Friday, October 12, 2012

Good advice, Bad advice

Down syndrome awareness month continues! When you have a baby, people are quick to give you all sorts of advice whether you want it or not. From something as simple as feeding a baby all the way to immunizations, people have their own ideas about these subjects and they are willing to offer them to anyone who will listen.

I found the advice I received about Jaycee was multiplied. Because she came with several diagnoses, she came with a group of professionals telling me things about her and her needs. Some people knew what they were talking about. Some people thought they knew what they were talking about but didn't. So here's my top good and bad pieces of advice I received when Jaycee was a baby.

The Good Advice
1. Get your child all the help they need. When Jaycee was born with an extra chromosome, she was born at a disadvantage. She was already "behind" the other baby laying beside her in the nursery. There are many programs out there to help children like Jaycee reach their potential and achieve goals. She started the early intervention therapy program at just 2 months old. Over the years, I have sought out private therapy sometimes driving an hour 1 way just to help her attain a goal or skill that she was struggling with. Sometimes people made me feel like I was out of my mind for doing those things, but it was all for Jaycee. I didn't enjoy making long trips to Easter Seals or having multiple therapy appointments a week. I would have loved to have afternoon naps and easy breezy days with nothing to do. But, I knew those busy times of self sacrifice were only seasons for me that would be over soon and would hopefully bring help to Jaycee.

2. Seek out support. I'm a very independent person. I tried to hold a lot in during those early months when I was trying so hard to process everything. I'm not one of those people who will share my deepest emotions with just anyone while it is occurring. After Jaycee was born, I was open and honest with only my husband. Looking back, I am sure he would have appreciated me having another person to cry to and vent to when needed. I should not have put all of that on him. He was hurting too. Over time, I did find a few trusted people like my mom and sister-in-law that I could call and share all of my wild feelings and thoughts with. They listened, prayed, and gave me time to say whatever I needed. I found that sharing my pains with someone else made me feel better. I believe it's nearly impossible to parent a child with special needs without someone in your corner cheering you on.

3. Trust your motherly instincts. Yes, your child may have a diagnosis associated with them, but you are still their mother. As the mom, I know Jaycee best. I know what every little noise and gesture mean. I know when I see changes in her that aren't typical for her. I have learned to trust my instincts and speak up when I feel that there is a problem with her-- be it medical or school related.

The Bad Advice
1. Treat your baby like anyone else. This is a common phrase I have heard in the Down syndrome community. I never understood it from my perspective. Every time I heard that I should treat Jaycee like a typical baby, I wanted to scream. Instead I just smiled. I got good at a fake smile. It seemed totally impossible to treat Jaycee like anyone else. She had a heart defect, low muscle tone, and went into congestive heart failure when she was a couple of days old. She required all sorts of things that typical babies don't require (a feeding schedule, being woke up for feedings, higher calorie formula, medications, therapists, home health).

Even today, I do many things with Jaycee that most people don't have to worry about for a 6 year old. I can't leave my front door open or Jaycee will try to leave. Our doors are always shut and locked. She can never, ever be left outside alone. She still has to be reminded to use the bathroom. I can't treat Jaycee like anyone else or we'd have a major problem.

2. Don't compare your child to anyone else. This is good advice but who can do this??  For me, it was impossible not to compare Jaycee to other kids near her age. When I saw my younger niece take steps and talk long before Jaycee, it was hard. I didn't "try" to find someone to compare her to but when the ages are known, her delays were obvious. I took her to a baby/toddler play group a few times but I had to stop. It was too hard for me to see the other kids much more advanced than her.

The better advice I would say is that, when you see your child falling behind others, remember where she started out and how far she's come. It's not the comparing that's the problem. It's the emotions that come when the comparisons are made, which is why you need support!

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