This year for Mother’s Day we connected with a few Easter Seals moms to talk about parenting a child with a physical disability and to get their words of advice and greetings for all of the other moms out there.
A Message from Ipek
Our first message is from Ipek, who is the mom of our 2020-21 Provincial Ambassador, Dante.
What is something the world needs to know about being the mom of a child with a physical disability?:
Being a mom of a child with a physical disability is a beautiful experience just like parenting any other child, except you have to do it blindfolded, through an obstacle course, while hopping on one foot, and balancing very large stacks of paperwork on your head, while people bump into you, and tell you what they can’t do to support your child. Oh, and you have to attend a lot of meetings, most of which are redundant and provide no useful outcome.
Parenting also eventually becomes synonymous with advocacy, and you realize that parenting a child with a disability is not difficult at all, it’s society and the attitudes of others that create the difficulties.
What has been your proudest moment as Dante’s mom?:
Being Dante’s mom has been abundant with proud moments, however, I’d have to say my proudest two moments were when he gave a speech at a press conference at Queen’s Park to advocate for access to health care services for all children living with disabilities in the province, and when he gave a speech as the 2020 ESO Ambassador at the Conn Smythe dinner.
Do you have a message for other Easter Seals moms?:
Enjoy your unique child just as they are. And be sure to always make your self-care a priority, because your well-being is paramount in you being the great loving support and advocate your child will need, and you can’t serve from an empty cup!
Happy Mother’s Day, you are deeply appreciated, valued and loved.
A Message from Linda
Linda is our Community Engagement Officer in Kingston. She is also the proud Easter Seals mom of Grayson.
What does the world need to know about being the mom of a child with a physical disability?:
As it is one of the most challenging things in life, it is also the most amazing and rewarding gift as well.
What has been your proudest moment as Grayson’s mom?:
There are so many! But I would have to say at the time of Grayson’s diagnosis, we were told there were so many things he would not be able to do. Grayson has surpassed so many of those things. They said he would not walk, he takes a good 15-20 steps independently! His strength and determination inspire me daily.
Do you have a message for other Easter Seals moms?:
Even though you may feel alone, and very scared about your child’s future. There are so many other families out here to support you, you are not alone. Find yourself a support system that understands (local children’s hospitals can help make connections). Don’t be hard on yourself, take it one day at a time. God chose you to be this special child’s parent
To all the amazing moms out there, be gentle and kind with yourself, and take time for your mental health, you will need to be in your best health to provide your best.
A Message from Crystal
Crystal is the mom of our current Provincial Ambassador, Sebastien.
What has been your proudest moment as Sebastien’s mom?
I can’t find just one moment that has stuck out the most because I am proud of Sebastien every day. I have watched him work so hard since the day he was born to overcome all obstacles that have been thrown his way. He continues to show me what strength is, what courage is and he does so with the most positive attitude. He has taught me to slow down and celebrate not only the big successes but the small ones too, because the small ones usually mean the most.
Sebastien is not scared to try new things, he puts himself out there for the world to see and most importantly he accepts himself for who he is. He does not let his physical limitation slow him down and if he can’t do something then we work together to come up with a solution for how he can. He always says to me “mom, we got this.”
He is an amazing advocate for other children with physical disabilities and he wants the world to know that they are just like everyone else and that they deserve to be treated with kindness and respect.
Sebastien’s dreams and goals in life are inspiring and I am so grateful that I get to be a part of his journey with him.
Do you have any words of advice for other Easter Seals moms?:
To the mothers who are just starting their journey I would like to say “Breath mama, you got this.”The beginning is the hardest because there is still so much unknown about your child’s disability. You will find your inner strength and you will be the rock that your child needs you to be.
Always remember that you know your child better than anyone else. Don’t let anyone tell you that your child will not be able to do something when in your gut you know they can, therapist are not always right. Trust your gut and get creative to make it possible!
It’s ok and normal to have bad days, it’s ok to cry for both you and your child. Take today and let it out, tomorrow will be better. I promise that you will learn when to push and when to say “forget your exercises today, let’s go play”(you’re allowed!).
Teach your child to believe in themselves and their abilities. Make sure to celebrate every accomplishment no matter how small they may seem and most important teach your child to love who they are with walkers, canes, wheelchairs and all.
Don’t forget to take time for yourself, you deserve it and need it. Try and do it without guilt and let yourself recharge!
I know it’s overwhelming now but trust me when I say it does get better. It’s not an easy journey but that is what makes it the most rewarding journey you will ever walk.
To all the Easter Seals mothers out there I would like to wish you an amazing Mother’s Day. Always remember that you are appreciated, not just today, but every day and loved by your child more than you will ever know!
HAPPY MOTHER’S DAY
A Message from Carol
Our next message is from Easter Seals mom Carol. She is the proud mom of Chloe, who is not only a Regional Ambassador but the face of the national Easter Seals Centennial campaign!
What does the world need to know about being the mom of a child with a physical disability?:
I think that the world needs to know that parents/moms of kids with special needs need your support and patience. We don’t need to hear “it will be ok” because we know that. There is no manual for this journey but we are just like every other mom out there who wants to see their kids thrive and be happy. We want to know that our communities will continue to remove barriers for those with disabilities and build a future that accommodates everyone.
Do you have a message for other Easter Seals moms?:
My message to moms with a young child, just starting their journey, is that creating time for self-care is equally important as caring for your child. The saying that you can’t fill from an empty cup is 100% accurate. Partner with another mom who has been on the special needs journey or is on it as well, and find time to connect as often as you can. Knowing you are not alone and talking to someone who can relate is better than any therapy out there.
What has been your proudest moment as Chloe’s mom?
Recently Chloe was interviewed at Dancing with Easter Seals Stars and afterwards, she was so happy and excited to have done it she wanted to know when the next event was! That is definitely one of my proudest moments as Chloe’s mom, a small step in realizing her own potential. The stars are the limit for her! Also seeing her compete at a National Level for cheerleading was absolutely remarkable and thrilling!
A Message from Rahaf
Rahaf is the mom of our current Provincial Ambassador, Hoor Ulain.
What does the world need to know about being the mom of a child with a physical disability?:
My message to the world is: “Empathy not Sympathy.” Children with physical disabilities and their mothers need the right feelings. The right feelings of empathy, understanding, compassion, and cooperation all together contribute to create chances that make children with physical disabilities and their caregivers feel/ live better.
What has been your proudest moment as Hoor Ulain’s mom?
Small progresses and even tiny developments are enough for a mother of a child with physical disability be proud and happy, especially mothers of young children with physical disabilities.
Throughout the years, I have always been proud of Hoor Ulain. It might be strange for someone to know that some of my happy moments were when Hoor Ulain was able to “use a straw” and later “hold a pencil.” It was great when she was able to be “on a ride in a theme park” and “participate in a (modified) sport activity in physical education at school.” I remember also the first time she went on the stage and sang in a school choir.
Her best accomplishments were when she received the “Spirit of Learning Award” in Grade Eight Graduation, and her first public appearance as 2022 Easter Seals Provincial Ambassador in Conn Smythe Celebrities Dinner in April. Watching her give a motivating speech confidently was a dream come true.
Do you have a message for other Easter Seals moms?:
I want to tell other Easter Seals moms, and in particular moms with young kids at the beginning of their journeys: “Please stay strong, positive, and powerful.” The secret behind the success of our children is our optimism, the belief in our children, and our dedication to support them and bring up the best in them.
Happy Mother’s Day to all the mothers, especially the mothers of special and unique children like ours, and to every caregiver of a special and unique child. I wish them all a year full of happiness and joy.
A Message from Jeannie
This message is from Easter Seals mom Jeannie. She is the mom of Kyle, who you might recognize from our provincial Easter Seals Centennial campaign!
What does the world need to know about being the mom of a child with a physical disability?:
Being a mom to a child with a physical disability can be very challenging but at the same time it can also be rewarding. It can be challenging in the sense that it is a lot of work for you as a mother as they have extra needs that needs to be filled day by day by simple daily tasks as in getting dressed going to the bathroom and even with bathing.
It also is challenging in the fact that if you are going places depending on where you are going you may have to call ahead to make sure that it is wheelchair accessible. I didn’t realize how many places that’s not wheelchair accessible until Kyle was in one. More importantly it is such an amazing feeling watching Kyle learn to be independent and try to take on tasks that he couldn’t do before. It is just an overwhelming feeling of joy and pride when your child reaches an accomplishment that they have been working towards no matter how big or small the accomplishment is you still get the same feeling.
What has been your proudest moment as Kyle’s mom?:
Wow that is a very hard question to answer as there have been so many moments where I have been proud of him. I am overly happy and proud that Kyle was chosen by Easter Seals to be involved with the Easter Seals Centennial anniversary and has his picture on the main page for their Centennial Anniversary website. As well as being featured in the February newsletter. I am especially proud of all of hard work that he does in his physical therapy as well his speech therapy. Kyle is very interested in numbers as well as weather and is asked by his teachers every morning what the weather is going to be for the day and if there are any weather warnings. Kyle has also self-taught himself how to do multiplication, some division, addition and subtractions. When Kyle was in grade one, we were told that his knowledge of math was the equivalent to a grade 5 level. It makes me so proud of the person that Kyle has become he’s a very friendly, caring and happy young man who is ready to face any challenge that is ahead of him. Kyle is the kind of person who would look at someone if they are crying or upset and will offer them a hug to try to make the person feel better. Kyle doesn’t see himself as a child with a disability, he thinks that he is just like other children in his age group.
Do you have a message for other Easter Seals moms?:
I would tell them that one of the most important things is to NEVER EVER GIVE UP on situations or goals. Don’t let other people bring you down when you share something that your child did successfully even if it is only a small accomplishment. When you share a success story the person my say or think something negative or just blow it off as nothing. When a child with physical disabilities accomplishes or even improves on a goal, they are working on or even something that wasn’t a goal it is a HUGE DEAL and should be praised and encourage them to keep up the good work. Some people who don’t have a child with a physical disability can be thinking oh that’s not a big deal and not see the reason why you are so happy and proud of your child for their success and accomplishment.
You should also have a support network or person who you can talk to or vent to whenever you are stressed out or you want to give up. Remember that your child is working a million times harder to do or accomplish everyday tasks. I have had those kinds of days and when I do I reach out for support and talk it out so that you can feel better. It’s also very important to PLEASE NOT treat your child like they are in a bubble or a fine piece of China. Let them try to do stuff if they want to try, let them see how far they can go. I’m sure that it goes without saying as long as they are going to get hurt or it’s something dangerous then of course don’t let them do it. We have always let Kyle try things on his own and never held him back. It gives them a great sense of freedom, happiness and the feeling of inclusion with his peers.
Lastly don’t hesitate to reach out to foundations such as Easter Seals or any other foundation that offers help and support with several supports well as financial help. Especially since the equipment that some children require on a day-to-day basis can be EXTREMELY expensive. If it wasn’t for Easter Seals and their ABSLOUTLY AMAZING foundation I’m not sure if I would have been able to get Kyle the equipment that Kyle needs on his day-to-day routine. I know that it is very hard to take care of a child with a physical disability but eventually it becomes a part of your daily routine and you don’t see your child as a child with a physical disability you look at them and all you see is your son and I am so proud of him and think I couldn’t love any more than I already do.
A Message from Brenda
Our final message is from Brenda, mom of Maclain. Brenda is a passionate advocate and has worked with Easter Seals for many years to bring change to our education system for special needs students. We are now fortunate to have Brenda as a member of our Board of Directors.
What does the world need to know about being the mom of a child with a physical disability?:
Being a mom is the most amazing experience and it takes you on a thrill ride that you can never be prepared for. One that allows you to experience all the emotions all the time whether you like it or not. Being a mom of a child with a physical disability takes you on that same ride but at a breakneck pace with a whole lot more twists and turns and you are often hanging on so tight to keep from falling off!
What has been your proudest moment as Maclain’s mom?:
It sounds cliché, but I have moments daily. We were told about all the things that he would never do, and it would be so easy to focus on those. But he has accomplished so much and continues to surprise people daily. I am so proud of him, and I literally tell him constantly how proud I am of him because I am!
Do you have a message for other Easter Seals moms?:
This is a tough one, there is so much to say. And it all sounds so much easier said than done. But I would say just love them hard, try to focus on today, celebrate every day in some small way. You have been through so much and will continue to deal with momentous challenges that might seem so overwhelming, but you will be ok, better than ok, and you are an amazing mom!
You got this!
You can give a gift to all Easter Seals moms by making a donation today.