Party of Ten

A while ago I was interviewed by a middle-school student. This student was working on his Disabilities Awareness Merit Badge for Boy Scouts and needed to interview someone regarding their child's disability. It was my pleasure, as always, to talk about Erin :). I decided to post it here on the blog for others to read as well. (Names have been removed for privacy)

*Edited on 8/16 to add that my interviewer, Alex, gives permission to use his name on my blog AND he did indeed earn his Disabilities Awareness Merit Badge! Congratulations, Alex! That is a lot of hard work and you should be proud. On a side note, Alex's charming sister, Victoria, took a liking to Erin's princess picture, which I sent to Alex, and she is keeping it safely in her room. So sweet :)

Hi Alex!

I think it is great that you are working on your Disabilities Awareness merit badge! I am also thrilled that you want to find out more information about my daughter, Erin, Down syndrome, and how her disability affects her and our family! I will do my best to answer your questions.

First, I want to give you a little information about Down syndrome. In 1862, a physician named John Langdon Down recognized that some children shared similar facial features and cognitive delays. Based on these similar features, Dr. Down identified the syndrome, naming it after himself. Because Dr. Down did not have Down syndrome himself, we refer to it today as Down syndrome rather than Down’s syndrome. Until the middle of the 20th century, the cause of Down syndrome remained unknown. Then, in 1959, Dr. Jérôme Lejeune, a French scientist, discovered that Down syndrome resulted from an extra chromosome. A chromosome is a threadlike structure found in the nucleus of each cell. Our chromosomes carry our genes, which are what gives us our hair color, skin color, eye color and all the traits that make us unique. An individual with Down syndrome has 47 chromosomes in each cell of their body rather than the usual 46. Chromosomes also come in pairs (one from our mother and one from our father) which we number, 1 through 23. (So, 23+23=46). The extra chromosome found in the cells of an individual with Down syndrome is always number 21. Therefore, people with Down syndrome have three copies of chromosome 21 rather than two. I have attached a picture of Erin’s Karyotype, which is a picture of her chromosomes. Can you find the extra 21st chromosome? Dr.Jérôme Lejeune, the scientist who discovered the extra 21st chromosome, loved working with children who had Down syndrome. He knew they were worthy of dignity and respect just like everybody else. Dr. Lejeune was a great friend of Pope John Paul II, and in 2007, the cause for canonization was opened for this great scientist. Maybe someday we will call him Saint Lejeune!

Now, on to your questions...

1) What is it like for your daughter to have Downs Syndrome? How does it affect her day-to-day living?
Erin is four years old and enjoys many of the same activities as other four year olds. She loves to play with toys, listen to books, watch TV, listen to music, dance with her sisters, wear princess dresses, play at the playground and eat delicious foods. At times, however, it takes Erin longer to learn the same things as other kids her same age. One reason Erin learns more slowly is because she has what is called hypotonia, which is low muscle tone or muscle weakness. Hypotonia can affect large muscles (such as those in arms and legs) as well as small muscles (such as those in the mouth and tongue), and even muscles on the inside of her body (such as intestinal muscles). For example, it took Erin longer to crawl, walk, jump, run and talk than most children. If you want to understand how low muscle tone can affect your hands, try this experiment: Put a pair of socks onto your hands, then try to tie your shoes. It is not so easy! Speech is especially difficult for those with Down syndrome because we have so many little muscles in our mouths, lips and tongue. Did you ever receive a shot of Novocain at the dentist office? If so, you have felt the numbness in your mouth and you probably found it difficult to form the sounds of speech. That sensation is similar to how somebody with hypotonia feels when trying to form the sounds of speech. If you have never experienced the numbness of Novocain, you could try this marshmallow experiment: Put a marshmallow into your mouth, chew it up a little bit, then try to talk. If you do that, you will have a better idea of how difficult it is for those with Down syndrome to form the proper sounds of speech. Another reason Erin learns more slowly is because she has cognitive delay. This means that her brain works more slowly, at least some of the time. It is especially hard for Erin to learn by listening to instructions. It is much easier for her to learn by seeing the instructions. Because she learns best by watching, we make sure that most of what she learns is done visually. For example, by the time Erin was two years old, she could only speak about 10 words properly. However, she knew 200 words by using American sign language, which she could watch and learn very easily! We have found that it is very important to recognize the fact that Erin learns more slowly and in different ways. It is just as important to remember that she does indeed learn, in time, at her own pace.

2) What do you need to do for her that her brothers and sisters can do for themselves?
There are a few things that Erin cannot do that other typical four year olds can do. For example, she cannot jump with two feet off the floor, say as many words as other children her age, use the potty all by herself and dress herself. Erin can do much more than her younger brother, who is almost two, but not as much as other four year olds. It is important to know that she will learn these skills in time, just more slowly. We try to encourage Erin to do as much as she can by herself. For example, she has learned to use a spoon and fork, brush her teeth, make the sign of the cross when we pray, put away her toys, color pictures and ride a tricycle, just as other children do. One way we can encourage Erin to learn new skills is to allow her the extra time she needs to practice. We have to be very patient at times, but it is better for her to practice doing these skills by herself so that she can learn to be more independent.

3) How does her having Downs influence how other people see her? Do they treat her differently?
How other people treat Erin, because of her Down syndrome, is the single most difficult part about her disability. Most of the time, people who treat Erin differently do not understand what Down syndrome is. Some may not understand that she learns more slowly, and therefore, they may think that she does not learn at all. Perhaps they are even afraid of her, because she looks and acts differently. All of this can be difficult. One time, I noticed that an adult was speaking very loudly to Erin. I think it was frightening her because she didn’t know why that person was shouting. I had to explain that Erin does not have hearing loss, and there was no need to shout. Once I explained this, the adult began speaking in a normal tone. I also have to remind people quite often to give Erin the time she needs to respond, and to allow her to do things for herself. In our busy, fast-paced world, we are often impatient. Sometimes we all need to remember to slow down and give those with disabilities the time they need to do things for themselves. We have found that having Erin in our family has allowed us to learn this important lesson. She has taught us that reaching milestones more slowly, or having to work harder to learn a new skill is not a sad thing. In fact, when that new skill is finally learned, after much hard work, we all celebrate even more!

4) Do you think that the government does enough to ensure that people with Downs have an easy time getting around? Are there enough accommodation's made for those with Down's in terms of access?
I do believe the state and federal governments have done a lot to make life easier for those with Down syndrome, and other disabilities. Having Down syndrome does not usually limit one’s ability to walk, so most adults do not need to use special ramps or handicapped parking spaces. Because most adults with Ds do not drive, many get to their workplaces by using public transportation –usually buses. Many states also offer financial help to those with Ds, for a variety of therapies or medical conditions, such as speech or physical therapy. When Erin was six months old, she needed open-heart surgery to repair a hole in her heart (about half of all children born with Ds have a heart defect). This procedure costs thousands of dollars. Although we had medical insurance, it did not cover the full cost of this surgery. Our state government provided some money, called Medical Assistance, to help with this cost. Since then, Erin has been very healthy, so we have not needed Medical Assistance, however we are thankful that this program is available for those who need it.

5) What do you wish people who aren't familiar with Down's Syndrome knew about the condition?
When parents first find out that their baby has Down syndrome, they are often sad or worried. Then, as that baby grows, they discover that their baby, who they were so worried about, is very much like their other children in so many ways. I wish that people understood that Down syndrome is not something to fear. Children with Down syndrome give their parents, and others, so much joy! It is true that children with Down syndrome have to work harder than typical children, but hard work is not such a bad thing. Often, with hard work comes tremendous pride in the accomplishments that are made! Sometimes others may feel sorry for those with Ds, or their families. They may even take pity on them and think that somehow, children with Down syndrome are not as worthy or as valued as other children. That is simply not true. We know that God is perfect and He does not make mistakes. I wish that others understood that Children with Down syndrome are created in the image and likeness of God, just as other children. Additionally, I wish that others could understand that individual with disabilities can teach the world so many important lessons. When we care for others in need, we share some of God’s love. When we share some of God’s love, we have a better understanding for how much He loves each one of us, even with our shortcomings, imperfections or disabilities. Having Erin in our family has taught us so much about God’s unconditional love, and that is something that makes me very thankful!

Good luck on your merit badge, Alex. I’m sure you will do a great job working towards that award! I also look forward to having you back with MODG next year!

God bless,
Mrs. Delaney

Baird Night at the Zoo (Mike's work) is always a hit with the little kids. This year our oldest two kids stayed home because they had plans to attend the Shakespeare play, Much Ado About Nothing, performed by many of their friends and cousins.

Seamus was at the Milwaukee zoo two years ago, when he was just one month old, but of course he doesn't remember it. His eyes grew bigger and bigger as we saw the sites. And that's sayin' a lot, cause they're already pretty darn big. His eyes really became super-sized when he experienced the train. The train was definitely the highlight for Seamus.

The girls, on the other hand, were excited about the temporary butterfly exhibit. Mike kept teasing them that they came all the way to a large zoo, filled with exotic animals from all over the world, and they want to spend their time with a bunch of insects. As if we didn't have enough of those already in Wisconsin.

And to make matters worse, the butterfly exhibit is in a very hot and humid building. On purpose. Walking out of that building made the regular hot n humid 85 degree temperature feel like air conditioning.

But one look at this little girl's face made the sweltering insect and human terrarium all worth the time and effort.

Teresa, Bridget and Molly Grace caught many different kinds of butterflies. Erin was completely fascinated by it all.

Poor Aidan. He wanted to see the great apes and that was one of the only exhibits we didn't get to. Good thing he lives with a bunch of monkeys.

The merry-go-round was also fun for Erin and Seamus. Here is a picture of Erin spotting me as she came around.

Erin and Teresa

Oh, and another highlight for Molly Grace was the Sponge-Bob ice cream bar with the bubble gum eyes. She remembered it from two years ago and talked about it on the ride down. She was not disappointed : )

Until next time, thank you Baird!