Tomorrow is the First Day of the Rest of My Life

 

Tomorrow is the first day of the rest of my life--trite, but true.  Tomorrow is the first day of my last school year working as a Special Education para educator.  I have mixed emotions as I like my job.  Actually, I have the best job in school district because I work with the best student in the best high school.  I have amiable workmates who are the cherries on my work sundae.  So why not keep working?  The reasons are multiple.

Unfortunately, retiring and collecting both my Social Security and my retirement will actually give me a raise.  I have always joked and said that if I kept working much longer the district would expect me to pay them.  I wasn’t far off the mark.  I will be 63 in February so am already eligible to collect SS.  When I first began working with my student when he was a freshman I told him that I wouldn’t retire on him, that we’d graduate together.  He has come to be very dear to me and makes each day a joy.  He says that between the two of us we make one good brain.  That makes me laugh.  I am his hands; he is the brains in our outfit and very forbearing to tolerate spending the better part of 6.5 hours of his days with an old lady.  In some other life he could have been my grandson.  Tomorrow he begins his senior year which means nine more months to help him prepare to make his way in the world.  He will always need and have help, but it’s time for him to spread his wings and find his path, even if it is in a wheelchair.

For over a year I have been living in a commuter marriage.  In June 2012 my husband Dave and I determined that it was necessary for him to return to work for Lockheed Martin to help pay some debts.  He had retired when Lockheed closed their Seattle Flight Service, but had offered him jobs in other facilities over the years.  Finally it seemed an offer that couldn’t be refused, especially when we discovered that he could rent a room from an old friend from his FAA Bakersfield days who happened to be working at the Prescott, AZ facility that offered Dave the job.  The year plus of having a commuter marriage, which I discovered is not all that uncommon (not a good commentary on American life), has been a year of learning for both of us.  Dave admits that in the beginning there was a certain amount of excitement with regards to living somewhere new for a while.  That wore off somewhat rapidly when he realized that life was going on at home without him where grandchildren were growing and changing and I was learning to do without him.  That has not always been easy.  He is home for a few days to attend his mother’s funeral and admitted that he doesn’t want me to get along too well without him.  Anxious to feel needed he had not even unpacked before he started doing chores around the house as if he’d never left.  We get by without him, but I am the first to admit that life is much smoother with him.  Originally Dave’s move to Prescott had an end date of his 62^nd birthday (SS) this month, but a little raise has enticed him to stay into October to sell back his annual leave at the higher rate and get two more pay checks so it’s home before Halloween now with the plan for him to do some projects on our Gig Harbor house with an eye for selling it. Then we can move to our other house in Ilwaco, WA which will presumably be cheaper to live in.

The move to Ilwaco will also put me within six blocks of my nearly 92 year old mother who so far is remaining in her own apartment.  Every time I have to come away from Ilwaco I worry about her despite the fact that we pay for a chore person once a week, one of the neighbors to take out the garbage and for a medic alert system.  This week we are burying Dave’s mother whose birthday would have been Friday, just 11 days before my mother’s.  I don’t think I will ever regret spending more time with mine.

The last, but most important, reason for me to want to quit my job is my own Special Needs daughter.  Amy is 42.5 years old and has Down’s Syndrome.  The average life expectancy for people with an extra 21^st chromosome is 50.  I feel the clock ticking.  She can be frustrating and stubborn and loves me more than anyone ever will.  She is a gift with whom I want to spend as much time as possible.  There have been times during Dave’s absence that she’s been alone for 7 hours a day at home, although for the most part my daughter-in-law has been at home with her.  While she’s happiest with her own company and knows she can reach me at any time by calling my cell phone and I am only ten minutes away, those have been anxiety ridden hours.  Dave is not Amy’s biological father, but she has him wrapped around her tiny pinkie and one of the things that made me fall in love with Dave was a remark he made when we were first “keeping company.”  He said, “It’s nice.  You’ll always have Amy.”  Who could not love a man that thinks it’s not only okay to have my child always with me, but desirable and then was willing to take on a ready-made family that included her three brothers and grandmother.  Perhaps I’m lucky that he didn’t run away and join the circus before 21 years had passed!

So tomorrow begins the first day of the rest of my life and my last first day of school.  How exciting is that?

When You Drop a Pebble, Sometimes It Ripples Back

Being a Special Education Para Educator as well as the mother of a Special Needs offspring has taught me gratitude.  You learn to be grateful for tiny things.  Moreover I have come to judge students by how they treat Special Needs students and whether or not I’d pick them at what I call “The Kid Store”—you know if you just went and picked out a child.  My husband laughs about this last part, but not the first.

Today I found out that I’d made a difference in someone’s life.  A co-worker tracked me down and said that the health tech substitute wanted to see me.  Great, I thought, am I going to have a problem taking my student to the bathroom in the health room after lunch?  I wasn’t even in the ball park.  “Hi, I’m Mrs. Farelli.  My son is Bill.  When I told him I was substituting today he told me to look you up and say hi.  He graduated in 2004.”  Quickly I thumbed through my mental files.  They are full of cobwebs and names have never been my forte, but the minute I put the name Bill with Farelli I knew exactly who she was talking about and I broke into a big smile.

Back in 1999 I moved from the middle school level to the high school with a student who had full blown Autism.  On some levels Michael was/is brilliant, but even acknowledging others was and is difficult for him and I felt at sea in a school full of great big children that were on the brink of adulthood.  Michael was mainstreamed, per the insistence of his parents, so it was that we ended up in a web design class where the teacher considered us as welcome as skunks on a picnic.  Having a student who jumped up to run around and flap his hands every little bit was way too weird.  I knew that I was going to have to work hard to convince the teacher that even though Michael had some weird behaviors, he was pretty computer savvy and really was going to learn something.  I had one thing going for me and that was Bill Farelli.

Bill sat next to Michael at a long line of computers and almost immediately I realized that he was one of those kids I’d take home from the kid store.  Even though Michael seldom even made eye contact, much less talked back, Bill always talked to him.  He rapidly figured out that my student had a mental list of movie titles from which he could tell you whether a movie was live-action or animated, what year it came out and what studio had produced it.  He’d memorized movie catalogues.  Bill would try to stump him and laugh when he couldn’t.  Bill was a reason to look forward to going somewhere I felt so unwelcome.  Now, all these years later, I was standing talking to this lovely boy’s mother!  How lucky I felt to get to tell her how wonderful I think her son is.

“You gave him a gift at Christmas,” Mrs. Farelli said.  “He’s never forgotten that.” I inwardly cringed.  We are NOT supposed to give gifts to students as it can be seen as “grooming.”  I don’t even remember what it was.  It was probably a chocolate Santa.  I do remember what I told him.  I’d told Bill that if he didn’t learn one other thing in his life that he needed to know how powerful the little things we do can be, how his being a friend to my student was like a pebble being dropped into a pond and the ripples went out to touch family and friends.  I guess it stuck because here I was, twelve years later, talking to his mom because he, who is now married and living in CA, had told her to look me up.  See, I was right about Bill.  He’s a keeper!  And I guess I dropped a pebble of my own.

Special Needs Family Members and Governmental Agencies

This blog is for parents of special needs children of all ages. If you have a diagnosis of a physical or mental disability for your child that makes it difficult or impossible for them to function in the “normal” world there are things you need to do. First of all, make multiple copies of medical/psychological findings. Even if your child's disability appears obvious to you, there are people in Washington DC who aren't as observant.

Your child may well qualify for financial help from Social Security and from the Department of Developmental Disabilities.

Next go to the Social Security Administration and apply for Social Security Supplemental Income. The Administration may send you to a psychologist to verify your child’s disability. Be sure to make multiple copies of those findings, too. You think they will keep this information in a file or computer, but don’t bet on it. If you qualify for SSI it may come medical coupons to help off-set some of the medical costs associated with raising a special needs child.

You may also qualify for Respite Care and depending on the level of your offspring’s disability it may be a life saver. It is difficult to find qualified Respite Care givers, but if your child is in Special Education classes there may be Para educators in your child’s school who do Respite Care evenings and weekends or you may know college students who are familiar with our child and can get signed up to do Respite Care.

As your child gets to middle and high school age, get him/her signed up with the Department of Developmental Disabilities. As your child receives training in school toward a job, monies will be available to help support them in a job when they exit public school. If you are lucky, your child will find a compatible job before that support runs out. Depending on your child’s disability you may have to decide between quitting your own job to take up the slack in supporting your child’s job or giving up on employment for your child. I know more than one parent who has chosen the latter route.

With employment will come extensive record keeping of pay stubs and a roller coaster of SSI amounts on monthly checks. In the event that your child becomes unemployed getting your SSI payments restored to their original amount may take you one to two years depending on the cooperation of your child’s employer. You may have to make a career of sitting on hold trying to speak with a human being to convince your child is not working.

The most frustrating part of dealing with the Social Security Administration is when they decide that your child needs to be reevaluated to make sure they have not been cured of their disability. We ran into this when my daughter, who has Down’s Syndrome was sixteen. We had moved from California where we were receiving SSI payments to Washington. When I attempted to get her payments moved to Washington the office in Astoria Oregon, the nearest to our home, decided that she needed to be reevaluated. I couldn’t believe that a governmental office would ask a family to prove that a child still had a genetic anomaly—had not been cured in the night. I assured them that should I awake some morning to find my daughter “cured” they would be the first to know right after the Pope. It didn’t matter.

The entire process of Social Security finding a psychologist to test my daughter took six months. In the meantime we lost her benefits. Simultaneously I lost my job and during that time we lived on unemployment and my meager savings. Finally we got an appointment to see the psychologist. He called to schedule the visit and told me that I would be leaving my daughter with him for a couple of hours. I could go shopping or something since he had no waiting room. No way was I going to leave a handicapped young woman with a strange man, psychologist or no, alone for two hours and I told him so. Well, he told me, I’d have to wait in the hall. When we arrived at the office and I knocked on the door the psychologist opened it, took one look at my daughter and said, “They didn’t tell me she has Down’s Syndrome. This will take about 15 minutes for me to fill out the paperwork.” It took about ten.

It was another month before we received a check for seven months worth of SSI payments, sans interest. In the meantime I’d exhausted our savings, had a car on its last legs, and literally pounded on the counter of the Astoria Social Security in desperation over not having the money. That office now has Plexiglas to prevent irate recipients from doing that or worse.

When my daughter exited the public school system at age 21, no one bothered to tell us that I could receive Parent Care Provider money for continuing to care for her. After initially registering with the Tacoma DDD after moving from Nachotta to Gig Harbor they contracted with a private agency to support her in employment for a few years. After that we were largely ignored until we got a new case manager. That is when I discovered that I could have been receiving Parent Care Provider money for doing what I consider to be my job, caring for my daughter at home. Even after it was offered to me, something of my grandfather’s pride that prevented him from going on “the dole” during the Great Depression, prevented me from applying for two years. Finally I decided that it would be a good idea in case something happened to me so my husband could step into the position or one of her brothers. If you have a special needs child who has reached majority age and you are still caring for him/her at home do not hesitate to apply. We’ve had good case managers and bad ones and the yearly evaluation takes an afternoon, but if you’re lucky you can do it over a pot of tea with a nice person.

Now my daughter is nearly 38 years old and Social Security is once again wanting to determine if some miracle has happened and she no longer has Down’s Syndrome. Why, in this age of computers, recipients who have a genetic condition that prevents them from functioning in the general population cannot have their files coded as such is beyond me. Why they can’t read the findings of the psychologist in Astoria in 1987 and see that she has a condition that is not going to improve, in all likelihood will worsen over time, is also beyond me. So once again I have to prove that she is still mentally and physically handicapped. Paper trail. Parents, be prepared. Don’t assume that only an idiot could doubt your child’s disability. There are idiots working at the Social Security Administration.

If you have difficulty either with a governmental agency or your school district PAVE in Tacoma can be an excellent resource for sorting out problems.