My Family

My Family

Saturday, September 9, 2017

I didn't think about your daughter

In our house you will find that we are a blend of options in discovering what works best for our kids. You will see things you are used to seeing like medications, equipment, that sort of stuff.  Along side of that you will also see some non-traditional things as well.  Essential oils, my giant textbooks of herbal medicines, and maybe some familiar equipment used in different ways.

You see, I've had to stretch and grow to figure out what works for my kids.  We don't all come out of the same cereal box and things that work for others don't always work for us.  Things aren't always black and white.  They are often various shades of grey.

Recently my son was accepted into a unique study.  A worldwide research project is being conducted to see if a unique treatment can be beneficial for kids like Marvin.  It would help with some of his dietary woes and we were excited to try it.  The practitioner had recently relocated and gave me her new address.  When we arrived this is what we saw.

I drove around the building thinking this was a joke.  There wasn't a handicapped accessible spot anywhere.  So I called the provider and let them know we were here and the building had NO ACCESS!  

They came down and their first words were, "I wasn't thinking about your daughter."  Their last location was accessible and we were able to get Cary Lynn up and down.  Despite the fact that we had seen this person in their previous location numerous times and my daughter was with me every time for some reason it escaped this person's attention that my child was in a wheelchair.  

The next words weren't much better, that this was a pro bono treatment.  Maybe I could find someone who needed community service hours to help with one kid.  They didn't want to treat in their home because that was their me time.  I was rather steamed and wanted to offer a shovel while they were burying themselves. 

Look, I feel like we need to have a conversation here.  You may not think about my daughter or the 2.2 million people in wheelchairs or the 6.5 million people who use walkers, canes, or crutches to get around but maybe you should.  

I'm not saying that every home needs to rush out and become accessible but I would like you to think about how it feels not to be included.  How hard it is on our family and others like us because our kids can't go places.  You may not be able to fix your home but how about finding a place that everyone can go to.  

If you are practicing medicine or holistic treatments think of the large population you are limiting. The people who would probably benefit the most from your treatments have no access to you. Clients that would pay you for your services if they could reach you will take their dollars and go someplace else.  

Bottom line, it's not OK and no amount of apologizing is going to fix that piece of my heart that just got a little more battered.  It's not OK to justify the lack of accessibility by saying that this is a pro-bono service.  Free does not mean that you can get away with whatever you want.  That would be the equivalent of me saying I could rob your home and take your valuables because I am giving you free babysitting.  It's a ludicrous argument.   

We drove for a while in silence.  Marvin piped up, "Mama are you upset?"  I told him I was, but I would try to think about our options.  "Well, I don't really need to do this.  I'd rather go someplace that is nice to my sister.  Maybe we can find something more fun to do, like legos!"  

The study would have been awesome, but you know what?  My kid already is awesome.  Both of them are.  If people can't see that then they are the ones with the real handicap.  

Sunday, September 3, 2017

Mountain Highs and Valley Lows

There is no black-and-white situation. It's all part of life. Highs, lows, middles. -Van Morrison

That is the truth.  When you parent special needs kids you ride that high/low wave.  This past month has been full of mountain highs and valley lows for us.  While I was in church I spent a lot of time thinking about the past month.  The good, the bad, and the downright frustrating.

We've been dealing with our school system.  It hasn't been good.  LCPS is supposed to provide some very basic services to my daughter.  I'm talking about bare bones here.  They basically need to check in once a week and see if she's still breathing.  Not too challenging in my book.  School has been going for a month and right now we have yet to have any services provided.  We had someone lined up but at the last minute this paragon of virtue decided not to do their job.  I've emailed our school board representative but they also chose to ignore me.  It's sad that she has to go without minimal services.  But out here it's really not unusual.  Which makes it even more sad.

Marvin has an MRI this week.  I'm used to Cary Lynn having them but for Marvin this was something new.  UVA wants to check out some "suspicious" items.  They have tried to get his early MRIs he had beforehand, but so far when Marvin became our son his previous records disappeared. What if they find something?  He already has so much going on I really don't think he needs more. He also developed Osgood Schlatters disease.  You can read about it here, but basically it's glorified growing pains.  Fun fun fun.

The insurance has changed here as well.  We've all been moved to something called CCC+.  It's basically an MCO.  I've spent hours on the phone trying to figure out what Drs. are covered.  We also just got a call from Marvin's psychologist's office about insurance.  There is this really big myth that insurance covers it all.  It doesn't.  We pay out of pocket for a lot of stuff.  Therapies, medical supplies, some Drs., and extras.  Those things aren't cheap.  As I'm writing this I've found out my daughter's food supply may be in danger.  If insurance decides to stop covering it that's $3,000 we will have to cough up to make sure she eats.  Little things add up.

My husband works really hard.  I used to work.  I now am a full time medical manager.  I miss working.  Not just for the income, but because I miss adult conversation.  I don't always find fulfillment in Legos, Minecraft, Peg and Cat, and discussing the importance of proper hygiene.  Go figure.  Or just a break.  My family is coming in a couple of weeks and I'm so grateful.  They will provide much needed respite but Colorado is a long ways a way to get the support that we need.

Despite the valleys, our mountain views have been really good.  Cary Lynn has managed to gain about 20 pounds in a year.  We now don't have to see the dietician as often, yay!!  She has had a good stretch of being healthy.  For that we are thankful.  She also is getting home educated (because I can't trust the school system to do their job). and is a feisty, sassy, and lippy kindergartener.  I tell her she's my most difficult pupil and she spits at me.  So we are off with a bang.

We tried school for a little bit with Marvin last year.  After talking with his team, the increase in his appointments, and the need for very tailored learning accommodations he's back at home.  He's doing really well and keeps saying he is glad to be back at home.  Not every kid is going to do well in a school situation.  We've accepted that Marvin is unique and that this is the way he learns best for this season.  Now he's a confident fifth grader and able to advocate for his learning needs.  Plus he delights in showing his younger sister how school "is supposed to happen".

All in all we are marching forward.  We may get knocked down but we always get back up again.  I'm proud of us all.  I'm also thankful for the blessings we have.  The kids are healthy, they are learning. Despite repeated hygiene conversations, I'm pretty happy too.  We will get through the valleys because my kids deserve more time in the mountains.  Here's to hoping we spend more time on the mountains this month.