Home > Topic of the Week > Grandparents and Autism Education

Grandparents and Autism Education

In recognition of National Grandparents Day, on September 11th Autism Speaks is celebrating the  grandparent connection in families affected by autism. During the month of September, we are asking grandparents to share your experiences, so that other grandparents across the country can benefit from your knowledge and the road you have traveled.

How did you educate yourself about autism? Did you find any books particularly helpful? How about websites? A community group or agency? What can you recommend to other grandparents to help them get up-to-date and be well informed?

  1. Angeka
    September 19, 2011 at 9:17 am

    It took a while for my parents to completely understand but they were always accepting of him and holds unconditional love for my lil man even during the melt downs. My husbands father gets it and accepts the fact it is what it is. My mother in law on the other hand who lives with US doesn’t get it at all. She makes abide comments and it takes every ounce of my will power just to bust her in her mouth. My son is eight and is an aspergian, and he tells it like it is. She thinks he’s being disrespectful. If she cooks dinner and its too spicy he tells her its too spicy. She gets mad. I’m torn because this is my husbands mother and she has health issues which make it very difficult for her to live alone. As a nurse, I feel obligated, but as a mother I’m ready to throw her out the door. He doesn’t even converse with her that much anymore. She acts like he’s stupid and doesn’t pick up on the nasty comments. Sorry but his IQ is way higher than hers and even though he has his social “quirks” he has more compassion than she will ever have. And she calls herself a Christian. Yeah whatever.

    • September 19, 2011 at 11:26 am

      Angeka :
      It took a while for my parents to completely understand but they were always accepting of him and holds unconditional love for my lil man even during the melt downs. My husbands father gets it and accepts the fact it is what it is. My mother in law on the other hand who lives with US doesn’t get it at all. She makes abide comments and it takes every ounce of my will power just to bust her in her mouth. My son is eight and is an aspergian, and he tells it like it is. She thinks he’s being disrespectful. If she cooks dinner and its too spicy he tells her its too spicy. She gets mad. I’m torn because this is my husbands mother and she has health issues which make it very difficult for her to live alone. As a nurse, I feel obligated, but as a mother I’m ready to throw her out the door. He doesn’t even converse with her that much anymore. She acts like he’s stupid and doesn’t pick up on the nasty comments. Sorry but his IQ is way higher than hers and even though he has his social “quirks” he has more compassion than she will ever have. And she calls herself a Christian. Yeah whatever.

      Give her the book “Ten Things Every Child With Autism Wishes You Knew” by Ellen Notbohm! It helps

    • September 19, 2011 at 12:06 pm

      also check out Renos World presenting autism and related disabilities ti youth,describes how he feels ans how people can help,was written by Reno when he was 10it help me alot,a real eye opener for me

  2. September 19, 2011 at 9:18 am

    I have two grandchildren with autism.Did not really understand it until my grandson wrote a book,Renos World,Presenting Autism and Related disabilities To Youth.In his books he describes his disability and how it affects him.He also is now a public speaker and spreads autism awareness.He has presented to many schools in Sw Florida.He also got to go to Reno,Nevada this year to present to school bus drivers and monitors to help them understand special needs.

  3. Valerie Keller
    September 19, 2011 at 9:19 am

    When I found out that my grandson was diagnosed at 3, I was already familiar with the spectrum, since my 28 year-old son has Asperger’s syndrome. One of the most important communication skill I found helpful was to get their eye attention, speak plainly, simply and ask them to repeat it back to me. And for every time thereafter, doing the same thing. Now my grandson is verbal, so this was somewhat easy. My grandson is also gluten and dairy allergic. So this is very tricky when trying to introduce new foods. I “hide” veggies on his pizza (wheat free crust) and cut his food so he is able to eat it easily with fork. My daughter and I decided to introduce (slowly) other foods that he is able to eat. For instance, rice, gluten free chicken nuggets, rice chex (GF) baked potatoes with real bacon on it. He loves fruit so that is not a problem. In all situations where we think he is going to react, I give him a choice….example: Do you want to watch Thomas on the computer? Then “no whining or carrying on, you may not do both”. It seems to work. Now I say the same thing every morning, but I find it has lessened. He also goes to a great school, which has done wonders for him!!*~*

  4. G.M.
    September 19, 2011 at 9:33 am

    I have a grandchild I have heard has Autism, have not seen her for a while, but I am learning more and more about it, when she was small I had noticed a few signs that now I believe it was the Autism.

  5. Brenda Kaiser
    September 19, 2011 at 9:41 am

    When my grandson was finally diagnosed with autism, I did what I always do when confronted with something I don’t have enough information on. I read, I research online and I scour my community for information on the topic. I found several books, many blogsites and friends on Facebook who came out to me telling me about their family members who were under the spectrum. Many of them never spoke of it before and I wasn’t aware of their situation. I discovered our family was far from alone and there was a whole world-wide community to learn from.

    My first trip to my favorite book store yielded surprising information from a clerk I was very familiar with and whose grandson(s) both had autism. I had no idea until I came to the counter with 3 or 4 books on autism. She looked at the stack and asked me who I knew with autism. I was a little taken aback until she said “Both of my grandsons have autism, one is profound and the other has Asperger’s.” I found my first comrade! I told her my 3 year old grandson was just diagnosed. She said that before I get immersed in clinical information to read “Ten Things Every Child With Autism Wishes You Knew” by Ellen Notbohm. It was the most informative book I have read. It gives you a perspective on the world as viewed from the child with autism and it will give you pause in thinking about how you, your family and others treat the person with autism. It was the best start in learning about what steps to take first and what you will encounter. I think every pediatrician, therapist and teacher should have this book close at hand.

    My background consists of 25 years teaching preschool and owning and operating a center. I am quite used to helping parents get help with their children and have been doling out advice and research for them throughout my career. Then out of the blue, I was doing it for my own family and what I found out there was not what I had thought. Getting a diagnosis was not easy, the school district’s Early Intervention Program was not a lifeline like I thought it would be and the cost to the family for services for their child is monumental. It has been an eye-opening experience for me and my family. It has moved me to retire and sell my center and focus on helping my daughter and her family get settled with my grandson’s needs and education. I am currently embarking on a new career in special education. I am taking a course to be a “special needs life quality coach” which will help families get the organization they need to deal with their child through their lifespan. I am very excited about this new career and hope to be able to help families to avoid what we had to go through to get help and education for my grandson.

    Grandparents – get involved. Not only does your grandchild need you, but so does your child!!

  6. September 19, 2011 at 9:50 am

    As a Grandmother wit a grandchild with Autism(Asperger’s Syndrome),I feel like a student learning something new every single day.Observing and listening to him everyday is an awesome experience.He makes me laugh,feel young.His inquisitive mind is,never stops.He learns so much on his own.He is an expert with the computer.He plays Piano,Ice Skates.bikes and loves to dance.
    I enjoy my time with him.I thank God everyday for putting him in my life.We take so much for granted in life and sometimes do not realize how difficult it is for some families to go through the experience of dealing with Autism.The most difficult time is explaining to him that people sometimes do not mean to be cruel,they just lack the knowledge and understanding of Autism.I thank God for his Blessings when I see other children who suffer with Autism that is more severe.
    My grandson listens and follows direction well.He is very mature and I LOVE HIM very much.

  7. Oma
    September 19, 2011 at 9:53 am

    When I first found out my grandson might have Autism, his speech therapist suggested I watch the movie about Temple Grandin, and read some of her books. It gave me tremendous insight and helped me understand so much of what I had noticed in my grandson. I then started reading and subscribing to different blogs, including this one, and found more books on the subject. One book that touched me deeply was “There’s Boy In There”. I’ve been reading and studying ever since. It’s a never ending and fascinating learning process, as every child/person with Autism is unique. I am so grateful for all that is available now to help us understand and care. Thank you for your excellent website and services, too.

    • Brenda Kaiser
      September 19, 2011 at 11:22 am

      The books by Temple Grandin are fabulous! They inspired me and motivated me to see past the present day problems which bog us down and look toward the possibilities and realize my grandson has a “specialized brain” not a defective one. Now we just have to find his specialty!!

  8. September 19, 2011 at 10:03 am

    i am raising my 4 year old autistic grandson on my own. are there other grandparents on this doing this as wel?

    • September 19, 2011 at 10:49 am

      I am also raising my Grandson on my own and have since he was 2. He is now 6 and the learning process is hard and very trying. He is now in every conceivable therapy that we can fit into a week as well as in school. This is financially and emotionally draining without assistance from family.

    • Pat Duncan
      September 19, 2011 at 10:51 am

      I also am raising my 5 yr old grandson but not alone..He is mildly Autistic and everyday is a challenge for us…I have the help of my 2 daughters (not mom) without them some days I wouldn’t know what to do…Hang in there it’s a challenge that God has blessed you with because he knew this baby needed someone strong & loving to help him through life.
      God Bless you for taking care of him and being there for him!!

    • Debbie
      October 9, 2011 at 10:40 am

      My husband & I have adopted our autistic grandson, who is now 8 yrs. old. There are A LOT of us out there. It is hard, time-consuming, and the stress is very detrimental to our marriage.

  9. Pat Duncan
    September 19, 2011 at 10:44 am

    My grandson who will be 5 in a couple of weeks is mildly Autistic..Some people just don’t get it..They look at him like what a brat or they look at me like can’t you control your kid when he is having a behavior in the store because he can’t have what he wants.My grandson also has Legg Calve Perthes Disease and has had 3 surgery’s so far and is due for a 4th in Dec..he gets very frustrated at things especially when we can’t figure out what he is trying to tell us (he has speech issues as well)…he takes Special Education in school and struggles every single day in school,on the playground,on the school bus and at home.
    He has a “BEHAVIOR BOX” and it has treats and juice boxes in it and he knows if he’s good on the bus & at school when he gets home he gets a treat and so far this is working,but on days if he’s bad there’s NO treats and he becomes upset but understands that he will not be rewarded for being bad.
    He is a very loving little boy and he’s my rock & Inspiration <3
    I wish people were more educated about Autism and realized how lucky they are to have a healthy child and realize these kids are the most loving adorable children God could give us..

  10. Rita Kellogg
    September 19, 2011 at 12:18 pm

    My story is fairly interesting as I am a Grandparent and I am autistic……makes for neat relationships with grandchildren. I am more on the level of my 7 yr.old grandson, than my peers of around 65 yrs.

    • September 19, 2011 at 4:29 pm

      You need to keep in touch with us!

      • Rita Kellogg
        September 20, 2011 at 10:05 am

        I will do that Brenda….also, feel free to ask me anything you may be curious about, or may be of help to you or child. 8- )

  11. Jean Alldritt
    September 19, 2011 at 3:07 pm

    My parents were very supportive and understanding once they wrapped thier heads around it. We had a lot going on at the time and everyone was in denial but me. My husbands family never accepted it and and even went so far as to insinuate I was a horrible mother for talking about it. It should be a SECRET. The people I shared this with I thought were friends and family.. sound familiar??? Either way we are so happy we know and have my folks to support us in everyway. My son is wonderful and deserves to be understood. Anyone who is missing out on that opportuinity does not deserve to know him or me for that matter. He is my genetics :-)

  12. Debra
    September 19, 2011 at 7:42 pm

    I have a four year old grandson with PDD-NOS and it is a struggle everyday for his mother. The public school has been great with the speech therapy but the occupational therapy is a little restrictive due to funding, so she drives him two days a week to occupational therapy. I love my grandson with all my heart and I’m sorry if people see him as a child that doesn’t behave or a brat, but until they are inside someone else’s shoes they shouldn’t judge. I believe that god gives you these gifts no matter what.

  13. Rita Kellogg
    September 20, 2011 at 10:10 am

    Looked back and saw that you are a fan of Temple Grandin’s……we are very similar as far as symptoms had been, but raised very differently. Like Temple, I would be called, “high functioning”.

    • September 22, 2011 at 7:38 am

      As I watch my daughter and son-in-law struggle through this with Jacob, I came to realize we were all approaching it as it affected US and not seeing it through Jacob’s eyes. We were seeing his autism as a defect and he was the poor thing who had it. We treated him like he was glass, didn’t do much in the way of discipline and planned everything around him so as not to upset him. Temple’s books let us know that we were treating him like he had an illness and we were not helping him learn and progress like a typical kid. He is now in a great ABA program and is doing very well and guess what? They treat him like a typical kid with goals to achieve and boundaries to observe and he responds quite well to it! It’s a little harder in our homes because we have past behavior to overcome and we’re working on new routines and higher expectations for Jacob, who can be a little resistant (like any 4 year old!)

      We’re looking forward to a kindergarten start around age 6 or sooner depending on this year’s progress. I look forward to your input and will definitely be asking for it! Have a great day!!

  14. Rita Kellogg
    September 22, 2011 at 2:49 pm

    I am glad that things are progressing so well with him. When I was young there were no guidelines to follow and unfortunately most people had never even heard of autism. My actions and reactions were considered, “willful disobedience”, and were treated as such by my exceptionally violent mom. A hard back-hand across the face was the general result of any misbehavior. So I simply tried my best to comply to avoid this. I’ve always been very good at music, art, and oddly enough, poetry. However, Sometimes I have to ask about simple comments or statements because I haven’t understood what folks are saying. Same goes for the written words. I can give a dictionary definition of most words, but fail to understand them at times when they are included in a sentence or paragraph. Heightened sensory perception makes gatherings difficult so I wear etymotic earplugs, and clip-ons for the noise and lights. The sensory problems are helped greatly through small doses of medication. But, be very careful with meds, as in small doses they are beneficial for some, but given in what may be a therapeutic for mental illness’s will be far too much for autistic folks. I am blessed to have a super psychiatrist who allowed me to experiment with dosages, etc. She has been a rock to me. Sounds like you’re on the right track with the, “lil man”, and most definitely continue to keep me up to date on his progress, and know that if you might need a little help with anything, holler at me. I also noticed that sometimes I will see a word completely different than what it actually says, mistaking it for a similar word. Well, nuff said. 8 )

  15. christine
    September 23, 2011 at 11:27 pm

    i am a grandmother of a 2 yr old boy who was diagnosed with severe autism. i agree with everyone no one understands what this is like unless they live it, like i do everyday. my daughter and grandson live with me and when you go to stores or restaraunts they look at you when they are screaming or kicking, they dont understand whats happening, i was thinking of making up some cards to hand out to people when this happens saying im not bad i have autism. we are on a waiting list that is going to take up to a year to start intense treatment. we cannot afford this alone. these children are smart and are a blessing, i have never loved and adored anyone like i do my grandson. im so glad there are sites like this where other people are going through this to. i do have a question if anyone can help. my grandson barely eats he is extremely picky somedays barely eating at all, if anyone has a suggestion i would really appreciate any feedback.

  16. Rita Kellogg
    September 24, 2011 at 6:11 pm

    Hi Christine…..I’m not a nutritionist so I can only speak from my own experience as an autistic person. When growing up I was simply given a choice as to what I wanted to eat. Many foods gagged me because of texture more than taste. I can recall as a toddler getting pieces of bread and mashing them into dough then eating them slowly because I liked the feel of it in my mouth. I went for a short while eating nothing but the mashed bread slices. This kind of eating habit went from one food to another through the years, but I later saw what other kids were eating, and sometimes tried different foods. Some I rejected, some I liked. Please don’t make mealtimes be associated with cajoling, etc. Just give him a choice and keep mealtimes quiet and peaceful as possible. I am now 65 and love most foods, and have most of my adult life. As far as restaurants are concerned, he is likely overwhelmed with the noise, lights and many people. I have to avoid them at times even with earplugs and clip-ons. If people bother you with their comments and stares, help them. You might say to them something like this…..”I understand, autism is tough on him too. We all need to be patient and understanding.” I would say Christine to let him be picky and don’t be particularly worried…..he will sense your anxieties and react accordingly. We are too tuned into our environments and avoid all the brain chaos by just withdrawing. 8 )

    • Christine
      September 26, 2011 at 10:35 pm

      Thank you so much Rita, everything you said is my grandson. I will take your suggestions, I think I just get worried he is not eating enough. My daughter refuses to take the bottle away cold turkey, but he really is dependant on it and I feel its time. I notice he went through a phase of yellow foods, then he would eat just a few things and we would give him that and then he wouldnt touch those anymore. He likes Mcdonalds not the food but just going in it is really strange lol he sees the big yellow M and gets so excited. You give me great hope that things can and will get better for him. I have such high hopes for him to have a great meaningful life. My heart melts when i see him and watch the things he does, hes really a smart little boy. Once again thank you so much.

  17. Rita Kellogg
    September 27, 2011 at 1:45 pm

    Us auties always grow up ……8 )……try not to get too upset over things that in the “big picture”, won’t be such a big deal later on. He’s probably comforting himself with the bottle. I’ve always rocked myself, and do so even now. You might try distracting him with something yellow…..banana? It would help to find a healthy treat as a reward for even tiny accomplishments…..again for now, something yellow, or toy. Caution though, don’t always let food be a reward…okay? Lots of yellow things in this world. He’s apparently had some really good experience connected with color yellow….use that as a tool for now. You’re a cool granny Christine. He will find his niche somewhere, sometime. Try to treat him as you would any 2 year old as much as possible. 8 ))) and ((hugzzz))

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