My Family

My Family

Tuesday, August 11, 2015

Fork in the Road

Some people get really excited about changes and a chance to try something new and exciting.  They jump at the chance to get out there and seize that rainbow!!  Reach for the sky!!  Whoohoo!

I am not one of them.

I am the girl who has drank out of the same two coffee mugs for the past million years, I have had the same pillow and pjs for longer than I've been married and I really don't care that the PJs are too big now and the pillow has a gaping hole that most of the stuffing has fallen out of (my husband calls it roadkill).  I have the same morning routine, the same hair style, and even though my laptop is only held together by duct tape and prayers right now and my new laptop is ready to go I'm still typing on the old one praying that I don't set something on fire.  You get the idea.  

So when change occurs I don't always embrace it or get excited.  Usually I resist with every fiber of my mortal being.

When we adopted Cary Lynn I gave up a fantastic job as a teacher.  I missed teaching.  I had a hard time adjusting to being a stay at home mama.  But Cary Lynn took up a lot of time and energy.  In the meantime Marvin started to fall apart too.  He went from loving school to dreading it in the course of his first year.  The next year wasn't much better and after fighting non stop for things to change we pulled him out of public school and started him in private school.

We also had him tested.  We found out he had processing disorders, dysgraphia, ADHD, and other impairments.  He also tested off the charts in some areas.

Confused?  So was I.  I am privileged to be a mama to a child who falls into a category called twice gifted.  It means on one hand he's really smart.  I mean not mama thinks I'm all that and a bag of chips, but actually really smart.  On the other hand he has a lot of learning disabilities.  So many that it's hard to see the smart sometimes.

So when I sent the info to his new school I was assured that there was no problem.  Marvin tried hard but when your curriculum is heavily based on neat handwriting and you have dysgraphia then you have a mix for disaster.  I was also getting pressured to pull him out of his therapies.  It was even alluded to that if I spent more time reading him the bible maybe he would fall in line.  Seriously?

Then I hit my fork.  Marvin's CAT testing results came in and we tried treating his ADHD with medication.  Let's start with the medication.  We tried a mild stimulant.  It made him sick.  We ended up taking him to an after hours treatment place thinking he was having an appendix attack.  Nope, just the meds.  So that was a no go.  Next we tried another kind.  This on made his blood pressure bottom out repeatedly.  My son threw all the chairs in the kitchen and tried to launch himself onto my stove top.  I called my husband and he came home.  We took him to the Dr the next day after I had frantically called the after hours nurse 5 times.  At that point the Dr.said that he was uncomfortable providing Marvin with ANY meds.  I said that was fine since I was uncomfortable with him taking ANY meds!

In between meds I got the CAT scores.  I know you can't base life on test scores.  But my son's scores knocked the breath out of me.  First his vocabulary was on 12th grade level.  His spelling 5th grade. Then I looked at his math, reading comprehension, and the rest.  1st grade levels.  Every last one of them.  And they had passed him to third grade!!!  So I called the school.  Left a message.  I also drug out his work from last year (yes I saved it all!) erased a bunch of random papers and set him down. Guess what he knew? Bubkis.  Nada.  Zilch.  I asked him if he was sure and couldn't he just try??? He told me that he was dumb and it didn't matter.  I told him he was smart and it DID matter.

You see Marvin also has shaken baby syndrome.  Because his bio mom was strung out all the time.  And let's not forget being born meth addicted.  So I sent Marvin outside and had a good cry because the school told me that they "had this".  What did they do with him?  So I gathered my wits and after a talk with the school put the story together.

Marvin is a good kid.  He goes to school.  Smiles and is charming.  He's polite.  The teacher had her hands full with 1st and 2nd graders who did have some behaviors.  Marvin won't ask for help and no, the school is not willing to make accommodations.  They are a small private school and cannot do this.

So there was my fork and at this point you're probably wondering where the heck I'm going with all of this.  I'm getting there, hang on.  We had to decide what to do.  Right now we can't send him back to the private school and we can't send him to public school.  I don't have hours each day to live on the phone, at IEPs and fighting to get my son caught up.

So our family is making a huge transition this year.  Marvin is going to be home schooled.  Yup.  This idea was actually suggested by some public school people.  I can work with Marvin and catch him up.  There is no way he can keep going forward when he is already so far behind.  We need to teach him differently.  He also needs to step up his OT and his other Drs since he is a med lightweight.  So we need to teach him how to handle his ADHD other ways.

Lots of people have said I don't know how you can do that.  But when you no longer have a choice you would be amazed at what you CAN and WILL do for your child.  Not everyone is thrilled about it either, but we have limited resources in this area and I've exhausted them all.  Trust me I looked long and hard at other options before this one.

I will be working hard with him.  I've talked with his support team and we've found curriculum that will challenge him and help catch him up in weak areas.  We are making sure he has plenty of social opportunities with co-ops, and extra curricular activities (he will get more than he did in school. Ask our local moms about silent lunches and recess time being taken away so kids can test).  He will also get the help he needs to manage his needs so he can be in a better place.

I resist change, but sometimes it becomes necessary.  And sometimes that fork in the road really does take you to a better place.  I know we can do this.  Marvin and Cary Lynn are both smart kids who need to do things differently.  And for their sake I'm willing to try.

Sunday, July 5, 2015

The Umbrella Kid

Well they do say when it rains it pours.  In my house umbrellas aren't just for preventing rain from soaking you.  We live under the umbrella of diagnoses in our home.  It's part of the joys of living with a medically complex kiddo.

Cary Lynn is a medical enigma.  She delights in 3 am solos, her stuffed animals, and keeping doctors scratching their heads.

An umbrella diagnosis is where they take a whole bunch of problems, group them all together, and say voila!!  Here you go, take a whack a doodle at that!  I kid you not.  I sometimes think the way they come up with these things involve a dart board, stiff rounds of expensive scotch, and a parker brother's Ouija board.  They sit together, take some shots, consult the position of the stars, and make lots of notes in Latin so it looks like they know what they are talking about.  Then they have meetings, press conferences, and write it down in big medical journals.  Which are passed on to doctors and nurses who present the information to us while they try to look like they perfectly understand what is going on with my child.

Cary Lynn has many, many, many diagnoses.  I kid you not.  Last time her chart was updated she was up to 30.  Some are little and frankly not worth the space they take up on paper.  But some are bigger.

Three of her biggies are umbrella diagnoses.  Cerebral Palsy is considered an umbrella diagnosis.  CP is a large disability category.   For some people in the CP umbrella the only trace of it you see is they hold a pencil a little funny.  On the other end of the umbrella you have children like my daughter who cannot roll, sit, or do a lot independently.

The other one is CVI.  This one is also a big big umbrella.  From children who function so well visually that you would never know to children who are very visually impaired.  Cary Lynn falls right about in the middle of this one.

The last one is a new diagnosis that we just got official confirmation of last week.  Dysautonomia. It's a big word, but once again I'm stuck in umbrella land.  If you look up the definition you will even see in several places that it is defined as an umbrella term where the autonomic nervous system malfunctions.  It can range from mild issues like gi track problems to Parkinson's disease.  I sat down with neurology and had a very long and fun filled round of what type might Cary Lynn have. Because there is a really big difference.  There is the kind that you treat the symptoms and go on slogging or there is progressive.  In the case of the latter it's not a good prognosis.  At this point the medical community is still consulting the dartboard and the Ouija to figure out what category Cary Lynn is in.

I hate being grumpy and disgruntled.  But in a way I really am.  To me an umbrella diagnosis isn't a real diagnosis.  I am the type of person who really wants a clear cut answer.  So I know what to do to fix or at least stabilize the problem.  Instead I get a lot of running around the bush and unhelpful handouts.  And the run of the mill advice like, keep doing therapy.  To me that is the equivalent of patting a small child on the head and sending them off with a lolly pop in hopes that they have pacified the child and made them forget the problem at large.  So it makes me kind of mad that the same old tired things keep getting trotted out.

But the other part of me knows that they really don't know.  Cary Lynn lived.  She defied medical odds at 24 weeks.  She defied medical odds when she first came to live with us.  Every day she lives she defies another odd.  Everything that she does that they told me she would never do.  From the day she grabbed a toy to the day she took simple steps with support she continues to remind me that I dwell with a miracle.  The doctors are by and large clueless about my child and so many other children like her.

So while I'm not overly thrilled that I have to endure another umbrella diagnosis and I'm not going to give up hope that someday we may have better answers than darts and scotch can provide I'm going to take it one day at a time and watch my little odd buster continue to blaze new trails and set the world on fire.

Saturday, June 20, 2015

Happy Father's Day

Once upon a time a girl met a great guy.  They went on a couple of dates.  On about the third date the girl asked the question.   It was an important question, meant to weed out people.  "Hey, I really want to adopt children when I get married.  I was adopted and I'm not too sure I am able to have kids so this is super important to me.  How do you feel about this?"

Talk about a loaded gun.  The girl had asked the question before to other guys.  They beat a trail real quick so she learned to ask it early on before she got too attached.  This guy was different.  Without missing a beat he looked at the girl and said, "I don't have a problem with that at all."  The girl had to make sure her hearing was working.  But it was and she really started to like that guy.  Enough to get married and settle down.

Flash forward a few years.  Her friends and family were popping out kids like rabbits and sure enough she was unable to have kids.  She timidly approached her husband again.  She saw beautiful children in China that needed families.  Her friends had adopted from China.  He quietly said to her, "What about the kids here?  Don't they need families too?"  Those words sealed their destiny.

It wasn't easy.  They went through and were approved to adopt in Florida.  Then they relocated back to Virginia.  And found out that you had to start the process ALL over again.  There were many days that they were both frustrated.  But they kept going.  And on one cold Virginia winter they became parents for the first time to a bright eyed, tow haired little boy.
He was daddy's little man right from the start.  Sure mama was great and all but it was daddy who this little boy tottered after.  He followed him around mimicking all that he did and wanted to be just like him.

Flash forward a few years later.  The couple was told that there was a little girl.  She had a lot of challenges and that no one wanted her.  It would take a very special family to raise her.  The girl was nervous about meeting her.  Not the guy.  He reached right in, scooped her up and said, "That's daddy's little girl."
She was chubby, pink, and nestled right in.  She calls him Dah.  Once again mama takes a back seat. Luckily, she has pretty decent self esteem and a good sense of humor.

The girl has watched this amazing relationship grow between the guy and their children.  She has learned that it doesn't take much to have kids but it takes a lot to raise another guys kids.  Especially when those kids have lots of disabilities.  It takes patience, a sense of humor, and a lot of love.

Like flowers the children are growing and thriving.  The little boy is an active 8 year old who still follows daddy everywhere.
 The little girl still thinks Dah is superman and expects to be treated like royalty at all times by him.
This girl is incredibly happy.  I found an amazing husband, father, and friend.  It hasn't always been an easy journey, but it has been an amazing one.  Happy Father's Day Shannon.

Friday, May 8, 2015

A Letter to My Son

Dear Marvin,

Where did the time fly to?  When you came to our home you gave me a new name.  Mama.  I was so excited to have you come be a part of our family.  After years of wanting a wee one and watching friends and family have children I was finally able to have a little one of my own.
You were so little and you were just what our family needed.  You brought laughter, smiles, and mess.   You made our house a home.

Every day we watched you grow and we loved you more and more.  Even though you had a tough start you never let things stop you or slow you down.

Then the day came when you started asking for a "baby scissor",  Dada and I were talking about another child and we weren't sure what we wanted.  When the social worker asked you you didn't hesitate.  You announced you NEEDED a "baby scissor".  And then you looked at her with those baby blue eyes and she told you that you will get one.

When Cary Lynn came home you were so excited.  You put on the roll of big brother like I put on my crocks.  It was a comfortable easy fit for you.  You became Cary Lynn's champion, number one fan, and the way you love and protect her makes me so proud of you.

You changed, just like we all did when she came home.  You knew instinctively that she requires more time and attention.  You have unselfishly given of your time and pitched in when needed. Sometimes I feel terrible that I can't give you my 100% but you never complain.  You just hug me harder.

Every day you grow and change.  We are so proud of you.  This weekend you will turn 8.  I can't wait to see where this year's journey will take us.

I love you more than words can say.  You are my everything and my all.  I am proud of you.

Your Mama

Friday, May 1, 2015

Finding Her Voice

Imagine you are going out to a restaurant.  You have been working all day and are looking forward to that giant 12 oz steak, baked potato, and monster salad.  You're starving.  You dress up and go out. Then you get to the restaurant and the waiter asks you what you want.  You open your mouth and no sound comes out.  You try again but this time all that comes out is weird sounds.  "Rgumpha".  To you it sounds like steak.  But everyone looks at you funny.

Your companions step in to save the day.  "She wants fish, rice, and soup."  WHAT?!?!?  You clearly wanted steak.  You don't even like fish.  You try again and get louder.  You companions laugh and say "Isn't that cute?  She's really hungry."  By this time you are really ticked off.  You don't LIKE fish.  You start picking up silverware and throwing it, you tip over all the waters at the table and begin to scream and cry.  At this point you are told to be quiet by your companions and they shove bread in your mouth in hopes to appease you.  You have been broken.  Your wants have been ignored.  A part of you is raging and the other part is hurt and confused.

Were you listened to?  Were you validated?  Were you acknowledged as a human with rights?  No you weren't.  Would you like to live this way?  I wouldn't.  I'm glad I can go to a restaurant and order my steak with pride.

But it is estimated that 1 in 100 children have communication issues.  For some it is finding the right words.  For some children, like my daughter, they are classified as totally nonverbal.

When we adopted my son at 18 months he came to us with a rich sign language vocabulary (his foster father was profoundly deaf).  He only had five words.  Within the next year his vocabulary exceeded the average toddler.  We surrounded him with conversation, books, music, and Kipper the Dog (so not my choice but he loved it).  He blossomed.

When Cary Lynn came to live with us I made the assumption that yes, she would be a late talker but surely she would blossom as well.  We did the same things.  But we had such different results. Where Marvin talked within months Cary Lynn was struggling even to make simple sounds.  She understood sooo much but the words just didn't come.  So I tried harder and pushed more.  She was such a smart kid.

But the brain bleed that triggered all my daughter's health issues also robbed her of something very precious.  Her words.  But somehow we still made little inches.  I learned to recognize what her sounds meant.  When she moved a certain way.  She and I could generally work together and get her needs met.

There came a day though that we spent over an hour of tears, tantrums, and the biggest meltdown over what toy she wanted.  Try as she did I couldn't understand what my kid needed.  And it killed me.

We were in Early Intervention and they pushed sign language and words.  I started pushing back. Then we were introduced to our first communication device.  The big mack.

Cue the angels.  I loved it.  We programmed I want that in there and Cary Lynn took off.  She was now able to tell me, well she wanted something.  It was pretty good.  And it worked for about a year.
But several months ago she put the brakes on.  Cary Lynn refused to use the switch.  She would throw it, grumble when it came up, and just balk.  So I started to wonder if it wasn't enough.  After all, only being able to say one thing over and over is rather limiting.  So her therapists suggested two switches.  I was like seriously?  Don't you have anything else?

So I started asking questions.  Doing research.  I am lucky.  I have friends who love alternative communication.  One amazing human presented me with a PODD book

Now by using the big mack (programmed to say that's the one!) we had partner assisted scanning.  It was so neat to see what Cary Lynn could say.  I loved the book.  I still love the book.  It is fun and I was able to spark some new interest in the switch.

So then I got excited.  What else could we do?  I then looked at the IPad.  At this point we only used it for learning games.  What if I added some language.  My rock star communication and tech peeps came through again.  We started with Go Talk Now.
So here is our basic choice page.  Let me couch this by saying I'm not a techie person.  I joked that I married tall and techie.  I did.  My husband not only can reach that top pantry shelf he has patiently guided me through the urban computer landscape.  To do this simple page took me about an hour. Yes, I know.  Ask me about how to complete the mixed media layout on a scrap page, how to make the best chocolate chip pumpkin muffin, or how to bring Celtic elements into your bedroom and I will talk for hours and use lots of great terms.  Give me an IPad and I glaze over and loose all shreds of human kindness and humanity.  In fact if it were not for my awesome blogger friend who guided me through the process you would not even have this blog.

But for my daughter I would slog through anything.  Including technology.  We also invested in PODD for the IPad.

 By using the IPad my daughter now has access to lots of words.  She has a voice.  One she now enjoys using.

It's not perfect.  She still has CP and somedays the movements aren't there even with lots of trying. So I teamed up with UVA (our hospital) and worked with a speech therapist and the Tobii/Dynavox people.  Cary Lynn was able to trial devices.  We found that she really liked a nice communication device.  She was able to demonstrate competence and had a lot to say.

With speech comes freedom.  Freedom to tell her mama to go jump in a lake, refuse to work, and demand endless episodes of Peppa Pig (once again not my choice).  In other words to be three.

Yesterday she melted down.  We had about two weeks of killer back to back appointments.  Next week is also going to be busy.  By pulling out PODD she was able to say that she was sad and tired. A year ago that wouldn't have happened.  I would have just pushed her on.  Today I pulled the plug. No appointments, she is still in pjs and is happily rolling on the floor trying to grab at her balls as they roll around and is squealing with joy.

As I said, this is not perfect.  Because I'm not perfect.  Somedays we never crack a device.  Her CP gets in the way or she isn't interested in trying.  We get busy with other therapies.  Little does she know we are going to be walking in a bit.

But bit by bit our new way of talking is falling into place.  Now a days the experts push for communication devices at 18 months for children who they target with speech delays.  I worried about putting one in her hands because I was afraid it would stop her from "really talking".  But if anything I now hear more noises.  More sound.  More garbled language, but language none the less.

My daughter has found a powerful tool.  She has found her voice.  Someday she will be able to order steak, watch what she wants on tv, and be able to connect with the world around her.  And most important of all be treated like someone who has value and worth.  I have no idea where we will be in another couple of years but I look forward to my daughter being able to tell you all about it.  In her own words with her own voice.

Wednesday, April 29, 2015

It's not in how you fall it's in how you rise

This week has been tough for many of my mama friends.  I just got off the phone with one.  She's so far away from me but always in my heart.  I think often about these women.  They have been such a huge influence in my life.  They have taught me that it's not in how you fall it's in how you rise.

Having one child with special needs is a challenge.  But when we willingly chose to take on number two there were many who questioned my sanity.  Heck, I questioned it at times (alright a lot).  But looking at the face of our soon to be daughter I knew we had made the right choice.

That didn't mean it was easy.  For years I was "that person".  You know the one who knew how to get your kid to nap, eat right, do complex algebra while folding the laundry.  Ahem.

Cary Lynn threw all that right out the window within one week.  After my ego had been properly bruised I realized it was OK not to have all the answers.  I even figured out it was OK not to know all the questions.  Instead I learned.  I still learn.  I read, research, and dig.  Then I dig more.  I listen better and stop assuming that I know everything.  I admit that I am human and am going to mess up. And I have become OK with that.

I was also the person who would never do that.  You know.  The one you talk to in passing about your child's g-tube and they get this weird look like they would rather be transported to Mars and disintegrated on the spot.  "I can't imagine how you can do that?!?  I NEVER would."

Well guess what buttercup?  I wasn't going to either.  But I have.  And I do.  One day it just clicked that this is not the most awful thing that could ever happen and I would not turn into troll by doing it. I know change g-tubes, bolus feed, give enemas like a pro, can tell you super good tricks on how to clean out vomit quickly and still show up to church looking good, and can clean up a dreaded bed feed in about three minutes when necessary.  If it was your child you would learn.  Love is a powerful motivator.

We fall.  We are human.  We will keep falling.  But the important part is that we don't just lay down and die.  We rise.  We stand back up.  Sometimes it's hard to do because we have been trampled and bruised by life.  It hurts.  It takes courage to get back up again.  Lots of it.  Sometimes you need a hand and that's OK.  But the important thing is that you keep on standing.  You are stronger than what life throws at you.  So don't be afraid to rise and try again.  And again.  Because when you rise you show that you are stronger than your circumstances and that you will be the victor over them and not the victim of them.  And while you may never figure out how to do that complex algebra (sorry I stopped advising on that a long time ago) you will find something even better. You will find that you are not only ready to meet hard knocks but able to say with pride that yes you may fall but you also are going to rise again.

Wednesday, April 8, 2015

Fortune's Wheel

Once in awhile I dream this fantastic dream.  It's spring and I'm in the park with my kids.  We are on a grassy hill.  There is sunshine, trees, and butterflies.  I am sitting on a bench talking to an unknown person.  In my dream I know them.  As we talk I watch both kids play.  The part of the dream that takes my breath away is that there are no AFOs. No wheelchairs.  Cary Lynn runs strong and free. There has been no abuse.  Both of my children are healed, happy and whole.

Sometimes when I talk to this stranger I complain about how hard things are.  Then the person asks me, "Do you want your children well."  I grow silent and don't answer.

Then I wake up.  I wake up to doctors, therapies, wheelchairs, ptsd, and those horrible Afos.

The question is simple, but at the same time a loaded gun.  You would think that any sane parent would say "YES!!  I want them well!" But for me it just isn't a black and white question.  It's so many shades of grey.

First of all, I do wish they hadn't been abused, neglected, and suffered.  I get weary of fighting the world around me for services, going to doctors, and instead of medicines, sensory diets, standers, and medical paperwork that has taken over my craft area. I want my days to revolve around stories, cuddles, giggles, Barbies, and trucks.  I want to call my friends up and instead of discussing Cary Lynn's latest medicines and Marvin's latest therapy talk about what I watched on TV, or what I saw the neighbor doing (probably not, we live in the country and have so many trees that if the neighbors were doing something good, I'd never catch it).

But here is the tricky part.  If you spend your whole life yearning for what you don't have you miss what you do have.

If my children were "well" they would never be mine.  They entered into the system because they weren't cared for.  I would have no Marvin or Cary Lynn.  They would belong to another and that alone chokes me up because this house would be so empty and lonely without them.

If my children were "well" I wouldn't have gotten to know the strong community of women who stand by me.  These women are amazing and their kids are amazing too.  Our children have brought out the best in us.

In my life and travels I have talked with many adults with disabilities.  They inspire me.  Sometimes I get brave and ask the question.  About being "normal and well".  Guess what their answer is nine times out of ten?

No.  Yup you heard me.  So then I ask why?  And they look at me like I've grown two heads.  I get responses and this is a compilation of what is said.

"Yes, some days we do want to do what everyone else does.  It would make life easier.  But they learned that they had so much to offer.  That they could push boundaries, fight for equality, and most of all teach us that just because you are disabled doesn't mean that you you don't have things to offer or that the gifts you have are inferior.  That diversity is the spice of life.  And that we all matter. "

Plus, what dawned on me is if I also spend time wishing my kids well I send a silent message that what they are now isn't good enough.  While I firmly believe that we can work harder to be better people, I don't want my kids to feel like they don't measure up.  Because they do.

I say it often and I mean it.  My kids are amazing.  And they have so much to offer the world.  And they matter to the people around them.  And to me.  So even though I'll probably never call with good gossip about the neighbors I will enjoy the two precious lives that I have and celebrate who they are as is.