Disabled? Handicapped? Mixed Emotions...

So, last Thursday, I finally gave in and gave my doctor my application for a handicap placard. She happily completed her portion of the form on the spot, and I took the form to my local DMV the next day and got my placard. I have friends and family who have been pushing me to get one for quite awhile, because I get so fatigued from walking and it increases my chronic leg and foot pain. I had (and have) mixed emotions about this major step in my journey. As a social worker, I am well aware of the vast spectrum of disabilities and limited resources. So, in my mind, there are a limited number of handicapped parking spots, so who am I to park in one of those spots when there is potentially someone more disabled than I, someone more "worthy" than I of having that spot? What about people who are actually in wheelchairs and they need the extra space that handicapped parking provides? 

On the other hand, I know how tired am as the day goes on. No. Correction: I know how exhausted I am as the day goes on. I know when I have to go to the mall to run an errand, one of the first things I think of is how hard it's going to be to find a parking spot and how I'll feel completely done before I even make it into the mall entrance, let alone how I'll feel by the time I get to the store I need to go to, and then how I'll be when I get back to the car. I also know that a simple trip to Target or other big department stores also leaves me tired and in significant pain. But ultimately, I know that I need to take care of myself or I won't be able to take care of anyone else. I need to preserve what energy I have for the things that matter most. And, I need to take advantage of every opportunity and short-cut I can take to get the most out of my days because I know that more often than not, it takes all that I have to make it through an average day. 

I've just recently began blogging about my journey with chronic pain. You can read more about my journey here. 

If you are eligible for a handicapped placard, you can get the form online by going to the DMV website for your state. 

Summer of Color 2013

I can't believe summer is only 4 weeks away! Time flies!!! I'm so excited to participating in my sweet friend, Kristen's Summer of Color party again this year. I created the piece above, 2 years ago as part of her Summer of Color blog event. YOU can join in the fun, too! There are LOTS of inspiring ways to create in whichever way you choose. Even if you don't think you are an "artist" or if you don't think you are "crafty". Seriously EVERYONE can join in. Whether you choose to participate through photography, writing, art journalling, making cards, clay, jewelry...whatever YOU want to do. So, read all about it and start thinking about your projects. All the details are right here.

Puppy Love {Introducing Barkley the Goldendoodle}

This little guy joined our family in December and quickly stole our hearts! As I shared before, we lost our chocolate lab back in July. Our home and my heart felt so empty with him gone. While I knew we could never replace our beloved Hana, I also knew another dog could bring some joy into our home; joy I desperately needed because I was still pretty depressed after all the grief I endured. 

Given Taylor's severe dog allergies and asthma, I knew another lab was out of the question. I've always loved Golden Retrievers, but with their long hair, that would also be an allergy nightmare. A friend suggested we explore getting a Goldendoodle. A Goldendoodle is a Golden Retriever/Poodle mix. So, I did some research. These dogs have the temperaments of Golden Retrievers and the intelligence of both breeds. I never knew poodles are so smart! They are highly trainable and are great dogs for people with allergies because the poodle genes make them hypoallergenic. 

In my research I learned that an F1B Goldendoodle is the offspring of a Goldendoodle mixed with a poodle. Thus, the puppy is 3/4 poodle 1/4 Golden Retriever. Don't get stuck on the math (not my strong suit). My point is that the F1B is recommended for families with severe dog allergies. So, an F1B was the right choice for us! 

We got him from a family breeder a couple of hours from our home. We got him a few weeks before Christmas and he was the best Christmas present EVER! He's 13 weeks old in all of these pictures. He weighed about 22 lbs when we got him at 11 weeks! He's a standard size Goldendoodle so he's going to be a big guy. Now, at 7 months, he weighs about 53 lbs! I love big dogs and I fully believe that big dogs can be lap dogs! Hana was a lap dog and Barkley is, too.  How could I deny couch cuddles to such a cutie?

Emerging from under my rock...

I'm feeling like I should rename this blog "Medical issues take over a Crafty Mom's Life".  I'm emerging from under my rock and doing a little more creating. I've been going through a lot lately, both physically and emotionally. Grab a cup or glass of your favorite drink and I'll update you on my medical stuff and then I'll update you on some fun artsy stuff.

I'm having severe, chronic pain and incredible fatigue. This has been going on for months (at it's worst). During my childhood, I had significant foot and leg pain and limited ability to stand or walk for extended lengths of time. I would tire easily when shopping. I was always at the end of the line on field trips working hard to keep up with my classmates. As I grew, I developed very high arches and "hammertoes" which means my toes all curled under. I have no idea how I worked as a cashier as a teenager, because I was in such incredible pain from standing and I would come home and literally collapse.

When I was about 11, I saw an orthopedic surgeon at The Hospital for Sick Children in Toronto. He quickly determined I would need surgery to correct my high arches, curled toes and misaligned heels. I had 3 separate surgeries at age 12, 15 and 17 to correct all of this. Each time, the surgeries were done on both feet simultaneously.Since my first surgery, I've worn custom orthotic inserts to help support my arches and alleviate pain.

Ultimately, I learned over time, the surgeon believed I had classic symptoms of Charcot- Marie -Tooth Disease (CMT). This is a genetic neuro-muscular disease that often presents with the symptoms I described. In the last 10 yrs there has been research done to identify the genes related to CMT.  I've gone through my life under the assumption that I have this disease and that I've just never been formally diagnosed.

The good news is, eventually in my 20's I began feeling reduced pain and symptoms. I became more active than I've ever been and became an avid hiker. While I still appeared to become more fatigued than my hiking mates, and took longer to recover, my CMT was practically a non-issue for me. That is, until about a year and half to 2 years ago.

I began twisting my ankle frequently. Nothing serious, and I would generally recover within a few hours or a day. My ankle would just turn over every now and then while I walked, resulting in a limp when injured. This began happening more frequently and became quite painful. I finally saw my primary doctor for this about a yr ago and as a result I had my inserts updated in hopes to resolve the issue. Well, it didn't. I began having a steady increase in symptoms over the next yr or so and I've experienced an aggressive progression in the last 6 months to a year. Recently, I've realized my body is misaligned in general. I have one leg longer than the other, my knee caps don't line up and their misalignment can't be explained by the differing lengths of my legs. As a result of this, I've been having back pain and hip pain. My right foot also points outward toward 2:00 if using a clock face as a guide. My right knee is somehow involved in all of this and I'm having knee pain. My 3 biggest issues at present are significant ankle pain, incredible nerve pain in both legs and feet, and horrible fatigue and poor endurance.

For the last few months, I've been feeling totally completely spent by 3:00 in the afternoon. As I've mentioned before, I'm a hospice social worker and I work from home doing charting and phone calls and then I visit my patients and their families in their homes. My health has been so poor recently that I've only been able to do the bare minimum work-wise, and this leaves me completely exhausted by 3:00pm and lying on the couch until bedtime. If I'm lucky I can catch a nap, and then it all continues the next day. This is a completely drastic change from who I was 2 or 3 years ago. I used to be very high energy, hardly able to sit still. I finally reached my breaking point last week. I had an appointment with a neurologist to pursue an actual diagnosis of CMT and get an appropriate treatment plan so I can function. He isn't convinced I have CMT and I have some follow up tests scheduled. While in his office, we realized I have muscle atrophy (muscle loss) in my right leg, which can certainly be contributing to my leg fatigue. So much so, that it's visible by just looking at it. In the meantime, my primary doctor has put me out on medical leave because I can't continue the way I have been. I just don't have the stamina and endurance to make it through the day and keep up with my workload. She's increased my medication for nerve pain, and hopefully the time off work will help me adjust to the side effects of dizziness and drowsiness.

Each day this week I've been feeling better and better. The scary thing is, I know I'm feeling better because I don't have the physical and emotional demands of work. I'm not exactly sure where that leaves me, but I'm trying to just take one day at a time while exploring my options. I'm nowhere near being 100% and pain, fatigue and limited endurance still play a major role in my days, but I'm better than I was a week ago.

Anyway, this has all taken it's toll on me physically and emotionally. CMT is a progressive disease, but somehow, when I was doing so well in my 20's, I guess I didn't think it was going to get any worse for me. Ironically, one of my best friend's has CMT and her CMT is very progressed. She is on disability because of her chronic pain and weakness and how it impacts her ability to function and complete simple tasks. In the late stages of the disease, the hands are affected and hand dexterity is greatly diminished. There are times in the last 2 years that I've looked at her and watched the progression of this horrible disease and thought "Is that my future?". Right now, I don't really know what the cause of all my symptoms is, and it's quite possible I have more than one condition or disease at play. I've had a work up for Rheumatoid Arthritis and although I've tested negative on bloodwork before, I've been referred to a rheumatologist. I also had the bloodwork repeated this week and am awaiting the results.

So...what's getting me through all of this? Aside from my wonderfully supportive husband and friends, ART! I've finally decided to force myself to create everyday because I KNOW how therapeutic art is for me. I KNOW art is my happy place. I used to feel so at peace and invigorated when I went hiking. I haven't laced up my hiking boots in almost 2 years. But I can still pick up a paintbrush and I can still go wild in my art journal. Yes, I need to take frequent breaks because I can't sit or stand for any significant amount of time. But, in mixed media art, I create so many layers that often breaks are needed to help the layers dry, or to figure out where to go next with my creation.

I've been doing a lot of art journaling but this is actually a page I created a year ago, just a few days after I lost my grandmother.  The quote is one of my favorites: 

Just when the caterpillar 

thought the world was over,

it became a 

butterfly...

Somehow, in the midst of my fatigue, I've made making art a priority and I was so frustrated by the state of my art room that I completely organized it and turned it into a space that I love to be in, and is (almost) totally functional! As I feel up to blogging, I'm hoping to share more of my journal pages, and share with you how I got started making art journaling one of my go-to pick-me-ups when I need to work through or escape the pressures of life. I'm a huge proponent of the therapeutic benefits of art making and journaling. I'd love to inspire you to grab a journal and a few favorite supplies and you to explore the process, too!

Getting a diagnosis of Sensory Processing Disorder

This is part 3 in a series I'm writing about our journey with Sensory Processing Disorder. You can read Part 1 and Part 2, here.

***This post was actually written last January. I've had it in draft and am just now getting around to posting it!***

As I discussed in my last post in this series, we've had issues navigating the bumpy road to an SPD diagnosis for Taylor. The primary reason is that Sensory Processing Disorder is not currently a recognized diagnosis, so health insurance companies will not cover occupational therapy (OT) for sensory issues. In many cases, SPD is accompanied by other diagnoses or delays such as autism or delay in motor skills or other developmental delays. In Taylor's case, she has met every milestone on target or early, she excels in every area at school, she is exceptionally well coordinated (in most areas) and very athletic. She is socially appropriate (in other words, she's not disruptive in her classroom, able to make eye contact, communicates appropriately and even advanced for her age) and displays a sense of humor and problem solving skills and social skills that are beyond her years.

So, while we're certainly thankful for all of these strengths, the result is that for her, SPD is a stand-alone diagnosis. When I compiled a list of Taylor's behaviors, and provided the completed SPD checklist from The Out of Sync Child to our pediatrician, I asked for a referral for an OT eval and we were seen at a local PT clinic. I live in an area where geriatrics is the main focus of health care and services, due to our population. While the OT we saw validated our concerns and agrees Taylor had many behaviors consistent with SPD, she recognized her own limitations in knowledge about SPD and referred us to another clinic for on-going OT. The referral for on-going OT was denied by our health insurance, going back to the reason that SPD is not recognized in the DSM.

I also think it's worth noting here, that the OT that completed the initial eval started going down the road of ADHD. SPD is often misdiagnosed as ADHD. Yes, Taylor is hyperactive (although I *really* hate that word!), and yes, Taylor has trouble focusing, BUT...her hyperactivity is related to her *need* for sensory input. She moves constantly as an attempt to fulfill her need for sensory stimulation. And, she can focus just fine as long as she's moving or chewing on something. In fact, she has almost no problems at school. She's able to get input in ways that are not disruptive to her class, her teachers adore her, and she's above grade level in every area. Her teachers completely scoffed at the idea that it was suggested she has ADHD.

Knowing that we desperately needed more guidance in managing Taylor's behaviors, we decided to pay out of pocket for OT at the recommended clinic. The OT we saw, came highly recommended by a dear friend who has a son with autism. During our first meeting with our OT, it became very clear how experienced and knowledgeable she is. I felt hopeful and relieved, but also a little sad, because it made all of this more real and valid. Mostly, though, I was grateful we found someone who was finally going to help us.

Prior to our appointment, I wrote a detailed report of Taylor's relevant medical history (food allergies, asthma, multiple episodes of pneumonia, chronic ear infections as an infant, the fact that she was born with the cord around her neck - which is listed as one of the factors with kids with SPD). I also wrote about our biggest behavioral challenges, and what we've put in place at home.

Our OT began our session by giving us a tour of the clinic. We ended in the "imagination room" where Taylor played with trains and cars while hubby and I talked with the OT. She began by going through a sensory profile with us. This was a multiple page scale that asked questions about how Taylor responds in certain situations. By the time we reached the 4th question, we were having a vivid dialog about our challenges and our OT had realized that we've already put a lot of things in place to help Taylor cope. For example, one of the questions was related to if Taylor is able to behave appropriately while eating out. I explained she is, as long as I bring a bag full of appropriate toys to occupy her. Left to her own devices, she'll crawl under the table, talk excessively and interrupt, and not have the patience to sit at the table. And, let's not forget about the fact that she almost never actually eats the food she is served. The food either tastes "yucky", doesn't look "good", is just plain "gross", isn't the same as the same item that I make at home or that she's served at school. 

During our discussion, we were very aware that Taylor was listening to every word that was said. I'll be completely and wholeheartedly honest, here, in hopes to validate what you may be feeling reading this, if you have a child who regularly challenges you beyond what you feel you can manage. A lot of our conversation revolved around my husband feeling like a referee between Taylor and I. While John and I have a very united front in our parenting, Taylor responds much better to his direction and discipline than she does to me.   Through this very candid discussion (while attempting to be discreet so as to not offend Taylor or impact her self-esteem), it became obvious to our OT how exhausting and unpleasant it was for me to be alone with Taylor. Everything was a battle. Our OT said the words for me in a completely empathetic and validating way, that I didn't "like" my child. This brought tears to my eyes. Tears because, she was absolutely right. Tears because how awful does that sound? Tears because I remember when she was about a yr old, someone commenting on how obvious it was that I really "liked" my kid and what a great relationship we had. I cried because we had lost that. I cried because despite all of my education and experience as a social worker, I felt totally lost at how to parent my own child. I believe that God doesn't give us anymore than we can handle, but I was really feeling like God had overestimated my abilities and strength. 

During that session, our OT gave us a lot of hope. She validated my parenting style, but also pointed to its weaknesses when it comes to raising a very strong-willed child with sensory issues. There were so many light bulb moments during that hour, I can't even begin to share it all. But I want you to know, that now, just a few months later, I can say that I like my child again, and I enjoy spending time with her. I no longer dread the weekends. Yes, there are still a lot of days that are exhausting, and she still has sensory struggles, but I'm able to control my reactions to her behavior and be more empathetic and help her through these challenges. 

Journey toward a diagnosis - Sensory Processing Disorder.

*This is another entry into our Journey with Sensory Processing Disorder. I actually wrote this after Taylor's initial consult with a pediatric neurologist in May 7th, 2012. I'm just getting around to posting it now.*

Today,  we took another step in our journey toward a diagnosis of Sensory Processing Disorder. We've had two sessions with our OT and she's convinced based on my report of Taylor's behaviors and observing Taylor in our home for two hours in which Taylor showed her true sensational colors, that Taylor does, indeed, have Sensory Processing Disorder. Specifically, she believes Taylor has Sensory Modulation disorder with primarily sensory seeking behaviors. As I mentioned before, SPD is a neurological disorder. Back when we were first faced with road blocks of getting OT covered by our insurance, I discovered it would be helpful for us to see a neurologist and get an actual diagnosis of a neurological disorder. Currently, SPD would fall under neurological disorder NOS (not otherwise specified) since SPD is not in the current DSM.  So, today we saw a pediatric neurologist through Loma Linda Children's hospital.

In preparing for Taylor's appointments, I learned long ago, that our appts are the most productive, when I write a summary of problems I'm seeing and questions I have, along with my goals for the appt. We had Taylor's birthday party yesterday and planning for that, combined with some other unexpected stress, left me with little time to devote to prepare a written summary for today's appointment. So today, I wasn't as prepared as I usually am. The doc began by questioning the symptoms I reported verbally. He questioned how this is different than any other child. Of course, Taylor wasn't helping our case given she was sitting contently silent, and fairly still, beside me. Of course she had a very mellow day because she got lots of stimulation yesterday at her party. Suddenly I felt defensive, but I also realized I wasn't reporting my concerns well enough to paint a true picture of my daughter and our daily struggles.

I handed the very nice doctor the report I had written a few months ago for our OT. Once he looked over that list of 12 bullet points of persistent problematic behaviors which are classic SPD behaviors, as well as my completed checklist for the Out Of Sync Child, he stated a full neurological assessment is warranted so we truly know what we're dealing with and how best to help her. The neurologist agrees Taylor has "issues" and wants her seen in his pediatric neurological assessment program. Through this program, she will receive approx 26hrs of testing and observation/evaluation. This testing will be broken into 3-4 hour sessions over several months. At the end of it all, we will have a better idea of Taylor's strengths, and areas to focus on in treatment.

Ultimately, I'm hoping through this program we will reach a diagnosis and from that work on a treatment program. Most importantly, I want to ensure she gets the right strategies in place so she can continue to succeed in school. She'll be going into 1st grade in public school in the fall. Currently, she's in a private kindergarten class in a preschool where she's been since the age of 2. There are maybe 100 kids total in the school. There are 15 students in her class, 1 teacher and 1 full-time teacher's aid. When she heads to public school, she'll be in a class of 30+ students with one teacher, and she'll be expected to sit and focus for 6hrs as opposed to the current 3 hrs. Her recess time will be shorter and she won't be able to have the level of intense activity on the playground that gets currently. At her current school, she often hangs upside down on the monkey bars for long periods of time. I don't understand the science behind it, but I know that hanging upside down helps people with SPD "organize" their nervous system. According to our OT, public schools in our area don't allow kids to hang upside down on the monkey bars. Yep. Seriously. I'm sure she'll figure out other ways to get the input she needs, but that's just one of the many hurdles I see us needing to jump as she transitions to public school.

The neurologist made it clear that he doesn't feel she has "severe" SPD. I agree. I also feel like we're miles ahead on our journey since the first time we met our OT. Heck, a year ago, I didn't even realize the extent of Taylor's sensory seeking behaviors. They were pretty well managed because she was getting enough appropriate input at school. It wasn't until she moved to the kindergarten classroom last June that I realized what a sensational kid she is and how critical it is that she receive appropriate stimulation in the appropriate amount.

So, all in all, it was a productive appt.

First Day of First Grade

I picked Taylor up from her after school program today and took her for a celebratory "First Day of First Grade" ice cream cone. As she sat there telling me about every detail of her day, I hung on her every word. Suddenly, I looked at her and realized before I know it, she'll be telling me about her first day of high school.

Then, I took a deep breath and reminded myself to take one day at a time and cherish every moment.