Light it up BLUE

Today is Autism Awareness day... so LIGHT it up BLUE.  

I failed.

I forgot, in the rush of getting kids out the door I didn't put any Blue on.  I didn't post on Facebook or Instagram.  

Being me, I have been thinking about why I forgot.  We have a child with a diagnosis of Autism Spectrum Disorder.  How can I just forget?  CP Awareness Day..  Another fail.  We just are not a family that is great about fundraising and selling our story to raise awareness.  The reason...  I think is guilt.

I feel so personally responsible for my children.  

When Julianne experiences a meltdown or can't handle a family meal I feel like a failure.  She still struggles with the bathroom and knowing which shoe goes on which foot.  It must have been something that I did or did not do as a parent.  Words from unknowing adults like "she just needs more discipline, or she would be fine if she were an only child" ring in my ears.  It makes shredding the cloak of parental guilt arduous.  

Our experience with Claudia is different but similar.  I find myself thinking if only I had been a little older before I had the girls.  Maybe if I had quit working sooner, or had not been working so hard.  Then the here and now gets you too.  Our house is not accessible enough, she doesn't have enough therapy, her school is not good enough, we don't have her involved in enough extracurricular activities..and on and on.  

Having two kids with significant special needs is a huge blow.  No matter what cute nuance you tell yourself to get by.. the reality is this.  As a parent with children who have special needs you are faced with extra doctor appointments, uncovered medical expenses, hours on the phone being a medical case manager, IFSP meetings that turn into IEP meetings, daily personal care, daily medical management, advocating for your children's legal rights, and just plain trying to keep it all together to have some semblance of a family.  Is it always fun?   ..absolutely not.

So excuse me, when some days I don't feel like celebrating or spreading awareness because I'm just hanging on.

 

"Medically Necessary"

I have been brewing over our recent situation with Claudia's wheelchair.  Claudia turned 14 this month so she has been using her current wheelchair since the age of 9, sitting in it for close to 15 hours a day.  That is close to 27,375 hours of sitting in that chair.  She has become a woman in that time.  Her body has undergo tremendous changes.  One of which was a back straightening spinal fusion that happened last summer.

It is no wonder that her wheelchair is quite literally falling apart.   She has outgrown it.

A new wheelchair was agreed to be necessary by all her doctors and therapists last summer as it was obvious her new shape would no longer fit into her old wheelchair.  So LAST summer we began what we hoped would be a quick process to acquire a new wheelchair for Claudia.

It is probably no surprise to you have we are still without a new wheelchair... TEN months after we started the process.  The process involves a multiple wheelchair assessments, trial appointments with a sample wheelchair and a therapist writing an extensive letter of medical necessity.   That was all done by August, but it still had to go through a medical vendor that handles the claim, processes the insurance and orders the equipment.  They did not process the claim until October.

Then came a denial, and then another denial and then another..

Until we are now faced with going to a Fair Court Hearing in May.  Can I just say that no one wants to have to NEED a wheelchair!  No one wants to have to fight the system for a year to get a wheelchair.  This is completely ridiculous.

I refuse to give up.

Claudia needs to have her medical needs supported in the best way that they can. It makes me very sad to see that she is starting to lean over.  I'm extremely worried about what is happening with the hardware inside her body.  This year without the proper support it has been difficult for her to sit up and heal.

The denials deem that the wheelchair is not medically necessary....

"Medically necessary" means a covered service is provided by a physician or other licensed practitioner of the healing arts within the scope of practice under state law to prevent disease, disability, or other adverse health conditions or their progression, or to prolong life.

Big accomplishments

 Completing a science fair project is a big deal for anyone.  It involves research, organization, commitment, planning, trial and error, and decent writing skills to pull it all together enough to explain your ideas.

Not the easiest of tasks to do.  

So when Julianne came home excited about the science fair at school that was 

OPTIONAL 

Matt and I exchanged looks.  

Thankfully Grandma Jane happened to be visiting 

and Julianne was smart enough to ask her to help 

with her biggest and bluest eyes.  

Julianne struggles with reading, writing, and especially math.  

Learning does not come easy for her.  She has spent the past three summers in intense tutoring learning to read and spends much of her school day in the resource room.  

So it was a nice surprise that she was excited about the science fair.   Julianne and Grandma got straight to work and worked diligently together.  

That hard work paid off with a first place win!!  

Julianne was so tickled and embarrassed to win that she wouldn't leave my side to go on stage but we know how proud she is of the work she did.  

The ribbon is hanging proudly on her wall.

Vincent had his last soccer game of the season today.  

It has been interesting to watch the progress that the team has made.  They lost more games than they won this season.  

Vincent has done lots of growing and maturing right along with his team.  I love this photo because I'm not even sure exactly where his feet are and where his head is, he's part of the team.  

That has not always been an easy lesson for him to learn but one that I'm grateful he is learning.  

Help..

During an IEP (Individual Education Plan) meeting for Julianne, a educational model for asking, receiving and refusing "help" was brought to our attention.  The behaviorist specialist was making a point that it is not as easy as it sounds to know when to ask, receive help, and when and how to refuse help.
This brings me to the crossroads where we are now.  Claudia has been accepted for a service dog with Canine Assistants in Georgia.  We are thrilled and excited and counting down the days!
Claudia is expected to contribute some money for her travel expenses, hotel expenses and start-up dog expenses.  We are fortunate enough to be able to pay this amount.  Many others have been fundraising and advocating for kids and adults like Claudia already to keep the expenses as low as possible for each recipient.
However it costs some $22,000 to train each and every service dog, and there are over 2000 people on the waiting list at Canine Assistants alone.  So we feel very blessed and lucky for Claudia to have a dog waiting for her in November.
Claudia is a generous person who really has her head and heart in the right place.  Her perseverance, courage, and bravery inspire us every day.  We want so dearly, as her parents, to see her be independent and successful.  She wants to donate to Canine Assistants in order to help cover the training expenses and help get other people waiting a dog.
Claudia has thoughts of having lemonade stands and wants to sell bracelets.  We hope to get organized enough to make some dog biscuits to sell as well.  All that said, $22,000 is still a lofty goal.

If you would like to donate, go directly to Canine Assistants by following this link:

http://www.canineassistants.org/cgi-bin/donate

Please know that a note of support for Claudia is just as appreciated as a donation.  We are grateful for the support.  It's not easy asking but is absolutely amazing to know that people care.

Hope

Today is an IEP day.  

There will be ten people at the meeting.  

All of which I hope have my daughter's best interest at heart.  

These days feel long.

I will take two steps back and evaluate the whole picture.  

I will resist the urge to hold and protect her.  

We want what is best for her to be successful.  

We want her to be a success!

We have glimmers of hope, glimmers that she will rise above!  

Enough?

How we spent our Saturday night...
Claudia and Eloise we fortunate enough to be invited by a very sweet friend to a birthday party Saturday night.  It was a marathon of a birthday party... first swimming, then pizza, then ice skating, then cake, then a movie, followed hopefully by some slumbering, followed by pancakes in the morning and finally home.
Both of the girls were interested in going, and like most typical 10 year-olds had some worries.  Eloise was worried that she wouldn't fall asleep and be grouchy the next day.  Claudia, at first, was silent but you could see her wheels turning.  Who will help me go to the bathroom, who will help change my clothes, who will get me into and out of the pool, how will I get my wheelchair into the house, how will I ice skate, I won't be able to sleep well, I'm allergic to their dog, and so on.
Matt and I have always been encouraging Claudia to attend birthday parties and behind closed doors we negotiate the logistics.  We debate who will be Claudia's legs in the bounce house with twenty kids for the ten time that year.  And please don't misunderstand, we want more than anything for Claudia to be included and to have some friends.  I also don't want to paint an unrealistic picture.
So this Saturday, Matt drove Claudia and Eloise over to the friend's house.  He carried our personal ramp over to their door to allow for Claudia's wheelchair to enter.  He helped her get into the pool with all of her floatation devices.  He helped her get out of the pool and change into winter wear for ice skating.  During the pizza feast he gave her a straw and helped her reach the food she wanted.  He drove Claudia in our wheelchair accessible van to the ice skating rink.  Matt unloaded Claudia and her walker.
I met up with Matt and the girls by the rink to help get skates fitted.  Vincent and Julianne were excited to try skating too.  I adjusted Claudia's walker higher to accommodate for the blades on Claudia's feet.  I donned some skates too.  It was my turn.
Claudia and I entered the rink with about 80 other skaters of varying abilities many of whom were also using "walkers".  I helped support Claudia's trunk while steering the walker and avoiding the 80 other skaters.  At times Claudia's knees would buckle and I would need to help her straighten those too.  We went around and around the rink fast enough to feel the cool breeze in our hair.  (a novel concept for many native Arizonians)  I had a good time and I sure hope Claudia did too.
Matt and I would do just about anything to help Claudia experience a full life.  It hurts when we see her on the sidelines.  It hurts her too.  This year we have noticed more and more that Claudia seems content to sit out or that keeping up is just too much work.  On some level I understand that feeling too...   especially when I see her face while she is holding on with everything she has just to keep herself upright on those blades.

Will she?

Claudia was in the NICU for about seven weeks, long weeks of emotional ups and downs.  We celebrated every little step along the way.  The first goal was to get the girls off CPAP and then off the little sniff of oxygen to breathing on their own.  Next they worked on feeding.  The girls were in the NICU but they were both progressing so well.

The elephant in the closet was how their brains might have been affected...  Both of the girls had some bleeding, which at 29 weeks and 2 days is expected.  But what would that bleeding do?  We waited and waited through multiple head ultrasounds and all were pretty typical until Claudia's last one.

During that last head ultrasound through the little soft spot on Claudia's head the doctors saw signs of permanent damage.
The report said that she had damage in the periventricular area of her brain.  Even though we knew this was a possibility, we had a relatively smooth NICU stay.  We were so hopeful that Claudia and Eloise would manage to get through to be healthy babies.  We were exhausted and that was the news that pricked the balloon flat.

When Matt phoned me with the news my heart sank.  We were so worried, worried about all the unknowns and sad for all of the could have beens.

Together we slowly digested the news.  We whispered our fears to one another and carried on as best we could.  Matt was still on-call every third night and I was a walking breast-pumping zombie.

The doctors took their time approaching us.  Matt had read the results before anyone on the team talked to us.  We knew it was coming but wanted to hear a their professional opinion.  Honestly it is a bit of a blur now, but I remember Dr. Reber telling us she thought that Claudia would have cerebral palsy.  Knowing there was no exact way of telling at this point, she guessed that Claudia would have a mild case and that most likely would walk with a walker and be a pretty normal kid.

Matt and I have never been too hung up on the hows or whys of this happening.  Sure we ask sometimes but it's a fleeting thought.
We know that we really hit the jackpot because we got an amazing kid, not just pretty normal.

When I think back to that time I remember how important it was for us to know if she would ever walk.  Walking seemed like the ruler by which to measure developmental success.
Now I know that walking while important, is not everything!

My Claudia is learning to play the CELLO.  The doctors never told me she would do that!!  She is amazing and I love her so much just the way she is.  She has taught us more about perseverance, tolerance, and understanding of others than any book or life experience.  She is full of happy surprises that make two parents very proud.

Traveling with wheels

We are darn lucky to be able to take Claudia anywhere.. I mean that.  Everything about special is expensive.  Power wheelchairs are expensive, as is the time and effort it takes to maintain them.  I also realize that we are very fortunate to have a van that allows us to physically transport Claudia in her power wheelchair.
We have found that in America there are very few places that could provide adequate public transportation for our family.  A family of six that includes a power wheelchair.
Which brings me to traveling back to the Midwest to visit family.  This summer we limited ourselves to air travel because of the distance and time involved.  Again I want to state that we are very fortunate to be able to afford the cost of travel with a family of six.  This was always one of the biggest negatives to living in the Southwest.  We would have to fly back to visit both of our families in the Midwest.
So just to explain what is involved and how we manage because I know there are many families that feel trapped and paralyzed with a child who has extra physical needs.  Personally that is one of the worst feelings.
Our first move is to pick a direct flight.  We do this for several reasons, one less chance for Claudia's wheelchair to be damaged in the loading and unloading, second it cuts down on wait time.  Claudia's chair is almost always the last piece off the plane so a lay-over would need to accommodate that extra time.
We also prefer to fly with airlines that don't assign the seating because it is a challenge for most airlines to seat us together.  Sitting together is necessary for us for the bathroom moments when one parent can cover the bathroom and there is still another parent close by for the rest of the kids.  If they don't book our tickets together over the phone we usually show up and there is a big scramble because the airline staff realize that it is safer for everyone for us to sit all together.  (we like Southwest)
We arrive to the airport about two and a half hours early.  We do this because we have to check in at the counter in order for the wheelchair to be inspected and because we need some dissemble time at the gate.  We take off anything that is likely to be damaged... joystick, armrest, footrest, seat cushion, etc.  It helps us to carry an empty bag along to store all the parts.
Without running over any older ladies we try to load as close to first as possible.  One of us carries Claudia and the other person carries bags and corrals the kids.  Claudia is pushed (her power having been disconnected at this point) as close as possible to the plane door.  With a couple ounces of luck no one gets motion-sick and we arrive at our destination.
At this point Claudia is small enough that we can carry her off the plane and into a seat while we wait for her chair to be delivered plane side.  I imagine some day one of us will wait on the plane with her while the other person brings her wheelchair back down the runway.  Thankfully the other children have learned to listen and be patient during this process.  We pick up our luggage and proceed.
Due to the fore-mentioned lack of public transportation we rent a wheelchair accessible van at our destination.  We have tossed around the idea of doing a taxi to the location but it comes down to the fact that we need to be able to transport Claudia once on-site.
Thank goodness there are companies that rent out wheelchair accessible vans.  So far we have tried Omaha, Indianapolis, and Fort Myers with good success.  If you need those contacts I'm happy to share.  It will cost you and the delivery fees can be steep but we have always been happy to be able to get Claudia around.

Now for those of you reading that can't put all of this information to immediate use here are some ways that you can help:

1. Be patient if you see a family or individual with extra needs.  I promise you they don't like being in your way any more than you like it.
2. If you don't need it don't use it!  The wheelchair accessible bathrooms are for people in wheelchairs not for you to use as a dressing room.  And being a twin mom I can relate but they are really not for double strollers either.  The wheelchair accessible parking spots should be saved for side entry vans.  Having rented a couple of vans with side lifts, it would be really nice to have those available when needed.  There is usually only one or two spots that will work and if another car is parked there we had to circle around and wait.
3. SMILE and be compassionate.  There is tons of waiting involved when you have special physical needs, and it takes so much patience on part of these individuals.  Just for a minute try to put yourself in their wheels and give them a smile.

One last final note: Claudia made a friend on the plane to Nebraska with a young lady named Yael.  She was ten and had gorgeous brown curls and a smile to melt anyone's heart.  Her mother guided her over to Claudia and they had so much fun chatting that we ended up letting them sit together.  Yael happened to be blind.  They had the best conversation about how they respond to meeting people.  Both were completely annoyed by the obvious questions, "why do you have a wheelchair?", "what's wrong with your eyes?".
And that is my final point, we need to look for traits and interests we have in common.  No one needs these obvious differences pointed out over and over.  Be a friend and find something in common.

Circus

Our church group planned an outing to the circus!  The kids were interested so we headed to downtown Phoenix in the warm temps (115+).  We were envisioning trained lions, acrobats, and some clowns.  The circus certainly has come a long way!
The US Airways arena was full of excited fans and the show did not disappoint.

From where we sat, far away from our able-bodied church group, in the "wheelchair accessible" area I could not help but long for a different arrangement.
I feel like I should bite my tongue while I type this.. because I know we have come a long way but if I don't mention this will it ever change?
Would we accept a different arrangement where we grouped together all the people who were say over-weight or tall?  In addition it is extremely difficult to get tickets for a family in a wheelchair accessible area because it is for wheelchairs.  Guess what if you are sitting by Julianne and Vincent they are going to eat your popcorn and cotton candy.  I won't be able to do anything about it because I'll be in the wheelchair area.  Just saying it doesn't work.

It makes my head spin.. makes me want to quit bothering to swim against the tide.  Makes me want to board up the doors and stay home.. or join a circus and fly out of a cannon!

Speaking of flying, try that with a power chair!  You have to disassemble your chair and remove anything that you don't want to be pulled off or broken off and then transfer into a seat on the plane.  Claudia's power wheelchair has been damaged to the point of needing repair on 75% of the flights that she has taken!

I really don't want to complain because we can manage this.  We can currently handle driving the 30 minutes each way to get the wheelchair examined and then again to get it repaired... but I know there are others struggling more than we are and why?  Because we allow people with disabilities to be treated differently.

Not to worry we are not giving up.  The kids had a great time at the circus and thank you to the friend that sat by us.  I do hope that some day we have planes that will accommodate wheelchairs, and Claudia can attend a circus with her seven grandchildren all beside her!

Power Soccer

Claudia is such an amazing girl...  

After the initial shock of having all the kids home for summer, we settle into a routine, and I get to reconnect with my kids.  All of them surprise and amaze me.

  

Claudia however is thoughtful and pensive well beyond her years.  

She studies people.  

And she wants so badly to be a helpful and contributing member of society.  

The civil rights movement really grabbed her attention in school and 

hopefully will kindle a lifelong passion for equality.

She is brave.  She is special, and I feel so darn lucky to be her mom.

Photos from SpoFit where she tried a Power Soccer clinic!

Hope

We pulled Miss. Claudia out of school to thank a generous supporter of Camelot.  Bret Michaels and his family fund the care of Barbara.  Barbara is an Andalusian mare who is calm and beautiful.  Camelot is a therapeutic horsemanship program that runs entirely on donations and does not charge the riders a penny.  

I thought we would be good sports and meet Bret and thank him this morning.  And yes, I did my best to sing Claudia "Every rose has its thorn" so she would know who this generous man is.  He was quite warm and friendly to Claudia, he even told her she was beautiful.  

What I did not expect is the hope that he shared with us.  Hope that by reaching back and reinvesting ourselves we can help each other.  So thank you Bret and thank you Camelot for all the empowering you do!

Progress

No one could explain the steps that Claudia would take in life, no one could make a chart of her progress.  No one could ever explain how happy we would feel to watch her drink from an open cup.  

Claudia makes her own way and we are so proud of her.

Plunging in from the side of the pool and rolling over onto her back for a breath of air!  Awesome.

Inspiring..

Kidwalk

Has arrived!

Wally

Have you seen a smile this big? The giggles poured out too!

Introducing Wally... a super sweet black lab who is training to be a service dog! During the month of October, Wally will be visiting and working with Claudia. We hope that this will work out but are a little reluctant due to Claudia's dog allergies. She has been taking allergy shots in hopes of overcoming the runny nose and itchy eyes, but we may still have some issues.. we'll see.

EuroTeam

With a look of determination Claudia has begun a two-week course of intense therapy in Iowa. Go, girl go!

BIKE trials

Reach for the stars on CP awareness day!!

Some recent photos from a field trip to St. Mary's hospital. That is Claudia on the right as the surgeon! I love reminders that she can do anything!

Today is Cerebral Palsy Awareness Day...

If you are interested in learning more follow this link

Soap Box...

It may seem a bit crazy to some but we are looking at our summer weeks and planning already. We are choosing time to visit family, time for nature camp, time to take swimming lessons, etc. And yes, we are very blessed to be able to even think about these activities for our children. I do realize this. Though it does not come without some heartache.

See as a mom of a child with some special needs we are constantly making "special" arrangements. Matt and I have this discussion weekly, who is driving Claudia to therapy, which mobility devices we will be taking, who is taking the rest of the kids, which vehicle, etc. There is much to think about when planning with kids and more to think about when planning with kids that have power wheelchairs or special mobility needs.

Back to summer, I love finding activities where Claudia can fully participate and be included. Nature camp seems to fit the bill, everyone loves nature and being outside. So I called the nature center to discuss arrangements. Today the local nature center called me back and said "they don't have anyone trained in that to help her at camp". This was after I offered to be present for any bathroom needs in the 2.5 hours.

On to a local Christian camp, where we heard that we needed to find someone to help her because they would not have extra hands to provide a lot of extra help.

I would love to be the one helping her, believe me, but I have two little problems. In the end, it may be easier to find a qualified babysitter for Vincent and Julianne so I can be free to be the qualified helper that Claudia needs.

You may ask: "Are there not services to help parents in this situation?" and yes there are some.. They work great if you fall into the category of getting medical assistance for less than you are paying into the program. Just to compare, we would be paying $20 per hour for Claudia to receive a helper from this organization making the week at the nature center a whopping $320 compared to the standard fee for Eloise to attend $70. Claudia is worth every penny but we are ready to forgo the disability tax.

Don't believe me.. price out a bike for Eloise about $80 and for Claudia with the "special disability features" between $500-$3000. I'm not kidding, and this stuff is not covered by any insurance or special state funding.

Returning to the topic of summer plans we are thrilled when we can find someone willing to help Claudia at dance or swimming. It's a lifesaver when we can have piano lessons in our house, and they don't charge extra because of our extra needs.

But I do have to admit that Matt and I were thrilled to read in the PACER newsletter that extracurricular activities are allowed to be included in a child's IEP (individual education plan). I dislike that this battle has to happen in the already strapped-for-cash public schools, but on the other hand it is so important for all students to be included in extracurricular activities that I'm elated. She deserves to be included and for her needs to be met with dignity and respect.

In my lifetime I would love to see these services and plans in place for people with special needs as a standard. Some cities in the U.S. have committed to making every public bus wheelchair accessible. School buses need to catch up to that standard as well. It is time for us to make a decision that being wheelchair accessible and meeting special needs of individuals with disabilities is standard service.

Kidwalk

For the most part Claudia gets by with the walker that we purchased for her around age two. On the verge of turning seven we are looking into the next walker. It has taken us a long time to decide mostly because the perfect walker does not exist. I feel like we are having to choose between two different frames of thought. One: do we push her with a walker that takes a lot of effort to use but is more realistic to transfer in and out of, or Two: do we chose a walker that she can use more easily because it offers her a lot of support. I have to say that after this two-week trial of the KIDWALK, my mind is made up.

Claudia has been doing treadmill walking for about two years now. We have a set-up where we put her walker on top of a frame so that she can hold onto her walker while the treadmill moves and she walks. At best she is able to walk for 10-minute stretches of time before she fatigues. Today we adjusted the set-up and used the KIDWALK on the frame over the treadmill. She walked for 51 minutes! Enough said.