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On Raising Becca

By Shelly Garner

When I was asked to write this article there were many things I thought of writing about. First I thought, I’m not an expert, what do I have to offer in terms of what I know. And then I thought, well, I have lived with a child with Down Syndrome for her whole life, if I’m not an expert on my own child, who could be? I could have written on the statistics of health issues with children like my daughter. I could have written on the chances of her having this or that problem, or of when she was going to be potty trained or when she might learn to read but that would not be what raising a child like Rebecca is really all about. My daughter has Down Syndrome, that doesn’t mean she is Down Syndrome, she has it, and it’s only a small part of who she really is.

When she was born there were many complications. The doctor told my husband, while I was still sleeping off the effects of anaesthesia, that they were going to test for Down Syndrome. My husband told me this the next day, but there was no way my daughter had that. She was perfect, at least as perfect as her two sisters had been. I found out the next week that indeed, she did have DS, but she also had a serious heart defect that very likely could kill her. Now, what do you think was the most important news? The fact of DS took a big second place and that is pretty much the way it has been ever since. She has survived many close calls, extensive heart surgery, and at least six other surgeries, one in which she coded but came back to us. But in all that time, she has known she was loved beyond measure, which I am pretty sure is the most important thing in all your relationships in life.

I do believe, that you must work very hard to have a child with DS develop their full potential. And these things are not offered to you on a plate, you must look for the help you need. Becca had early childhood intervention and a marvellous interventionist who loved her and definitely wanted the best for her. We went to the Wascana Rehabilitation Centre in Regina, quite often in the first years of her life, for physical therapy and occupational therapy; we joined the Saskatchewan Association for Community Living, which sponsored us to go to seminars where we learned so much. But you also have to temper learning with relaxing and enjoying this child. Knowledge is nothing if you don’t know how to use it. Becca started school at three years of age, which is normal for a child with many diagnosed disabilities. I know there were children in her class with autism and global learning delays and also others with DS.

I wanted her to have the contact with other children and also to learn how to behave in an environment where she must listen. She had remarkable teachers there, once again who loved her and wanted the best for her. But you must make sure that even though your child is loved and given good skills, that you follow your instincts as to what you know they need. In my case, I knew that Becca would go farther if she were integrated fully into a regular classroom. I had to make a decision to take her out of that school and put her into another one, which was a difficult decision but one I was very glad I made. We found in our own neighbourhood school an environment where Becca is definitely disciplined but where she has been nurtured to her full potential. They have found many computer programs that work to her advantage and she was given a very good routine, with an aide from heaven, who was with her for four years. Because Becca needed speech therapy, this aide went with her to learn how to help her on a daily basis, and Becca thrived on this environment.

Becca has had an incredible life so far. She is now 12+ years old and is in Grade 6. She plays the piano, just started taking baritone in the school band, reads very well, swims, tried guitar lessons, although stretching her fingers around the neck of a guitar and her mind around the music on the page was a little too much for her and is at least as good on a computer as most kids her age. But even more important than all this, she is a happy person, a fulfilled person, one who receives love and gives love. This doesn’t mean that she isn’t a pain in the butt sometimes, she fights with her brother and mouths off, like most kids in the beginning of puberty but the important thing to realize is that this kid is the same as any other. You are going to have problems, you are going to get mad, frustrated and maybe even feel like giving up sometimes. But you know what, everyone feels like that. Every parent feels like that.

We haven’t finished raising this child yet, but I am proud. Very proud that I have done what I could for my girl and even more proud of her. She has worked so hard for every little thing she has accomplished. But I would have been proud of her no matter what she had done. Because she is my child and I love her and that is the only thing that is important in the end.

I have made a list of things that I consider the most important to remember.

1. Love, love, love that kid.

2. Relax, enjoy, have fun.

3. Remember, the experts don’t always have every answer, and they change their minds a lot. Listen to yourself, if it feels like the right thing to do, then do it. Sometimes, you have to let an idea sit for a while and then go back to it.

4. Get involved, go to the school, talk to the teachers, talk to other parents, you are not alone and other people care too.

5. Let your child try, if they don’t try they can’t do it, failure is a part of life, not trying is more of a failure. Other people may tell you that it may be impossible for your child, don’t listen.

6. Do not look back, do not regret, if you make a mistake, if you get mad, forgive yourself, get over it, have a nap and wake up renewed, ready to try again.

7. Love yourself, take care of yourself. If you aren’t okay, they you aren’t there to take care of your child. Take time off now and then, go for a walk.

8. Thank your higher power for this gift that you’ve received.

I personally feel that having Becca was one of the best things that ever happened in my life. I hope that if you walk this same path that you will feel that way also.

Remember:

“It is difficult to say what is impossible, for the dream of yesterday is the hope of today and the reality of tomorrow.” - Unknown

“To become what we are capable of becoming is the only end in life.” - Robert Louis Stevenson

“If you think small, then your limits have already been established.” - World Peace

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Shelly Garner has resided in Moose Jaw most of her life. She is married to Brian and has four children, two living at home, two grandchildren, two dogs, a cat and four fish tanks. She is a certified reflexologist, works as an office assistant for a local specialist, is treasurer for the Moose Jaw Branch of the Saskatchewan Association for Community Living and belongs to the Saskatchewan Family Network, a grassroots alliance of parents whose children have differing abilities. She is an avid gardener and preserver, who loves to share with family and friends.

Shelly is a regular contributor to Gwen’s Healing Garden Newsletter and writes gardening articles. She may be contacted at (306) 693-0571 or e-mail: b.garner@sasktel.net

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