So Tired

Dear Janice,

I saw your FB comment about being “tired of hearing about disabilities”. Whoo, that was some backlash you got, huh? You didn’t back down though. You went on to say, “everywhere you look there are carts, handicapped parking, ramps…”. You wondered when it would be enough.

I have to admit at first those statements left me momentarily speechless. Let me apologize right now for thinking, “bless your heart!” We’re both from Texas so you know what that means. I also rolled my eyes. Sorry. I can be such a you-know-what.

Then I realized many people, including myself, feel the same way. I know this for fact. Whole lot of us are sick and tired of disabilities. You’re not alone Janice. Let me introduce you to some of your fellow haters.

C&J. Amazing parents of 3 children. Parents fighting the progression of Rett’s Syndrome on one of their daughters, Queen Bee. Rett’s Syndrome is a developmental disorder which has the potential to rob Queen Bee of some skill, ability or her life every day. It has already stolen much in spite of their constant vigilance.

Life at their house is full and rich with faith, love and laughter. It’s also full of monitoring life threatening issues like choking, aspiration, and seizures while providing the total care Queen Bee needs to eat, bathe and dress. Let me quickly throw in the therapy appointments, multiple specialists, hospitalizations, surgeries, dealing with state agencies, insurance companies, and the school district. Rett’s may have taken Queen Bee’s spoken words, but C&J make sure it doesn’t take her voice. That’s an arduous process that requires a great deal of commitment daily. The rewards are great, but hard won, and there is no taking a break on that. 

No slackers these 2, they are both working outside the home. They need both salaries, and are very grateful for the hours of respite they receive from a medicaid waiver funded by federal and state dollars. That “respite” time is when all the stuff gets done like cooking, laundry, cleaning, errands, and raising those other 2 kiddos. Not what most people think of as respite. As a side note, these hours cannot be used while C&J work for pay. Many legislators feel that would be paying for childcare. We wouldn’t want these families working the system would we?

Definitely in our club, Janice. C&J, are tired of disabilities. And do they hate Rett’s Syndrome!

Next on the roster is Ms. W. She’s a single, working mom of a young adult son with autism and behavioral difficulties. He’s a big guy at over 6 ft, towering over his mom by a foot. Through some very hard trials and errors, Ms. W has a protocol to help her son when he becomes overwhelmed, but it requires hypervigilance and even the best laid plans go awry sometimes.

At home he can be destructive when he’s upset. Keeping the holes in the sheet rock repaired is a constant challenge. Outbursts in public are another matter. She grew accustomed to the judgmental stares and comments of strangers questioning her parenting skills when he was younger. Now she worries people will see him not as bratty, but dangerous. On a regular basis she takes her son to meet the first responders in her neighborhood to help mitigate problems that might arise during an emergency.

Ms. W is also grateful for the attendant care her son receives from a Medicaid waiver program, without it she would not be able to support herself or him. You know that hyper-vigilance? It takes a toll. Our bodies and psyches weren’t meant to be flooded with cortisol constantly.

Ms. W, she’s tired, tired of disabilities with no end in sight.

Janice, I need to tell you how I came to hate disabilities. My daughter, Nani, has multiple disabilities and no facet of our family’s life is left untouched by that fact. I have it so much easier than some club members because my other daughters are raised. We don’t need me to work outside the home. My daughter’s need for 24/7 supervision is tough though. Frustration leads her to hurt herself and she has no understanding of danger. She also requires constant monitoring. She sleeps little and without much predictability. Never being able to go to sleep when I’m sleepy or sleep until I’m rested has destroyed my own sleeping patterns and I have the health issues to prove it. Google the effects of long-term (32 years!) sleep deprivation and you will see how destructive it is on many body systems. Surely you can see why I’m so very tired of disabilities. We also receive waiver services and are very grateful because these services have allowed us to keep Nani with us. BTW, waiver services are MUCH less expensive than her being institutionalized.

Some club members have a particularly difficult situation. Their child or family member suffers from an invisible disability. Mental illness. A disability still so shrouded in stigma they are reluctant to talk about it, and when they do they may receive a very awkward response from their confidant. Friends may feel strange about asking how things are going. What a lonely road they are on! The fallout in their lives is great. They’re tired of disabilities and may not feel like they can explain why. And by the way, there are scant services available for these families. 

Janice, I don’t know why you are so tired of hearing about disabilities. The points you made earlier lead me to think it’s not because it impacts your life daily except as a minor irritation. Right now you are only an honorary club member. Sadly, one day you or someone you love will deal with a disability of some kind. Your heart will hurt and you may cringe remembering some of the statements you made, but you will have nothing to fear from your fellow club members. There will be no gloating, no feelings of satisfaction, only open arms. The only thing you will hear from us is, “I’m so very sorry”. Our hearts will hurt with yours.

As to your question about why what Texas provides for people with disabilities is never seen as enough. It’s because there are tens of thousands of families experiencing the same difficulties as those I mentioned above. Ten of thousands of people waiting for 10 years or more on average. Families struggling day in and day out to survive physically, emotionally and mentally.

Texas is 50th on the list in services to people with disabilities. Texas can and should do better than that.

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