Grandparenting a Child with Special Needs: For the Love of Aimee, Pt. 1

Grandparenting a Child with Special Needs: For the Love of Aimee, Pt. 1

Julie Riera Matsushima shares what she's learned about grandparenting a child with special needs from her granddaughter Aimee.

A few months ago, I received an email about For the Love of Aimee, a memoir written by the grandmother of a girl with special needs. My ears perked up immediately because the topic of extended family members doesn’t get nearly enough press in the special needs world. So I read the book eagerly, but decided against doing a book review.

Instead, I asked author Julie Riera Matsushima if she would write a guest blog for DifferentDream.com and share a grandparent’s perspective directly with readers. To my delight, Julie agreed. In today’s post, she talks about the importance of being loving parents to children who are  parents of kids with special needs. In tomorrow’s post, she’ll share what’s she’s learned about grandparenting a child with special needs.

Grandparenting a Child with Special Needs: Being a Loving Parent First

Becoming a grandparent wasn’t an especially attractive proposition for me at the time.  I was excited but I knew I wasn’t going to be one of those over-indulging grandmothers carrying around a mini-photo album of the grandkids in my purse to show everyone I knew.   No, that was not for me!  I was a career business woman, and community activist and wasn’t interested in playing that role.  I had raised my kids and was finally at a place where I could enjoy all life had to offer.

I Became One of Those Grandmothers

But what I didn’t know then was that I would, in fact, become one of those grandmothers.  Not to the extreme, but certainly to the point that the love in my heart for my grandchildren would consume me in time.  I would become overwhelmed with joy, grief and pride especially when it came to Aimee, my special needs granddaughter and her identical twin sister, Chloe.  Aimee’s presence in my life would change it forever and take me on an unexpected journey–a journey that would lead me to inspire and encourage other grandparents to do the same.

It hasn’t always been easy, though, because the first challenge as a grandparent, of course, is dealing with your own children—the parents of your beloved grandchild.   This can present challenges in the best of circumstances, but when it involves a child with a disability, illness or special needs, it presents a dramatic change of circumstances.  My experience has been that some grandparents, like me, get very involved while others, to the dismay and disappointment of their children, never become involved at all.  In fact, many avoid involvement with the special needs child and focus on the “normal” children in the family where relationships and activities are more familiar to what we expect ourselves to do as grandparents.  It definitely takes courage to step up and become involved with the special needs child.

Remain a Loving and Caring Parent

First and foremost, your children need your help and support.   You must demonstrate that you remain a loving and caring parent to them.  This is where parenting the parents is a delicate balance of showing your love and support, while at the same time maintaining love and advocacy for your special needs grandchild.  Life can be difficult for these young parents.  They have had to learn to cope with a situation they didn’t expect.  They may feel abandoned and isolated by family and friends.  But, for me, it was an opportunity to provide guidance and wisdom and to lead by example.  That a good parent never abandons their child–no matter what difficulties they face.  So, it begins there–setting the example of a parent with love, support and commitment to your child.  And then as a loving and involved grandparent to their child.

This has been my approach from the beginning.   I have paid my dues by exhibiting my commitment to being involved in Aimee’s life through thick and thin and it has paid off.   I have earned the respect and trust of my children, Aimee’s parents, by being consistent and steadfast in my commitment to help.  We don’t always agree, but they listen when I have something important to say.  Aimee doesn’t have a voice of her own and they know I advocate for her with love in my heart.

Step In and Step Up to the Job at Hand

When times are difficult for them, they know they can always on us, the grandparents,  to step in and step up to the job at hand.  I’ve probably become more involved than most by taking Aimee across the world for extended therapy, but I could just as easily be a grandmother who could offer that support by taking her to a therapist across town.  The end result is the same; a demonstration of love and support.  Sometimes it doesn’t even have to be that.  How about a simple respite for a few hours?

Win a Free Copy of the Book

Julie has generously donated three copies of For Love of Aimee for a book giveaway. To enter the drawing to win one of the copies, leave a comment about how grandparents are involved in your child’s life. The cut off date for comments is midnight on Monday, July 11, 2011.

Come back tomorrow for Part 2 of Julie’s guest post. And to learn more about Julie, visit her website at www.juliematsu.com.

Part 2

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Special Needs Grandparenting: When They Won’t Hug Grandma

Special Needs Grandparenting: When They Won’t Hug Grandma

Special Needs Grandparenting: When They Won’t Hug Grandma

In today’s guest post, Laurie Wallin answers questions pertinent to many parents of kids with special needs. What do you do when your kids hurt their grandparents’ feelings? And how can grandparents do their thing, when building a relationship with the grandchildren is difficult? Read on to find out how her family handles situations like that.

Special Needs Grandparenting: When They Won’t Hug Grandma

We flew 8 hours with 4 kids and umpteen bags across the country to visit Grandma. Within 2 minutes they’d already hurt her feelings.

Expect Stress

It’s always been stressful to balance the expectations of extended family and the needs of my two older girls, adopted as toddlers from foster care. Both their difficult history and their bipolar diagnoses add up to one big misunderstanding waiting to happen with well-meaning family members.

This time was no different. They’re older now, and more socially adept (with much therapy, medication, and practice!) but it didn’t make a lick of difference when we walked in to Grandma’s home and they 1) wouldn’t look at her, and 2) one of them had a fall-on-the-floor meltdown 3 minutes after we arrived. No amount of “when we get to Grandma’s house, please say hello, then find a quiet place to get used to the house” seemed to help.

Deal With Broken Expectations

I stood, still in the doorway, crestfallen, despite KNOWING deep down that this isn’t an intentional offense against Grandma. But she couldn’t hide it in her face. The twinge of disappointment—of rejection—behind her eyes. I know that look too well, even these many years after adopting my girls.

It never gets easier to manage that first moment of broken expectations. Or to recoup that loss and move on to a pleasant visit. It takes persistent, gentle reminding—both of our relatives, and of ourselves—to respond with grace to our kids’ continued special needs. When we are diligent to do that work, it’s amazing what joys wait just around the corner from that first awkward moment (or entire day).

Focus on Good Memories

For us, the payoff was a fabulous carnival experience! On day 3 of the visit, we spent the afternoon at the Miami county fair. It was our first foray into the world of crowded, sensory-and-sugar-overloaded silliness. And it was a blast! Our kids, to outside observers, were just like any other cotton-candy-eating, carnival-game-playing, roller-coaster-riding kids there. It was an amazing gift of a memory for the whole family.

Including Grandma, who spent the day chasing them around in her scooter… winning their hearts with each mischievous smile. I’m pretty sure their squeals of laughter reminded her how much she matters to them too. Even if they sometimes can’t show it.

How Do You Do It?

Now it’s your turn. Leave a comment about how  you overcome disappointments or awkward special needs grandparenting moments. Or leave a question asking for advice, if you like.

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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Laurie is the mom of four daughters–two adopted with developmental delays, mood disorders, and ADHD. A former junior high teacher turned speaker and life coach, she loves to learn, laugh until their sides hurt, and help women be courageous in life.

Author Jolene Philo

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Grandparenting a Child with Special Needs

Grandparenting a Child with Special Needs

Charlotte Thompson's book about grandparenting a child with special needs is a great resources for extended families.

Grandparents can be a great help to families of kids with special needs. They can also be a great hindrance, often because they are unsure of how to help or because they are grieving over lost dreams for their children’s families and their grandchildren. With that in mind, here’s a resource to consider as a last minute Christmas gift for those grandparenting a child with special needs.

Resources for Grandparenting a Child with Special Needs

But, resources for grandparents are few and far between. But I recently ran across one that sounds very helpful. Now, I haven’t had time to read the book, so I can’t give a personal recommendation. But here are a few reviews for you to read:

Charlotte E. Thompson

The author, Charlotte E. Thompson, is a pediatrician, mother and grandmother, so she speaks from professional and personal experience. From the reviews, I’m eager to read the book – though when that will happen is a little fuzzy. If I buy a copy and add it to the stack of special needs books on my bedside table, will they breed and create more work?

Your Two Cents Worth

If you’ve read Grandparenting a Child with Special Needs, would you please share your thoughts by leaving a comment? Maybe your review will help potential readers (myself include) decide whether or not to purchase the book.

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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