Please give your Special Needs loved one an extra hug for me tonight

[chocovrdmicears]

We have a little boy who is almost 5 who was diagnosed with autism 3 years ago..The story we heard on our local new hit me very hard tonight.
A little angel, an 8 year old child with autism, was diagnosed with cancer.He is a beautiful little boy who has never spoken a word... He had an 80-90% chance of survival with medication and treatment. His, for lack of a better word, 'mother' stopped taking him to the docters. His 9th birthday is next month...and because he never received the necessary treatment he now has a 10% chance of seeing his next birthday.
As a mom of a special needs child, I understand how difficult the days can be...but I am devastated by the neglect of this little boys life. I am so thankful that I was chosen to be the mom to my special little boy. This story breaks my heart beyond words. I have been crying for the past hour.... Please...hug anyone in your life with special needs that you were blessed to have in your life.

 

[SueM in MN]

very sad
My father died of non-Hodgkin's Lymphoma. He was treated and went into remission, then back out of remission and elected not to continue treatment because the first course of treatment was so grueling.
I can't imagine an adult putting a child thru that treatment and then not completing the treatment that would keep them in remission.

Here's a link to the story if someone wants to read more.

 

[minkydog]

I have thought about what we might do if Christian were to develop cancer or something. He is very autistic and mentally handicapped. He functions on the level of an 18month old baby. Now 13yo, he is *almost* potty-trained. He cannot talk, feed, or dress himself although he does have a pleasant life otherwise. Christian needs constant supervision and assistance for absolutely everything.

As cruel as it seems, I sympathize with the mother. I don't know her or her child, but I know that if we were in that situation we might very well opt for no treatment. My son could never comply with treatment or understand what was happening to him. As much as I would want to save him, I don't think I could justify putting him through the tortures of chemo. I don't know, maybe I'd feel differently if it were happening to us, but I doubt it. Perhaps this mother made her decision out of love for her child, not neglect.

 

[alizesmom]

I have thought about what we might do if Christian were to develop cancer or something. He is very autistic and mentally handicapped. He functions on the level of an 18month old baby. Now 13yo, he is *almost* potty-trained. He cannot talk, feed, or dress himself although he does have a pleasant life otherwise. Christian needs constant supervision and assistance for absolutely everything.

As cruel as it seems, I sympathize with the mother. I don't know her or her child, but I know that if we were in that situation we might very well opt for no treatment. My son could never comply with treatment or understand what was happening to him. As much as I would want to save him, I don't think I could justify putting him through the tortures of chemo. I don't know, maybe I'd feel differently if it were happening to us, but I doubt it. Perhaps this mother made her decision out of love for her child, not neglect.

Thank you for giving us a different perspective of the situation. Karen

 

[chocovrdmicears]

I have thought about what we might do if Christian were to develop cancer or something. He is very autistic and mentally handicapped. He functions on the level of an 18month old baby. Now 13yo, he is *almost* potty-trained. He cannot talk, feed, or dress himself although he does have a pleasant life otherwise. Christian needs constant supervision and assistance for absolutely everything.

As cruel as it seems, I sympathize with the mother. I don't know her or her child, but I know that if we were in that situation we might very well opt for no treatment. My son could never comply with treatment or understand what was happening to him. As much as I would want to save him, I don't think I could justify putting him through the tortures of chemo. I don't know, maybe I'd feel differently if it were happening to us, but I doubt it. Perhaps this mother made her decision out of love for her child, not neglect.

Thank you for taking the time to share your thoughts and feelings. I 100% respect your opinion.
Yes, I am a Mom to a special needs little boy, but we are blessed in that he is a very high functioning child with autism. We have had many tough days but certainly not to the extent of the challenges you clearly face each day.

 

[SueM in MN]

I have thought about what we might do if Christian were to develop cancer or something. He is very autistic and mentally handicapped. He functions on the level of an 18month old baby. Now 13yo, he is *almost* potty-trained. He cannot talk, feed, or dress himself although he does have a pleasant life otherwise. Christian needs constant supervision and assistance for absolutely everything.

As cruel as it seems, I sympathize with the mother. I don't know her or her child, but I know that if we were in that situation we might very well opt for no treatment. My son could never comply with treatment or understand what was happening to him. As much as I would want to save him, I don't think I could justify putting him through the tortures of chemo. I don't know, maybe I'd feel differently if it were happening to us, but I doubt it. Perhaps this mother made her decision out of love for her child, not neglect.

I thought of that also.
Treating or not treating would have to be a personal and very difficult decision.

I don't know if the article is correct, but it said the child had already completed a 5 phase regimen of treatment, so he had already received the difficult part. That's the reason I don't understand why she would not have given the medication.
There are a lot of un-answered questions about why the mother may not have given the maintenance medication. The article doesn't talk about that - Did she understand how to give the medication, how important it was?
Did she know how to get it and how was it being paid for?
Did she think the medication was optional?
Did the child have problems with it and she stopped it for that reason?
Was she just overwhelmed?

I think it does bring up more questions than answers.

 

[mechurchlady]

I have set on this board a long while now and seen so many little miracles and seen kids so many stories about kids who give love and sunshine to their family. I seen a little girl go from a vegetable to typical 4 year old except for the walker and signing. I have hope despite all that is said.

I care for a mean heartless woman who cycles to a loving sweet mother. She was abused as a kid, slapped for being stubborn but she might be aspie or she might be ADD, who knows. I also know it is very hard to daily care for someone who emotionally drains you and limits your life. The back breaking work of caring for someone who is disabled can drain a person. What is it like to load up the car and go to WDW, SeaWorld, the county fair, or the movies? What is it like to go to those places without meltdowns, packing equipment and medine, and having to have your whole trip rotate around one person?

I could not do it but then like Sue said maybe she did not understand the ramifications of her actions or know her options. Judge not lest ye be judged. I cannot say what I would do but I can say what I hope will happen if in that situation.

big hugs
laurie

 

[Eeyores Butterfly]

I remember being outraged when I read the article, however, minkydog's post reminded me of a mother who talked to a class I was in.

Her little boy had lots of different physical issues. He got sick very easily and at one point was put on a feeding tube. He also had cognitive impairments and would try to pull the feeding tube out because it was uncomfortable. When they were told he would need to go on a ventilator, probably for the remainder of his life, they opted to stop treatment. The mother knew that the little boy would not be able to handle the ventilator, would always try to pull it out, and perhaps the more compassionate thing to do would be to let him go.

I have a lot of respect for that mother for being able to tell her story. I cannot imagine being in that position and having to weigh my own selfish needs of wanting the child with me with the needs of my suffering child. I pray to God I will never find myself in that situation, and feel for any family that does.

 

[Schmeck]

I know some of the people involved in this situation the OP talks about - the media is not getting the info straight, and the entire situation is not being told. That's all I can say.