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.

A Special Needs Child's Best Advocate

Lately, I've been reading and hearing a lot about difficulties with our kids and the education system.

This is not a new thing.  Parents and advocates struggle every day to get children with special needs the education that they deserve under the law of this country.

The law most pertinent for our kids is a law called the Individuals with Disabilities Education Act.  This law governs how special education services are administered to our kids.   It addresses the educational needs of children with disabilities from birth to age 18 or 21 in cases that involve 14 specified categories of disability. 

The IDEA is "spending clause" legislation, meaning that it only applies to those States and their local educational agencies that accept federal funding under the IDEA. While States declining such funding are not subject to the IDEA, all States have accepted funding under this statute and are subject to it.

This is important to remember, because services varying from state to state, and school district to school district.  Nonetheless, all districts that take this money from the state, and therefore, the federal government, and are subject to these laws. For instance, Mishayla attended, while we were living in Nevada, a wonderful program in a school district in the Carson Valley, just south of Carson City.  But I was told by teachers that in the city of Carson itself, and the city of Reno, schools were stressed for resources and not as good.  So it can be just a few miles that make a difference to what kind of an education a special needs child can receive. 

When Mishayla was going to school in California, money was the issue.  No money for this, no money for that.  Now, we all know that California school districts are taxed to the limit because of overcrowding.  Recently, an article was published stating California is only 47th out of 50 states when it comes to how much is spent per child in the classroom.  Such a  rich state, and such crappy special needs programs, at least in Southern California (can't speak for the rest of the state).

But as a parent, I felt this was no excuse.  The state takes IDEA money from the government.  Why isn't it using it for special needs kids?

Also, this particular school district, Westside Union School District in Palmdale, California, where Mishayla attended school from pre-school to 4th grade, along with most districts in Southern California, including Los Angeles Unified School District, does not practice any type of inclusion.  Special needs children are sequestered away from the general population of students.  Again, I was told this was for fiscal reasons.  When a special needs child goes into a situation where they are in a regular classroom environment, they must have a aide with them.  The district said it could not afford all these aides, I was told, therefore, the children are put in one classroom to save on resources.

They refused to get an aide for Mishayla so she could attend part of her day in a regular classroom, in spite of the fact her teachers constantly recommended she could flourish in this kind of an environment.

I'm sure most of you have heard the term "less restrictive environment" pertaining to children with disabilities.
Here's how it's worded in IDEA:

The U.S. Dept. Education, 2005a regulations implementing IDEA states: "...to the maximum extent appropriate, children with disabilities including children in public or private institutions or care facilities, are educated with children who are nondisabled; and special classes, separate schooling or other removal of children with disabilities from regular educational environment occurs only if the nature or severity of the disability is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily."

Knowing the law as I did, I reminded officials at Westside Union District they were violation of this section of the law. 

I kept on them.  Finally, when Mishayla was in second grade, they agreed to put her in a regular second grade classroom at her home school. There would be an aide with her in the classroom at all times.

What they neglected to tell us was that this one aide only worked part of the day, and that the aide was not just dealing with Mishayla, and maybe a few other children, but that she was dealing with an entire class of children that had behavioral disorders and other problems. 

This made it impossible for Mishayla to get the attention she needed, and for her to succeed in this environment.  At the age of seven, she was still struggling with toilet training, and needed to be encouraged to use the bathroom on a regular basis.  So one afternoon, when I went to pick her up, I found her crying in the corner with wet pants.  The teacher had basically left her there, because the aide was gone, and she just didn't have time to take her to the restroom.

Tony and I feel that this was a bad case of sabotage by Westside Union School District.  They had no intention of giving our daughter what she needed to succeed.  They cared nothing for our daughter, and the only concern they had was their bottom line.

I took Mishayla out of that room, and never sent her back.  We were torn.  Do we not send her to school at all? Do we send her back to an environment with just other special needs children?

At the time, the best thing for her was just to get her back in school, so she returned to an exclusively special needs class.  There just were not any other options, and we felt keeping out of school was not good for her.
Also, unlike schools in other places, including Minnesota, you cannot move your child to another district. The law states the child must attend school in the district where they live. And what would have been the point? They were all the same anyway in most of Southern California.

We contemplated hiring an attorney, but I was a graduate student at the time and not working full time, and our resources were limited.  And would it really make a difference?  We had already had advocates try and fight for us to no avail.

Please understand I do not wish to marginalize the work of the wonderful special education teachers at Westside Union School District. Mishayla had several that were wonderful, caring individuals.  But they were just as frustrated with the system as my husband and I, and because of this, they didn't stay working for very long.  In Mishayla's third grade year, she had at least 4 teachers.   This was also a cause for concern, since special needs kids need continuity in order to do well.  We parents complained again, to dead ears.

As things turned out, we ended up leaving California due to my husband's employment.  California is my home, and I admit, I still miss it.

But there was one gem in all the coal: the schools in Minnesota are much better, and believe wholeheartedly in inclusion.  Mishayla has had wonderful experiences here, and has made friends with all kinds of kids.  She has learned, and I think children in the regular classroom environment have learned from her.  She is thriving.

Mishayla with other 5th graders at a end of school ice cream party, 2010

It can be very hard to fight these school districts.  They are very powerful, and as you can see, we were not successful in getting what we wanted, and what the law dictated. 

But that isn't a reason to give up.

What do you do if you are in a situation like this? What would I have done differently if Mishayla had remained in California?

I would say there are power in numbers.  I would have talked to other parents.  Maybe in large numbers, we could have changed something in that district.  Find out what their concerns are, and advocate in groups.

Also, at the time all this was going on with Mishayla, the internet was not being used as it is now.  It is a marvelous tool for advocacy of all kinds.  Get online, and bring your voices together.  It has been proven that when this happens, people listen.

Know the law, and know your rights.  School districts bank on parents not knowing their rights, so educate yourself. 

If it gets to the point where you need help, hire an advocate.  Most states have agencies that can help, such as here in Minnesota, we have the Minnesota Disabilities Law Center.  These people can also educate you about what you need to know!!

Another thing I would suggest doesn't appeal to a lot of people, and they say, in many instances,  it's impossible.  But you may just need to move.  Investigate the school districts, and find one that will meet  your child's need.  It may be worth it. 

You are your child's best advocate.  No one knows your child, and what they need, like you do.  You know what they need best.  They are worth fighting for!!

Keep fighting!!!!

Mishayla at Twins Game, 2011

Happy World Down Syndrome Day and Mishayla's Light

Today, March 21, is World Down Syndrome Day!!  Today, people with Down Syndrome will be recognized at the United Nations, and other places around the world.

So in recognition, I would like to react to a blog post I was reading.  Amy Becker, is the mother of six year old Penny, who has Down Syndrome.  Ms. Becker discusses her own perceptions about Down Syndrome before the birth of her daughter, and how her perceptions changed when Penny was born.

She beautifully renders the first time she saw Penny in the blog.  She discusses what she knew about what people with Down Syndrome look like, and what Penny looked like to her.

She didn't look a thing like a baby that has Down Syndrome is supposed to look like.

What are some of the physical characteristics of Down Syndrome anyway?  Here are a few:

Flat Nose
Thick Neck
Epicathal Folds of the skin around the eyes
Short stature
Cherubic expression.

This is just to name a few supposed characteristics.  Prior to Mishayla's birth, I never knew any of this.  And like Amy Becker, my husband and I were told by the doctors that she probably had Down Syndrome, even though it was not officially confirmed until a chromosome report was completed a week later at UCLA Medical Center. 

But I do remember vividly the first time I saw her.  Since she had been immediately diagnosed after birth with esophageal atresia, and was being transferred out of the hospital where I had her, as well as being premature, she was in an incubator in the NICU unit.  My husband and I, and my son Jared, who was 10 years old at the time, were allowed in to see her before the helicopter came to medivac her to UCLA.

I recall seeing this baby that looked like an angel.  Her skin was ivory white, like porcelain, and her hair looked blond. I remember marveling at this, having a child that was so light featured, because my features, and my husband's, are dark.  And for some reason, I remember a light.  I have no recollection of where this light was coming from. I don't think it would have been inside the incubator, or shining into it either.  But I remember her face being illuminated. 

That is what she looked like to me.  Angelic perfection.  Like Amy Becker, I didn't see any Down Syndrome at all.  All I saw was this miracle of new life.

To this day, when I look at Mishayla, I don't see any of those "characteristics" either.  I see this beautiful girl, slowly emerging into a young woman, long shining dark hair, and striking hazel eyes that are full of joy and pleasure whenever she smiles. 

In other words, it is her essence that I see.  And I know others see it too.  Most of her teachers have told me that "Mishayla is a happy kid." Mishayla still has that light around her that I saw the first time I ever looked at her.  To those that know her and love her, she always will have that light; it is her own gift to the world.

It is my hope as she grows, and goes out into the world, that light, and that essence, is what the world sees from my daughter.  Down Syndrome? Not significant at all!!

So Happy World Down Syndrome Day to Mishayla, to Penny, and to all people with Down Syndrome and their families.  We are truly blessed.

A Mother's Magical Time Machine

Don't we all wish, at some point in our lives, we could turn back time and change things?

So many authors have written about it.  Movies have been made by the gizillions.  It is the ultimate pervasive human fantasy.

I sort of had this fantasy after Mishayla was born.  It was not so much that I wanted to change the fact I had a child with a disability, but I wanted to have what I call the perfect birth experience everyone of my friends and family seemed to have been able to accomplish with at least one of their children.  Most of you that have had babies know the drill; the perfect painless pregnancy, baby is born when it is supposed to be (no premies), labor goes well and is productive, and out comes this perfect, healthy, screaming, human being that is placed on your belly and immediately takes to the breast with no problem.  It's eyes open, and looks into yours with love and with trust.

I had none of these with either child.  When I got pregnant with Mishayla, I looked at this pregnancy as my chance to "turn back to clock" and do this right, since Jared was born premature and sickly, spending nearly two weeks in a NICU.

But you, my readers, know the story.  Mishayla's birth, and my pregnancy with her, were worse than with Jared.  It was inconceivable to me.

Dammit!! I wanted to stomp my foot and throw a tantrum like a two year old!! I'm a pretty determined person.  When I want something, I get it, pure and simple.  I don't let much get in my way. I was determined to get this pregnancy/birth thing right.  How could I achieve this?

Only one way; try again to have another child.

And this was my plan.  I wanted to try one more time.  Tony was fine with it; he said whatever I wanted to do was fine.

Oddly enough, I was not terribly worried about having another baby with Down Syndrome.  I had looked that beast in square in the face, and I could handle it.  Besides, it was a 50-50 thing with the Down Syndrome.  I could still accomplish my dream of giving birth to a healthy baby, even if the baby ended up having it.  Many children with Down Syndrome are born completely healthy.

For some reason, the prematurity issue never occurred to me as I was basking in my realm of magical thinking.  Then one day, just before Mishayla was to be released from the hospital, I had a conversation with a nurse who was caring for her in the NICU.

I got to know a lot of nurses during Mishayla's six week stay in the hospital.  You just automatically gravitate toward these wonderful people who care so diligently for your child.  And anyone that has had to hang around a hospital knows, it can get really boring and lonely.  So you seek conversation and companionship, and these NICU nurses, with a few rare exceptions, can provide the empathy you seek.

But on this day, I didn't get empathy; I got a reality check.  I no longer recall the name of this nurse; but the conversation I had with her was life altering.

When I told her I planned to get pregnant again when Mishayla was doing better, she just looked at me.

"How old are you?" she asked.

"I'm 39," I replied. "Should that matter?" I asked. "Women have healthy babies well into their 40s, right?"

She didn't answer me. "And didn't you say your son came early? How early was he?"

"Thirty-five weeks," I answered.

"And so," she said. "You're 39,and you will be over 40 by the time you get pregnant again.  You have a child with Down Syndrome, and you have had two premies."

I started to feel like I was being interrogated. "Yes," I said, "that's right."

"You know," she said. "Women that have a history of prematurity tend to keep having babies earlier and earlier.   You said your son was born at 35 weeks, and Mishayla at 33.  It is very possible that the next child you have will be born even earlier.  You were aware of that, right?"

Well, no I was not.

"And you are aware of the risks of prematurity?" she asked. "Things like cerebral palsy?"

I would become aware of all these things once I went to work months later as a disabilities advocate. But at the time of this conversation I was not aware.

I felt shocked.  And sad.  Now, this nurse never said "don't get pregnant again." But she did want me to be aware of the facts.  She said she just wanted me to make an informed decision.

Maybe I should have said to hell with her, I know what I'm doing.  But I didn't.

I started to feel like I was being childish and selfish.  I had a healthy son, in spite of his difficult start in life, and Mishayla would probably be fine too.  I had two beautiful children.  Did I really want to watch another one of my children go through surgeries, and breathing problems? Did I want to stay in bed for months on end, with agonizing pain, feeling like if I moved the wrong way I would lose the baby.

I could not control the magical time machine.  I could not correct or change the events that transpired concerning the birth of my children, and more than likely, any future children I may have.

So I decided it was time to close up the old baby factory for good.  One of the toughest decision I ever had to make. I would have no more children.

My beautitful, miraculous children, Easter, 2000

It is always a pivotal moment in a women's life when she realizes, either by choice or by force, that she will not bring anymore children into this world.  Of course, there are some women that never want children, and don't care.  But in my opinion I think most of us do.  It is a physical and emotion need we women are just naturally wired to have.  I remember, in my 20s before having Jared, all my friends were having babies, and I would go see them in the hospital, and I would just feel this craving to have a baby.  It is like nothing I've ever experience before or since. it was completely consuming; overpowering. I've witnessed other women go through the same thing.   And even know, as a middle-aged women who no longer even has a monthly cycle, when I see a pregnant women, I am just slightly envious.  There is truly nothing more miraculous than bringing a life into the world. And we women are so lucky we can do it.  I feel very lucky I was able to bring two wonderful children, my dear Jared and Mishayla Rose, into this world.

So there will always be a little tiny piece of me that will feel a little cheated.  But that's okay.  I am truly blessed, and I know it and can acknowledge that.

Ultimately, I think I made the right decision, not only for myself, but for my family.  Tony and I have been able to focus completely on Mishayla, and through our efforts and attention, she has done well in spite of her disability.

And with my son's pending wedding next year, I have the hope of future grandchildren, which I look forward to with great anticipation.

Life goes on.  Who needs a time machine?

The bad mix of Down Syndrome and Milestones

Most parents have heard the term "milestones" in reference to their children.  Basically, it means a child is supposed to be doing certain things, such as walking, talking, going to the toilet, etc, by a certain time.

And for the most part, kids do fit the paradigm pretty well, with a few variations here and there.  They generally are walking by about 15 months, they can say about 10 words at 18 months, and the average child is potty trained by 38 months, i.e., about 3 years old.

But when you have a special needs child, forget it.

Milestones don't work at all.  Trouble is, the world of pediatrics still tries to apply these average milestones to kids that can never fit into them.

For instance, they are obsessed with those height and weight charts.  If your child doesn't weigh the prescribed amount on the chart by a certain time, something is terribly wrong with either the child, or worse, your parenting is in serious question.

When Mishayla was five months old, she only weighed 7 pounds.  Now, remember, this child had a heart defect, that at the time, had not been corrected, was recovering from multiple surgeries, and was premature. She was still using her feeding tube for the majority of her feedings.

Yet she was expected to meet the milestones on that damnable chart.  When I took her to see the surgeon who had done her bowel surgeries for a check up at five months, the doctor came in, took one look at Mishayla, and in an accusatory tone, asked me "Are you feeding this child?"

I tried to explain that I was giving her a normal amount of feedings; about half was by mouth, the other half was through the feeding tube.  He interrogated me further; what kind of formula was I giving her, etc.

Finally I'd had enough.  I asked him "I don't understand.  Are you accusing me of starving my child?"

His answer was basically yes.  "This child is not growing," he said, in his mightier than thou, pompous tone. "She can't possibly be getting enough calories if she weighs only seven pounds at this age. Something has to be done immediately."

He stormed out.  I felt like I had been hit in the head with a two by four.  Starving my child? All I did was feed her.  I spent the entire day trying to get her to eat.  Then I began to fear this "something has to be done" stuff. Was he going to take my daughter away from me? Very scary!!

A dietician was sent in to discuss how I could get more calories into Mishayla.  I was taught how to mix her formula, putting a certain amount of extra scoops into the water to give her more food.  From then on, I would pour about 8-12 scoops into a plastic container, and fill it half way with water.

Once I implemented this, she did begin to gain some weight.  But only some, and very slowly.

And she still  has never gained much weight.  Even now, at age 12, she is only about 60 pounds, and those of you that have seen her eat, know she can probably eat more than the average football player.
And only recently, while visiting her new orthopedist, did I find out way.

According to her doctor, Dr. John Lonstein at Gillette Children's Hospital in St. Paul, Minnesota, children that are born with congenital heart defects and are premature are very often small throughout their life, and never grow to be very large.  She is, at 12 years and 7 months old, 4 feet 4 1/2 inches tall, and about 65 pounds.

And according to Dr. Lonstein, she is more than likely at 95 percent of her growth.  So why did that doctor at UCLA insist that it was such an abomination for her to be so small, and accuse us of not feeding her?

Yes, that's it!!  The milestones!! They have to meet those milestones!! Doing this with a special needs child, especially a child with Down Syndrome, is like trying to cram a square peg in a round hole. It's not going to happen.

After this very painful incident,at UCLA, I did some research.  I discovered that there are actually special height and weight charts made up for children that have Down Syndrome. You'd think doctors would know about these things, right? No brainer?

Wrong!!

One of the first times I took Mishayla to see a pediatrician as an infant, he pulled out the old growth chart.

"Well," he said, "she's not even on here."

I pulled out one of the charts that said "For Girls with Down Syndrome, Age 0-2" across the top.  "This is the chart you need to use for her," I said. "She may not ever be on that one."

And of course I was right.  She is even small on the Down Syndrome chart.  But at least it's somewhere in the right ballpark.

I got so every time I took her to a doctor, and trust me, there were many doctors, I'd put one of those charts in my purse.  Doctors did not have them most of the time. 

It seems exasperating for parents to have to educate the medical profession about our kids.  I mean, aren't they the doctors? I certainly don't have the MD.

I personally think they should get rid of those charts for all kids.  Everybody is different, no child is the same. There is always some measuring device to tell us who we are supposed to be. 

We should all be able to create our own milestones!!! Mishayla certainly has!!!

Mishayla, age 10

Hey, take a picture, it lasts longer!!"

Remember that old saying?  As a kid, God forbid if someone as much as looked at you for a second, this would be the immediate reaction.

The saying has renewed meaning when you have a child with a disability. 

I have tried to fathom why this is.  Sometimes, when I am in a giving kind of mood, I would tell myself, hey, people are curious.  They wonder what children such as Mishayla are like.   They don't stare out of meanness, and only have benevolent feelings toward my daughter.

Some of it is who is doing the staring.  Usually if it's kids, I think that is the case.  Children do have a natural curiosity about their world.  It's like the stories you hear often about children meeting a person of color, or other minority for the first time, they wonder solely about why this person is different from them. 

With adults, I'm a little more suspecious. I really feel they should probably know better.  They are not inexperienced with the world (or at least they shouldn't be, and my patience with them is a bit less.)

One incident of inpolite staring at my daughter actually involved her extremely protective grandfather.  My father, now in his 80s, knew nothing, and had never been exposed to, children with disabilities.  But when Mishayla was born, both my parents were loving and supportive.  When Mishayla and I lived with my parents for a few months during a time our family was deciding where to relocated after Tony's job loss,  my father became even more attached to his granddaughter. 

He was becoming a "mama bear."  Or I supposed in his case, a "grandpa bear."



"Grampa Bear," my dad



Sitting in a restaurant with my parents one Sunday morning, I noticed my dad kept looking across the table at the booth next to us. 

I asked him what he was looking at. "That guy over there keeps looking at Mishayla," said my dad. "I don't know what his problem is."

I just told him to blow it off.  "People do that all the time, Dad," I said. "Doesn't really mean anything.  Who knows? Maybe he has a kid with Down Syndrome himself."

"I don't care," he replied. "It's rude, and I don't like it."

Our meal continued.  Dad kept looking at the guy, munching on his toast.  When it was time to go, we were all sliding out of the booth.  I didn't look toward the table, just walking away.

From behind me, I hear this my father's voice. "What is you're problem?"

Oh, God, I'm thinking; what is getting himself into?

Then I hear him again "Take a picture, why don't ya? It'll lasts longer!!!"

With that, Dad followed us out of the restaurant.   When he caught up with us, he said. "I had just had it with him staring. Why was he staring at her like that? I just don't understand people at all."

Confronting people along these lines can be dangerous, but sometimes, it can get pretty aggravating to just tolerate it in silence. 

Maybe it would be better if people just come up to you and say what is on their mind.  For the most part, this hardly ever occurs. 

It happened to me, once.  I was in a public library, and Mishayla was maybe a year old.  I was carrying her with me on a weekday afternoon, just needing to get out of the house for a while and do something that didn't cost a lot of money.  For me, that place is the library. 

Out of nowhere, this woman comes up to me.  Compliments me on my lovely child.  Wants to know how old she is.  I felt comfortable enough to relay some details.  Seemed like a nice enough person.  Very empathetic and all.

She looks at me pensively, suddenly handing me a pamphlet.

It was from the Jehovah's witnesses.  "You know, children like her really need Jesus."

Sigh.  So that was where the interest was. Everybody's got their own agenda. 

Think I'll go back to the staring without the comments.  With that, I can just walk away!!!

The Mama Bear in the Special Needs Mom

WARNING: THIS BLOG CARRIES SOME OBSCENE LANGUAGE!!!
 
This was on my Facebook wall a few days ago, posted by Cyndi Wise Massey, who also has a child with Down Syndrome.
 
REASONS YOU SHOULD THINK TWICE BEFORE MESSING WITH SPECIAL NEEDS MOM: (I just had to share it)

1. Some of us have given up on social skills and don't care what we say or do.
2. We're not afraid to have a serious "meltdown" of our own.
3. We are tired and all the patience we have is for our kids.
4. We have a far shorter fuse for nonsense as a result of our responsibilities but A FAR thicker skin.
5. We can get you in a hold/lockdown position in less than 3.5 secs.
6.We can shoot you a look that would make a linebacker tremble in his boots.
7.Chances are it's been awhile since we've had a full night of sleep and that will give us a reason to plead insanity.
8. Our tolerance and patience is for our kids who didn't choose to have special needs, not for someone who CHOOSES to behave inappropriately and is ABLE to control their actions.
9. We're probably already on edge and it would be stupid to push us over.
10. We are sleep deprived and already defensive, and we spend all of our patience on our children, doctors, therapists, social workers and teachers, why would we waste an ounce of it on a total stranger?
11. We've had to fight from the moment of our child's birth so by the time you piss us off we're seasoned battlers and could win a war.
12.We devote our lives to our children and don't need more stress and people who don't understand our life.
13. Wherever there is a cub, there is a mama bear...We're always watching.

While I got a real chuckle out of this, I admit, it does ring true, and I see myself in it, like so many other moms (and dads) of special needs kids.

I've fought with doctors, nurses, teachers, administrators, insurance companies, and weird and rude people of all varieties.

Here are just a few highlights of Mishayla's mom, the mama bear, in action:

THE NURSE THAT INSISTED GUN SHOT VICTIMS WERE MORE IMPORTANT THAN MISHAYLA

1. Mishayla's g-tube fell out and the gastrostomy hole itself was exposed.  We were told by her gastroenterologist that the opening could not be left empty for more than a few hours, or the whole could close by itself.  If this were to happen, Mishayla would have to go through another surgery to reopen it, because at that time, she was not eating fully by mouth yet.

So one night when the tube came out, and we couldn't get it back in, we were forced to take Mishayla to the emergency at a local Southern California hospital near our home.  It was a Saturday night, and the ER was filled with car wrecks and gun shot victims, all of these people, we were told, had priority over our infant daughter.

They put us in a room, and we sat and sat.  No doctor, no nurse, there we sat for an hour.  All this time I'm feeling more frantic.  I could feel the panic rising in me.  If the hole closes, she will go through another surgery.  Just as I was nearly having a panic attack, a nurse walked in.

Talk about being at the wrong place at the wrong time.

"Where is the doctor?" I said.  "This gastrostomy could close up.  We need someone in here now."

She looked at me apologetically. "Well, as you can see, we are very busy tonight.  We have a gun shot victim next door the doctors are working on.....

She never got to finish.  "Frankly, I don't give a flying fuck who got shot" I said, "Get a goddamn doctor in here right now."

She sheepishly backed away. "I'll see what I can do."

Nothing happened again for about another 15 minutes.  That was it.  If I had to make this happen, I would do it.

I ran out of the room, leaving my daughter with my husband.  I ran upstairs to the NICU, where I knew the neonatologist, who knew Mishayla, was working.

I found Dr. Kumar.  Frantically, I explained the situation.

He grabbed a new tube, and followed me down to the ER.  There he inserted the tube, and we were done in a few minutes, no thanks to any of the worthless ER staff who didn't think my daughter was important.

Sometimes, ya just gotta make things happen for your child on your own.

2.  THE INSURANCE COMPANY REP WHO TRIED TO TELL ME THE SPECIAL FORMULA FOR MISHAYLA WAS NOT COVERED BECAUSE IT WAS NOT NECESSARY.

Mishayla's first baby formula was something called Pregestimil.  This was a special, pre-digested formula to help aid in Mishayla processing her food easier because of the esophageal and bowel surgeries.

As I mentioned in a previous blog, the formula was very expensive.  Over 50 bucks a can to be exact. So since you had to have a prescription to obtain it, I figured the insurance company would pay for at least some of it.

WRONG!!

So I got on the phone to Blue Cross to have a chat with them.  I was told that they could not pay for the formula because, well, for one thing, it was not medicinal, it was food.

"Yes," I said, "but it's the only food she can eat at the moment.  Not to mention it's a prescription. Now, as far as I know, prescriptions are medicine."

She was very curt with me.  "Does the insurance company pay for your vitamins?"

I'm thinking: what the hell does that have to do with this conversation, but okay, I"ll play along.

"No, I said," but me taking vitamins is not absolutely necessary for my survival.  This formula for my daughter is."

She continued with her bombastic attitude.  "Why don't you just ask the doctor to put her on something else that you can afford."

I felt myself getting hot, my stomach starting to twist.  I was done.  "I don't think we have anything more to say to each other," I said.  "Give me a supervisor."

In a moment, a supervisor came on the line.  This was what I told her.

"I suggest the next time your staff dispenses medical advise, and tries to tell me my daughter doesn't need what her doctors tell me she needs, that she have an M.D. credential to back up their mouth, otherwise, she needs to shut the hell up about what she doesn't know anything about."

Then I explained, again, that this was the only formula Mishayla could eat.  That it was not a supplement, as this lackey had suggested, that it was a prescription medication because her stomach was surgically altered.

"I'll see what I can do," said the supervisor.

Needless to say, I got the formula paid for.  It wasn't the first fight for Mishayla, or the last.

3. THE NURSE THAT INSISTED TONY AND I WERE TOO STUPID TO UNDERSTAND OUR DAUGHTER'S MEDICAL CHART.

As we were waiting for Mishayla to go in for heart surgery, her chart was sitting on the table.  Bored, and I admit, curious, I started to poke through it.

A nurse came in and grabbed in away from me.  "We don't allow parents to look at those," she said.

I was offended, but I tried to blow it off. "I was just curious," I said, kind of trying to make a joke of it."

"Well," she said. "We discourage parents from looking at their children's charts.  There is so much there that parents just don't have the capacity to understand."

Now I was mad. "Let me explain something to you," I said as patiently as I could. "I know every procedure, every surgery, every anomaly my daughter has intimately.  I live with it every minute. So there is nothing in that chart that is going to be a surprise to me, let alone something I'm not going to understand. And frankly, the insinuation that I would not understand it is downright insulting."

She wasn't expecting that. 

Luckily, for her and for me, Mishayla's wonderful cardiologist Burton Fink entered at that moment.  "Anything wrong?" he asked.

"I was just telling Mrs. Moore that we don't encourage parents looking at the charts....

He stopped her.  "Oh," he said. "They're fine. They do know everything about their child.  They're great parents!!!

It's great to have someone on your side once in a while.  But I can hold my own when I don't.

I'm sure all of us special needs parents have stories like these.  It goes with the territory.  We have a great love, and a great passion for our kids, and to get them what they deserve and need.

Would love to hear any of your "war" stories.  Share them with me here!!!

The Grief that Evolved into Light

As I stated in another blog, the first person I ever met that had a child with Down Syndrome told me "it's a grief that never really goes away."

On hearing this, I remember I found it hard to associate "grief" with a living human being.  Wasn't grief something you did when someone died? It seemed weird to me you could experience grief about other things.

But what is grief really? It is, to me, in a nutshell, about reconciliation of loss.  It's about getting acclimated to someone or something that is gone, and moving on.

According to my friend, when having a child with a disability, that "moving on" wasn't possible. 

Let me tell you first hand: my friend was wrong.

My grieving process started while Mishayla was still at UCLA. As I said before, after about six weeks of running from the high desert down to Los Angeles, which is a 100 miles per day trip, I was exhausted.  Since I could call the NICU 24 hours a day, at the urging of my worried husband, I started to go down to UCLA only 3 times during the work week.  Tony went down with me on the weekend, so at least I was there most of the week.  But I could no longer go everyday. 

So on those days I was home, I was alone.  With Tony at work, and Jared at school, I had time on my hands.  I had an old antique oak desk at the time, and it faced the wall.  I would sit there, and I would contemplate.  It became my grieving place.

It would be more accurate to say, that I tried to get my mind around what had occurred, and what the ramifications of it would be.  Sometimes nothing tangible, or useful, would even come into my head. I was so overwhelmed by it all I just sat there.  I felt like I couldn't move.

I got to thinking one day; what did I really know about Down Syndrome? It was 1999; a few years before the internet really took off, so in order to get information, I would need to get a book.  I went to the local Barnes and Noble, and browsed the limited titles that were available.  I found one book called "A Parent's Guide to Down Syndrome: Toward a Brighter Future by Sigfried Puschel.  I would later learn that Puschel was one of the leading experts in Down Syndrome.

I bought the book, not even opening it till I got home.  At my desk, I opened the book.  What I read made me sick with fear.  I had no idea in the world children with Down Syndrome could have so many problems.  Everything from the stuff Mishayla had, like bowel and heart anomalies, to trouble hearing and deafness, eye problems, joint and bone problems, spinal abnormalities, and eating problems.  This was on top of having cognitive difficulties. 

So even with everything that was happening with Mishayla, there was a great potential for more problems.  All kinds of problems, problems that were not minor, that would need treatments and surgeries.  I felt as though the future looked pretty bleak.  I was filled with a sense of hopelessness.

All parents want to leave a legacy for their children.  They want their children to take something from them, and have it when they are gone, something that is a big part of that parent's humanity, a symbol of their times and existence on earth.

For me, that was my books.  In this room, with my desk, I was surrounded by case after case of books.  Jane Austen, Mark Twain, Charles Dickens, Nathaniel Hawthorne.  Some were bound in leather; really good stuff.  I had been accruing this collection for nearly 20 years, and they felt like a part of me. They represented something I loved, and a dream I had. I had gotten halfway through an English degree in the mid 1980s before Jared was born, and I still had that dream of achieving that goal someday. 

So I felt they were a symbol of me, of something I felt was important.  And I wanted that part of me to survive.  For my kids to, maybe not love it the way I did, but to at least have an appreciation of something I had a profound passion for. 

And I had given birth to a child that would be lucky if she could ever read anything at all.

I felt it was like a cruel joke.  God was up there laughing at me.  You vain little fool.  Nobody will care about you when you are gone; nobody will remember, especially your disabled child, if she even lives that long enough to see you grow old.

At the time, in my troubled mind, I didn't even think that while Jared was not one to read these books, he would probably one day have his own children, my grandchildren.  Or I could pass the books onto friends.  Or I could donate them. The fact that Mishayla couldn't read them was not the end of the world.

But it felt that way, that day, that moment.  And that is grief. 

A process had begun, of letting go of old dreams, and making new ones.  And it hurt like hell.

As time went on, I continued to have these little moments every now and then; these moments that would rush at me, leaving me shocked and breathless, and filling me with a crippling, profound sadness.

Another one occurred after a performance.  I had a been active in a local choir that performed a few times a year. In this particular year, four of us, including the choir director, were performing a quartet.  It had taken me weeks to get my part down; the harmony was abstract and difficult for me.  I was actually scared I would get out there and choke, but once I hit the stage, it was like magic; everything fell into place, the harmonies were perfect.  The song went off without a hitch.

I had loved music as far back as I can remember, and I always wanted to sing.  Very few things give me more pleasure.  I first sang in front of an audience at the age of 12, and it was an exhilarating experience.  I was hooked.

I was in choirs all through junior high and high school, singing in groups and as a soloist.  I had gotten away from it for a while, and had returned to it just before I got pregnant. 

Anyway, after our quartet was done, I was just sitting backstage, watching another soloist perform.  One such soloist was a 13 year old girl, with long golden hair.  She walked up to the microphone, opened her mouth, and began to sing "Somewhere Over the Rainbow." For her age she was extremely poised; her lovely soprano floated over the stage. 

As I was sitting there, enjoying this, recalling my self singing at that age,  it suddenly occurred to me. 

My daughter would never be able to do this, would never be able to enjoy performing or singing, or any of those things.

I felt the tears fill my eyes, the lump in my throat was strangling.  I got up, and ran out of the stage door into the green room, sobbing.

When I got there, the theatre house manager was there, who was also a good friend,  Of course, with the state I was in, she wanted to know what was wrong.  When I told her, she just looked at me.

"Cyndee, you don't have any idea what Mishayla will or won't do at this point.  Whose to say she won't ever sing? You just don't know what will happen."

Of course my friend was absolutely right.  But in the grips of that grief, you sort of lose prospective. 

And as the years have unfolded, I have indeed learned that, just  like any child, what a child with a disability can do is limitless.

There is no doubt Mishayla inherited my love of music.  At her age, I would sit with the headset on, playing James Taylor and Carole King and Chicago and Elton John for hours (yes, I grew up in the 70s!!) Now she has her MacBook and loves Lady Gaga, Kelly Clarkson, Rascal Flats, and Carrie Underwood.  Not to mention Adele!! She is as glued to her music as I was.

And a few months ago, she performed with the 7th grade choir.  She was shy, telling her father "Dad, I don't think I can do this," but once she got with her friends, she was fine.  She didn't sing a note, but she stood with the other young women in her class, and was surrounded by the music she loves. 

She will probably never be a soloist.  But she still is able to enjoy music.  And the truth is, she is not me. She would not have been me, even without the disability.  Our children have their own path to cut through in their lives. 

Mishayla, of course, does read.  And she enjoys books.  I read to her extensively, and her teachers say that it shows.  She may not read Faulkner, but then, a lot of people are glad they never have to read Faulkner.  As long as she is reading something that gives her pleasure and challenges her mind, what does it truly matter?

Many times, parents with children with disabilities put their expectations lower than they should be.  Mishayla has surprised us time and time again with her abilities, far beyond any of our expectations. 

And that is the key.  You need to throw away the expectations.  Don't make them too low, or too high. Take one day at a time. And just see what happens, making the adjustments that are best for your child, who is truly unique beyond measure.

I think this can also be true when it comes to medical diagnosis.  It is fine, and truly, essential, to know about your child's diagnosis.  But I wouldn't borrow trouble.  If your child doesn't have ear or eye problems, there is no need to believe, just because of the T21, that they will get these problems.  Focus on what is important, that is, what your child actually has.  And again, take things slow.  It's very easy to get overwhelmed.

I am pleased to admit that don't have those moments anymore.  And yes, they do go away.  They grow into something much deeper, much more endearing.  They are filled with hope, and with light.  The light my daughter gives me has made my life rich and blessed, and a better human being than I ever would have been without her!! She is truly my greatest gift!!

Mishayla fishing at Forest Lake, 2011