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 

Traveling: Wheelchairs, service dog, meds and all

We are leaving today on a 10-day, four airplane, cross country trip-- two parents, three kids, a service dog and many items which will arouse the curiosity of the TSA, including a child with sensory defensiveness. Wish us luck! For those of you traveling with someone with a disability, here are some things we learned in our prep:

TSA: the usual bans on wierd electronics, gels, liquids and stuff can be waived so that a person can bring meds, devices etc. with them. You can read the TSA info here. 

Service dogs: Many people have written about travel with service dogs recording various challenges, you can read another point of view here. TSA and airlines will allow service animals in the cockpit of the plane. TSA requires service animals to be visually identified. Although the federal laws regulating service animals currently prohibit discrimination such as requiring a license, many counties and states do have separate tags for service dogs. Ours has a county tag and we are carrying an affidavit from our doctor, just in case. We informed the airline when making our reservation and they were very helpful at least over the phone. We'll see how things are at the airport! 

Wheel chairs: We are gate checking ours and getting a lift into the plane seating. Gate checking makes me nervous, they better not lose it!! Also, we have to change planes, so they are meeting us with a cart and assisting with transfers. 

Meds: we have all kinds of meds, liquids, solids and gels. Also, over our luggage allowance. The airline is not charging extra for her extra bags and TSA assures us that although it will take longer to screen us, that simply declaring our stuff at the screening point will keep us out of trouble. Everything should be allowed through. 

Rental cars: We will rent a van-- this time we don't need a ramp, but we did find this disability van rental service. 

Easter Seals has a great website on accessible travel in many locations, including public transit, hotels, rental cars, airport etc. Check it out!

Of course, that is all planning and if I know anything about travel it is that nothing goes as planned. I'll report back afterwards with a retrospective! Wish us luck!

Regional Centers Denying services

Seems like everything I say, write and think about lately starts with "in the current economic climate..." but the truth is little has changed for my kid at school or in the regional center. For five years, Regional Center has denied Augmentative Communication services and devices for my child at home. This year, they may provide them. It seems like they should have all along, under the Lanterman Act. That is also what Protection and Advocacy described in a Q&A for families. 

A friend and local advocate shared this thought with me:

"Now more than ever the process involves getting the denial in writing and then appealing it.  Every family is being asked to take a cut in services and only those that appeal are even getting consideration.  It's wrong, very wrong, but that is how the RC is operating currently.  Complaints to the Client's Rights Advocate at Disability Rights California (formerly PAI), should be copied to the case manager, the supervisor of the unit, and, in Concord, Ella Liggins, the Associate Director of Consumer Services.  In the main office in Oakland,  Pam Thomas is the Director of Consumer Services, and the Executive Director of RCEB is Jim Burton.  I recognize that it is a few extra copies to send but until the RC gets the message that parents are not going to stand for unreasonable cuts, it may be necessary.  Another critical part of this process is to be certain that all services are written in the IPP.  While this sounds like a given, many parents have discussed services with the case manager and they have never been transferred to the IPP. It sounds simple but it is not always done."

A Modest Solution

Our board members will be forced into the untenable, miserable position of having to make additional cuts to the MDUSD budget. I do not envy their position, nor the pressure they will feel from panicked parents who see our infrastructure crumble in front of our eyes. As a parent of three children, one with disabilities, I feel this pull and tug daily. Yet the child I represent at board meetings, state budget meetings and in the community is my child with a disability. If you have a child with a disability, you know why. The threat that all children face now is not new to us. Our kids cost more. That is reason enough for resentment. 

Here are some objections and refuting talking points I am keeping in mind as I work with the board, neighbors, friends and legislators to advocate for our students and help others 'walk a mile in our kids walkers.'

The first and most important point is this. We are a community. Either we serve students with disabilities or we hang a sign at the district border that says "We don't serve your kind here." If we do decide to do the right thing, the civilized and ethical thing, then we should do it with as much pride as we do, say, football, band, robotics, and Honors courses. Right now we are uncommitted. We have parents irate that students might have to pay a fee to play extracurricular sports. At the same time, some of our students have to sit on the sidelines at recess because they cannot get to the play structures. We have a district that has spent tens of thousands of dollars in court, losing the argument that playgrounds don't have to be accessible to all students.Where are the indignant parents speaking for the disabled? Arguing that special education costs too much, not crying that those kids can't play. What does the board say? Nothing in defense of our kids, no apology for the playground structures, no shame at the fiscal waste. 

1. Misconception: We need to cut spending. The governor and Republican minority claim we can cut spending and get out of the budget crisis. This is a revenue problem, not a spending problem. A majority of voters locally and throughout the state support tax increases. School districts have cut to the bone. The state needs to raise more money for the services we, proudly and rightly provide our citizens. We used to be an educational leader, now our per student spending matches our test scores: lowest in the country. If we want a first class educational system, we need to spend at least as much as New York. That would require doubling our per pupil spending and place us roughly in the top third of states.  Until then, we get what we pay for. 
   
2. Misconception: Special education is too expensive! Parents of regular education students have noticed that special education takes up 23% of the total budget. At about 11% of the total population, that means our kids with special needs are roughly twice as expensive as regular ed kids. Actually, 2:1 expenses is a really good ratio. While we have some students who require minimal services, I know that many children are more severe. Mine for instance has an aide, a nurse, and occupational therapist, speech therapist, assitive technology specialist, physical therapist, computer and a class of eight. Her education is more than 10 times what her sister costs the district. We have managed to keep our program costs reasonably low and our services for special education students are something we should be as proud of as our sports and Advanced Placement services. 
   
3. Partial truth: There is a lot of fraud, waste and abuse in special education! The district should be forthcoming about waste and abuse. It has spent significant sums of money in court fighting  students' rights. The money now allocated to resurface playgrounds is an example. Had those been properly installed, or had the district remedied the improper installation at the request of the Spieler class rather than going to court to appeal, that money wasted would now be available to hire teachers. The district should be as compliant with law as possible; it is the right, and least expensive thing to do.

Systematic abuse, not excessive service for disabled students, is the norm. Remember the nineties and early 2000's? Gosh, life was good! Unemployment was low, housing prices were rising fast, the governor still had seven Hummers. That was the economic context under which the consent decree in our district came into being. When money was flowing and business was booming, the district was forced to admit systematically violating the rights of students with disabilities. They agreed under a consent decree monitored by the federal court to set aside 20 million dollars over ten years-- a scant 2 million a year-- to remedy their ways. During the consent decree they managed to waste additional money fighting students with disabilities, wasting staggering sums of money and then having to do what the law required anyway. Now that times are bad, they say they cannot afford to special education. What's new? The Nazi's used this same propaganda to incite support of forced sterilization and euthanasia of the disabled. No one ever wants to spend money on children with disabilities. That is why we have IDEA and ADA. Otherwise, we might eat our young when we got hungry enough. 

Lest we forget

Recently in my home school district members of the board have been rallying to "study special education" to make sure it is "cost effective." Members of the community, alarmed by the violent cuts proposed to the education budget by our so called governor have been calling for cuts to special education.

How predictable that under stress communities would go after the weak and disabled as scapegoats. This same community that twice has refused to tax itself to pay for the education our own children. Are our citizens taking their torches and pitchforks out to the homes of the baby boomers who have benefitted from prop 13 all these years? Many of them paying less in property taxes all year than many of our young families pay in mortgage each month? Are they going after the governor, who proposed the cuts, or our Republican legislators who have taken a blood oath to not raise any new revenue, no matter what? Do they think that, maybe, under the circumstances that athletes could pay for extra curricular activities so that children with disabilities could have nurses, aides to change their diapers or speech therapy?

No, they go after children with disabilities. "Get the gimps! They cost to damn much!"

Americans after WWII love to vilify the Nazis. What has always scared me about Nazi Germany is not how alien it is, but how human they were, how recognizable. In that great Christian democracy (yes, Hitler appealed to Christians, especially Protestants, AND he was elected. Look it up) in that great democracy, when times got hard and Germans were standing in bread lines, it was the disabled they went after first. The tens of thousands of people with disabilities who were murdered were just the rehearsal for the Jewish Holocaust. They are not even remembered. And, it began here, in the States, in California. What scares me about Nazi Germany is how human they were, and how human we all still are. 

The following is from the National Holocaust Museum site:

Popular films such as Das Erbe ("Inheritance") helped build public support for government policies by stigmatizing the mentally ill and the handicapped and highlighting the costs of care. School mathematics books posed such questions as: "The construction of a lunatic asylum costs 6 million marks. How many houses at 15,000 marks each could have been built for that amount?" (emphasis added).

Nazi Germany was not the first or only country to sterilize people considered "abnormal." Before Hitler, the United States led the world in forced sterilizations. Between 1907 and 1939, more than 30,000 people in twenty-nine states were sterilized, many of them unknowingly or against their will, while they were incarcerated in prisons or institutions for the mentally ill. Nearly half the operations were carried out in California. 

A last thought from EUGENE V. DEBS

"Now my friends, I am opposed to the system of society in which we live today, not because I lack the natural equipment to do for myself but because I am not satisfied to make myself comfortable knowing that there are thousands of my fellow men who suffer for the barest necessities of life. We were taught under the old ethic that man's business on this earth was to look out for himself. That was the ethic of the jungle; the ethic of the wild beast. Take care of yourself, no matter what may become of your fellow man. Thousands of years ago the question was asked; ''Am I my brother's keeper?'' That question has never yet been answered in a way that is satisfactory to civilized society.

Yes, I am my brother's keeper. I am under a moral obligation to him that is inspired, not by any maudlin sentimentality but by the higher duty I owe myself. What would you think me if I were capable of seating myself at a table and gorging myself with food and saw about me the children of my fellow beings starving to death."

"The generosity of the voters"

Yesterday I went to Sacramento to speak to the legislative budget committee on what the committee chair sarcastically called "the governor's revised revision of the May revise" of the budget. 

The room was packed, standing room only, and the line went out the hall. During the public comment period, which lasted well over an hour, I joined citizen after citizen in appeals to our legislators. Each of us begging them not to cut education in our state further, describing the crippling blows our local schools and services have taken. No one spoke in favor of smaller government, less taxes or more cuts to education or health and human services. Yet the majority sat powerless to act, because of the tyranny of a few ideologues who have sworn a blood oath with their party to raise no new revenue, no matter what. 

In California, it takes a two thirds vote to levy any new tax. In spite of a 59% vote in favor of new taxes in our district, we cannot raise money to stem the hemorage created by the violent slashing of the state budget. People are literally jobless, homeless and hungry,  yet they sit smug and satisfied to do more harm.

One Republican member asked about the fraud, waste and abuse in In Home Supportive Services for the disabled that were, in his words "taking advantage of the generosity of the taxpayers." To him, I say this:

•  These services are so hard to get, I can't imagine fraud waste and abuse in the system. If there is, you risk killing the patient trying to excise the last of the cancer. Seriously, how much more can you spend trying to prevent unnecessary expenditures? 
  
• Second, charity and generosity are neither if they are given with resentment and used to shame the recipient. Generosity and charity exalt the giver and the receiver. That which you do unto the least of these...
  
• Third, and most importantly, programs for the disabled are not built by generosity, they are built by wisdom. You are likely to need these one day. 

As one great legislator once said, you will never be black, you will never be a woman, but you may easily become disabled on your way home. 

Many people have told me that my daughter was born so that I could learn-- if there is a force out there that guides the life experiences we have in order that we may learn compassion, humility, and generosity first hand, may that force bring those lessons to the Republican party of California. And may no one else need suffer while they are learning.