Coming to terms with being disabled, but not legally so

Disability is defined as a physical, mental, cognitive, or developmental condition that impairs, interferes with, or limits, a person's ability to engage in certain tasks or actions or participate in typical daily activities and interactions and as an impairment (such as a chronic medical condition or injury) that prevents someone from engaging in gainful employment. (from www.merriam-webster.com/dictionary/disability)

By both parts of that definition, I am disabled.  My conditions, all put together, significantly limit me on a daily basis and I have not been physically able to work a full-time job, or even a regularly scheduled part-time job, for years.  It's been a struggle as it is to educate my children, be my son's aide twice a week at school up until this year, and squeeze in as much side work as my body will allow.

This has been something that has been very hard for me to come to terms with.  I kept hoping things would get better and I would miraculously go back to the functionality I had for most of my life.  It is amazingly hard to accept that this body that I inhabit, that for years was very responsive and obedient to my wishes, that allowed me to work construction, do marathon arts and crafts sessions, and that birthed, fed and lugged around two children, now can't pick up a gallon of milk some days.

It was even harder to come to terms with when so many people kept saying things like, "Oh, it's just the aging process.  Everyone has aches and pains when they get older."  I'm turning forty-two this year.  The vast majority of forty-two-year-old women with my history and habits are not in constant pain every day, but the message of "Suck it up and deal," is a very powerful one in our culture if you are young (enough) and appear to be healthy.  

That's the other thing, I look healthy.  I'm not wheelchair bound.  I don't need a cane (most days) or slings/braces (also most days).  Generally, none of my issues show on the outside.  In fact, to try and improve symptoms, I lost a lot of weight.  Now I am more slender and still have all the health problems I did before.  People notice the weight loss, not the limp (in part because the physical therapists pounded it into my head to avoid limping if at all possible) or the careful way I have to get up and down from a seated position or the fact I often avoid carrying anything remotely heavy or how I freeze when faced with sudden change.  

The long road to finding actual diagnoses did not help the process.  It was one problem stacking on top of another, stacking on top of another over years.  It turns out in the end that many of them are intertwined symptoms rather than diagnoses on their own.  The whole process, from beginning to end, from the time I first started trying to solve some of the related health issues was at least five years.

When I finally admitted to myself that maybe, just maybe, I'm not going to get back to a point where I can work reliably, I looked into going on disability.  What I learned is that the system is rigged against people like me.  It sounds cynical, but unless you have worked enough in the past five years to have earned enough credits then you do not qualify for SSDI.  I obviously haven't because I have been disabled and trying to recover to a point where I wasn't and, on top of that, I was raising my kids, homeschooling, and acting as my son's aide on a volunteer basis, none of which counts for disability credits.  

I also don't qualify for SSI which is where I was pointed when the credits problem was explained.  To qualify for that, I would have to get divorced and get my name off one of the cars, close my business bank account, etc and so on because we make too much as a couple for me to qualify for that either.  The cut-off, by the way, appears to be $1500 a month for a couple at least in California and you can't really have any property of any value.  While that is just above the federal poverty level for a couple, we have two dependents which doesn't seem to be factored into the SSI information at all.  

Not to mention that finding ANY clear, concise information concerning requirements and income levels and all of that is a full-time job in and of itself and caused me massive anxiety attacks.  The Social Security Office wasn't helpful.  The local support agencies weren't helpful.  Even my health insurance company which has a kind of advocate for such things wasn't helpful.  It feels like the whole process is set up to make people give up.

(This was written the summer of 2018 and I forgot to publish it then.  Some things have changed and I hope to post about them soon, but I figured I should put this up in the meantime.)

Doctors, specialists, and surgeries, oh my! Or why I have to laugh instead of cry

Many know that I've had some stupid health issues going on. It's really been doing a number on my self-esteem and my ability to cope with life in general. I decided to list everything from when the worst of it started, just to get an idea of what I had actually been through. Some minor things happened before this, but this has all happened in the last two years along with a lot of upheaval in my personal life. Putting this all down and seeing it in black and white was both shocking, depressing and uplifting all at once. It's a hell of a lot to go through in two years and, all things considered, I could be a lot worse off at this point. I am so grateful for health insurance and for the doctors that would actually listen, not to mention the people in my life who have stood by me and supported me through all of this. I couldn't have done it without you.

• July 2015 - Visited emergency room with stomach pain that at the time was believed to be related to my gall bladder and was told to see a gastrointestinal specialist.
• August - October 2015 - Massive amounts of tests with the GI specialist ending with a diagnosis of possible IBS and the definite diagnosis of a small hiatal hernia.  Given no meds and told to come back if it gets worse.  At this point I had 24/7 pain between a 3-5 as well as constant nausea and with unpredictable and uncontrollable diarrhea.
• January 2016 - Visited my primary care doctor and begged him to do something, ANYTHING, to help me.  He have me a prescription for Prilosec.  Three days later I was back to normal except for occasional pain or stomach flare ups.
• March 2016 - Diagnosed with severe anemia.  Talked with primary care doctor about switching Prilosec to a medication that was less likely to block iron.  Switched to Pepcid.
• April 2016 - First iron infusion.  Started weight loss medication.
• April 2016 - July 2016 - Hand therapy for carpal tunnel and tendonitis (again... it was my third round of hand therapy since 2012, I believe).
• June 2016 - Bunion surgery.  Intense pain response. Keloid scarring.
• August 2016 - Second iron infusion.  Hysterectomy with a bad pain response and poor recovery needing additional meds and several months more recovery than expected.
• October 2016 - Surgery to remove screws and Keloid scar from my foot.  I’ve now had plastic surgery!
• December 2016 - March 2017 - Physical therapy for my foot.
• March 2017 - May 2017 - Physical therapy for my hip and posture.  Cold laser therapy.
• March 2017 - Emergency scleral banding surgery for a prolapsed retina.  Extreme pain response and an overnight trip to the ER.
• April 2017 -  Asperger’s/high functioning autism diagnosis.  Stopped weight loss medication with a loss of over 30 lbs.  Started the muscle relaxer cyclobenzaprine.
• June 2017 - Fibromyalgia diagnosis.  Started a trial of Lyrica.

Why I Hate Ground Wasps

Figuring I should be a good mom and conscript the children into forced labor in the not quite boilingly hot outdoors we went out to clear brush, move wood, and other such necessary home ownerly tasks. They are good boys, so there was no complaining about the conscription. Everything was going smoothly, although I did realize I probably should have had coffee, pain killers and a muscle relaxer first.

Then Little Bear stepped on a ground wasp nest. Well, more specifically, he stepped on the unstacked wood pile near where his brother had been working and the wood pile settling seemed to have started demolition proceedings on the nest. Needless to to say neither ground wasps nor Little Bear were at all pleased with this and much screaming and running about ensued.

This isn't the first time Little Bear and I have dealt with ground wasps. Several years ago we had an altercation with them when his school was on a hike so we already knew this was going to suck. I had him run into the house with them chasing him and then got his brother and myself into the house without any of the flying sadists. I had Little Bear strip off his pants on the back deck because that is where they had decided to go after him, straight up his pants... He was then sent to the kitchen. No tagalongs yet, but at least two bites and much screaming and tears.

A friend had just stopped by to pick up someone and offered to help so I had them go search for plantain while I found baking soda. They didn't find any, but in the meantime more screaming ensued. It turns out Little Bear had managed to bring one of his new friends inside with him and said friend was busy doing all sorts of damage through his sweatshirt! Like any good mom would do I panicked and tried to remain calm (yah, right) and got a paper towel and squished the guts out of the nasty bugger. Then we stripped everything off of him just to make sure he was bug free.

After coating him with baking soda, counting about 5-7 possible welts, and finding out our wasp death spray was empty, I went off in search of plantain partially because I knew Little Bear wouldn't be consoled until I found it even with advil and icepacks and partially because plantain really is a miracle cure for stings. I knew there was some at my older son's school so that is where I went, still no coffee and in my house grubbies and bra-less because, you know, that's what moms do.

I came home with handfuls of leaves, way more than I could possibly need, to find him still standing in the kitchen with icepacks, flaked off baking soda littering the ground around him, clutching his special stuffies, and still crying. I poulticed him up in the ancient fashion of chopped and pounded leaves covered with bandaids. Turns out there were only three real welts left after we washed off the baking soda. I'm drying the rest of the leaves I hastily harvested in case this happens again. Then we will get the chance to learn if dried leaves even work.

Then I cleaned the kitchen and had coffee. Definitely need to remember coffee before ground wasp attack next time, if there is a next time. Little Bear seems intent on no longer interacting with nature unless forced at gun point, but I deal with that particular issue once he heals.

The Curse of Invisible Illnesses

The hardest thing about having an invisible illness (other than coping with the illness itself) is that people do not understand the symptoms and can judge others for them. This happens even within communities of people who have the same, or similar, invisible illnesses or who are caretakers for people with them. The problem is in so many cases symptoms manifest differently for different individuals even if they suffer from the same illness. In addition to that, people expect certain behaviors and actions to mean certain things. On top of the challenge living with the invisible illness, people need to navigate the often rocky roads of social interaction that are only made more treacherous by their condition.

Invisible illnesses affect people's interactions with others on a daily basis. People who do not live with these challenges often have trouble understanding how much it can limit the person with the illness or how different that person's experience of the world is from theirs. When someone is affected more or less by their illness than another person it can change the entire experience making one person's life completely different from the life of another with the same diagnosis.

Take, for example, two individuals with Autism Spectrum Disorder. One might be non-verbal and have some mental delay, but be able to adjust to change and deal with chaos, while another could be brilliant, but meltdown over the slightest change in schedule and be unable to eat food with any texture to it. These are extremes, but you can see how the two individuals would have very little understanding of the other's struggles even though they have the same disorder. You could make the same comparisons for anxiety, depression, and even physical conditions like Chron's or hiatal hernias. While the majority of individuals will have similar symptoms those on the extremes or those with multiple conditions or complications will have very different experiences than the norm.

Society depends on social constructs. For example, white lies are considered just part of life to most people, the grease for society's wheels. “How are you?” is answered by, “I'm fine and you?” whether or not the person is actually feeling fine. How about when a person, say with autism, does not understand the concept of lying? When every answer is the straight truth? That person is thought to be rude, abrupt, and lacking in manners, maybe even self-centered, but that is just how they are. There is no intent to upset the people they are talking with. So something that sounds positive, difficulty lying, becomes something that sets the person apart from others and not in a positive way.

Most people read others' actions based on their experience of the world and within the framework of societal constructs. This works most of the time for most people until complications like invisible illnesses are thrown in. The easiest way to avoid the problems that can spring from this is to not judge, specifically to not immediately judge negatively. Consider what could cause the person to do what they are doing beyond what your knee-jerk reaction to it is. Ask them if the motivation for an action is unclear and then believe them when they tell you. Most important of all, never tell the person they do not have the challenges they say they do or place moral judgment on them for actions necessitated by their invisible illness (like canceling plans due physical or mental complications, not understanding subtle cues, meltdowns, panic attacks, etc). Dealing with the physical and emotional impact of invisible illnesses is hard, throwing in having to dodge the misunderstanding of others based on it is something most people never expect when they get their diagnosis.

There is a wonderful article, The Spoon Theory, that explains part of what living with an invisible illness is like: http://www.butyoudontlooksick.com/…/writt…/the-spoon-theory/

What is Autism Spectrum Disorder (ASD)?

Many people have heard of autism, but there is a lot of misunderstanding about what it actually is. Autism Spectrum Disorder (ASD) is a developmental disability that currently affects approximately 1% of the world population and about 1 in 68 children in the United States. ASD is an umbrella term that includes the previous diagnoses of autistic disorder, Asperger syndrome, PDD-NOS (pervasive developmental delay - not otherwise specified) and childhood disintegrative disorder. Boys are diagnosed with ASD at a much higher frequency than girls, although this may be due to misunderstanding of symptoms in girls therefore underdiagnosing them. ASD is a lifelong disorder. It is not something a child will “grow out of” and early intervention can greatly improve a child’s long term life experiences.

What classifies a person as having ASD is trouble with social communication and a need for repetitive behaviors. People with ASD range from being significantly impacted by their disorder to highly functioning and can range from severely mentally challenged to brilliantly gifted. No two people with ASD will show exactly the same symptoms. Only a very small percentage of people with ASD are savants.

Some things that are common in people with ASD are:
- Lack of eye contact
- Trouble relating to other people in a "normal" way
- Trouble expressing themselves, particularly emotionally or in social settings
- Fixed and repetitive behaviors
- Intense interest in a single or limited number of (often quite unique) topics
- Trouble adapting to changes in routine
- Odd speech patterns or speech delay
- Taking everything literally, trouble understanding figurative language or pretend play
- Abnormal reactions to sensory input
- Stimming (repetitive behaviors that are either self-soothing or in response to intense emotions)

Children are often diagnosed when their parents and pediatricians see that they are not reaching the same milestones other children their age should be meeting, although some children are diagnosed when they start losing skills they had already acquired. Although moderate to severe cases are often diagnosed by the age of two, many children, especially those who are less impacted by the disorder, are not diagnosed until much later. Some people are not diagnosed until they are adults.

There are many other conditions that are comorbid with ASD. Many people also have seizure disorders, sleep problems, stomach conditions, mental health issues, and sensory processing disorder to list a few. Due to autistic symptoms (like being non-verbal or processing sensory input differently) it is often hard to diagnose comorbid conditions in individuals with autism and in many cases they are written off as “part of the autism” when they are actual separate issues.

Although there is no completely established cause for ASD yet, there has been research and we are currently learning more about what might cause it. Although originally it was believed to be caused by lack of emotional connection by the mother, that is no longer believed to be a cause. It is believed that there is a genetic component to ASD. It has been shown that if a child has a sibling with ASD they are more likely to have it themselves and it does tend to run in families. It has also been shown that ASD is most likely triggered during gestation or shortly after birth. Children who are premature or low birth weight, born to older parents or to mothers who took certain drugs or had certain complications during pregnancy are more likely to develop ASD. Although there is a huge debate about a link between vaccines and autism, many large studies have been done and, as of now, the science stands firmly behind no link. The CDC is currently doing a large, ongoing study called SEED (Study to Explore Early Development) in hopes of finding out more information about the cause.

Many people are dismayed at an ASD diagnosis, but unless functioning is highly impaired and there is significant mental delay many, if not most, people diagnosed with ASD can live full lives, going to school, working, marrying and having children of their own. A diagnosis just explains why things are different with a person and allows the people around them to give them the support they need to thrive. There are many interventions and supports available to people on the spectrum today. People with ASD are just experiencing this world in a different way than the rest of the population.

Sources for details that were not already stored in my brain:
https://www.cdc.gov/ncbddd/autism/index.html
http://www.autism-society.org/what-is/facts-and-statistics/
https://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-asd/index.shtml

Sesame Street's New Muppet with Autism, Julia

Many, perhaps most, people in the autism community know that Sesame Street has introduced a new muppet, Julia, who is on the autism spectrum. It has drawn a lot of attention, both positive and negative. Some people are glad that it shows a more realistic autism than movies like Rain Man. Others are upset that it didn't get into the harder aspects of the disorder, like diapering older children and violent outbursts, feeling like Julia doesn't show thier life with autism. The things is everyone on the spectrum is different and Sesame Street is a show for children. Julia's role is to help preschool children learn how to make friends with people who are different in ways they don't understand. She is there to teach understanding, inclusion, and acceptance of differences.

There is almost no situation where everyone will be perfectly pleased with anything in this world. When you are discussing a topic as vast and complicated as autism spectrum disorder that problem just gets magnified. There is no way to make a character who has all the complexities, issues, comorbidities, strengths and complications that can be involved with the whole spectrum of the disorder. What does get included for public consumption on screen has to be all about the audience and the goal of the show and character.

I watched the original segment and it had me in tears. It shows the things my Little Bear does as different, but okay, and as something to understand and accept rather than something to hide away and pretend doesn't exist. He is ten now and I still take my Little Bear away, often with special stuffies just like Juila, when he is melting down for whatever reason. Loud sounds used to break him down almost exactly like the siren did Julia; they still do on hard days. I still coach him through deep breathing to calm him down during meltdowns. This show changes autism from some scary "other" to avoid into just differences in a friend. Once again Sesame Street is teaching inclusion and friendship. This is why Julia is so special to my heart.

Someone has to pick and choose what to include, what to explain, what to just show, and how the interactions will go. Theater is so much easier than real life on the spectrum because it is all scripted. Someone is in charge of every detail. A soap opera will get a very different character than a show for preschoolers. A documentary will have a very different feel than a fictional romance or a cartoon. Rather than have issues that a preschool show puppet character is not as severely affected as any one particular person with autism, we should applaud the fact that a show as influential as Sesame Street has a character with autism who is noticeably affected by the disorder. It isn’t a teen boy with a couple minor quirks who gets the girl in the end, but a child with meltdowns who echoes and is only somewhat verbal. This is a huge step forward, a huge preschool sized step, but childhood is where everything starts.