Author Archives: patriciatoomey

The Things You Miss

The Things You Miss

Patricia Leonard-Toomey

Many years ago my husband and I decided that the best thing we could do for our family was to have our daughter Devon remain living at home with us for as long as possible.  When she was 3 years old we were advised that having someone with such significant behavioral concerns remain living with her family would be a difficult thing.  We were basically told that we would never have a “normal life.”  As time progressed we were reminded at least one time per year that a residential option would probably be best for “the family.”  We always declined.  Devon is 30 years old now and still lives at home.  It is never easy, but this was and is our choice and we take it one day at a time.

In my position at CAR, I often hear of families who take vacations with their children, of opportunities available to them because their kids can fly, stay in hotels, stay with relatives while the parents go away, stay with caregivers while the parents go out at night etc.  I am always happy for them, but I know with certainty that there are others like me….people who have never gone on vacation with their families, people who except for one time per year [thank you CAR hayride] who are not out after dark…people whose children must sleep in their own beds every night with the night routine down to a science where nothing can ever change.  Every family has different challenges, but sometimes I think we have to acknowledge that there are many people and families who are restricted from even the opportunity to “relax” or have a day away.

Please note again, that I am not complaining.  It has always been our decision, and I cannot envision a life without the day to day interaction with my daughter, but once in a while the things I miss out on become a little bit overwhelming.  Some of the things you miss are wonderful family events, some are difficult family events.

For example, I was only able to attend 1 ½ hours of the 4 hour wake we had for my Mother.  I had to get home to meet my daughter.  I did not have an opportunity to attend my Father’s wake.  The weather was a factor in this, as well as my daughter’s serious upper respitory infection.  I did make it to the funerals.

I missed my older daughter’s graduation from Medical School and Match Day because she was in Chicago.  I did not have a chance to attend the rehearsal dinner for her wedding even though it was in Providence, because we felt it was more important that I be at the wedding.  It was a beautiful wedding and I was so happy to be there for the entire event.  Devon had a great time too.  My older daughter was not alone for any of these events.  My husband and my father were always there for her, but it was still hard for me.

Over the summer I became a Grandmother to the most beautiful Nora.  She was born in Texas and in August moved to Kentucky with her parents [my daughter and son-in-law.]  Their careers as a Developmental Pediatrician and EP Pediatric Cardiologist have dictated where they live.  Because we cannot travel and they had to move across the country I have never met my Granddaughter.  I can Face Time and Skype and I have many pictures and videos, but it is not the same thing.  I want to hold that beautiful baby in my arms.  I know it will happen someday, it is just hard to wait.   Some days the restrictions I have on my life are harder to accept than on other days.   This major event was just another reminder of some of the things we have missed.   I know I am not alone in this and I believe it is important to acknowledge some of the more difficult and maybe unexpected issues some of us face at certain points in our lives.

 

 

Advertisements

When You Have to Say Goodbye

Patricia Leonard-Toomey

“Goodbye Granddad’s house.
It is me, Devon
I am really going to miss you.”
So began the end of an era.
My Mother passed away suddenly eleven years ago.
My Father passed away quite suddenly after excessive shoveling during the winter storms of 2015.
Nothing has been the same since then. For those of you who have been around for a while, and remember some of the discussions on whether or not people with ASD exhibit grief and understand when someone has died and they will not see them again, please let me put in my two cents. In my house, the grieving process for two of the most important people in Devon’s life carries on to this day. There are weekly discussions about whether or not my mother and father will “come back” for Christmas, or Thanksgiving, or Devon’s birthday. There are episodes of crying because she misses them so much. As difficult as it is to hear how upset she is about this loss, I think it is wonderful that she is able to express herself so clearly and we can talk about all of the good memories we have and how much she and her sister meant to them.
And now for the house. There are only two places in the world that Devon has felt truly comfortable and less anxious. When she is at our home with her family and all of her “things,” and when she was at my parent’s house. It has never really been just a place we would visit; it has been more of a second home. We have never had Thanksgiving, Christmas, Birthday parties, Graduation Parties, etc. anywhere else. Their home was a more central location, could accommodate more people, and it was just a wonderful place to be. For almost all of Devon’s life, we would go there every Saturday to see Nini and Granddad. This was her place, and these were certainly her people.
After my father died, my sister, brother and I were able to have the house updated before we put it on the market for sale. The changes inside were pretty substantial. When we took Devon for what would turn out to be her last visit to Quincy, she initially refused to go past the front hall because she said this was not Granddad’s house, this house was broken. She sat on the front porch for most of the afternoon. It is a great front porch and she always enjoyed sitting there.
When I was finally able to get her into the house, we went upstairs to see the bedrooms and that was when she told the house she would miss it. This was what I had been dreading all along. This was not just the fact that now my parents were gone, or that the house would go on the market and we would no longer be able to visit. This is a total change of a way of life. This means that our options are now more limited than they were before. If you only have two places where you are comfortable, and one is gone, there is no way that could be considered a good thing. I am certain that some people would be able to adapt and make new opportunities. Life is not that easy for us, and I struggle to see this as a way to create new memories. The old memories were working.
We closed on the house September 29th. It is no longer our family home.
I am concerned about Thanksgiving. This will be the first real test of how the rest of our lives will go. It will be interesting.
Goodbye Nini and Granddad’s house. We will all miss you, forever and ever.

Letting the Light Shine by Dennis Polselli

Letting the Light Shine

Dennis Polselli

Public Relations Coordinator

“Just so, your light must shine before others, that they may see your good deeds, and glorify your heavenly Father.” {Matthew Chapter 5 verse 16}

I retired six years ago from a job I loved very much, the Disability Services Coordinator at Framingham State University. Like all jobs, there were good days and bad days, but one of the things I truly regret was not sharing some of my accomplishments with my parents, brothers, and sisters. Some of my accomplishments were covered in the Metrowest Daily News, and some coverage even appeared in the Boston Globe. The college had requested that I establish a Disability Services Office in 1994, because they had no formal department to coordinate services to provide accommodations to students under the Americans with Disabilities Act [ADA] One area of difficulty was to coordinate 2 ASL interpreters per student for deaf students attending class. At times I had difficulties getting ASL interpreters, but this was a necessary accommodation. I came up with a position similar to CART Reporters, called a computer transcriber. My staff and students transcribed lectures from the professors word for word.

In 1995, I started the MetroWest Radio Reading Service which provided the reading of daily newspapers, magazines, and books. There were forty volunteers who took part in this program, including my wife Donna, a nurse, who read the supermarket guide with healthy tips included. When the college asked that I reduce some of my expenses, I went to the Women’s Prison at Framingham MCI, and we were able to involve the women there in recording in English and Spanish for the Radio Reading Service.

There is nothing wrong in retelling stores of accomplishments when you do so with humility and give recognition to others who have contributed to those successes. I realize that now, too late to share with my parents, but not too late to share with the rest of my family.

In 2010, I joined Community Autism Resources. They have told their stories, but could use a louder voice to proclaim just how good they are. CAR was established in the early nineties by parents of children on the Autism Spectrum. The agency has provided field trips, sensory friendly movie experiences, a nationally recognized ASD Symposium, co-hosted by Dr. Barry Prizant. CAR and Dr. Prizant have also provided an annual retreat for 20 years for parents of individuals on the Autism Spectrum, because, remember, the staff knows what you are going through. The mission statement of Community Autism Resources is, “A place to start….A presence on your journey.

It is important to let your light shine. How can we all help let the light shine? On Saturday, September 19th, at Francis Farm in Rehoboth, MA, CAR is holding its annual Hearts and Hands Walk for Autism. This year we have also added a 5K run. It is a family day of fun and activities designed to raise money to further our programs, services, and activities. All of the money raised remains in our community.

For more information on this day, please go to our website: www.community-autism-resources.com. Thank you.

My Journey to Developmental-Behavioral Pediatrics

Marisa Toomey, M.D.

If there is one thing that has been a constant in my life, it is the fact that my father does not cry. It is not that he has ever been one to grunt monosyllabic answers or greet my dates with a shotgun. He bakes, he likes independent films, and he always reminds me “your mother is the one in charge.” Still, he has never openly shed tears. Thus, when I saw him cry in public a few years ago, it sent me into a bit of a tailspin.

My parents and I were at a dance for my younger sister Devon and other adults with developmental disabilities. At the time Devon, who has Autism, was twenty-five. Unlike most of the other individuals there, Devon does not live in a group home. She still resides at my parents’ house.

She was diagnosed in the late 1980s, when the only pop culture reference was “Rainman” and when no one had a puzzle-piece, ribbon-shaped bumper sticker indicating their awareness. I cried all of the time back then. No one understood her, and everywhere we went, other children taunted “freak” and “retard” at her. My father always reminded me that all that mattered was that she was my sister and that we loved her just as she was.

He cried now, over twenty years later, because the hope he felt back then was gone. He saw a future for Devon that none of us wanted. An inevitable group home once my parents become too old to take care of her. A social circle of individuals who cannot always respond to my (highly verbal and incredibly outgoing) sister’s pleas for friendship. A lifetime of wishing she could be a part of something more.

For several years, I had begun to feel the same way. I had applied to medical school with the sole intent of becoming a developmental-behavioral pediatrician. I had always wanted to be my sister’s doctor, and I had always believed that my personal experience with Devon gave me an insight that would make me a more compassionate physician.

As the years passed, and as my sister left the organized world of special education and drifted into the nebulous territory of adult services, I began to wonder if it would all be too difficult. It was clear that Devon was unhappy leaving the friends she had made at her school and being forced into an adult services day program, where many of the people are older and non-verbal.

I began to think that I would be the worst kind of developmental-behavioral pediatrician if I had no hope for the future of the children of whom I took care. I convinced myself I should do anything but developmental-behavioral pediatrics and began to ponder what other field in pediatrics would better serve me.

These thoughts turned into a sensation of shame as I sat at the dance and watched my father hurriedly attempt to mask his tears with a mumbled “there’s something in my eye” as he rushed off to the men’s room. What had become of my dreams? I had let frustration and fear turn my goals into regrets. When did I give up on my sister…and myself?

As I sat at the dance that night, I saw my future as a clinician who was happy at work but never truly inspired. I saw my sister’s experience becoming a secret I would keep. I saw myself forever abandoning any attempt to advocate for changes for the better for individuals with developmental disabilities.

And then I looked over at my sister on the dance floor. She was with my mother, and it was very clear that she enjoyed the music as she swayed in time to it. I realized that I was the one who had decided the situation was completely hopeless. Devon still keeps dancing.

My passion never died – I just became scared for the future. It is not easy, and I am not going to pretend that this essay should have a neatly packaged ending. My father did not come back bright-eyed, and we did not all dance joyously together as a happy, hopeful family. The situation is very difficult, but that does not mean I should relinquish my goals of advocating for individuals like Devon so that the future can improve.

I cannot cure my father of his tears, but I can try to do something that helps individuals like Devon.

04-23-2015

Reprinted from AAP section on Developmental and Behavioral Pediatrics, Development and Behavioral News. www.dbpeds.org. SODBP Spring 2013 Newsletter.

Dr. Marisa Toomey will complete her Fellowship in Developmental and Behavioral Pediatrics at the Children’s Hospital of Philadelphia in June 2015.

Preparation is the Key

Preparation is the Key
Patricia Leonard-Toomey
Midterm elections are over. We are all hopeful that the robocalls have ended. The holidays are headed towards us at the speed of light. Before that happens, it may be a good time to reassess how your child is doing in school and if there should be any changes to the IEP.
Have you received a Progress Report or Report Card yet? Is progress actually being made? If not, should you be sitting down with your child’s TEAM to determine what needs to be put into place for your child to successfully complete all of the goals and objectives on the current IEP by the time the next IEP is scheduled? Have you received all of the assessments you have been promised? Do you need any evaluations to be scheduled right after the New Year to make sure a transition for next fall will go as smoothly as possible?
Will you be requesting a summer program and need documentation stating clearly and unequivocally that your child will regress academically or socially if he or she does not receive extended year services? Now is the time to get all of that in place. If you wait until late Spring it could actually be too late to complete all of the tasks you may need to get done. Evaluations can take some time. If you do not agree with the school system’s evaluations and need to request Independent Evaluations, it can take even more time. School systems typically get bogged down in April, May, and June with evaluations and end of the year IEP’s. You want to make your life as easy as possible, so starting early is the key.
If your child is graduating from school or Turning 22 and leaving for an Adult Service Program of some kind, have you completed all of your Transition Plans? Have you visited Programs, do you know who the receiving agency will be? Do you know what type of supports your child will have in place as they leave the “safety” of the school system [due process is available with an IEP] to the more nebulous world of Adult Services? Have you considered Guardianship or Power of Attorney?
Will your son or daughter go to college? Have you completed your visits? Will they need any special accommodations? Have you been in touch with the Disability Office of the college? Will they live away from home? Do you need to have any type of Power of Attorney to be certain the college will be able to contact you re: your adult child if an issue occurs?
We all know that you can never be prepared for everything, but it is important to be as prepared as possible. It will cut down on the stress many of us go through at this time of year, and then as spring approaches knowing we have so much to accomplish before the end of the school year.
Hope you have a Happy Thanksgiving. We are using the Tall Pilgrims now! [please check out my previous blog from January]

Pausing to Listen

 

Pausing to Listen

My adult daughter with Autism loves to shop for Holiday themed items.  In January, she mentioned that she wanted to go to the store to buy some Pilgrims.  Fall is definitely our favorite time of year.  That being said, I reminded her that we could not buy Pilgrims in January.  I talked about going in the fall to buy Pilgrims, Pumpkins and other assorted Harvest items.  Of course our discussion was taking place as I attempted to complete the myriad of morning tasks I have to finish before the van comes to pick her up for her adult program.

As I walked up and down the hall with laundry baskets, lunch items, shoes to put on etc., Devon began to discuss over and over again her desire to buy Pilgrims at the store that day.  I once again let her know we could not do that at this time of year.  Devon began to cry.  I put everything down and walked over to her to let her know we could buy Valentine’s Day items or something else, but she just wanted to talk about the Pilgrims.  Once I stopped and sat next to her, she told me she wanted to buy “the short Pilgrims.”  Finally I understood.  I said, “ you want to buy Leprechauns, and she said, “Yes, the short Pilgrims who wear green.”  We are Irish, and we have had Leprechauns in the house for every St. Patrick’s Day, but for some reason the name did not immediately come to her.  I am very thankful that she has the ability to expand on her descriptions, because really, when you think about it, Leprechauns do look like short Pilgrims.

Of course we went to the store that day to buy Leprechauns [always to be known as “short Pilgrims” in my house from now on]  and everyone was happy.   It is important to mention, that it is possible if I had more to do that morning, I may not have sat down on the couch, I may have continued to remind Devon that it was January, and the Pilgrims were put away until next Fall.  She may have gotten more upset, my decision to finish my morning tasks instead of investigating what she wanted could have impacted her entire day.  Something about the way she looked at me stopped me in my tracks.  I knew there was something else she had to say, and I am happy that I finally “paused” to find out what it was.  I will try to remind myself of this every morning as I walk up and down that hall while she talks to me.

Devon would want me to wish you all a Happy Thanksgiving…oops, St. Patrick’s Day!!!