The Magic of a Mother's Touch

Kristzina Konczos on Flickr
When mothers sooth their infants, their actions actually lessen the infants' pain, according to new research from the NYU Langone Medical Center. The mothers' care-giving not only influences the infants' behavior, but also affects the infants' brain development.

“Our study shows that a mother comforting her infant in pain does not just elicit a behavioral response, but also the comforting itself modifies – for better or worse – critical neural circuitry during early brain development,” says Regina Sullivan, PhD, the senior investigator of this study.

Sullivan presented her findings at the American Society for Neuroscience meeting in Washington D.C. on Nov. 18. These finding are significant as they explore alternative methods for pain relief in infants. New pain relief methods are needed as traditional opiate-based pain relievers are harmful to infants.

Nobody wants to see an infant suffer...,” says Sullivan. “But if opiate drugs are too dangerous to use in human infants because of their addictive properties, then the challenge remains for researchers to find alternative environmental stimuli, including maternal presence, coddling, or other cues, such as a mother’s scent, that could relieve the pain.”

©Mary M Conneely T/A Advocacy in Action

9 Ways to Prevent and Respond to Autism Wandering

John Morgan on Flickr
Almost half of all children with autism wander or elope -  they run away from their home, school or other safe place.  Wandering is particularly dangerous for children with autism because of poor communication and social skills as well as low safety awareness.

Because of their difficulties with communication and social skills, children with autism may not respond if their names are called during a search.  They may be unable to ask for help if needed.  Some children with autism don't recognize the dangers posed by traffic, bodies of water, abandoned buildings, etc. because of a lack of safety awareness.

There are some steps parents can take to try to prevent wandering and minimize the danger if their children do wander.

1.     Triggers

If your child wanders, keep track of the circumstances leading up to his running away.  See if there is any pattern or trigger you can identify.
Clover Autrey on Flickr

2.     Stop signs

You can try to teach your child boundaries by putting pictures of stop signs or do not enter signs on doors and windows.  You can ask your child’s school to do something similar.

3.     Alarms

At home, you can install an alarm system that covers all doors and windows.  If you cannot afford a full alarm system, you could purchase individual motion detectors and place them on exits your child has access too.  Consider putting bells or wind chimes on doors so you immediately hear that the door was opened.

4.     Educate

Teach your child about dangers such as traffic and water.  Social stories are a great way to do this.  One Place for Special Needs has free social stories on safety issues.  Picto Selector and ConnectAbility are two websites that you use to write your own social story.  More information and resources for writing social stories is available on PBIS World.

5.     Get to know your neighbors and neighborhood

Chris Dlugosz on Flickr
Explore your neighborhood to look for potential dangers that you need to teach your children about.  Provide your neighbors with a short information sheet on your child.  Include your child’s picture, her diagnosis and what it means in practical terms, your contact information and how they should approach your child.  You should convey this information to your local police and other first responders.  L.E.A.N.  and Autism Services have free child safety cards you can download and complete.

6.     Make a wandering response plan

If you think your child has wandered, it is very easy to panic and not think clearly.  Therefore, take the time to develop a wandering response plan before it happens.  The plan is a list of things you need to do including contacting emergency services, faxing or emailing your child’s photos, getting a search group together, etc.  AWAARE has a response plan template you can use to make your own emergency plan.

7.     Swimming lessons
Lotzman Katzman on Flickr

Teaching your child to swim could save his life.  Many children with autism are attracted to water and not aware of any potential dangers.  Enrol your child in swimming lessons.

8.     Consider a tracking device

There are varieties of devices on the market that can track your child.  Friendship Circle and AWAARE have information about the different devices available.

9.     Get identification for your child

Identification will help if your child gets lost or wanders off.  You can include her name, your contact information, her condition and more information depending on the type of ID you choose.  There are
Vital ID

Please share any tips you have to help keep children with autism safe!

©Mary M Conneely T/A Advocacy in Action

Hundreds of kids poisoned by laundry detergent pods

Small, colorful laundry detergent pods are a poisoning risk for young children, reports a study published in Pediatrics on Nov. 10. Over 17,000 cases of children’s exposure to chemicals in the laundry pods were reported to U.S. poison control centers in 2012 and 2013, according to researchers at Nationwide Children’s Hospital in Ohio. In that same period, more than 750 children were hospitalized for injuries arising from exposure to chemicals in the laundry pods.

Most of the injuries in this study resulted from one to two-year-olds ingesting the pods. Ingestion of the pods caused vomiting in nearly half of the children. Children also suffered from coughing and choking, drowsiness and eye irritations from the detergent pods. Ingestion of detergent pods can also cause burns to children’s mouths and throats, problems breathing, esophageal perforation and skin rashes. In addition, the death of one young child, a 7-month-old boy, occurred after he ingested a laundry detergent pod.

Another recent study highlights the risk of serious eye injuries from the
US CPSC on Flickr
detergent pods. In that study, 10 children received significant corneal injuries when detergent got into their eyes after biting or squeezing detergent pods.
“Laundry detergent pods are small, colorful, and may look like candy or juice to a young child,” saidMarcel J. Casavant, M.D., a co-author of the study. “It can take just a few seconds for children to grab them, break them open, and swallow the toxic chemicals they contain, or get the chemicals in their eyes.”

Although at least one detergent manufacturer changed its packaging, researchers say more needs to be done. “It is not clear that any laundry detergent pods currently available are truly child resistant; a national safety standard is needed to make sure that all pod makers adopt safer packaging and labeling,” said Gary Smith, M.D., Dr.PH, the study’s senior author. “Parents of young children should use traditional detergent instead of detergent pods.”

Nationwide Children's Hospital Video Grab
In March 2013, the U.S. Consumer Product Safety Commission (CPSC) issued a public warning about the dangers of liquid laundry pods. It urged parents to keep these products away from children as “water, wet hands, and saliva can cause the packets to dissolve quickly and release their highly concentrated toxic contents.” The CPSC advises families to take the following steps:
  • Do not let children handle the laundry packets.
  • Keep the liquid laundry packets sealed in their original packaging, and make sure they are locked up and out of a child’s sight and reach.
  • Ensure your hands are dry before using a laundry packet/capsule, and wash and dry your hands thoroughly after each use.
  • If swallowed or exposed to the eye: immediately call Poison Help at: 1-800-222-1222 in the United States. If swallowed, rinse as much of the detergent as possible from the mouth. If exposed to the eye, flush the eye with water for at least 15 minutes.

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Realising Equality through Active Participation

3rd December 2014

9.30am to 4.30pm

Davenport Hotel, Merrion Street, Dublin 2

Held to coincide with the International Day of Persons with Disabilities, this event from Áiseanna Tacaíochta (ÁT) will examine the evolution and lived experience of Independent Living and Direct Payments for people with disabilities in Ireland, and the ways in which society can come together in solidarity to promote equality and active citizenship for all.
The event is set to be a day of great insight and opportunity, forging new ways to securing true inclusion and equality for everyone.  On top of exploring the lived experience of disability in Ireland, Realising Equality through Active Participation will highlight the huge differences that these approaches - such as ÁT's model of Direct Payments - can make to that experience.  Leaders of this model, along with their family members, community networks and supporters, will discuss why they chose to adopt Direct Payments and support this model, the new possibilities it opens, and the reasons why it is important to them.
Sara Burke, journalist and policy analyst, will act as our chair for the day, and Madeline Clarke (Genio), Pat Clarke (Disability Federation of Ireland), Michael Doyle (Irish Wheelchair Association), Mark Blake-Knox (Cheshire Ireland), Owen Collumb and Martin Naughton (founding members of ÁT) will stand among our exciting range of speakers, with many more to be announced in the coming weeks.
ÁT is challenging society to move towards a more fair, equal and inclusive future for all.  Everything we do is underpinned by the values of human rights and Independent Living, and your attendance at this event will represent another step forward to making this the reality for all.
This event is open to everyone, and is free to attend.  If you have any dietary or accessibility requirements - such as sign language interpretation or access to hearing loop systems - please get in touch with us at, and we will do everything we can to accommodate them.  Without any obligation, we would gratefully accept donations of €10 from anyone able to give it on the day.
Click here to register.

Brittany Maynard and the Right to Die with Dignity

The BrittanyFund.Org
Brittany Maynard died as she planned on Nov. 1. Her death brings new life to those campaigning in favor of the right to die with dignity.

Maynard, age 29, and in the prime of her life, assessed her future after receiving the diagnosis of stage 4 glioblastoma. She knew that radiation or chemotherapy might buy her some time, but that time was at a cost. There was no guarantee the treatment would help her. It was likely to make her sick and worsen her quality of life. Maynard decided against treatment, as she wanted to make the most of the time she had left.

Maynard researched glioblastoma and how it would affect her as the disease progressed. She knew she would suffer and may not get adequate pain relief. She chose to take control of her body and decide when her life would end. Thankfully, she could do so in a legal way.

People against the right to die criticize Maynard’s choice to end her life. They argue that legalization of assisted suicide endangers the elderly, disabled and people with chronic illnesses. They assert that families and insurance companies will use assisted suicide to get rid of patients for their own financial gain. They argue that a legal right to die will evolve and eventually all unhappy people will be able to end their lives.

These arguments are without merit. Properly drafted laws and regulations will
You Tube (Compassion Choices)
minimize the potential abuse of the right to die with dignity. No one opposed to the right to die with dignity offers objective evidence of widespread abuse of this right where it is legal.

Diane Coleman of Not Dead Yet offers palliative sedation as the legal alternative to the right to die with dignity. In an article for CNN, Coleman states, "advancements in palliative care have eliminated pain as an issue for patients who receive appropriate care." She described palliative sedation as a legal solution that "does not raise the very serious difficulties that legalizing assisted suicide poses.”

Coleman's characterization is incorrect. Palliative sedation is controversial and complicated. Numerous medical journal articles describe the difficult issues surrounding palliative sedation including:
  • the principle of double effect
  • lack of uniformity in guidelines for the use of palliative sedation across medical institutions
  • deciding whether to withhold hydration and nutrition with palliative sedation
  • whether palliative sedation is euthanasia
  • obtaining informed consent
  • insufficient proof that unconscious patients do not experience pain

The medical community is still debating these issues.

In addition to the practical and ethical problems raised by palliative sedation,
You Tube (Compassion & Choices)
there is the issue of choice. By the time palliative sedation is an option, patients are in great distress and near death. It is not their choice. Typically, family members decide, not the patients.

I wonder how many people, like Diane Coleman, who oppose the right to die have witnessed death. Not just any death, but a slow, degrading and painful deterioration of your body until you take your last breath.

To watch someone you love in uncontrollable pain is torture when you know their pain will only end with death. It is humiliating for people when their physical functioning deteriorates as they die and they become dependent on others for help with basic bodily functions. How sad it is for people who are dying to think that they are now just a burden to their families.

Medical advances mean a lot of pain is manageable, but not in every case. Who are we to decide that a person must endure days, weeks or months of unbearable pain and emotional turmoil? We do not have that right. That right, that choice, belongs to the patient.


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©Mary M Conneely T/A Advocacy in Action

Many Children with ADHD Receive Inadequate Care

Credit: Naval Surface Warriors on Flickr
The treatment of children with
ADHD in community based pediatric settings is lacking and does not comply with guidelines, reports a study published 3 November in Pediatrics.  Researchers found the diagnosis and treatment of ADHD deficient in several areas including:
  • Over reliance on drugs to treat ADHD without any behavioral or psychotherapy
  • Lack of timely follow-up when children start medications for the treatment of ADHD
  • Lack of interaction with children’s parents and their schools about children’s daily activities and the effects of any prescribed therapies
  • Failure to consult the Diagnostic and Statistical Manual of Mental Disorders when making an ADHD diagnosis
  • Failure to review “behavioural rating scales” from parents and schools when making an ADHD diagnosis

"The quality of care seems to be very low and not in accord with American Academy of Pediatrics guidelines," said lead author Jeffery Epstein, director of the Center for ADHD, Behavioral Medicine and Clinical Psychology at Cincinnati Children's Hospital.

The American Academy of Pediatrics recommends that physicians look at the
Credit:  Microsoft
following factors when considering an ADHD diagnosis:
  • Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition,
  • Reports from parents
  • Input from teachers including a complete “validated ADHD instrument” or behavioral scale
  • Information on the child’s behaviour among peers and in the presence of authority figures
  • Interview with the child
  • Results of a comprehensive physical and neurological examination
  • Other possible causes

Once a diagnosis of ADHD is made, physicians should:
  • Educate the child and family about ADHD
  • Provide information to the child’s school on the ADHD diagnosis and child’s needs (after obtaining parental permission)
  • Develop an ADHD management plan that includes a care plan for the family and a follow-up plan
  • Monitor progress during treatment including a four week follow-up visit if medication is started
Epstein advises parents with any concerns about their children's diagnoses or treatment to talk with their doctors.


©Mary M Conneely T/A Advocacy in Action