Messages

Maybe one of the hardest things for us to do as people is to admit wrongs that we have done - wrongs that no one else would ever know. Our thoughts are ours. No one can hear them, know them, judge them unless we allow them to. 

Unless we "put them out there" for the world to "see". 

I didn't know why he mumbled when he spoke. It took three times of asking him "I'm sorry?" to understand that he was complimenting my dress. He didn't quite look at me when he spoke. Something about him made me feel "off" and I said a quick "thank you" and broke contact. 

He opened the door when we left a bit later. He mumbled something but I didn't hear it. I just kept walking and said another quick "thank you" while we moved past. 

When we came back the next day, I (shamefully) attempted to avoid him. Sitting Logan and I further down the waiting area, not looking his way. He was nice. Kind, even. But for whatever reason, I just couldn't shake how "strange" I felt around him. 

Again, we left when lessons were over, and again he held the door open for us and I said a quick and polite "thank you." 

The next day I paid attention. 

I noticed how he continually wrung his hands together again and again and again. How he shuffled his feet from one to the other, back and forth, back and forth. How he had to make an effort to make eye-contact when he spoke to people. About how he really had to make an effort to speak loud enough for people to hear him. I noticed that when he did speak, he did all of those things at the same time. 

I noticed him for the first time and I realized every gesture that I questioned or tried to ignore or considered "off" was a coping mechanism, what he needed to do to be able to speak to strangers surrounding him. 

I realized that every single gesture of kindness and inclusion and socializing was a struggle and triumph for him. That every word uttered that was accompanied by eye-contact was a BIG deal. I realized that I had judged this man - a man so much like my child. 

A man who was trying his best.

How humbling.

I spent most of the lesson talking to him. I noticed how he tried to slow his speech when he became focused on a topic. I noticed how he made every effort to look me in the eye and how it only lasted for a split second when he did. I noticed how hard he must be working every second of every day to do the simplest things that I take for granted. 

I noticed how quick I was to judge. I felt ashamed and saddened. I knew that what I had "thought" of him is what I fear any stranger will think of my son. 

That's he's "off," that he makes them uncomfortable. That "something isn't right".

When we left I asked his name and shook his hand. I told him I looked forward to seeing him again.

Tomorrow I will sit near him and ask him how his day has been. And I will listen when he gets lost in whatever topic he fixates on. I will try to make up for the ugliness that only I could have known in my mind. I will see him as another little giant battling to demand a place in the world around him. I will think of whoever his mother is - because I know she fought for him. I know she must love him intensely to get him to this point. I know that she must be so proud that he opens doors for strangers, and speaks to them, and tries like hell to look them in the eye. I know that she would cry if she could have heard my thoughts. They would break her heart the same way they break mine. 

I know this woman must be one strong woman. I know his parents must have given every part of who they are to make him who he is. 

I know that him being at the gym, greeting people, opening doors, takes everything out of him. I know someone will one day think my son is "off" and I know I will remember this lesson. This humbling lesson.  

Everyone is someone's child . Every "little giant" is fighting to find their place in this world. And it is hard and painful and then so incredible to see progress and triumph. 

I am learning so much with this diagnosis. We are growing so much with this journey. It is humbling and eye-opening and knee-bending. 

I got the message. Loud and clear.

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.