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?

Housewarming

To quote one of my all-time favorite movies (Frank Capra's It's A Wonderful Life): "Bread - that this house may never know hunger. Salt - that life may always have flavor. And wine - that joy and prosperity may reign forever! Enter the LaFrenz castle!!!"

So, I know a housewarming party is a somewhat rare occurrence these days. Maybe it's the modern era. Maybe it's the casual California lifestyle. Maybe it's our socio-economic status. Who knows? It's just not something I come across very often. But I love the idea of welcoming everyone into a new home. For someone who expresses the gift of hospitality as passionately as I do, it is somewhat expected. But for Dave and I this event held a particular significance.

Most housewarmings take place when someone purchases their home. Dave and I happen to be renting our current house. We still felt the desire to have a housewarming party. Perhaps if you knew a little bit more about our recent past circumstance, you would understand why.

Dave and I were married on April 24, 2004 and soon after moved to the (accursed) high desert because that's where he got his first teaching job in California. It was a wonderful time for us, even with all the crazy challenges of living in a charming (read: decrepit) old cabin style house in the insane climate of Apple Valley. We built a pleasant routine around his unusual schedule. Because of the un-holy weather of that region, school started and ended early in the day. This meant he was usually home in time for us to run errands in the afternoon, see a matinee, or even (our favorite) take a nap before making dinner. It was just him, me, and Warren

 (my Australian Shepherd mix who was my constant companion and boogie-man repellant.) We did lots of little home improvement projects and yard work type stuff. We really made an effort to make that place our own. And it was...warts and all. I can honestly say those first few months of our marriage were one of the happiest times of my life. They call it the "honeymoon" period for a reason.

But the abbreviation of that idyllic time was shattered not by the typical growing pains of a new relationship, but instead by the stress of a surprise pregnancy which included a very painful medical mystery. By the time we reached our first anniversary I was finishing up my first trimester and struggling with a painful mass that no one could diagnose. Over the next several months, as my son grew healthy and strong inside me, so did the cancerous tumor that was threatening my life.

You see, whether coincidence or fate, the fact that the cancer happened when and how it did was absolutely key to my effective and aggressive treatment and recovery. It may sound strange, but I am thankful that I got cancer when I was pregnant. If I hadn't had Truman to worry about, I'm convinced I would not have found the tumor as soon as I did and I DEFINITELY would not have sought treatment as early or assertively as I did. I am convinced that those circumstances were vital to my survival.

So, this leads me to what I originally discussed in this post which is...our living situation.

After months of scans, tests, research and switching doctors, I finally had a biopsy scheduled. At 30 weeks pregnant I was admitted to Loma Linda hospital for an excisional biopsy of the grapefruit sized mass that had taken over much of my mons and groin. This was late August 2005. Truman was due in late October.

Meanwhile, back at the ranch...Zack (my brother) and his wife Hillary were planning to purchase a home in Hemet. He was working as a finish carpenter at the time and traveled all over Southern California to build new houses. Hemet was as good a place as any to commute from and the houses were pretty reasonable in price which is why they wanted to invest there. Several members of my Mom's side of the family live there and at the time it was booming from a real estate perspective. This town is about 45 minutes from where my parents and much of my Dad's side of the family lived. Apple Valley is about 90 minutes away (without traffic!) Because I was now expecting our first child, and I was unable to work due to the pain caused by the massive tumor in my groin, and because I was uncertain of what my medical status/treatment protocol would be once Truman was born, Dave and I made the decision to move in with Zack & Hillary after I recovered from my first surgery. We were sure we would need the support of family close by. It was a difficult choice to decide to share a household with another family, but it was totally necessary given the circumstances. In fact, that one decision was the keystone to everything that comprised my ultimately successful battle against cancer.

But it was hard.

We shared that house with Zack & Hillary and their twin sons for over two years. And BOY howdy, were they incredibly supportive. In fact, I know we would not have gotten through that period without their help. My parents also came often to help, as did my myriad of Aunts, Uncles, cousins and friends galore. The really big deal was when Gloria (my younger sister) literally dropped her entire life to become my and Truman's full-time caregiver. That is a sacrifice that deserves a whole separate entry to properly address. So yes, we had a lot of help.

But it was still hard.

So what happened after those two years? Well two main things.
1. Dave was not offered a contract to return to the Hemet district after teaching there for two years.
2.  The economy took a nose-dive, with construction leading the way, which meant Zack was now out of work.

End result...we all had to move out of the very large and expensive house. Zack & Hillary moved back to a rental house in Fallbrook and Dave & I moved in with my parents. Just for a few weeks or months at the most, I thought. Just until Dave could find a new teaching job. Or any job for that matter.

Well, after months and months of diligent work searching for a new teaching job, Dave realized he just was not destined for the classroom as his long-term career. So then the real battle began. Dave's vocational crisis just happened to coincide with the beginning of the "Great Recession" and so for literally YEARS he searched, interviewed, networked, odd-jobbed, monster.com-ed, resume wizard-ed, pestered and PRAYED his way into a new career. He applied, and applied, and applied. And he interviewed, and interviewed, and interviewed.  He even drove 6 hours to go to an interview somewhere in the central valley once...just to find a job. He WORKED at finding work like no one I have ever seen.

Oh, and PS...did I mention that a little while after we moved in with my folks, Truman was diagnosed with Autism? No...oh, so there's that, too.

Dave finally found his calling in mid-2009 when he tested for the California Department of Motor Vehicles. He knew he wanted to work as a License Examiner, but there were never any openings at the local offices. So when he finally got the opportunity in February of 2010 and was hired by the DMV in Sonora he jumped at the chance to work there. In case you (like me) are deficient in geography you should know that Sonora is in Gold Country - about a 9 or 10 hour drive north of Fallbrook. So yes, my husband took a permanent intermittent job (basically a temp position) hundreds of miles away because he KNEW it was the right career path for him. He drove up every Sunday after church, worked all week long and then drove back home after work - usually (thanks to furloughs) on Thursday night. This meant he often didn't get home until 1:00 or 2:00 in the morning. He literally put thousands and thousands of miles on our little 1993 Corolla which I am thankful held together just long enough for him to get his job down south.

He did that commute for over 9 months, and then he was finally blessed with a FULL-TIME PERMANENT position. Praise God!!! The only down-side...it wasn't in San Diego. It was in Paso Robles, about a 4 hour drive north of Fallbrook. He was getting closer, but we were still supporting two households and so could not afford our own place at that time. That was November of last year, right after I had my bariatric surgery. Which meant I was recovering from major surgery without the help of my husband 5 days out of the week. Thank GOD for the help of my family!!!

So that is how what was supposed to be a few weeks or months with my parents turned in to over three and a half years. Yep...years.

Which I'm sure must've felt even longer for my wonderfully hospitable parents (especially on Saturday morning when Truman was making a racket and we ALL desperately wanted to sleep in!)

So, now you know why having a housewarming for our little rental house was such a VERY BIG DEAL to us.  Please enjoy some pics from the event and know how grateful we are to all who made the time and effort to be there.

We hope you all feel welcome here for as long as we call it home.

Grace & Peace...

-Hannah, Dave & Truman LaFrenz

Welcome and Hello!!!

Let's start by explaining the title...

Advocacy is something I stumbled into through a series of bizarre and challenging circumstances, beginning with a cancer diagnosis that took place when I was pregnant with my son. I had, at the time, no idea exactly how difficult it can be to maneuver in our medical and legal systems, but that lesson was learned VERY quickly. I spent the majority of my first (and as it turns out, only) pregnancy just fighting to get appropriate treatment and an accurate diagnosis. I was robbed of a large portion of the joyful experience of gestation by the physical and emotional pain of a medical crisis. And truthfully, though I was nominally performing self-advocacy at that point, I really began advocating for my child at that very first appointment 11 weeks in. 

No matter who or what you are advocating for, I think it is helpful to think of the subject as your own child or yourself AS a child. This really brings to perspective the fragile and vulnerable nature of someone who is in a medical, social, emotional, spiritual, financial or educational crisis. The details will be very different, but powerful and effective advocacy in any field utilizes many of the same techniques and attitudes. I have a great deal of experience working with (and sometimes against) various bureaucratic institutions in order to survive and thrive in our modern age. 

Truman (my son) is 5 years old and heading off to Kindergarten in the fall and I continue to advocate for him daily. He has Autism so we have had our work cut out for us over the years just getting him appropriate services and interventions.

The stage IV liposarcoma that was supposed to kill me has been gone since 2006, but I'm still here :-)) After almost 5 years of remission,  I am only a few months away from my very own "C" word (CURED!!!)

...and yet, because of the long-term ramifications of my own medical treatments I still have issues for which I need to advocate.

 My hope with this blog is to share what I have learned (and am STILL learning) in my experiences advocating for myself and my family so that someone,

somewhere will reap the benefit of my hard-fought battle-scars. 

Here are just a few highlights of challenges we have faced as a family:

* Cancer

* High-risk Pregnancy

* Infant Feeding Difficulties (Lactation Challenges)

* Vocational & Employment Challenges

* Family Separation

* Financial Issues

* Housing Issues

* Obesity & Bariatric Surgery

* Chronic Lymphedema

* Chronic Pain Management

* Addiction & Chemical Dependancy

* Developmental Delay 

* Psycho-educational Assessments

* Autism

Quite a list, I know. And would you believe all this has happened since 2005? What a way to start a marriage and family! But the important thing to note at this point is that we are STILL HERE!!! Dave and I are still together and happy, we are still faithful and more in love with God (and each other) than ever, and we are truly moving into a chapter of prosperity and blessing right now. God is good, His provision is always sufficient, His timing is mysterious, and His ways are not always our ways...but by leaning on Him and fellow believers we have more than survived - we are THRIVING!!!

So, that's the "Advocate" part of the title anyway...I'll get to the other two words in another post.
Thanks for taking the time to read this and I look forward to growing together with you all...

Peace & Love,

-Hannah