Saturday, February 6, 2010

Hunter and Down syndrome

I've been asked by a couple of different people here lately if Hunter knows that Ella has Down syndrome.

The simple answer is yes, Hunter knows that Ella has Down syndrome. Does he know all about chromosomes etc, no.

Hunter was 2 years and 4 months old when Ella was born. Ella was born 6 weeks early, I had a C-section, and we came home 2 1/2 days later. When we came home from the hospital I was a mess (to put it mildly,) and Hunter was very angry at me. I think he was punishing me for abandoning him, we had never been apart and this all happened quickly, no time to prepare, then I come home crazy and crying. Anyhow, Hunter remained angry at me, lashing out at me for several weeks, but he was always nothing but sweet to Ella.
I guess Down syndrome was just always apart of our vocabulary, especially in the early days. Hunter attended most of Ella's appointments with us, so he heard about it often. Those first weeks are a complete blur to me, but we must have told Hunter the same thing we tell him now, that Ella was born with Down syndrome, which means that she will be able to do the same things as him she just needs extra help learning how to do them. Before Ella was 7 weeks old (I know this much because my mom was still at our house and she stayed till then,) Hunter was riding his little police motorcycle around the house. Our little game was for me to ask him where he was going. His answers always varied, from Walmart to work. Then of course I would say where do you work, he was mostly a policeman (go figure), a garbage truck, yes I said truck. So this particular time I asked him where he was going, he said he was going to work. I said "where do you work," and my 2 1/2 year old replies " I'm going to help people with Down syndrome." A bit shocked I said "Where?" surely I hadn't heard him clearly, he sighs a big sigh clearly disgusted with me not hearing him and says loudly "I SAID I'M GOING TO HELP PEOPLE WITH DOWN SYNDROME!!!!" Then he drives away, I of course am left in tears.
In Texas our services were in home and of course Hunter made himself a big part of that, it helped that Mrs Deena loved Hunter too !! After they would leave Hunter would make his baby doll do tummy time and other exercises they had been doing with Ella, it was too cute. Once we moved here to Spokane and Ella started the Guild School, Hunter also came along. We met friends that have a son Ella's age with Down syndrome and a boy a bit older than Hunter and the whole family became instant friends. For awhile I wondered if Hunter really understood that Ella was different than other kids, I wondered if he thought everybody had a little sister or brother with Down syndrome. After all his best friend had a little brother with Down syndrome, his little girlfriend at preschool had a brother with Down syndrome and we went to playgroups and such where of course there were kids with Down syndrome. So Down syndrome was a huge part of his life.While the kids and I were in Georgia this past summer I got my tattoo with the Ds awareness ribbon on it. I was talking to my dad and Debbie about something and must have mentioned Down syndrome. Hunter stopped playing cars and said "why do you always say that word?" What word, I asked. "Down syndrome." Well that took me by surprise because I had always said THAT word and thought he had a fair understanding of what it meant. So I said to him "well Hunter, you remember sissy had Down syndrome..." and he interrupts me and says "NOT anymore! She's 3 now and doesn't go to the Guild School anymore and that means she doesn't have Down syndrome now." Of course I teared up (notice a theme here) and had to explain to him that all kids leave the Guild School when they turn 3 but that that doesn't mean she doesn't have Down syndrome anymore, that she still needed help but would go to a new school. If only she stopped needing help at age 3, wow that would be something : )
Since we had our little talk Hunter has been quick to point out people with Down syndrome out in public. He will say "hey, we know that man with Down syndrome. We met him at Jenny's." (Jenny's is a restaurant where every other month there is a breakfast for families.) Usually it's not someone we know but I still think it's neat that he recognizes.

Hunter has always been so very patient with Ella, very caring, and very protective. He likes to tell us when Ella is doing something often saying "she could get hurt." I really have conflicting feelings over it all. On the one hand I of course know that Hunter's life will be better for having a sister with a disability, that he has learned compassion and that people are born all different ways. I like to think that he will be the one that will stand up for a kid being picked on, that he will befriend a kid who is struggling. On the other hand I worry that Hunter worries too much. He is only 5 and has designated himself Ella's guardian. I blame myself because he is so much like me, he has a lot of anxieties, some of which have affected his schooling. His teacher at our last conference said that Hunter often has trouble focusing on his work because he is so worried about the other children. If someone gets hurt or needs help he is always the first one there, which has it's good qualities but he also just needs to be 5. Five year old's should not think that way.

I believe things are getting better though. I have had several little conversations with Hunter about it being my job to worry about Ella, that I am the mommy and that his job is to be a 5 year old kid. Also I got a phone call from his school counselor, (he's in Kindergarten and goes to a Kindergarten center, kids from several elementary schools) which is scared me. Luckily she just said that she wanted to start a group for kids that have siblings with special needs. Hunter's teacher had told her about Ella, and she wanted my permission to include Hunter in this group. Apparently some parents had declined. I was so happy and of course said yes! There are only about 4 kids in the group, they have siblings with all different disabilities. They have discussed things such as what is good or bad about having their siblings, how sometimes mommies may be sad or worried, etc. I think it is so good for him just to hear other kids going through the same things as him. Of course all of their conversations are while they are playing games etc, and Hunter LOVES the days that Mrs Marsh comes and pulls him out of class. It makes him feel special, which he so needs!!!

So there ya have it. Hunter knows Ella has Ds, he doesn't know the science behind it, but he knows that she is different. As he gets older I anticipate more questions but for now I think that he really has a good grasp on it, especially for a 5 year old! I am just so proud of my boy, he has endured more in the past 3 1/2 years than most 5 year old boys, and has come out a very compassionate, sensitive, caring, smart, social, funny little boy. I just love him to pieces, he is an amazing brother and role model for Ella!

14 comments:

Aunt Tami said...

What an extraordinary nephew I have....well I already knew that!!! Cant wait to see you all soon!!! Love ya's!!!

Alice said...

You have great kids!

keith said...

Kacey,

God has given you so much grace. What a beautiful way to answer such questions put to you (we get similar: "Is the dad Chinese?" when folks see Tracy out with the girls). What a wonderful way to honor your son, too! May God continue to reveal himself to you on this most miraculous journey.

kecia said...

thanks for sharing! We talk about ds around our other girls and they have both been involved in all the therapies and things but we have never really explained what it means, yet. We have just said that the therapists come to help Bree learn things. What I love about kids is that they don't know or care about the differences in people...like we all should be.

My name is Sarah said...

This is Joyce. Kacey that was awesome. Such a tremendous look into the natural progression of a young brother thrust into the world of Ds. I just know he is going to continue to thoroughly amaze you.

Runningmama said...

Thank you so much for this post...My oldest Ethan is 3 years old and Emily who has DS is 8 months old so they are about the same as yours are apart and sometimes I have worried about how their relationship will be. It's so encouraging to get a little glimpse of the future!

Ciara said...

What a lovely post Kacey, you must be so proud of your little boy too. It's great to hear, our new arrival is still very small and will be younger than his sister Ava but I hope in time will grow to be somewhere near Hunter in personality.

Colleen said...

Ella is super blessed to have such a caring and awesome big brother! They are SO sweet together in the photos.

Tsquared417 said...

God love the big brothers for our girls!!! What a wonderful post and what a wonderful son you have!

Kelli said...

Wow, what a beautiful post! Hunter is such an amazing big brother and so caring for his little sister. I just love the last picture of the 2 kids. How adorable...

Tina said...

This was a beautiful post, so sensitive and insightful. I always worry about my son, about how he is going to cope with having a sister with DS in the long run, I think perhaps I worry unnecessarily. Making DS a open talked about subject in the home is the best way, it was hard to start for me because my son never really realised anything was different about Saira, except for why she has to go for therapy all the time, this gave me the opportunity to touch the subject. As time goes on I hope we can talk about it in more detail, but like you I am not sure if he still understand that his sister is actually a little different and will always be in certain ways.
Those are such beautiful pictures you have put up of the two of them!

Amy said...

That was an awesome story! My little girl with DS is 3 and her big brother is 6. Your son reminds me of my son too and I was laughing when you said that he thought that your daughter didn't have DS anymore. My son said that when my daughter, Abby, finally started walking at age 3. He said--she's walking so she doesn't have DS anymore!! He also got down very close to her with his face right in front of hers and said "don't worry, Abby, I had down syndrome once when I was little" I started to say "no, Tommy..." and he quickly shushed me and said in whisper "MOM, shhhh, I am just trying to make her feel better!" Precious...I cry thinking of it. Thanks for sharing your beautiful story!

Sandra said...

Your little daughter is soo cute! My baby girl is 10 months now and my boy will turn 3 next month! I worry so much about them: Will my boy always be there for his sister later in life? Do I expect too much from him? Should we maybe have another child? I think about the future daily. We live in East Texas and I was already excited to see you are from this neck of the woods....but you moved:(
I just wanted to tell you thanks for your story, I thought I am getting crazy thinking so much about the future - thanks for your site!
Have a great weekend!

Kristie Vachon said...

I just came across your site and I wanted to tell you that your Ella looks so much like my Ella. Shes my angel.