Angus refuses to let his condition define him and he faces life with a smile, determined to surprise, shock, and teach people what ability looks like.

Back in 2010, I was 20 weeks pregnant with our third child. I'm ashamed to say I was complacent when we went into the scan room - just excited to find out the sex of our baby and not at all thinking about the possibility of anything being wrong. After a massively long time the sonographer turned off the machine and looked at us; she told us that she had seen a 'lemon' shape and a 'banana' shape which made it likely our child had spina bifida. And there it was. We knew nothing about it and to be honest the rest of the pregnancy was a whirlwind.

Angus was born, gorgeous and calm, on the 4th of October, 2010. He was whisked off to the special care unit and had his back closure surgery on day 2 of his life. We felt like the luckiest parents alive that first day after his surgery - he was truly the most gorgeous looking baby and all the nurses would fight over him in the ward. No part of us as parents ever didn't feel immense pride in him - he was just perfect to us.

Fast forward 8 years. 8 years of determination and proving everyone wrong. 8 years of fun, laughter and love. Angus has the most wicked sense of humor; he is open and loving. He has never once complained about any of his difficulties despite them being numerous. He falls over ten times a day and we often joke that if Angus cries its time to call an ambulance. Let me put all this into perspective: Spina Bifida is a condition that affects almost every part of your body and this varies widely from person to person. For Angus this means his legs are weak and his feet have a progressive deformity - he wears solid splints to compensate for this but cannot walk far or fast, so he uses a wheelchair for getting around and sports. He is visually impaired, has hydrocephalus, is doubly incontinent, and has poor fine motor skills. He cannot learn new skills easily so school can be difficult for him. He has had to endure lots of medication, treatments, appointments and surgeries.

This all sounds rather bleak, but the reality of Angus is nothing like what he looks like on paper! He is the child I wish I could have seen as a parent expecting a child with Spina Bifida and not knowing what to expect. He refuses to let his condition define him and he faces life with a smile, determined to surprise, shock, and teach people what ability looks like.

He is the child I wish I could have seen as a parent expecting a child with Spina Bifida and not knowing what to expect.

There was a time last year when we saw his confidence drop. He started to be more shy, more aware of his differences, and less able to talk about them. Angus finds it hard because he can walk, but not sufficiently to compete or keep up with his peers, and yet he is not completely paraplegic so he doesn't feel like he fits into that group either. Thankfully, he saw a video online of someone called Aaron Fotheringham who started as a child riding his wheelchair on the skatepark and a girl called Lily Rice who achieved a wheelchair back flip at 13. This inspired him to get involved in the sport WCMX (wheelchair motocross). His amazing resolve set in and he told us he had decided to raise money for a lightweight wheelchair to keep up with his friends. He planned an '8 mile roll' down the river Thames to show how difficult it is to be independent as a wheelchair user. With the help of his incredible school  and our wonderful community he raised the money in less than a week. He was in several local newspapers and amazed us with his resolve and determination - wheeling over three miles himself during his challenge.

Once he received his new lightweight wheelchair, he started alongside his skateboarding brothers to test out what he could achieve at the skateparks - posting a video of him starting out online. Lily (Silver Medalist in WCMX) and her dad Mark came to visit Angus at a local skatepark and shared his video with key people, which ultimately lead to Angus being funded for a bespoke Roma WCMX chair by Princes Gate Trust. This was a life changing moment for Angus.

The area Angus was seriously behind in before starting to train for WCMX was independence. Getting a WCMX chair made specifically for him has changed the way he sees himself - he rides it with pride. He is a child who has gone from having no wheelchair independence to a child popping wheelies, hopping down curbs, and even dropping in on 5 ft half pipes. He has a fearless streak and loves to amaze and surprise people. He talks about his WCMX with a pride we have never seen and honestly we love others seeing how capable and determined he is. He falls and he gets back up, but importantly it teaches everyone that he is just a kid - not a disabled kid, but just a kid. There are no limits on Angus's future - I honestly can see that he will achieve what ever he wants. I hope that other parents can see what is possible and feel hope for their children when they look at Angus. Having challenges in your daily life builds an authentic resilience that I am just in awe of.

More than a sport, WCMX brings a community, the chance to compete, time skating with his brothers, and a sense of pride. At a recent event we watched him wheel around, confident to chat to his friends and even his heroes without help. When we look a back over the last year we can't believe all the Angus has achieved and we know his journey has only just begun.

You can follow Angus's adventures on instagram at @anguswcmx.

Editor's Note: To learn more about Doreen and Eli's story and to find more resources for stutterers, check out their website.  You can join the Voices Unearthed facebook group here.

Our son Eli, now 21, stutters. He began stuttering (actually, blocking) when he was 2 ½.

My experience raising a child who stutters inspired me to write Voice Unearthed: Hope, Help, and a Wake-Up Call for the Parents of Children Who Stutter. The long version of what I’ll say here can be found in my book, but here's the short version: Eli's struggle to speak began around the time he was three. Despite starting therapy, his stutter worsened and between the ages of three and nine, he became increasingly silent and disengaged in the world around him.  

Initially, Eli attended speech therapy that focused on fluency shaping and stuttering modification. This therapy was intended to “fix” him, or at least help him to stutter less. His therapists offered him all the tricks of the trade: they taught him how to stretch out sounds, take deep breaths while speaking, distract himself by tapping on his leg, and make good eye contract with those with whom he was speaking. They also taught him more complex strategies, like how to practice easy linguistic bounces and onsets (using repetition to practice saying a word in an easy way).These strategies only succeeded in so far as they taught Eli that the less he talked, the less he stuttered.

By the age of ten, frustrated with his previous treatment, we finally found a therapist who focused only on getting Eli to talk. As this therapist put it, “his previous therapy sucked all the fun right out of talking.” Over the next few years, we got our son back.

Through it all, we tried a variety of treatments to work on Eli’s stuttering. We tried yoga and meditation, but he didn’t follow through too much (nor did I!). Our main goal was always to support Eli as he explored his interests and passions and to surround him as much as possible with loving and supportive friends (both kids and adults) who knew how to interact in a way that didn't impede his communication.  Now that doesn’t mean that his buddies, brothers, and parents didn’t ever talk over him or interrupt him – we all do that to each other all the time, but we tried our best to keep all of that at a minimum – not just for him, but for each other too. We all became much better listeners in the process of helping Eli overcome his stutter.

We all became much better listeners in the process of helping Eli overcome his stutter.

Today, Eli dreams of becoming an astronaut or at least being involved in the space industry. He is a senior in college, always on the dean’s list, and is currently working as an intern at NASA in their prestigious intern research program. (They’ve already invited him back for next summer!) Once Eli knew what he wanted to do, there was no holding him back. Last summer, during his NASA internship, he called every week with stories of people to whom he had introduced himself, and the many interesting discussions they had about shared interests, research, and upcoming opportunities.  And yes, he still stutters with severe blocking at times! He also has tons of friends and has had several girlfriends.

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My best advice for the parents of children with “differences” is to make room in your child’s life for lots of exploration, experimentation and failure. Help them build their confidence, self-esteem, and a strong sense of self.  Be crazy, goofy, joyful, and silly with them and with yourself. Show your vulnerabilities and acknowledge your failures so your child can see you get through them. That's how they'll learn to do the same.  

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How important is it for children to see representations of themselves on television? Numerous studies have shown that children benefit from encountering media in which they can see people who look and sound like they do, though much of the research on this topic is regarding representations of race and gender difference. More and more, however, there is recognition that children with disabilities and other forms of difference need representation too. Sesame Street has historically done a wonderful job of representing all kinds of children and families on their show. In 2017, the program made new strides in this direction, debuting Julia, a character on the autism spectrum. In the last year, the show has introduced Julia's family (and her dog!). Julia is part of Sesame Workshop's initiative to See Amazing in All Children. The program offers resources and information for families who are affected by autism. Educational psychologist Dr. Jeannette Betancourt, who leads the Sesame Workshop's social impact initiative, said that Julia is intended to help viewers see the similarities between all families, no matter their situation, as well as learn about the autism spectrum.

Now, Sesame Workshop has introduced Karli, a new character whose parents are recovering from addiction. Recognizing that more and more of our nation's children are affected by the addictions of their caretakers and families, Sesame Workshop has decided to show its viewers the challenges and successes experienced by Karli and her family. One of the best part of the above segment, which introduced Karli, is that it affirms the idea that addiction is a sickness which requires treatment. This will help children understand that their parents have not abandoned them by seeking help, but are in fact getting help in order to be better parents. The segment also emphasizes the fact that parents who need to leave their children for addiction treatment are faced with a terribly painful decision. As Salia says in the segment above, though her parents were only away from her in treatment for sixty days, to her that time felt like sixty years. As Salia's dad reminds her, it felt terribly long when he was away from her too. He cried because he didn't want to leave her, but he went to rehab because he wanted to be a better parent.

Karli's introduction to Sesame Street represents an important step for representation of children who are affected by addiction and other mental health conditions. We believe that this character will not only help children affected by addiction realize that they are not alone, but help children and their parents have important conversations about respecting difference and finding the common ground that we all share.

For more information about how representation affects children, check out the Tuft's University Children's Television Project.

Art is a way to express feelings. While drawing I am happy, often angry, sometimes endlessly sad or even destroyed. Sometimes I feel all of these emotions all at the same time.

My paintings are an entrance. I want the viewer to become a part of the world of a person whose life is influenced by autism.

That brings me straight to a word "autism." If you look at my pictures, then you may make assumption that I am autistic myself. In fact, it is my son who has this particularity. When he was only a few months old, I realized from his rhythmic movements and twitching that something was different about him. I told my husband about it and we watched him for a while. The symptoms were worse on some days and better on others. Over time, however, unbridled tantrums, screaming attacks, and self-injuring behaviors overwhelmed us. Sometimes our son hit his head so hard against the floors and walls that he was green and blue. At night he had screaming attacks and roared so loudly that our neighbors complained to us and knocked against the walls.

At first I was angry and sad, because I knew there was no cure.  I was desperate and completely at the end of my rope. Then I took notes and began to paint and sculpt together with my son. We changed our life in small steps and art as well as reading became an important part of this change. My husband and I practiced accepting him as he is, with all his edges.  Our painting together spurred me to cope with all my emotions. My son can not bear it when I cry, scream or laugh loudly. So art is the best way to explore all the feelings I have.

My husband and I practiced accepting our son as he is, with all his edges.

An "autist" does not differ externally from a "normal" person. He stands out only because of his behavior. In the past, I was easily annoyed by the looks of other parents, when they observed my son's symptomatic behavior. Today I am more relaxed. This is exactly what I try to show in my pictures. I don't shy away from showing the pain and the anger that I sometimes feel when my child is violently spinning and can not be calmed down. I practice with him every day and we do rituals that give him security. Sometimes I struggle to cope with this pressure. My paintings help me. I publish my works on the internet to reach people all over the world who may be affected by similar issues or in a similar situation. My paintings are also for those who have never before had experience with an autistic person. I'm convinced that you will find yourself in my art.

Medical research learns more about autism every day. Therapies are an important step, but above all I've found that the cohesion of the family is what helps the most. Without my husband, I might have failed in the experience of raising a child with autism. Without my painting, I would have died emotionally.

I think it's important to find a balance. Many parents of autistic children forget about themselves and spend all their time worrying about their children. For them I hope that, despite all the challenges, they can remember to take care of themselves too. Most of all, I hope that others remember that they are not alone.

You can contact or follow Desi's work at @eerised_art.