And the battle begins again...sigh.

Today I began another battle.

The process was familiar to me. Frighteningly so.

And frustrating as all get out. But like I said...familiar.

Let me start with a little background...

My son Truman is five years old and shortly after his third birthday he was diagnosed with Autism. Dave and I have struggled over the past few years to unravel his myriad behaviors to try to maximize his development. We have had a great many failures...but thankfully probably even more successes. But we fight on, every day, every night. We fight.

Because honestly, what choice do we have?

We cannot allow our child to wallow in a world of isolation that will only lead to a life of dependency. We want him to have as normal a life as possible. And we are hopeful that he can achieve that someday. But it is going to take a LOT of work on all our parts.

Truman is growing. Stronger, taller, bigger, every day. And also, he is becoming more and more defiant and independent. The problem with that is he has virtually no awareness of personal safety, self-care, or hygiene. And as he grows, I am shrinking and losing my ballast that once was somewhat protective of me in our physical interactions. The time is fast approaching when he will be able to physically over-power me. Before that happens, we must ensure the safe and effective function of our family.

Since his diagnosis I have heard from various professionals that work with him about different supportive programs that can help us in our home. I've been subtly (and sometimes not-so-subtly) discouraged from seeking out those programs. I've been told things like...

"Oh, I don't think you are *quite* destitute enough to qualify for that program"
"Truman's behavior isn't *that* severe. I mean, he does talk, after all."
"Isn't he toilet-trained? Oh, then you won't qualify."
"He's aggressive, but it's not serious because he's so young (or small, or it's only towards you, or it only happens at home...etc.)
"Since the budget cuts *NOBODY* is getting that (fill in the blank) service."
"I think that is the responsibility of the school district."
"I think that is the responsibility of the medical insurance."
"I think that is the responsibility of regional center."
"I think that is the responsibility of the family."

Sometimes I feel as though Truman's (and our family's) needs are a giant hot potato that the various bureaucracies are passing from one to another. The result of all this passing back and forth is that a lot gets dropped on the floor. And sometimes people get burned. Usually us.

I know that all families have struggles and challenges. Everyone has something in their life at one point or another that they think will just take them out. The problem with having an Autistic child is that it just doesn't seem to end. Behaviors evolve or even resolve only to be replaced by something else. Sometimes it's something even worse. And then there is the ever-looming specter of regression. Even when a behavior goes away, you are haunted by the ghost of that tantrum, or stim, or physical symptom lurking around the corner.

You never really relax. You never really feel safe. You never really feel like your child is "better"...as if that's even a good label.

So you fight. Again.

Today I decided to seek out IHSS (In-Home Supportive Services) and Protective Supervision for Truman. This is an extremely controversial choice for many spectrum families. We want so desperately to feel as if our children are just part of the range of human possibility, it feels somehow like a failure to utilize these services. We don't want to admit we need the help. We want to think we can handle it all on our own. And that is a noble wish...but often not a realistic option.

You see, there is a reason these agencies exist. Primarily to ensure our kids can stay in the home and not in some institution somewhere. This sounds drastic...but it's the truth. Had Truman been born thirty years ago, his lifestyle and opportunities would've been very different. So I'm glad the resources are out there to help families stay together.

I just never thought we would need them.

Now I know, we really need them. Really.

And so now - back to my original statement about the fight, the frustration, the familiarity...

This afternoon, I began by calling the phone number I was given by a friend of mine who has IHSS for her son who has some pretty significant developmental challenges. I couldn't get through to anyone. After I pushed the selections for "information and assistance" the phone rang for over 12 minutes.

Yep, 12.

So I hung up and called back. Same thing, only this time for 18 minutes.

So then I thought, "maybe this isn't the right number." So I googled "IHSS application" and the number on the website was the same as the one my friend gave me. There was also an alternative number for another agency, so I called that.

They referred me back to the original number.

So I called the number again and this time pushed "O" and got a human. She told me I was NOT calling the correct number. That I needed to call some other number. Which I did. Which was also incorrect. I got another human, but she also told me I was STILL calling the wrong agency.

She referred me to another number, which I called, and guess what?

Busy signal. For minutes and minutes and minutes. I lost count of how many times I tried the number. I finally went back online and used the email option to attempt contact.

The part that makes me nervous is there is a disclaimer that states not all issues can be answered by email due to privacy issues. So I feel like I may have just thrown a message in a bottle into a giant sea and have very little hope it will reach the appropriate person.

This is what it means to be an advocate. To see a problem, identify a possible solution to that problem, and then scream at the top of your lungs (figuratively speaking) until you finally get someone to agree with you about the solution.

So I went through all of the that today.
And then I gave up.

For today.

But tomorrow I will fight again.

Because, honestly, what choice do I have?