August 21, 2009

My Grandfather, the Helper Monkey

Posted in Death, Flying, Helper Animals, Monkeys, My Grandparents, Steve, Travel at 8:50 pm by jlewicky

In my last post, I promised you a story about my first experience with an assistance animal.  Here it is -

Once upon a time, there was a wonderful grandfather named William Larue Hall.  He Loved (with a capital “L”) his family.   He and my grandmother (also a wonderful woman, but this post is not about her) lived with us when I was born, and moved to a new house a mile away before I turned one.  My brother and I stayed with them a lot, in the summers and occasional overnights.  We had Sunday lunch at their house every week.  Needless to say, my grandparents had a huge impact on my life.

Pop was a butcher, and always tried to get us to eat things like tongue.  He always teased/threatened to pull our loose teeth with either a string and a doorknob, or a pair of plyers.  For whatever reason, he had screwdrivers in drawers in almost every room in the house, but he could never find one.  He said things like “You’re a good girl, no matter what anyone else says” and “I’m just sayin’, s’all” and used words like “ornery”.  He came to every graduation, play, choral concert, band concert, and athletic event of every grandchild except the four who lived in Texas.  As he grew older, he mixed up our names, but to be fair, he had over 40 grandchildren and great-grandchildren.  As he got older, he also got colon cancer.

I lived 3 hours away from my family then, and Steve lived 3000 miles from me.  I flew one time each month from Maryland to California to see Steve, and he flew back once a month also.  The other two weekends I drove up to see Pop.  He told me stories of being a teen during prohibition – you could always buy moonshine for a nickle somewhere in town.  Before I ever knew I’d be going, he asked me when I was going to move to California to be with Steve.  But he soon got weaker, and was moved home for hospice care.

I was there one weekend when it became clear that his death was very near.  Pop knew.  He called each of us to his bedside and spoke to us privately.  All he wanted to know from me was if I “would be OK”.  Of course I would, Pop, of course I would.  Don’t worry about me.

I was supposed to meet Steve in Chicago the next weekend for his college reunion.  My parents urged me not to change my plans, because Pop was in a coma, and I had already said good-bye.  Services would not be held until after I was back.  So I went.

On Sunday morning when I called to check in, he had died.  I was flying out of Midway, and Steve was flying out of O’Hare.  Steve had to drop me off several hours early in order to return the car and make his flight, so I was on my own in the airport.  At that time, Midway looked more like a bus station than an airport, and slightly less comfortable.  I had my crocheting with me, and I sat down to work on it, crying my eyes out.  I tried to avoid other people, but the benches were in the middle of the room, so I just kept my head down.

Three elderly women came in with a monkey and sat right behind me so that we were back-to-back.  I heard them tell somebody that he was a helper monkey for one of them who had arthritis.  One woman went off to change the monkey’s diaper.  I can imagine that dirty monkey diapers would make anyone cranky, but these women were downright ornery.  Anyone who came to see the monkey was immediately rebuked and sent off. 

Eventually, people realized that they could just stand in front of me, peer past my head, and look at the monkey, who was hamming it up for them.  So here I am on an unbelievably uncomfortable bench, crocheting and crying uncontrollably, and people are stopping in front of me and laughing.  Each time I looked up, a person would step toward me and whisper, as if in confidence, “Do you know there’s a monkey behind you?”  After the 2nd or 3rd time, I couldn’t help but laugh.

If I were to believe in ghosts and spirits, I would have to believe that Pop sent that monkey to check on me, to see if I were indeed OK.  It’s just something he would have done.

Are People REALLY that Clueless?

Posted in Autism, Elopement, Helper Animals, Peers, Responsibility, Safety Concerns, School, Special Needs, http://JonsRoom.com at 12:00 pm by jlewicky

I love this.  A school district tried to bar a student with autism from bringing his helper dog to school.  The parents sued and won.  In his ruling, the judge said that any of the district’s 230 special education students must be allowed to bring animals to school.  The superintendent then said, and I quote, “If 230 students were to bring animals, it would be catastrophic to the degree it would be uncontrollable and very unhealthy to the students.”

Does anyone else see any humor in this?  Does the superintendent really think it’s that easy to qualify for a helper animal, and that all 230 students’ families could afford them?  C’mon, if you’re going to argue, you can do better than that.

The school did argue that it would be disruptive for students with allergies and students who were afraid of dogs.  To address the first point, the dog is a hypoallergenic breed (bouvier). 

As far as students who are afraid of dogs, I can personally relate to that, but, well, the school will have to deal with it.  Hopefully these students can be kept as far away as possible.  It’s inconvenient for the school, sure.  But what is worse, this inconvenience, or the severe outbursts, consumption of inappropriate things, and bolting away from adults that this child was prone to?  Properly trained assistance dogs are calming to children, and help keep them where they need to be.  Wouldn’t the school prefer to have the dog over the risk of having the child escape?

The parents were willing to have training sessions for the teachers and teaching assistants, as well as assemblies for the students to educate them about assistance animals.  Above and beyond, if you ask me.  The school should be responsible for that.  Bravo to the parents.

So now we’ve identified another topic about which the general public needs education – assistance animals.  Laws are already in place about this, shouldn’t that be enough?  Oh, who am I kidding, if disability laws were enough in themselves, I probably wouldn’t need to write this blog.

Here are links to both news stories we found on this:  School sued over ban on autistic boy’s service dog, and Judge rules to allow service dog.  Enjoy.  Thanks to JonsRoom member Susan who first brought this story to my attention with this post.

Coming soon:  My first encounter with a helper animal.  Stay tuned.  It’s a very, very strange story.

August 19, 2009

Transitions

Posted in Autism, Expectations, Inclusion, Jon, Kate, Least Restrictive Environment, MD, Participation, Peers, Responsibility, San Francisco, School, Siblings, Special Needs, The Future, Therapy at 11:21 am by jlewicky

I took Kate to her Kindergarten assessment this morning.  There was a girl there hanging onto her mother’s hand for dear life.  The teacher kindly and gently guided her back to a room, without her mother.  The mother turned toward me and said, “I’m a mess, but I’m trying to hold it together for her.”  I looked up, and the girl was happily bouncing down the hall, holding the teacher’s hand.  That’s when I realized that it was the mother, not the daughter, holding on for dear life.

I smiled at my new friend, and told her that her daughter was OK, and that she would be, also.  That after you’ve been through it a few times, it’s easier.  I didn’t tell her that I’d been going through this for 4 years, since Jon was 3 years old.

Memories come flooding back to me.  Of choosing a school for Jon in San Francisco, based solely on the “vibe” I got from the teacher when visiting the classroom.  Of driving Jon on that first day, and facing impossible traffic and parking, adding to my anxiety.  Jon was riding the bus soon after that, and I remember how nervous that made me.

Next came our move to Maryland.  I came out for two days to scout schools.  We held Jon back a year, so he would had one more year of preschool after we moved.  My next trip was to find a house, a decision largely made based on the proximity to my favorite schools.  I couldn’t help but feel enormous pressure, that this decision was going to affect Jon for the rest of his life.  The realtor showed me 25 houses in 2 days, then Steve came and we chose, put in an offer, and were lucky enough to be in contract before we got back on the plane.

Then the first day of school in Maryland.  Jon and Kate were going into the same special needs preschool program, Jon with his IEP, and Kate as a typically-developing peer role model in a different class.  More anxiety.  What if I chose the wrong school?  What if it wasn’t fair to Kate to put her with Jon, where she might feel some sense of responsibility for him?  Shouldn’t Kate be allowed her own life, her own friends, her own typically-developing friends?

Now, Jon and Kate are changing schools.  The preschool and Kindergarten special education programs are regional, and now they must go to the local zoned school.  Kate is showing anxiety about the unknown.  She has too much of me in her, but she’s more resilient than I, and she’ll be running the place in a few weeks.  So I’ve directed most of my anxiety energy to Jon.

Jon will be included, with a full-time aide, for the entire day in 1st grade.  Any pull-out tutoring is to happen in the classroom, except, of course, for speech and occupational therapy.  In Kindergarten, he still left the room for tutoring, snack, and rest time, but that won’t happen now.  There will be new kids to meet, and many of them will not have been exposed to autism.  I expect Jon to have a hard transition, and it breaks my heart.  But he couldn’t stay at the old school for another year, and he would have to transition eventually.  Better, a good friend told me, that he transition now before the kids form cliques and get meaner.  Great.  Now I can also start worrying about 2nd grade politics.

So far, we’ve been extremely lucky.  It turns out that the school bus is an important part of Jon’s day, easing his transition to and from the day.  Both San Francisco and Maryland schools were an amazing experience for Jon, and Kate has developed social and leadership skills.  By the end of the 2nd year in Maryland, Jon was included in the regular Kindergarten class for most of the day.  He developed friendships and was invited to birthday parties.  The teachers and program administrators listened to me and considered my ideas as well as their own.

Still, I can’t help being scared and nervous about the upcoming year.  But you know what?  It will work out.  And if it doesn’t, we’ll fix it.  Not that it will be easy, but we’ll do it.  That’s what parents do.

Transitions stink.  They’re hard.  But they are a part of life.  Without them, we’d never know what we could accomplish.  I need to take a lesson from Jon and Kate, to face transitions head-on and work through them.  Going to a new school will be an education for all of us.