Autistic Children and Their Parents’ Need to be Understood

A few years back I wrote an article for Hot Psychology Magazine about a concerning a special program called the My Stories Program, which at the time was new program, offered to the palliative care patients living at the Hospice of Michigan.

The program not only enriched the quality of life for the patient it enriched the lives of their families as well.  Here was a program designed to have dying people connect one last time with the people they loved by recording their life stories and leaving a legacy to their families that would reach far beyond the grave. 

The psychological impact upon both family and patient has many healing properties. It provides information, it fosters a sense of importance for the palliative care patient, it gives a sense of self and the offering of one’s self to others, it facilitates the ability of family sharing and is particularly healing for the person who is about to leave the world. When all is said and done, the palliative care patient can leave the world knowing that fences have been mended, love has been expressed and forgiveness, which is a crucial element in some families, has been offered or accepted.

Families are distraught, as they know they will soon be losing a love one.  They are not sure how they will be able to go on without their love one in their lives.  Some young families are saddened that their own children would never know the joys that their granddad, or grandmother brought to the world. 

Of course the memory would be kept alive through the parents telling stories of their mom, dad, uncle, aunt, or any precious family member, but it could never be the same as actually knowing this much beloved family member in their own lifetime. 

Of course there are the stories retold by the surviving family members, but these stories are often biased.  People will be selective in their memory, focusing on certain things, which has more importance to them, while other important things might be left out.  It is a psychologically known fact that two people will recount the same situation yet both will be telling it from a different perspective.  The recount could be correct in both cases but very different.   For example, a child who may not have been that close to their father during his lifetime might say,
“ I remember my father’s hands, they were rough and reflected his cold demeanor.  He was always out working and I never got to see him much as I was growing up.  When he was home he had little time for me, or my siblings.”
The same story about the father’s hands, told by a child who was close to his or her father could go something like this,
“I remember my father’s hands, they were working hands, rough and callused. My dad worked so hard to provide for our young and struggling family.  But when he held me in those big rough hands, I didn’t feel the roughness, I didn’t feel the calluses, I felt his gentle touch and I felt love and protected. I welcomed those strong hands which I knew would always keep me safe.”

A children or any other individual hearing these stories will get a completely different understanding of the individual based upon the bias of the storyteller.

There are of course pictures and videos, and personal writings to get a clue into the mind and character of the loved ones no longer with us, however not everyone has spent a lot of time writing about their lives. Many important papers and pictures have been destroyed through fire, or lost during moves and so on. Many older people have lived through troubling times, immigrating from war torn countries and much of their valuables were left behind.  Though oral histories are rich in culture some victims of world atrocities were too traumatized to ever talk about it.  Other people who had never witnessed these atrocities may never have been much of a talker, feeling their personal experiences should be left in the past or was not important enough to share or burden their family with.

The My Stories Program is an audio program designed for the patient to bring to the surface the part of their history, which was never talked about before.  It is also designed for the palliative care patients to talk about anything, tell jokes, offer guidance, forgive family members they never had a chance to do before and so on. The my stories program is a way for the patient to say their last words, to get off their chest all things they feel that need be said before the end.

This program is also designed to represent the here and now and to not only recount things about the past but to speak directly to the love ones addressing issues that need to be addressed before it is too late. 

Hospice of Michigan, president and CEO, Dottie Deremo, recounts that many of the family members have expressed how they wished they could hear the voice of their loved one.  How they long to hear the laughter, the chuckles, the soothing tones, once more.  It was for this reason that the program was set up so the patient’s could record anything they wished their families to know before they became too ill to do so and for the family members to hear that voice, the laughter, essence of their being over and over again.

For some patients this program helps them clear up unfinished business that the family never seemed to get around to do it.  Sometimes it was a matter of living too far away, and sometimes it was words left unspoken during a lifetime because they may have been too painful to bring up. To hear their loved ones finally dealing with the issues and offering forgiveness, asking for forgiveness, or admitting accountability, whatever the case may be provides a healing modality for all parties concerned.

Other people like Mike Stammis wanted the audio video-recorded interview so that he could speak to his boys directly.  Mike and family know that he will pass away before his children grow up and reach manhood. Mike a brain cancer patient, wanted to tell his boys how proud he is of them and that is the thing they are to carry with them the rest of their lives.

The audio My Stories program is a part of a holistic treatment system to give comfort to those who are in their end stage of life. It is also designed for the comfort and support of the beloved family members who will be left behind. 


This audio program is a volunteer program and it is not meant for all patients.  Some patients will be too ill to embark on such a project, other may be uninterested or uncomfortable about recordings and therefore opt out of the program.

However, for patients and their families who wish to participate in programs like these, they offer social, psychological, spiritual, and a strong physical presence of the soon to be departed love one. Families will still have a strong sense of the their departed loved one and the palliative care patient can achieve another level of peace and understanding as they prepare to leave this world.


Autistic Children and Their Parents’ Need to be Understood

Autism has been in the news a lot lately, especially due to the controversy centered on vaccinations and the possibility that they could cause autism in children. The medical community has stated that they do not, but parents such as Jenny McCarthy disagree.  Parents cannot seem to get through to their doctors anymore.  Parents observe a change in their children after the vaccine and the doctors ignore it. 

There is nothing more devastating psychologically for a parent of an autistic child than to feel in their gut where the illness started and why and then be shunned by the people they need help from the most, which happen to be their doctors.  Parents feel powerless as they watch their children trapped in a world inside of their heads, isolated from the outside world, and often unable to communicate their very needs.  These parents must fight for their children’s rights and they must fight for their children’s ability to have as normal a life as they possibly can.

Parents of autistic children are incredible individuals who must have the patience of Job. If there are days that they feel down and out of it, they cannot show it; at least this is their understanding. They have to be strong for their children’s sake.  However, they often take it to the extreme.

There is a quality about caregivers, they are “so loving” and give so much care that they forget that they too need care.  They often isolate themselves from a social life, rarely associating with other parents.  After all they have nothing in common with parents of normal functioning children.  When one mother brags about her infant smiled for the first time, can a parent of an autistic child then comment how her child is 8 years old and has yet to smile?  Who can relate to that? Or, when another mother proudly says that her 8 year old helped her bake cookies earlier that day, can the parent of an autistic child then reply that her 10 year old screamed non stop for 2 hours and banged his against the wall for another hour earlier on that day?  There just does not seem to be any common denominator for these parents to share their experiences with parents of normal children and there is no one more aware of that than the parent of an autistic child.

Autism is a developmental disorder, which affects the body’s sensory system.  These children have difficulty communicating with the world. Now imagine being a parent of an autistic child and not being able to communicate your concerns about your child with your friends or your doctor and worst of all not being able to communicate with your own child. As a parent can you begin to imagine if you could not hug or kiss your child and him or her respond in kind?  The reality for autistic children and parents of autistic children is so different than the reality of parenthood, which most parents can understand.

Symptoms of Autism

According the DSM-IV – Diagnostic and Statistical Manual of Mental Disorders, there are 12 symptoms and an individual must exhibit at least half of them to get the diagnosis. I would not be able to list all 12 here, but any one wanting further information can google it.  I will provide just a few to give an idea of the magnitude of the disorder.

Social interaction

Autistic children or adults have difficulty developing good social skills.  There nonverbal behaviors such as smiling, nodding and so on are impaired.  They have problems in developing peer friendships. They are not spontaneous in joining in the interests of others, for example playing and sharing toys, and they are unable to exhibit social or emotional sharing. 

Communication

Another huge category is communication, here we have children and adults who are unable to talk or they have impaired language development.  In the case of autistic individuals who can talk, their speech is limited, repetitive, and does not necessarily flow in a conversation.  http://www.autism.org/dsm.html

Medical breakthrough

In January 2007, a little autistic boy with a big blue hug made Montreal CTV news. Jason Goldsmith reported to CTV that he was never able to get through to his son.  He said Ellis did not show any difference between his parents or the furniture.  No doubt the Goldsmiths’ were heartbroken and so frustrated, until a major breakthrough occurred. Ellis found a median to communicate and he did it through his drawings. With the help of an art therapist, Ellis was able to draw a big blue hug to show his father what he wanted from him.

Ellis has shown the world that he does need and want love. He has shown his father that there is always hope and he can be reached. There is a little person inside that shell and that little person wants so much to be understood.

If anyone is interested in the Ellis’s story, his father has created a website: http://www.thebigbluehug.com/

Different levels of autistic impairment


There are of course several levels of autism and some children will be more functional than others.  I recently had the privilege in sharing in the joy a personal friend of mine has with two autistic sons when his 21-year-old autistic son graduated from high school.  The joy of this father and the pride he displayed is priceless.  I admire my friend and I take pride in his son’s accomplishments.  I also know how hard this man has worked to get his boys up to the level of functioning that they are experiencing at this moment. My friend Joe is a parent among parents and a model for all caregivers.

Jason Goldman thought his son did not know the difference between his parents and the couch. He soon found that his son knew the difference; he just did not know how to show it.  My friend believed in the potential of his boys from the very beginning and his boys responded in kind. The children are different and their level of functioning is different. Even though they are boxed in the category of autism they have proven that we should never box them in further by our own biases and misunderstanding of the disorder.  We must always keep an open mind and constantly find ways of making their lives better.  


The message here is never to give up. Give your autistic child the benefit of the doubt. Though you may not know what is locked up in his or her mind, your love and guidance, such as displayed by my friend Joe on a daily basis is what will make your child’s life worth living. That psychological support will carry your children through their entire lives, even they do
not appear to be able to reciprocate.