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. 

Marriage and special needs children

There have not been many strong studies on the impact of caring for a child with disabilities on marriage, according to an article in the Wall Street Journal, which reviewed a such few studies. I have known quite a few families who care for children with disabilities who stay together, and of many single parents caring alone for a child with special needs, and know also that many, many of the children in foster care have disabilities. 

Does the stress and grief bring us closer than we would be if all of our child were typical? 

There are times when I know we would have been happier with a different experience. I could have lived my whole life without hearing the diagnosis over the phone. And there are times when  I knew I was with the right person. After getting the diagnosis over the phone, where else in the universe could I have been but in his arms?

But I do know this. Life would have been easier, but I have known many people with much easier lives who are unhappy. 

On the other hand, would I, would we, be happier without Rett Syndrome? Hell yes. I would trade every happy moment, my very life, for a cure. Take me, only take this from her. From us. 

Really, 'would we be happier?' is not a productive question. There is no imagined other happier life, only this one. All we can do is play the hand we hold and we hold hers. 

And I do know another thing: I could not have done this with my first husband. That marriage  could never have been improved with the stress of raising a special needs child. 

And this: If my marriage now has not been improved by the stress and grief of raising a special needs child, what has drawn us closer is our ability to hold each other in grief, to turn toward each other with compassion when one of us is ready to lash out or collapse, and to work together in adversity. And sometimes sheer stubbornness. 

As my husband says now while I write this: I suspect it is all in how people respond. 

It is about the marriage, not the children, not the stress, not the mortgage.

Do you have some tips for keeping a marriage strong while caring for a special needs child? Here is our starter list:

• keep a sense of humor: raising a child is life in the theatre of the absurd. laugh. cry when you need to and laugh a lot. 
  
• keep a united front: the outside world can be rugged. be each other's champions
  
• keep asking for help: don't be to proud to use all the public and private resources you can, raising a special needs child is a marathon, and an expensive one. You may be doing this for a long time, and without help, the task can easily outstrip your financial, emotional, spiritual and physical resources.
  
• take breaks. with each other, with your other kids, alone, with friends. build a community and let them refill your cup. refill theirs as well. make friends before you need them.
• build a marriage team. Know which of your friends are also friends to your marriage. talk with them when it gets to be to much so that you have a safe place to vent, talk and problem solve.
• know when to slam a door and when to let things go. apologize. forgive.
• know when to get help or even to walk away: our pediatrician told us when we were spending hours walking a "colicky," inconsolably sick child that colicky babies are often abused. The same goes for children with very challenging behaviors. Protect yourself, protect your child. Get help, get away, get out before anyone gets out of control

Got ideas? love to hear them...