Monday, December 27, 2010

Moments of Sadness

I never really went through the grieving process I was apparently supposed to have when I had a baby with Down syndrome. I did experience about 5 minutes of raw fear after getting the diagnosis before they placed him in my arms. Once I held him, I knew it was going to be okay. A friend of mine had been updating family and friends during labor. I called her about 20 minutes after delivery to tell her he was here. I said, "He's here! Simeon Israel. He's the cutest baby with Down syndrome we've ever seen." She responded that she was sorry and I said not to be...that he was perfect. I meant every word. I also joked that we needed to get one of those bumper stickers that says, "My child has more chromosomes than yours". Acceptance came easily for me.

I don't know if previously considering adopting a child with Down syndrome or knowing I had a high risk helped prepare me, but I never got depressed over it. I have had moments of sadness periodically, though. Very few and far between them almost two years into it, but sometimes they come out of nowhere.

I had one the other day. I was shopping at Aldi and I heard the familiar sound of an insistent "Uhhhh!" I recognized it because Eon hollers it frequently when he's excited or wants attention. I don't notice it much at home because all the kids are loud around here. But in the middle of a crowded store, it was noticeable. As I was bagging, I saw her. She was standing in line with her mother pretending to talk on a cell phone. What she was saying was completely unintelligible, but she was obviously enjoying herself. She looked to be about 7 or 8 and had on the cutest sparkly tennis shoes.

I never know how to approach people, especially if Eon's not with me, but I decided to go for it. I walked up and said, "I think we have something in common. My youngest son has Down syndrome." The mom brightened and asked me how old Eon is and we chatted for a minute. Then I asked how old her daughter is. I was completely unprepared for her response. "Sixteen," she replied. My heart dropped into my stomach and I hope she didn't catch the dismay I'm sure I wore on my face. I mumbled something to the girl about being a "tiny little thing" and that I liked her shoes. She didn't appear to understand me.

We chatted some more and she mentioned something about "the other little girl I watch that's a month younger than her"...

Another 16 year-old that needs a babysitter?!

You're probably thinking, "Duh. Of course a teen with Ds might need someone to watch them." I know that cognition varies with individuals and people with Ds function at different levels, but I guess I hadn't gotten that far. I was unprepared to see a young woman with Eon's condition still engaging in behavior that Eon currently enjoys (loudly vocalizing and pretending to "talk" on the phone). It threw me.

And, the encounter has stayed with me. I'm still trying to process it and my response to it. I just assumed Eon would progress beyond the toddler he currently is. He is so typical in many ways, I sometimes forget that he's behind in other ways. My expectations for him are high. Now, I wonder if they're too high.

As I was writing this post, Eon walked over to Keturah's crib, signed "baby" and then, "sleeping". I asked him if he wanted to sit in my lap and he climbed up. He's doing great and I am so proud of him! I just need to remember to take it one day at a time.


  1. I had a similar experience right after Lily was was a 20 year old friend of ours with Ds. We've know her for years, and always thought she was funny and cute and sweet, and I never "grieved" wehn we saw her. She and her mom came to pay us a visit when Lils was a week old, and I cried so hard when they left. Kari had been crawling on the floor with my little kids, hiding behind a wall and playing peek-a-boo with us...and all I could envision was Lily doing the same at 20. I talked to Lily's EI therapist about it and she said there is such a broad range of functionality and maturity in Ds that I just can't predict how Lily will be. She also encouraged me that we can set the standard for what is acceptable behavior for Lily- crawling on the floor and acting like a 2 year old at 20 was somethng we could help Lily understand was not okay. You know what I mean?
    My best friend's daughter is 30 and she has CP. Denise has taught her age appropriate behavior from a young age, and she is a very mature 30 year old as a result. So I guess I'm saying all that to say- I wonder how much of behavior is learned/taught. My new mantra is "expect don't accept."
    P.S. Glad you liked the iPod:)

  2. I spent most of the free time of my teenage years babysitting. I lived on a military base and was always booked well in advance and was known by word of mouth. It was well known I looked very young for my age, but no one ever asked what age that was and I was advanced in school. I mention this because a number of times I was asked to 'babysit' kids my age or older. Sometimes it was because the other teen was not up to being by themselves, but a lot of times it was because the parents were not ready to let their child be left by themselves yet.

    In regards to enjoying the same behaviors, I think it isn't necessarily indicative of cognition. One of the reasons I was a great babysitter was because I still enjoyed coloring books and pretend play as much as the little (and not so little) ones I watched.

    I also think that in every generation, people tend to tie intelligence to ability to communicate and unfortunately for a lot of our kids, if they have difficulty communicating, they are not encouraged to progress in any other areas, even if they are more than capable, so the teenager you met, might have not been given the opportunities to develop in other areas due to her difficulties with communication.

    I think with all our children (blessed with an extra chromosome or not) we have to believe our kids have the ability to do anything and help them work toward it, but to be reasonable about what they are capable of and modify our expectation when and only if it is necessary.

  3. We could have been shopping at the same Aldi. LOL
    I wasn't upset after Alayna was born either but, I had a similar experience where I met an older couple (at Aldi...they approached Alayna & I) and they introduced me to their 25 year old son.
    In talking to them I learned that he never learned to read. I didn't realize how much this stayed with me until a few weeks later when I had tears over Alayna and it was out of fear that she wouldn't learn to read.
    After I processed it and realized that we have come so far in education and expectations in the past 20 years and that every person is different, I knew that I had to have high expectations for Alayna just as we do for Aidan, if we didn't we surely would be limiting her ability to soar.

  4. wow! this would have been hard...this is what I fear the most...thank you for sharing and I am still processing it...I think that with all we know now and early intervention with ot, pt, and speech...we are only helping our kiddos become more independent...I would not have walked away from this situation feeling ok about Maddie..I would have walked away afraid and sad...I do believe our kiddos are going to be independent sooner because of inclusion in the classroom...something that was not there even 10 years ago..hope you had a GREAT holiday..smiles

  5. Wow...I haven't had an experience like that yet, I can see how that would have been discouraging. I feel the same way about Emily, she is so typical in so many ways that I almost forget that there is a possibility that she might act like the 16 year old you saw at Aldi. I am making myself take things one day at a time and also trying to remember there are a lot of things that I can do to give her the best chance to reach her full potential. Hoping you are getting some sleep with the new baby and all :-)

  6. I dont really know what to say, other than I appreciated you posting this. I have had moments like this when seeing some adults with Ds. The truth is we all just want our kids to be able to do all the things others do, and the thought of them not being able to does panic us or make us sad.
    Thank you for posting this because it always helps to know Moms who have kids older than mine still have the same moments I tend to have from time to time. And you are right, we can only take it one day at a time :)

  7. I notice a lot of comments because it hits us all. Remember this: my sister-in-laws husband has a 21 year old cousin who has Ds. He sits around and drinks beer with them and stays home by himself when his parents go to the cabin. So, there is a variation and even if our little ones are a certain way that would shock us now, I bet we'll be in a different place as it is happening.