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