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