In-Home Support Lacking for Parents of Sick Children


istockphoto.com/Elenathewise

It’s all over the news that a Massachusetts woman has been charged with attempted murder, child endangerment and assault and battery for withholding cancer treatment from her son who also suffered from autism. She admitted that she did not give him in-home chemotherapy prescriptions for five months because the side effects made her son so sick, she was afraid he couldn’t withstand them. His cancer, once in remission, returned and he died of lymphoma at the age 9 in 2009.

Certainly, this story is an unspeakable tragedy by any measure, but rather than address the woman’s guilt or innocence, I want to speak to the underlying issues. This woman was a broke, single mother with little or no support from the boy’s father and took care of her son alone. Those of us with children on the autism spectrum know what a daunting and exhausting task raising our child is. Now add the dimension of that child having a separate, life threatening disease.

From personal experience, I know that even the most prestigious hospitals can lack special protocols for children with autism, making their stay much more stressful than it needs to be. 

Late the second night after my child was admitted into a hospital, they moved him without warning to another floor. He became hysterical and there was no one there to be with him. The next morning, I walked into what I thought was his room only to find it stripped bare of everything, beds and equipment included. I went into shock thinking he had died in the night. This was just the kick off to six weeks of such horrific surprises and mistakes. 

Then once a child is released from the hospital, a parent is expected to become a full time nurse, charged with monitoring IV machines, stomach pumps, copious amounts of medication and whatever else it is that goes home with him or her.

What doesn’t go home with you is help and support. Already pushed beyond the human limits of endurance by a lengthy and harrowing hospitalization, parents are tasked with being their child’s medical caregiver, then held accountable should something go awry.

This is a very serious problem and endemic at our children’s hospitals. Public health nurses and respite care should be made available to the parents of seriously ill children after they leave the hospital, especially single mothers without the support of an extended family. Community support is generous for these institutions and special funds should be allocated to assist parents once their children leave the hospital proper. 

The woman in this tragic story needed other hands to help with her son. She needed to sit in a cafe and drink coffee or go for a walk. She needed to be part of his home medical team, not the whole show. Someone should’ve had her back.

3 Responses to In-Home Support Lacking for Parents of Sick Children

  1. Steve says:

    A friend of mine is a 26 yo single mom whose 7 yo son contracted meningitis. She has been forced to leave her job as a special needs educator in order to care for her child. Unable to pay mounting medical bills and especially prescriptions, she has been forced into prostitution to get enough money to pay for prescriptions. She has contacted 11 agencies in an attempt to find relief. Could someone please tell me if they are aware of any programs that can help this woman??? Please e-mail me at: fallinnycity [at] hotmail.com

    Thank you for your consideration,

    Steve

  2. Susan says:

    Good luck to your friend. It seems like it would be state and local rather than a national referral you’re seeking.

    -SM

  3. Susan says:

    I’m thinking you could call charities and churches on her behalf.

Leave a Reply

Your email address will not be published. Required fields are marked *

*

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>

 
 

Terms & Privacy Policy

All information in this site is presented for support and educational purposes only. It is not intended to substitute for medical treatment or visiting a licensed medical physician. Visitors who desire to apply or use any information listed herein are urged to consult with licensed healthcare professionals first. All information is deemed reliable but its accuracy can't be guaranteed.

Read our full TERMS AND CONDITIONS
Read our PRIVACY POLICY

Did You Know?

  • * In 1970, Autism affected 1 out of 10,000 children
  • * Autism now affects 1 out of 88 children
  • * Autism affects 1 in 54 boys
  • * 1.7 million Americans have some form of autism
  • * 4 out of 5 autistic children are boys

RSS Latest Article Entries

  • Foods For Thought: An Insight Into Special Diets February 19, 2014
    Diets: caveman, paleo, “ape,” low carb, low glycemic, zone, ketogenic, specific carbohydrate, GAPS, “grain brain,” “wheat belly”diet — why is there so much interest in these diets? What are they targeting? Is it gut dysbiosis/inflammation or food allergies, or insulin dysregulation, or gluten intolerance, the optimal primate food, or something else? Is there […]
 

Home - Autism Symptoms - Autism Videos - Autism Organizations - Autism Message Boards - Articles - Autism Recipes - Hyperlexia - Fragile X - Tag Cloud - AQ Test - Contact