The Kindness of Strangers

Lately I have been dealing with a lot of bureaucratic red-tape.This means that I am literally relying on the kindness of strangers. No joke. I'm trying to qualify for IHSS/Protective Supervision for Truman which is a very complicated and slow process. If I were completely honest with myself, I would apply just for my own needs. But I guess I have a hard time admitting that I am that limited.

This whole process has been challenging for several reasons. Sure there's the research, the tons of paperwork, the endless phone calls, and incompetent or uncaring staffers to handle...but that's not what is really bothering me. What bothers me, exhausts me, worries me, and pretty much irritates me is this:

I feel misunderstood and unsupported by almost everyone I've reached out to. Even my dear family and closest friends seem to have a hard time understanding how and why these programs exists or why we would need them. I find myself repeatedly explaining and justifying...and often feeling somewhat ashamed. And this is not a new situation. I've been dealing with this attitude as long as I've been on disability.

The subtle inference that keeps coming up is that this is some sort of abuse of the system...or that these programs shouldn't be a part of the system to being with. Basically that taxpayers should not be responsible for the care of individuals with disabilities.

I know that the people making these comments have nothing but deep love and caring for me and my family, but I have to be honest and say that some of what is said hurts my feelings. I often get the impression that a lot of people in my life (even strangers I have brief contact with in other circumstances) feel I could and should be doing more to provide for myself financially.

I'm guessing the reason for this is that they really only see me or talk to me when I'm functioning pretty well. They don't see all that I go through just to make it through each day.

They're not here with me in the day time when I'm forced to lay down (not just sit, but actually LAY down) to keep my swelling under control.

They're not here when I have to dart out the front door to race to get to Truman before he makes it to the street.

They're not here sweeping up glass or plastic bits from the latest tantrum-induced tornado of destruction.

They're not here cleaning mud and sand out of Truman's mouth for the umpteenth time because he's decided to have a little “snack” in the yard.

They're not here as I fill out reams of paperwork, track page after page of behavioral data, create visual supports, write social stories, read articles, blogs, forums, and books constantly searching for other ways to help Truman.

They're definitely not here in the middle of the night when Truman is up running around the house, yelling, throwing things, demanding a movie, scripting incessantly at the top of his lungs at one, two, three, four, even until five o'clock in the morning.

They're not here in the afternoons when I'm struggling to make it through those last few hours until Dave gets home before I take my first pain pill, just so I can know for certain I wont be compromising my ability to care for Truman.

They're not here in the evenings when I am fighting the urge to lock Truman out of my room just so I can protect myself from his sensory-seeking behavior that injures and exhausts me.

They're not here when I am caring for my wounds, often bleeding profusely, as I massage the lymphatic fluid out of my damaged tissues.

They're not here well into the wee hours of the morning as I am fighting insomnia caused by a combination of pain, medications, hormones, and a child with their own sleep challenges.

They are not here, so they don't know what it is really like.

And I guess for that reason, I shouldn't really expect much more understanding.

But I do expect a little less judgment.

As someone who is extremely creative, ambitious, energetic, and innovative, the way my body has let me down is a disappointment I truly cannot articulate. Coupled with that feeling of sadness is a sense of inadequacy as I stress over my inability to properly provide for myself and my child. I would love nothing more than to be able to rejoin the workforce. I ache for the human contact, the feeling of purpose, and of contributing. The feeling I have is that somehow there is value in what I produce. I know what I am doing with Truman is incredibly valuable, but no one sees it, no one acknowledges it. I don't get the feedback I crave for all the hard work I do. Believe me, if there were any way for me to work, I would do it. I have searched high and low, but as of yet I have been unable to discover another way for me to put the supports in place that are needed in our family.

Right now, IHSS seems like our only option.

So...for those of you who still have questions, I am providing a very informative link to explain the IHSS program and what it takes to qualify. I hope you will read it and ponder the ramifications of what having this support will really mean to the function of our family. I honestly feel it will change our lives for the better.

Please join me in asking God to grant us His favor in this matter. We are eager for a resolution and to move forward. As He says in Jeremiah 29:11 "For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future."

And beyond that, try to remember what Thumper's Daddy taught him...”If you can't say somethin' nice, don't say nothin' at all.”


Grace & Peace,
-Hannah

What me, worry?

The past two weeks have been pretty hectic around here. I've had appointments, meetings, struggles with Truman's behavior issues (especially sleeping problems!) and various other day to day stuff. But after today I realized everything is about to take a giant shift. Hold on to your hats and glasses, people!


I'll begin at the beginning.


Truman receives behavioral therapy funded by the Regional Center. He has been receiving this therapy since shortly after his diagnosis and basically it is the one thing we've done that has made the most marked improvement in his life. That sounds pretty extreme, but if you knew anything about his behavior, demeanor, and communication skills before ABA, then you would realize what a game-changer it really is. These therapists have lovingly worked with him anywhere from 3-5 times per week over the past two years. 


They worked very hard. We worked very hard. Truman worked the hardest of all.

These therapists have been welcomed into our home in the most intimate way. They really helped us learn how to more effectively parent a spectrum child. They helped us understand what he was trying to say to us with his maladaptive behaviors. They showed that there was hope for his future. They showed us there was hope for our present, too. Pretty much, they saved our family.


The work they have done means everything to us.


And now I am told it is all going away.


The meeting I went to yesterday included Truman's Case Supervisor, his Service Coordinator from Regional Center as well as their Autism Specialist...oh yah, and me.  I requested the meeting because I was not happy with the proposed reduction in service hours for his ABA therapy. They wanted to reduce from 6 hours per week down to 4. They also wanted to have me take over running the sessions.


Basically, we're being cut off.


Just like that, BOOM! No warning, no consideration of where Truman is in his process and development, where he is in his behavior right now, where we are as a family unit. Just some arbitrary timeline created by the state saying "Tick-tock, Lady...your two years are up!"


Well, suffice it to say, I am not pleased with this prospect. I am not satisfied that this is a good solution for Truman's care and life management. And as a Regional Center client, he is entitled to certain protections and services under the Lanterman Act. (If you're not familiar with this, it's basically a California law that protects the rights of people with certain developmental disabilities so that they can choose to live as normal a life as possible. Like, in a house with their family instead of in some state-run institution - which was the common practice not so long ago. Incidentally, it is a great cost-saving measure by the state to have these people cared for in their own homes.) So, considering all those things and also coming to the realization that I need more help and support than I currently have, I am working on getting IHSS for Truman.


That opens a whole new bag of worms. Apparently this is a somewhat laborious process and it is confusing as well as a bit invasive. For us the process is complicated by the fact that I already receive SSI for my disability benefits. I keep saying that I wish we had someone that could come into our household and like, I don't know... trouble-shoot it. You know...look at all our possible options for support and intervention and basically coordinate the solutions. Like say, a social worker...duh.  


So, now one is entering the picture. Unfortunately, I have heard nothing good about the social worker that has been assigned to us, and after the bumbling and incoherent 15 minute conversation I had with her yesterday, I can see why. I am fearful that we won't qualify, or that it will be a minimal benefit. I am also worried that the process will take so long I won't be able to hold out.


My surgery is going to happen whether this process succeeds or not, but the prospect of facing my recovery without this additional support is absolutely overwhelming. I feel scared, incompetent, out-of-control, and more than a little depressed.


But to quote Louis Wu from Ringworld by Larry Niven, "You're going to have to get over this sometime. Why not now?" 


It seems like a simple platitude, but it actually is true. To put it in God's language it goes something like this:


"Therefore I tell you, do not be anxious about your own life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food, and the body more than clothing? Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? And which of you by being anxious can add a single hour to his span of life? And why are you anxious about clothing? Consider the lilies of the field, how they grow: they neither toil nor spin, yet I tell you, not even Solomon in all his glory was arrayed as one of these. But if God so clothes the grass of the field, which is today is alive and tomorrow thrown into the oven, will he not much more clothe you, O you of little faith? Therefore, do not be anxious saying 'What shall we eat? or 'What shall we drink?' or 'What shall we wear?' For the Gentiles seek after all these things, and your heavenly Father knows you need them all. But seek first the kingdom of God and his righteousness and all these things will be added to you.Therefore, do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is it's own trouble." (Matthew 6: 25-34)

Okay, let's all take a deep breath together...come on...tummies big! And shhhhhhhhh.
And one more....shhhhhhhhhhh.
And...last one...shhhhhhhhhhhh.


Feeling better yet? Yah, me too.

Now...do you guys want some good news? I know I sure could use it.


Our request for Truman's intra-district transfer was successful so he will be able to go back to Frazier for Kindergarten. This means a lot to us because he is already so familiar with the campus and staff and also because several of his neurotypical peers with whom he was so bonded will likely be in his class again. Plus it means I will be working with an AWESOME site administrator to create Truman's program instead of a terrible, horrible, no-good, very bad administrator. So that is one giant check mark off my to-do list...aaaaaahhhhhhh.

It's a big list, but tell me... don't you think he is worth it?

I do.


Grace & Peace, 


-Hannah

Pain and advocacy

Today I woke up (as I have most mornings over the past few months) in a lot of pain. I would say that I've gotten used to it, but the funny thing about pain is...you never really get used to it. I once thought it would be like owning a cat in a tiny apartment. Sooner or later, you stop smelling the litter box.

But it's not like that. In fact, it's almost the opposite. The longer the pain goes on, the more intensely you feel it. The more fatigued you are, the less able you are to cope with the pain. And believe me...I am fatigued.

I feel as though everything is happening at once. I am being called upon to advocate in pretty much every single area of my life. I'll try to break it down for you as best I can.

1. My health...You guys know about my proposed surgery and the ramifications of that procedure. If you missed that one, read about it here. Well, I have my consult with the reconstructive surgeon tomorrow morning and I have to be prepared to voice my concerns and questions, which are many. How did I prepare for this? By talking out my anxieties with my therapist and by arranging to bring a support person with me to the appointment. It's always a good idea to have an extra set of ears when you are getting information like this.

2. Truman's home behavioral therapy program... I just got the news last week that they are reducing his hours by one third. Not cool. Especially considering his recent spikes in behaviors and the transition of moving into a new house. Really not cool. And the reason behind this? Well, apparently I am such a "model parent" that they feel I should be running the sessions by myself and that he doesn't need the number of sessions per week he once did. Basically, I've worked so hard at implementing the program that now they feel I can handle it on my own. The problem with this is, that I really CANNOT handle it on my own. I'm freaking out. I'm exhausted, and angry, and frustrated, and scared that Truman's behavior will endanger and/or injure one or the both of us. So I pretty much feel as though I am being punished for being effective. Sucks.

3. Truman's schooling...The new school year begins on August 29th and we STILL don't know where he is going. Yep - still. I keep calling people and speaking with people (his teacher, his former principal, the district office, etc.) and everyone tells me a different story. The teacher says it's up to the district, the principal says it's up to the Director of Special Education, the Director of Special Education says it's up to the principals, the district office says it's up to the IEP team, the IEP team says it's up to the district office and on and on and on. And Truman is a giant hot potato again. Aaargh!!!

4. Our financial support... I have been on federal disability (SSI) since 2006 due to the ravages of cancer and all the myriad treatments that helped save my life. I have been unable to work in all that time. As I began to feel stronger and healthier after losing weight, I decided to try to go back to work. I started a VERY part-time job doing some light office work for a family business. I began in January, but by mid-May I was really struggling with pain. I was having a big resurgence of the lymphedema that is the main source of the pain I experience. I worked a few hours off and on in June and then that was it. I couldn't do any more. This is upsetting and disappointing on many levels. I was excited at the prospect of re-joining the workforce. It was a relief to have a little more income. I felt productive, creative, social, and needed. And then I felt betrayed by the shortcomings of my body. As much as I want to go back to work, I find myself completely unable. DIS-abled in the truest sense of the world. But a few days ago I got a scary letter indicating my disability is up for review. It's basically like applying all over again. I have to fill out reams of paperwork demonstrating the level of my injury and medical problems. The timing is absolutely brilliant. Here I am getting ready to have a major surgery and they're talking about taking away my benefits. Awesome. Could I be any more freaked out?

5.  Truman's auxiliary support... We receive respite care sponsored by the Regional Center for Truman, but his respite care provider is out of the country for the entire month. Also, with his increase in behaviors, my increase in pain and decrease in function, and the change in our housing situation...well, let's just say our needs have changed. Greatly. I feel completely overwhelmed sometimes...okay, most times. I am actively seeking IHSS (In-Home Supportive Services) as well as Protective Supervision for Truman, which would help us to pay for some additional support in the home. But this, as with any bureaucracy, requires an immense amount of paperwork, phone calls, red tape, and WAITING to get lined up. I am told it is worth the trouble in the amount of relief the family receives, but at this point I am having a hard time seeing the up-side. Right now it just looks like a lot more work on an already over-full duty roster.

So those are the highlights. There are other issues of course. Trying to exercise and get enough protein. The battle of the vitamins. Trying to go through boxes of stuff to prepare for our garage sale. Paying bills and keeping a budget. Dishes. Laundry. Dust bunnies. You know...LIFE.

All of this is what I am dealing with right now. Is it any wonder my meds aren't really helping? They say stress can cause pain and pain can cause stress, so I think I am basically caught up in an endless cycle of pain and stress.

Ouroborus, anyone?

Sorry if any of this bums you out. I end this post thinking of Ecclesiastes, Job, and even a little bit of Revelation. Maybe tomorrow I'll be thinking of Psalms.

I can hope, right?

Grace & Peace...

Hannah

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?