My Family

My Family

Sunday, June 11, 2017

Shades of Grey

The human brain has 100 billion neurons, each neuron connected to 10 thousand other neurons. Sitting on your shoulders is the most complicated object in the known universe.- Michio Kaku


Tell me about it......   The brain is complex.  Add to it one child who on the surface look deceptively "normal" and you have a recipe for disaster.

"He doesn't have ADHD, all boys act that way"
"He can't have Autism, he's social"
"He doesn't have food allergies, let him eat whatever"
"He'll just outgrow that."
"He doesn't have mental illness."

On and on the advice went and still goes.  For children with hidden disabilities life can be more challenging than a child with an obvious one.  Services are openly showered on my daughter but it is like prying a crocodile's mouth open with food in it to get help for my son.

It started young.  I had lots of worries.  I would watch him like a hawk.  Something wasn't right.  I was assured that he didn't have ADHD.  That another child in the class did but not him.  By a teacher misdiagnosing my child valuable time was wasted in getting services.  That's what happened year after year, time after time.  Concerns were brushed aside.

But I persisted and I insisted.  Guess what, people were wrong.  As time passed testing was done. Now that my son is 10 he finally has the services and team in place that he so desperately needed back when he came home at 18 months old.  They say it's never too late, but in some ways it is.  And if it's not late it's going to be harder to correct things.

It's also hard to know where he fits in.  He "passes" in so many things.  He is able to blend in.  When we go places most praise him for being a good big brother.  He plays with the other kids in a game.

But over the years he's learned how to play the game called life.  He puts on a good show.  The outside world doesn't see what happens.  They don't see the child who melts down after spending a day at a family reunion because he's so overwhelmed.  The teachers don't see him come home from school and look at his spelling notebook and watch him cry because he doesn't understand the instructions (to be fair dad and I didn't get what they wanted him to do either.  When I was growing up we brought home a list and studied it.  You know, when dinosaurs roamed the earth.... Now we had to choose from A la Cart activities?!?!).  Or how we've had to teach him to look at labels in all the foods he picks up so he can avoid making himself sick.

I could keep going, but it makes me mad and a bit sad too.  I've long ago come to the conclusion that it's really hard to budge people who aren't willing to look outside the box.  Who are trapped in their notions.  You can't break through glass with a feather.

But it's worth the fight.  I'm thankful for Children's Home Society.  They were the first people to step in and really hear what I had to say.  The ball started rolling.  I'm thankful to the sharp GI doctor in Norfolk who was looking over my daughter and saw my son double over in pain.  The visit that was supposed to be about her weight rapidly shifted to a little boy who stood with tears in his eye and a Dr. who told me, this isn't normal.  For the UVA team who spent days testing him and came back with answers.  For his psychologist who is on speed dial on my phone.  Who helps me understand how to parent a child who has lived through trauma and who gives our family hope.  For his ABA team.  We have the cool Mr. Gabe who comes and plays with him and slips in activities that force him to think about things a different way.  So we keep on fighting, hoping that we can make it better for other parents who come after us.

I'm mostly thankful for my son.  Without him I probably would have gone through life being one of those people who think inside their happy box.  He takes everything I thought I knew about parenting and shakes it and turns it upside down.  Then he burps.  Because there are some things that fall within the realm of normal boyhood.  I don't quite know what the future holds, but I'm happy I get to be along for the journey.


Wednesday, May 17, 2017

Becoming Barbra

It happened again the other day.  We were out shopping and Cary Lynn was getting some extra attention.

"Oh aren't you just a doll baby?  Wook at how sweets you is."  Meanwhile, the "doll baby" was rolling her eyes.  When asked how old she was I said 5.  I was then told about how God sends precious angels to us all.  When I jokingly quipped that the "precious angel" just bit her brother ten minutes ago I was quickly reassured that Cary Lynn didn't have the sense to come in out of the rain.

I left at that point.

It's hard sometimes.  When the world is presented with children who have multiple disabilities assumptions are made.  Over and over.  Most of them fall into what kids can't do.  Or won't ever do. The bar is set so low I feel like I'm in a round of limbo.

One of the hardest things has been establishing that Cary Lynn is her own person.  That she has her own thoughts, dreams, and way of seeing the world around her.

When we brought her into our home at nine months old many applauded our decision.  We were taking this poor disabled child home with us.  Cue the sainthood music!!

I'm going to tell you a little secret.  We didn't pick Cary Lynn.  She picked us.  At day four of our first of many hospital stays when my world was unravelling bit by bit with every scary new doctor proclamation my child bit her first of many medical professionals.  After the Dr. left I looked at her and said, "You are my kind of people.  I think you'll fit in well with us.  Let's get you well and then you can come home to your family."  This kid had the nerve to look like she was pondering this!!!  I mean hello, I'm not that bad of a human right?   So I tried again, "C'mon, it's not like this is a Paris vacation.  You have a family that wants you so badly.  A mama, daddy, and brother.  And a room full of new toys!"  Well the word toys sealed the deal and I felt like this little human is going to challenge every last thing that I said and did henceforth and forever more.

And she has.  I am constantly kept on my toes with a child who is intent on outwitting me at every turn.  We clash frequently.  Cary Lynn, or Barbra, she renamed herself a couple of years ago at an educational consultation is a girl who knows what she wants.

Treat her like an imbecile she will ignore you or roll her eyes at you.  Tell her that it's time for therapy and you will hear the power of her lungs three blocks down the road.  Offer her ice cream, frosting, lollypops, or any sugar laden treat you are her best friend for life.  Read her stories and watch her eyes light up.  Ask her to use her communication book and watch her try to throw it or look blankly into space.  Engage her and see the fire within.  Teach her something new and watch her process. Bring her to a doctor that treats her like crap she will place a well deserved kick to the shin, a bite, or scream in their face.

She is her own person.  Don't get me wrong, she's also a part of a family unit.  But I can't always speak for her.  Because I'm not Cary Lynn (or Barbra).  I'm mom.  Now I get to call all the big shots like bedtime (which she ignores), healthy oral meal choices (which she spits in my face and then crowns for sugar), educational television (which she will nap in front of until the tv is magically changed to Peppa Pig), and her therapy schedule(which she takes off her diaper and pees everywhere).  So at this point we really see who's in charge around here.......

My daughter is amazing.  She's smart, loves to laugh, enjoys violent fairy tales, Peppa Pig, Peg and Cat, her doll Cynthia Arvella, and has her own way of doing things.  She keeps me on my toes and I can honestly say every day is an adventure around here.  Someday maybe the world will see the same thing that I see. They'll look past the disability and see the ability.  They see a whole new person. They'll see Barbra.

Tuesday, May 2, 2017

Celebrating Mother's Day

Well, I did it again.  I vow I won't every year but somehow my newsfeed finds the most depressing articles on Mother's Day and having children with special needs.

Before you start yelling, hear me out.  I KNOW every day is not a rosy ray of sunshine with unicorns dancing in the meadows.   I had to fight my almost ten year old to get out of bed and go on a fun field trip today (I'm so mean, I know).  He wanted to stay at home and cuddle.  I felt like a heel.  I also has to listen to my five year old wail all the way home because the John Denver CD bit the dust and she couldn't listen to Thank God I'm a Country Boy in a loop.  Then I had the nerve to put her in her gait trainer before our appointment and insist she have some physical activity before she's stuck in the car. If you count eat shattering screaming as proper lung development, we are all set.  So I know and I sympathize.

But there are so many amazing things.  Things that would never have happened had two children with medical conditions had not have shown up and tipped my world topsy turvey.  Here are five positive things that I've learned along this wild ride.

1. There are some amazing and strong women out there.  

Don't know any, look in the mirror mama.  You are strong and I admire you.  I know that you shed tears and worry that you are messing up.  I'm going to let you in on a secret.  We ALL worry about that.  I don't care if you have a child with or without disabilities.  Parenting is hard.  You are doing a killer job of it even if you don't think you are.

2.  Every day is a new chance.  

Even though we aren't promised tomorrow, sometimes it really helps to look forward to it if today has gone in the tank.  Lost your child's John Denver CD?   Tomorrow will be better because I can spend tonight burning a new copy!!  You messed up and questioned your ability to parent a Chia Pet, let alone this little human with so many extra needs?  Breathe, and see point number 1.

3.  A Village has my back.  

In the age we live on a few clicks connect me to people that I may have never met 15 or so years ago. Sometimes it's hard with appointments and Drs. to find time, but it's worth it.  Whether you have a village of two or two hundred it's important to find people who will love and care about you and your family.  My village knows my faults and flaws and embraces me for who I am, not what I wish I was.
4.  We become. 

In this journey we are often stretched to our limits and breaking points.  Yet we don't back down.  We become advocates. Because when you hold that little one you give up what you want and fight with every breath for what they need.  It's not easy but we become stronger and more determined to find cures, get testing done, locate the best care possible.  We become what our children need.

5.  Our kids are here for a reason and a purpose. 

I don't believe that there is some great cosmic zap and randomness occurs.  There is a purpose and a reason, even if we don't understand why.  Each person has a destiny to fulfill.  Even though they may have limitations and there is a reality my kids have a purpose that they were uniquely designed for and only they can do.  So does your child.

These are just a few reasons to celebrate being a mom.  There are so many out there.  Happy Mother's Day to some amazing moms who are advocating, standing strong, and above all loving their kids and seeing the amazing potential that they possess.

Thursday, March 16, 2017

We are the Warriors


You see us everywhere you go.  We may be in the shadows or in the limelight.  We may be loud or quiet with deafening silence.

We are forged out of endless battles with doctors, therapists, insurance, schools, paperwork, research, and advocacy.  Everyday we gear up to fight new battles and rise to new challenges.  Our minds are sharp, our hearts are strong, and our knowledge is a force to be reckoned with.  We put on our armor of strength daily.

We gather on battlefields ready to fight for the thing that means the most to us, our children.  We sit in hospitals holding their hand tight and fighting for their lives.  We go to therapies and press everyone to take one more inch.  We can't afford to loose, the cost is too high.

To the world we may seem brave, but we aren't always.  For every victory we have miles of defeat behind us.  But we are driven to try just one more time.  We may be scared to death, but we rise up and do it anyway.  We don't have a choice.  Failure is not a word we embrace.

Our children have multiple needs and because of them we have changed.  We have taken on roles that are new to us.  We have stepped out from the sidelines and walked onto enemy territory.  Because of them, we dare to do things outside of our comfort zone.  We push harder and battle on.

We are the Warriors.  We are the storm.  We will battle and we will win.  




Friday, February 24, 2017

Finding Their Own Beat

If a man does not keep pace with his companions, perhaps it is because he hears a different drummer. Let him step to the music which he hears, however measured or far away.  -Henry David Thoreau

We all dream big dreams for our kids.  I'm no exception.  When you sit and gaze lovingly over your child's cradle, watch them play, and dream about what amazing things they are going to do.  Your son picks up a bandaid and you see a doctor.  Your daughter draws that first picture and you see the next O'Keeffe.

What happens when your dreams crash with reality?   What happens when your dreams don't match up with your kid's life?

This is what my struggle has been these couple of weeks.  Trying to find new rhythms in our life song.  It's been hard for me.  I don't like watching the kids struggle. I don't like seeing them fail.

When your son says that he can't keep his homework straight and the words swim and the tears fall. When your daughter can't go to the super awesome program that you've been on the waiting list for two years for because her body isn't strong enough.

I hear the words of Marvin's doctor in my mind, "It must be so frustrating.  He's smart but the doors are locked in certain areas of his mind and the key is always three steps beyond his grasp."  Cary Lynn's dev ped pretty much says the same thing every visit, "Her mind is there and it's trapped in a body that refuses to let it be free."

I've gotten used to letting things go, it's just a fact of life.  But it doesn't make it sting less.  My kids will always struggle more than most kids will.  But they have their own paths to follow, not my path. My path would take away the challenges and obstacles that they need to equip them.  To make them strong.  They need a chance to travel their paths, not mine.  Their paths will teach them strength, grace, humor, and courage.

They won't be easy paths, life never is.  But they won't have to travel alone.  I'll be right there with them.  Stepping to their music and finding their unique songs.

Friday, February 10, 2017

Twice Gifted

It's a term that makes me cringe.  One that I hear quite a lot when it comes to Marvin.  Twice gifted. The more common term is twice exceptional.  It means intellectually gifted children who have some form or forms of disability. These children are considered exceptional both because of their intellectual gifts and because of their special needs.

This week I sat down at UVA with a neuropsychologist.  Marvin has spent several days testing at her office and I was ready for the results.  What was supposed to be a 30 minute follow up expanded into 90 minutes and she ended up being late for a meeting.  But there was just no way to condense the results into a short and sweet package.

She started off with what she calls the "good news".  Marvin has a normal IQ.  He also tested average or in several cases above average in the learning department.  She (and Marvin) credit homeschooling and his reestablished love of learning.  The Dr. says he is super smart and tries really hard.  That was good to hear.

But she stated, for every strength there were strong deficits.  She went on to explain how brains are supposed to work and areas that are supposed to do certain things.  She went on to explain how three events reshaped Marvin's brain and in some cases destroyed vital connections that are essential.

Marvin was exposed to Meth in utero.  He was born addicted.  Strike one.  Then he he was shaken resulting in Shaken Baby Syndrome and seizure activities.  Strike two.  Then he was placed in foster care and had trauma and stress of non permanent situations until he came to live with us.  The longer you stay the more trauma.  Strike three.

What does it mean for Marvin?  Well it simply means that even though he's smart his brain sustained a ridiculous amount of damage.  Unrepairable damage.  That part hurts.  I can't fix it.  For years we have tried to "fix" Marvin.  Having a Dr. tell you you can't make it better cuts to your very soul.  I'm a fixer.  That's what moms do.  But sometimes you just can't and you have to learn to go forward with what you have.

Marvin will have to learn adaptation skills.  We will have to teach him how to work with what he's got.  Marvin has already subconsciously learned some skills.  He will have to have stuff broken down into manageable pieces.  We also will have to have more therapeutic and medical intervention. Marvin gets caught in loops and can be inflexible.  He then has triggers and emotional meltdowns. Intensive therapy will help teach Marvin coping skills.  Additional OT will help with fine motor adaptations.  Marvin may also require in home therapy.

The Dr. found that Marvin is struggling at school.  Yes, he is back in school.  He wanted to try.  We love where he is and it has a special place in my heart.  The Dr. has a large list of modifications that will need to happen there as well.  We spent a good amount of time talking about how great alternative schools are (she grew up Waldorf) for kids like Marvin.  But she also advocated for homeschool and said she believed that Marvin learns best one on one.

When I left I felt totally overwhelmed and sad.  And angry.  I don't think it's fair that he's had to have gone through so much.  When the Dr. tells you that your child will always be harder to parent than the average child and lots of people won't understand how complex his needs are it's a huge punch in the gut.  I went home and had a good long cry.  Then I binged on chocolate and chick flicks.

Right now Shannon and I are wading through it all.  Here's what I know.  Marvin is still Marvin.  Just because we know more now doesn't change who he is.  It does help me be a better advocate for him. He's an amazing kid who lived through a lot of crap and came out scarred and battered but still victorious.   He won a huge battle by thriving.  Most kids who go through what he went through aren't as lucky.  He has a family who has his back and loves him unconditionally and will advocate for him fiercely.  Just because he had a rocky start doesn't mean he will have a rocky finish.  We will continue to stand strong together and we will overcome.

Monday, February 6, 2017

Feeding Tube Awareness 2017

During this week in February we take time to bring awareness to the fact that are multiple ways of being fed.  My daughter will be coming up on her third year Tube-iversay in a few weeks as well. The decision to place a tube in my child not only gave her the ability to grow and thrive, but also gave her something so much more.  It gave her freedom from pressure and a chance to make her own choices about how she eats.  Let me take you back and share our journey. 

When she first came home at nine months old Cary Lynn was bottle fed.  Sure she was a little slower and needed to eat more often but she enjoyed her bottles.  I loved watching her smack her lips and grunt as she slurped.  

Then we ended up in the hospital.  She was pretty sick.  While we were there I met my first feeding therapist.  She immediately didn't like the bottle I was using.  Said it was too hard for Cary Lynn and took too long.  She found us new bottles.  Therapeutic bottles.  O.K. that wasn't horrible.  Cary Lynn adjusted and soon ate with her new bottles.  Then we met with a new G.I. who complained she was too small.  

"Are you ready for a G-Tube and Nissen?"   Ummmm no, she eats.  He wasn't thrilled but said O.K. you need to go to nutrition and feeding clinic.  So I took her, therapeutic bottles and all and we went to feeding clinic.  Because that was what the Drs. said and frankly I was worried about her.  We had only had her home for a little while and we seemed to be making frequent pilgrimages to the hospital. We also had a tube that went from her nose down to her stomach (an NG tube).  She kept pulling it out and chewing it up.  Gross.    

So we went and the people who assessed us were nice.  Cary Lynn ate and threw up everything on the nurse.  Up till that point there was a waiting list.  After she barfed everywhere they had a magic space open up.  We started next week.  

I was so excited!  She was going to eat!  I was going to put some chunk on her!!!  Yay!!  I tried to get Cary Lynn excited too.  I told her about how much fun it would be.  There would be bubbles, stuffed animals and she would eat.  She just grunted and went back to her bottle.  

When we started the first thing they did was tell me the bottle had to go.  I protested, saying that she loved it.  They gave me a bottle that hair dressers use to put coloring in with food safe tubing.  It looked like a hamster bottle.  I told them that.  They didn't like it much.  

They showed me how to squirt it in her mouth.  Cary Lynn didn't like it.  She whimpered for her bottle.  We managed.  Then we went home and I fed her bottles. 

Next week she did better.  I rejoiced, went home and threw her bottles away.  That night after four hours of crying I dug one out that I hid just in case.  I told the therapists that she wasn't ready.  They said she could and I was being difficult.  So they kept working with her.  She finally took the hamster bottle.  We were finally able to throw away her bottles.  

All during that time her weight see sawed.  It was up and down.  There was a lot of pressure for a tube but she was still eating.  Every Dr. only talked about the tube.  But she ate.  And she was happy eating.  

Then feeding clinic wanted to start on food.  They showed me how to make purees that had more calories.  It was fun.  I learned quickly.  Cary Lynn didn't get the memo.  She balked.  Some days were good days.  We had to have lots of meals.  She had to eat about eight times a day.  She also started refusing.  

Our feeding program is behavior based.  Eat a bite get TV.  Eat a bite get bubbles.  Or music or a sticker.  The problem was and is Cary Lynn has visual impairments.  So that stuff didn't mean a lot to her.  She started to wave her hands in front of her face and put them over her mouth.  The feeding therapist took her and tied her arms down.  That didn't go over well with me or Cary Lynn.  

After I threatened to call CPS she was untied.  Cary Lynn kept her arms down but every bite of food was spit out into the therapist's face.  Cary Lynn was shaking violently and turing purple.  We went home early.  

The next week we were getting ready to go back.  I was telling Cary Lynn where we were going when I heard her make a noise.  I leaned over to look at her.  Her lips were shaking, her eyes were wide with fear.  Her body trembled uncontrollably.  My kid was scared.  

Eating was no longer a fun thing for her.  She had begun to dread it.  Every meal was a nightmare. The therapy that was supposed to help her robbed her instead.  I had hoped for so long that some magical cosmic event there would get her to eat.  In following what I wanted I wrecked what should have been a beautiful and organic experience. We called out.  

The next day I went to her G.I. doctor and told him we were ready for a tube.  Three weeks later she had a tube.  After she had a tube we were "discharged" from feeding clinic because she "never had to eat again orally".  Frankly, I will never take her back there again.  What they did was wrong and I would be wrong to allow it to happen again.  

Now my daughter eats with a g-tube.  As much as I fought it that tube is one of the best things I've ever done.  She's growing and gaining.  She also has started eating orally again.  Because she WANTS to, not because she HAS to.  Her G-Tube has given her freedom in that department and she can approach food on her own terms.  We don't stress anymore.  Cary Lynn's happiness over discovering frosting, chocolate, and bean burritos all over again have made waiting for her to be ready all worth it.  The G-Tube has allowed us that privilege.  And for that we are grateful.  Happy Feeding Tube Awareness week!