The Firsts of Special Needs Parenting

This morning I read a great article about the “other” firsts that parents go through that we never really talk about.  Things like the first time you realized that you can’t call your mom to fix things, because YOU are the mom now.  And the first time you realize that you aren’t completely screwing up your kid.  Go read it.  It’s great.  http://www.huffingtonpost.com/kim-simon/theres-always-a-first-time_b_4641690.html

After I finished reading, I started thinking about the firsts that we, as parents of a child with special needs, have experienced.  So I decided to share them with you.

The first time a doctor looks at you with concern in their eyes and tells you that there is something different about your baby.  Maybe it happens right after your baby is born, when you are exhausted and full of birthing hormones and pain killers.  Maybe it happens a few months later, when your child hasn’t met any of their milestones yet.  Maybe, like me, it happens while you are still pregnant.  But whenever it happens, you won’t forget it.  The doctor with sad, worried eyes, speaking in low, soothing tones about statistics and DNA and special services.  That sinking sensation in your stomach as the words sink in.  The feeling of rising panic and helplessness as you try to figure out how “bad” things are.  The resignation and determination that follows, as you swear to yourself and your child that you will do everything necessary to help and protect them.

The first time someone asks what is wrong with your child.  And the mother bear inside you roars as you calmly explains that there is NOTHING wrong with your baby.  She is just a little different from other babies.  All babies are different and special.  And you will educate them about the syndrome/condition/whatever that your child was born with, and why it is not something that deserves pity, but that should be embraced.  All while screaming profanities at them inside your head.

The first time your child hits a milestone that you have all works SO hard towards.  Kids with special needs often develop at a different rate than other kids.  Laurel crawled at five months.  Ellie crawled at 18 months.  While we celebrated Laurel’s accomplishment, like any parents would, there was a bit more celebration over Ellie’s.  Because she had worked so much harder for it.  We worked on crawling every day for months on end.  Her physical therapist came every week and showed us new exercises to have her do to help strengthen her naturally low-toned muscles.  Mostly Ellie hated it.  She cried.  I cried.  Laurel cried in sympathy.  But one day, right around Christmas of 2011, she crawled across the floor from Chev to me.  And we all cried again, but in happiness.  Laurel danced around us, clapping and cheering for her Sissy.  It was a very good day.

The first major setback.  At some point, you will think that you have this whole special needs parenting thing under control.  Your kid is progressing along in all major areas, a couple of your specialists have told you that your kid doesn’t need to come back, and you are flying high. That is when it happens.  Your kid suddenly stops talking or eating or walking or starts screaming whenever you get them wet or pick them up too fast or dress them in anything scratchy or they get really sick and no one can figure out why.  And suddenly you are back at a new specialist’s office for a new round of tests, or you are meeting with new therapists for evaluations.

The first time a doctor tells you that you don’t need to come back to them.  Specialists are just part of life when you have a child with special needs.  For us, it has been pediatric cardiologists, eye doctors, ear nose and throat doctors, gastrointestinal doctors, and bone doctors.  The first year is a relentless round of appointments, tests, and observations.  But one day, one of the doctors will smile at you and tell you that your child doesn’t need a follow up appointment, and that unless you notice something else that pops up in a few years, they don’t need to see either of you again.  And you leave the office with a bit more spring in your step, mentally checking off a little box in your head:  GI issues….DONE!  And that feels SO good.

The first time you realize that you have GOT this.  One day it will hit you that you really do have this whole thing figured out.  You are an expert in whatever special need your child has.  You can spew off the list of doctors, practices, therapies, and medications that your child is seeing, doing, and taking.  You know who to talk to at the state or county government office that will actually listen to you and try to help.  You know what an IEP is, and have faced down the school board at least once.  But that none of that really matters.  What really matters is that you have learned to put all of that stuff aside and just play with your child.  We can get lost in the red tape sometimes, but one day you will realize that the most important thing you can do for your child has nothing to do with which therapies they receive.  You will find yourself sitting on the floor, playing with trains or stuffed animals or stuffed animals riding on trains, and you will realize that THIS is what it means to be a parent.  Not a parent of a special needs child.  Just a parent.  Because that is what you are.  And you will grab your little one and hug them close (whether they like it or not), and tell them that you love them, that you will always love them, no matter what.  And they will look at you like you are crazy and that is ok.  Because that is what all kids do.

Crawling

Crawling

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Gold Star

Ellie is my Gold Star

Ellie is my Gold Star

I received an anonymous message from someone who asked if I had ever considered the possibility that having a child with Down syndrome was a punishment from God for going against his natural design and bringing children into a house of sin.

Once I finished laughing, I decided to answer this person publicly.

No. No, I have never considered having a child with Down syndrome to be a punishment for being gay and daring to have children.

In fact, I have never considered having a child with Down syndrome to be a punishment for anything. The idea that Ellie was sent as a punishment is completely laughable. She is the sweetest, most wonderful child I’ve ever known. She lights up my days, fills my heart with music, and brings me more joy than anyone or anything else ever has. If that is a punishment, sign me up for more!

I have never believed that the powers that be go around handing out punishments and rewards based on our actions. But if they did, Ellie would be a reward. The best reward. In fact, if that IS the way that it works, then I’d be willing to bet that the parents of kids with Down syndrome all did something REALLY great at some point.

As for the implication that being gay should be punished…. Kindly go fuck yourself. I refuse to get into the whole gay/sin issue here, just for your benefit. I will simply say that being gay isn’t a choice. It is how I was made. And guess who made me? Yeah, the big guy upstairs. In his image. Just like you. Who the hell are you to judge me, just because I was made differently from you? Please un”Like” me and go live out your life in bigotry somewhere else.

So…there you go. Ellie can’t possibly be a punishment for Chev and I being gay. Because God doesn’t go around handing out gold stars and demerits for being who He meant us to be. And if He did, Ellie would be the brightest gold star of all.

The Most Wonderful Time of the Year

I love the holidays.  I really do think it’s the most wonderful time of the year.  And the girls are just making it better.  Every year they understand it a little more, and this year the magic is definitely blooming in their hearts.  But I still have some things to bitch about when it comes to the holidays.  And, being the generous person that I am, I thought I’d share them with you.

1.  Here comes Santa Claus……and there go my kids
There is a common occurrence among young children; they want to see Santa, oh god they want to see Santa, until they actually see Santa. Then, holy crap, Santa is the scariest man in the world.  Ask Laurel.  Last year she could not wait to see Santa.  We were the first in line to sit in his lap at Chev’s company Christmas party.  Then we got up there and this happened:

Ho Ho Holy Shit this is funny

Ho Ho Holy Shit this is funny

Laurel is crying, I’m laughing, Ellie is all “who the hell is this guy?”, and the elf is just hamming it up.  I’m guessing this year will be more of the same, but times two.  However obsessed Ellie is with the man in red, she had finally developed a healthy fear of strangers. So please, mother of a perfectly behaved 7 year old who has obviously forgotten what toddlers are like, cut us some damn slack.  Thanks.

2.  Silver Bells and Sensory Overload

Bright lights, shiny colored presents, loud music, people everywhere, lots of food….its all a bit overwhelming, isn’t it?  Even as adults we can get exhausted from the whirlwind of the holidays.  Triple that for little kids.  Laurel doesn’t deal well with loud sounds or lots of noises at once.  She says they “scare-a mines ears.”  Add in her normal three year old fear of strangers and holidays can be pretty rough on her.  And yes, uncle she only sees three times a year, you count as a stranger.  And no, she will NOT willingly sit on your lap.  Please stop trying to make her do so before she has a complete meltdown.  Now multiply that by one hundred for Ellie.  While she likes people, she doesn’t particularly like being pinched, hugged, or patted thirty thousand times in one day.  Add in all of the sights, sounds, and smells that can go along with a large gathering and there is a very good chance that I will be carrying her around all day because she has suddenly become a Velcro baby.  I’m her safe space, her home base.  If you see her clinging to me like a baby opossum, its because she is done.  Just done.  So leave her alone.

3. Cakes and Cookies and…..all the other stuff we can’t eat.

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Sorry, kid, not for you.

In addition to Down syndrome, Ellie has Celiac disease.  We found out this summer, so this is our first gluten free holiday season.  And I’m already dreading it.  Nothing like telling your kid that she can’t eat ANY of the cookies at the party.  Or the crackers.  Or the cake.  Or the sandwiches.  Or the turkey, because it was roasted with cornbread stuffing inside of it and now the whole thing is contaminated, which doesn’t really matter, because I wouldn’t trust it anyway without reading the nutrition info label, because frozen turkeys are often injected with stuff that has gluten in it, so it might have been contaminated from the day it was killed.  Oh, and I’ll be needing a brand new stick of butter and clean knife to use to butter her gluten free bread that I brought from home, because there are gluteny crumbs in the butter and now the entire stick is contaminated and she can’t eat that or she’ll get explosive diarrhea for the next three days and I do NOT want to deal with that, so instead I’ll deal with your rolled eyes and snarky comments behind my back.  And NO she can NOT have just one cookie.  I know its a holiday and you think I’m just being mean, but unless you want to stay up all night with her while she cries because her little tummy hurts so much that she wants to die, just stfu and put the cookie down.  And for the love of god, do NOT give Laurel a cookie in front of Ellie.  Unless you want to unleash the Hulk and have Ellie lose her mind and smash everything she can get her cute little hands on.

4.  Great Expectations

My girls are three.  They like shiny things.  Especially if they are at eye level.  They like to pick them up and shake them and put them in their mouths and play with them and drop them.  They also like stairways to unknown lands and doorways to uncharted territory.  It is a child’s job to explore the world around them.  This is why you will find nothing breakable placed less than four feet from the floor in my house.  This is why we use plastic plates.  This is why we have a gate blocking off our kitchen and locks on our attic and basement doors.  Because children are meant to explore.  If we are invited to your house for the holidays, do not expect them to suppress their nature just because you didn’t want to child-proof your house.  It’s not going to happen.  Don’t expect them to listen to you if you tell them not to touch your grandmother’s antique snow globe which you place oh-so-conveniently on the coffee table.  Don’t expect them to listen to you if you tell them to stay out of the spare room which you left wide open.  It isn’t going to happen.  They aren’t being bad.  They are doing what they are suppose to do.  You are an adult.  Your job is to be smart enough to figure this out.

5.  Holiday Q&A

If your family is like mine, the holidays are the time you see relatives you don’t see the rest of the year, so it’s natural to want to catch up with them.  Its natural for them to ask questions about the your kids, and what they are doing these days.  I get that.  Please, ask me about Laurel’s love of painting and Ellie’s passion for music.  I will wax poetic about it for hours.  But there are some questions and comments that can really piss me off.  Like “Why isn’t Ellie talking yet?  That doesn’t seem normal.  I’ve never heard of downsy kids not being able to talk.”  Oh, really?  In your vast research of children with Down syndrome, you missed all of the information about low muscle tone and poor vocal planning that a large number of kids have to deal with?  Maybe you should do more research before implying that my kid isn’t normal right in front of her.  She may not be able to talk, but she understands everything you say.  And don’t use the term “downsy.”  People with Down syndrome hate that shit.  So do their parents.  Would you call a person who uses a wheelchair “wheelsy.”  I certainly hope not.  Ellie is a person first, thankyouverymuch.  Then there are the barely-veiled questions and comments that imply that you disapprove of my parenting style.  No, I’m not going to let them eat candy before dinner.  No, they are not potty trained yet.  Yes, I really am going to let Laurel run around with the boys instead of making her sit still on the couch like a little lady.  Yes, I really am going to read the ingredient labels of every single thing on the table before I put it on Ellie’s plate.  No, I’m not going to make Laurel hug or even talk to you.  So back off.

6.  Gifts Gifts Gifts

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Its beginning to look like consumerism!

Want to know what the girls are getting for Christmas?  Laurel is getting a doctor kit and Ellie is getting a little train set.  They are both getting four things in their stockings, and I’m going to make each of them a stuffed dinosaur.  That is it.  Seriously.  And no, it’s not because we are poor (which we are).  It is because they are three and don’t need anything else.  They don’t care about the newest, coolest toy on TV, because we don’t have cable.  They don’t a Doc McStuffins Princess Sophia Barbie Dream House because they don’t know that they exist.  And you know what?  They aren’t deprived in any way.  They are THREE.  They don’t need iPads or bounce houses or twenty new dolls.  We have enough stuff.  They don’t play with half the toys the already have.  Laurel would rather paint than play.  Ellie would rather dance than dress up dollies.  And you know what?  I’m just fine with that.

 

Again, I really do love the holidays.  It is my favorite time of the year.  I wish you all a happy Thanksgiving, happy Hanukkah,  happy Yule, merry Christmas, happy Kwanza, and a wonderful New Year.

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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?