I've Been Fighting Against Down Syndrome

Lately, we've been in a rough patch. It's probably because it's summer and we are spending all of our time together and I'm not keeping the kids busy enough. Or maybe it's a growth/developmental spurt. For whatever reason, tension has been high within our family.

Usually I don't think too much about how Sean has Down syndrome and how it affects him and the people around him. Until lately. I am reminded of something his physical therapist told me when he was just a few months old, "You will find that kids with Down syndrome are very stubborn. Once they get something in their heads, they have a hard time letting it go and adapting." At the time, I thought, "Great, another generalization. Whatever." As time has gone by, I see a lot of truth to that declaration.

When he was less than one, we were told we qualified for respite care. Again, I thought, "Pfft! He's not any harder to care for than any other baby. We don't need special breaks from him just because he has Down syndrome. Other families need this funding more than us." We never looked into using the program and I am not even sure if we still qualify. Now that he is older, I see why respite care can be helpful.

You see, while I love Sean to pieces, it's true that he does need special care givers to look after him. He needs someone that knows him- his likes- how he communicates- how to work with his stubbornness. Doug and I have been the ones that meet his needs exclusively for so long. There are only a couple of people that we feel we can fully trust to care for him and unfortunately they are not easily available to us. On the surface, it may seem like "any" babysitter will do. I suppose for a short period of time, say 2 hrs, that might be true.

However, we'd be worried the whole time: do you think they were able to get him to eat? I hope they understood when he asked for milk. Please don't have a poopy diaper while we are gone! I hope they keep the doors locked. Did they remind him to go potty?

We're not perfect. We've had incidents with him where he's escaped from our house and tried to walk off. We've certainly had to clean up lots of potty accidents. We've had to battle him over food. But these are OUR battles and OUR responsibilities, we don't feel comfortable leaving them to someone else.

So we don't. We don't try to find someone to babysit regularly. We don't send him to sleepover with his grandparents just for fun. He has slept away from us twice: when Ella was born, for one night, and one other night when he was around 2 yrs old, so I could go to one of Doug's concerts. For what it's worth, Aidan has only slept away from us about 5 times, due the birth of siblings or other hospital stays. It's just hard to find someone who'd want to take on the challenge of energetic little boys, one of whom isn't completely verbal and likes to run.

That said, I know all this about my kids and our family. I know that they are my responsibility. But this summer, the weight of the responsibility has been very tiring. Probably because we now have Ella and I have to focus my attention on her needs. She's just busy doing what babies do: exploring, eating, needing to sleep, playing. She is reminding us that we need to put cabinet locks on doors, that we have to keep trash cans up high, and cat food out of reach. Sean still does much of the same exploring behaviors that Ella is beginning to do. It feels like we are about to have 2 toddlers at home, instead of 2 big boys and a baby. Developmentally, Sean is very much like a young 3 year old and that's hard. It's hard because it has felt like he's been at that stage for so long.

When you hit that age with a typical child, it sucks, you can laugh about it, you watch them rapidly progress to new things and new skills, then before you know it that stage is over. And your grateful. Your grateful that your child is now able to listen to you when you say stop, come here, stay, hold mommy's hand, first we will do this, then we will do that.

With Sean, that transition is just so slow. We are not there. We haven't made it to the other side. Today I was actually amazed that he followed a 2-part direction that required him to go to 3 rooms. I sent him to throw a wet pull up away, get a new pull up, and bring it to me. I was so proud of him for not getting distracted on the way and getting the task done quickly. And he is almost 5. FIVE! A typical five year old would do a 2-part task without a thought.

Last week, I made plans to meet up with a college friend that was visiting nearby for her high school reunion. I had hoped to find someone to babysit Sean and Aidan so that I could just take Ella and have an easy visit with my friend. Unfortunately (see above) I couldn't find anyone to watch Sean. I sent Aidan to the office with Doug, which has been a big crutch this summer, but I can't send Sean there because Sean can't entertain himself safely there. Thus Doug can't keep working if Sean is there. So I took Sean along. Sean and Ella are good travelers, so the hour drive went well. We met at my friend's mom's house and he behaved well there, even went potty for me.

Then we went to eat lunch. Sean was fine until we got to the door of the restaurant. He pulled a flop-and-drop as soon as he saw the crowd of people inside. This is a typical Sean response to new situations. Mind you, I have Ella on my hip and a diaper bag. Oh, and my friend and her mom are trying to get in the place too, pushing a stroller with my friend's daughter in it. I moved out of the way to let them in, then I had to carry Sean in on the other hip. I tried to get him settled down so I could order my lunch (deli style place) and he wouldn't have anything to do with it. I had to take him to a table and get him distracted eating so he would calm down. I got Ella in a high chair and gave her some crackers so I could focus on Sean. Eventually I got to order some food and eat in between trying to feed the two kids and keep them at the table. Towards the end I failed at that and Sean wandered off to the bathrooms, so I had to leave Ella with my friend while I took Sean to potty and tried to talk him back into sitting with us.

From there, we decided to stop in at Gymboree to do some shopping. I was looking for birthday gifts for Ella. Sean was good at first, but I took too long making up my mind, then had to wait in line. I suddenly realized I couldn't see or hear him, so I dropped my stuff and left Ella with my friend while I ran around looking for him. I found him in the store next door (he'd opened the heavy doors to both places to let himself out.) I brought him back inside and got in line again. He took off on me again, so I had to run out after him. Tried to get him to sit in little chairs so I could check out and he ran out a 3rd time. Finally I gave my friend some cash and asked her to pay for me while I waited outside with Sean and Ella.

For some nutty reason, I actually thought I could try to shop in one more store with the kids and we went into Baby Gap. Too bad that Sean saw the huge water fountain in the courtyard by Baby Gap on the way in. I had to drag him in the store and back to the baby section. I tired to make quick decisions and found a few things, again we met problems at the check out. This time he tried to get out while someone was pushing a stroller in, and she held the door open for him. Nice. I had to throw my stuff down and run outside after him again. This time, I asked my friend to take him to see the fountain while I paid. Finally we got things settled and were able to get out of there.

We went back to her mom's house so I could nurse the baby and change her diaper before the drive home. Sean spent that time getting into their baby's exersaucer, wandering around with a cup of milk after being told to sit at the table to drink it, and fighting me about going potty.

When I left I felt defeated. I had wanted to relax and visit with my friend and instead felt like I had spent the afternoon showing her that my child is unmanageable and that I am an inept parent. I didn't want the impression Sean made to be "mischievous little boy." I was very sad and disappointed. I'd fought against Down syndrome and Down syndrome won.

Ella was tired and ready for a nap, so she began fussing in the van as soon as we left. I tried passing back things to occupy her (toys, cell phone, whatever I could grab.) She wasn't interested. Sean started talking to her, telling her "Ella! sssh!" in a giggly voice. She quickly started giggling at him. Every time he said "ssh!" she'd let out belly laughs.

My heart melted and the disappointment faded. This is what I wanted my friends to see about Sean. This. A big brother caring for his baby sister. A baby sister delighting in her big brother. Down syndrome may make it hard for Sean to follow directions, hard for him to handle crowds or new places, or hard for him to communicate to everyone he meets. But it doesn't make him unpleasant to be around. It doesn't make him inconsiderate. It may be tough at times, but it is so worth it for moments like this.

Within a few minutes, I noticed Ella had quieted down so I looked back at them again. Sean had given her his glasses to play with and she had them clenched in one sweet little hand and had fallen fast asleep. Sean settled in his chair and watched Wall-E the rest of the drive home. Fuzzy, but content.

I'm hoping I will remember this stage the same way: fuzzy, but content.