Why South Dakota???

So many people have been asking, I thought I would write about our decision to go. For me, this is about acceptance.

Caring for a child with needs as complex and intense as my daughter is a daily challenge. So many people write about the joys and gifts of having a child who is different or ill that I rarely do... it feels like an over wrought and cliched genre to me. But before I start on the demands and complexities, I want to say, "I get it." I get the pleasure and the wonder of her absolute unconditional love for her family. I revel and celebrate in her accomplishments and ours in supporting her. 

I don't know if I will ever really welcome Rett Syndrome or embrace it as a life lesson as some people have. Perhaps that level of acceptance is way down the road for me. I think I may be in a place where I can forgive myself for not going there. I'm OK hating what Rett Syndrome did to her, and regreting its impact on my family. I'm also more than OK in my role as her mom; I am a fierce mama bear. That is all I am and ever can be as her mother. 

But this life comes with a price. In the same way that no one really gets what it is like to be a new parent and care for a new born until they do it themselves, no one really gets what it's like physically, emotionally and spiritually to raise a child with complex needs who is always on the brink of disaster. Raising children is rewarding, hard work. 

Going to South Dakota to live on the farm is my point of surrender. It is reclaiming a life we always wanted and had almost given up on. For years we have stayed in the Bay Area, near the best hospitals and therapists, hoping for treatment and cure.  Now I know. Nothing we can do here can stop the progression of her illness. And there is a lot there we can do to have a better quality of life, for her and for the rest of us. 

So this is about accepting that I have no control over Rett Syndrome and that I want her to have the best life she can each day. Maybe there will be a cure. But we can hope for that, and work for it too, from there. While we feed the chickens and ride the horses. 

Home Again and Packing!

I had to take a bit of a hiatus from blogging-- things have been in a whirlwind!! Back again and getting ready to move. First things first, I promised a retrospective on our travel adventure. 

Just to create a picture: family of five with three kids ages 8,7 and 5, one service dog, a wheelchair and (thank you, hold your applause) only ONE checked bag and one ACTUAL carryon size bag each! We show up at the ticket counter. Sane people see us and run to get in the security line ahead of us. Business travelers groan. To get a sense of what we are up against, my daughter with a disability is, in addition to having cerebral palsy, autistic, very sensory defensive and tends to have seizures under stress. So we had all that going for us. 

At the ticket counter, the agent changed our seats for the first leg of the flight: the bulkhead is the only place to sit with a dog. People may try to convince you otherwise, and leave this to the gate agent, but the easiest place to do this is the ticket counter at check in.  He could have changed all of our seats but did not. More on that later. 

TSA was fantastic. Having been sent to secondary and practically strip searched when traveling on business, I was expecting the worst. But they were so kind and patient with my daughter. They opened up a second line for the family and put us all through together. We had ensure, baby bottles, gel valium and syringes. No problem. And the dog was great. Seriously, I think TSA agents should have service dogs. For the agents. We had service tags on the dog and a letter from our doctor but did not need any of it. Once they were sure we did not have a scud missile hidden in her chair, we were home free. 

We checked the wheelchair at the gate. Good safety tip, make sure any detachable pieces (like, for example, the seat cushion) are connected to the chair. (Can you guess?)

In Denver, we ran into a few snags. Flights were delayed in and out. So we were late in, and had a flight delayed by four hours. The gate changed of course and so we had to get help finding transport to the new gate. (check the whellchair through?  Note to self, never check it through, have it at all flight changes.) So there we are, and my daughter gets food poisoning (why do these things happen to her and not the rest of us??) from juice that I brought her to take her meds. At this point I went to the gate agent and explained: my child with epilepsy is ill, and sleep deprived and may begin having seizures, I need a quiet place to lay her down for a rest until the flight comes. It helped that I was calm, but obviously on the edge. They brought us a cot, blankets, and took the dog out for a walk. WOW! That is the kind of help we needed. Frontier Airlines is my new favorite!

The rest of the trip went without a hitch, except for the seat cushion, which showed up quickly. And for the second leg we had a second row seat, which we made work, but is no good with a dog. I was too stressed to argue. Next time, I will argue. 

 In fact, we had such a great time that we decided to relocate to South Dakota. So if my writing is a little sporadic for the next month, you know why!! 

I'm looking forward to doing a comparison between California and South Dakota as far as living with a child with a disability goes. Everyone says we should not move out of California because of the Lanterman Act, but so far, I'm not convinced. California, land of my birth, is not my favorite place lately. All that glitters in the Golden State is not gold. Besides, life on a farm is great for kids. And, we are going to get a horse. Hippotherapy at last! 

More later. Thanks for following!

Gina 

Refusing Medical Treatment

There was a great show on Talk of the Nation today on the right to refuse medical treatment based on the family that fled under a court order to provide chemo for their child with cancer. 

I have had both friends and family refuse medical treatments for various reasons, and others who have used every available option. Going through this with loved ones so many times, I have come to understand how nuanced and intensely personal these decisions are, and to respect the place that people come to for their own reasons. 

Parenting a child with complex needs makes these decisions so much more complicated to me than these other decisions. There all the disability rights issues, the moral and ethical issues, the quality of life issues there are also questions of her informed consent. The most important thing to me for any one facing these decisions is what matters to them. Yet how much can I rely on that with my child? Not so much, I think. Does that necessarily mean we do everything we can always, or would I do what I think I would want, or what? 

Right now, I do everything, always. It feels right; she loves life, we love her, that is enough. 

But there are the complex legal issues of refusing treatment for a child-- as a parent, we mostly can't refuse treatment. I could be in a bad situation if I refuse to go to the ER for another seizure and things go wrong. Or if I decide to try to take her off just one of her four seizure meds to bring her back to the world of the alert, without her doctor's consent? What is the role of the medical establishment and what is my role in parenting my child? I am not sure how I feel about that right now. But I appreciated the conversation today on NPR. 

Upside Down

Education is currently upside down. The value of the goals we hold for students is less that the value of what they can learn, and no matter what we pay into the goals, we cannot get there from here.

Since the reductionist view of education took hold under No Child Left Behind, education has focused almost exclusively on deficits- on what students cannot prove they can do. This has led to a number of unintended consequences. These impact special education and other students who share the below and far below basic categories disproportionately but they impact all of schooling as teachers and administrators are encouraged and even bullied by policies and fiscal constraints that force them to keep their eyes on students' failings and ignore students' strengths.

For example, a student with autism has a curriculum that is focused primarily on language and social skills-- things we as non-autists, notice that they "cannot do."

For reasons we do not fully understand, people with autism develop expressive langauge, both verbal and non-verbal, very differently from those of us without autism. Thus, language and social skills are considered the "core deficits" of autism. It used to be thought, in the fifties through the seventies that this was a form of childhood schizophrenia, induced by the trauma of being rejected by the mother during pregnancy. This has long been abandoned as a theory but has been replaced by other behavioral theories focused on developing behaviors that will help the child pass as normal. More recent neurological studies have shown that the brain of autistic children is unique from ours and that their recognition and processing systems for non-verbal and verbal language may be just quite different. So getting them to pass as one of us helps? Well, it helps mostly us. It helps us feel more comfortable with them.

This is a radically unpopular point of view for a mother of an autistic child to take, I have learned in conversations with friends and professionals. But I have been reading many, many self-reports from autistic people, and hearing from my own daughter now that she is able to use her speech device. My own brother had a sensory integration disorder and his suicide confirmed what I am about to say: even when autists pass as normal, they are always painfully aware that they are different.

A friend of mine has a child with autism who is non-verbal. He is grinding his way through a very limited behavioral curriculum and almost grade level work in math. But, he is a genius with computers. When computers break in the classroom, they turn to this eight year old to reboot the system and get them working.

What if he stated working on computers and mechanical things along with his applied behavioral therapy? Sure, toilet skills are critical, who could argue with that. Especially if you have had the privilege of changing a diaper for a nine year old in a public restroom, you know that is an important skill. But isn't building confidence, joy, a sense of mastery over something, curiosity, interest, and potential future job skills as important?

I have another unpopular theory about this. His teachers don't know how to keep up with him. The system is so dysfunctional that it needs him to be disabled. Because if he were actually better at computers than his teachers, they would have to change the way they teach-- and learn more about computers. What if this funny, brilliant boy spent his day fixing computers, programming computers, doing research on the net? What else could he do? What would we discover about his self regulation, his ability to interact and his behavior if he were allowed to study things of interest, which he was good at instead of being shoehorned into a mold which he will never truly live comfortably in? Could we, for example, tolerate or even encourage stimming instead of trying to extinguish it? Stimming, the hand flapping and noise making which many autists report help them organize and calm themselves, may be essential to the autist feeling comfortable enough to work, think and interact.

Imagine a school-- a whole world-- in which a child with a disability could be more successful and masterful than his or her teacher in certain areas, and where ability, not the disability, were the area of focus. What would that look like for your child?

Could we ever let go of our own fears and prejudices enough to create a world in which these young people are allowed full membership and participation? Could we let them be truly differently abled?

Imagine an IEP goal that read: "The student will be able to use an appropriate stimming method (hand flapping, bouncing, rocking) of choice to focus and calm herself during work sessions."

Fighting over scraps

Our local school board, as many will be, is considering deep cuts to special education. Parents of regular educations students are chaffing at the rights protected by law that disabled children have. They do not realize that these rights are protected because forty years ago, a child like mine would not be allowed in school at all. 

This is a copy of the open letter I wrote to our board. 

Special education is expensive, as you and caregivers of children with special needs know. However, it is lean, not wasteful. It is expensive locally because special education has already taken a forty percent cut from the federal government. It is not special education that encroaches on the general fund, it is the federal government that encroaches on education as a whole. Please do not continue to refer to our children or their programs as "encroachments". This blames them for a problem that they did not create and over which they have no control. It is inflammatory and insulting language that disguises the true problem. 

I would ask you to be careful as you lead this community. When resources are scarce, and leadership is willing to play on people's weaknesses and fears, people will protect their own at the expense of others. Very few people rescued disabled people during the holocaust. Even in our own New Orleans, gravely ill and disabled people in hospital were euthanized before they were rescued.  Every one is pro-life and pro-child in public, but the terrible truth is that most people wish my child were not here. The easier and more polite way to say this is to demand that she get less money, fewer services and be less of an "encroachment" on more able bodied, promising children. I know that it is easier to say this than to admit that few care if she lives or dies. 

If I had any wish, it would be that she were whole and healthy. I wish for a cure for Rett Syndrome. But there is none now, and we play the hand we are dealt. So instead, I wish for speech generating devices, a nurse who is on campus when she does have a seizure, a teacher who can inspire her to learn, and do her best, even in her daily pain. I wish for friends on campus who know her name, and invite her to play. For the simple joy of being a child in a community that embraces her and does not blame her for the burden that her disability is. 

Thank you for making some of our smaller wishes for her come true. As small as they are, they may be the only ones she ever gets. That our community sacrifices for her and others like her is to our honor; society is judged by how it cares for its weakest and most vulnerable members. 

I hope that you care-- and that you choose wisely. We are not yet on a rooftop in New Orleans. The levies have not yet broken. I do not have to choose between my children, or between yours and mine. 

Warmest Regards, 

Gina Hale, mother to Emma, age 8

New Year, Old Grief

This will be more of a personal posting than most of the previous. I guess it is the new year that puts me in a reflective mood. 

One of the things about living with deep love for someone with a progressive illness is that the grief ebbs and flows-- like the tide.  This year for me grief was a spring tide at full moon. It breached my seawall and flooded my reserves. 

The low point was a trip to the emergency room by ambulance-- the 10 in a month-- for seizures that would not stop. I watched the nurse team thread the IV, and laid my head on her bed, holding her hand and singing to her. She stopped seizing and slipped into the deep sleep of her post-ictal state before they got her meds on board. When the doctor came in, she said, "I don't know why you keep bringing her in, there is nothing we can do. " That was the high water mark.

But the ebb always has followed. Four months later, she has been seizure free for three months. (There really are some things they can do for her.) But not well, yet. Maybe never. 

I recognize the state I have been in for six and a half of her eight years. It is the same state I was in for the two years my father was dying of cancer. The heightened alert state that comes with dealing with a health crisis. The almost crushing desire to make every moment count. Of knowing the last moment is near. Except that now I must learn to sustain this for a lifetime, twenty, thirty, forty more years. If I live that long. 

Sometimes, like now, the urgency ebbs. As she goes through a spell of being relatively well. Then I have time for other emotions. I want to run after the tide, chase it to the low tide mark and throw sticks at it, rage at it for ruining my sand castle dreams, the imagined life of parenthood. 

I took her two sisters to the mountains to play in the snow this weekend, and we had so much fun! We played until we were exhausted and cold, then drank hot chocolate from our thermos as it began to snow. It was a slice of heaven. And all day, I missed my other girl. All day I was racked with guilt. She was home with my partner, watching movies and hanging out... her favorite. We know she hates the snow. Her poor circulation puts her at risk of frost bite. Of course she cannot come. Of course she is happier at home with dad. Of course I am lucky to have a partner who will be that dad to her.  But I missed her. I missed what might have been. I missed seeing her joy in our shared experience. 

I want her to be well, to be whole. I want joy for her-- for her world to be bigger. She who has had so little, and deserves so much.  I long for a cure. I long for a cure. 

And in the meantime, I long for acceptance. And strength. And a better seawall. That aphorism that god only gives us what we can handle is a bunch of hooey. We handle what we are given if we can. I hope to handle what I am given with a bit of grace and a lot of love. The love is easy. The grace? Not so much.