A trip to the Emergency Room is traumatizing enough for anyone. Below, is a great article regarding the emotional experience of a child with Autism when receiving emergency treatment at the hospital. Parents, be sure to advise treating physicians and nurses that your child has Autism and to offer suggestions on how to best approach your child, such as dimming lights and speaking at a lower volume. The physician or nurse can also tell your child what he/she is doing next and demonstrate on him/herself, on you, or a stuffed animal so that your child knows what to expect. With your keen knowledge about your child's sensory profile, advise hospital staff regarding what sensory experiences may be overstimulating or off-putting, such as a constant beeping or those hospital 'smells', etc. And, let them know when to stop and back off if your child is showing you the signs that he/she is about to burst.
In the interest of your child's well-being,
Dr. Liz Matheis
By Pohla Smith / Pittsburgh Post-Gazette
The bright lights and noise in an emergency department or examination room can disturb and upset a patient with an autism spectrum disorder; so can the exam itself if the doctor does not use the proper approach.
Unfortunately, caregivers of patients with autism frequently report that a trip to the hospital can turn into a distress-filled struggle, getting in the way of proper treatment, according to a recently published online article by five emergency physicians, including three from Allegheny General Hospital.
Doctors need to understand autism, which is a range of complex neurodevelopment disorders, in order to help their patients, the article says. Overreacting to light, sound and touch is a common behavior found in people with autism. Some may not answer to their names and avoid eye contact with others. Responding to questions from a medical professional also may be difficult because people with autism often cannot interpret social cues such as tone of voice or facial expressions. Many children and adults with autism also make repetitive movements that may seem distracting during a medical exam or treatment, such as rocking and twirling, or that may threaten to harm themselves, such as biting or head-banging.
"Educational initiatives that make general physicians aware of the complexities of diagnosis and management of patients with an ASD are needed," the doctors write in Post Graduate Medical Journal.
"The rising prevalence of patients with an ASD makes it imperative that the general healthcare community becomes aware of the multidimensional nature of the ASD spectrum of illness."
The article, based on a survey of existing literature on how general physicians may handle patients with autism, provides common-sense tips on their care.
Most important, said lead author Arvind Venkat of Allegheny General, is "to listen to the caregiver and listen to the patient to the extent possible. They're very unique in how they interact. To take a knee-jerk approach and say this is how [doctors] react to a patient ... this is not the way to go. You really need to take time to talk to the caregiver to speak with [him about] how can we treat the patient in a way that's productive and not cause the conflict and stresses that we talked about."
That means finding out from the parent or caregiver techniques for touching the patient and what words to use, as well as what textures or smells that should be avoided.
It also means taking a detailed case history from both caregiver and patient, one that includes baseline behavior, communication ability, degree of sociability, dietary habits, pharmacological history, vaccination and menstrual history and sleep patterns, the article says.
Next important, said Dr. Venkat -- who has experience dealing with pediatric and adolescent patients from his medical training days and his emergency work -- is telling all the staff who will come in contact with the patient everything learned from the talk with the caregiver.
"The third part is you need to be willing to accept there are certain techniques that are very important ... an unorthodox way to approach the patient," he said. "You need to keep an open mind to approach the patient for his history and approach the patient in order to assess him."
The doctor should address the patient by saying something like, "I'm going to ask your mom how we can talk together," the article suggests. After the doctor speaks to the caretaker, he should repeat that to the patient, using his name to reinforce their direct relationship.
The doctor also should establish how the patient communicates yes or no either by asking directly or by showing how he can do so.
"I think the biggest thing is when you communicate with the caregiver, also communicate with the patient," Dr. Venkat said. "Multistep questions don't work with the patient. You need to be very methodical with the patient. Ask, 'Does your head hurt?' not, 'Does your head and back hurt?'
"When you're doing invasive treatment, make your patient understand the tactile and smell-related [aspects]. ... Allow the patient to feel the cast material [before applying a cast for a broken bone, for example]."
The article also suggests modeling things like splints or bandages on the caregiver or a stuffed animal and covering the materials with drawings or stickers for children or adolescent patients.
The doctor also should demonstrate each step of the exam on the caregiver or the stuffed animal.
Completion of tasks in the physical exam and diagnostic evaluation should garner rewards such as stickers or books.
The taste of medications should be considered; Pediatric formulas might be used for adult patients.
Doctors should watch for repeated movements such as swaying, tics or repeated phrases. "These behaviors can be comforting if the patient is in an agitated state," the article says. "If the behavior becomes rapid and intense in its repetition, it can also be an indicator that the person is about to become overwhelmed and explosive." If that happens, the patient should not be forced to stay still.
If possible, the exam should be done in a quiet room where the lights can be dimmed and equipment can be moved out.
The caregivers' beliefs also must be kept in mind, Dr. Venkat said. They often give their charges alternate therapies such as dietary supplements and other treatments such as chiropractic, acupuncture and neurofeedback and that must be respected.
"The parents that I've met are very invested, much more so than the [other] parents that come into the emergency department," he said. "The parents feel very, very involved with their child's care and are much more willing to question standard medical care. ...
"It's not being difficult. It's being an advocate for their family members."
Nevertheless, some alternate dietary therapies can have adverse side effects, and doctors have to be on the lookout for them. Most common are constipation or other problems with the gastrointestinal tract, which are frequently caused by the patient eating only certain foods, Dr. Venkat said. More rarely, the use of gluten-free and casein-free diets can place the patient at risk for nutritional deficiencies such as for vitamins A, B12 and thiamine, the paper says.
"You need to be prepared, not to question, but to be aware of side effects," Dr. Venkat said. "You have to point them out when they're causing harm to the patient, without being knee-jerk ... [but by] being much more diplomatic."
The other authors of the paper, which will be printed in the journal itself in a few months, are Candace Roman Crist and Robert Farrell, both third-year emergency medicine residents at Allegheny General, and Edward Jauch and William Scott Russell of the Medical University of South Carolina in Charleston.
This article was written by Dr. Liz Matheis and has been published with Special Needs.com Magazine, June 2012
The Journey of the Parent with a Special Needs ChildI think it’s time we acknowledge the internal emotional experience of a parent of a child with special needs. This is a journey, and there are times when you will feel traumatized or in disbelief with your experience, and times when you wish it would ‘all go away.’ As professionals, we spend a great deal of time providing information about ‘how to’ or ‘how to not’ and instead, I’d like to focus on validating your feelings and thoughts. I’ll describe this in terms of the phases that you are likely passing through or have passed through.
It’s not easy to seek the support of a professional, perhaps due to fear of being judged or criticized or perhaps because you are not ready to ‘go there.’ This is why you may seek the support of friends or other parents of children with special needs. However, there are times when you may want to seek the help of a neutral person who can help you reflect on your inner most emotions and experiences, regardless of how ‘un-mommy like’ they may be. It’s okay to admit to yourself, and out loud to another person, that this is not what you planned for, this is not how you wanted motherhood/fatherhood to be, that is not what you wanted. It has become my mantra to assure parents that it’s okay to feel that the last X years are unfair to you, or that you’re tired and you wish for a different experience in parenting. This does not make you a ‘bad’ parent or a selfish one. Instead, it makes you human, overwhelmed, and done for the day.
The “Ineffective Parent” Experience
I know that parenting your child with special needs often leaves you feeling ineffective and out of control. This is not how you expected your parenting experience to be perhaps because you perceived your parents to be very much in control of their children. In fact, at times, you feel may embarrassed because you can’t ‘control’ your child in public or during family or friend gatherings.
It’s okay. You may feel out of control right now, but keep in mind that your parenting experience is very much influenced by your perceptions of parenting and your experience of being parented. You may have lots of ‘shoulds’ in your head about how you ‘should’ be parenting and how your child ‘should’ be responding to you. Explore those childhood experiences and open yourself up to the feelings you had towards your parents. Perhaps it was a happy childhood experience, but maybe it wasn’t. Allowing yourself to be honest with you about these underlying, perhaps even repressed, experiences and emotions is tough because they can sometimes be raw and intense. It will take time to process and understand, but this will also help you to understand the source of that background tension and anxst that seems to bring you down and impact you daily.
Once you reach this phase, you will wonder why you didn’t get here earlier. You are likely to feel relieved because you are more at ease with your child and your parenting experience. You are also likely to want to reach out to other parents to help them to reach this phase and find the same sense of peace that you now have. This is also the point when you are ready to share your experience and your journey.
This will be a journey indeed. You may find yourself making progress and then falling back to an earlier phase. It’s okay. Embrace the reason, explore it, and move forward. In the meantime, I hope you find the peace that you are seeking, and allow yourself to feel the unbridled joy and love that your child brings to your life, family and community.
Written by: Dr. Liz Matheis See other articles by Dr. Liz Matheis
About the Author:Dr. Liz Matheis is a clinical psychologist and school psychologist in Parsippany, NJ who provides assessment, psychotherapy, consulting, and advocacy for children and families managing autism spectrum disorders, ADHD and learning disabilities (www.psychconsult.weebly.com). She is also a contributor to several popular press magazines
This is an essay prepared by a mom of a child with special needs. She describes the ideas and ideals she had about motherhood, and how her 'dreams' were changed when faced with her reality of a son that didn't bond with her in the way she had always envisioned. This speaks to the raw and intense emotion that comes with facing a reality that a parent didn't dream of, but describes how she made peace with the wonderful and amazing son that she has been blessed with. Read on!
Writing our Journey: Poems and Essays by Family Caregivers
The Elizabeth M. Boggs Center on Developmental Disabilities
UMDNJ-Robert Wood Johnson Medical School
Words join us, sustain us, complete us. For my son Eric and me, it’s been a slow
journey to build such a bond with words. Let me explain.
When I was a child I loved dolls, real baby dolls not fake Barbie dolls. I played
with baby dolls long after my friends had stopped. In fact, there was only one
thing I loved more than a baby doll, and that was a real baby. So, I babysat as
much as possible, always loving my time with babies. I could comfort really fussy
babies and always felt pure joy being with them. I couldn’t wait to grow up, get
married and have four boys whom I would love and cuddle. My boys would love
me and know me as their Mom. To be a Mom, that was my dream.
Many years later I was elated when I gave birth to Eric, my first baby. I can still
hear the Doctor pronouncing that I had given birth to a beautiful baby boy. He
was the best Christmas present I had ever received. I couldn’t wait to snuggle
MY baby boy. I was ready for the rest of my dream to unfold.
The following days unfolded, but not as I had envisioned. My baby was in the
NICU; he was very sick. He was miserable, rarely taking a break from crying.
The bleak situation was compounded by the fact that I was not allowed to pick
him up, I was not permitted to cuddle my baby! The first weeks with Eric were
reduced to hovering over him in an incubator and stroking him with a single
The feeling that my dream was turning into a nightmare was confirmed when I
looked up one day to see a sign above my baby which read “irritable”. He was
near impossible to comfort, but at the time I didn’t know that babies with
developmental disabilities, specifically cereal palsy, are often labeled “irritable” as
they are difficult to comfort. All I knew was I felt awful for my tiny baby. While
Eric cried, I was beginning to wonder if I was already a failure as a Mother. Why
couldn’t I comfort him? What was wrong with me? Why was I being rejected by
Weeks later when my baby finally came home, my childhood vision of
motherhood seemed even more elusive. There was no snuggling and very few
quiet, bonding moments. Not with my baby. The truth was that my son was
irritable, really irritable. He insisted on being walked while being held in the
“football” hold. When not moving and facing the ground, he cried. And cried.
And cried. He was a poor sleeper, seemingly never sleeping soundly unless it
was time for his every-three-hour forced feedings and blood sugar checks.
Exhausted and heart broken, every three hours my husband or I would return to
our new routine: warm the milk, put on upbeat music, began the hour plus effort
to get Eric to drink a few cc’s of milk, listen to our baby scream as we checked
his blood sugar and then back to “walking the boards” with our now wide awake
and most unhappy baby. So it went, in three hour increments day after day. It
felt like each time we finally got Eric calm or asleep it was time to start with the
force feedings again…
I had so many hours to contemplate my inability to comfort my son. The son I
had dreamed of all my life. I had gotten exactly what I had dreamed for, except I
didn’t. My baby was different. My baby was sick. My baby was hard. My baby
seemed to reject my efforts to comfort him. I was disappointed, I was profoundly
sad. How could it be that after all the years of practice, I couldn’t make my own
son happy? What was I doing wrong?
My perceived rejection by my son went to my heart, to my soul. After months of
being home with Eric I couldn’t take it any more. Instead of taking a one year
maternity leave as planned, I returned to my career after only six (long) months.
I couldn’t stay home, I was a failure there. I was depressed. I needed to get out.
I needed to feel successful again at something, anything.
It was decided my husband, Bill, would take a paternity leave and care for Eric.
Bill was up for the challenge and didn’t take Eric’s behavior personally. Bill never
felt rejected by Eric. Soon my husband decided to quit his job, and while
maintaining his role as primary parent, he returned to school to become a
Physical Therapist. Upon graduation he obtained a part-time job in a school
working with children with special needs.
So, while my husband “held down the fort” and began a career in the special
needs world, I dug deeper in a different direction, into a demanding corporate
career. I was having great success at work and my pay check reflected that, but,
it came at a price. I often came home tired and impatient and that combined with
my very demanding and hard to comfort son, didn’t bring out the best of either
one of us.
I was rarely the preferred parent, and that stung. Intellectually I understood why
Eric was more comfortable with my husband, because they spent a great deal of
time together. However, the pain of his preference went through my heart to my
soul. I continued to feel rejection from the baby boy I had dreamed of all my life.
As the years passed Eric and I forged a strong bond. It was not always pretty,
but our love for each other was understood. Thankfully, all those feelings of
rejection have begun to fade. Things started to really change when I retired from
my draining job and I began my journey of healing. With renewed energy I found
more patience for many things, most importantly my son. I no longer take his
moods so personally and our relationship has grown more positive. I take more
care to avoid his “triggers” and I no longer abruptly leave conversations when he
turns them negative. Instead of being hurt and rejected by things he says, I sit
quietly with him. I try to be present and to accept the moment as it is without
bringing in the pain, the rejection, of the past.
I have also started making a point to say ‘thank you’ to Eric at every opportunity -
when we have a good conversation or a good time together. My “thank you” is
always heartfelt. I am profoundly thankful when we are sharing a bond I know he
has with only me, his Mother. These moments are made perfect when I am
rewarded by my son saying “Wel come, Mom”. Although perhaps unintelligible to
an outsider, these words ring clear through to my heart. For they represent the
fruition of my dream, which began in childhood, of that special bond a mother
feels with her child.
© Lisa N.
The Individuals with Disabilities Education Act of 2004 has been revised as of March 28, 2012 regarding independent education evaluations (IEE).
In the past, when a parent requested an IEE, the school district had the right to conduct the assessment before parents were granted an IEE. As of March 28, 2012, when a parent requests an IEE, the district must provide the evaluation, at no cost to the parent!
Parents, keep this information in the back of your mind. If you are at an initial planning or re-evaluation planning meeting and feel that there is an assessment that you would like completed independently of your public school district's Child Study Team, put your request in writing.
Read the letter sent from Peggy McDonald, Director of the Office of Special Education: http://www.nj.gov/education/specialed/memos/051412Evals.pdf
Dr. Liz Matheis
Dr Liz Matheis and her team specialize in assisting children and their families with Anxiety, Autism, AD/HD, Learning Disabilities and Behavioral Struggles