Monday, August 10, 2009

Do I Have Down Syndrome?

A few months ago, my oldest son Diego asked me a question that made me think long and hard about how much siblings can be affected by having a family member with special needs.

He asked me out of the blue..."Do I have Down syndrome?"

Me: "No you don't have Down syndrome, why do you ask?"

Diego: "I want to have Down syndrome!"

Me: "Why?"

Diego: "Because....(said with a sad tone in his voice)....I want to be special too."

Me: "Diego, you ARE special! You don't have to have Down syndrome to be special. We love you just the way you are. We love all of you. You are ALL special to me and Papa."


Since that conversation, I've made an extra attempt to explain what DS is to Diego and to remind him that he is just as special as his brother Joaquin is and just as special as Mateo too. It's been an opportunity for me to be sure and check in with him. Now I understand how deeply this has touched him. It's true. Joaquin gets A LOT of special attention. Lots of different therapists come in and out of the house every week. Most are very welcoming to Diego but there is one therapist that prefers that the boys stay completely out of the room during Joaquin's session and that is really hard on the boys and on me. Joaquin is also a people magnet so he gets a lot of attention from family, friends, even strangers and this must be hard on the boys too.

Another interesting thing that has been happening lately, Diego will let his tongue rest on his lower lip almost as if he wants to look like Joaquin. He doesn't do it disrespectfully. It's a subtle thing he does when we aren't looking. It's like he is experimenting with it. I know that this is an attempt to get our attention as well.

The one thing that we have going for us is that Diego absolutely ADORES his brother Joaquin which is so beautiful to witness. I wish he felt the same way about his brother Mateo sometimes! But I can see that if I don't continue to watch the family dynamic that some resentment could grow and that's the last thing I want to have happen. I take extra care in making sure each of the boys gets lots of attention and special activities specific to them but it's hard sometimes because Joaquin is also the "baby" in the family so naturally he's going to get more attention just based on his birth order. Thankfully I'm a first born in my family so I know how Diego feels at times, but having a child with special needs in the family is very new to all of us. I would love to attend some workshops on this topic in the near future or chat with families who have been through this to make sure I do the best job I can in raising my boys to love one another and to each feel individually special. All of this without any resentment towards their youngest brother.

Just another reminder to tell our children, every day, with Down syndrome or not, that they are loved and they are SPECIAL.


Mel said...

Wow. My three year old went through a phase of thinking she had DS, and my 5 year old wanted to become a Dr to cure it. Since then we have changed the focus to just Luke, and not the DS so much, as we have accepted it more. He attends a centre for his therapy, so we don't have to worry about people traipsing through the house. I can see the therapist's point, but I understand that part of the reason for therapy at home is for them to see the child in his own environment and to treat them more holistically. That means including his brothers- they are a huge asset in his development :)

Marcy said...

There was a workshop on siblings at the conference. I can't find it in the packet right now, but I wonder if the notes from it might give you a start. Courtney herself is just starting to have a questioning look when the topic of DS comes up. Because she is my oldest, we never talked about it specifically saying "you have DS". Now I'm wondering how to tackle the topic. If you find a workshop on the siblings involvement, please let all of us know.

Sonia said...

What a great reminder.

Katie is 8 and she seems to understand about the therapies for Lillian and knows more about Down syndrome then what I give her credit for. But, I still try to give her that extra little bit just to make her feel special.

However, Charlie, who is 4 just doesn't understand it. He's also my emotional one and gets very jealous of the attention. He's the one that truly demands the one on one time with me...and that's OK, I'll give it to him.

I guess that extra step to make sure all our kids feel special shouldn't be too hard, I just need reminders like this to keep me on track.

sasha said...

Hi Jennifer

I can totally relate to your post. Ah Diego is a handsome little boy by the way. I have been going through the same adjustements with Blyss. About 2 months ago I signed her up for all of these programs because she is feeling jealous and left out. It is a hard balance I must admit. Yesterday I had a therapist in and Blyss was all over Wysdom. I had to ask Blyss to move away and I know she was upset.

I know I read about a workbook for siblings of children with special needs. I am going to try to find it and send you the link.

Take care

sara p said...

that is a wonderful post, lately i have been thinking i spend so much time working with max, and lilly seems to be pushed to the side, being a new mom to a child with DS has changed things... for her and for me, first its a big change not to be the only child, then to top pt appts, and dr.s appt on top of that, i need to work harder at giving lilly the attention she needs and deserves, thanks for the great post.

Ria said...

Isn't it amazing how kids teach us the important lessons in life? I only have one child now but I can imagine it's a hard balancing act to be able to shower each kid with love equally (equally in their eyes). If Matthew has a sibling in the future, I will be faced with the same tight-rope to walk and I hope I do it as well as you.

Sharon said...

Oh Jennifer - moments like this can be touching and difficult at the same time. I remember reading somewhere that it's important to tell your other kids that although your child with special needs may get more of your time and attention - he doesn't get more of your love.

Emily said...

I totally understand. We were at Costco a few weeks ago... and Justin got soooo much attention. He usually does. Then, my oldest daughter(10) told me she wishes she had Down syndrome. I asked her why. She said, "everyone gives him so much attention and tells him how cute he is. Doesn't anyone think I'm cute?" WOW... she is gorgeous. I told her that she is just as special as he is. Not only is it because he has Down syndrome, but he's a little tyke. I told her she got just as many comments when she was his age and continues to. I give her a compliment now as much as I can. I don't ever want my kids to feel that they aren't as special as their brother.

Cheri said...

Oh man...that got my heart! This is an interesting topic. I am sure Luke has some feelings about all the attention Reid gets from therapists, doctors, and hospital visits that he is not able to articulate. I am glad Diego was able to ask you this question to tip you off of the little thoughts he is processing through. All 3 of your boys are beautiful...with such GREAT NAMES :) are very blessed! Thanks for sharing this Jennifer!

Megan said...

Hi -

I'm a friend of Cori and Joey's. And Tony's of course. :)

I'd love to email with you about this if you have time to contact me - I'm developing a blog right now about siblings with special needs and was thinking maybe Diego would like to contribute? Details if we get to chat over email; I don't want to bombard your comments section. :) My brother has cerebral palsy and we're both adults now. I'd love to connect with you on this if you have time! meganfera at gmail dot com Your blog is fantastic and I look forward to meeting you sometime with Cori!!

Megan Fera

Tausha said...

Oh, such a great post. It's even harder for me as the other two kids in our house are my Step-Daughter and Step-Son who we raise full time. Their Mother left and didn't want the responsibility of raising them full time so you can only imagine the dynamics we have here. Ashlee asked one you love Sam more then us since he is your biological son? Wow, how do you answer that one? I reassured her that I loved her just as much but in a different way. I have only known her for 2 years and the bond will get stronger and the love will grow even more. I told her I wished I could of "borned" her and that I wish she would of been my little girl from the beginning and I think she really liked that I felt that way. I try hard to make sure I include both she and Cody in everything and let them know they are just as special as Sam. I try and do things seperately with them and get a babysitter for Sam so we can have one on one times as well.

Jennifer said...

Diego is a great kiddo. What a blessing for both Mateo and Joaquin to have such a strong older brother.

If you ever need a place to drop the little guys for a special outing with Diego, our door is always open. (I know two kids who'd be thrilled to have their pals over!)

Monica Crumley said...

Wow, great post. I often wonder how my other kids feel. I try to remember to ask them, but I also acknowledge to them that JM does get a lot of attention. I make sure to spend as much one on one time with them away from the home, or at least time w/o JM. They also adore him. I think Diego is wise to be able to verbalize his feelings. You and Hector are doing a great job.

stephanie said...

Jennifer, I am moved to tears at what you are doing. I just read about it on Monica's blog. My pregnancy could have been so much more pleasant if I had seen a book like Gifts. God bless your endeavors.

BTW, my youngest daughter who is 7 tells me she wishes she had Ds also. When I ask why, she says "because Emilia (my daughter w/DS) is so cute".

Anonymous said...

Jennifer- thanks for coming over and saying howdy! this post really touched me too- I grew up with one older sister with MR and one other sister who is older then her- I see how it's affected my older sister- whether she is aware of it or not and it breaks my heart sometimes. Of course that's my interpretation and any story has a gazillion versions right? hmmm-good food for thought :)