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My husband and I were told that our son may have Down syndrome because of a heart defect
that was detected in utero. But even though we had an idea, nothing could fully prepare us for how our lives were going to change when we had a child with special needs.
It's been three years since he was born, and now I'm telling my story, hoping that other parents of challenged children can relate, and hoping that I can raise awareness and appreciation among all parents.
My son Peter was born with a heart defect and an undiagnosed abdominal complication that hindered his physical growth. I was force-feeding him via a nasogastric tube, but no one knew why he was having difficulty keeping food down, which was causing what doctors call "failure to thrive."
Peter had to undergo abdominal surgery at four and a half months, then we had to get him physically strong enough to endure open-heart surgery at six months old. I was overwhelmed, tired and stressed
, and I'm really not sure how I managed my way through his first year of life.
He's three years old now and continues to receive physiotherapy, occupational therapy and speech-language therapy. I just want to share a few things that you may not know about what it's like to parent a child with special needs.
1. Sometimes I feel alone.
This is not how I had planned my life. I look at other moms with their "normal" children and I can get a little jealous
. I deal with issues with my son that they will never have to contend with; talking, for example. It can be a struggle, because I have to work hard to get my son to understand with sign language or other nonverbal actions what we are trying to tell him or offer him.
Because of my need to connect with other parents dealing with the same issues, I became associated with the Down Syndrome Association of Sudbury in Ontario (I'm now the vice-president).
I assisted with the development of a website
and started a group for new parents so others can get up-to-date information regarding Down syndrome, discover community services and website resources, and connect with other parents. Being able to talk and compare issues and challenges really helps with the loneliness.
2. It's hard work.
As parents, we've had to assume the role of managing our son's health care. I work full time and I struggle to keep up with his appointments (he can have as many as three in a week, and ensuring that everyone can attend, including his teachers, his therapist and me or my husband, is difficult to organize).
On top of that, we research new therapies, read the latest books and ensure we are following the recommendations of his therapists and doctors.
I'm extremely lucky to belong to an organization that allows for flexible work arrangements
, appreciates my need to work outside of regular hours and understands last-minute appointments.
3. I know that not everyone appreciates a child with special needs.
If you're one of those people, please don't give me the look that tells me you are uncomfortable with children who have special needs, or stare and walk away when my son is attempting to interact with your child. This is hurtful.
I somehow feel obligated to tell people who may not already know that my son has Down syndrome. It's as if I'm giving them the right to say, "Oh well, then he can't be involved," or "Really? That's too bad." I shouldn't have to explain my son's diagnosis in order for him to be accepted.
My son is lucky to be enrolled in the local Montessori school, where he's included, sometimes with a little extra help, in all classroom activities and outdoor excursions
. We joked recently that his third birthday party involved 20 of his closest friends! The school is wonderful, accommodating and respectful, as are the parents. We are grateful.
4. I worry for his future.
When my son was born, one of my worries was – as selfish as this now seems – that we would have to take care of him for the rest of his life. I cried over the fact that he likely wouldn't have children or get married.
I still worry about what he'll do without us and who will take care of him. I worry about him being bullied
and missing out on friendships because other children can sometimes be mean, particularly if they haven't been taught to be respectful and accepting of those with differences. But I'm learning to deal with these potential events as time goes by and as I learn more about the syndrome.
How a Down syndrome conference helped
This past May, my husband and I attended a conference held by the Canadian Down Syndrome Society. I was a bit afraid to go because all the information can be a little overwhelming. But I'm glad I did: It gave me a new view on Peter's potential and how great his life can be.
The keynote speaker, Marlee Matlin, a hearing-impaired actress, delivered her inspiring story about her disability and how she beat the odds to become an Academy Award–winning actress. And all the children and adults with Down syndrome who were actively engaged at the conference changed my perspective.
I felt a sense of relief and normalcy. We will do all we can to ensure our son will be as independent as he can be
and will achieve his true potential: He will have the opportunity to be employed, will continue to have friends and be surrounded by people who love him, and may get married if he wants to.
5. The "r word" is offensive.
I cringe every time someone uses the "r word" as a joke or in day-to-day conversations. My son and others with Down syndrome are people, and not lesser, imperfect members of society. People need to be respectful of others and stop using derogatory words. It is unfeeling and arrogant to imply that those with Down syndrome are deficient and less than "normal."
6. I don't need to hear "Everything will get better" or "It gets easier."
Sometimes I just need some empathy or someone to listen to me
, instead of a dismissive attitude. I need people to appreciate that Peter does have unique challenges.
For me, the baby years are still lingering: We still require a change table, I'm not sure how we'll manage potty training and he still sleeps in a crib to ensure his safety.
I know that he will grow out of the crib and I know that he will be potty trained eventually. I just want others to empathize and appreciate that it will take a little longer and require more patience.
7. I feel guilty.
I feel like I need to find the time to read every book related to Down syndrome, otherwise I could be missing something important and not providing my son with everything he needs.
I feel guilty that I have disappointed others. I was lucky enough to find my husband, my greatest support system
, without whom I would not be able to do this. But I also feel like, as a wife, I let him down. Advocating for a son with special needs is not what he expected his life would entail. I feel responsible somehow for the fact that he now has to care for a son who is a challenge and requires a lot of extra patience.
I feel guilty because I can be too hard on my other son; I expect that he should understand and know better because he's older and doesn't have a disability. At this stage, the boys wrestle, play, laugh (and sometimes fight, as most young brothers will do), and that's all I can ask for.
But I sometimes think I have given him a sibling he needs to take care of, protect and look out for – for the rest of his life. I don't want him to feel like his brother is a burden. I want to ensure I am raising him to be accepting and respectful of others
, so that ultimately these two boys can be best friends. He's already a protective older brother. We are so proud of him.
8. My husband and I are proud of our child with Down syndrome.
Peter is our son, and he happens to have Down syndrome. He is not "the kid with Down syndrome" and he does not "suffer" from it. We have one goal: to promote dignity and respect
for our son and for other children who need more assistance than most in society.
We are not victims and we don't need pity. Our son is happy and healthy and, in his three short years, he has taught us a lot more about life and living than we can ever teach him.
Raising a child
with special needs has changed our lives. Our views on disabilities have changed, we have more patience and we can empathize with other families who are also struggling with a family member who has a disability.
When I'm tired, I remember the moments when he has said something new or completed a task such as walking, running down a hill or signing a new word that has taken him months to master.
When I'm feeling a little overwhelmed
, his smile, which is infectious, and his laugh, which is always from his belly, make everything else that may be a challenge, disappear. And even though it's a daily struggle, we were chosen, we love him and we wouldn't have it any other way. We feel blessed