12-10-2000, 11:57 AM #1Dave DukeFirehouse.com Guest
Firefighters children with disabilities.
I'm a firefighter with a child who has severe learning difficulties. I know there are many more firefighter parents, in a similar situation, out there. What support do you get from colleagues, department, county, state etc. Comments here or to:- firstname.lastname@example.org
12-13-2000, 11:22 AM #2firefighteranneFirehouse.com Guest
I have a son who is mildly mentally handicapped. He was diagnosed at age 3 and he is now 13. I have some good friends at work and on my volunteer fire department who are very kind to my son (that's why they're good friends). We were fortunate to have him in a preschool special education class for 3 years--the early intervention made a lot of difference. We feel we're blessed with a very good and strong school in the field of special education. We went through the normal grieving process when we first found out about his handicap--our "normal" child was dead, however, we have come to realize that he is truly a gift from God. We has made us a very close and compassionate family, and has opened up a whole world to us that we never knew existed. One of the first things I learned was not to worry too much about the future--take one day at a time. You may e-mail me at email@example.com
12-13-2000, 12:20 PM #3FireRebelFirehouse.com Guest
God Bless you both, I am a father of a beautiful son who is healthy, ALL children are gifts from God and we need to treasure them everyday we are blessed with them...take care and Stay Safe..
12-14-2000, 05:08 AM #4Dave DukeFirehouse.com Guest
Thank you for your kind thoughts. It really is reassuring to know that there are decent people like yourself out there.
Take care and stay safe.
12-14-2000, 05:13 AM #5Dave DukeFirehouse.com Guest
I dedicate this to my wife and all the mothers of our 'Special Children'.
The Special Mother
by Erma Bombeck
Most women become mothers by accident, some by choice,
A few by social pressure and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how these mothers are chosen?
Somehow I visualize God hovering over Earth
Selecting his instruments for propagation with great care and deliberation.
As he observes, he instructs his angels to take notes in a giant ledger.
"Armstrong, Beth, son. Patron Saint, Matthew."
"Forrest, Marjorie, daughter. Patron Saint, Celia."
"Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to
Finally he passes a name to an angel and smiles. "Give her a handicapped
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a handicapped child a mother who knows
no laughter? That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.
Once the shock and resentment wear off she'll handle it."
"I watched her today. She has that sense of self and independence so rare and so necessary in a mother.
You see, the child I'm going to give her has a world of it's own.
She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't seperate herself from the child occassionally, she will never survive.
Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't know it yet, but she is to be envied.
She will never take for granted a spoken word.
She will never consider a step ordinary.
When her child says momma for the first time, she will be witness to a
miracle and know it.
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 will be at her side every minute of every day of her life
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 the
air. God smiles.
"A mirror will suffice".
12-21-2000, 04:52 PM #6snowballFirehouse.com Guest
Dave I saw your post but I wasnt' sure how to reply. My wife and I are parents of a special little girl. Samantha is three now. She was born with CMV or the common cold virus to you and me. When contracted by a pregnant woman
it spreads to the fetus and causes severe damage. Samantha spent the first month of her life in an NICU with the Doctors telling us every night before we left to "say goodbye".
Once she came home there was another three months of no sleep because of a Sat monitor,
heart monitor, and O2. After she was stable enough to travel we started to take her to the many doctor visits and hospital visits
to maintain her health. Luckily for us we had dual coverage insurance so it didn't wipe us out. Anyway, about Samantha's condition. She had calcification to parts of her brain a result of that was Cerebral Palsy, mental retardation,nerve damage and deafness in one ear. It's not as bad as the doctors projected that the outcome would be. Blind, deaf, severe retardation, paralysis just to name a few. She is now hardly ever sick but we take every precaution to keep her healthy. She is deaf in her left ear, she cant walk or crawl or talk, but she lets' us know what and when she wants anything. We have recieved a lot of help from the county. She is enrolled in an early start program and goes to school. We get four cases of a formula with fiber sent to our house every month. When she turned three we got financial help with diapers fifty dollars a month. She recently recieved her own wheelchair, my insurance paid 70% and we werent sure how we were going to come up with the rest. I asked my union president who I was stationed with at the time, if there was anything he could do. Needless to say, the balance was paid. Samantha is a healthy, happy, and in our eyes, a normal child who will not go through life with a want for anything. Here is something that I need to ask you. How are you doing ? The reason I ask this is because through this whole ordeal, everyone was asking me how my wife and baby were. I never took the time to tell them how I was coping with this. I was totally consumed with their well being and I pretty much let myself slide into a protective shell,hiding my feelings and takin care of buisness as usual. This was the worst thing I could have done. I'm ok now thanks to my wife. Talk, talk, talk. I just wish I didnt' wait three years to do it. If I can be of ANY
help to you or others, dont' hesitate to contact me. Bless you brother, and your family too. Gary Schafer.
12-21-2000, 08:08 PM #7Brian JohnsonFirehouse.com Guest
I have a 4 year old boy who was born very early. His medical history would take a lot of time so I won't get into the details. After years of not knowing we have found a wonderful doctor here in Japan (A Navy doc), who has diagnosed him with developmental dyspraxia. While this poses many problems the most severe is the fact he can not speak very well.
We have wonderful support here with Dept. of Defense Schools. Kyle is in pre-school and has one-on-one speech therapy 4 times a week. He uses sign language and has a hand carried computer speech device that he uses very effectively. These things were not just offered, we fought like cats and dogs with the school.
Advice to anyone with a kid with disabilities, search the internet for the Individuals with Disabilities Education Act (IDEA) and get a copy. Memorize and be prepared to quote from it. The schools have very limited resources and will try to get by with giving you as little as possible until you let them know that you know the law and are prepared to fight for your kid.
All of the experts tell us he is suppose to be a wild and disruptive kid because of his inability to communicate. Just the opposite has happened. We realized early that "DE NILE" is not just a river in Egypt. Kyle uses some words, lots of signs and his communication device. He wakes up every morning smiling and signing happy. Sometimes I think I see him smiling when he is sleeping.
The following was printed in Dear Abbey and just about says it all.
WELCOME TO HOLLAND
by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability -- to try to help people who have not shared the unique experience to understand it, to imagine how it would feel. It's like this ...
When you're going to have a baby, it's like planning a fabulous vacation trip -- to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. Michelangelo's "David." The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes and says, "Welcome to Holland."
"Holland?!" you say. "What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guidebooks. You must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
01-06-2001, 09:32 AM #8Dave DukeFirehouse.com Guest
Many thanks to all those who have replied both to this site and directly by email. From your responses (from firefighters across the world) it appears we all have similar experiences, whatever the degree of disability or illness.
Please never feel that you are alone, there are good people out there who will move mountains to help you - if there isn't a support group near you, start one. The initial effort required will be well worth it.
Ask your union officials for advice, many will be prepared to attend meetings with administrators with you and speak on your behalf.
If you feel you can support a colleague who has a child with disability or illness, offer them your help. Teach your children about disabilities - let's face it, statistically, some of them will one day have a disabled child - perhaps your grandchild!!
Those parents with disabled children may appear to be coping but in reality...................! Could you and your department organise a fund raising event to help a colleague, or another member of your community, with a piece of equipment (wheelchair, stairlift etc.) which will make their life that little bit easier.
Please help in any way you can, however small. Believe me when I say that it will be greatly appreciated. Help can be emotional as well as financial!!!!!
I thank you for your future help.
Take care and stay safe.
01-07-2001, 05:41 PM #9firefighteranneFirehouse.com Guest
Courage doesn't always roar.
Sometimes, courage is the quiet voice at the end of the day saying,
"I will try again tomorrow."
by Mary Anne Radmacher-Hershey
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