From a Special Needs Grandpa

by jphilo | Aug 13, 2015 | Advocacy, Different Dream, Special Needs Parenting

From a Special Needs Grandpa

Welcome to Different Dream’s continuing series about grandparenting children with special needs. Last week, you heard from Brielle Stull’s grandmother. In this post, you’ll hear the perspective of a special needs grandpa who happens to be Brielle’s grandparent, too.

From a Special Needs Grandpa

The Special Needs Grandpa is There from the Start

I was there when my daughter was born, when she rode her first bike, when she finished college, when she walked down the aisle, and when she had her first baby.

I remember her calling me to announce she was pregnant again and that she also had chicken pox.

I told her she should have an abortion. Why would she risk her health and the baby not being healthy like their first daughter?

I was angry when she and her husband decided to continue the pregnancy. And I worried. A lot.

I celebrated with the other grandparents when Brielle was born healthy. We expected her to look different or act different. She looked perfect. I was so relieved.

I got angry when we found out months later that she really wasn’t healthy. Brielle had cerebral palsy.

And I became a special needs grandpa.

A Special Needs Grandpa Can’t Fix Things

My daughter didn’t listen to me when she was pregnant. But, I learned to listen to her after Brielle was born.

I watched and asked questions. I watched at therapy when we went along. I listened as my daughter’s husband told us what the doctors told them.

I watched my daughter. I watched her struggle being a good mother to Brielle. This wasn’t the life I wanted for any of them. It was painful for a long time.

And I thought there was nothing I could do.

A Special Needs Grandpa Can Help

At first, I was afraid I would do something wrong. There were different ways to hold her, prop her up, play with her, bathe her, and put her to bed.

But, I learned what I could do.

I fed Brielle and sang to her. I could always make her laugh.

I set the table, cut the roast, and washed the dishes.

Mostly, I was just there to listen to my daughter. I was her sounding board.

A Special Needs Grandpa Can Celebrate

Having a special needs grandchild is a sad thing. I am sad for my daughter, her husband, their oldest daughter, and for Brielle. Their lives could have been so different.

I worry about all of them.

But I love watching how Brielle has made such great strides. Even more so, I love her joy.

She has amazing joy. That is when I learn something from Brielle. Have more joy.

Advice from a Special Needs Grandpa

Everyone’s situation is different. So, my only advice is this:

Figure out what you can do and do it.
Make sure you have a relationship with your special needs grandchild, whatever that means to them.

Here’s what worked for me:

I went to therapy sessions so I could understand about my granddaughter as well as what my daughter went through.
I went to activities like Special Olympics and Miracle League baseball to be my granddaughter’s biggest cheerleader even though I hate sports and going was inconvenient.
I figured out what I could do to help my granddaughter.
I did what I can to ease my daughter’s burdens.
I built a relationship with my granddaughter on her terms.
I will continue to be a positive influence on my granddaughter’s life in whatever way I can.

Give a Shout Out to the Special Needs Grandpa in Your Child’s Life

Thank you, Joe, for sharing your experience so honestly. Now’s your chance to give the special need grandpa (or grandma) in your life a shout out in the comment box.

Part 1: Different Dream’s Special Needs Grandparenting Series Begins
Part 2: Special Needs Grandparenting 101
Part 3: Special Needs Grandparenting–The First Word Is Never the Last Word
Part 4: The Special Needs Grandparenting Tug of War
Part 5: Special Needs Grandparents Are Part of the Village
Part 6: What’s It Like to Be a Special Needs Grandparent?
Part 7: From a Special Needs Grandpa

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Joe Zaccaria has a PhD from Columbia University and taught Educational Psychology at the University of Illinois until he retired in 1992. He was also a consultant and published eight books. He currently lives with his wife in the Atlanta area close to his daughter, Kerith Stull, and her family including his special needs granddaughter, Brielle.

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How I Became an Aspergers Advocate for Teens

Photo Via Flickr – by Kentucky National Guard Public Affairs Office

Different Dream is pleased to welcome today’s guest blogger, Kathleen Carter. She’s here to explain how she became an Asperger’s advocate for teens around the country. Her story is fascinating, encouraging, and convicting as her perseverance and creativity on her road to advocacy puts many of us to shame. See what you think.

How I Became an Aspergers Advocate for Teens

I remember being in elementary school when I realized that I was different from my classmates. I was paired up with another student, and I just couldn’t figure out how to get him to understand me. Frustrated, I began wringing my hands—a motion I used to do often because it would calm me—which led him and his friend to make fun of me.

As I got older, I learned more about my Aspergers. And though it has taken me a while to reach this conclusion, today I don’t think having Asperger’s is a bad thing. Not at all. In fact, in recent years, I’ve developed a sense of pride when it comes to my AS. I know that it makes me different from some other kids, but it also gives me something in common with the other wonderful people on the autism spectrum.

I wanted to help other kids with Aspergers to feel the same pride that I did while also educating my peers about it, but I wasn’t sure how to get started. Through trial and error, I figured it out. If you’re a teen with Aspergers, I highly encourage you to follow in my footsteps. It’s important that everyone on the autism spectrum know what they can achieve. Here’s how I became an Aspergers advocate:

I became an Aspergers advocate by becoming more independent.

When I started high school, my mom thought it was time for me to learn skills that would make me more independent. In this article from Autism Aspergers Digest, the writer provides tips for teaching independence skills and touches on the positive results that come with those skills. For example, in addition to learning the skill, the child with Aspergers gets a confidence boost from being able to do the new task and also has a great sense of wellbeing because they’re learning to take care of themselves in all aspects of life.

My mom and I placed a big focus on cooking. We went through many of her best recipes and now I can make each one. As I conquered those challenges, it made me think about what else I could achieve, and that gave me the spark I needed to create a plan for becoming an Asperger’s advocate.

I started swimming to become an Aspergers advocate.

Building self-esteem has always been a problem for me. Bad experiences with bullies in elementary and middle school really took their toll. That is, until I started swimming. Swimming became a part of my life when I started high school. I started it as a way to become more physically healthy—it’s actually a great form of exercise, in general, for people on the autism spectrum. As this article shows, people with autism can see many benefits when they swim—improved health, better attention spans, improved social skills, and so on.

And while I did certainly get more fit, the real bonus was the boost in confidence it gave. It turned out to be something I was good at and enjoyed. It also gave me a chance to work on interacting with people my age. As I got more comfortable around them, I began to realize that if I worked hard I could get better at communicating with my peers and adults. Without swimming, I don’t think I would have had the confidence to move forward with my plan to become an advocate.

I became an Aspergers advocate by working with an occupational therapist.

As I mentioned above, I’ve always had difficulty communicating with my peers. Especially in elementary and middle school, I’d be so desperate for my classmates to like me that I would experience extreme anxiety whenever I was in social situations. To help me become a better communicator, I worked with an occupational therapist. The Asperger/Autism Network explains how occupational therapy (OT) benefits people on the autism spectrum. Essentially, OT helps develop every day skills—in work, leisure, school, etc. My therapist and I worked on developing my communication skills in different settings. It has helped me immensely as I’ve started to speak to people more and more about what it’s like to be a teen with Aspergers.

Of course, each of these steps points to one achievement—building my confidence. Without that boost, I don’t think I’d be doing what I’m doing today. And I’m incredibly grateful to my parents and everyone else who has helped me make this happen. I love telling people about what it’s like to have Aspergers, and I hope I can keep doing it for a long time to come.

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What’s It Like to Be a Special Needs Grandparent?

DifferentDream.com’s series about grandparenting kids with special needs continues with a second guest post from Kerith Stull, who contributed last week’s installment also. The post below was written by Kerith and her mother, Manthia Zaccaria, about being grandmother to Brielle, Kerith’s daughter with special needs.

What’s It Like to Be a Special Needs Grandparent?

What is it like to be a special needs grandparent?

It is an entire range of complicated emotions. Emotions felt not only for my grandchild, but also for my own child who bore my grandchild. It is…
…hard
…wonderful
…sad
…joyful
…emotional
…trying
…difficult
….rewarding
….so many things

I am a special needs grandparent because my granddaughter is special.

The term “special” really defines her because that is what she is to me….very, very special. Life would be so empty without her.

Would I wish my granddaughter hadn’t been born? Never. Would I wish she were different? Never. This is who she is. And who she is helped make me, her grandfather, her parents, and her sister who we all are.

Before I was a special needs grandparent,

I grew up in in the 1940’s, an era when disabled people were rarely seen. And if they were seen, they were ignored. Not due to something they did, but rather because we did not know how to react or interact with them.

I, too, was guilty of this, and for that, I am truly sorry.

We were ignorant and didn’t know any better. But, most importantly, we now should know how to interact and should do and be better.

I understand my special needs grandchild.

I have been a very fortunate special needs grandparent. Early on, my daughter was able to explain and show me in detail what my granddaughter’s condition was and what she could and could not do. Over the years, I went to many therapy sessions with many different therapists. I’ve attended an IEP meeting. I’ve been to a few doctor’s appointments.

Because of my daughter’s willingness to include me, I have a very good understanding of her condition and can interact with her appropriately. I also know what my daughter goes through, so I can support her in ways she needs me most.

Advice from a special needs grandparent.

I’ve learned through the years that there are a few important things a special needs grandparent (or any grandparent) can do:

Balance being a parent and a grandparent. We sometimes find ourselves torn between trying to do what is best for our grandchild and what is best for our children. Sometimes we just want to say “Move over and I will take over”. Wrong! Know when it’s time to be a parent, time to be a grandparent, and time to be a friend.
Ask permission to offer advice to your children and ask it gently. You might say, “I have a thought on this and, if you would like me to share it with you, I will.” If they say yes, tell them what you have on your mind and let that be the end of it. Always respect them and their decisions.

What I need as a special needs grandparent.

Frankly, I don’t have a lot of unmet “needs” as a special needs grandparent. Maybe because I have always accepted and loved who my granddaughter is plus I have a really good relationship with my daughter. But here are two things I know most grandparents need:

It is so important to be included and feel I have a role to play. I like being included in my daughter’s life including everything about my grandchildren. When she includes me in family activities, including those for my special needs granddaughter, I feel connected. When she asks me my opinion, I don’t expect her to always take my advice, but it certainly makes me feel appreciated to be asked. I want to help and try to offer that, but I know sometimes I can’t be and do what they need and that’s OK, too.
I need others to understand and appreciate my granddaughter. When I meet someone new and tell them about myself and my family, I always tell them about my granddaughter the same way I tell them about my other grandchildren. If they have questions, I try to present myself as being open to their questions and answer them as accurately as I can.

This special needs grandparent has worries.

I don’t have any concerns for my granddaughter because she is so well taken care of by her parents that I don’t have to worry about her. She is happy, active, and loved. Perhaps I worry for her when we are all gone, but I can’t do much about that.

If I have any really true concern, it is always for my daughter. I know what effort she has put forth to accomplish everything for my granddaughter. I admire and respect her so much. But, I know it is constant and not easy. I worry for her and my son-in-law, for their happiness and peace in life.

I have always felt the hand of God on my shoulder, guiding and sustaining me at times when I really needed Him. He helps ease my worries.

How can a special needs grandparent help?

There is plenty a special needs grandparent can do. They can (and should)…
….examine your own unique situation
…analyze what is needed
…step up to the plate
…be accepting
…be respectful
…be supportive
and above all…
…be loving to both to your grandchild and your child. I’m never sure who needs our support more.

A few more things…

Be sensitive and on the alert at all times to situations and frustrations that can occur. We need to know when to back off and when to be there.

We need to be there not only emotionally, but physically. Maybe your child and his or her spouse need a night out. Maybe your grandchild needs a special treat or one-on-one time with you. Be there for them.

Ask your child to empower you. If your child has taught you well, you’ll know what to do for your grandchild and for your child. Just follow your heart.

Part 1: Different Dream’s Special Needs Grandparenting Series Begins
Part 2: Special Needs Grandparenting 101
Part 3: Special Needs Grandparenting–The First Word Is Never the Last Word
Part 4: The Special Needs Grandparenting Tug of War
Part 5: Special Needs Grandparents Are Part of the Village
Part 6: What’s It Like to Be a Special Needs Grandparent?
Part 7: From a Special Needs Grandpa

Do you like what you see at DifferentDream.com? You can receive more great content by subscribing to the quarterly Different Dream newsletter and signing up for the daily RSS feed delivered to your email inbox. You can sign up for the first in the pop up box and the second at the bottom of this page.

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Thia Zaccaria graduated from Cazenovia College, was a homemaker, and worked for her husband’s consulting business until they retired in 1992. She currently lives with her husband in the Atlanta area close to her daughter, Kerith Stull, and her family including her 19-year-old special needs granddaughter, Brielle.