“Every child is gifted they just unwrap their packages at different times.”
Dear Young families with special needs children I want you to remember this…
I had a choice to test for certain conditions when I was pregnant with my daughter, Amy, but I turned them down. My reasoning was that the results wouldn’t matter to me one way or the other. I, of course, would love my child regardless. So, on June 27, 1994, the day I first touched my beautiful daughter, was the same day I found out that my baby had Down syndrome. Because she was premature, I had to wait a week to actually hold her in my arms. That week was very difficult, as I just wanted to take my child home and keep her close to me.
According to the National Down Syndrome Society, Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21. It affects a child’s development and physical appearance.
A nurse in the hospital gave me advice that I want to pass along to all you young parents who are trying to grasp with the reality of your child’s diagnosis.
The nurse told me, “Take it one day at a time.”
To this day, her words echo in my head.
Medically, Amy has endured some serious challenges.
Amy was two-and-a-half pounds when she was born and eight weeks early. Thankfully she was still healthy even though she was underweight. As she got older, she wasn’t performing some of the milestones as other kids. They had her tested and found that she had Cerebral Palsy on her right side. Then shortly after, two years or less, she was diagnosed with Hypothyroidism, so she is on medication for the rest of her life. When she was four years old, she was diagnosed with leukemia and underwent two and a half years of treatment.
How did Amy handle all the adversity? Well, Amy doesn’t even know she’s been through anything adverse. She is the happiest person we know. But Amy’s condition has definitely been a challenge for me, even when she is in good health.
When my nieces, my nephews or my friend’s children, who were the same age as Amy, would reach milestones, I would always compare Amy to them. Don’t do that! I know, it’s tough to get over the fact that while your friend’s children are crawling or talking your child is not able to do the same. It took Amy three years to walk! Your child will meet all those milestones but he or she will do it on their own schedule.
Remember, “One day at a time.”
Also, I don’t care who you are, I know it is very hard to accept that your child isn’t going to live the life that you think they should live. But you must accept it. There is nothing you can do about it. You can’t change it. It is not going to go away.
Your child may be differently abled than Amy but for her, I thought it would be best to give her the same opportunities as my other children.
Amy still wants to sing and dance and run and swim and all those things, she just does it at her own pace.
In fact, in high school, the swim coach included Amy on the team. I was a little scared the first time they let her go in the deep end because I am afraid of water, but they had people all over to pull her out if needed. In the end, she became such a good swimmer that she no longer required one-on-one attention while she was in the pool. She also ran track, the 50-yard dash. And her coach made an adjustment to the hurdles for one year so she could race.
I want to tell you that everyone is going to be kind and compassionate. But the truth is that some people are very welcoming and other people are not, but I don’t care anymore and you shouldn’t either. Focus on doing what is best for your child.
Amy was in chorus and she was in sports. She did all the activities that she wanted. I think the benefits were immeasurable. She has a lot more confidence and like any child who participates in team sports, she is a better person for it. Her experiences enriched her life as well as the lives of her teammates and friends.
You might think as our children grow into adults, it gets easier. It doesn’t. Understanding social cues are a problem. Trying to understand what’s right to say, what’s wrong to say, what’s good, what’s bad, who is good, who is bad and why is a constant struggle. You can’t get angry because they just don’t understand. If you get angry, it is detrimental. Patience has to be number one in my book.
Like I said before, “One day at a time.”
Amy is 25 now. She is in a day program that volunteers daily in the community. She is also involved in theater, chorus, bowling and several social groups, which she loves.
I want you to know that even though your child may have a disability, it doesn’t mean he or she will not be happy. As long as a child is loved and cared for how can they not be happy?
Amy is not grumpy. She is a joy to be around and I love spending time with her. She always asks to do things that she likes. I would say 95 percent of the time she gets what she wants because it’s nothing extravagant.
My biggest fear now is not only her happiness but also her safety. That will probably never change for me or for you. That worry is just a part of our lives as parents. I feel the same way about my two older children.
Through all the ups and downs and the challenges and surprises, most of all I want you to know that the love you feel for your child that is strong and so overwhelming that you can’t put into words, that is what makes being a parent so special. That is what family is all about. It’s not when your child achieves. It is not what your child accomplishes or how they stack up against anyone else. It’s about love. On the toughest days, the days that test your patience or make you cry, that is what you need to remind yourself. Because the love I felt for my child when I was pregnant and didn’t know her condition, is not only even more present each and every day but very much returned.
From one parent to another,