DownBlogger: January 2012

I have been asked recently about this blog, and my lack of posts the last few years. Yes, life took over and I got sidetracked. I was surprised, actually, at how many people have asked me to get back at it. The focus of this blog has always been Down syndrome, and frankly, I kinda sorta thought that "older kids" with DS just werent that interesting to new parents. Silly me! I remember when Ciarra was small, that is all i wanted to see. It was a window into the world of my future. What was possible? What was scary? Could reading about it make it less scary? It could, it did, and it can.

So, here I am. I promise to try to be a better blogger. And thank you for the many emails, comments, and FB posts that encouraged me to get started again. I am honored to have discovered that Ciarra's story has been encouragement for many people. That makes it worth the time.

I will admit, part of my return to blogging is also this: "you never hear from the olderrrrr kids parents, because their lives are just awful, they are burdened, they arent little and cute anymore and they just stagnate."

Eh, bite me.

It is quite the OPPOSITE, actually. Ciarra's life doesn't revolve around Down syndrome. It lost its big BANG for us, and we just went about living our lives. Sorry to disappoint the haters, but..well, life is going JUST fine...if you count a boy-crazy teen with hormones, a penchant for VERY loud music, video games, junk food, and the quest for a bigger and better social life as "fine".

So, lets update where we are at 13, shall we?

Ciarra is BOY CRAZY. Like, seriously, totally, completely boy c.r.a.z.y. Theres this one little boy she is sure she is going to marry. He, on the other hand, is NOT so sure. But he is: polite, sweet, respectful, and kind. He doesnt mock her or take advantage of her by making her carry his books or do his homework, or anything he might have considered.

Chances are, Ciarra will NOT marry Devin. Chances are also pretty good *I* wouldnt marry MY first crush in school. It is not a tragedy. Its just life. She may get her little heart broken, and yes, it is a little harder to explain the fact that Devin just isnt likely to return her crush. I live in the real world. Devin does not have Down syndrome. Ciarra DOES. While he is a helluva nice kid, he is not terribly likely to fall madly wildly passionately in love with a girl with DS. But he can be her friend, and he is. And he treats her with dignity. Thats enough. For me, anyways. We are working on it with her. And yes, there is ALWAYS the possibility that some typically-chromosomed young man will love her back. (Have you ever seen the movie Mr. Blue Sky? wouldn't that be awesome, amazing, stunning, and totally cool? Living in real life doesnt necessarily mean we dont still have dreams. They're just different dreams.) But reality is, that isnt likely. Is that sad? Maybe a little.

Wouldnt it be nice if life could just be we get to choose the boy we love, and he would love us back, and we would always be exactly, totally everything he ever wanted? Yep. But life isnt like that. and we all...ALL OF US...DS or not...go through the ups and downs of love and heartache. Ciarra is no different. And so we see this as not a tragedy of her not being able to attain her one true love. We see it as a life lesson all of our children will have to learn. Love sucks sometimes. And someday, if you are lucky, you do find JUST that guy, the one you can share a life with and be happy. The one who loves YOU, 47 chromosomes and all. I see that in Ciarra's future.

Just not with Devin. ;)

7th grade has been very good so far. (Can you even believe it? that tiny little girl over there on my sidebar is actually THIRTEEN years old. A seventh grader. Shocking, even now.)

She is included in several classes, plus her "specials", such as Art, Guidance, Music, Keyboarding, and Gym. She had taken the last year and a half off of the regular gym program, and this year, with the success of a GOOD year, has decided to go back to the regular classes. I was very proud of her. It came as quite a surprise, but I think my little go-getter is back on the track of wanting to not take the easy road. I'm sure it is challenging for her. I'm sure it is challenging to her teachers too wink wink. But she is doing it. and I am really proud of her. I'm the mom who doesnt like the easy way out. We fight for Inclusion, and adjust when we need to. But just quitting because it is too hard weighs on me. Atta girl, C!

I minds well get the bragging out of the way.

Ciarra got a 92 average on her report card last semester.

She is THRIVING in Social Studies. LOVES it. They are doing the stock market game. I am told she is in First place. How? Well, she chose her favorite things to base her stocks on: pepsi, chocolate, apple (the Ipad she lives on) and mattel toys. Too funny.

I sometimes wonder what the typical kids parents think when they hear Ciarra is in first place? Is someone HELPING her, or what? LOL. Ciarra's classes are modified to some extent, fewer questions, bigger fonts, open book tests. she is nailing it.

Her teacher, who is amazing, said to me "She isnt just doing ok, Michelle. she is doing AWESOME!"

Honestly, education, inclusion, special education, modifications, all of those words we live with every day..sometimes it is these extra thoughtful kind words that we remember most. I think those words filled my cup more than any of the negative words can ever UN-fill.

Inclusion works! But it is a process that can drain you, beat you up, and leave you wishing for something better...and then leave you high as a kite at how well it CAN work.

Like getting a solo in the school Christmas concert. and singing your little heart out, not necessarily on key but beautifully nonetheless...with a standing ovation afterwards. 7th grade..the year we nearly panicked and quit this school...has been wonderful. Field trips to Mt Kathadin, school dances, laughing with friends....we are blessed.

About the negatives. Yes, there are some. Teaching her to not be too friendly with strangers, to understand the dangers that are out there, and to never allow herself to be a target by showing too much affection, too much skin, or too much openness is a trial. We WANT her to trust, to be open, to love people. But to be safe in a sometimes dangerous world is difficult. Some silliness has happened, such as showing off her new bra to her friend on the bus...omg...we have had to be very firm and very adamant about when and where it is ok to trust.

Also, Ciarra has gotten it into her head that she is a social butterfly, and I am her captain. EVERY day she asks me "Who's coming tomorrow?" Every day. Several times a day. She believes she HAS to be having playdates every day. Someone MUST be visiting, someone MUST be making plans with her. Or she gets lonely. She is downright spoiled in this regard. I dont know many typical kids who have friends over EVERY day. Being that mom that is so overly worried about her emotional health, I about kill myself trying to make it happen. Friends..constantly. Going to the movies, bowling, playdates at the house, bounce place, kids museum...go go go.

I am immensely grateful to have an in home support person who has been with us for years who has no problem going going going with her. 12 hours a week of help. I am SO grateful for it. Thank GOD for Emily! She is young, energetic, funny, and real. She loves Ciarra. They are like sisters, they fight, they argue, and they love one another. And emily, (thank you thank you thank you em), takes her out a couple times a week to help fill that constant need to be hanging with her peeps. I sometimes worry that Ciarra is lonely. The truth is, she has a better social life than *I* do, by far. Emily and I took matters into our own hands and started a playgroup type thing for teens with DS. At least one day a week, a few of them get together and go DO fun things. They work on social skills and speech, and they have fun. And it fills her never-ending need to be social.

As far as friends, she is very blessed in that she has several really good friends who we can count on to go to the movies with or just hang out at home with. A few of them are our friends kids..and there is always the question of if..and how soon..they might outgrow her. It is a reality that sometimes sucks. But yes, while Ciarra still is waiting patiently (NOT!) for Monsters Inc 2, some of her peers are more into "The Devil Inside". I am grateful for her innocense, but yes..it worries me. Thank God for several of her friends who have stuck around for the ride since they were tiny. Jade is one, you can see them in the fifth row from the bottom on the sidebar there. She and Ciarra's friendship is for a lifetime. They are funny together. Fight, make up, love, laugh..and make messes. Oh BOY, do they make messes. But we love her. and I love watching their friendship continue over the years.

I also hope that as those years pass, I will remember to keep blogging, keep recording her life story. Not just for her, or for me, but for all the parents who will come along and wonder what it is really like to be a teenager with Down syndrome. This is it. Real life, no whitewashing. The good and the bad.

PS: for those who asked about Jesse and Kristin?

Jesse is currently a Junior in high school, honors, driving now, still playing football. He has a girlfriend we adore (she is FABULOUS with Ciarra!) and a generally great kid. Mouthy, too big for his britches, but calls Mom to see if she wants a tea on his way home from practice...good kid.

Kristin is back in college, studying for a Business degree. She works with children with autism and loves it. She will be 24 this week. She is smart, determined, funny, and strong-willed. She is also immensely patient (thats new!) and as honest as the day is long.

The three of them are not a storybook kind of family. There are no rose-colored glasses here. They fight. Ciarra annoys them. They annoy her. No one treats anyone with kid gloves, they just are very real. she isnt breakable, and they arent, either. Siblings. Love and hate and slamming doors. But they love one another, and I adore them.