A Failing System

Last week was my very first time observing Eli in the clinic. It was so awesome to see. 

He was so excited to have me there and I loved watching him move from one place to another, loved hearing him speak, loved sharing in his excitement. 

I watched intently while his therapist assigned to him that day handled a meltdown. I sat quietly and took in everything she did and then when it was done, she looked at me and asked, "Do you want me to explain that?" 

Yes! 

So she explained using "hand-over-hand" motions to "help" him complete a task that he doesn't want to do. How you count 30 seconds in your head and stay focused on continuing the task for that amount of time. She explained how certain words signal to him that the task is over. 

I have been able to see him properly show emotion - and by that I mean how to verbalize "I'm sad" rather than running into a wall. 

And that isn't a joke. It's unbelievable to see how much he is improving. 

I am so grateful for it.

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So many parents fought their way to Washington to get proper care for kids like my little giant. Therapists and doctors and psychologists all argued about how much there must be adequate coverage for these military kiddos with drastically higher rates of being on the spectrum. 

They fought for my son before he was even born. They fought for me before I was even a mother - before I was even a wife. 

The months spent fighting through the red tape associated with military healthcare were worth having Eli in this program. Without question. 

And all of that may be for naught. 

Tricare has rewritten its policy on little giants like mine. They have taken more steps backwards than I can process ... and they aren't telling families about it yet. If you happened to be "linked in" to advocacy groups, or check written policy every other day, you might have caught the changes. Providers don't even all know. Tricare employees haven't been given their ways to speak about it yet. 

Here is what I have been able to decipher so far...

They want to limit my son's therapy to two years. 

Two. 

Total.

After that, he's on his own. We're on our own. So when he is entering kindergarten - the biggest educational transition of his life up until that point - he may no longer be eligible for the very services that will help him to make that transition. 

That fails my child. 

They will require standardized testing every 6 months. And every six months he must show progression or he can be dropped from coverage. 

No specialist, no teacher, no therapist has ever been able to have Eli successfully sit for one of these tests. He doesn't cooperate. His "scores" show a picture far different from the reality - and every person who has attempted one of these tests will tell you that. But on paper he will show as not progressing. 

Never mind that these kiddos go through major transitions that these tests can't take into account. Their parents deploy. They move. Their realities turn upside-down. Military kiddos on the Spectrum are going through a continuous yo-yo that will always have regression. Always.

In the very moments when they need these services most the system can drop them. 

That fails our little giants. 

Parents must participate in all therapies, eventually taking them on entirely ourselves - omitting the therapist in total. We will be graded by how well we perform these services and our child can be dropped from the program if we don't or can't fulfill the role of the therapist. 

Being beside Eli during my time of observation was incredible. I will look forward to it every week. But I have another child - who needs my time just as his brother does. Who deserves my time. I want to know how to do everything possible to help Eli thrive through this life. I will chart his goals with him and I will sure as hell help him to achieve them. I want to learn everything I can to help him. There are incredible people who have spent years of their lives to be trained to help these very special kiddos. Sitting beside them every day will not teach me the things they know. It will teach me how to handle each individual situation I see; it won't teach me how to respond to something new - and every day there is something new. 

Many parents work. The position this puts these parents in is atrocious.

Therapies may not be able to be used to address educational goals. 

Which gets me to no end because so far the public education side has failed us. 

Without question, the one that gets me is the two years part. Two years.

Eli is high-functioning and that "two years" still scares me to death. 

What about the kiddos who aren't?

They deserve better. 

They watch their mommies and daddies fight for this nation. They fight through the confusion and whirlwind of what this life puts them through. 

They deserve better. 

They move and endure and face challenges unimaginable for the sake of being part of a family that serves. 

They deserve better. 

We owe them better.

We must do better.

Or we will have failed our children.

Giving Up His Days

After a very difficult and frustrating battle with Tricare, Eli is finally approved for and enrolled in ABA Therapy (Applied Behavior Analysis). When that all finally fell into place I was so relieved I felt myself physically relax. 

And it didn't exactly "fall into place" - I had to make phone call after phone call, bust down (okay - not exactly) a few doors, and let other people know I wouldn't let them fail my child. But we got there and he starts on Monday. 

I received the schedule and instructions today. At 8:30 in the morning on Monday I will drop my kiddo off with his lunch, a bag with a change of clothes and diapers, and not see him again until I pick him up at 4:30 that afternoon. 

It's harsh. 

The coordinator even recognized that. She explained that this allows him to immediately recognize routine without us interrupting the very important routine of the little (and not so little) ones already there. It is important for him to focus and have this defined space and time. After two full weeks of therapy, if they think he's ready, I can observe. Logically, I get it. I see why that is how it needs to be. 

This center is 45 minutes from our home - each way. If something happens, I can't get there immediately. If he isn't okay, I won't be there to know. How do you hand your little giant off to people who don't know him? Who don't know him the way you do? 

And what scares me even more ... how do you recognize that for right now - right now - someone else is going to learn how to communicate with your son? Someone else is going to cheer when he says, "Do you hear that?? It's a Train!" like he did this week. Someone else is going to make right where I haven't been able to. Someone else is going to see a meltdown and they are going to be able to figure out how to handle it. They are going to connect and understand my own child in a way that I can't yet. 

I have to drop him off and trust them with that - trust them with my littlest little. What if he is scared? What if he needs me? What if he screams and cries and kicks? How do I give someone else his Mondays? And his Thursdays? And his Fridays? 

He's my baby-baby. My last baby. I want those days. 

How do you accept that you can't understand things about your kiddo that a stranger will learn to before you do? 

I know this is the right thing to try. I know this is a good place for him. I know that intense, early intervention gives him the best chance at "recovery" and adaptability and "normal" life. I know that. I do. I know why we are doing this. I know why we fought for this. 

I know that I want to understand my son. I want to know why he does so many of the things he does. I know I want this for him - that as his momma I owe the very best we can give him. 

I won't be there and that is hard. I have to trust strangers to cheer for him and hug on him and give him what he needs, and in a few weeks to begin to teach me. I want to know my son - to know every possible technique and therapy and behavior possible to unlock his potential. I owe him his future - a bright, promising, glowing future - even if it means I have to give them these days.