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Posts Tagged ‘Grandparents’

The Grandparent Connection in Families Affected by Autism

September 13, 2011 56 comments

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. 

Like the parents of children with autism, grandparents can have different reactions and responses when they learn their grandchild was diagnosed with autism. What was this like for you? What helped you through this difficult time? What gave you hope for the future for your family and grandchild?

Family Services Office Hours – 09.08.11

September 9, 2011 2 comments

The Family Services Department at Autism Speaks now offers Office Hours!

Office Hours, a new resource available on the web at www.autismspeaks.org will easily connect families to a wide variety of autism-related resources, including Family Services’ Toolkits, and the Autism Speaks Resource Guide, an online national database of autism providers and resources searchable by state and zip code. Family Services’ Office Hours is designed to quickly provide access to resources that are available and free to the entire autism community.

“Having a family member with autism can easily lead to feeling isolated without knowing where to turn. In addition, most families have little free time to search for reliable information about autism, yet they may be in need of timely information. Office Hours offers a quick connection to the Autism Response Team(ART) who can assist you in getting the information you need as quickly as possible,” states Marianne Sullivan, Assistant Director of National Outreach and Resources.

The Office Hours resource is staffed by ART coordinators who are specially trained to connect families affected by autism to resources.

In addition to Office Hours, ART is available by telephone during usual business hours at 888-AUTISM 2 (888-288-4762). You can also reach ART by email at familyservices@autismspeaks.org.

Here is the transcript:

2:58
This month we are focusing on the important role grandparents play in the lives of their grandchild’s life with autism. In addition to weekly Office Hours we will focus on grandparent blogs, development of grandparent resources, and the launch of a Grandparent Support Tool Kit. We are interested in hearing from grandparents who can share their experience what it is like be involved in the lives of their grandchildren who have autism.
2:59
Comment From Jan Molesky

My grandson has autism and is also deaf. He is 10 years old and having some behavorial issues (slapping, unable to sit still) at school. I am not convinced that ABA therapy is the what we want to try. Is there some other therapy you might recommend?

3:00
Hi Jan!
3:00
You are absolutely right. If you are not seeing progress with one specific treatment it is important to look at other options and treatments where you have a better outcome.
3:01
Here is a link to different treatments – look to the column on the left! http://www.autismspeaks.org/what-autism/treatment
3:01
It is important to have data measures on treatments to know whether or not they are working
3:03
Comment From Jan Molesky

I have been heavily involved with my grandson since his birth and am his advocate. That means, I am the one his mom turns to when we need to find information, resources, funding, etc. It takes lots of time but it is one of the most rewarding experiences I have ever had. Thanks for the information. I just researched a little about the Son-Rise program last week and think that sounds like something I need to approach his mom about.

3:04
That is wonderful – good job! It is wonderful that you are advocating for your grandchild and families need all the support they can get
3:06
Comment From Jan Molesky

Is the Grandparent Support Tool Kit already available?

3:07
Not yet! It will be coming out on September 15th as part of Community Connections. You can subscribe to Community Connections here! http://www.autismspeaks.org/family-services/community-connections
3:07
Comment From christine

my son (4 1/2) just started back to school this week. he has an i.e.p. the school just informed me that the have no speech pathologist on staff. he NEEDS speech therapy and it is part of his i.e.p. what should i do?

3:08
Hi Christine! We are trying to keep with the grandparents theme, but we are more than happy to answer your question!
3:08
If speech services are a part of your son’s IEP the school district is required to contract for them
3:11
The Interactive Autism Network(IAN) conducted a survey of 2,600 grandparents of children with autism to learn how having a grandchild with autism changed their lives and how they supported the emotional and economic needs of their adult children and affected grandchild. Here is the link for more info:http://www.iancommunity.org/cs/ian_research_reports/ian_research_report_apr_2010
3:12
This was an important survey because it told us a lot about how many grandparents are involved and the significant amount of time they are involved in their grandchild’s life
3:12
Comment From christine

thank you! sorry i went of topic

3:12
No worries! Glad we could help!
3:13
The Grandparents Autism Network offers some useful and practical tips on making the most of the time you spend with your grandchild with autism. Here is a link! http://ganinfo.org/
3:14
Comment From Pat

I’m the grandmother of a 3 year old boy that has been diagnosed with Autism this year. The only symptom I can see which would qualify him as being diagnosed with Autism is he’s slow in speaking. Would that still classify him as being Autistic?

3:15
Hi Pat – thanks for joining! I am sure it is very hard to hear that your grandson has been diagnosed with autism. Autism is a spectrum disorder and typically there are a number of different characteristics that lead to a diagnosis.
3:16
You can learn more about autism, the signs, symptoms, and diagnosis here http://www.autismspeaks.org/what-autism
3:16
Comment From Pat

Thank you very much.

3:17
As a grandparent you may grieve not only for your grandchild, but also for your adult child. It is important to recognize the ways your can support your family, but remember, you need some time to process all the emotions that you are going through.
3:20
Many grandparents wonder, ‘How can I support my adult child?’ A major concern of grandparents is that the well being of their adult sons and daughters who are parenting a child with autism. Because a child’s autism can lead to emotional, financial, and marital stress, grandparents frequently play a significant role in helping their families
3:22
Here are some ideas on how you can help”
-Reassure your adult children that you are available should they need you, and then allow them some time to come to you without any pressure.-With day-to-day responsibility of caring for their child with autism, they will appreciate an hour, an afternoon, or a day of free time to meet their own needs. As you might imagine, it is often difficult to find someone you trust to watch your child when he or she has special needs.
3:23
Comment From Nikki

Hi I am gramma to 2 boys both with autism 4 and 5 yrs old 5 yr old is pddnos and 4 yr old is an aspie, my question is how can I get through to school they say he is to smart for special ed but the arent looking at the whole picture

3:24
Hi Nikki, thanks for joining. Can you just clarify which grandson you are talking about?
3:24
Comment From Nikki

the 5 yr old and sorry I have sole custody of them

3:25
Each child should be evaluated by the school district to determine what their strengths and weaknesses are. Goals and objectives should be evaluated in the IEP.
3:26
Here is a link to our IEP Guide that will help outline the steps of the evaluation and IEP process.http://www.autismspeaks.org/sites/default/files/iep_guide.pdf
3:27
Comment From Nikki

thats the whole issue, they wont do an IEP because he doesnt qualify for special ed services although he is listed as 504

3:28
If you really feel strongly that he is not getting the services he needs, you may want to contact an advocate that will help you with this process. It sounds like you really feel like he needs more than he is getting.
3:29
Here is a link to our Resource Guide. You can search by your state and find an advocate
3:29
Comment From Raquel

HI! I have a 4 year old girl who is a fraternal twin. Her sister is her best therapist. She was diagnosed at 3 with autism. It seems mild as she’s very interactive with us, just doesn’t really communicate verbally and has a hard time with crowds (social gatherings). Going to a party or out to dinner or a function is so hard, because she can’t sit still and just wants to run around. I actually cringe when I’m invited to something as I know it will be a marathon of running after our little sprinter. My insurance won’t cover ABA which was recommended any tips on curbing that behavior? We’re planning a Disney trip for December and I’m concerned on how we’re going to handle that.

3:30
Comment From Raquel

Sorry, I just realized this was a grandparent theme. so sorry for my long question :)

3:30
Hi Raquel! It is great that you are planning a special trip, but you are right, it is best to prepare!
3:30
We are big fans of Diary of a Mom. She has two daughters, one with autism. They just got back from Disney and you may find her posts helpful
3:32
Comment From Guest

Thank you so much, will be interesting to read her experience.

3:33
We just received this question via email and we would like to share!
3:33
“I just found out my grandson has been diagnosed with autism. I want to help as much as I can. What can I do to help my daughter’s family?”
3:35
Step back and take a deep breath! Your daughter’s family will need your support, but don’t forget to take some time to process your own feelings about the diagnosis. Before your daughter’s family knows what types of support they will need, they also may need some time to process. You and your daughter’s family will go through a range of emotions, including; sadness, shock, and anger.
3:37
There are many ways you can be of support, such as babysitting other grandchild, cooking dinner once a week, helping with the household shopping and other chores, all that you can do to help will make their life a bit easier during this challenging time.
3:38
Comment From Nikki

Are there agencies that deal with autism that have advocates to help? I mean he has been in school 2 wks and injured 4 times by another student

3:39
Nikki, you have to speak to the teacher directly and as soon as possible. If you don’t feel like this issue is being addressed than you have the right to call an IEP meeting. If this involves physical trauma or behavior, you want to do that right away!
3:39
Comment From theresa

My little girl was just diagnosed with Autism spectrum disorder .

3:40
Hi Theresa, we got your comments and today we are actually talking about grandparents. But since you came, we want to direct you to some of our valuable resources!
3:40
Check out our 100 Day Kit. The Autism Speaks 100 Day Kit and the Asperger Syndrome and High Functioning Autism Tool Kit were created specifically for newly diagnosed families to make the best possible use of the 100 days following their child’s diagnosis of autism or AS/HFA.
3:41
You can download it for FREE here or request a copy to be mailed. http://www.autismspeaks.org/family-services/tool-kits/100-day-kit
3:41
Comment From theresa

oh ok thank you this is my first time im sorry .

3:41
Don’t be sorry! We are happy to help!
3:43
Comment From theresa

Thank you so much i took down the # i will be getting that .

3:43
Great! Keep us posted and we are always here to help!
3:45
We just received another email question! “I have a hard connecting with my grandchild with autism. I want to have a relationship, but this behavior makes it difficult. What can I do to have a better connection?”
3:47
Many grandparents experience similar reactions. It can be difficult to build a relationship with a child as the very nature of the disorder complicates their social interactions. A child’s behavior may be off-putting and socially unacceptable which can lead to embarrassment. Be patient, and ask your adult children for support and help. Start out spending short periods of time in a structured activity that your grandchild enjoys. Get some success under your belt and go from there!
3:52
In honor of National Grandparent Day on September 11th the Family Services Team will continue to focus on grandparent role in the lives of their grandchildren with autism. We would love to hear from you! You can email us if you know of a good resource or have any questions at familyservices@autismspeaks.org
3:52
We would like to know if you have any resources because we are compiling grandparent resources to share with the larger community.
3:53
Here is a link to the National Grandparent Day
3:55
We would love to hear some suggested activities to do with your grandchild! Email them to us at familyservices@autismspeaks.org
3:56
As always, you can always get in touch with us! Autism Response Team (ART) members are specially trained to connect families with information, resources and opportunities.Call us at 888-AUTISM 2 (288-4762) or email us atfamilyservices@autismspeaks.org.
3:57
Comment From Valerie

My son has Aspergers and my dad comes from a different time…he just doesn’t understand. Do you have any suggestions? He loves him so much but always seems to be harsh because he doesn’t understand his behavior and thinks my son is just acting out.

3:57
Valerie you are not alone. We have heard from other parents as well about the interactions between their child and grandparent.
3:59
One of the ways is through education. Offer a book or article about autism that your father can read. He may want to observe your grandson in a classroom or therapy session to become more familiar with techniques used by professionals.
4:00
Here is a link to our Resource Guide that you may want to share with your father. http://www.autismspeaks.org/family-services/resource-library
4:01
Thanks to everyone for participating! We hope to see you all back here on WEDNESDAY, September 14 to continue to talk about grandparents and the role they have in the lives of their grandchildren!

Boynton Beach Grandparents Raise Funds for Autism Speaks

February 28, 2011 1 comment

This is a guest post by Autism Speaks Board Member Gary Mayerson. Mayerson is the founder of Mayerson & Associates, the first and only law practice in the nation dedicated to representing children and adolescents with autism spectrum disorders.

From its very inception, Autism Speaks has recognized the importance of family support, and the role of the extended family.  Indeed, Autism Speaks was founded by two highly motivated grandparents, Bob and Suzanne Wright.

On February 15, 2011, approximately 150 Boynton Beach grandparents attended a luncheon fundraiser for Autism Speaks, raising more than $10,000 in the process.  They came to listen to Autism Speaks Board Member Gary Mayerson speak about the epidemic-like statistics, and the many ways in which Autism Speaks is addressing the problem.

We wish to thank everyone who attended and, in particular, the following committee members who organized this worthy event:  Gerri Ackerman, Elaine Baranoff, Luba Ditkowitch, Ellen Feller, Harriet Fried, Carolyn Holland, Shirley Meltzer, Mara Lee Nozetz, Rita Rosen, Patty Rosenfeld, Phyllis Spieler, Dee Silverman, Ruth Schwartz, Renee Telsey and Sylvia Zeidman (Gary Mayerson’s mother in law).

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Love in Action

January 13, 2011 8 comments

This Family Services blog was written by a woman inspired by her friend, the grandmother of a young boy with autism.

I sit watching Jeremy always so busy with his repetitive activities while my mind races with thoughts.  Oh God, where is the place for an Autistic child in this world?  I am at the end of my rope, I don’t know what else to do.  I try to be positive and encouraging.   I am always helping and seeking ways to make him better.  I am so anxious I can’t sleep well at night for thinking about all our dreams for him that won’t come true, what he will not be able to do and ways to change these potential outcomes of his life. As I sadly ponder these thoughts, in my heart I hear these words:

The place for Jeremy is in your heart; it’s in mine.  Each of my creations has a unique place in my world, a purpose to be found.  Help him find his!  Trust me, I will guide you.  He was not sent to you to fulfill your worldly dreams.  He has come to be a special part of your life.

He has a sweet spirit that lives inside of him, one that can be overshadowed by fear but nurtured by love.  Learn to recognize it, see it, savor it and watch Jeremy become what I created him to be.  You are loving him the way he was created to be loved, continue.

How can I even use trust and Autism in the same sentence?  How can I acknowledge you, God, in Jeremy’s Autism for when I do I’m angry with you for letting it happen!  What do I need to know? What good can I do here?  If I am loving him they way he was created to be loved, then, Dear God, what can I do differently?

Then I remembered in my thoughts a Bible verse I heard a lot in church as I grew up.  “Love is patient, love is kind…love always hopes, always trusts, always protects and always perseveres.” I hear words again in my heart: 

To care for Jeremy, to make a safe place for him, and to provide what you can is one of the most life-giving, life-receiving things you can do.  For this is love in action.  Now, let my love nourish you as your love nourishes Jeremy.

After I hear these words I remember something else from the Bible…. “Be not anxious for anything but in prayer and thanksgiving make your requests known to God and the peace of God will guard your heart . . .”

While these thoughts are in my mind, I have been watching Jeremy line up his trucks.  As if on cue, he looks up at me and gives me one of those rare, beautiful smiles.  I think from my heart Thank You!

Click here to read the Family Services Community Connections page: “Grandparents Can Make A Difference!”

To sign up for our monthly Community Connections newsletters, click here

Family Services provides resources and information. If you have a question, contact the Autism Response Team today. If you’re concerned that your child may be affected with autism or if you’ve received a diagnosis, browse the Tools for Families section, where you’ll find our 100 Day Kit, and the Autism Video Glossary. If you’d like to do a quick search for service providers near you, select Find a Local Resource and browse the Resource Guide.

Grandparents – I Want to Do My Part

December 10, 2010 3 comments

This guest post is by Nancy Miltenberger, Chair of the, 2011 Lehigh Valley Walk.

As any parent or grandparent knows, hearing that a child you love has autism is devastating.  I have heard it twice.  My twin grandsons, James and Thomas are both on the spectrum.  A few years ago, James was also diagnosed with leukemia.  Fortunately, when the oncologists told us about his disease, they also handed us a road-map for his cure.  Three years and two months later (and many spinal taps, rounds of chemo, transfusions, and more) I am thrilled to report that James is cancer-free.  If James had been diagnosed with the same type of leukemia 60 years ago, his story may not have had such a happy ending.   In 1950, the cure rate for acute lymphoblastic leukemia was about 4% and in 2010 it is about 94%.  What a difference!

As we all know, there is no cure for autism…  yet.  But the model for leukemia gives me hope.  I am so thankful for James’s wonderful doctors and all the funding and research that went into pediatric cancers over the last few decades.  Now, we need to turn our attention to finding a cure for autism.  It affects far more people than pediatric cancer, diabetes and AIDS combined.  I want to do my part to see a cure for my grandchildren and others like them.  That is why I Walk and why I am the chair of the 2011 Lehigh Valley Walk Now for Autism Speaks.  I recently heard Dr. Geri Dawson, the Chief Science Officer of Autism Speaks, and I now have some hope for finding help for my grandsons and our family.   I feel that by supporting our local Walk I am helping to fund the research that is needed to help pull my grandsons and countless others like them from the isolation that is autism, and help them to lead normal lives.

 

A Tribute to Gampy

December 3, 2010 2 comments

This is a loving tribute by  Jeanette Dakessian about her father. She is the mother of a 10-year-old son with autism, and her father was a huge part of her son’s life.

I have a 10 year old , mostly nonverbal, son who has autism. He was so attached to  my dad, who he called grampy for many years, until my dad passed away last November from lung cancer.

My dad would come to my house three times a week to meet Tyler’s van at  my house and bring him to daycare because I worked full time, and he was retired. He would get my daughter off the bus as well. Grampy gave Tyler cookies every day for snack and Tyler loved that! He was always very excited when grampy was waiting for him at the house.  He would say “Gampy!!!!” anytime he saw a red truck, which is what my dad drove.

My dad would stop at my house multiple times a week to see the kids. Tyler would run into his bedroom to get his small photo album, come back out into the living room, and grab grampys arm pulling him over to the couch. Then he would take his arm and pull it over his shoulders so grampy was hugging him!

Then he would point at pictures of our family and look at Grampy, in the eyes, which he often has a difficult time doing, and say who ever or whatever was in the picture. For example…tree, ball, bus, Dee Dee(my sister) Di Di(my other sister), and so forth.

My dad would take his baseball hat and put it on backwards because Tyler would look at him and say, “uh oh!!” Then he would take it off my dad and put it back on the right way. It was their special thing, and oh so cute!

Tyler would not take anyone else’s hand and pull them to the couch. Only his Grampy. He loved him a lot and my dad loved him right back.

I brought Tyler to the wake last year and Tyler looked at him and said “night night!”  He does not understand death and it was bittersweet.  It has been a year since my father passed, and to this day, he still says ” Gampy,” when he sees a red truck. He will jump up and down and look so excited thinking “Gampy is back to see me.” It is sad to see that Tyler is disappointed when its not him, but he is so blessed to have had Gampy in his life.

We would like to hear from you! Share your story about your experience as a grandparent of a child with autism. E-mail us at editors@autismspeaks.org. For more information about how grandparents make a difference, visit us here.

Grandparents – An Ache in the Heart

December 3, 2010 3 comments

My beautiful six year old granddaughter has autism. It is painful to even think about it; to even consider that this lovely little girl is a “special needs” child. My heart aches to know that this is a condition she will have to deal with for the rest of her life. The worry weighs me down. How will this condition affect her life and her relationships? How will she live her life as an adult? How will she be able to work and support herself? As she goes through life, will she be able to handle the many thoughtless, insensitive people she will meet who do not understand her condition? She is so lovely; I hope her good looks will have a positive impact on her future. There are so many concerns! I sometimes wish I could “will” the autism away. If I could just close my eyes and concentrate hard enough, then it would evaporate. At times, I have even “bargained” with God. “Take it away from her and give it to me-or give me whatever you want. Just leave her alone!” no response. Actually, I am old enough to know that this is not how God works. Wouldn’t we all “bargain” away the problems and concerns of our loved ones if we could? I also ache for my son and his wife and their two other children. Sarah’s condition demands so much of each of them! The needs seem endless. There are MD visits, MD visits again, therapists, medication, a demand for endless patience, functioning on a lack of sleep, the need for additional financial resources and, then deep-seated compassion; all these issues which must be addressed on a regular basis create huge responsibilities.

Even as I occasionally wallow in self-pity, I realize that we are not the only people on the planet dealing with adversity. Why do I think I should be exempt? Why do I think I should coast through life while others deal with major adversarial issues? What am I thinking and saying with my “empty-headed words?” I cannot see the mind of God-as much as I try.

My concentration on the problem often obscures my vision of the many gifts present within it. I have seen my granddaughter, Megan, Sarah’s eleven year old sister, blossom as a caring and compassionate person. Megan fosters the art of communication with a little girl who has difficulty verbalizing and expressing herself. It really is a wonder to see this exchange of love. Megan possesses a wisdom beyond her years and a heart that has been honed by deep compassion and understanding. Little Tommy, Sarah’s four year old brother, is too young to understand the implications of Sarah’s occasional to frequent aberrant behavior, but he still loves her and is unsparingly generous with hugs, kisses, and sharing-at least most of the time! His extensive language skills also challenge Sarah’s attempts at verbalization and communication. When I hear Sarah say, “Grandma, I love you,” my heart melts. Those words take on new meaning when there is a serious language deficit. Words become more important and more meaningful in the midst of paucity; they are no longer taken for granted.  Sean and Sharon are the epitome of selfless, caring, and compassionate parents. I am sure that Sarah’s condition has stretched them beyond where they ever thought they would have to go. No saints have ever worked as hard or loved as totally! Their unending selflessness has become a beacon of light in Sarah’s life. Would all this personal growth and development have happened without the presence of Sarah’s condition? Who knows? Why does one need adversity to grow as a person? But, upon reflection, it seems to me that the human heart needs outside forces (both good, bad, and in-between) to help it stretch and grow. Carl Jung once said, “Out of opposition comes new birth.” I know the full answers are within God’s purview and not within the limitations of my own mind-if only I could always remember that!

My husband and I, now in our retirement years, have always prayed that our retirement would be meaningful. We did not want to just fun and frolic in our golden years. We wanted a deep spirituality in this third phase of our lives. Our years are numbered; we are getting closer to the day when we will meet the Lord and we wanted to continue preparing for that meeting in a significant way. Little did we realize that in our retirement years we would be very involved with helping Sarah and her family! We did not anticipate the challenges, the work, the love, that would be involved in being present to them. We did not anticipate that our own personal and spiritual growth would be expanded and stretched. Ironically, nor did we anticipate the unbelievable joy that we would experience as we journeyed with them! As parents, we did not always fully enjoy our own children because we were young, inexperienced, and filled with anxiety about always doing the right thing. We mellowed as we aged and so, as grandparents, we were better able to appreciate and marvel at the growth of children. We have witnessed the incredible expansion of the human heart in the midst of Sarah’s condition. We have witnessed Sarah’s parents and siblings lovingly interact with her. We have also seen dedicated doctors, teachers, therapists, and counselors strive to break through the barriers so that Sarah will maximize her growth as a person and an individual. We have seen ourselves become more fully aware of the fact that limitations and disabilities are not always visible. There are many disabilities that are unseen, hidden deep within the human heart and mind-even within the body and the internalization of that fact has made us more compassionate people. We have come to learn that there are many gifts to be found in the midst of adversity.

There still remain more questions than answers but, ironically, one can only play the hand that has been dealt to you. This is the only life we have and so the challenge is to do the best we can and know that God journeys with us during the good days and the bad days as well as through our doubts and fears. There is still much uncertainty about Sarah’s condition. I do know, however, that the incredible amount of love surrounding Sarah will help her to grow as a person and to ultimately reach her full potential. And, when I am gone, I will still love her.

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