Wednesday, January 18, 2017

Conversations with Max...

Before school today, Max told us he was excited to read the book he and his teacher are reading.  We assumed this meant he was not looking to do much work, but was hoping to listen to the story that has caught his attention.

When his teacher got here, it took him his usual fifteen minutes to get warmed up and then he was off like a shot talking with his computer. His first order of business was to tell us, "Mom, I need help. Please support my hand." Max has been asking for support under his hand when he uses his talker. This is a new thing, and one that ties me to his side any time he's using his device.  That said, he's faster than he's ever been, and saying more than he's ever said so we're trying to figure out how we can replicate it without it being me, his teacher or his speech therapist at his side.  I think a lot of it has to do with getting all the attention focused on what he's saying.  He will talk without me holding his hand, in fact he will use his device when I'm out of the room.  But when he really, really wants to get a point across, it's "Please support my hand."

Today's discussion with Max was one to put on the blog because it was so incredibly thought through. We all stood amazed at his ability to communicate in such an effective way.

He started by calling his dad into the school room. "Dad I need something. I need to be held."  He will often ask for his dad to come in and break up the work of school.  Steve told him he was working and Max needed to work and then they would play after school.  Steve went back into the other room and I started Max's food.  He told me "just breakfast" meaning it was too early to eat, he had just had breakfast.  It had been a couple of hours and was time to eat so I told him to tell me if it bothered him and I would stop it.

His teacher started reading at this point and he got to work on forming his thoughts to make us all stop and listen to what he had to say.

"Go with ocean able to take my father."  Okaaaaay....where is he going with this?  "Was a long and she had never come back with her ocean"


Oh boy.  We have been trying keep the talk of Steve going to visit Abbey to a minimum but he caught on and wanted to be a stowaway.   "Go with ocean able to take my father." - translated means I CAN go with Daddy to the ocean. 'Able' always is an argument to us that he can do it and he thinks we think he can't.

"Was a long and she had never come back with her ocean" - translated means Abbey is far away at the ocean and he wants Steve to bring her back.  We started immediately trying to tell him he wouldn't be able to go with Daddy on this trip and Abbey has to work at her new job so she won't be able to come back home this time. Silly Mommy and Daddy...let me try again.

"My west dad let's go somewhere Where do you want to take me?" - translated is pretty easy to understand.  He wanted Steve to take him west with him, but gave him the opportunity to get it right this time.


 He didn't wait for the answer from Steve, but told him where he was needing him to take him: "Abbey."


More explaining of how it wouldn't work out  this time.   And more pleading from Max. "need I want"


We explained that it was just too long of a trip, and we would have to plan it out just like when we went to California.  It took a lot of planning.  Not to be deterred, our problem solver had the best idea. "help my dad drive"


We told him we couldn't drive, it was too long of a trip, and there was the small issue of there being an ocean between us and Abbey.

To which he replied,"please"


We were running out of explanations at this point.  We hate telling Max he can't do something.  When it comes to obstacles for Max, we find a way or we make one.  That's just who we are.  But, this one is hard.  We have no idea how we will ever get Max to see big sis where she is now.  So the more we explained it just wasn't going to happen, then more he tried to convince us otherwise.

I'm sure we were giving some reason around it when he stopped us and said "OH NO!" which comes out with the most inflection his talker can spit out.  It's loud and high and gets our attention.  Then he said "go with you."


"I'm sorry buddy, you just can't this time."

Then the final blow - "it stinks."  We told him we completely agree that it stinks, and we will keep trying to find a way to get him to see Abbey.  Just not this time.


Then a special jab to let us know what he thinks of staying home with mom while dad and sis play - "it's boring."


Again, we agreed with him and told him we would try to figure out a way for him to have a special trip again.  He told us he was going into his adjectives to describe it.  Then he told us we were "mean."  And then switched gears to say to his teacher "old woman easy today."


Now listen, his teacher is a real good sport because she had tears rolling down her face laughing at this guy.  He had just poured his heart out trying to convince us to get him on an airplane or drive across the ocean just so he could see his sister.  When he didn't get his way, he just wanted her to know that he wasn't up for school anymore he wanted to take it easy.  He knows her name and calls her by name every day in school.  So why he went the route of calling his teacher an old woman wasn't immediately understood, but as soon as he said it, he smirked and we were all laughing.

Then he tied it up by making sure she knew it was funny and a joke.


The pictures stopped after this, but he said, "Mary, I want to go somewhere I want to go for a walk." He said this several times after telling her he was not up for school today.  And they made a deal that he could go on a walk and when we got back they would read some of their book together and learn a little more about MLK. He was good with that and off we went to take him on his walk with his teacher.

Some days when he's fussing and frustrated, it's easy to get frustrated along with him when I don't understand what he wants to tell me.  When he has days like this where he tells us everything on his mind, I can't help but feel even more frustrated for him that he has so much inside he wants to get out. I hope he's will continue to tell us all the things stuck in his beautiful mind.

Tuesday, January 17, 2017

MLK Day 2017

Following Max's lead again this year, we drove into Denver to take him to the MLK, Jr. memorial.  I don't know that we'll ever fully understand the connection he has with this hero of his.  But, I am grateful to Max for continuing to remind us the importance of looking to the people in history who did good and how we can learn from them.  

It was snowing, but Max wanted to listen to the mayor explain what the monument stands for, and the short history of Dr. King's life.  




He wanted to look up to see him at the top, so Steve tilted his chair back so he could see.




We walked around and read every quote, and ever date on the timeline.   Max got so excited 
when Steve read out :

"I have a dream that my four little children will one day live in a nation where they will not be judged by the color of their skin, but by the content of their character."

We asked him if he liked that speech the best and he said "yeah" I asked him if he still had an idea and he said "yeah".  I believe one day he will let us all know what it is. 



Wednesday, January 11, 2017

The cost of a life...

This is my facebook status from this morning.  It's clearly it's own post and people asked if they could share it, so I'm posting it here.  It's a sort of follow-up to the post I wrote here seven years ago, when the Affordable Care Act was signed into law, and we were so hopeful that it meant we wouldn't have to worry about health coverage again.  Go give that a read if you don't know our journey up to this point.  Then you can see where we are today...

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I just had a sick in the back of my throat moment when I called to check on two of Max's prescriptions - out of the 17 a month he has filled. The new pharmacy tech said it would be around $1,000.00 because she didn't see he had Medicaid as a secondary insurance. . . for two medications.

Max has Colorado Medicaid through a waiver, which looks past our income and has determined that due to his extensive needs related to his disability he requires additional support through Medicaid. We use the medicaid as a secondary insurance. Our primary insurance (which we pay monthly for) picks up what it will, then medicaid picks up the rest.

After I assured her he most definitely has Medicaid as a secondary insurance, she ran the prescriptions again and they were covered 100%.

Two medications, for the first two weeks of the month would cost us $1,000. These aren't even the expensive medicines.

If you've struggled to understand the reaction we've had towards this new administration, and their view of medicaid being an unnecessary expense to be cut, think of who benefits from Medicaid.

Think of Max who will be affected so much. Max is seen in over 10 specialty clinics - just to keep on top of his health. All bill medicaid after they bill insurance.

Think of the thousands of dollars worth of medication we have to give him to stay alive, which are covered by medicaid after our primary insurance pays.

Think of the thousands of dollars worth of durable medical equipment which allows Max to travel from room to room, allows us to safely bathe him, allows us to take him outside of our house, allows him to go on walks, allows him to be out in the community - comfortably, safely, and with dignity.

Think of the thousands of dollars worth of enteral supplies paid for by medicaid which allow us to feed him. Yes, we even rely on medicaid to provide the equipment which allows our son to eat.

Think of me, because my income as Max's CNA is paid for by medicaid. This incredible program saves the state tens of thousands of dollars a year by keeping children out of facilities by allowing parents to be their paid caregivers.

Think of me and Steve going back to sleepless nights because medicaid pays for the nurses who have watched over Max and kept him sleeping and heathy for the past 3 years. Have I mentioned Max didn't have a single hospitalization or cold in the past year? The most stable year of his life to date. We know this is due in large part to his sleeping - such a simple thing.

Think of us, because all of this is more than we're pouting because our side didn't win. It's so, so, so much deeper than that. And it isn't something we're going to "get over".

As always, we will continue to fight until our last breath for him. We are upstanding, tax paying contributors to society who just happened to be the lucky ones who were given a child with extraordinary circumstances. And we feel like we now have a government who won't address those very real fears.