If you knew your child wouldn't live to see adulthood....
By katsmeow1213
@katsmeow1213 (28716)
United States
August 16, 2010 8:15am CST
I have a friend who's son will be passing away very soon. He was born with Duchenne Muscular Dystrophy and his health has been going downhill quickly as of late. He's 14 years old now. He's been in a wheelchair ever since I met my friend, and has recently been put on a feeding tube. I feel terribly for her, I can't imagine how hard this is.. he is her only child.
I've been thinking about her a lot lately, knowing how hard of a time she's having.. and something popped into my head, but I don't want to be insensative and ask her this question.
I know that she's had her son in mainstream school all along. It's summer vacation now, but he finished the school year last year... but I don't know her plans for this coming school year.
My question is, if your child were this ill and you knew the life expectancy at best was late teens to early 20's, would you still send them to school or would you want to keep them home and spend as much time with them as you possibly could?
I suppose it's hard to make this decision if you're not in the situation. I know every parent needs a break from their child, especially when the child requires a lot of monitoring and attention.. so I suppose she does this not only for her sanity but also to give him a taste of a normal childhood.
I personally would probably mainstream school them while their health was well enough, but as soon as they started having serious health problems I'd keep them home to spend as much time with them as I could.
5 people like this
16 responses
@GardenGerty (161080)
• United States
16 Aug 10
I would send them to school, until or unless doing so compromised their health. I have been bus driver in the past for kids with this special condition. If you keep them home all the time, you are just basically reminding them every day that "you are going to die" and that is not how a child needs to live. The other side of that is you can love them so much you turn them into spoiled brats that are a pain to be around. I would always let my child be as normal as possible.
@GardenGerty (161080)
• United States
16 Aug 10
I am sure he would be much worse if he were never allowed to go to school.
@GardenGerty (161080)
• United States
13 Oct 10
Thank you for the BR. Answering questions like this make me feel like I might know something useful or have some helpful experience. As a note, we had a young man in our community die last week. He was in college, but I drove him on the bus when he was 4. He had CP if I remember correctly. He had a wonderful life, was team manager for one of the sports teams and on homeocming court at school. I am glad he did all of those things.
@katsmeow1213 (28716)
• United States
16 Aug 10
He is definitely a bit of a spoiled brat, but being an only child, who's to say it would be any different if he were healthy.
1 person likes this
@katsmeow1213 (28716)
• United States
16 Aug 10
I know she hasn't been handling it well lately and he's just getting worse and worse.. it's been a long, downhill battle since I met her.
1 person likes this
@ravinskye (8237)
• United States
16 Aug 10
I couldn't imagine what she must be going through. My first instinct would be to keep my child home with me so I could get as much time with them as possible. But then I think I probably would send my child to school. They deserve to have as normal of a life as possible and to be able to experience as much as they can. Plus I think I would try to live normally in the hopes that maybe my child will live longer than expected or even be cured before the disease would take my child's life.
@katsmeow1213 (28716)
• United States
16 Aug 10
That is probably most parent's hopes.. though there is still no cure for DMD and at this point I don't think it would help. His muscles are so bad already that his feet sit at odd angles... if he lived he'd never be able to walk... but a life in a wheelchair is certainly better than no life at all.
@sid556 (30959)
• United States
16 Aug 10
Hi there Kats,
This has got to be so emotionally draining on a parent. My girls did have a good friend back in elementary school that had brain cancer. She was such a strong little girl and a true inspiration to all those that knew her. I got close to the family. They did not know how much time they would have with her but I have to say that they not only cherished their time with her but with each other as well. This girl stayed in school until very close to the end. You could tell she was in pain and tired easily but she just pushed herself. I'll never forget her coming into the store that I work at shortly before she passed. she had lost so much weight and looked so frail. She wandered up and down the candy aisle a bit and then just walked over and sat down indian style on the floor. Concerned, I walked over and asked her if she was ok. She looked up at me and with a big, bright smile she exclaimed that she was just fine and then went on to ask how I was doing and how my day was going. I don't know where her mother drew her strength but she too, always had a cheerful disposition. The only signs of stress were in her appearance...she appeared much older than she was. I know it was hard on this mother but she let the girl do whatever she felt up to doing. She was up at the school all the time to help out so that the teachers weren't too burdened with her care although I doubt any of them would have minded. I really don't know what I'd do in such a situation.
@katsmeow1213 (28716)
• United States
16 Aug 10
Wow, what an inspirational story. Thanks for sharing.. I'm sure the entire community was saddened at the loss of that little girl.
@cynthiann (18602)
• Jamaica
16 Aug 10
You hit the nail on the head. to give him a normal childhood as possible but equally important is to give him hope. Interaction will other young people will help him from becoming too depressed as well. I feel so sorry for your friend the thought of losing a child is terrible. I nearly lost my third son through peritonitis and this was one of the worse experiences in my life. He was 9 at the time.I cannot even bear to think about it even now.
@Angelgirl16 (2171)
• United States
17 Aug 10
Hi katsmeow,
The mother of this young man has been blessed for 14 years to have this special child in her care. The purpose of his birth is unknown to us, but he is here for a purpose and when his time is done, it is done.
Working with children with special needs children who has been placed in mainstream schools is one of the greatest privileges that I will probably ever have in my life. They are smart and fun to be around. Some of them are not as severe as others, but I love them all
As a mother, with a special need child, I would want my child to interact with mainstream society as much as possible. I would do all I could to make sure that my child would know that he or she is loved not matter what their condition is. Of course, there will be people who won't try to understand or like my decision or my child, but some people don't like even the normal children, so what's the difference if they don't like a special need child.
Just like any other child who gets too sick to attend school, this child should not be attending school if his conditions is deteriorating. But until then, the child should enjoy life as much as he possibly can. The mother should enjoy her son and look on him as a blessing and not a hardship.
@katsmeow1213 (28716)
• United States
17 Aug 10
She does not look at him as a hardship.. she loves him and he is her whole world.
@deebomb (15304)
• United States
16 Aug 10
This is a very difficult situation. I really feel for your friend. I would want my child to have as normal a life as possible so I would send my child for school. Sending the child to public school would also benefit the other children in the class. My granddaughter had a special needs child in her class when she was in 2ed grade and the whole class was willing to help him. I believe this experience has made her more compassionate.
@dawnald (85146)
• Shingle Springs, California
20 Aug 10
I'd want them to have other experiences besides home life, so yeah I'd send them to school as much as possible.
@wendyloo (184)
• France
16 Aug 10
I really do feel for your friend,what a situation for anyone to be in.
I would however send my child out into the world to have some life skills and enjoy the company of other children,it would be a long boring time for any child to grow up with just family around them,and not get out into life as it where to see what was happening..
Being in a situation of my son being handicapped and often falling or being ill,I know he certanly did benifit and strive from being treated as normal,going to school,having friends ect.
Also for my own streght and sanity the short breaks where needed.
I think maybe your friend has the right mindset,live for now and take later as it happens..
@JudgeIronFist (2472)
• Singapore
16 Aug 10
Sorry to hear that. I have the same view as you. Kids with health problems need their parents love. They will constantly need their parents by their side. Send my regards to your friend.
@shia88 (4571)
• Malaysia
17 Aug 10
Hi,
Feel sad for your friend and If I were at her position,
I will still send my kid to special need school and let him enjoy with
his life,be it,he can't live for long in this world.
As long as his body condition allowed him to do those activities,I
will let him join and have fun for the rest of his life before he
leave this world.
He has to see the society and mingle around with other people.
By putting him at home all the time, he won't be able to communicate well
with this world and it is pretty boring.
Always stay positively and try to seek for the best medication for our kid.
Unless if the doctor really confirmed that there is no chance for
recovery,then we may just accept the fact and wait for the TIME.
If there is always a small chance of recovery, I will bring my kid for the
best medication.
@06MLam (620)
•
16 Aug 10
I think if I were your friend, I will still put my son to mainstream school because I do not want him to feel that I treat him like an alient which is defferent from the other children and I have the hope that sending him to the school can help him to find his goal so as to have it achieved within his lifetime.
Though his life expectancy is considered to be very short, it does not matter as what is most important is how meaningful your life is rather than how long your life is. It will not give us any contribution if you do not live a meaningful life how ever long you have been living in the Earth. What make a difference here is the quality rather than quantity. Therefore, I will try to send hime to the mainstream school and give him support at certain time so that he will not feel that he is fighting against the disease on his own.
@maomao20716 (171)
• China
17 Aug 10
first i am sorry to hear that. if i know my child wouldn't live to see adulthood
maybe i hear the news ,i can afford it , it is a big sorrow for me ,as long as i recall the memories with my child , being a parent ,i really really accept it.
but after sorrow ,everything must continue ,i will pretend to be happy in front of him/her ,tell him/her take it easy ,the doctor say you will be all ok after some break... next his/her rest life ,i will take him/her to every place he/she wants to go,let him/her pass the rest happily...
this my idea about the topic
@khalique09 (32)
• Pakistan
16 Aug 10
This is seriously very bad. i don't have any child as i'm not married but i remember my 1 year elder brother condition he was suffering from Thallesemia condition is very bad your blood cell is not producing every next day you need blood. GOD that was really terrific we took him two time to hospital in week. he left when he was 4. :(
@lulu1220 (1006)
• United States
16 Aug 10
I think I would leave it up to my child. If they really want to go to school then I would let them. If they prefer to be at home, there is always home schooling. Or maybe my child would want to just learn a few things. Maybe they have some interests or hobbies they want to pursue. I cannot imagine what she is going through.
