Monday, September 11, 2017

"The Talk"

It's been a very quiet time here, but not because it was quiet elsewhere. It was busy, at times crazy, and I felt like all I would do here was complain and that wasn't worth your time. So I stayed quiet.

No one is quiet today in America.

I woke up today, and the first thought I had was not `It's 9/11' and I think it may be the first one in 15 years where I didn't think about it the second I awoke. Is it that 15 years is the time it takes for the memories not to assault you the moment you are conscious, or that now that we have a dumpster fire "leading" the country, it isn't possible for 9/11 to be the first thing in our minds any more because we are too worried about healthcare, or immigration, or the integrity of our voting process, or education, or basically any facet of our day/life?

I wasn't looking forward to today because today I went in to Tucker's class to talk with them about Connor. I'm pleased to report that Tucker spoke a lot more this year, and far more openly, than he has in the past with his peers. They were all quiet and respectful (yay, Mrs. Ready!!) and had only a few questions. I'm really hoping that this is the last year Tucker needs me to come in with him to do this. Not because I won't, or don't want to, but because I want him to be confident enough in himself to feel free to talk about Connor and to answer questions about him without feeling like he needs an adult to explain everything.

I asked Tucker at the beginning today, "Would you call Connor your first best friend?" and he knit his eyebrows together and said, "Yes." and then proceeded to tell his class how affectionate he always was towards his brother. This is a true thing - he was ALWAYS affectionate towards Connor. Connor never got lip from Tucker. The only human to date who never got lip from Tucker. Another amazing thing in Connor's list of amazing things.



Thursday, May 04, 2017

THEY DARED

Jesus.

They dared. They dared to decimate Medicaid and to institute considerable limitations on pre-existing conditions.

Now I'm seriously considering starting a foundation specifically funding assistive technology for underserved disabled individuals.

And how on earth do I do that? On top of everything else.

I am in the 1%, I know it and I am grateful for all that I have. It never would have occurred to me that I would have to fight other people in my socio-ecocnomic strata so that the disabled community isn't left to wither away.

Shit.

Wednesday, March 15, 2017

Dear Republicans....

I don't want to be judged. This means I spend a lot of time preventing myself from judging, as I grew up with the whole "judge not lest ye be..." mentality. Well, eventually.

But I have to ask, and I'm going to do this in letter form, and it's CRAZY judgy...

Dear Congressional Republicans,
Why do you want to eviscerate and undermine Medicaid? Perhaps you are lucky. Perhaps you've never truly known a person or a family with deep, long-term special needs or disabilities. If that's the case, I am happy for you. I do know what that is like. My husband and I are both solidly middle-class in upbringing. We both attended strong universities, received our Bachelor's degrees in the originally-intended 4 years, and we got to work. Became contributing members of our great society. I made less money than him (still do...but this isn't about gender pay parity). We are LUCKY. We worked hard. We had money when we were growing up, and truly wanted for nothing necessary. Sure, I wore hand-me-downs. But my parents also paid for a private-school primary and secondary education for me, so I'd be a leg up when I attended college. I went to a top 20-ranked University, thanks to that primary and secondary education, and I graduated with a 3.4 GPA at that competitive level. None of which was paid for by student loans, Pell grants, or other funds sourced from outside my family.

We bought a house. We started a family. Then the record screeching happened. Our son was born with an ideopathic seizure disorder that rendered him incapable of caring for himself ever in any way. We signed him up for insurance under both our companies. That meant our healthcare costs were doubled to begin with. And to add insult to injury, we discovered that we, as the parents and legal guardians of our son, did not have the right to pick which insurance would be "primary"...a decision we wanted to make because one plan was clearly superior to the other. Sadly, the insurance companies picked for us, or rather, against us. But we persevered, because it wasn't our son's fault that health care was so messed up.

Then, when he was about 5, we came off the EDCD Waiver list, and he had waiver funds through the state and was signed up for Medicaid. Now he had three insurance providers. Even more complicated, but we applied our combined brain power to navigating it. Moreover, it took more than 6 months to get off that list, and months of paperwork that we had to be mentored and guided through because it's complexity was staggering. We both speak English as a first language. We shouldn't need documents in English to be interpreted for us.

Medicaid made sure our son had diapers. They don't make diapers commercially for children larger than 30 pounds -- then you move to pull-up diapers, which he could not use. The next size up commercially available was for adults. Our son, who never made it to adulthood, would have been up shit's creek (kind of literally) had Medicaid not supplied this basic necessity.

When our son needed a specialized wheelchair for transport to and from school, the cost that was quoted to us exceeded $6000.00. And of course, we could have dipped into savings to buy it, but the three insurance carriers sorted it out and covered it together. We are lucky that a $6000.00 cost wasn't going to break us. But we know this community, and not everyone came from affluence, or lives in affluence now.

These are just a few areas where Medicaid supported my son, and as a result, the rest of our family. We are eternally indebted for this support.

If you think for a SECOND that there were "'death panels" in the Affordable Care Act (and I know some of you do) then you can be damn sure that thousands of Americans will die because their Medicaid will evaporate with your new plan to push that back to the states which cannot afford to make up the lost funding, and they won't have BASIC CARE.

So, how do you feel about that? Do you feel that consigning a disabled person to death because you don't feel that it's fair to be covering them at "your expense" is reasonable? I expect if the answer is yes, that you have never truly known someone disabled, or who is a family member in direct care of a disabled person. That makes you lucky. But it doesn't make you knowledgeable about how difficult every day is for those individuals (many of whom were born into their disability) or their families and caregivers. And it doesn't make you right. The community of the disabled and their families see you...the providers of healthcare in American see you...the world sees you. They see you grubbing after money and abandoning those who cannot provide for themselves...an abandonment of our society.  So then I need to know...

How dare you?

Sincerely,
A former Special Needs parent, and a human first

Friday, February 10, 2017

When your new status of WOKE inadvertently lands on your 10-year-old

So yesterday I really started to embrace my new FIRED UP READY TO GO WOKE status.

This morning, I got up, showered and dressed for an early appointment. I came downstairs in my dress and slippers to get breakfast ready for the boys. Drew sat there in his bar chair and said, "Mom, your skirt is too short."

FIRST OF ALL: WHAT WHAT WHAT????????????????????????

I should explain that all this occurred pre-coffee as well.

I said, "Excuse me?" and his face fell. He started to sputter. I held up my index finger (even though Id had no coffee I managed not to give my kid the Finger). Then I said:

1. What I choose to wear any day, work or personally related, is none of your business.
(add in the second finger)
2. What YOU choose to wear any day is none of anyone else's business.
(add in the third finger)
3. What exactly is too short in a knee-length skirt?

He had no response. I guess sometimes the best parenting is so organic and unexpected that you have to capture that moment, that lightning in a bottle. I think I did okay by ensuring that he knows that his opinion on how someone, especially someone female, is dressed has no bearing on him in the least. But along the same lines, how he dresses has no bearing on anyone else's life. And he will not shame a person for their sartorial choices. Not once in my house. Not once in my presence. Not once while I am teaching him right from wrong.

Poor kid walked right into my new status, and I don't think he know what hit him. But I hope whatever hit him sticks in the most positive of ways...

Thursday, February 09, 2017

WOKE

WOKE.

That's what I feel today.

Today, I celebrate the birth of my IEP baby thirteen years ago. Eight days ago, I mourned the anniversary of his passing.

And every day, I am now more open, more welcoming, more accepting, and more aware. We have a new sheriff in town, and I do not like his education deputy. The extraordinary education of our special needs population could hang in the balance, and today, I thank God that as a parent, I am not as worried as some of my friends, because my special boy's time in the education system ended abruptly a few years ago with his passing. Now...I have more time and energy to give to THEM, and their special babies, to help be sure that the exceptional teachers who helped us, and helped him, still have ways to meaningfully contribute to educating all the members of our next generation, they typical and atypical.The IEP process isn't the pinnacle of efficiency. How could it be - it's an instrument of the government. But it is better than nothing. Giving parents "choice" to take their students otherwheres and removing federal protections cannot reasonably support a family already overencumbered with a lot of hard knowledge.

A lot of you know what it's like to have an atypical kid, because at the core, we're all atypical, some just more than others. Now, add into that having a language barrier because up until about 10 days ago, we were a country that welcomed everyone. Can you even fathom explaining a metabolic condition to someone whose first language isn't English? Medical terminology is hard. It's HARD. It turns you into someone you weren't - overinformed, exhausted, replete with the knowledge of how something is supposed to work and how your child's particular case doesn't work.

And then they want to translate that into educational terms too.

It's utterly overwhelming. Since I'm not overwhelmed by that any more, but still burdened by my knowledge, it's time to turn it on to help Connor's classmates, his friends, his community.

I see it all, and I won't let them take education away from our most fragile citizens.

WOKE, friends. In honor of Connor.


Thursday, February 02, 2017

700%

Thanks, first and foremost, to all who found a way to touch us yesterday. It was a day, very much a day, and we got through it together. It was the first time I permitted my children to play hooky. That says something. We took a family hike, had all our meals together, and Lee and the boys set up an altar for Connor.

A few days before, I got home from I think basketball, and there was a package from me from my dearest Anne. If you have been reading here for a while, you'll already know that Anne and I go backc to the Utah Shakespearean Festival, and that when Connor died she hopped on the train and came down and stayed for days, helping us (mainly by doing dishes, if you ask her) and keeping the homes fires burning alongside our families who also flocked to our sides.  Her daughter is one day younger than Connor. Long story short - we're tight.

Anyway, I opened up this slightly lumpy package, and found this:


Then, I started to cry.

700% is the overtime we had with Connor. The doctors told us he would likely die before his second birthday, possibly before his first. But he didn't. He showed us from the first moments of this dark path that he was not going without a fight. And now I have a bracelet that reminds me of him, and of his fight, that I can wear every day. If someone asks me what it means, I can choose to tell them the whole long story, or I can just say, "It's a family thing," and hope they leave it at that. But I like these reminders of him that I can wear outside, especially ones that fill me with pride because it accounts for all his fight, and our fight too. Without knowing it was happening, he gave me the gift of unending fight. And these days, there's a lot of fight that's needed, so I will wear it to remind myself that I can't give up.



Thursday, January 19, 2017

Last Day...

All, I've seen photos of Klansmen in full, um, regalia, in Washington, DC today. It's yet another national embarrassment that this is happening on the last day of the administration of our first African-American president. I am so deeply, deeply ashamed.

My heart and head are so battered I barely have words. My prayers are that everyone who is traveling (either here, or away from here) is safe, and reaches their destination with a minimum of disruption. My prayers are that when my boys ask me why there are people in "costume" in DC right now, I can explain it to them without breaking their spirits.

On my walk this morning, I had a deep sense that tomorrow is actually the worst day in American History from my perspective and in my lifetime. Worse than 9/11. I know that's a provocative statement. Up until 2/1/2014, 9/11/01 was without question the worst day I experienced on earth. But what came from 9/11 was an overwhelming sense of solidarity; it was a day that all Americans could rally to, and say, no, NOT HERE, you cannot have another. Walking up Glebe Road, headed to my car on 9/11 after 3 hours of commuting out of the city, I could make eye contact with everyone and we felt together, despite not knowing each other, despite language barriers.

Tomorrow, I don't think I can make that same eye contact. I don't expect I will feel solidarity in the same way, since some of the people walking around me may want to deport my relatives and friends, may want to eviscerate the educational process for all students (especially my dearest children with special needs), may want to take away my rights. This is why it's worse. I am only one voice to fight for what I believe it right.

We're back to a nation divided. So fractured, I'm a little paralyzed as to where to start.

Be peaceful if you can be tomorrow, friends. We all need kindness, every day. That can be my first goal. It's a great cornerstone upon which to rebuild our national identity.




Friday, January 06, 2017

Post-Holiday Malaise

We all suffer from some kind of letdown after the holiday fanfare that seems to go on forever. I'm not different. I'm spending the weeks after the holidays preparing for the last ever Gonzo's Nose show, and I'm nostalgic but so far dry eyed.

Then...

Then...this came into my inbox:


Jean sent it to me, as we are all unearthing photos related to the band getting ready for the show. She said the caption in her photo album says "Connor's first Gonzo's Nose gig, 6/23/04"

Oh, man.

January makes us tentative now. We're never sure where our heads will be, if it will be extra hard between 2/1 and 2/9 or just normal hard.

This photo makes me cry and makes me so happy. I'm wearing a shirt my dad gave me that I think is still in my closet, and a smile that makes it all the way to my eyes. It's two months after Connor's diagnosis here, and he's out, and looks so healthy (thanks, steroids!) and he's LOOKING AT ME while I'm feeding him.

It's so real, and so normal, and I look happy. Because I was happy. Even though he'd just been told that he had no chance, and that we as parents had pretty much no course but to accept it, we look happy, and healthy, and normal. And Jean caught this because she always, always took photos at shows, and it wasn't restricted to the performers. She documented all of us, as we grew and changed. I was the first band person to become a parent. It's enthralling to see that despite all of what happened with Connor, I still was happy. Happy to be out, happy to share something so important to me with him even though he didn't understand it, happy to have those friends I accidentally came upon by calling a number in the back of a City Paper ad who are now my cornerstone friends.

This picture is going up at home, with his candleholder for the anniversary of his death and then soon after his birthday celebration.

Thanks, Jean, for sending me this important reminder.  Also, for his insanely adorable feet in this photo; I want to nibble those toes. Baby feet are the greatest gift.