Forms, surveys, questionnaires, etc...

Okay, I have just spent about 5 hours filling out and scanning and copying various and sundry forms, questionnaires, instruments, surveys etc. All of this for Truman's different therapies, doctors, and even a study we're participating in at UCSD. The result...irritation, exhaustion, headache, writer's cramp, and the biggest bummer of all is the overwhelming reminder of exactly how many challenges our little Monkey faces every moment of every day.

I mean, you go through the days and weeks with your child marveling as they develop new skills and relish every minute advancement...and then someones asks you whether you agree with the statement: "I find myself giving up more of my life to meet my children's needs than I ever expected."

Do I Strongly Agree, Agree...am I Not Sure or do I Disagree...or even Strongly Disagree?

Well, let's be honest here. Doesn't every parent have to give up a lot to meet their children's needs? That's sorta the price you pay to foster the next generation of humans. I feel it is our "bounden duty" so to speak, to do everything in our power to love, support, educate, nurture, discipline, and encourage our kids. So, yah, I have given up a lot...but I have received SO much more than I ever expected as well.

Where is the question that asks me about how much I love Truman's snuggles? Or how my heart warms every time he happily announces "Momma, you came back!" when I pick him up from a visit with Umpah? How do you quantify the blessing of spontaneous smooches or seeing him write his name for the first time?

I guess my real question is - Why do these questionnaires always focus on the negative?

One of the forms I had to fill out is called the CES-D which stands for the Center for Epidemiologic Studies Depression Scale. It basically asks you how often during the past week you felt a certain way. Some sample questions include:

• I felt that I was just as good as other people.
• I felt that everything I did was an effort.
• I felt fearful.
• I felt that people disliked me.
• I was bothered by things that usually don't bother me.

Well, after reading all that and thinking back and trying to count all the times I might have felt those things...if I wasn't depressed before, I sure am now! I'm just kidding, but I'm sure you get my point.

I guess the part I find frustrating is that there doesn't seem to be an opportunity to brag about all the wonderful things you LOVE about your child! Where is the place for pride and excitement and wonder and joy and curiosity and fascination and tenderness and humor?!?!?!?! As many difficulties that Truman has, and as many battles our family faces, there are myriad more wonderful blessings that he brings into our world! I believe now and always will that Truman was created for a purpose just like every other soul on Earth. 

Some days I think that purpose was to save my life.

Thanks, Monkey-doodle...I love you!!!

Grace & Peace

-Hannah

Advocacy at work

I thought you all might like to see an example of what effective advocacy can do in a challenging situation. If you've been following my previous posts, you'll remember that I have had a really hard time dealing with the Social Service department in charge of IHSS. I have struggled in particular with the Social Worker they assigned to our case.

On Friday, I finally got fed up and fired up and managed to find the time, energy, and focus to write a letter to the aforementioned incompetent Social Worker's superior.

We put it in the mail on Saturday.

He called me the next Tuesday morning.

BOOM!

He is expediting our case. He carefully explained exactly what forms I need to send in to him. The best part is that as soon as he receives those documents, he is re-assigning us to another worker.

Uhm, who's awesome?

Yah, that's right - me.

Now, this isn't just a co-incidence, but rather a result of years and years of honing my craft of letter-writing, campaigning, summarizing needs, recalling important details, casually stating scary legal info and other sneaky techniques that are almost guaranteed to produce immediate action.

This action may not necessarily be positive, or go in your favor right away, but the important thing in advocacy, especially when dealing with large bureaucratic institutions is to get and keep things moving. There is nothing more important than momentum in this process. A body at rest tends to stay at rest and thus usually ends up buried at the bottom of people's in-box. The squeaky wheel gets the grease and all that. Let's see, any other cliche's I can throw in here?

Okay so, I'm not like some stingy chef who won't share her recipes. I want you all to have a chance to succeed in battling whatever challenges you come across. So I've edited my letter to remove the identifying information and I'm attaching it here in the hopes that it will spark some ideas for you.

High Mucky-Muck

1234 Office Building

Anytown, ST 00000

September 24, 2011

Hello Mr. Mucky-Muck,

My name is Momma Bear. My son Monkey Bear has been assigned to Ms. Grumpy Burnout for assessment for IHSS and Protective Supervision. I am writing to you to express some concerns I have over this placement.

First, a little background on our situation:

I am currently on SSA disability due to ramifications of cancer treatments, lymphedema, chronic pain, and radiation damage. My son Monkey has Autism, Sensory Processing Disorder, and Pica. We are applying for IHSS and Protective Supervision because his care needs have grown beyond what I can personally provide. I am overwhelmed physically, emotionally, and mentally by the demands of his care. Basically the situation is that we have one disabled person caring for another disabled person.

Because of the emergent nature of our situation, I feel Ms. Burnout to be under-qualified to handle the complexity of our family's needs for the following reasons:

•         She was more than two hours late to our scheduled interview.

•         She was unprepared for our meeting and gave no reason for her tardiness besides simply “needing more time to prepare all the paperwork.”

•         She is hard to reach by phone and very difficult to communicate with. I didn't feel she understood my concerns and  when we were discussing my family's needs, I felt she was leading me to tell her what would make her job simpler and easier, rather than what were the true facts of our circumstances.

•         During our first phone conversation she actually suggested I say certain things that were not true in order to guarantee qualification. I told her that those were not the facts of our case and she seemed confused by my un-willingness to go along with her suggestions.

•         At our intake interview, she thrust pages and pages of forms and documentation at me with little explanation, as well as much griping and complaining about all the unnecessary paperwork. She honestly disturbed me with her dour and unprofessional nature.

•         The intake paperwork and information packet was missing several pages, duplicated other pages, and not explained in any way.

•         Since the intake interview she has had no further contact or provided assistance to us. She has not even checked in on our progress.

Because of the above listed concerns, I would request an alternative placement for our case #XX-XXXXXXX to a different social worker. I feel our needs and the complex nature of our family situation warrants someone with a greater degree of professionalism, compassion, and skill. We are in an emergent situation as I will have the first stage of my reconstructive surgery on October 5, 2011 and the major operation will follow a few months later. We will definitely need intensive support during my recovery and that is a deadline that is quickly approaching. I'm sure you have other people on your staff better suited to the needs of our case and that they can better expedite our intake and assessment.

I greatly appreciate your prompt attention to this issue. I look forward to speaking with you at your earliest convenience. I can be reached on my cell phone at XXX-XXX-XXXX, by email MOMMABEAR@email.com , or by mail at 9876 Random Street, Littletown, ST, 00000.

Kind regards,

Momma Bear

Also, here are few recommendations for books and websites that have helped me become a better advocate.

1.  From Emotion To Advocacy


2.  Special Education Law


3.  Autism: Asserting Your Child's Right to a Special Education


4.  http://fetaweb.org/
    This site is great for everything to do with advocating for your child.

5.  http://www.wrightslaw.com/
    This is the main go-to for everything about Special Education Law.

6.  http://www.disabilityscoop.com/
    This is an awesome clearing house for all the current news affecting the disabled community.

7.  http://www.myautismteam.com/parents
    I love the way this site makes it easy to network with other parents and find local services and supports.

If you ever have need for any of these resources, then know that many many many parents are battling with you. I wish you well in all your endeavors and pray for your success.

Grace & Peace,

-Hannah

Back-to-school...Finally!

So the month is almost over and this is my first post in September. You may be wondering why (or maybe you're not the curious type) so I'll try to fill you in as best I can.

Firstly, I have been having some pretty major pain management difficulties. Like, major. Like, spending-all-my-spare-time-in-bed-yet-not-sleeping-at-all kinda pain. So that has basically taken away any ability to do extraneous projects.

Then, there are all the struggles with various and sundry bureaucratic entities mentioned in my last post.

Plus we had another IEP to try to deal with Truman's transition onto campus in the mornings...can I just say EPIC FAIL!!!

And then, there is Truman...ah, my dear little monkey...is he really almost 6 years old? How did we get here so fast?

Truman went back to school (YAY) but this time as a KINDERGARTENER (DOUBLE YAY!!!) which is great and means that I have more opportunities to rest during the day.

Here he is on the first day of school. Doesn't he look contemplative?

The problem is that he has concurrently had a HUGE spike in behaviors. The most disruptive and disturbing of these has been his lack of consistent sleep.

We've begun logging his daily activities and behaviors and were shocked when we discovered that out of the last 40 days, he has had abnormal sleeping patterns at least 14 times. That doesn't sound like much, but when I tell you that means he's up for as much as 4 hours at a time (and thus so are we) then what do you think?

It affects the whole family. Because when he is awake, he's not just staring at the ceiling or twiddling his thumbs. Nope. He is manic, running around, jumping on the bed, demanding to watch a movie, throwing his toys, sneaking into the kitchen to get food, stimming in every way imaginable, scripting (usually at a very loud volume) crying, hitting, just generally going nuts. We have been embattled and stressed and exhausted for months now and we are trying everything in our toolkit to address this issue.

This means we are exposing him to as much variety in his sensory diet as possible, new heavy work routines throughout the day, a snack with protein and a dose of melatonin near bedtime, a weighted blanket and fan at night, routine, routine, routine...

But nothing seems to make much of a difference.

The poor guy is just exhausted...

All of this has lead us to an extremely difficult choice.

We are considering medication for our little guy.

I have no words for the amount of conflict and stress this has brought into my mind. When we first had medication suggested to us by some of Truman's doctors, it was a no-brainer. I mean, there was NO way I was going to pump chemicals into my little baby. Not if it was just to make my life easier. Nope. Not gonna happen.

I was scared of the side effects. I was worried he would stop growing. I thought maybe it would permanently alter his brain chemistry. I was thinking of all the articles by adults with Autism who HATED the fact that their parents had medicated them as kids. I was confused as to how we would even be able to get him to take the meds in the first place. I was just totally against it, without even a glimmer of consideration.

But he was a LOT younger then. And honestly, his behavior was a LOT more manageable, both for me and for him.

Now, I see how much he is struggling. I see how much Dave and I are struggling. And after a semi honked at me for fading into it's lane as I was driving Truman home from his Occupational Therapy, I realized that something had to give. Friends don't let friends drive sleepy.

I can't function without sleep, and neither can Truman. I am not going to put our lives at risk because I'm afraid of the possible damaging ramifications of medication. He is older now, and according to the growth charts at his last physical, the size of an average 9 year old (!!!) so I'm willing to at least look in to the options we have for pharmacological intervention.

It's always a guessing game when you're trying to make decisions about your children. You do the best you can with what you know at the time. The rest you have to lay down at God's feet. I take great comfort in knowing that the only person who is looking out for Truman more carefully and diligently than me is God, so that calms me down quite a bit.

Be still before the LORD and wait patiently for him;
fret not yourself over the one who prospers in his way,
over the man who carries out evil devices! Psalms 37:7

I love this verse from Psalms...it pretty much sums up how we are called to rely on God to care for our needs, worries, concerns and burdens. And truthfully, my reliance on my faith, my Lord, my family, friends, and fellow believers has been the only thing that has gotten me through the past 6 years.

Dave and I spend all our emotional, mental, spiritual, financial, and physical resources on making sure Truman becomes the best version of himself possible. We will continue to do that, but hopefully we will have a little more help in the process going forward.

In the meantime, there's always naps :-))

Grace & Peace,

-Hannah

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?

Over-sharing...

If you ask any of my friends (my close ones, anyway) they will tell you that I have a tendency to over-share. This is known as TMI (too much information) in my mother's parlance. I don't know why I have this particular foible, but I am not in denial about this. I truly don't have much of a filter. Maybe it comes from a childhood with too many secrets, or an exceptionally gregarious family. Maybe it is simply because I have, according to my dear friend Ryan, a "Billboard Personality"...he describes it like a giant picture of my face and appropriate jazz hands with huge block letters that just say "HI! I'M HANNAH!!!"

All those things are true. But if is this a good or a bad thing, honestly I can't tell. The reason I decided to write this post is because I am having an internal struggle over what and how much to share on this blog about my medical issues. It's a sensitive subject for most people, but I have always been pretty open about my situation. However - it's one thing to be chatting up your girlfriends after church or at a dinner party and reveal some painful details about your personal situation and something all-together different to lay it all out in black & white.

So I'll start slowly and see where we end up.

Most of you know that I had cancer. Some of you might even know what kind I had or (vaguely) what parts of my body were affected. A very few of you have even heard some of the grisly details of precisely how damaged I became through the disease process. Sadly, there are even some of you who have personally witnessed  and helped me care for my wounds. 

But I would venture to say that no one actually understands what cancer has really done to me. In my body, in my mind, my spirit, my emotions...cancer has simply run amok. (Yah, that's really how you spell that. I checked. Weird, huh?) So I guess in my attempt to process what has happened and continues to happen to me I will tend to over-share.

Oh well. If you're easily offended, I guess just don't read the blog.

The impetus for this entry was a reaction to an appointment I had with my Gyn-Onc today. (That's an abbreviation for Gynecologic Oncologist.) His name is Dr. Harrison and while he did not do my actual surgery, he has been in charge of my after-care for the past 5 years. He and his nurse Cathy have been with me through thick and thin and they have helped me to manage my pain and my long-term care with utmost compassion and dedication. In other words...they're awesome!

Well at this appointment, which was supposed to be just my regular 6-month follow-up, I actually broke down and tearfully explained my frustration with the current state of my anatomy. I have had a huge resurgence of pain and swelling in the past few months and I have been fighting daily to manage it. I understand that the lymphedema will be a chronic condition I will have to control for the rest of my life, but the pain and dysfunction was really getting to me.

One of the reasons I elected to have bariatric surgery was in the hope that losing weight would decrease the lymphedema and also help bring the pain under better control. Well, I'm only about 20 pounds from my goal weight and I am not seeing the changes I was hoping for (and frankly, expecting.) The goal was to get enough weight off to safely have reconstructive surgery on the tissues that were damaged by radiation and surgery. But honestly, in my heart of hearts, I hoped that just losing the weight would resolve things enough that I wouldn't need the surgery.

Now I know that is not the case.

So, this is what I am facing.

A Radical Vulvectomy and Abdominoplasty with Gracilis Myocutaneous Flaps.

It looks like this:

Click here if you're interested in the medical details...

I'm not really sure how to feel about that.

If you've never had surgery, especially major elective surgery, you probably are having a hard time relating to this conundrum. Before I had my first surgery I always thought...what's the big deal? Why are they nervous? They knock you out, give you the good drugs...you even get a few days all to yourself to vege out while you recover. No biggie!

WRONG!!!

Surgery is a big deal. It's scary to be unconscious and under the control of total strangers. It's scary to have parts of your body manipulated, removed, discarded, never to be seen again. It's REALLY scary to think that you won't heal properly or in time or that you'll have a complication like some horrible infection or tissue necrosis or something. It is absolutely mortifying to think that you might not make it back home to take care of your baby and your husband.

Most of all, it is terrifying to think that you might go through all that and then have the surgery not work at all. To think that you might still have the pain and dysfunction anyway.

So that's why I felt compelled to write about it.  I'm scared. I have to consider and plan for this reconstruction and my weeks of recovery and I'm kinda pissed that I even need it in the first place.

Come on, God! I thought I was supposed to be healed already! What happened to Your promise? When will my healing really be complete? I don't want to be impatient or even seem ungrateful, but I am seriously OVER this!!! 

I think it's time to bust out my old treatment mantra...Lord, I believe. Help my unbelief. (Mark 9:24)

I know that He is with me through all of this. I'm just tired. And scared. And I feel alone dealing with all this. No one my age should have to handle this much crap. It's just not right. 

But as I said before...God is good. All the time. His provision is ALWAYS sufficient. His timing is mysterious and His ways are not our ways. But we got through this before (more than once!) so I know we can do it again.

Grace & Peace,

-Hannah

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