Finding out that your son or daughter has a disability is one of the most harrowing experiences parents can go through. Oftentimes the doctor giving the diagnosis will list off all the things your child will never do – and your world comes crashing down around you.
Faced with a new reality, grieving for the child you thought you had and coming to terms with the child before you, many parents naturally turn to the internet – only to be confronted with pages of articles on the difficulties of raising a child with special needs.
But rarely do the parents of newly diagnosed children get to hear of the unique joys that come with raising a child who is not quite like their peers.
Livia asked the families of children with Angelman Syndrome (AS), a neurogenetic condition characterised by delayed development, lack of speech and ataxia (movement and balance difficulties) about the unexpected benefits of having a child with the condition. These are their words:
Nicola: “We had a negative picture painted when Anaiyah (8) had her diagnosis. I felt deflated and grieved a long time for the child I thought I should have had. However my life has been changed and enriched so much by having her in my life. The good outweighs the bad for me.
“I love my daughter with every pore of my body, she’s amazing, she’s intelligent, she’s beautiful inside and out, she has the most infectious smile and laugh.
“She’s infuriating sometimes, when she doesn’t listen or do things I ask her to do, but it’s amazing the number of people that I have met through just her smile. People stop me and comment on her smile – I find it incredible that a child who doesn’t speak can have that effect on people.
“She’s truly an inspiration to me and her ‘no filter’ attitude to life is something I wish we all had: no prejudices and no fear.
Andrea: “We were told: ‘oh he’ll never do x, y and z’. But they didn’t tell us what a world of love Woody (9) would create around himself, how he would draw people in to just love him. How he brightens up people who are sad, touching their arm and looking deep into their eyes and then laughing his amazing huge big laugh you just can’t help joining in with.”
Hollie: “Kade (19) is somewhat famous in our little town of Smyrna, TN (USA). He has changed my life, as well as a ton of others, one smile at a time.
“He’s taught me to love without condition. He doesn’t care what color, religion, political affiliation, or sexual identity, etc. He will give you the same love and smile. We’ve actually had t-shirt’s made that say #lovelikekade and many people in our community have ordered them.”
Courtney: My saying is I learn more from him even though the world sees it the other way. He’s so much more than the doctors, therapists, and “experts” tried to make me believe. He’s also really funny and sweet!
Ashley: “When Abbigail (5) was diagnosed the doctor told me she would probably never walk, but she is making great strides in therapy, passing all expectations. As impatient as she is, she has taught me to be patient.
“Also, our angels’ laughs are contagious! No matter what kind of day you are having all they have to do is smile or laugh and it brightens your day.”
Monica: “I grieved hard when Arbor (1½) was diagnosed. The research I did and the information provided by the doctors was terrifying.
“I’ve never been so excited or so proud as I am when Arbor figures out how to do something another child her age would have already mastered.
“Every laugh is so pure, every smile more beautiful than the last, and every single milestone is a PARTY! Everyone who meets her falls head over heels in love, and I wouldn’t ask for her to be any other way.
“I am BLESSED to be a special needs mother.”
Lisa: “Montana is 15. She has been the biggest blessing in my and several others lives. I never dreamed how much I would learn and grow with all the challenges and joys she has brought. People speak of a cure; truly I don’t believe a “cured” Montana would be any more of a blessing than she is now, as she is. Sure, it would be great if she could talk, move without difficulty, be free from seizures and all of that, but I would I lose her smile? Her ability to happy, no matter what? Her snuggle and love at almost 16.
“She is a challenge, a blessing and a gift, just as she is.”
Paula: “When Broden (2½) was first diagnosed, I grieved for the life he wouldn’t have. He would never play ball like his brother. He would never be in a school play, or fall in love, or go off to college. He would never get married and have babies of his own.
“But as he got older and developed his happy personality, I began to see that he has the thing we all want – joy. It’s what we want for all of our kids – Angelman, neurotypical or any other human condition. They have it.”
Janet: “When Autumn (10) was diagnosed at two, it was Labor day weekend and the genetic doctor asked her nurse not to call us until after the weekend not to ruin our holiday. It seemed grim at the time, but Autumn has been nothing but a blessing.”
Hanan: “I’m a sister to an angel, Jebril (20). Simply put, having a sibling with special needs teaches you early in life that life isn’t always fair and that’s ok. That even when things aren’t ‘optimal’ you can always make something out of nothing.
“Being Jebril’s sister has taught me about strength and how you should never underestimate ANYONE. He’s taught me about Love – not only how to love but how to be loved; because let’s face it, angels love better than anyone in the world.
“Being an angel sibling has taught me how to get urine smell out of ANYTHING! He’s taught me how to laugh even when I’m crying. He’s showed me how to always have hope. And to always believe in people.”
Lori: “My angel, Ashley, is 33 years old. Every day I am so thankful that I was chosen to be her mom.
“She has taught me so much more than I could have ever taught her. She has taught me about priorities and what really matters in life. Because of Ashley, I have learned that spending time with the ones you love is really the most treasured gift. I’ve learned that there’s power in the communication of a smile, and that a hug speaks volumes. I am always amazed at how many lives my daughter has touched, all without speaking a single word!
“God truly gave me a beautiful blessing the day she was born.”
Kendra: “I remember making a light-hearted comment early on after our diagnosis when we first got a handicapped placard for our car. I told a family member “The best part about having a disabled child is getting to park in the handicapped spots.” She responded “yeah that’s the only good part.”
“I wanted to share with her all the million blessings my son has brought to my life. A few that come to mind are:
“Having a non-verbal child has brought more patience and problem solving into my home. We listen with our whole bodies rather than just our ears and we’re learning a new language – AAC [Augmentative and Alternative Communication]! We are bilingual now!
“Having a child with severe physical limitations has increased my ability to see beauty in simple things. I can appreciate so much more the ability to pick up small objects, to bend my knees, to dress myself. And has made those moments such a celebration in our home when our kids hit those milestones.
“We have met so many wonderful families and many children with AS who are dear friends to us. We would not have met them had it not been for this diagnosis.”
Donna: “Last year we had a birthday party for Kitty’s fifth birthday. Parents are always talking about how much they dread children’s parties because there’s always one kid who eats too much cake and throws up, and another who doesn’t know how to share and makes all the other kids cry.
“Kitty’s party wasn’t like that at all. She goes to a special school so all her friends have a disability of some kind; autism and Downs’ Syndrome seem to be the most common. They all basically spent two hours hugging each other and laughing. All of them accepted each other for who they were. No one was excluded. The whole party radiated love, affection and happiness. It was one of the best experiences of my life.”
If you would like to find out more about Angelman Syndrome, or donate toward finding a cure, visit www.cureangelman.org