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.
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My apologies for being so late announcing the winners in the drawing! The three people who will receive copies of “The Love of Aimee” are:
Kathy, Lisa, and Lynette
I will contact each of you via email to get your mailing addresses and pass the information on to Julie’s publicist. She will send your books very soon.
Congratulations!
Jolene
This is very touching Julie and I adore your perspective. We are fortunate that the grandparents are very supportive as is the extended family yet our team of resources all live 700 miles away from us. Due to the strains of a failing economy and the treat of loosing health insurance we packed up and moved to where the jobs were and near a hospital that could treat my child. We have been in the cycle that people want to help and don’t know how, and family that wishes to extend help but are at a loss as to how to do it. In a bind its been the grandparents who have packed up and uprooted their lives to care for younger siblings so I can take care of my sick child at the hospital. They are always the ones who will talk to you till all the phone batteries run dead and even if they are miles away you don’t feel so alone. That is a running joke in our house. In an atmosphere where more and more of us feel alone on this journey its refreshing to see that the support we all need is a phone call away! Again thank you Julie, and also to you Jolene for always sharing such wonderful Blogs.
Obviously, Julie’s grandmothering story touched the hearts of many of you. For family’s like Lynette’s, where extended family hasn’t been able to fill the gap, have other people filled the gap for you? Friends? Neighbors? Church family? We’d love to hear how they helped you cope, so please leave a comment if you like.
Jolene
Bless you Julie for stepping up and the support you’ve given!
We have/are walking the hard road of not having family support or understanding, and I even have a sister that is a doctor. Your daughter is very blessed to have you walking along with her and by her side.
I am grateful for the couple of friends that have stepped up, sending me notes, calls and even meeting at doctor appts to be with me.
I found in our family that when my daughter was diagnosed with AML, suffered stroke and lung hemmorage that it wasn’t just the child that got sick but the whole family…we had to change the way we do everything, sometimes it can be very hard for the extended family to make changes, conpromise or even lend any kind of helping hand! We are so thankful that God did provide friends (christian family) to come and help us!!! We have watched God provide!
There is no substitute for the support of grandparents, both for kids with special needs and their parents. My husband and I have an almost 12 year old with spina bifida and hydro and almost 20 diagnoses altogether. She has had more than a dozen surgeries in her lifetime and is facing more. She has a little sister as well. My parents, though they live 450 miles away, are only a phone call away. My husband’s dad and stepmom live locally and have come to our aid at a moment’s notice. They are our biggest prayer warriors and our biggest cheerleaders. They support hard decisions even if they disagree or don’t understand. Sometimes it is not help we need but someone to talk to, bounce ideas off, and just for encouragement. They have high expectations for Emily and don’t treat her differently than the other grandkids. Not many people are willing to learn and then stay current on the medical procedures required for EMily’s daily care, but the grandparents are always prepared to be our backup. One of the biggest fears of parents with kids with special needs is “What will happen to my child if something happens to us as her parents?” We know, and it is a priceless comfort to us. Her grandparents would be there.
Jolene, thank you for sharing this book. And Julie thank you for sharing your perspective as a grandparent. I do have to agree, as I am sure my parents felt the same way and my mom has always said to me, “I know it is hard for you Lori and it is hard for Brandon, but first and foremost, you are my daughter and Brandon and is my grandson.” Even though my parents live in another state, my mom was always the first to hop on a plane and be by my side when I felt I could no longer go on. All of Brandon’s medical complications were weighing on me to the point where I was becoming ill as well. My mom, amazingly, stepped in and took on the role of mom to me to make sure I got better and was by Brandon’s side as a grandparent when I was jut too ill to do more. She was there, as a mom to listen to me and offer support and as a grandmother to learn more about Brandon’s conditions and what she could do to help. She even spent several nites in the hospital with Brandon and myself so she could gain a better understanding of what we were going through at the time. Grandparents truly have the hardest task of all, trying to be there for their childen and trying to be a grandparent to their children’s kids; equally harder when the journey is an unexpected one that takes you down a quite different path.