Buses, trains, and automobiles

What a week!  My transmission has been acting up, so I finally took it to the shop, hoping against hope that maybe it just needed some transmission fluid.  (Fat chance!)  I was told it needed a new transmission, to the tune of $4000.  This was especially irritating since I just bought the car, a 2003 Honda Pilot, last summer.  I weighed the pros and cons of fixing it, a decision I always hate.  Should I pour a great deal of money into it, taking the chance that something else will go wrong, and that it will become a financial black hole?  Or should I just throw in the towel and get rid of it?  Well, the Pilot made that decision a lot easier two days later, when the oil pressure light came on, and then the next morning it wouldn't start at all.  Bye-bye, Pilot!  Fortunately, I left my good ol' Suzuki Sidekick in Texas with Jesse, and can use it as long as it keeps running.  So I'm having it shipped up here.

So I reserved a rental car online yesterday and they picked me up to go get the car.  But when I got there, they informed me that they couldn't take my debit card, only a credit card.  It was then that I realized that my new credit card had never arrived in the midst of the move last fall.  So it looked like we would be car-less until the Sidekick arrives.

So the plan for today was for Gabriel, Tevis, and me to go to the grocery store on the bus.  Last night I was all gung-ho.  After all, someday the guys will have to depend on public transportation, so we should start using it more often, so they can learn how to use it and get comfortable using it.

But this morning, the thought of lugging a very large amount of groceries back on the bus was daunting, plus we also needed to go get prescriptions at another store.  So I discovered that I could rent a car through Hotwire using a debit card after all, and at a very good rate, if we went to the airport to pick it up.  So we took off on the bus, then transferred to the rail system, which goes right to the airport.  After standing in line for an hour (seems like they could have had more employees scheduled on a holiday weekend), we got the car.  Then it was on to Trader Joe's and the drug store.

I was kind of disappointed in myself, that I am so dependent on a car that I couldn't do without one more than a day.  What kind of message did that send to the boys?  At least we did use the public transportation system to get to the airport.  And I resolved today that I'll do my best to plan an errand or outing with the guys every week using the bus and/or train.  As I mentioned casually to them today,  "Someday I won't be around to drive you everywhere, so this is something you need to know."

The inclusion debate

Daughter Leslie, second from right, was one of the original students at Alice Carlson  ALC.

I read several blogs of parents who write about parenting their kids who have disabilities.  Most of these parents have kids much younger than my own.  I occasionally comment on their posts, hoping that hearing from a parent of "kids" who are now adults, might offer a different perspective.  Occasionally I feel slightly miffed that my comments seem largely ignored, as if they are relics from the Stone Age, but I take a breath and tell myself that I'm being too sensitive, and remind myself that they are discovering something new…something that’s new for them. And it’s in the discovery that it becomes real for them.


But in recent days, a debate has been going on on Ellen's blog and Louise's blog regarding inclusion.  I admit that I have been taken aback by the vociferous tone of the debate, especially on the part of those who are adamant that their child (and everyone else's apparently) must be included in all aspects of normal life and should never be "relegated" to the ghetto of activities organized only for special needs kids.  I also feel that there is a certain amount of disdain for those of us who have chosen segregated or specialized programs of any type for our kids with disabilities and for those of us who pushed for the elimination of barriers before many of these parents were even born.  In a way, it reminds me of the disdain that Black Power groups had for the pioneers of the civil rights movement, regarding them as "Uncle Toms" and sellouts.


With so many kids, who had a wide variety of abilities and disabilities, I've had lots of experience with specialized programs and with inclusion.  My kids who were capable of doing academic work at or close to grade level were all educated in regular classrooms.  That includes my daughter Leslie, whose cerebral palsy is so severe that she cannot even feed herself.  When she was approaching kindergarten age, the diagnostician at her school tested her, and sought me out to tell me that Leslie had scored at or above her age level in all pre-academic areas.  "Good, " I said, "then you'll understand why I want her in regular class next year."  The poor woman looked shocked; our district had never mainstreamed a child with such severe disabilities before.  But it was all worked out, and Leslie went through school in regular classes, with an aide to assist her, and she now lives in her own apartment.


But I recognize that there are kids who don't do well in mainstream classes.  I pushed for Marcus to be in regular class in kindergarten and first, and it did not work out well.  In fact, school itself did not work out well, increasing his PTSD to the point that he started running away from school.  I took him out of school during middle school and his PTSD was totally resolved.  When he returned to school for high school, at first he was in his neighborhood school, in generic special education classes that were abysmal.  Goaded by other students, who asked him things like,  "Do you f*** your white mother?," his explosive behaviors  returned.  I then asked that he be placed in a pre-vocational special education program, where he made friends, was able to move to a sheltered workshop at the Lighthouse for the Blind, and was described by his teacher as so responsible that he was like her assistant.


Outside of school, my kids participated in both types of activities.  All went to vacation church school and regular after school day care.  Some went to regular summer enrichment classes, day camps, and church camp in Colorado.  But most also went to camps for kids with disabilities, sports programs sponsored by United Cerebral Palsy, and adaptive horseback riding.  In some of the regular programs, my children got hurt.  At day camp Leslie's seatbelt wasn't fastened and she fell out of her wheelchair and broke her collarbone.  At day care, Marcus got a corneal abrasion when another child accidentally scratched his eye.  I'm sure Marcus didn't make many friends at church camp in Colorado, because no one helped him locate the showers, and he stank to high heaven when he got back home.  One time I helped with Gabriel's Campfire group, and it hurt me so deeply to see how the others ridiculed him.  One advocate of inclusion just signs her kid up for t-ball and any other activity she chooses, because it's his "right," and I guess she just expects the staff to step up to the plate, so to speak.  That, in my opinion, is the path to possible disaster.  Aside from the safety factor, one has to acknowledge that it takes leadership from the staff to make inclusion work, and, if the staff is ill-prepared or fearful, they will not have the necessary skills and commitment to figure out how to meet the disabled child's needs in the group.


Lastly, I know that special needs parenting has its ups and downs and frustrations.  Everyone wants their child to have every possible opportunity and chafes at limitations.  We still have a long way to go to achieve a society without barriers, especially to employment.  But it's always a good idea to reflect on the progress we've made.  When I first got involved in working with the disabled, doctors still advised parents to place their children in dreary state institutions.  When I was rearing my children, I had to carry my daughter into restrooms because her wheelchair wouldn't fit, and I must have bumped Leslie and Cedric up and down about 10,000 steps in their chairs because there were no ramps.  Of course, we should not rest on our laurels, but today's parents should acknowledge those who paved the way, instead of denigrating their efforts because they "settled" for less than full inclusion.

Tips for parents of kids with disabilities

Marcus unloads the silverware from the dishwasher, learning responsibility at an early age.

I wrote this essay on Helium.com several years ago and wanted to share it here on my blog.

As an adoptive parent to several children with disabilities and as a pediatric occupational therapist, I would like to offer some tips to parents of children with disabilities. They are gleaned from my own successes and mistakes, as well as the various parenting styles I have observed in my work.

1. Don't be afraid of labels. No parent likes to have their child labeled, whether it is as the class clown, a troublemaker, autistic, or mentally retarded. One of my children suffered a severe traumatic brain injury as the result of abuse at an early age. Even as his cognitive deficits became more apparent over time, I insisted that the schools put a "Traumatic Brain Injury" special education code on him, not a "mentally retarded" code. When he graduated from the public schools, I came to regret that decision. As an adult, there are virtually no services for a brain injured person, while there is a vast array of programs and services for the mentally retarded/developmentally delayed. You know your child is much more than a label, but try to accept the label as a ticket to better services for your child.

2. Be skeptical of miracle "cures." Having been in this professional field for almost 30 years, I have seen many miracle cures come and go. There was patterning, neural pacemakers, rhizotomy, etc. Some people exhausted their financial resources or sacrificed their family life for what turned out to be false promises.

3. Walk the fine line between making your child feel special and making him self-centered. One of my children has severe cerebral palsy, but normal intelligence. I quickly saw that most folks assumed she was mentally delayed and they tended to ignore her or talk to her as if she were a baby. So I went out of my way to include her in social situations, brag about her accomplishments, and, in short, make her the center of attention. My strategy backfired, in that she became self-absorbed, always expecting to be the center of attention. Yes, your child is special, but no more special than every other child.

4. Let your child be a child. You may feel that, with all the therapy, medical appointments, and educational needs your child has, you have to make every minute count. But your child has other needs: to play, to develop his own interests, make friends, be goofy, daydream.

5. Encourage your child to become independent. It is often easier, quicker, or less messy to do things for your child, but you won't be around forever. Let your child develop that sense of accomplishment and competence that we all need. And if your child does need help, teach him to ask for it in a gracious way.

6. Fight for your child's rights, but teach him responsibility at the same time. If you insist that the school buy your child an expensive notebook computer to do his school and homework on, it is important that he understand that he has to take care of it and that you do expect him to complete his assignments.

7. Help your child deal with uncomfortable social situations in a positive way. Fortunately, this is a much easier task than it was 20 or so years ago when I began rearing my children. Thanks to the push for mainstreaming, most children today have had some experience in being around and relating to peers with disabilities. But your child may still encounter stares or remarks in public. Maybe it makes you mad or uncomfortable, but try to remind yourself that usually the person who is staring intends no harm, but is only curious. Often just smiling and saying hello diffuses the situation. I often think of the time I was at Six Flags with my son who had Tourette's syndrome, with many facial tics. We were in the line for a ride, and kept passing the same kid each time the line snaked through the aisles. The other kid kept staring and staring. I began to feel anxious and tried to stand between the kid and my son, so as to block his view. Finally my son leaned over to whisper in my ear, "See that boy over there? He's got an eye problem...he keeps staring!" What insight...my son was able to see the situation as the boy's problem, not his!

8. And lastly, take care of yourself! Everyone has a bad day...forgive yourself for your impatience, grief, or mistakes. Try to get your rest, find support, make friends, pursue your own interests. Don't let yourself get so drained that you have nothing to offer your child.

I hope these tips will be helpful. I like to remind myself that there are lots of different styles of parenting, but most parents are doing their best for their children.