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

by Aug 6, 2015Advocacy, Special Needs Parenting5 comments

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…
….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

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By Thia Zaccaria

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.


  1. Jolene

    Let me check with Thia and Kerith and get back to you. Jolene

  2. Jolene

    Thank you, Darlene. Your encouragement means a great deal to Kerith, I’m sure.

  3. Deborah

    Hi Thia! I liked this post a lot and I thought it would be very valuable to our readers. Would you please let me repost it on Special Needs Essentials Blog with your short bio? Thanks! Deborah

  4. Darlene Kennedy

    Thia! Brielle and Kerith are so blessed to have you in their lives and vise versa. What a beautiful family you have! Darlene

  5. Sylvia

    You are an awesome grandma! I’ve read Kerith’s book and have the utmost respect for her. She has worked tirelessly to give Brielle the best opportunities and Brielle is such a sweetheart! Oh and BTW, I live not too far from Cazenovia College!

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Meet Jolene

Jolene Philo is a published author, speaker, wife, and mother of a son with special needs.



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