The teenager emerges

They say you can always tell time is passing by looking at your children.

The other day, I realized time was passing by looking at Mishayla's room.  Lady Gaga and Justin Bieber posters on the wall.  A "Girl Power" placard in pink and black letters.  Jewelry and clothes everywhere.

This was clearly the room of a teenager.  She turned 13 on Friday.  She was happy with her birthday.  Since I could't find a "Lady Gaga" birthday cake, I ran some pictures off the internet, cut one out, and fit it to her cake.  She was thrilled.  Then we spent the next day shopping at Target, coming out with piles of clothes with flowers and sequins and all those girly things.  My daughter is nothing is she is not girly; most of what she picked out was red and pink and sparkles. 

I admit some of this probably comes from me. Red and pink have always been my favorites.  And things that sparkle? I can never get enough.

All was fine until she wanted the hot pants.  Of course Dad said no to those.

The highlight of her birthday was hearing from her brother Jared, who is firefighter with the U.S.Forestry Service, currently working in northern Nevada.  She misses him, as we all do.

Another highlight of her birthday was doing lunch and shopping with her two wonderful caregivers, Pam, Jen and Brie.  These wonderful caregivers made Mishayla feel special on her special day; they are awesome!


Mishayla and her Lady Gaga cake

So as you can see, much of Mishayla is like a typical thirteen year old.  But of course, we know, a lot of her is not.  She still needs assistance with things most 13 years no longer do.  I wonder sometimes if that isn't my fault.  As mothers, we care for our children, and most children will clearly tell you when it's time to stop "mothering" them.  For instance, with Jared, by the time he was 8, there was no more going near him when he was dressing, and he protested vehemently when I tried to kiss him or make a fuss over him. He insisted he was clearly too old for this sort of thing.

Since Mishayla didn't do this, I'm the one that has to say it's time she learn to do certainly things on her own as much as possible.  We purchased a new shower head she can take on and off so she can learn to shower without help, and do her hair.  I still have to help her wash her hair because she has a severe scalp condition that requires really cleaning her scalp well.  Things like managing her monthly menstration is also a challenge, where she currently needs my assistance, and the assistance of her caregivers.

Everything with Mishayla is in slow motion.  She can learn anything, but what kids generally pick  up on their own takes Mishayla months, sometimes years, to grasp.  I think she will be able to go these things.  But as her doctors said at her birth, it's never going to be a sprint with Mishayla, it's always going to be a marathon. And that is okay. We'll get there.

All parents worry about their children's futures.  My son went through of series of things he wanted to do with his life before he decided firefighter was the career for him.  But what about a child with an intellectual disability? Current statistics show that only about 10% of adults with these disabilities end up having any kind of gainful employment.  When I worked as a advocate for the disabled, we got lots of calls from parents of "adult children" at their wits end, unable to help their child assimilate into any kind of productive life. Many of them spent day after day on the sofa watching TV, their lifes without direction or purpose.

Mishayla loves the computer. She can make videos with audio on iMovie, which is something I don't think I've even tried to do.  With any child, you try and capitalize on their strengths and their interests.  Mishayla will be partipating in a computer class at school this year, which I know she will enjoy, but I also hope it may hone some skills for her that may help her in the future.  All people need to be productive and contribute, and should be given those opportunities.  I plan to do my best to help Mishayla have that. 

One thing having a child with a disability teaches you is what is important.  I have two main wishes for my daughter as she begins her unique journey as an adolescent; I wish her joy, and I wish her health.  Everything else beyond that, let's face it, is gravy.  We still have issues to face with her health. But I do believe she is a happy kid.  I hear her laughing in her room as I write this.  She laughs alot.

And what more could any parent really ask for?




 







Down Syndrome Parents: The Eternal "Us"

In our world today, and in our busy lives, it is becoming harder and harder to connect with others.  Now, I don’t mean the social media kind of connect where you share your innocuous daily routine, such as what you had for breakfast.  I’m taking about real connection with another human being on an emotional level.  A connection that is made by a common bond; by another person that understands your pain, as well as your joys.

Parents that have a child with Down Syndrome have these bonds.  It doesn’t matter who, or when or where.  When you see a parent on the street, holding the hand of a child with those oh so familiar characteristics that are the same as your child, you connect.  You look at them, they look at you, you share a smile; a smile that doesn’t need verbal validation, because you know, and they know.  It’s an unspoken, silent bond of empathy and understanding.

Sometimes months will go by without having it happen.  And then, out of nowhere, someone will reach out.

That happened just the other day.  Oddly enough, it was Father’s Day.  We were having breakfast in a local Twin Cities restaurant.  The waitress, an attractive woman probably in her early forties, came to take our order.  Like many people, she tried to engage Mishayla, who just clung to Tony, pushing her face against his arm. 

“Does she talk?” she asked.

“Yes,” I replied.  “When she wants to.  She has a pretty severe stubborn streak.”

“So does my son,” she said. “My son is 14.  He has Down Syndrome and Autism.  They say the autism is why he can’t speak.  It is hard for me to know what he wants sometimes.”

Her eyes were starting to fill.  I looked at her, and even though I didn’t know this women’s name, I knew her pain.  I knew the ache of having a child with an intellectual disability. 

She proceeded to tell me he comes home from school sometimes with bruises on his body, and that no one at the school will help her figure out why or where he got them.

“He can’t tell me who is doing this to him,” she said. “And nobody at the school will help either.”

Right away that familiar anger rumbles through me.  Thankfully, Mishayla never came home with bruises, but she has been neglected in a classroom before, so I know what that feels like. I know what  it's like to have your child mistreated.

“You need to report it,” I told her.  “There is no excuse for that kind of thing.”

She said where she was living, there weren’t enough paraprofessionals in their school district, because of budget cuts.  What struck me odd was that this particular city in Minnesota is relatively wealthy, and I hear has very high property taxes.  “School districts are great for using funding as an excuse for poor care.  That’s no excuse.” I replied.  “They have an obligation to our kids.”

She had reported it, she said.  She had a sadness on her face.  “I don’t know what to do with him sometimes.  People have suggested I place him.”

Her voice cracked just a bit.  Placement.  The dirty word that embodies a nightmare for most parents that have a disabled child.  It comes with this abiding fear that keeps you up at night, wondering if there will come a time when you will no longer be able to care for your child; your child who will never truly become a fully functioning adult; who will need to depend on someone, in some capacity, for the rest of their life.  Will you be able to step up to the plate forever? If not, who will you trust enough to take care of this human being who is the essence of your heart.  It would be like putting your life in another person’s hands.  Yet it may come to pass for any of us in this situation.  I know the worry.  I have it as well.

For this woman, it was clearly a possibility.  While Mishayla seems to be higher functioning (like most Down Syndrome children, she is in the mild to moderate range of intellectual disability) from the symptoms of this boy, his Down Syndrome made him lower functioning than most.  Then to add Autism Spectrum Disorder makes it even harder.

She went to wait on others.  I so wanted to help this woman.  Like she was a family member, or a close friend.  I wanted to impart something important, some sort of comfort or wisdom, some magic words.

But I couldn’t really. There just aren’t any.  I could just say I know your pain.  I know it intimately. 

She brought our breakfast, and later returned to see if we needed anything further.  She tried again to talk to Mishayla, who just hid her head.

“My son does that too,” she said.  “And he grunts a lot.  Loud.”

We laughed.  She was surprised Mishayla didn’t wear glasses, since so many children with Down Syndrome have vision issues.  “My son’s glasses are the size of Coke bottle bottoms,” We laugh some more.  I told her while Mishayla doesn’t appear to need glasses, she has other issues. She has a heart condition, and a pacemaker.  She has scoliosis, which has to be monitored. 

We were getting ready to leave.  We wished each other well.  As I walked out of the restaurant,I had wished I had gotten her name.

But in the end, it doesn’t matter.  We shared a connection, a bond, a very finite moment of understand, that goes beyond anything most people will ever experience. We commiserate in a world where there is prejudice against our children, and often, criticism of us because we chose to bring them into the world. No one can know the challenges, and the joys, like we do.  We parents with these children can be from different races, religions, educational backgrounds, etc.  Yet we are bound by these children who are our blessings, our joys, and as much as we love them, at times, our greatest burdens. 

It’s enough that someone out there understands.  It's enough to know that no matter what, you’re not alone. 

Holding your breath, shoes that drop and other cliches

We've all heard these expressions.  They basically mean you are waiting for something bad to happen.  And I think it's normal for most people, at particular points in our lives, to have these feelings.

But when you have a special needs child with physical problems, these feelings can become constant, and can really take over your life; sucking the joy out of everything.

These feelings have been a transient fixture in our lives.  When Mishayla was very young, and was going through many procedures and surgeries, Tony and I had these feelings quite a bit.  After esophageal, bowel and heart surgeries and procedures, Mishayla would sniffle, or cough, or throw up, or do things that any normal kid (or adult) would do on occasion, and we would be in a panic.

And then there are the trips to the doctor for check-ups.  Going to the doctor's office, holding our breath. What will he find this time? More heart anomalies in the EKGs? And why is she so skinny?  Will they find Celiac's Disease? What hurdles await us? It could be downright emotionally exhausting.

But as she grew, and these problems were rectified, and she remained relatively healthy.  Unlike most kids with Down Syndrome, she didn't have problems with her ears, nor was she ill on a constant basis.  She became a fairly normal kid as far as her health was concerned.  Of course there was the yearly check-up at the cardiologist, and the gastroenterologist, but other than that, it was the normal trips to the pediatrician just like any kid would have.

But lately we have been holding our breath again.  When an occupational therapist at Mishayla's school commented about her oddly protruding left shoulder blade, I didn't think much of it.  Why? Because people tend to over-analyze everything about special needs kids.  The slightest thing that doesn't look right they insist is a big deal, and you end up back at the surgeon's office, sometimes for no good reason at all.

So she had a protruding shoulder blade, I thought.  But one day when I took her to the doctor for a cold, I told her marvelous pediatrician, Dr. Keeler, about it.  Sure enough, Dr. Keeler said she needed x-rays.  She might have scoliosis.

Scoliosis is an abnormal curvature of the spine, which is not just indicative to children with Down Syndrome.  When young girls reach adolescence, and their bodies begin to grow, sometimes the spine can grow abnormally.  Sometimes it can be treated with a brace.  Sometimes surgery is required.

When the diagnosis was confirmed, and an appointment was set for Mishayla to see a specialist at Gillette Children's Hospital here in the Twin Cities, I spent hours on the internet; looking things up, reading testimonials by parents as well as young girls that had had the surgery.  Pins in your spine? It sounded terrible at best.

Now why was I reading about the surgery? Wasn't it possible she would just need a brace?

I suppose so.  But with Mishayla, I have to know what the worst case scenario is going to be.  I always have prepared myself for the worst. It's the only way I can survive it.

Tony gets very exasperated with me because I do this.  "You make yourself miserable before you even know what is going to happen," he says.

Tony doesn't do the worst case scenario thing.  He does just the opposite.  He does not prepare himself for the worst; he is optimistic that the outcome will be the best one; then if it is worse, he goes from there.

But the truth is, at that doctor's appointment, we were both waiting for that nasty shoe to fall. In spite his optimism, I know my husband was frightened.  He gets this look his eyes, his brow wrinkles, he fidgets endlessly.  Here we are with the damn shoe again.

Mishayla was measured, and x-rayed, and examined by a wonderful doctor, Dr. Jon Lonstein.

It was true that a brace would not correct her problem, which is a deformity in the upper lumbar spine, with a 62 degree curvature. Her shoulder and head are well balanced, which is a good sign.  The only thing that will correct this is surgery, said the doctor.  So I was right to expect the worst.

But.......

She is nearly grown, which is shocking.  She is a mere 4 feet 5 inches tall, and weighs only 70 pounds. Dr. Lonstein claims this is because 1) she was born pre-mature at 33 weeks, and 2) she had a congenital heart defect (actually she had three congenital heart defects).  The fact she is fully grown is good really, because if she is grown, the spinal defect will not move, and she will not need surgery.

We first saw Dr. Lonstein in July, 2011.  She has seen the doctor three times now, and there has been no change.  We see the doctor, and just make an appointment for six months from now.

"Looks good," he'll say.  "Make an appointment for six months from now."

But every time we go, it's the same.  Could this be the time the doctor finally says, like doctors have in the past "it's time for surgery; time to correct this problem," taking us back to that familiar place.  And as we leave, we say the same words.

"Dodged another bullet," Tony will say.

"What a relief," I always say.

Oddly enough, no one knows the origins of "waiting for the shoe to drop." Some contend it is a modern saying, others say it goes back as far as the Middle Ages.

I frankly don't think we need to know the origins of the term.  We've lived it for nearly 13 years.

How do you not live this way? Is there a remedy? I am certainly not the person to ask.  I try and make the best of each day when Mishayla is doing well; savor all the wonderful moments as she grows up, and when I leave the doctor's office, I take a deep breathe, and exhale.  I am grateful for my daughter, that she is here, that we've survived all we have.

Another hurdle crossed.  We don't have to look over the edge of the cliff to see what is down there.

At least not today.

Eating Under the Table and other philosophies

Anybody who has a child with a disability knows it's an very different parenting experience.

With a child without a disability, you are the parent, the leader.  You call the shots.  You want to teach your child the right way to do things, and once you show them what is expected, that is it, they better  tow the line, to use the old cliche.

With a child with a disability, it's the polar opposite.  You cannot expect the child to do something they are just not capable of.  They have limitations, and to try and push beyond them is like trying to cram an elephant into a light socket.  Forget it, folks.  It ain't happening.

So you learn to take the child's lead.  Instead of them following you, you follow them.

I realize some people think this is nuts.  The child calling the shots? What would the parenting experts say about that one? Making concessions for a child? Impossible!!

My husband and I have been the direct, and indirect, recipients of these opinions. 

For example, Mishayla gets easily agitated and nervous in a place where there is a lot of people.  This is common for many children with developmental disabilities.  They just aren't able to process a lot of stimuli at once. 

One place Mishayla would have these "melt-downs" was in restaurants.  She would not eat at the table. The only place she was happy, was underneath it, where she didn't have to see anybody. We tried everything at first to get her to not do this, but she would become so distraught, then we would get upset, and that would be the end of any type of harmonious dining experience. 

So we said, "To hell with it.  Let her do what she wants."

So when we went out, under the table she would go, usually with her iPod.  The waitress would come and want to take our order.  Tony would order, then I would order, then Tony would say, "and she'll have the corn dog with the fries, and a diet Coke."

The waitress would look at us, perplex.  She probably thought he was just an eccentric, maybe feeding his imaginary female friend.  When we would see this confused look, we would point under the table to our daughter, happily listening to her music.  When the food came, we would pass the food and drink down to her, and she would have her own private feast. Sometimes we would pass our food down to her, and she back up to us. 

Some waitresses found this charming, and would laugh and play along.  Others I could see found it pretty bizarre.  Not to mention the looks of some of the other patrons.

It was easier when we had a booth.  But if we had to have a table, that got pretty interesting, because everyone can see what's going on down below, and that there is a little person under the table eating.

I remember one morning we had gone to breakfast at the International House of Pancakes, and we had to take a table in the center of the restaurant.  Of course Mishayla adhered to her usual routine.  Our food came, and as we was eating, I looked up to see this man in a booth directly in front of us.  He was with his wife, and three children around Mishayla's age. 

To put it in the vernacular, he looks at us like we were the scum of the earth.  His eyes said what kind of people would let their child eat on the floor in a public place? 

But I was willing to endure people's derogatory opinions and dirty looks if it's going to make my daughter more comfortable, and that was all there was to it.

And that included my own family.

My own mother could not fathom this parenting philosophy we had embraced.  When Mishayla and I lived with them for 3 months, it drove my mother nearly to madness to see me allowing Mishayla to eat on a snack table in front of the TV, because that was the only place she would eat.  In the house I grew up it, meal time was nearly a religious experience.  It took place only at the table.  These were the hard and fast rules of the universe I was violating. 

"That child is running you when you need to be running her.  You will regret it."

Whatever, I thought.  And the thing is, she now eats at a restaurant just like the rest of us.  What she needed was time.  For a child with developmental disabilities, everything is in slow motion.  What takes most kids a short time, can take someone like Mishayla years.  But it does happen.  It just happens on their own little clock, and if you give them the space to come to where they need to be in their own way.

This has been true with many things with her.  Just this year, at age 12, she began to sleep in her own bed in her own room, lights out.  And she prefers it that way now, after years of sleeping with Tony and I, sleeping on a mattress in the living room; anything to avoid sleeping in her room.  And many kids go through this; but it takes them less time to come to the place they need to be.  It took her several years, but she got there, which is what she always seems to do.

Unconventional? Maybe.  I often think the forces of the universe gave Mishayla to Tony and I because we are unconventional, independent people that aren't easily swayed by the opinion of others.  We are comfortable outside what is expected.  And parenting a child with a disability can often leave you on the outside looking in.

I say embrace it.  Eat under the table.  Sleep on a mattress in the living room.  Learn from a child that has their own internal clock no one can interfere with.

I always say kids like my daughter have more to teach us then we have to teach them.  And I'll always be learning.

A word about the word

In the special needs community, there is always a lot of talk about a certain word. 

That word, of course, is "retard."

It's too bad.  This word has really gotten a bad wrap.  All it really means, if you look it up in the dictionary, is "slow."

re·tard

   /rɪˈtɑrd, for 1–3, 5; ˈritɑrd for 4/ Show Spelled[ri-tahrd, for 1–3, 5; ree-tahrd for 4] Show IPA

verb (used with object)

1.

to make slow; delay the development or progress of (an action, process, etc.); hinder or impede.

verb (used without object)

2.

to be delayed.



And when you think about it, it's not bad to be slow. The trouble is, people starting equating this word in a negative way to people with developmental disabilities.  Like it was bad to be slow, bad to be a person with intellectual challenges.  So the word "retard" got ugly.  People made it that way, directing it at a certain segment of people. 

As a English professor, I admit it, I love words.  And one thing I teach my students is that words evolve.  Have you ever tried  to read the original "The Legend of Sleepy Hollow," written in 1820? I have given it as an assignment to my students, and they freak out!!

"I can't read this!!" they exposulate. 

Well, I tell them, that's not surprising.  Simply because no one talks like that anymore.  And some words we would never use, because as time has gone on, these words have taken on a new meaning, often a negative one.    In "Sleepy Hollow", the narrator talks about someone being "niggardly."

Would you go around calling someone "niggardly?"  Probably not.  Not of course unless you have been in hybernation for the last few hundred years, I don't have to tell you why.  But in 1820, it just wasn't what it is now. 

In truth, the word actually means "stingy and miserly."

This word evolved, and got a bad reputation, just like "retard."  These words are suffering severe discrimination, just like the people who are called them.  What makes these words ugly is the vitriolic, unkind, and ignorant attitudes the person possesses that says the word when addressing a person of color, or a person of intellectual disabilities.

Of course, there are some people that don't mean it as a slight, they just say it kind of as a habit.  It's hard to resist.  It is a good word.  And it's become cool to say it all the time. "Oh, you're such a retard," or "that show is retarded." Now, these comments are not put toward a person with disabilities, they are generally directed toward someone who doesn't have them, or something that has nothing to do with them. 

But think about it.  Would that same person say, "Oh, you're so niggardly, you won't even lend me a dime," or "He is a niggarly man."  Probably not.  When you hear it with you 21st century ears, it sounds offensive.

So unless you are saying something like "we must retard the fire," or "his journey is retarded because of traffic," which you wouldn't say,  the word retard needs to be retired, just like it's brother niggardly.  They deserve the rest, in the dusty pages of Grandma's old "Funk and Wagnel," and our kids, (yes, I mean my kid too) deserve to not be marginalized by this word that people made ugly.

Isn't it amazing how a little word can wound? Can bring so much pain, usually to a person who would not inflict this same pain on another.  Who is a pure and unpolluted soul.  Those of us without an extra 21st chromosome have a lot to learn from people who do.

I don't know whether Mishayla has ever been called a retard by anyone.  She has never said anything to me or her dad about it.  But I have to say it wouldn't surprise me, if somewhere along the line, she has been.  If this word has crossed her ears, I hope she didn't understand it.  Trouble is, she won't always be 12 years old.  She will grow up, and understand this word one day. 

But God willing, if we all make an effort, she never will.  None of our kids will.  Let's make it so little babies born with Down Syndrome today, and other intellectual disabilities, never have to hear this word,  never have to feel, just because of a misguided use of this word, that they are less than the rest of us.

Lady Gaga's Biggest Fan - and her Mommie's

Anybody who knows Mishayla knows she loves Lady Gaga.

She likes other music artists as well, like Adele, and Taylor Swift and Rascal Flats.  But Lady Gaga is her all time favorite. 

She listens to her music for hours, and watches her videos.  She has her posters in her room.  When she is on TV, the excitement on her face is contagious.  It lights up with joy.

Some people have said this is not someone that would be a good role model for any child because of her extreme eccentricity and her propensity to, on more than one occasion, exploit her own sexuality. 

I admit when she got interested in Lady Gaga, I was a bit nervous.  I still check on her when she is on the internet to make sure what she is watching is nothing unsavory.  Of course some would argue that everything about Lady Gaga is unsavory (remember the outfit that was made of beef?)

I was really worried when she wanted a recent issues of Vanity Fair magazine that had a spread of Lady Gaga.  One of the pictures was a nude shot, taken from the side, with singer Tony Bennett painting her (I didn't know Tony Bennett was a painter, pretty cool!!)

I showed it to Tony, wanting to know what he would think.  "You can't see anything, it's just an art piece,"he said. 

So because of Daddy, she got the magazine.  I'm glad, because the pleasure she gets from it gives me almost as much pleasure as it gives her.

Lady Gaga is an amazing entertainer; there can be no doubt of that.  And as for the eccentricity, it's really nothing new; she just does it a lot better than most. 

It makes me think of my own childhood, and the things we used to think were so eccentric.  In the 70s we were ending the hippie era with long haired, screaming rockers that threw their hair everywhere, poured glitter all over their faces and embraced androgyny.  And as far as blatant sexually goes, we had Michael Jackson's provocative dance moves, and of course there is Madonna......say no more about that one.  If you were around in the 1980s, you certainly remember.

And our parents worried and fretted we were embracing inappropriate role models, and we would think our parents weren't "hip" or "cool," and we swore we would never be like that....

Oops......don't look know........but it's evitable; you end up doing what every parents does, that is, wanting to protect your child. 

Yet I also want her to experience the world, and to learn to embrace it.  I think she does do that.  I let her take my laptop in her room, close the door, and explore the internet.  And yes, I check on her, but I'm not hypervigilant about it.  I make sure she is protected from anything harmful, and I leave it at that.  

And while she loves Lady Gaga, what is the thing I find her listening to the most? It's actually a audio file I made for a voice class I took a few years ago.  I had completely forgotten to delete it, and one day, I heard her listening to it. 

"That's you singing, Mommy," she said proudly.  I hear her listening to that as much as Lady Gaga.

So while we parents will never quite reach the heights of a Lady Gaga, we ultimately will be something these artists can never be to our children.

Simply, Mom and Dad.

Mishayla's fashion sense and other discoveries

"Oh, Mooooooommmmmmmmmmmmmmm!!"

Mishayla's response these days to so many things.  Go brush your hair.  Go brush your teeth.  Turn your music down.  Pick up your room.  She reacts pretty much the same way each time.

Most parents would say that reaction when asked to do these things is pretty typical of most 12 year old, 7th graders.

But Mishayla? My sweet little teeny, tiny, premie-baby? Growing up?

Maybe it's because she is so small.  When we go to a restaurant, the hostess still pulls out the kid's menu with the box of crayons and coloring books.  They would never do that for most girls her age.  And she never does color.  Tony enjoys the crayons and coloring more than she does.  She sips her coke and looks at the menu, picking out what she wants to eat.  Just like anybody else.

While it is true she is small in height and weight, if you look closely, she no longer has a little girl's body.  She is growing into a young woman.

This clearly is to be expected.  Children with Down Syndrome become adults just like any other kid.  Yet her growing up surprises me, pleasing me on one hand, and on the other, filling me with a whole host of emotions I didn't expect.

According to Terri Couwenhowen, a psychologist whose expertise is sexuality and children with developmental disabilities, many children with Down Syndrome do not experience the typical drive for independence sometimes until their early twenties, and even later.

But what does that mean, the drive for independence? According to Couwenhowen, this progress begins over time. A child wants to dress themselves, make choices about what they wear, and pursuing their likes and dislikes.

If this is truly a sign of early independence, Mishayla certainly has it.  While she will allow me to choose her clothes for her in the morning before school when she is tired and not at all thrilled about getting ready for school, when she wants to, she does enjoy choosing her own clothes.

This can be hilarious to watch.  She loves summer clothes more than winter clothes.  This would be no problem, other than the fact that during a Minnesota winter, spaghetti strap tops and shorts just don't work all that well.  Because of her propensity for pneumonia, which she did have as an infant, this makes Tony frantic, fearing she will catch cold.  He finally took all her summer things and put them where she couldn't find them.  Luckily, spring is here, so she will be able to enjoy those clothes again very soon.

Sometimes on the weekend, she will change clothes a few times a day.  I will find her room looking like it was hit by a bomb, clothes scattered everywhere.  Sometimes the outfits she puts together don't look good at all, but really, for the most part, they actually do.  She has a pretty good fashion sense.

She comes out of her room, and shows me the outfits.  Her face is filled with pleasure.  She is finding herself, which as a parent, gives me pleasure too.

And she loves shopping.  Loves Target and Walnut, and what 12 year old girl doesn't love Justice? For those of you that don't know, Justice is a store for tweens that has everything from cute fashions to make-up to little trendy toys.

My husband says this is clearly my fault.  I admit it.  It's in the DNA from the women in my family.  I actually wanted a career in fashion at one point.  I've always loved it.  When I was recently planning my trip to see my elderly mother in Nevada, the first thing my mother wanted to do when I got there was go shopping.  So my husband is probably right.

But to me, fashion is a wonderful thing. It's one of the great ways to express who you are, which gives you a strong sense of yourself.   It's part of finding out who you are, which she is doing, and I get to guide her, and watch her grow.  Lucky me!!

She is starting to take an interest in jewelry, and has a few pieces I encourage her to wear.  But she doesn't want to pierce her ears, or wear make-up, although she does look at it in the store.  This pleases her father to no end, I know.  He's just not ready at all for her to be wearing make-up.  Sounds familiar; my father would have a fit as well at that age. And what a battle that was!!  So Mishayla is getting there, just a little slower than most girls her age, and thankfully, a lot slower than her mother did!!

I notice her looking in the mirror at herself sometimes.  She turns her head one way, then another, surveying herself.  It makes me wonder what she is thinking.  I hope she likes what she sees, because I think she is beautiful.  But the important thing is what she thinks of herself.

Another thing she loves to do is cook, which of course presents issues.  Terri Couwenhoven writes that "one of the great dilemmas of parenting a child with a disability is wanting to create opportunities for developing independence without jeopardizing their health and safety." That couldn't be more true than with Mishayla's interest in cooking.  She wants to make pizza rolls, but doesn't understand you can't put two pizza rolls in the microwave for 10 minutes.  And then of course using the stove unsupervised is out of the question right now.

What I try to do is encourage her to help me cook.  She puts the pepperoni and cheese on the pizza.  She shakes the chicken in the bag for Shake and Bake.  She stirs the taco meat.  And of course, because her school is fully included, she is taking a cooking class. 

She may never be able to use a stove or oven completely on her own.  But it's a start.  And who knows?

Parenting any child is a leap of faith.  When a child has a disability, it's even more so.  But isn't that part of the joy? You expect children without disabilities to do certain things.   It's just inevitable.  But when a child has a disability, everything they do is so much more wonderful, like a gift you think you may get, but aren't sure, and when you get it, it's all the more exciting. 

Mishayla is our amazing gift.  She gives to us every day just by being here, and let us watch her grow into herself. 

Work Cited



Couwenhoven, Terri. Teaching Children with Down Syndrome About their Bodies, Boundaries, and Sexuality: A Guide for Parents and Professionals. Woodbine House, 2007.