Sunday, July 19, 2009

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.


Beverly said...

oh man, I am sorry you had a hard day. I know how you feel. I have not left Noah with anyone much at all, I could count on one hand. I loved how your post ended, so sweet. What a wonderful big brother loving his sister!

Ruby's Mom said...

I wish we lived closer together.I would love to keep Sean for you so you could go out.I have plenty of people for him to play with and keep him busy :)

Raisingarrows said...

My heart goes out to you. It seems you can't be a parent without facing challenges and yours are a unique challenge few understand fully (myself included). But, I do know the feeling of a day not going as expected and a child showing a side of themselves that others do not understand.

I am so glad you write. It really is cathartic.

Sarah said...

Deborah- reading this took me back to the days when I would leave most public places in tears because Ethan was such a handful- and even though he does not have DS I can totally sympathize with you. It's so tough! I seriously drove home from the dance studio, the grocery store, any where I had to take Ethan, just crying... and I hate to admit, sometimes yelling. It was awful. But he did eventually grow out of it. Sean's path may be differnt and he may take longer to get there, but he will!! You're doing a wonderful job.

SunflowerMom said...

Thank you, everyone, for commenting so quickly! I had been wanting to write this out for several days, but it is so hard to find time to organize thoughts and write. You made me so happy I stayed up till midnight getting it out! hugs back to you!

Mommy to those Special Ks said...

This was beautifully written!!! You expressed it so well!

Wendy P said...

Deborah - I'm sorry y'all had a tough day, but glad it ended on such a positive note. Beautifully written post, thank you for writing it!

Kim said...

Gosh, I could have written that myself. With Charlie now 3 1/2 and Calvin 16 months, there are many times that I feel like I am caring for twins. True, Charlie has more self control than Calvin. He goes to bed easier. I'm not nursing him anymore, and he is slightly less messy at meals. He is less clingy. But there are the other things. The running off. The stubborn flop-n-drop. The tantrums if we dare offer him a food he is unsure of, even if he felt okay about it just the day before. Potty training is coming soon for us, and we will be doing both boys at once. Not because we are gluttons for punishment. No, it's just that BOTH of them are nearing a stage of readiness.

You probably feel this a little already having three, but I want more children. I would really like to have 4 kids. Always have. But on those days that I am visiting guests or my family is visiting from out of town, and I am running around like a chicken with no head trying to coral the kids, get Charlie to follow directions, go shopping... I feel like a total failure. How could I ever express a desire for more kids? My family will tell me I am nuts. Look, I can hardly care for these two boys I have.

Of course, there are the other times, as you said. The times where friends and family must be jealous that I have such a tender, funny, caring, generous little being as a son.

Kim said...

i loved reading your post, mostly because i had to laugh, for at times it also sounds like our story. and i guess that is what we all have in common. (i especially enjoyed the potty stuff, and the running, escaping from the house - ie: my son almost immediately figured out how to open my parents garage - which leads me to understanding that if there is an exciting movtivation, my son will learn anything in one day.)

and on the other hand teeth brushing time has made us feel like the most unsuccessful parents, and can bring a wonderful day to a horrible end, ugh.

anyhow, thank you so much for taking the time to post such an honest blog post, i appreciated it, and it reminds us all that we are not alone in this interesting web of down syndrome!

:) kim

ps - i think i found you thru the ravelry group, i'm bigskymountain

Hector and Jennifer Varanini Sanchez said...

I'm sorry about this phase Sean is in. I too have heard that stubbornness is a trait in DS and I think it's true as well....mostly true because our little guys are SMART and they know how to work us :)!!! My nephew who is 19 now is still VERY stubborn and his mom says that it's still challenging but the stubborn periods get shorter and shorter but they are always there...not sure if that is at all reassuring but at least we are not alone on this journey. Another piece of advice we got somewhere was to have a very firm discipline plan with Joaquin as firm if not more than what we have for our two older boys. Hang in there!!!

Brandie said...

more (((hugs))) I've been feeling the same way lately. Goldie is only 2 but, it dawned on me the other day that the grandparents never call and ask to come get her. When my older two were her age they started spending a few hours or maybe a day with their grandparents. I can't be angry at them because I don't think they are all capable of keeping her safe. My mom must have read my mind because she asked to take Goldie tomorrow morning! I never have time with just the older girls.

I talked to another mom whose son is just a little older than Sean and she expressed the same thing. She doesn't trust anyone to watch him because they don't realize they have to WATCH him.

Goldie's OT told me the same thing about stubborness. My thoughts: I'm sure they are and you would be too, if you had try 10 times harder to do everything from walking to talking. When your body doesn't work with you, then you have to develop the determination to keep trying. (not that this makes being the parent any easier.)

Jennifer said...

Boy do I ever relate to your post!! I find myself taking Aidan in a stroller still because then I don't have to worry about the flop and drop or about him running away.

We started using respite care when Aidna had his cast on, and I have never looked back! She is the first person I have ever felt fully comfortable leaving Aidan with. I watched her in our home for days before I let her take Aidan anywhere or before I left the house, but it is quite a relief to finally have someone!! I hope you can find someone, too. Prior to that I always had the same feeling, that Aidan was no harder than any other kid and I didn't need respite. I really benefit from the break now, though.

I'm sorry you had such a rough day, but I'm sure your friend knows how wonderful Sean is. ALL kids can act razy when you're out shopping. Both of my older boys have had their moments. The hard part is when people are quick to judge just because your child has Down syndrome.

Monica Crumley said...

Sounds like a rough day. I've heard that stubbornness thing about kids w/ Ds. My little guy is only 20 months old but I totally see it already. We've used respite for about 3 months now. I felt so guilty and had the same feelings as you, like why should we use it when he's pretty much like any other kid. But now that we have used it on many occasions, I realize I don't have to worry about these two women that we've chosen to help us. They chose this job knowing full well that a child could end up screaming for a couple hours, but it allows the parents a break away. I always ask how John Michael was and she'll tell me he cried, but then she took him for a walk in the stroller and he stopped. They're focused on your child w/ special needs, while also caring for your other children if necessary, and they don't judge. Maybe you're still eligible.

Karen said...

It is way too early in the morning for the tears that you brought. I love the love. I love that Sean is such a great big brother.

And I hear you loud and clear on the flop-and-drop, the stubborn and the lack of a sitter thing. I'm not a fussy mom by any stretch (I'll let the kids with anyone who will take them!) but Micah tends to go with us wherever we go. There's no question. My MIL watches him, and that's the end of the list.