Grandparents and Autism. One Daughter's Story.
Managing Editor's Note: We probably all have at least one Grandparent/autism story. I hope you'll share yours in our comment section. Some grandparents are a source of strength, comfort and and even financial assistance. Others are a brickwall of lack of understanding. Thanks to Sally, who is a Generation Rescue Rescue Angel for sharing her story with me earlier this summer.
By Sally Miller
My father passed away 7 months ago, suddenly, and my mother followed him two days ago, just as suddenly. I am left with a hole in my heart so large, but also a legacy of help and hope.
I can not possibly write what an inspiriation these two were to me, but I can give you snippets of two grandparents who did not shy away from the fight for recovery and truth in autism. When my son was dx 8 years ago, they immediately understood the connection to vaccines. They had watched the demise right along side of me. They simply said, "What can we do to help?"
More than anything, they prayed without ceasing for my son and our family.
My family moved from NC to FL three years ago for my husband's job. My parents did not hesitate to leave their home of 20 years, their church, their friends, their life, to move to FL. They wanted to be with us and help us above anything else.
I often wonder if my dad would have ended up with ASD had he been born and vaccinated in the 1990's. It's not because of his personality, but his brilliance. I am convinced that ASD and vaccine injury are somehow linked to genius (mitochondria?). My father was a methodical engineer and then computer guru. I remember when we were trying to decide if we should purchase an HBOT chamber for my son. In classic "Dad", we sat at their kitchen table and wrote down the pros and cons. Turned out, the only con was the price, so Dad simply said, "We'll pay for it". So many times, for so many treatments, they did that - knowing there was no guarantee of success or even improvement.
I don't think I ever heard my dad raise his voice. He was literally the most calm and patient man I have ever met. But, when we were going through a very difficult stage of rages, someone had suggested to me it was poor parenting. I called my dad, obviously distraught. This father, who never got upset, always stayed calm, said to me, "Sally, I'll go punch him in the face right now if you want me to." What a dad!
My mom always said that her fruit of the spirit was to be a helper - nothing could be more true. She helped everyone, but most especially, she helped me. We often joked that she was my personal assistant in recovering autism. There was not a health food store within a hundred miles that she had not visited and picked up what I needed. When I homeschooled my children, she came and picked up one or two of my kids every day, so I could concentrate on the third. Just two days before she passed away, she bought a keyboard and investigated piano lessons for my ASD son because he had mentioned that he would like to learn to play the piano. I never asked her to do that, she just did it, like so many other things.
I can't begin to list all the little (and big) things my mother did to make my life easier, to stand with me in recovering my son. But I will tell you that the ASD community has lost a real warrior. I know there are babies out there saved from autism because my mom told everyone she knew to research vaccines, to insist on thimerosal free, to spread them out.
I was able to make it to the hospital just before my dad passed away. Right at the end, I was able to tell him, "You're my hero, Dad - you're my hero". Unfortunately, when my mom called 911 for herself 7 months later, the paramedics did not make it in time. But I was told they found her on her knees, and I know she was praying for us, praying for peace, praying for recovery.
So here's to you, Mom and Dad. I'll never forget the lessons you taught me - that giving is more important than receiving, that helping others is why we are here. You will live in my heart forever, still helping me in the fight.
Sally Miller is a FL Rescue Angel - any help or compassion she has shown in this capacity is directly related to the lessons she learned from her parents, Tom and Carol Ferris.
What a great encouragement it is to read this article and all these notes showing what a positive impact grandparents can have on all their grandkids, and particularly those with any kind of special needs. Thank you all for sharing your hearts with us so that we may be encouraged and also learn new ideas for helping and ministering to our own grandkids. :)
Posted by: Kaye - SandwichINK | April 22, 2009 at 02:57 PM
Sally,
I wanted to tell you that this piece was amazing. I cried through it of course, and reading each of the responses as well.
My parents live with me, and I would be lost without them. They are the biggest support that we have- I count on them for so many things. I don't think we could do it without them.
My heart goes out to you.
And thank you for the important reminder to say "Thank you Mom & Dad!! Because sometimes in all of the craziness, I forget. We love you! XXOO"
-michele
Posted by: michele i. | September 18, 2008 at 01:09 PM
I want to be like your parents when my children start raising their families.
One day some years ago, my father sprang up wanting to beat and bully my very-DCD (spectrum, Aspergerish) son when he fell over somebody sitting in a chair at the beach; I had to block him physically from doing so. He said in front of this child, when he was 3, "I don't like 3 year olds." My mother can't be bothered to talk to me. My beautiful very-successful sister looks down on me and the other two sisters follow her lead. I've been very alone in raising my children. I'm probably "spectrum" myself - inflammatory allergies, heightened neurology with problematic sensory processing, etc. It's been a struggle - and struggles and defective people aren't allowed in my family or my husband's.
But thanks for sharing your story, and if I do nothing else, I want to be there for my kids when the going gets rough. At least I'll make sure they know I care and love them.
I hope those of you who do have family, pass on some of the mercy and grace and assistance to those like me who don't have family, and that you are understanding if we don't quite give back as much. We didn't know it would be so hard, and by the time we realized it, the kids were already here. I could cry, some, reading here just what I'm missing. But I can't cry. I have to just do and keep going.
Posted by: Sheila | August 24, 2008 at 02:00 PM
From a Grandmother to her autistic grandson
Son of my son,
Heart of my heart,
Light of my light.
You brought me into a world that I had never known.
You taught me things that I never knew.
You brought me to a place that I could never get to on my own.
Teaching me, teaching you.
You stand strong,
In all your glory,
A child of the universe, in purest form,
No less than the birds, no less than the trees.
Teaching me, teaching you
Through your eyes
Life is a gift,
Love is a given.
Spirit is within reach
Teaching me, teaching you
You’re the echo in my mind.
You’re the silence in my space.
You’re simply put, god’s grace.
Teaching me, teaching you.
Posted by: Eliuth | August 20, 2008 at 01:38 AM
Sally,
I am writing through my tears and first want to join you in the celebration of your parent's homecoming and know such wonderful people will be greatly missed in this world. I am the grandmother and fosterparent of my 7 yr old grandson. Parents were in denial and angry when I bought the topic up. Well about a year ago, Anthonie was removed from his mother due to drugs and neglect. He was at 50% school attendance with no other therapies, his behavior was aggressive and out of control, no eye contact etc. I have been studying, participating, raising monies, changing Anthonie's diet, trying various biomedical therapies etc. I have literally gone through savings etc due to his fulltime care and biomedical expenses. But today Anthonie is a different child able to go out in public. Shares, makes eye contact, doing well in school and the list goes on. I know I can help him recover if the Lord deems so. Meanwhile I have been fighting to get the CPS here in Sacramento to understand that there is a need to reevaluate the handling of reunification cases when a child is autistic. I am exhausted everyday and I miss my other 9 grandchildren but I would never stop speaking for my baby until he can speak for himself. It was good to know that there are so many other grandparents doing the same and so it gives me hope and inspiration. I am now ready to walk into the courtroom tomorrow and fight the reunification process since basically CPS is attempting to return my grandson to his mother who completed some parenting classes, minimizes Anthonie's therapy needs and who is still far from ready to care for Anthonie. CPS is proposing returning Anthonie with no meetings of the minds as to his hobbies, new ways, activities, therapies etc. and so today I was feeling a little low and concerned and your letter reminded me of how supportive my family has been although they are not well off - they give all they can and for that I thank GOD! God Bless You! Your parents are so overjoyed this day that YOU really understand how much they loved YOU!!- their baby!
Posted by: Eliuth | August 20, 2008 at 01:18 AM
I also have been blessed with a wonderful family network of love and help... both my mother and mother-in-law (whom I call MOM, she has earned it) both are a true blessing and would not have done much without their help, support and unconditional love!!!
Elvira & Linda...They both are true angels!!! LOVE THEM SOOO MUCH!!! And they have a special connection to my children... God bless their socks off!!!
Love, Gabby. :0)http://stemcellforautism.blogspot.com/
Posted by: Gabriela DeVelbiss | August 20, 2008 at 01:01 AM
Sally, I'm very sorry for your loss. I'm so happy to hear of the legacy of support and love they leave behind.
My mom died before we began the biomed interventions for my son. She died shortly after his "official" diagnosis and reminded us that he was the same boy he was before we got that report. She died 10 days before my son said his first words (again) at age 5 and a half --- and I just KNOW she had something to do with it. Because the prayer I said when she died was "Be happy and now that you understand how powerful you are - do something to help {my son}...show me the way." She did, I got the message, he started speaking. Greatest gift.
As for my mother in law - she listens, she asks questions (via phone), she sees the results...she doesn't critize or blindly reject our biomedical interventions. And she loves our kids so much. Again, another great gift.
I have so enjoyed reading everyone's posts - thank you.
Posted by: Cathy R. | August 19, 2008 at 10:49 PM
Well if we are handing out props to autism grandparents. I have 2 people I would like to mention. Maurine Meleck and Bob Moffitt. Two of the finest grandparents ever.
Sally- congrats on google news picking this up. Don't worry your Mom knows and she is very proud of you.
Andrea
Posted by: Andrea | August 19, 2008 at 03:10 PM
my parents have always been there for ben even before the diagnosis. but just recently since we have been going through the biomedical side of things, they have been my rock. my dad even went with me to the first appointment. i was a nervous wreck and my mom and dad backed me up and kept telling me i had to at least try. and i am gald i have great parents to be there for me even when i doubt myself.
jill
Posted by: jill robinson | August 19, 2008 at 02:57 PM
Hey, Sally,
Thanks so much for your beautiful tribute to your parents. You have expressed the same kind of gratitude I feel toward my own parents and in-laws.
I am so blessed to have parents and in-laws who are supportive in every sense of the word. Both my parents and in-laws have generously contributed financial support without even having to be asked. My in-laws have become politically active in support of safer vaccination programs. My parents, who live nearby, have helped on almost a weekly basis -- often more often -- with things like babysitting and transportation for two kids who need to be in different places at the same time. And my mother has given endlessly of her time to help us in any way that was needed, whether it was buying school supplies or babysitting so I could take a nap after being up all night with my son. She even bakes GFCF bread for us on a regular basis! I am often told by others how blessed I am and I couldn't agree more. And we have received all this without even having to ask.
To all grandparents who are making such a difference in your children's and grandchildren's lives -- please know that in all the busy-ness we may not say it enough --but thank you from the bottom of our hearts. You are so very important in this battle for the future of our children.
Posted by: Carla Jenkins | August 19, 2008 at 01:49 PM
Thank you everyone for the wonderful comments. They have helped ease the hurt a little bit. Kim wrote and told me this story was picked up by google news, and I just can't believe I can't tell my mom. She would have SO loved that!
I don't think any discussion of grandparents is complete without mentioning Ann Brasher. She has been an incredible advocate for our community. Other than my own dear parents, she is one who has helped me and many many others in a huge way.
Thanks again, everyone. It's so wonderful to have a community that I can lean on...
Sally
Posted by: Sally Miller | August 19, 2008 at 10:46 AM
Thank you for your post. It reminds me that I should take the time to make a real tribute to my parents.
On the day my son was diagnosed at Stanford, it was my mom who met me at the hospital to watch Ethan while I received the devastating news. After an exhaustive morning of testing, she bought me a Caesar salad and a $90 pair of blue pants from Macy's. She then kept Ethan while I went back to learn their verdict.
Other grandparents and well meaning friends questioned the diagnosis, but my mom never doubted my belief it was true. She listened patiently and sent checks to cover alkaline water filters, vitamin supplements, social skills groups and weighted vests. Most importantly, she reminded me that coming to peace with my child was a spiritual gift. Every time I called her in tears she reminded me of this path. Somehow, this made life more tolerable, each and every time.
When I couldn't bare to send my son to the local public school with 120 kids per grade, she sent checks to cover a one-to-one aide at a local private school.
I would call and complain of what he could not do, and she would insist I tell her about what he can do. And then she would take him for the day or the night and rave about what a unique and wonderful being he is. And through someone else's eyes I could see it too.
Posted by: Cecily | August 19, 2008 at 12:45 AM
You are so blessed Sally.
We have parents who have taken tearful phone calls and known our struggle but virtually ignored us through the Autism journey.
We would have loved some moral support.
Grandparents that engage are worth more than gold!
Posted by: name withheld | August 18, 2008 at 10:49 PM
What a beautiful tribute. So sorry for your losses.
Posted by: Michelle O'Neil | August 18, 2008 at 10:13 PM
Sally,
My parents were gone before my son was even born. I would like to think, especially where my father is concerned that they too would have gone to the mat for my boy. I envision them as my children's guardian angels protecting, healing and praying for our family. It's working too. Every day my son gets a little better and I say a prayer of thanks to God and to my folks for whispering in the Lords ear to protect and help our little family.
Parents can do so much for us, even if they are no longer of this earthly world. May they have the peace they have earned.
DEB
Posted by: Deborah | August 18, 2008 at 09:28 PM
All of the above is wonderful and so important.
I'd just like to add this name: Bob Krinsky
He was a great autism grandpa who started GASAK, an organization for autism grandparents on Long Island. My in-laws were charter members. Bob's wife Thelma was so important too in runing GASAK.
We all miss Bob. And I send love to Thelma!
Posted by: Barbara Fischkin | August 18, 2008 at 08:07 PM
What a wondeful tribute! I know I never would have made it this far on our autism journey without the incredible support of my parents. My parents rearranged their retirement plans so that they could be close by to help our family. Both of my parents have been awesome. My dad was right on board about the vaccines and "cleaning the gut". He is a typical 1960's dad (I don't think he ever changed a diaper), but he is so sweet and patient and involved with my little boy, it brings a tear to me eye. Our little guy had a tough time with my mom for a period of time. My mom and I have very similar voices and we think it was probably auditory processing issues. Now, as he is recovering, he is grandmom's #1 fan. He loves sleep overs and can't wait to visit! Everyday I thank God for the incredible blessing of loving and giving parents. As for the in-laws who just don't get it -- we don't see them anymore. We refuse to have our limited energy drained by negative people (whether they be family, friends, coworkers, etc). And I have to comment on the "familial" engineering ties! Many therapists have commented on the fact that my husband and I are both engineers. And no, my husband and I are not mini-Bill Gates Aspies, but I have wondered what we would be like if we got the full vaccination schedule that our children did.
Posted by: PhillyMom | August 18, 2008 at 06:07 PM
Sally, This is such a beautiful tribute to your parents. They were amazing and you ARE your parents child and I know how you give your time to help others. Those you haven't even met. You've helped me navigate the murky waters of autism and encourage me to keep trying.
Blessings, Sharon
Posted by: Sharon | August 18, 2008 at 01:58 PM
Sally,
Thank you for sharing your family with us. My 2 ASD kids would not be where they are today had we not had the financial and emotional support of their grandparents (all 4 of them). We will be giving them special thank yous on grandparents day!
Posted by: Jennifer Morgan-Byrd | August 18, 2008 at 12:14 PM
Thank you for sharing this with all of us.
Your parents are a great example for all of us. It seems they took their purpose on earth very seriously. This is how every family should be. Some of us don't get that kind of support, which made it really uplifting to read your story. I am so sorry for your loss.
Posted by: Karen Fuller Yuba City | August 18, 2008 at 12:06 PM
Sally, what a beautiful tribute to your parents. Thank you so much for sharing it with us.
My parents are very involved as well and I can't tell them enough how much they mean to us. My mom passes along information to all of her friends that have grandbabies on the way. She has called me multiple times to tell me that they are waiting to vax because of what she has shared with them. She is saving those babies!
My parents take our 2 boys (1 w/ ASD, 1 not affected) for a week each summer so we can have a break. My mom deals with the poop issues and never complains once. This summer my son soiled himself multiple times per day while there and when I tried to apologize that she had to clean up that mess she wouldn't hear it. She simply said "This is my grandson, whom I love dearly, and I will do anything to help him. Including cleaning him up when he needs it. He can't help the damage to his GI tract that those vaccines did to him. We will all get through this together." I had to choke back tears of gratitude.
My dad has always been a very strict man. I thought that he wouldn't understand the behavioral issues that come with autism but he shows more compassion to my son then anyone I know. He 'gets' it and I'm so proud to call him my father.
Thanks again, Sally, for your beautiful post.
Posted by: Kecia | August 18, 2008 at 11:51 AM
Sally:
Your letter gives proof to the huge impact others can make just by doing what may seem as little things.
Those are: Listening, loving, supporting, and reaching out.
We never know just what an impact we are making just by doing these things.
Your parents were two pebbles that were tossed into a lake, and the ripples that they made - their lives of service to others - continue even today, effecting and touching those they have left behind...for better things.
I do not believe there is autism in heaven, by the way. So to those parents and loved ones who pray for healing...like your sweet mama on her knees did...rest assured, one day, that healing WILL come.
Posted by: Kelly Langston | August 18, 2008 at 11:47 AM
I do not know what happened to my prior post, but I may have had too many tears in my eyes after reading this to type in the right letter/number combo. Here it is again.
As someone who has also lost both of her precious parents recently, in 2005 and 2006, must say your article made me absolutely bawl. My parents fell apart physically during the time I should have recognized that my twins were not progressing with language as they should have been.
My mother had a heart attack in 2004, and my father, with Parkinson's, needed immediate attention. I went from hospital to rehab center to hospital to nursing home, etc. for a year until my mother died. My father followed her less than a year later.
Before all that occurred, however, I remember a day when my double stroller broke and I could not visit my parents with my heavy baby twins until I got a new one. The manufacturer was out of the one I needed replaced, and I was told it could take a month or more for them to ship me a new one, free of charge. The day I told my mother this, she went to a store, cane in hand, had the stroller assembled, and had them place it in her trunk. I remember her exact words, "I'm not waiting a month to see my grandchildren because of a broken stroller!" My mother was an amazing woman who really took her job as a mother seriously.
Years ago my father tried to encourage me to get politically active as he (a committeman) had been so disappointed at Democratic conventions and fundraisers that there were never any young people present. He worried about our future generations due to the blatant lack of involvement of our young. I see now what this general lack of interest in politics, almost an apathy, really, has led to: the current disatrous situation at the CDC and FDA, and the empowerment of the pharmaceutical industry. My father was a wise man. When he was ill, I told him about how his grandchildren both had severe developmental delays. As he sat in a wheelchair, quite demented, he responded, "Don't worry, they will be okay." Now that he is gone, I hang onto those words. I must warn you, Sally, the pain of losing one's beloved parents does not diminish. I am so sorry for your loss.
Posted by: Gayle | August 18, 2008 at 11:07 AM
Sally, thank you so much for sharing your parents with us. And I am so so sorry for your loss.
I want you to know though, that by sharing who they were (are?) as people and by talking about the *soul prints* these two people left on other people's lives, you've made my (vomit filled - my oldest is in hefty detox) morning a little brighter.
It's already been said, not all (grand) parents are made of what your parents are made of. And as I was reading your post, I actually felt a tad envious (not a pretty emotion, I will fully admit to that, but heck, I am human)
My parents do try, but they ARE over 3,000 miles away. My mom does *get it* but with the distance and all, there's not much she can do. And traveling over here is not an option, as my dad has been trapped inside a deep depression for over 1.5 years now and will not go anywhere/do anything that brings him out of his (oh so small right now) comfort zone (and my mom won't come over here by herself). The other set of grandparents? Hmmph - the kindest thing they ever said about my oldest boy is: 'hmm, wonder where [insert name of oldest boy] gets all his issues. These things really don't happen in OUR side of the family' (Kim S can tell you stories about what happens to my (in?) sanity whenever they come to visit.. LOL).
Anyway, 'nuf belly aching. Sally, thanks again for sharing these two wonderful people with us. And my thoughts are with you during this difficult time.
Posted by: Petra | August 18, 2008 at 10:25 AM
"But I was told they found her on her knees, and I know she was praying for us, praying for peace, praying for recovery."
Sally, how incredibly awesome is that?
What a beautiful picture to hold in your mind for the rest of your life - your Mom's intercession for you and your family and most especially for your beautiful son.
Your parents were awesome.
Likewise, my Dad is also a retired engineer who actually moved in with us for several years (technically, *we* lived with him since it was one of *his* houses we were living in at the time) and he was able to witness first-hand the daily struggles and heartaches we faced with our son Miles.
If it wasn't for his generosity in providing us a place to live for 7 years (a 3,000 sq. ft. house on a golf course no less) while my husband transitioned out of the Army and went to school to get his *engineering degree* (anyone see a theme?) who knows where we would have landed.
Bottom Line: My Dad ROCKS!
Posted by: Kelli Ann Davis | August 18, 2008 at 10:15 AM
Barbie last week, and now Sally - I'm so appreciative of how our contributors have opened their hearts and even the deepest wounds here at A of A to share the experience of autism with our readers. It sets us apart from every other news source. We're honest and that shines through. Thank you.
I have wonderful, supportive parents. And my folks are constantly telling me how proud they are of Mark and me for how we've dealt with the girls' challenges. That matters. My father in law saw my struggles early on with two toddlers with autism - one day, he called me and said, "I'm paying for a cleaning lady for you Kim. Send me the bill." And he did. He was a gem. He died of cancer over seven years ago. I miss him terribly - even though I only had the honor of knowing him for just over a decade. I can't imagine when it's your beloved parent who dies. My Dad is 86 - ever day is a blessing. Bella adores him - runs to him with a goofy grin on her face when she sees him. Our kids know a kindred spirit when they see one. On the other hand, there are family members who remain not only clueless, but cold. That's a heartbreaker too. From this I know.
Posted by: Stagmom | August 18, 2008 at 09:28 AM
Sally- I am so sorry for the loss of your parents. My parents are VERY much like yours. Without them I would be absolutely lost. My dads an engineer as well and willing to do anything that will help us (built 2 houses, offered to build a HBOT and countless other things and my mom is the helper of all helpers. She too has gone WAY out of her way to help me and my family) Thank you for sharing this and giving me the opportunity to appreciate my parents even more.
Posted by: Holly Austin | August 18, 2008 at 08:59 AM
Sally,
My heart feels heavy for your loss. I, like you, have a mother who holds me up when I'm down. She sees what I see in my son and adores him through all his ups and downs. They are special little people who were harmed by the people who pledged to do no harm. Doctors need to wake up and read the research.
My mother tells people all the time about my son's *awakening* and it means the world to me. There was a time I just quietly began the journey of biomedical because of the response of how outrageous to think vaccines caused so much harm - I was a crazed internet mom in denial. The proof is in the recovery and you and your son are so lucky to have parents to help you so much in healing your son.
Your parents have helped more people than you'll ever know ... one less baby lost to SIDS, one more child on the road to recovery ... one life at a time. Hang in there during this difficult time.
Posted by: Kathy | August 18, 2008 at 08:56 AM
Sally, you have written a wonderful tribute to your parents. My parents are also no longer with us, but my sisters and brothers tell me everything I do simply continues their legacy of advocacy and activism.
The real miracles are my in-laws! Over the years their stance changed from absolute denial to poster-making, rallying in front of NC's General Assembly demanding mercury-free vaccines, phone calling, and letter writing top state and national representatives. They are blessedly unstoppable! And I thank God for them.
Posted by: Alison Davis | August 18, 2008 at 08:40 AM
Sally:
This is just beautiful. You, and especially your son, are so very lucky to have had these wonderful angels in your life. My thoughts are with you during this sad and difficult time.
Posted by: Barbie Hines | August 18, 2008 at 08:33 AM
Sally- My deepest sympathies on the loss of your parents.
They sounded like wonderful people.
My son has a special bond with my mother. One of his favorite things to do is to go to grandma's house. She's the only person who ever asks to spend time with him or asks to take him places. My in-laws get a big fat "F" for their involvement in his life. He is not welcome in their home and we rarely get invited over there.
Oh well- that's their problem and their loss.
Thank you for sharing your story. I know there are a lot of wonderful grandparents out there.
Posted by: Andrea | August 18, 2008 at 08:29 AM
Sally, what a beautiful story you've shared with us. Thank you.
Now, I have to go call my parents to say, "I love you and thank you for all you."
Posted by: Jeanne | August 18, 2008 at 07:15 AM
Sally, thank you. I'm sure I don't need to tell you that all grandparents are not made of what your parents were. How I wish my parents showed any interest. Your parents, though, will be role models for me and others someday, if we get to be grandparents.
Posted by: grateful | August 18, 2008 at 05:49 AM