Parents of children with autism and invisible disabilities understand.

We understand the space in which we started.

We took their little hand.

The clear starting point requires little to no explanation.

We rolled up our sleeves. 

The starting point is outlined in bold, with the iridescent ink.

In the beginning, there was a well lit plan. These challenges felt normal.

We vowed to withstand.

These challenges were easy to explain. We chatted with coffee. We kept it tame.

There was the ever so expected moving up, and the less than graceful sliding back down. A fair share of the expert-level climbing. We brushed ourselves off when we hit the ground.

We came prepared. Research conducted. We read the bestsellers list. And walked the path as they instructed.

We bought the shoes with all the right tread. We were stronger now. We got out of our own head.

But then…

The phone calls arrived to speak with the wrong departments. The required test was far from home. Surrounded by the sky-high apartments.

The appointment was held over underground parking lots. We tried so hard to go. We thought we had a shot. And was there proof to show?

We piled on the stress in multiple hidden layers. We asked our family for more uncomfortable favors.

The missed appointment charges were adequately warned. The layers felt heavy and worn.

The wrong services were covered by the right insurance. Nothing made sense. We were talking about children. Our hands were clenched.

Emails bounced back. The wrong insurance covered the right services. Wait, we were confused. Was it out of pocket. Was our deductible used?

When would we get this right? We were losing precious ground. Who could we speak to? Was there a redo? And can the April meeting notes be found?

The long wait lists collected more names. Then there was anger. There was a good amount of shame. This maze was tangled. This was not a game.

We took a big step back. We changed directions for the best. The judgments were posted. But there was more resilience to invest.

The hope was set in stone. This was my child. This was my home.

There was sharp concentration needed to hold this steady. And the intuition to walk when we were ready.

Calm energy to steer. The falling down that was harder to hear. The quick to stand up. And the authenticity that started to appear.

The brushing off of knees. The plans that fail to be true. The not giving up on hard days. When you knew this was not about you.

The beauty of the journey. The walking off path. The brighter days. And the glitter we found in the aftermath.

This is the path parents face…

The parents who climb this intricate maze never made in the best interest of their child. A maze made for groups. Less made for individuals.

A maze made for awareness. Less made for acceptance. A maze that talks the talk of individualized support. A maze that was not built to walk the walk. Not built to contort.

A maze full of weak systems. A maze that slipped through the cracks. A maze strategically lined with paths. Paths which only lead to dead-end barriers, orange cones, and direction signs painted in black.

For the parents who had to take the alternate route. For the parents who had to take the long way around. For the parents who advocate on the top of volume sound. To the parents who normalize little to no rest. For the parents who give, and give, then give their best.

You are far from alone…

There is laser focus needed to walk along this road. To move at a customized pace. To not give up. To not implode. 

This maze is strategically lined with out-of-date policies which drive financially driven stuck-in-mud systems. The truth is more than clear.

There is keen determination involved in not turning back. There is discipline rarely talked about.

We waited eight years for the autism waiver. Eight years of waiting. Advertised as normal. No real debating.

We waited for services our child was entitled to by law. We became the old news. We became the out-of-date articles. And last year’s old top song.

Then, moving down the list at the pace of a snail. We had to check in. We stopped first to exhale.

We were boring. Brushed aside. We changed our plans. We changed our minds.

We sent the follow up emails and called on time to check in. We emailed all the wrong departments again.

Then, there was drained energy. We fell into our hands. The wait contradicted the early interventions we planned.

We had more than forgotten by the time the welcome to the autism waiver call came in. We forgot what we were waiting for. It still felt like a win.

We jumped for joy. We thanked our lucky stars. This wasn’t magic. But we knew this was ours.

The golden papers were signed with new high hopes. Hopes that reached the sky. There was relief. We stopped asking why.

But then..

More options on the table collected more setbacks. Setbacks were painted like fresh new subjects.

We needed more tests, and not just once or twice. A school diagnosis would not suffice. Be proactive. And pay the price.

Please add your name to the waiting list. Please write this down. Here are three recommendations. Oh no. I think that company left town.

Sorry this one only serves children under ten. We can’t add you to our list right now. Do you know when?

We had to wonder. How was he found eligible for the autism waiver, but not the services they were under?

And then…

The systems never communicate. The systems collect layers of mismatched files. We thought we had what we needed. The systems are broken. And we will be here for a while.

There were years wrapped around years of testing. Evidence, recommendations, pediatricians, and lack of resting.

Mom, just be patient. We understand. Let me send you a copy. I can mail it by hand.

No, please Mom, do not mention. That department is understaffed. Let me get their attention.

If I do not call you, please do reach out. We are waiting for approvals. And remind me what this is about?

This takes time Mom. The autism waiver is complicated. This is why many doctors do not reinstate it.

Wait Mom. One doctor looked like a match, but he had a waiting list on year two. Would you like me to add you?

And just some mom-to-mom advice. Don’t take this wrong. Have you tried taking away his phone? Did he pick out brand a new toy on amazon?

This worked for us. In my opinion It will for you. My nephew is on the spectrum too.

And then…

We had to step off the path. We had to walk away. The stacks against parents who advocate.

Parents who walk this journey understand this all too well. Parents who have taken a different path. Parents who are still learning. Parents who feel compelled.

You are far from alone on this journey.

You are far from alone on this path.

Be kind to yourself and know…

There is glitter found in the aftermath.