Thursday, February 11, 2010

Down syndrome 101

I'm not sure if I've mentioned this before, but sometimes I think that Gavin and I give a "bad name" to the condition, Down syndrome. Gavin is way more complex than the "typical" child that has DS. It's not Gavin's fault. Besides having DS, he also just happened to suffer a severe stroke at the hands of some "medical professionals". Gavin should be doing so much more than he is able to do, but because of the brain damage that was done to him, he will probably never be able to do much more than he is already capable of doing.

When others tell me that they know of someone who has recently had, or will be having, a child with DS and they want to share our blog with them to help them out, I usually say; "Are you sure about that?! If you share our story with them they might just freak out and want to go hide under a rock!"

Gavin and I can't help it, but we are not a great posterboard for Down syndrome! I wish that Gavin were just the "typical" child with DS, but he's not. This is our story and it's been a difficult one! I would LOVE IT if Gavin could do ALL that most people with DS are capable of doing! But, like I said, Gavin is not the "typical" child with Down syndrome.

In fact, I feel the need to tell others EVERYTHING about what has happened to Gavin when they first meet him because I don't want them to think that having Down syndrome is a "life sentence". I don't want them to ever even think about the word abortion, because they don't want to have a child "like Gavin". I also don't want people to get the wrong picture about what DS is. Down syndrome IS NOT a life sentence! Having the blessing of a child with Down syndrome might just be one of the GREATEST gifts given on this earth! SERIOUSLY!

Anyway, I am in love with children and adults who have Down syndrome and I believe that they actually offer the world MORE than the "average" person does. So, I almost feel guilty that Gavin and I are giving Down syndrome a "bad name".

I know that I've mentioned before that I hate that our other children have to live the life of being a sibling to a child with special needs. When I say this, it doesn't mean that I feel sorry for them. I actually think that they will probably grow up more well-rounded and be more sensitive to others, and this is a great thing! But, I do hate that they have to feel burdened by certain situations, such as, having to explain what Down syndrome is, or tell others why their brother is the way that he is.

I thought that I had done a decent job of explaining to them what DS is and why Gavin is the way that he is, but now I'm not so sure.

A couple of days ago, Caleb had to bring some pictures to school to share with his class, because he was the "special person of the week". He picked out 10 pictures and he really wanted to bring a picture of Gavin alone and also a picture of our family at the annual Buddy Walk, which raises money for the DS association.

Our boys are not embarrassed to have Gavin as a brother.....AT ALL! They cherish him and get joy from sharing him with the world. They think that Gavin is an awesome brother and they NEVER feel embarrassed by him. EVER! I am very proud of them for this, because I know that many young people would feel embarrassed to have a brother like Gavin, but not our boys! And, this is such a blessing and gift to me as their mother!

O.K., back to Caleb at school. When Caleb shared his pictures with the class and told them that one of them was a picture of our family at the Buddy Walk, his teacher asked him if he could tell the class what Down syndrome was? Caleb is 6 years old and only in 1st grade, so this is a tough thing to explain for him.

The following is what he summarized for the class:

"Babies that are born with Down syndrome have something wrong with them and it makes them not able to do much."

Then his teacher said something like this:

"It might be that when the baby was born it didn't get enough air to it's brain."

While I am not upset with his teacher for what she said, this is NOT how Down syndrome occurs! Her explanation actually makes sense in a way, because those that are born without enough oxygen to the brain, can also have similiar complications as Gavin has had.

Caleb came home feeling unsure about what he said and what the teacher said and I think that it had him thinking and a little bit concerned. This is why I hate that our other boys have to live a life with a brother who has special needs! I don't want them to feel unsure of what to say or to have to worry about what to say! It's not fair to them!

I am proud of Caleb for coming up with what he did and I am also happy that the teacher tried to teach the class what Down syndrome is! But, I was a little sad that the information was not correct.

So, I decided to do a little lesson with our boys on what Down syndrome is and I thought that I should share it with all of you, because I'm sure that there are lots of misconceptions out there! I've been asked some crazy questions of what DS is, or why Gavin is the way that he is. I've even been asked "What is WRONG with him?" and also asked, "What did you do wrong to have a child like Gavin?" It's my job, as Gavin's mother, to educate people in his defense, so here I go!


People are made up of millions of cells. Our cells have a nucleus, which is the brain of the cell, and in the nucleus there are chromosomes. "Chromosomes are DNA wrapped around proteins to form an X-shaped structure."

The diagram above helps you see that:

1. Chromosomes are found in the nucleus
2. Chromosomes are made of DNA
3. Sections of chromosomes are called genes

"DNA or deoxyribonucleic acid is the genetic code that contains all the information needed to build and maintain an organism."

Here is a Chromosome Structure:

"Each organism or person, in this case, has a distinct number of chromosomes. In humans, every cell contains 46 chromosomes.

Other organisms have different numbers, for instance, a dog has 78 chromosomes per cell."

"A karyotype is a picture of a person's (or fetus) chromosomes. It's like a picture of a person's genes. A karyotype is often done to determine if the offspring has the correct number of chromosomes. An incorrect number of chromosomes indicates that the child will have a condition, such as, Down Syndrome."

The following are charts of Karyotypes below:

This one is a picture or karyotype of an average male (boy):


This one is a picture or karyotype of an average female (girl):


This one is a picture or karyotype of a person who has Down syndrome:


"Notice that a person with Down Syndrome has an extra #21 chromosome. Instead of a pair, this person has 3 chromosomes - a condition called TRISOMY (tri = three)".

"Trisomy results when chromosomes fail to separate - NONDISJUNCTION - when sex cells are created. The resulting egg or sperm has 24 instead of the normal 23". This causes each cell, of a person with Down syndrome, to have 47 chromosomes.

This is what causes a person be born with Down syndrome. It happens in the womb, when the cells are dividing and forming the fetus. It is not anyone's fault.....It's just the way that God made them!

I printed some of this information out for Caleb to bring to school. He said that he wanted the class to know what Down syndrome was. I'm sure that it will be way over their heads, but now at least they will know the facts!

I basically told him to say that God wanted to make Gavin and others this way.
And, I summed it up for him by telling him to say that:

1. People are made up of lots of cells.

2. Cells normally have 46 chromosomes in them, but those with DS have 47 chromosomes.

3. And, this is what makes them different than the average person.....God just wanted to give them a little bit more!

There you go! A little lesson on what makes Gavin the way that he is! Of course, Gavin is way more complex than this! But, I happen to like him just the way that he is!

"For You formed my inward parts; You covered me in my mother's womb. I will praise You, for I am fearfully and wonderfully made; marvelous are Your works, and that my soul knows very well." Psalm 139:13-14

Jesus answered, "Neither this man nor his parents sinned, but that the works of God should be revealed in him." John 9:3

"I will instruct you and teach you in the way you should go; I will guide you with My eye. Do not be like the horse or like the mule, which have no understanding, which must be harnessed with bit and bridle, else they will not come near you." Psalm 32:8-9


Lacey said...

Seriously, me and you are soul sisters! I so love the DS community. But I too am worried about sending someone to my blog. Jax nurse the other day said her friend was pregnant with a DS baby, and immediately I was giving her my blog address and telling her she can meet hundreds of DS families there. But then when I thought more about it, I was thinking that maybe she shouldn't look at my blog first, I don't want to scare the poor women to death. People will see Jaxson and run for the hills!
I do sometimes feel like Jax is more like a stroke child than a DS child, but I guess truth is they are both!
Oh and the crazy thing, the kind of DS that Jax has is rare, and he only has 46 chromosones!

Tara said...

I hate that you have to feel guilty for not having the Ds Poster Child! :) Silly momma! Gavin (and Jax) are good reminders to the rest of us that ALL people come in different packages with different gifts and abilities. I appreciate where you are coming from about the sibs. I feel like our kids had a lot of responsibility (most of it emotional) thrust on them, but I know that it is for their good, too.
Can't wait to share your "lesson" with my kids.
Oh, and, Caleb rocks!!! Good for him!

Alicia said...

First, you and Gavin could NEVER give Down Syndrome a bad name. Everybody is different and this is true with syndromes. Just because on person has DS does not mean their experience will be exactly the same as another person with DS. Just the way it is and so not your fault!

I am pretty surprised that a teacher would say something like that. I learned about things like DS in high school biology. I wonder where the teacher got her information?

I am proud of Caleb and your other boys for loving Gavin unconditionally like they do. They truly are the best brothers he could have!

Annette Gysen said...

As a former teacher, I would have been so glad to have someone with your experience come into my classroom and explain all of that! The kids could learn a lot about Down syndrome--and about a family that loves unconditionally. Some good lessons!

Amy said...

You are the best mom!! How sweet that Caleb wanted to explain the situation and that you work hard to give him the proper tools to do that. I actually think it's better that you let Caleb tell his own side of the story (although the teacher was REALLY off!), because now you can see how his mind works even better so you can teach him the right way to think about things in this circumstance. I just burst with pride at how accepting and loving my nephews are, especially with Gavin, and you are certainly to thank for that! LOVE YOU!

xoxo Auntie Amy

Elyse said...

First of all...the teacher may need a little DS education herself!

Secondly-you and Gavin are NOT a bad image to what DS really is. I see Gavin as a precious human being made by HIS hands and given to you by HIM. So what if he is different and has issues. Don't we all? Gavin's story has inspired me to do well to my future sped students and Gavin shows the light through his/your eyes.

He is also a pretty amazing kid!

Heather said...

This post,like many of yours,resonated loud and clear to me.In fact,I received a reply comment from someone the other day,after I had commented for the first time on her little guy and she said she had to confess that she had been to Zoey's blog but had to leave because I represented all her worst fears... I knew this was true but hearing well,reminded me why I don't comment to some new families.I scare them.Zoey scares them and that makes me sad.

Gavin is beautiful,as is your heart Alicia.I love coming here and seeing hope and honesty and faith.thank you for that and for sharing your very perfect Gavin.

Becky said...

This was a GREAT post - especially if you aren't familiar with DS. YOU are a lucky mom, raising such a choice spirit. I have always wanted to adopt a DS child, even before my Ben. Love you guys!

Unknown said...

I love the fact that your boys will not have ANY problem understanding this aspect of science ~ in fact, one day they will probably be able to explain the chromosomes better than the teacher! :)

Jenkins said...

That is great. You need to print that out and hand it to people.