Thursday, October 25, 2012

Down syndrome: How I found out

This is the last post I'm doing for Down syndrome Awareness month. For that reason, we'll take another trip back in time.

When I was pregnant with Jaycee, I had no idea she had Down syndrome. I didn't do the optional screenings for it while I was pregnant. My ultrasound did not reveal anything. It missed the markers for Down syndrome, the hole in her heart, everything.. That was when the 4D ultrasound wasn't done regularly. So when Jaycee was born, I was expecting the regular baby experience like everyone else.

Jaycee was born and I still didn't notice anything. It was my first child. She looked all puffy from delivery. I was clueless. Much later that day, the pediatrician came to the hospital to check her out. That was my first piece of bad news:
   Your baby is having trouble breathing. She's under an oxygen hood. We've got a helicopter on the way to transport your baby to a NICU. (No big deal I thought. She is 3 weeks early.) I think I heard a heart murmur so they will check that out at the hospital. (I thought-Lots of people have innocent heart murmurs. This is still fine.) And I'm worried about some things on her body that indicate a genetic issue. Were you told about anything in the pregnancy or does anything run in your family? (Oh no! This is not a normal experience! Something's wrong.)

The pediatrician was concerned and compassionate. Maybe it helped that the pediatrician was a woman. I was cautiously optimistic when I left to go to the NICU. I clung on to hope because it seemed impossible to think something could be wrong.

The next day, my husband and I sat by our baby in the NICU. She was hooked up to wires and all sorts of stuff. It looked serious. It looked like we had a sick baby. I was scared to hold her. She seemed fragile. A group of doctors approached our bed. The main doctor was nice but to the point. He said: "If you notice, your baby doesn't look like your baby pictures (pointing to me) or your baby pictures (pointing to my husband). We are going to run tests but I don't need a test to tell me what she has. She has Down syndrome. She has many classic signs. Do you how she is a floppy baby? I can move her around and she doesn't resist me. (At this point he flops her around in different ways.) She has a line across the palm of her hand. She has a flat nasal bridge. There's extra skin on her back. She'll walk and talk but she'll get to a certain point and that will be it. You'll be raising a child all your life....."

I asked questions. I held it together until everyone left. I was shocked. I made it all the way out to the lounge where our parents were sitting. Then I had a complete breakdown.


There's no good way to find out your child has something wrong. It hurts no matter what. The part that broke me was hearing that Jaycee wouldn't look like me. It made me feel so disconnected from her. It took me a couple of years to "see" that Jaycee did look like me in some ways. I understand now what he was trying to say, but it was a horrible way to say that she would have features of Down syndrome. When he pointed out everything wrong, it was all I could see from that point on--the "flaws."

I've been trying to think of a good way to break the news but I'm not sure there is one. I think the most important thing is to sound compassionate and caring. You don't want someone to rattle off a bunch of facts and be matter-of-fact. Peoples lives are forever changed by this news and what is said initially sets the emotional direction. It's one of those conversations that I'll remember forever like so many other moms.

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Thursday, October 18, 2012

A Letter to Myself...Back in Time

Have you ever wished that you could go back in time and give yourself advice? I hope I'm not the only one anyway. In honor of Down syndrome awareness month, I have written a letter to myself in the year 2006 from myself in the year 2012.

Dear Evana in the year 2006,

Congratulations on the birth of your baby! I know you are feeling all sorts of emotions due to hormones, stress, and shock. You never expected to have a baby with Down syndrome at age 25, nor did you know it was even a possibility. Your emotions have you questioning lots of things. You wonder if your husband will stay with you (he will) and if Jaycee will live through all these challenges (she's still alive today). Due to the doctor's description of her, you wonder if Jaycee will even look like you or Jason. When she's a toddler, you'll find a mole on her head one day in a similar location to your own and it will change your life. Right now, you are under much stress so here is some advice.

The first thing you need to understand is that you will always, always have times when your emotions get the best of you. Right now, you believe that you haven't fully accepted Jaycee's diagnosis because things are bothering you. It will take you months before you realize that things are always going to come up that will cause you hurt or a sudden emotional reaction. The stares, comments, and cruel behavior aimed at Jaycee will always cause you pain. But, the good news is that the emotions do get less intense as time goes on.

The next thing I'm going to tell you is really important so fully digest this. Your first job is to love and nurture Jaycee,  not to be her developmental specialist. You have a team of people who help care and treat Jaycee's medical conditions and delays. As part of their job, they will offer ideas on how to help her. Don't let it overwhelm you. You are her mother first and foremost. You are not her teacher, nurse, or therapist though at times you have to be all of these things. Because you are trained as a speech-language pathologist, your brain will want to automatically go into therapy mode with Jaycee. You will see areas that need worked on and you'll take it on yourself to do much of it. Whenever you get stressed about things you need to do for her or the skills you need to work on, stop and take a break. This shouldn't be your main focus as her mother because when things happen much later than expected, you blame yourself. Those times of limited success aren't your fault. Six years later you'll still be trying to convince yourself of that.

Finally, take time for yourself. Motherhood brings on much responsibility. Jaycee's heart condition and special needs have multiplied that more than you'd ever imagine. You feel an enormous amount of pressure waiting for Jaycee's first open heart surgery. I'm saying first because unfortunately there will be another one. Don't look at this first heart surgery as the endpoint of her medical problems. There will be many scares and problems coming up. You will give more of yourself than seems humanly possible. Because of that, you need to remember that you need to take care of yourself. Don't make your husband wait for months for a date night. Given your mental state most of the time, you should feel honored that he wants to spend time with you! Time away from your home responsibilities will re-energize you. Don't let yourself get so wore down before you finally submit to a break. Take them preventatively before a mental breakdown occurs.

Every time you get overwhelmed, get this letter out and reread it. Remember to laugh. Enjoy your life. Count each day as a blessing.

Sincerely, The 2012 Evana
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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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Thursday, October 4, 2012

Down syndrome Questions

October is national Down syndrome awareness month. You probably already know that Down syndrome occurs when there are 3 copies of chromosome 21. But over the years, I have been asked all sorts of questions about Down syndrome. Here are a few of the more interesting ones:

Is there something wrong with you because you had a baby with Down syndrome?
No. Nothing is wrong with me. There is no medical reason as to why I had a baby with Down syndrome. It just occurs. I didn't do anything in the pregnancy to cause it. It's something that doesn't happen very often but could potentially happen to anyone. The chances of having a baby with Down syndrome increases with maternal age but the majority of babies with Down syndrome (80%) are born to women under 35. I was 25 years old when my daughter was born.

Isn't Down syndrome hereditary?
Down syndrome is a genetic condition because it involves the DNA. Genetic and hereditary are not the same thing. There are actually 3 types of Down syndrome. A rare type of Down syndrome that can occur could be due to a parent being a particular carrier, but this is a small percentage of people with Down syndrome. When I had my daughter, I was told that I had a 1% chance of it happening again. So, in general Down syndrome is not hereditary.

How severe is your daughter's Down syndrome?
I get asked this once in awhile. There are no severity ratings with Down syndrome. You either have it or you don't. There is not a "mild case" of Down syndrome or a "severe case" of Down syndrome, although sometimes I hear parents saying this. There is much variability within individuals with Down syndrome. Think about your own children and the differences in their abilities. People with Down syndrome are no different. While some may have more significant delays than others, there are no severity ratings given. However, the intellectual disabilities (formerly called mental retardation) that people with Down syndrome have can be classified as mild-profound.

Is your daughter always happy?
No! She has a full range of emotions. Jaycee is a very happy and sweet girl. This is often said about people with Down syndrome. But, she has feelings just like everyone else. She gets scared when she hears loud noises. She signs "scared" when she sees tigers. She gets upset when I won't let her have seconds or thirds of food. She cries when her grandmas leave her (even though she sees them at least weekly). Jaycee gets excited when she sees her cousins. When she doesn't want to do something, she finds ways to let you know. She has likes and dislikes just like anyone else.
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