enable her to join in with the other kids and do the same things as everyone else. We are very proud of her." Way to go, Kirsty!
Today we cheer for Matilda! Matilda is a sweet, social girl who loves dressing up in fancy clothes and high-heeled shoes. She loves fashion, dolls, and animals. She loves keeping up with all the news in her family and making sure everyone is doing ok. She loves going to school and helping her teachers. Matilda was diagnosed with OCNDS at the age of 13 after years of us searching for answers to what was causing her developmental delays and accompanying anxiety. She has a lot of anxiety over performing self-care tasks independently and tends to use them as an opportunity to demand parental attention and involvement in a very busy house. We have been working hard to create connection time, separate from self-care, as well as strategies for her to perform tasks such as breaking things down and practicing getting wet to alleviate her tactile defensiveness. With a final push, a giant meltdown, and a firm limit, she was able to wash her hair by herself with only verbal support from mom. She was so proud of herself and can now shower completely independently. Way to go, Matilda!
Today we celebrate Jules! Jules is 12-years-old and a budding chef. Her parents describe her as spicy, clever, naughty, determined, and full of life. She has OCNDS and is nonverbal. Jules loves to cook and her school program embeds all facets of cooking into her curriculum to foster independence. On Mondays, she goes grocery shopping for her ingredients. Jules parents' shared: "She amazes us every day! Her 2 favorite dishes to prepare from scratch on her own are ceviche and jambalaya. They are beyond delicious. We don't prepare meals for her anymore because she makes and cooks everything she wants. It is incredible considering how hard so many other things are for her." Way to go, Jules!
Today we celebrate Elyis! Elyis is a very happy 17-month-old! His mom shared: "He spends his days trying to keep up with his two older brothers! At 6-months-old he started weekly PT because he couldn't even hold his head up yet. Now he is trying to free stand!" Way to go, Elyis!
Today we celebrate Carson. He is 7 years old with a heart of gold. His mom shared: "He is very active and loves to be outside! He also loves to help do just about anything! Carson used to have multiple seizures a day, and he has been seizure-free for 11 months now!" Way to go, Carson! This is incredible news!!!
Today we celebrate Pedro! Pedro is a very active, happy, and loving boy. He loves going for a drive and going to therapy. His challenges are cognitive delay, speech delay, and hypotonia. Due to OCNDS, therapies fill his days including speech therapy, motor therapy, hippotherapy, and sensory integration. All of which have helped him understand how his body works and face daily challenges. His mom shared that, "Pedro is making progress with the PediaSuit Intensive Protocol, a type of muscle and occupational therapy. With this protocol, he has been making gains in walking, sitting, moving, in addition to working all the sensory and cognitive aspects." Way to go, Pedro!
Today we celebrate Eden! He is 5 years old. His parents describe him as "a happy boy and stuntman who makes us proud and brings us his zest for life every day." Eden has OCNDS. It impacts his daily life as he has epilepsy and developmental delay. This summer, Eden learned to ride a bike. His parents shared, "He worked to do it. His determination and attitude to never give up gives us hope for the future." Way to go, Eden!
Today, we celebrate Kirsty! She is a loving and sweet 9 year old girl who is eager to please. Her parents recently shared a milestone: "Kirsty has always struggled with toileting issues. She suffers with constipation which seems to be a common problem for children with OCNDS, possibly due to a combination of low muscle tone, sensory processing disorder and behavioural issues. During the time spent at home during Lockdown Kirsty has finally managed to use the toilet for number twos. She has always preferred to use a pull up and still needs to be encouraged to sit on the toilet instead, but we seem to have turned a corner with the problem this year, with the help of a reward chart." Way to go, Kirsty!
Today, we celebrate Brady! Brady's mom recently shared us: "Brady has had many challenges throughout the years, but he has not let them stop him from doing what he loves and wants. Brady is a typical boy and loves anything sports related. He is a diehard hockey, football and NASCAR fan, and attends all home games of our local hockey team.
Not only a sports fan, Brady is also an athlete with his school district’s Unified Basketball and Bowling teams, as well as a participant with NY State Special Olympics and our local Challenger Baseball League. He has been able to forge many lasting friendships through playing on these teams and has learned what being part of a team is all about.
Brady attends a Life Skills educational program at our local BOCES and is doing very well. He goes out to real work settings to gain the skills he will need upon graduation. He will remain in school until he reaches the age of 21.
This young man is full of life and doesn’t let anything stop him. I’ve never looked at him as being a disabled child, but rather a differently abled one. He has shown me what a true fighter is, as well as giving unconditional love. I have learned much more than what I have given from this blessed young man. He truly has the heart of an angel and is my inspiration. " Way to go, Brady!
Today, we cheer for Claire! Claire is sweet, happy, fun-loving, clever, and imaginative. Claire was diagnosed with OCNDS at 10 years old. Claire's mom recently shared: Math used to be her most challenging subject, but now it is her best! Claire's math skills took a big leap this (2020-21) school year. During the April parent-teacher meeting, Claire was described as having a "math brain." Once a major challenge, Claire is now able to add and subtract double-digits. She's learning multiplication by grouping and rhyming off times tables. She knows the value of the different bills and coins and is able to make change. At school, Claire "gets down to business" and works hard - and it shows! We are so proud of her! Her achievements this year demonstrate what can be accomplishment with the help of supportive educators, encouragement, patience, and hard work." Way to go, Claire!
Today, we cheer for Adriel! Adriel is an adorable, loving, observant boy. He loves to dance, watch soccer, and spend time with his siblings. He is 10 years old, however, he is the size of a 5 year old and requires a G-tube* for food. Adriel has OCNDS. His mother sent us an exciting update - Adriel is trying to take food by mouth such as bean broth. She says "it is extremely difficult for him but he is trying very hard." If he can continue to take food by mouth successfully, he will be able to have his G-tube removed. Way to go, Adriel!
*For those unfamiliar with a G-tube: a G-tube, is a surgically placed device used to give direct access to your child's stomach for supplemental feeding, hydration or medication.
Today, we cheer for CODY! A few days ago was Cody's graduation ceremony. His mom shared: "He has done 1000+ hours of speech therapy, physical therapy, music therapy, occupational therapy, horse therapy, and developmental therapy to get to this day. Drs said he would not walk- started walking after age three. Dr said he would not talk - started speaking at age 9. He rides his adult trike and last year and this year will be working at the grocery store bagging groceries for his summer job. I’m so proud of his determination and positive attitude (everyday he says he is awesome). He starts the next chapter of work skills this fall and I will update you then. As Dr Seuss says, "Don’t cry because it is over, smile because it happened." Way to go, Cody.
Today, we cheer for Abigaile! Abigaile is a very loving, caring person who loves to play with children and her cat, and she has OCNDS. Her mom recently shared: "Abigaile is a strong girl who has come so far. She struggled with her math until she join Darts Ontario; she has placed 3rd for all of Canada. Her family couldn't be more proud of her and can't wait to see what the future holds." Way go to, Abigaile!
Today, we cheer for Morgan! Morgan is getting ready to graduate from high school with a diploma!! Morgan's family shared: "After spending his whole school career struggling with academics, he fought hard, and has earned on his own, the diploma, as we were originally told he could only receive a certificate of completion. Morgan was only diagnosed with OCNDS last summer at the age of 17. We have been searching for answers since we first noticed delays in walking around a year old. As a twin, we were able to notice the differences early in life. Initially diagnosed with ADD and eventually a form of epilepsy, Morgan has diligently taken his seizure meds and has been seizure free since 14 years old. Morgan is a shy, loving person who is very active with soccer and his animals!" Way to go, Morgan!
Today, we cheer for Elle! Elle is a sweet and energetic little girl who loves being a big sister and going on adventures with her family. Elle has OCNDS and her parents were worried about her transition to remote-learning: "Transitions are difficult for our Elle. Elle’s start to kindergarten may have started on a less traditional route but she is making the most of remote-learning! We are so impressed with her ability to adapt to remote-learning and make the best of a tough situation." Way to go, Elle.
Today, we cheer for Mia! Mia is 23 years old and is happy, sociable and friendly. "She loves to organize social outings with her friends to go shopping, to the movies or to concerts. She has OCNDS but she is incredibly tenacious and persistent and she does not place limitations on herself. She competed in 7 swimming races for the recent competition and surprised herself with her backstroke. She had not realized she could swim backstroke so well!" Way to go, Mia!
Today, we cheer for Matilda! Matilda is caring, helpful, intuitive and full of ideas. She is 14 and loves connecting with others and chatting. She loves singing and dancing. Her mom recently shared a victory in the kitchen! "Matilda has always had trouble with hand dexterity and fine motor control due to OCNDS. I'm always excited when she wants to help in the kitchen, even though it often ends in tears and frustration. This time she was able to stick with it, asked for help, listen to my directions and corrections when I showed her how to peel longer ribbons, and worked really hard over 2 days to accomplish peeling one apple in one long ribbon. There were many apples with very short pieces, and it was exciting to see the joy in her when she would manage to peel a longer piece, and she kept at it until she was able to do the whole apple!" Way to go, Matilda!
Today, we cheer for Kirsty! Kirsty is a determined, strong-willed girl who wants to do the same things as everyone else. She is 9 and has OCNDS. Her parents recently shared: "Kirsty passed her kickboxing grading, going from a white belt to a red belt. Given her difficulties with short stature, low muscle tone and learning difficulties, it is a major achievement that she managed to learn the syllabus including locks, holds and throws. Kirsty always watched her siblings doing kickboxing from the sidelines and as soon as she was big enough for the uniform, she joined the class where she has worked very hard to learn the red belt syllabus and pass the grading." Way to go, Kirsty!
Today, we cheer for Robin! Robin is a joyful, playful, cheeky and adorable little boy who brings joy into everyone’s life! He’s passionate about all things with wheels, playing games and being around people. Robin's parents shared with us: "When Robin was diagnosed with OCNDS, we were told that he may not be able to acquire basic skills or learn concepts such as sorting colors or shapes. During COVID lockdown in Austria, Robin learned to separate his colors!!! To introduce the concept of colors to him, we bought a color matching/sorting game. He picked up on it so quickly and plays this game every single day! Robin surprises us nearly every day with his abilities! Perhaps it’s less than what many two-year-olds can do, but whatever he does, he does extremely well. We couldn’t be prouder." Way to go, Robin!
Today, we celebrate Cody! Low muscle tone is one of the symptoms of OCNDS. This is Cody when he was 2. His parents explained, "Cody had such low muscle tone that when sitting on a horse he had to be supported. Here, he is able to sit on his own. Cody was diagnosed at age 16 with OCNDS. Several 100's of hours of physical therapy went into being able to sit by himself on the horse. Cody is quick to smile and he thanks people for helping him. He can brighten your day."
Cody always brightens our day! Cody is now 19. He still loves to horseback ride! It is an activity he looks forward to every week! Way to go, Cody!
Today we celebrate Jules! Jules is 12 years old. Her parents describe her as a budding chef, spicy, clever, determined, and full of life. She has OCNDS and is non verbal. This past year, she started calling her dad, "dada." Most children reach this milestone in their first year. Jules' dad shared with us: "As the years passed, I thought Jules would never call me, dada. I've had many dreams where I hear her voice and she speaks. When Jules said dad for the first time, I thought I was dreaming. I love her voice. Every time she says dada I am reminded to never give up and never underestimate the amazing things she is capable of. Her body is failing her due to OCNDS, however she fights like crazy every day to reveal all the words and thoughts swirling in her clever brain. Dada loves you, Jules." Today, we cheer for Jules! Way to go, Jules!
Today, we cheer for Harper! Her family recently shared with us:
"Harper was diagnosed with OCNDS at 5 years old. She didn’t crawl until 14 months. She has always been delayed in every milestone. She works so hard to do simple tasks her peers can easily do without thinking about it. She reminds us to never give up! We celebrate every milestone because it is a reminder of how hard she has worked to get here. COVID-19 restrictions have given us more time to work on skills. And for the first time ever, Harper learned to ride a bike without training wheels at 8 years old. She loves riding her bike, and now does tricks, riding with one hand going up and down ramps and over curbs." Today, we celebrate Harper! Way to go, Harper!
Today we celebrate Adelynn! Adelynn is almost 3 & has OCNDS. Her mom recently shared: "During quarantine, Adelynn learned how to crawl after working so hard in therapy. She is the sweetest toddler and a social butterfly. Her therapists all say she is a motivated toddler who never gives up!" Today, we celebrate Adelynn! Way to go, Adelynn!
This is Jordan. He is 7 and has OCNDS. His mom wrote with joy: “Today is the day. Jordan finally was able to hold the spoon on his own and eat by himself!!! I'm so..PROUD!! After so many struggles he finally DID IT!!! GO JORDAN!!”
Each Monday join us to celebrate #MilestoneMondays. We will highlight an individual living with OCNDS and celebrate a milestone that they have achieved. Those living with OCNDS have many daily challenges. Some challenges are as basic as swallowing, toileting, dressing themselves, putting on a seatbelt, and making friends. Individuals with OCNDS have to work harder than the average person to reach the smallest of milestones. Today, we celebrate Jordan's #milestonemondays. GO JORDAN!