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Recovery Room on Grandparents – The Unsung Heroes of the Autism Epidemic

Grandpy handManaging Editor's Note:  That's my now 90 year old Dad holding onto Bella.  My Mom and Dad, like Julie's, have been lifesavers for my husband and me.

By Julie Obradovic

A recent post on The Thinking Mom’s reminded me about the roles grandparents play in the autism epidemic. I believe in many cases they are the unsung heroes of much of what we’ve been able to accomplish in the pursuit of health, truth, and justice. I know for me personally, there’s no way I could have saved my daughter, kept my sanity, and found time to advocate were it not for my parents on both sides. No way.

Thinking about them actually brings tears to my eyes, especially when I remember my mother making an honest, quiet comment to someone in a conversation years ago. I don’t remember it word for word, but I do remember the gist of it: how hard it was not only to watch your grandchild suffer, but your own child as well, and mostly how helpless and painful that felt.

The thought stopped me in my tracks. For so long I had been completely wrapped up in my own pain. It had never crossed my mind to think about how she felt, or how my father felt, or how my in-laws felt. I was completely focused on my daughter and myself, oblivious to the toll this was taking on them.

I thought about it then. What was it like for her, watching me in so much pain? Was she walking on eggshells around me? Of course she was. Truth be told, I’m not the easiest person to deal with when I’m on a mission. No one knows that better than my mother.

On a few occasions we came to blows. As always, she was right. I was out of control, taking on more than I should. Forgetting to take care of my other children and relationships with the same intensity. Trying to save the world, but not making time for a nice meal with my family.

She insisted I come to terms with my anger and would constantly tell me she was praying for me. It would anger me, as stupid as that sounds.

Don’t pray for me! Pray for Eve!

Most of the time though, she was my biggest rock. Mom got Eve on and off the bus everyday, making sure the harness was right each time. Mom watched the other two while we went to this doctor and that doctor. Mom bought us gift certificates for date nights with babysitting included so we could remember our marriage was equally important. Mom bought the tickets to my first autism conference…and went with me.

Mom (and dad) sat us down and said whatever we needed would be done and paid for. And it was.

Mom was the one who got into it with the pediatrician when he tried to tell me that some kids just shake their heads, flap, and stim for no reason. She was not having that, and she let him know.

“I’ve raised three children, many nieces and nephews, and have watched many of my friends’ children grow up as well. That is not normal!”

I was and always have been in awe of her.

My in-laws were equally supportive. My mother-in-law is a caterer. They are immigrants from a poor village in Eastern Europe. There is no such thing as “organic” to them. It’s just food; food that you grow in your yard and store on dozens of shelves in glass jars in the basement. Food is everything for them. Food is love. And if we needed anything at all for the diet, we got it. (I have often told my “mamma” that if she ever wants to be rich, all she has to do is begin a biomed catering business!)

Together, we all recovered Eve. Their role, emotionally, physically, and financially is incalculable. And I am ashamed to admit, I’m not sure I’ve ever properly thanked them. Here goes:

Thank you, mom. Thank you, dad. Thank you, Baka and Dida. Thank you, thank you, thank you. A million times, thank you.

That said, I thought it would be nice to let them speak for themselves. I interviewed my mom and asked her for her perspective on the whole thing. I think she probably speaks for lots of grandparents when she shares these things. I hope you read them with an open heart and that tonight, in addition to our children, you add them to your prayer list. The grandparents are helping and hurting too.

How soon did you realize there was something wrong?

This is hard, but I suspected Eve was having problems when she was an infant - around her 1st birthday.  I felt she was having developmental issues.  She wasn't making eye contact and had little to no baby babbling.  Her responses were slow with little emotion and she didn't interact with "patty cake" or "so big".  Also, her abnormal drooling, and logrolling (instead of crawling) added to my suspicions.  She was a late walker, and I felt that her gate was abnormal and unsteady.  I thought that maybe some of her unsteadiness was due to her repeated inner ear infections.   

Another thing was her need to rock back and forth.  When she was 2-3 I took her to the Dora the Explorer live show with my friend and her granddaughters.  That is when I really knew, because she didn't interact with the children at all.  During the entire show she stared at the spinning colored circles on the ceiling. She showed no emotion, never watched the show, just held her ears and watched the circles.  At her 3rd birthday party, I watched her laying on the kitchen floor stimming and again no interaction with any children.  I had never seen a child stim before Eve, and I knew there was a problem.

Were you afraid to tell me?

It wasn't an easy topic to discuss with you.  I talked with your grandma, your aunts, and my friends about my suspicions.

Did you ever have doubts about what we were doing to help her?

No - I didn't.

How did it feel to watch her slip away and see how it affected us?

It was very difficult.  I worried about Eve and about you and Matt individually and your marriage as well as the other two kids.   

Did you feel like you didn’t know your place?

No, I knew my place was to support Eve, you and Matt and the family.

How do your friends feel about the autism epidemic and the current health of our kids? What is your perspective?

All of my friends believe that there is a huge autism problem today that did not exist 30-40 years ago.  None of my friends or their children suffered from autism or severe allergies like today. I knew no one with autism growing up or during the time I was raising my children in the 70's and 80's.  I never heard of autism until the St. Elsewhere television program in the 80's.  We all know this didn't just happen without a cause.

How do you respond to the idea this has always been this way?

Hogwash!  That is nonsense, and no statistician can prove that theory.  They simply can't because autism was extremely rare - so rare that most people never knew anyone who was autistic or even heard of it before the 90's.

What is like to watch Eve make so much progress?

Exciting and joyful!

Do you still worry about her?

Not worried, but concerned how she will respond to her challenges.  I pray that she will find good friends to help her along her way and that she will develop her talents and not be defeated by her limitations.

What do you want parents to know about what grandparents are going though?

Just that grandparents only want the best for their children and grandchildren, and that it is hard for them too.  I would tell parents to trust their own parents’ insights because they have wisdom from their parenting experiences, and this is often overlooked or rejected.

Julie Obradovic is a Contributing Editor to Age of Autism.

Comments

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Christine MacVicar

There is another whole side to this story. I am sure that there are grandparents out there like me who has care of an adult with autism. I acutely feel that my grandchildren are missing out on the unique relationship that others have. Just like my son and daughter, they are having to take a back seat to their autistic uncle.
Re the genes comment, my grandfather died from lead poisoning. When is this sort of history ever sought by a psychiatrist?

jackie

And the story is beautiful. Thank you for sharing that!

jackie

That picture is absolutely priceless.
Jackie

Cherry Sperlin Misra

Friends, This is a topic that has been growing in my mind for some time and perhaps some of you can provide some examples . When we speak of the autistic kids as little canaries- many of whom have saved the lives of their younger siblings, I would also like for everyone to think about this- Those little canaries could also save the lives of their parents and grandparents. How is that? Well, if we look at the reality that we are getting more and more proof that the autistic kids, genetically are somewhat deficient in excreting or transporting metals in their bodies, then we could look a little bit further at where those genes came from. Lets say, maybe it is mom or grand dad who has those same genes, the same difficulties transporting metals- Then we need to take a step back and say, "Wait a minute, Mom ! Grand Dad! Are you eating fish? Are you consuming some favorite food with high fructose corn syrup? Do you still have mercury laden amalgams in your teeth? Are you still taking flu vaccines? and when you take those trips abroad, do you check out the aluminium and mercury in those vaccines your doctor recommends? Are you beginning to get a tremor of the hand? Are you going to be struck down by Alzheimhers disease, Parkinsons, MS or a whole variety of other ailments? Mercury toxicity isnt only for the little babies; It is an equal opportunity poison, and if you are, unluckily, the one with the with the bad metal transport genes- you could, perhaps save yourself from heartbreaking disorders by listening to the song of your little yellow canary.
I began thinking along these lines a few years back, when I chanced to run into one of the old autism moms from my nursery school. I noticed immediately that this tall, beautiful mom did not look ok. She immediately explained to me the reason. Her autistic son was now a teen and his loving grandfather often helped him. But grandfather had been operated on for a heart problem ; the surgery went awry- took more time than expected, and post-op grandfathers body had been taken over by a yeast infection and he passed away after a month of more surgeries and suffering. The mom was especially devastated because the operation had been an elective one and she and her husband had researched and urged and arranged the operation. They felt responsible. I kept mulling this situation over. Wasnt it a bit odd that candida, which can be a problem for anyone with metals in the body, and which is often a problem for autistic kids, should have taken grandfather away? Say, Im dim, but it took me some time to see the possible link : Grandfather , quite possibly had the same genes as his autistic grandson. He had difficulty transporting metals. Before the operation he may have been given some vaccines with mercury (very common in India), and during the long operation he may have picked up aluminium from the IV - and other medical products used in his treatment. If he had poor metal transport, he may have been high in body burden of metals even before the surgery. Today, I would say to parents of autistic kids- " Think of yourselves ; think of the grandparents- There may be one or more persons there who need to be careful about metal exposure in their lives and extra careful about any medical or dental procedure.

Cherry Sperlin Misra

Donna K and Julie, Thankyou so much for your eloquent and moving words. Keep talking this way- You are the wind at our back as we try in our often feeble way to fight this disaster.
My daughters and grandchildren love to poke fun at their grandma who is always talking about mercury. That's fine with me. One fine day when the truth is out, they will say, "Oh my God, She was right"- and then THEY will get bitten by the mercury bug. Im sure its contagious !
and on a bitter note, I am sorry to say that I have one advice to leave to my children and grandchildren, which is:
Never trust a doctor ; Never trust the public health people; Never trust a medical association; Never trust the WHO- Always verify for yourself. ( and about the Pharmaceutical companies, the less said the better) I hope that this simple advice will help my dear ones to navigate the world more successfully than those of us who trusted, and got burned.

Donna K

Because I had triplets, I could only take at most two babies at a time with me to the peds office for their vaccines. The third baby I left behind with Nana and Papa awaiting the next appt. My Dad, being concerned with the frequency with which our babies were being vaccinated expressed his reservations the day of their 4-month vacs. He said, "it just doesn't seem right to give such little babies so many shots and so often. Are you sure this is safe; do you really need to do this?" I answered, "of course, Dad, the doctor says this needs to be done and doctors know what they are doing."

Besides, if one of those very rare side effects occurred, I could trust that my doctor would know how to identify it and then know how to fix it.

I should have listened to my Dad. I sooo should have heeded my Dad's warning. My parents have that kind knowledge that is wisdom borne of life experience and self-evident truths. My childrens' doctor didn't know what she was doing. Nope, not a clue. And then wasn't honest about what happened to my daughter either. I can see that now, hindsight being 20/20 and all. How I wish I had taken heed of my Dad's protective intuition. Didn't I feel that same uneasiness about the vaccine schedule. Yes, but I pushed aside those maternal instincts because we have been conditioned to do that in order to believe that the doctor knows best because their knowledge is based on scientific truths. Besides, doctors are humanitarians for God's sake. They would never expose a baby to an unnecessary or increased risk of harm. Scientific truth in medicine I now understand means whatever truth is convenient, keeps the profits rolling in for pharmaceutical corporations, and above all else protects the reputations of those in the medical profession. Well we learned the hard way that doctors have no problem denying the truth. It's as easy as turning their backs on human suffering - suffering that they inflicted. I know Alex and his family have learned this hard lesson too.

Fortunately, I have a very supportive family who has been there every exhausting and painful step of this life journey. We have all learned a very important lesson about trust and how not to disregard our instincts or what truths we know to be self-evident. Our children's suffering will not be in vain. We will pass this life lesson learned on to our extended family members, friends, church communities, neighbors, teachers, aides, therapists, expectant mothers, strangers in waiting rooms, on-line connections, grocery store queues, Congressional hearings, etc., and succeeding generations.

Jeannette Bishop

Thank you very much for sharing. Your parents' supportive efforts and insights also support me a little today.

Living the Dream

It breaks my heart - another blow that autism strikes on families. My parents have two grandchildren with autism including our daughter and have no doubt felt their own pain at witnessing their beloved grandchildren's monumental struggle. And yet they have never even hinted about it. Although we live in different cities, they have been there through every intervention, driven the 250 miles between us to watch our other kids when we went across the country for treatment (a few times), agonized over food infractions when we are visiting and so much much more. Most importantly for me they listen and believe in us each time we try some new therapy, school, supplement, diet, etc ... and there have been many. Their loving support has been constant and enduring - they are running the marathon with us and our kids. Many thanks to them and all the grandparents on this journey.

Kathy

This post really got me. It's hard when we are so overwhelmed to think of others. I'm at the point now where I can look back and wish I had done some things differently but when you are in autopilot in the fight for your childn's life ... it is hard to think about anything else! Beautiful post ...

Michelle O'Neil

Like all stressors, autism can either make relationships closer, or pull them apart. I wish all autism families had the beautiful support you've received from your parents and in-laws. They sound like amazing people.

Maurine Meleck

The hardest thing about being a grandparent raising a child with autism is, of course, being a grandparent raising a child with autism. Kudos to you and your parents and in-laws. Thanks for this post.
maurine

Jim Thompson

Your mom’s perspective, in her words, tells us what no scientific study on autism can. This woman’s thoughtful, caring, and intelligent insights surpass all the hypotheses, graphs, tables, and models. Thank you Julie.

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