Loving Ellie

April 047

Ellie with her walker.

Someone asked me the other day, what it’s like to raise a special needs child, especially when I have a “normal” child the same age.  Do I compare them?  Do I treat them the same way?  Do I ever wish that Ellie were more like Laurel?  They wanted me to be honest, but I wasn’t.  I told them it was just like raising any two kids, and of course I don’t compare them or treat them differently or wish one was more like the other.  In other words, I lied out my behind.

Because here’s the thing.  It is hard to raise a special needs child, although not as hard as some people seem to think it is.  I’m no saint.  I’m just a parent, like any other. Yes, Ellie has therapy three times a week (physical, occupational, and speech), but they come to our house and they don’t care if we are all still in our pajamas.  They work with Ellie on a variety of skills, from walking to talking to eating with a spoon.

Ellie also has more doctor appointments than most kids.  She sees a cardiologist, who checks to make sure that the heart defect that she had repaired when she was three months old is still pumping along nicely.  She sees an eye doctor because she is nearsighted and has a head tilt, due to the muscles in her eyes not lining up properly.  (Which she’ll be having surgery next month to fix!)  She has had a sleep study, where neither of us got much sleep, that proved my suspicion of sleep apnea.  Which sent us to a pulminologist, who sent us to an ENT, who removed her tonsils and adenoids, which resulted in her refusing to eat or drink, and that resulted in a week-long hospital stay.  She also gets her hearing, thyroid, and blood levels checked every 6-12 months.  Because there are extra things you need to watch out for when your child has Down syndrome.  Extra things to worry about.

Ellie does not talk, so communication is tough.  She knows how to sign, but she often decides that she doesn’t want to do so.  She’d rather point and cry and grunt at us.  Which is VERY frustrating.  But we’re working on it.  And one day, she’s going to look at me and say “I love you Momma.”  And everything will be worth it.

So, yes, raising a special needs child is hard.  But you know what?  Raising a “normal” toddler is really freaking hard, too.

Laurel has no problem walking or running or climbing the five foot tall cat tree and then trying to jump off of it, onto the couch…which is four feet away.   Or spinning in circles until she falls over, smashing her face in to the wall on the way down.  Or doing a million other things that result in bruises for her and heart attacks for me.

Laurel has been able to talk for a couple years now.  And talk she does.  All. Day. Long.  She keeps up a non-stop narrative of the day, often repeating phrases over and over, like a mini Rain Man.  She also likes to parrot everything Chev and I say.  It’s like an echo in our house.  Especially when one of us lets a curse fly, then it’s “shit shit shit” for at least the next five minutes.  She has NO problem telling us what she wants, or more commonly, what she DOESN’T want.  As in, “NO Momma!  I no want a bagel and cream cheese!  Noooooooooooo!!!!!!!!”  (Usually after she just begged me for the bagel that is already in the toaster.)  So lack of communication isn’t a problem.

The next question was whether or not I compare them.  Of course I do.  But not in the way you may think.  I know that Ellie is over a year behind in some parts of her development, so I compare where she is to where Laurel was a year ago.  When Ellie starts up with some weird new phase, I think back to when Laurel went through the same phase, and if it’s been less than a year….score!

I also play them off of each other.  Again, not the way you may think.  Ellie will stay in her toddler bed all night, no matter what.  Laurel will wake up and try to come in bed with us, after we’ve fallen asleep.  So I point out t0 Laurel that Sissy stays in bed like a big girl; she just lays back down when she wakes up and goes back to sleep.  Or I point out that Ellie tasted everything on her plate, like a big girl.  Doesn’t Laurel want to taste her nice spinach, too?  And you know what?  It works.  Even though the truth of the matter is that Ellie simply can’t get out of her toddler bed because I have a crib bumper tied up along the side so she doesn’t roll out (kid inherited my tossing and turning nature), and that she hasn’t hit the picky eater stage yet, telling Laurel that Sissy is doing these things because she is a big girl encourages her to do them, too.  It really doesn’t work both ways.  Ellie couldn’t care less that Laurel keeps her colored pencils on the paper, and not in her mouth.  Ellie’s still going to eat the pencils.

Do I treat them the same way?  Not really.  Would you treat a three year old and a one year old the same way?  Probably not, and that’s basically what I’ve got.  Ellie is like a one year old, trapped in an almost three year old body.  Laurel is starting to understand cause and effect.  If she throws all of her food on the floor, the dog will eat it, and she won’t have dinner.  So she doesn’t throw her food on the floor anymore.  Ellie still forgets this valuable lesson.  Much to the dog’s delight.  Laurel understands (and hates) time outs.  Ellie thinks it’s fun to sit on the bench for a couple minutes.  She can swing her little legs. It’s awesome.  Laurel’s motor skills are more fully developed, so she gets to help me make lunch.  She can cut up a banana with a butter knife.  Ellie can only help by standing on the chair and watching us.  (and snitching food during the prep phase)  So, no, I don’t treat them the same way.  I’m harder on Laurel, just like you would be harder on a three year old.

Last but not least…..Do I ever wish Ellie was more like Laurel?  Nope.  Really, I’m not kidding.  Ellie is the easiest, happiest kid I know.  She doesn’t talk back or throw massive tantrums if she doesn’t get her own way.  She is just as happy painting as she is watching Marley and Me (a current favorite), but is happiest sitting in my lap while I read a book to her.  I love her just the way she is.  Perfect and content and sweet and adorable.  Laurel, on the other hand…I will admit to occasionally wishing she were more like Ellie.  Especially when I’ve just cooked a big dinner full of healthy foods and the little bugger won’t eat any of it, while Ellie is chowing down on chick peas and avocados.   But for the most part, I’m happy to have them both just the way they are.  I can’t imagine having two kids like Laurel (bless all of you who have “normal” twins, I don’t know how you survived this age), or two kids like Ellie (bless all of you who have more than one special needs child, I don’t know how you have the time and energy!)

What’s it like, raising twins who are so different?  Maybe it’s not so different as you may imagine.  We hug them, love them, play with them, teach them right from wrong, and hope they don’t grow up to be serial killers.  What more is there to parenting?


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