Thursday, March 1, 2012

Better Living Through Peek-A-Boo

I haven't been feeling very brave.

I knew it was here somewhere...  It must be under the 19+ loads of laundry that I have dealt with (so far!) in the last 4 days.  Maybe I left it in my work bag?  Perhaps I kicked it under the couch by accident.  Whatever, where ever... the last couple of days I have been wandering around like the cowardly lion, looking for my courage.

Courage really isn't the right word for it either.  Neither is "special" or "blessed" or any other adjective that people use to describe "Special needs Moms". You know that thing that makes my magic helmet and the proverbial double edged sword less heavy?  That. 

The cause?  Nothing really.  Not any one thing and everything, all rolled up in puff pastry.  Probably a little bit of a crash too, as we are still coming down off the kids birthday's and Wyatt's new-found sitting prowess.  It happens.  No matter how hard you try, you do have days where you are worn down.

I came to a realization the other day as I stood downstairs at my bar, waiting for my morning cup of Tassimo.  I glanced over at a stack of books and saw our copy of "What to Expect the First Year".  As I stood there, waiting for the last few drops of coffee to fall, I smirked and half chuckled to myself.

There is no manual with a special needs child.  There is no manual for Down syndrome.

I used this book religiously with Quinn, our eldest.  Each month, I was delighted with each new thing that he had picked up.  Most of the time, I lauded him for being "ahead".  As parents, we dream and delude ourselves all the time.  We aren't supposed to compare our kids with others, but we do it without fail.  "See that?  With that fine motor control, he could be a surgeon or a dentist!"  "With those long fingers, he could be a concert pianist!"  "He's three months ahead with his speech!  Let's hope he stays out of public office..." and so on.  Constant comparison, constant validation.  As the title says, I knew what to expect with him.  There were very few surprises.

Zoe?  Pretty much the same thing.  She will always have the "six weeks corrected" with each of her milestones.  This makes it a little worse in a way, as "...she certainly isn't acting like a preemie!  Look at how far ahead she is!" 

Then, there is Wyatt.

With him I got a list of facial features, potential physical ailments and things he cannot do.  There is no set list for "can" or "will" or "when".  Information is partial at best.  There is no comparison, no handy yardstick. Instead of a book telling us "What to Expect..." we now have to embrace a whole new philosophy:  "In His Own Time".  There is no instant gratification with this one.  It takes a metric f☠ckton(ne) of patience and another still of sweat equity.  And time.  Lots and lots of time.

To me, everything happens for a reason.  As the fates would have it, I lost "What to Expect..." until a couple of weeks ago. I remember looking for it frantically at a few points, hoping to find an answer to some obscure question or another.  It's being lost until now has turned into a blessing in disguise, really.  For all our good intentions, month by month, week by week detailed comparisons between the twins would have been inevitable.  Contrasts would have been more obvious.  The differences at various points would have been heartbreaking.  Instead, this book remaining lost for so long kept everything a little more vague.  At least in this one instance, a little bit of ignorance was bliss.

I would not begrudge Wyatt a single thing.  Any dedicated parent will say that they would do anything for their kids.  I'm just putting my money where my mouth is.  Each and every thing has to be thought out; you constantly have to be aware of what skill you are trying to develop and what the ramifications are.  This morning for example, we had half an hour of controlled kneeling and quiet play therapy, followed by fun tambourine time.  I have learned that Zoe will be intrusive, no matter what you do;  while I am changing Wyatt's diaper, she is trying to step over him as she cruises around me and chatters.  Instead of pushing her away, I set her up on the double pillows too.  The babies got some face to face talking time as I gently held my sons hips and shoulders in alignment and his knees together.  They pulled a toy back and forth between the two of them, both of their chests on the pillow and when that became tiresome, Zoe rolled over and lay half propped on them, still chattering over her shoulder to her brother and I.  They each got a tambourine and after the usual back and forth trading between the two of them, I took a little time with each of them and explored the different sounds and actions.  Wyatt at first was sitting up, but he was obviously tired so he lay propped up on a nursing pillow and held his tambourine (and the maraca he was hitting it with) up over his head.  We patted, hit, shook and head butted our jingly noisemakers for a couple of minutes until Sean and Quinn returned and Zoe almost bowled me over as she ran for the gate, screeching for joy.  Sounds like a fun half hour, right?  The kneeling was to continue strengthening his core, getting his hips and legs ready to that unsupported and be able to get those knees under him so that he may learn to crawl.  Bringing his hands together and banging objects together are not milestones per se, but are important skills to refine as they lead to so many others.  Finally, connecting the dots between action and sound is an ongoing lesson, especially with kids with Down syndrome who are so visually oriented.

With Quinn, I tried to add certain skill enhancing activities, just like a lot of parents, simply because I could.  If I forgot or didn't have enough time, it wasn't that big of a deal.  He picked things up very easily.  With Wyatt, I have to.  Like Yoda says "...There is no try."

I found my "brave" last night.  Little did I know it was hiding under a blanket.  Wyatt would not sleep for love nor money and he was hanging out with us downstairs.  I had a fire going and a glass of wine in my hand and I was getting a little bit discouraged with him as he would not sleep, despite my best attempt at a Zen atmosphere.  I took another sip and started scrolling through my phone.  I heard a "YAH!" and looked over.  He grasped the edge of his blanket in both hands and pulled it up over his head.  Tired, (as we have been working on peek-a-boo games since they were very young) I gave a half-assed "Where's Wyatt?", only to have him quickly drop the blanket and grin at me.  I could not have been more surprised.  I gave him the "There he is!" and looked over at Sean.  He asked  "Where's Wyatt?  Where's he at?"

The blanket went up again.

Then it came down.  "THERE HE IS!!" we both yelled in unison. 

We did this for a good ten minutes.  Sometimes he would peek around the edge of the blanket and grin at me.  Sometimes he would get distracted by the TV and then yell at me and make different sounds at me to continue our game. He would go back and forth between both of us.  It was awesome.

I know... it's just peek-a-boo, right?  Not really.  See, much like our kneeling and tambourine time, it means a lot more.  It gave him an opportunity to communicate with us, one that he initiated himself.  We got to make eye contact and react to one another.  It also showed us that he is working on object permanence, that he has made the connection that when his vision is blocked by something (in this case the blanket), we and the world still exist.  As this is a visual task, it is not surprising that children with Down syndrome progress with it faster.  He showed us that cognitively, he is coming along.

For us, it was a much needed shot in the arm.  Physically, the evidence was there that he was progressing.  Now we have proof that everything else is too.  Each little step answers a few more questions and gives us a little boost that keeps us going.  Forget chemistry, we have better living through peek-a-boo.

Bravery?  Where are you?

Oh there you are!  I see you...



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10 comments :

  1. I really loved this post. I was there with you on the sofa in the "did I just see what I thought I saw or was that a coincidence?" moment. I think those moments are the gems that make us appreciate the beauty and complexity of human beings. If our children do nothing else, they allow us to celebrate each and every milestone that they hit, as they are all triumphs. Such a sweet and special moment. Thanks for sharing (p.s. I never was a great fan of the what to expect books- they just make every parent paranoid!)

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    1. LOL. Yes, they do ramp up the fear factor, don't they! Thanks for the comment as always. I'm so glad when another parent says "me too!". :)

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  2. This brought tears to my eyes. I was there in your home, feeling the heat of the fire and also remembering the frustration of being tired and not having the baby go to sleep. I remember too, that shift in gears that comes when your child reaches that first birthday and is, technically, no longer a "baby". The tears came when I could envision that adorable face appearing, then disappearing and re-appearing from behind the blanket. Milestone? Indeed!
    I think your brave and determination will be just fine and are not really gone whenever they too disappear behind a blanket.

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    1. Thanks so much Aunt Lin. I can't tell you how much your love and support means to me.

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  3. That's AWESOME! Made me teary, too, to read that.
    (And, I admit, hopeful, too. We've been trying to play Peekaboo with our almost 10 month old baby girl with Ds, so far without response, so your story sounds very familiar and I can TOTALLY imagine how excited you must be!)

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  4. YAY BABY!!!! My babies are older and I remember what every little step meant for me as a mommy! Tell that awesome sweet lil man of yours that he is doing AWESOME! play a round for me will ya?

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  5. I am currently a Disability Services major in college and for my one class we had to find a blog by a parent who has a child with a disability to follow and discuss with the class every week. I have been following your blog for a couple weeks now and I get so excited to talk about little Wyatt and what an amazing family he has and the struggles and victories that you all over come daily! Someday down the road I hope to have children and if I am granted a special needs child I can only hope that I can handle everything that comes my way as positive and good as you do! You are doing an amazing job and are a great mother! Thank you so much for sharing your story!

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    1. Thank you so very much for your kind comment. It has helped me through some dark spots. It is permanently on "The Wall" for inspiration!

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