Interview Julie Wolfe: Picture Book for Siblings of Child with Special Needs, My Holly

Posted in Developmental Issues, Interviews, Special Needs Children by - February 08, 2012
Interview Julie Wolfe: Picture Book for Siblings of Child with Special Needs, My Holly

Today you will meet one smart mom!  A mom whose story will touch your heart. Julie Leavitt Wolfe is both author and illustrator of  My Holly – A Story of a Brother’s Understanding and Acceptance This picuture book is to help siblings of a child with special neeeds understand and accept their brother or sister who needs exceptional care.  Bravo and thank you, Julie Leavitt Wolfe,  for your adorable children’s book, My Holly. This book should be in all health care clinics, public and school libraries and especially in all homes with a special needs child. See my review of My Holly here.

Welcome Julie Wolfe to our Author Interview Series. We are pleased to add this new author and illustrator to our site. Julie’s first picture book was published in October 2011 by FriesenPress.

Lorna: Let’s begin, Julie, with a bit about you. Tell us about your studies, your chosen line of work, and what made you decide to become a full time mom.

Julie Wolfe >> Hello.  Let me just say I’m honored to be one of your interviewees!

I graduated from the University of Hartford with a BS and a MA in Early Childhood Education.  It’s funny, I originally thought I’d major in Communications, because I always loved writing.  Yet I also thought I’d like to become a teacher; a Kindergarten teacher.   I enjoyed babysitting, and had always spent my summers working as a Counselor in day camps.  I loved the feeling I would get after working with a child on something he or she was struggling with, or was learning for the first time, and the look they would have when they realized they ‘got it’!  I wanted to be the one to teach kids things for the first time.   So I became a teacher, and did my writing just for me.

I was lucky that I had the choice whether or not to go back to teaching after I had my son Ryan.   Becoming a stay-at-home-mom was actually a very easy decision for me to make.  I think it must have been the very first time I held Ryan,  I knew I was NOT going back to work, and leaving my boy anywhere!

Lorna: Please tell our readers about your daughter’s health issues and how her care and challenges  has impacted your whole family.

Julie Wolfe >> It’s a pretty ‘intense’ story.  My daughter Sydney was born five and a half weeks early, but that really has no bearing on what would happen in the months to come.  When Sydney was four and a half months old she suffered a Stroke on the right side of her brain.   The doctors didn’t know what caused the Stroke, and we were able to bring her back home after just 5 days.  In hindsight, we should have asked them to look further, but since I had a three year old at home, and had just spend two and a half weeks with Sydney in the N.I.C.U. just four months earlier, I was anxious to get home.

After being home for a day and a half, we noticed Sydney’s right hand twitching.  We assumed she just needed her Phenobarbital (the seizure medicine she was taking due to having the Stroke)  adjusted.  This was on a Friday afternoon.  We brought Sydney back to the hospital, and it wasn’t until Sunday night that we found out she had suffered another Stoke, but this one was on the left side of her brain.  Sydney was transferred that same evening to Cornell Hospital in New York City, where she stayed for almost a month to undergo tests, observations, countless M.R.I.’s, E.E.G.’s, injections, and even a blood transfusion and muscle biopsy.

After Sydney was six and a half months old she suffered yet another Stroke, this time it was in the back left part of her brain.  Back to Cornell we went, but this time again, only for about 5 days.  They just wanted to make sure Sydney was stable and comfortable, and to readjust ALL the medications she had been taking since the second Stroke.

The team of doctors at Cornell pretty much told us that Sydney would most likely eventually just, ‘Stroke-Out’.  Where she would continue having Strokes until there was no living, viable brain left.

During the time Sydney was in the hospital, my husband and I took turns staying overnight, and sleeping on the small pull-out chair that sat next to Sydney’s bed.  We had Ryan at home, and one of us always made sure to be there for him as well.

It was the hardest experience I ever had to endure as a mother.  No matter where I was I wished I was someplace else.  If I was home with Ryan, I wanted to be with Sydney.  When I was with Sydney, I wanted to be back home with Ryan!

When Sydney did come home it wasn’t easy at first.  I was so happy to have both my children under the same roof again, but dividing my time between Sydney and Ryan and my husband and myself was hard!   It took a lot of adjusting to, and all of us had to make sacrifices.  You get use to things though, and eventually you get back into the swing of things.

Lorna: Many parents of children with special needs tell us how isolated from their previous friends they become because they have no time for social gatherings, long phone calls, or even a quick coffee to catch up. Was this the case for you? Where did you find support? How do you care for yourself so you can continue to care for your family?

Julie  Wolfe >> I didn’t so much feel isolated from my friends; the good friends I have were actually around me more then before!   I did, however, feel isolated from the ‘real world’.  I felt even though my friends were supportive, I knew nobody truly understood what my life was like.   Some of my friends had children the same age or even younger then Sydney. and all of them were showing  ‘developmentally appropriate’ behavior.  And here was my Sydney,  so “developmentally delayed”.  I felt like it was constantly brought to my attention that Sydney was somehow different, and wasn’t like others her age.  This all made me feel like I was living a life all by myself!

I’m pretty much an extravert, and overly open about myself, so as for where did I find support, anywhere I could!  I loved looking on the internet for sites about children with special needs.  For me, it was just nice to know I wasn’t the only one out there dealing with the same issues and feelings and problems as me.  Even though 9 out of 10 times I didn’t actually respond or connect with anyone for support, but knowing support was out there was what I needed.

How do I care for myself?  I try to make Sydney’s schedule work for me and my schedule.  For example I’m a runner, and I like to do my running in the mornings.  Sydney has always been an early riser, and I’m talking sometimes 4:00 early!  I love it though, that’s my ‘Me Time”, and when Sydney would go back down for a nap around 6-6:30, and since no one else would be up yet, that’s when I’d do my running.  Other than that I don’t have much other scheduled ‘Me Time’.  I take it when it comes.

 My Holly written by  Julie Wolfe: A Picture Book for Siblings of Child with Special Needs,Lorna: I know your book, My Holly – A Story of a Brother’s Understanding  and Acceptance, has only been out since October 2011, but, can you tell us what is the feedback you have received? What are the comments you have heard that have made the effort required to write and illustrate your book all worthwhile?

Julie Wolfe >> I have to admit that it’s not the feedback from others that has made this whole process and experience so worthwhile, it was Ryan’s reactions–both after reading the book to him even before it was published, and his reaction the first time he saw the finished product!  After reading the story to him for the first time he got upset and started crying.  He said he wanted it to be a surprise, and I shouldn’t have read it to him.  I knew he was feeling emotions he didn’t understand, so I told him it wasn’t a story about him, or Sydney, and it was a story about other kids.  His reply was, ‘but it’s the same life’.  In the book Jack says he’d wait 1 million, 5 thousand and 2 days for Sydney to be able to do all the things his friend’s sister can do.  I told him that he never said anything to me like that before.  He said to me, “But I would wait too!”  That was all I needed–my job was done!  I almost started crying then!   When I got my first box of published books,  and we saw my book looking like a ‘real’ book, Ryan hugged me and said, “I’m so proud of you.”

I have gotten a lot of feedback from others too, all very positive.  This month is a big month for me and the book.  Not only am I being interviewed by you, but I’m also reading the book at a Siblings Group at Sydney’s school.  I’m also going to Washington Elementary School in Wyckoff, NJ,  and reading the book to the kindergarten and 1st grade classes as the Author Reader for the month.  Also, Valley Hospital in Ridgewood, N.J. just purchased 25 copies.

Lorna: On February 27th  2012 you will be my guest on The Coffee Klatch Tweetchat at 9 a.m. EST, and our topic will be, “Siblings of a child with special needs – How to show they are important and loved too!” Can you tell us how you have tried to make your other child feel appreciated and loved?  What advice do you have for parents to help them boost their young child’s confidence so he feels good about himself?

Julie Wolfe >> We spoiled him rotten! :-) Well, in the beginning we did.  We spoiled him more with giving in to things he wanted to do, like letting him watch one more show before bedtime, or having a few more M & M’s at ‘treat time’, or what seemed to be ok at the time, but what we still have ‘issues’ with today, is we let Ryan sleep in our bed EVERY night!  It was what he needed from us, and my husband and I understood.  I felt guilty for having to be away from him so much, and I wanted him to know that even though I had to be with Sydney a lot, I still loved him so, so, so, so much!

Ryan’s favorite restaurant is Friendly’s, so I would take him A LOT to Friendly’s for lunch.  In the book there’s a part where the mom takes Jack to his favorite restaurant, Syd’s, where if he eats enough of his grilled cheese and curly fries he can have a big cookie with M & M’s on top.   Friendly’s spelled backwards, up until the ‘e’ almost spells ‘Sydney’!  If Ryan ate enough of his macaroni and cheese and waffle fries he could get a dish of ice cream with Oreo’s on top.

I also talked to Ryan a lot about what was going on with Sydney.  I didn’t go into details with him, but he knew something was going on with her, and it was serious.   I guess knowing a little something about child development helped me.  I knew that if he understood as much as a 4 year old could, he’d feel safer; and know there were no secrets.

Honestly, as long as it can’t cause harm to themself or to others, give your child whatever they want!  I’m not saying if they ask for a gallon of ice cream for dinner to give it to them, because that would not be good for them.  I mean give in to what they need emotionally.  If he or she doesn’t want to go on a play date, or says they are too tired to go to baseball practice, or gymnastics class, don’t go!  Stay home and play games, or just do your own thing while they play games.  Just be around them more.  Ask a lot of questions.  Be even overly interested in everything they have to say!

Interview Julie Wolfe: Picture Book for Siblings of Child with Special Needs, My HollyLorna: In the book, the character Jack has a friend named Elmer, who has a sister 3 weeks younger then Holly.  How did you come up with this?

Julie Wolfe >> Every name in this book has a meaning.  One of my best friend has a son, Luke, who is the same age as Ryan.  She also has a little girl, Brianna,  who’s 2 weeks younger then Sydney.  Ryan always compared Sydney to Brianna, and was always so shocked that Brianna is younger then Sydney, but can do so much more then Sydney.

Ryan also said to me once that sometimes he wishes that Sydney wasn’t here.  I told him that I totally understood him feeling that way, and it’s ok to feel that.  A social worker at the center where I take Sydney for therapy always comes down to see Sydney on days I’m there.  I told her about this conversation I had with  Ryan, and she told me I gave him the perfect response.  Because now that I told him his feelings were ok to have, he more then likely won’t have them anymore.  It was really these two occurrences that gave me the idea to write the book.

Lorna: Do you have new projects for 2012? Please give us the links where your bookMy Holly – A Story of a Brother’s Understanding and Acceptance, can be bought and how we can follow you.

Julie Wolfe >>  I’m excited to say I do have a new project in the works!  This one isn’t a children’s book.  This one is for the moms!

You can buy My Holly through my web site: www.my-holly.com, Amazon.comAmazon.ca 

I have a Facebook PageMyHolly  You can follow me on Twitter  @myholly2011

Lorna: Good luck on your new book for moms. The best to you and your family. Thank you very much for your honest, inspiring answers and looking forward to our Coffee Klatch Tweetchat Feb. 27th, 2012, 9 a.m. EST.

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This post was written by Lorna
Lorna d’Entremont: Co-owner of SentioLife Solutions, Ltd. the company behind KidCompanions Chewelry (2007) and SentioCHEWS (2013), mother of three, grandma of 5 and wife. She is a retired teacher and special needs advocate. Throughout she has taught all levels from grade 2 to grade 9. Lorna loved teaching and enjoyed seeing the students progress in the school system. During her 30 year career she took a few years off to raise her three children.
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