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The Special Mother
Dedicated to Sean
Speech by Lisa Young
Poem by Erma Bombeck
‘Most women are mothers by accident, a few by choice,
a few by social pressures, and a couple by habit. This
year nearly 100,000 women will become mothers of
handicapped children.’
2
‘Finallyhe passes a name to an angel and smiles. Give this one a
handicappedchild. The Angel is curious, Why this one, God? She’s so
happy. Exactly smiles God. Could I give a handicappedchild to a
mother who does not know laughter?That would be cruel.’
3
Sean was a
premie
- born at 28
weeks
– Weight 4
lbs. 5 oz.
4
Sean - Eight months
5
‘But, has she patience? Asks the Angel. I
don’t want her to have too much patience
or she will drown in a sea of self-pity and
despair. Once the shock and resentment
wears off she’ll handle it.’
6
Types of Cerebral Palsy
7
‘I watched her today. She has that
feeling of self and independence that is
so rare and so necessary in a mother.
You see, the child I’m going to give her
has his own world. She has to make it
live in her world and that’s not easy.’
8
’She does not know it yet, but she is
to be envied. She will never consider
a step ordinary.’
9
‘I will permit her to see clearly
the things I see…ignorance,
cruelty, prejudice… and allow
her to rise above them. She
will never be alone.’
10
Horseback Riding
11
Challenger
Baseball
12
Special Olympics,
Riding Bike, Skiing
& Karate
13
Master
Fawcett
14
Sled Hockey
The Mighty
Penguins
15
State College
High School Graduation
ITT Tech Graduation
16
Challenges & Triumphs
17
ErmaBombeck’spoemendswith:
‘Shewillneverbealone.Iwillbebyherside
everyminuteofeverydayofherlife,because
sheisdoingmyworkassurelyassheishere
bymyside.’Andwhataboutherpatronsaint?
Askstheangel,hispenpoisedinmidair.God
smiles,Amirror willsuffice.
18
Learn more about Cerebral Palsy & Activities:
About Cerebral Palsy - http://www.cdc.gov/ncbddd/cp/facts.html
United Cerebral Palsy - http://ucp.org/
Riding for the Handicapped in Western Pennsylvania - http://www.rhwpa.org/
Hidden Valley Disabled Ski Program -
http://www.hiddenvalleyski.com/disabled_program.html
Challenger Baseball - http://www.bcchallenger.org/
Special Olympics - http://specialolympics.org/
Info about Martial Arts: http://fightingarts.com/reading/article.php?id=6
Mighty Penguins Sled Hockey: http://penguinssledhockey.org/
19
The Special Mother by Erma Bombeck
20

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The Special Mother - Sean's Speech

Editor's Notes

  1. Slide 1 "Most women are mothers by accident, a few by choice, a few by social pressures, and a couple by habit. This year nearly 100,000 women will become mothers of handicapped children." This is an excerpt from a poem written by Erma Bombeck that my mother gave me in 1985, 3 years after I learned I was one of the chosen mothers. How many of you are parents? When you become a parent, everything is new and exciting and you make plans for your child. Sometimes, the plans do not work out the way you expect, & the journey you are on becomes a very different journey. Fellow Toastmasters and guest, today I am going to share my story of raising my differently-abled son.
  2. Slide 2 In Erma Bombeck's Poem, she reflects on how God choose who will be blessed with a handicapped child. "Finally he passes a name to the angel and smiles. Give her a handicapped child. The angel is curious, why this one God? She is so happy. Exactly smiles God, could I give a handicapped child to a mother who does not know laughter? That would be cruel. (Fly in picture) I was just a teenager of nearly 19 years old when my first son Sean was born.
  3. Slide 3 Sean was born premature at 28 weeks and weighed 4 lbs. 5 oz. He went straight from the delivery room to an incubator. He was so tiny, I did not even get to hold him and he had to stay in the hospital. I went and visited two times a day wondering each day when I would get to hold him. The doctors and nurses said the keys to taking him home were 1. Got of the respirator and could breath on his own, 2. He did not need the Bili lights he had for jaundice, and 3. He weighed at least 5 pounds. Each day I went he improved. He eventually got off the respirator and was breathing on his own, no longer needed the Bili lights, and he made it to 5 lbs. After 28 days, I was able to bring him home!  
  4. Slide 4 Flash forward 8 months, I went to the doctor and was told Sean was not developing as he should. He had stiffness in his legs. The doctor told me to take him to the Cerebral Palsy clinic for an evaluation. He did not tell me anything about Cerebral Palsy - being so young, I listened and took him to the clinic in Oakland all by myself. I will never forget that day, it would change both of our lives. As I mentioned, I knew nothing about CP, the doctor looked at me and told me your son has a mild case of CP and left the room. I tried real hard to keep it together, but I couldn't, I left the office in tears. I remember going to my mother’s office in Oakland and sobbing while telling her the news, and then I went home put Sean to bed, turned out all the lights cried myself to sleep. My phone was ringing off the hook, but I did not answer it, I needed time to process everything. It was the hardest day of my life.
  5. Slide 5 Erma Bombeck's poem continues 'But has she patience asks the angel. I don't want her to have too much patience or she will drown in a sea of pity and despair. Once the shock wears off, she'll handle it.' The next day, I woke up & knew I had to face reality & learn all I could about Cerebral Palsy (CP). Cerebral means of the brain, and Palsy means lack of muscle control. CP is a disorder of muscle movement and coordination. It affects people in different ways & can be mild to severe.
  6. Slide 6 There are different types of CP, I am familiar with the type my son has which is Spastic Diplegia - tightness or stiffness of the lower body. His legs were very stiff and would cross when he tried to stand. We had a long road ahead with physical therapy and surgery, but I was ready to tackle this journey with my son. I had a lot of responsibility at a very young age, but fortunately, I got it together and did everything I could to help him while still trying to grow up myself, go to a tech school, and work. It was not easy!
  7. Slide 7 The poem goes on, 'I watched her today. She has that feeling of self and independence that is so rare and necessary in a mother. You see the child I'm going to give her has his own world. She has to make it live in her world and that's not easy.' His father was briefly in the picture, but was abusive and I had to get out of the relationship for the sake of me and my son. I knew I had to get myself together and grow up fast! Luckily my family and friends were very supportive & helped me get on my feet. I met my husband Jerry when Sean was 4 & remember having a moment when I was feeling sad that Sean would not be able to do things other children did, such as ride bike, play baseball, run - things we take for granted. Jerry assured me he would be able to do things, he would just need to do them differently.
  8. Slide 8 The poem continues…'She does not know it yet, but she is to be envied. She will never consider a step ordinary.' Things like walking, getting dressed, and even tying shoes, are things many of us take for granted as milestones for our children. These things are challenging for someone with CP & some people with CP may never be able to do these things. Sean's diagnosis was mild and eventually, he did them, it just took a little longer. I remember Jerry always challenging him to walk more, get dressed, and even to tie his shoes. We told him once he could tie his shoes, and walk down the steps we would take him to Kennywood. Finally, he did it-you could see his sense of accomplishment. We took him to Kennywood! After all, he worked hard for that trip.
  9. Slide 9 Another line of the poem states…'I will permit her to see clearly the things I see ignorance, cruelty, prejudice and allow her to rise above them. She will never be alone.' I took Sean to therapy on a weekly basis to learn how to stretch his muscles and use walkers, and crutches. We went everywhere together. (Fly in picture) One day, we were walking out of a store and a little girl and her mother were walking out. The little girl was curious when she saw Sean with crutches and said Mommy, why does that boy have crutches?' Her Mom pulled her had and said C'mon honey he's crippled and walked away. That day, we experienced ignorance, cruelty, and prejudice. Going forward, I was like a pit bull protecting my son and trying to educate people about CP. People are cruel - he is a person with feelings. He is a person too! Why do people talk like he has no feelings?! He could hear and understand what they were saying. People can be cruel!
  10. Slide 10 We had may positive experiences too! When Sean was 4 or 5, we learned that horseback riding was good and would help stretch his muscles and relax his legs. My Dad's friend Howard had a farm in Baldwin and he got Sean a pony and Howard kept it at his barn. Now what kid does not want a pony! Sean named his pony Hutzy! I have no idea where that name came from, but that was what he named it. We took him riding on the weekends, and you could see how it relaxed his legs and helped.    
  11. Slide 11 I made it my mission to get Sean involved in as many positive experiences I could. Sean played challenger baseball and got to experience being on a team, running bases, and even going to Three Rivers Stadium to meet the Pirates and experience what it was like to be on the ball field!
  12. Slide 12 Sean also got do participate in special Olympics which are adapted for differently abled individuals. He had the opportunity to go skiing at Hidden valley and even ride a bike! I saw a Karate school, I rode past every day, and decided to call the school to see if Sean could take Karate. The owner said let me think about it and I will get back to you. He called the next day and wanted to meet Sean. We went, and he agreed to teach him as long as I did not stay during class.
  13. Slide 13 I remember one day, after class, I came to pick Sean up and Master Fawcett wanted to show me something. He had the students from a line on both sides of the room, and then Sean was in the middle. He said ok show your Mom what you can do. Sean lifted his crutches in the air and held them straight in front of him and he walked down the center with his classmates clapping and cheering him on. I will never forget that moment - I cried. It touched me that the instructor that owned the school put so much effort into making Sean feel part of the class and really including him. I will never forget Master Fawcett, and I hope Sean will not either!
  14. Slide 14 I believe that people are put in our paths for a reason. I worked at a company called KTG where I met Linda. Linda introduced me to someone she did business with who was a Shriner. The Shriners help kids and get them free care. I thought we could see if there was anything else we could do to help manage Sean's CP with a drug called Botox which helps to relax your muscles. Sean tried it, but did not like the way it made him feel. When we were there, we met a nurse who ran a sled hockey program for differently-abled people. We got Sean involved with sled hockey which is a sport where they sit in a sled and use hockey sticks that are half the size of normal hockey sticks to help them get around on the ice. When the puck comes to them, they have to flip the stick and use the end to shoot the puck into the net. This too was another great experience for both of us, we got to travel to different places to play sled hockey. We went to Atlantic City for a game where I got to experience my first trip to the Casino, and won $350.00 on the slots after spending $1.75. I quit after I won, except for playing nickel slots with a two dollar roll of nickels and winning another $20.00. That was enough for me, I needed the money to pay for my car which broke down right before the trip. We also got to play in Ontario, Canada and see Niagara Falls along the way. Everything happens for a reason!
  15. Slide 15 We had some rough times when Sean was a teenager, and he moved to State College and stayed with my Mom. He went to State College High and even got to go to the prom with my friend's daughter Ashlee. He graduated from State College High and did not want to attend graduation. I made him go, and watched him walk to get his diploma - another day that filled me with pride and brought tears to my eyes. He tried going to Edinboro, but that did not work out too well. He went to the culinary institute and graduated and also went to ITT Tech for film. My Aunt Mary helped to find him an apartment so he could live on his own, Today Sean lives on his own and enjoys writing and driving his mother crazy! .
  16. Slide 16 I may not be the most perfect mother, I did my best as one of God's chosen mothers. Although there were many challenges along the way, there were many triumphs. Sean has taught me that with persistence a differently abled person can overcome obstacles, and do some of the same things you and I do, he just does them differently and at a different pace. I see the many frustrations Sean has of having to depend on others, but he is a very strong willed independent young man. I hope our story helps you to think about people with different abilities and know they want to be treated with respect. Put aside ignorance, cruelty, and prejudice, and try to gain knowledge, have compassion, and understanding.
  17. Slide 17 Erma Bombeck's poem ends with 'She will never be alone, I will be by her side every minute of every day because she is doing my work as surely as she is here by my side. And what about her patron saint asks the Angel, his pen poised in mid- air, God Smiles. A mirror will suffice. Fellow Toastmasters…