Inspirational or demeaning?

I do not have a disability and cannot speak for those who do. I speak as the parent of a person with multiple disabilities and share her world of which I am a keen observer. Sometimes I forget because disability is so much a part of my life, but the difference between being a disabled person and caring for a disabled person is vast.

Lately I have read numerous posts, articles etc written by people with varying disabilities and have noticed a very common theme. These writers, and I suspect they speak for many, find it objectionable to be considered inspirational because of their disabilities. This post is probably the one I've seen most.  They are not on earth to inspire others or to have their ability to meet real day to day challenges attributed to a good attitude.

The following picture is fantastic, but the caption is not. Captions on a picture like this one suggest that attitude is the key to overcoming challenges.

If that quote were true, Maggie would be a ballet dancer today because no one has a better attitude than she does. Obviously that's not happening.  A good attitude will not make disabilities go away and this "abelist" way of thinking is disrespecting people as individuals. ("Abelism", I am learning, is the continued marginalization of disabled individuals by those who do not have disabilities)

 Respect, accommodation where needed, recognition of challenges are welcome, but people are working hard to live their lives as well as they can and don't want to be inspiring simply because they have a disability. Frankly it simply adds to the pressure. In addition to meeting their challenges, they have to balance on a pedestal. These are human beings with strengths and weaknesses -- and by weaknesses, I am NOT referring to their disabilities. The disability does not define humanity, but it seems to be how others define persons with disabilities all the time.

I get that. I really do. I have written many times about how uncomfortable I feel when strangers make comments about how wonderful I am, or how blessed we are, or what a gift Maggie is. I appreciate it, but it makes me squirm. Strangers don't know anything about us and they are automatically impressed, inspired, or ready to canonize Maggie or me.

 But I have to be honest. I understand why people are inspired by Maggie. I am inspired by her every day. I am inspired by many of her peers as well. The kids I see in the hospital who are smiling and joking while hooked up to countless machines also inspire me. And anyone who wasn't inspired by or in awe of Oscar Pistorius (Olympic runner pictured above) is made of stone.

I am inspired to quit whining about what ever has me down. I am inspired to try harder. I am inspired to be happier and more thankful for the things I have in life, including an able body.

I really don't know how to reconcile these things. I get that there is a risk of further marginalizing disabled individuals by touting those dealing with disabilities as inspirational, but I remain inspired.

Perhaps the lesson is to be inspired by individuals instead of by disability.

I welcome any thoughts here.....

Rest in Peace, little one

I just read a story about a little girl named Laila who died over the weekend. She was just 8 years old and from all accounts was the apple of her mother’s eye. Laila had severe cerebral palsy and unspecified mental disabilities, but she always looked like a princess.   According to neighbors, her mom went beyond any normal parent in making a good life for Laila.

Mom did go beyond any normal parent. She hooked the tailpipe exhaust to run into the car, put Laila in and got in herself. The caregiver found them when she arrived to help care for Laila. Mom is going to recover, and she will be charged with murder. Laila is gone.

What causes a parent to do such a thing? It Is unfathomable to me. There will be theories, I’m sure. People will blame the amount of care that Laila required. People will blame the system that does not work. People will blame mom for not being stronger and tougher and for not seeking help when things became too much for her to handle.  People will blame society that has no place for the Lailas of the world. 

Every theory will be correct to some degree.

I do not have answers. I wish I did. Some families simply cannot handle the stress and they snap under the pressure.  Obviously I am not condoning or excusing the mothers actions in any way. She killed her daughter and she must pay for that crime.

It just makes me profoundly sad.

Rest in peace Laila.

Channeling Aretha

 Anyone who has been reading my posts for a while knows the incredible amount of work taking care of Maggie involves. Maggie’s physical needs require specialized care 24/7; but managing everything to meet her physical needs is another 24/7 job. I do both jobs and then try to deal with the rest of my life. Not everyone can do what I do.

Admittedly, I have help with the first full time gig. The nurses work feverishly while they are here. Often they need my assistance, but without them, we could not keep Maggie at home. Even with that help, though, my plate is extremely full and my freedom is extremely limited. My life is not easy, but it is very rewarding. Am I looking for kudos? No. Am I complaining? No. I am simply stating the obvious. 

Though there are thousands of parents similarly situated, society really does not have a convenient slot for us. We are in between slots. Though the focus of our life is caregiving for our children, we do not really fall into the “stay at home mom” category. But we don't work outside the home so we are not professionals either. We are knowledgeable unlicensed medical providers and social workers. 

We are often exhausted and stressed. This is the one category that people apply. Always. Any justifiable complaint or concern we raise is immediately attributed to the stress we are under. Yes, we are under stress, but sometimes - just sometimes – there might be something more. Having someone decide that the stress of my “situation” is the only driving factor in my life disrespects me as a person as well as the hard work I do every day. That disrespect is difficult (or impossible) to tolerate.

One thing I do expect in my life is respect. Respect the work involved and for the effort expended to lead a “normal” life, despite the limitations. Respect the fact that I do not have the same freedom as other people. Respect the fact that even though we make it look easy it is not. Respect our positive outlook. Though the water in the glass is tilted a bit because my life is wildly out of balance, that glass is more than half full. Respect the fact that just maybe you just do not know everything that goes on in our house and our lives and your suggestions and comments are not appropriate. Most of all respect Maggie for the incredible person that she is.

Generally, we are respected, Maggie and all of us. Sometimes, though, all of that effort is for naught. Well meaning but ill-advised acquaintances extend pity or platitudes, make unwelcome comments, give inappropriate advice or take advantage. I get that they mean well and I get that they do not know better, but it is tiresome. After all this time, some should know better and not making the effort to understand is itself disrespectful.

Ghandi said, “be the change you want to see in the world.” That means if I want respect, I have to be respectful. All I can do is try my best to maintain respect for those who do not show respect for me. Honestly, that becomes more and more difficult with the passage of time. This may come as a shock to some of you, but there is a slight possibility that Ghandi was a tad better person than I am.


If I can’t be Ghandi, I’m going to have to identify with another icon. Sing it Aretha http://www.youtube.com/watch?v=6FOUqQt3Kg0&feature=player_embedded

Revelations

We are trying to find our rhythm here. After the illness and passing of Steve's mom and the unbelievable whirlwind of activity preparing for and attending her funeral services, everyone is knocked off their game a bit. It was exhausting physically and emotionally, but it was lovely.

All the activity revealed yet another flaw in our system. It was frustrating that I couldn't be fully present for Steve and the rest of the family. I kept leaving things before everyone else because I had to get home to Maggie or take Maggie home. The nursing situation works fine as long as I stay home to assist and/or fill in, but it does not work for any change in the (very dull) routine.

  I need to find someone who can occasionally drive Maggie and her nurse to things so that I can fully take part in other activities. The problems are not only the additional expense, but the logistics. It is so difficult to coordinate and orchestrate all the things Maggie needs that the thought of adding another layer is too much to consider.

We need to figure out a way to get more breaks. In Maggie's 16 years and one month on earth, Steve and I have been away alone together a total of 4 nights. When I get the energy we will have to do another night, but it's 18 hours of work for 24 hours away and the hassle factor is daunting.  Taking Maggie away with us is not a realistic option at all. She cannot fly anywhere because of the amount of equipment we would need to take. Even if we take a road trip we would either have to pay for a nurse to accompany us or I would have to be "on" round the clock. Neither option is doable and frankly, I'd rather stay home.

Caring for Maggie is becoming increasingly difficult and getting any breaks from the routine or time away for ourselves is nearly impossible. When I cannot orchestrate being fully present for my mother in law's funeral, you can only imagine how difficult it is to steal any time away for fun or recreation. This realizatiion may have been a gift from my mother in law to show us that we need to make changes so that we can live our life and tend to other facts of our existence as well.

Now if I could only figure out how to do that, or find a pot of gold, we would be sitting in tall cotton.

Bon bons and soap operas

Today is get better day. I have been sick all week. I caught Maggie’s virus and wow, it knocked me for a loop. I tried to ignore it on Monday and stayed in all day Tuesday. I tried to ignore it yesterday and I’m home all day today. I hope that staying in today will knock this out once and for all.

I hate sticking around here when I don’t have to. There are so many days that I have to stay close to home to finish something or wait for somebody, but not today. I do not have any work projects at the moment, the house is clean (but there is a pile of laundry to do) and I am not expecting any deliveries.

It is actually unusual that there aren’t deliveries or somebody at the house. Today is Thursday and it is the first time all week I do not have to wait for a delivery. The g-tube supplies and the food came yesterday, the diapers and those supplies came Tuesday, the trach supplies came Monday and the oxygen was delivered last Friday. Someone has to be home to collect this stuff and they all give that “delivery time window” that never really applies. Actually, the diaper delivery will leave them on the porch but everyone else needs a body here.

Caring for Maggie is as much or more hands off work as it is hands on. There is a lot of “management” involved. I have to keep all the supplies flowing, satisfy all the requirements for the insurance, medi-cal, the Regional Center and California Children’s Services, deal with the school district, arrange the nursing, do all the nursing paperwork (that’s about 10 hours a week by itself), keep the elevator, wheelchair and other equipment serviced etc, and program her talker every night. There are also the almost daily trips to the pharmacy or calls/visits to anyone of a number of medical professionals or runs to the school. This is in addition to the emergencies and the lifting, feeding, diapering, suctioning etc that I do when the nurse isn’t here or help the nurse with while she is.

Of course, that is just the extraordinary stuff; I still have the regular household responsibilities that everyone else has.

Sometimes I even get to just be mom.

Not often enough, though.

This is why I get a little more bugged than most by comments suggesting I have "nothing to DO” while Maggie’s at school. Or by people volunteering me for things because I have free time. I do not have any free time. Zero. I am not even familiar with the concept of “free time”. Because I am stuck in the house so often I find time for writing and other projects, but I am not free to do what I want. I have options within my narrow range of opportunities, much like a person who works full time. Only this job never stops.

So today, I will just concentrate on getting better and be happy that the doorbell will not

ring. Maybe I'll just eat some bon bons and call it a day.

Asthma? ATTACK!

Having a disabled child is difficult every day. Many people assume the emotional burden and sadness make it tough. Those are there, but after a year or so, it wanes and just becomes part of the fabric of your life. They rise up periodically, especially in times of crisis. For the most part, though, the day-to –day difficulties are much more practical than emotional.

I deal with several government agencies, three different medical supply companies, the pharmacy, the nurses, dozens of doctors, the school district, the bus company, and the health insurance. It is not every single one every day, but at least a couple every day, and more often three or four. I have it pretty much down to a science. If everyone does his or her job, things flow smoothly. (That is a BIG if) It is a ton of work and it takes a ton of time. I do not mind doing it, but I go a little crazy when one of these multiple entities does something stupid. Saturday was one of those days.

Saturday afternoon Maggie and I were dancing in the living room to the music we have amassed for her birthday party. We were having fun and laughing. Then the health insurance company called. That is unusual for a Saturday. The guy asked to speak with Maggie and I simply said, “I’m her mother, can I help you?” His perky reply, “Oh, right, she’s a minor” [I didn’t even bother to tell him she was also non-verbal]

He was calling to tell us that we qualified for a FREE service from the insurance company. I stopped him and asked if this was the case management situation. I would welcome that if it worked, but each of our health insurers over the years has appointed a case manager that either doesn’t manage, is unreachable, or, in one case, repeatedly told me to sit down and have a cup of tea because I ‘had to take care of mom, too’. I do not want TEA; I want approval for a procedure.

He assured me it was not that, but thought this was something that could really help us. Ok, I’m listening. He said, with a voice filled with pity and concern,” I understand your daughter was diagnosed with asthma.” (His voice turned very serious as he emphasized the word “asthma”)

“Asthma? You are calling me about asthma? Are you kidding me?”

For the record, you should be aware that Maggie does not have asthma in the conventional sense. That can be life threatening and scary and I am not in any way diminishing the potential seriousness of that condition. Technically, Maggie may be considered asthmatic, she is on multiple respiratory drugs that are often used for asthma; but it is just a small part of what we deal with hundreds of times every day.

The poor guy was obviously taken aback at my reaction, and I am sure he thought I was a crazy unconcerned mother. He was half-right. His voice was a bit chiding now: "Ma’am we have a program that will help your daughter care for her asthma.”

I was exasperated, but not toward him. I simply said, “Look. My daughter has about 500 things wrong with her and the asthma is number 497. We have that well under control. My daughter needs total care 24 hours a day. Do you have any programs for cerebral palsy, hydrocephalus, getting tracheostomy supplies, or feeding tubes or catheters, or nursing services?

Ok, maybe a little toward him. Please keep in mind, he called me, to push a product, I did not call him seeking assistance.

There was a pause. The guy asked if she was under the care of a nurse and I said yes, all day and all night every day. Of course, the insurance company does not cover that, so it’s as though it doesn’t exist in their world. He said he would take her name off the list so that I do not receive several more calls about it. That is a good thing, unless the other conditions she has are handled through other offices.

I hung up the phone and just said aloud “That is ridiculous.” My husband asked what happened and when I told him he laughed and said, “Poor guy, he never had a chance.”

I did not find that as amusing as my husband did.

I am sure Maggie’s meds triggered her eligibility for this program and no one ever considered anything else about her. That’s par for the course. Maggie’s complicated care is tangled in this web system of care; she has many people monitoring her from every angle. However, no one knows the whole picture. Except me. That bugs me – a lot. Especially when the insurance company, which is footing the bill for many of these things, seemingly uses an alphabet soup approach to case management. Asthma is just the first of Maggie’s condition alphabetically. I guess they don’t care about her apnea. Next week they’ll call about her bladder infections.

I’ll let my husband answer the phone and Maggie and I will keep dancing.