Here’s a special treat–interview with mom times 4 and author of the recently released children’s book, hi My nAMe is MiLLY, Heather Ziessler. [all images courtesy of Heather Ziessler]
Thanks a bunch for taking the time to chat with us, Heather. We are super-excited to learn about your new book for kids on apraxia, specifically siblings. Let’s start by getting to know you a bit.
Thank you for having me here. I am delighted to share my passion for helping other families who are experiencing CAS.
L4K: First of all, you are a busy mother of four—one of which has CAS. Can you tell us a little about the family you are raising and how they have accepted your child with apraxia?
H.Z.: I certainly can, Leslie. I am married with 4 children, 3 boys and a girl who are currently in elementary and middle school. As far as sibling acceptance within the family goes, the children have never known anything different. We have worked very hard as a family to provide a loving, supportive environment for each of the children to thrive in. This involves lots of communication and individual time with each of them.
L4K: I understand you have a background in sociology. How do you think your education prepared you for raising a child with apraxia? In what ways?
H.Z.: Sociology by one definition is the study of social problems. So being non-verbal in a verbal world is a social challenge. This in turn, leads back to the main definition of sociology which is the study of cultures, more specifically, the study of social relationships between people. Surprisingly, the degree has been very helpful. It has provided a framework of reference, in regards to how various people treat Malcolm. It is so easy to be caught up in medical or therapy worlds and how those institutions relate to a person as compared to providing typical childhood experiences on a regular basis. It is a balancing act, to say the least. It also helps that I have a natural, life long, curiosity to understand what is going on inside a person. What makes them tick? Being able to understand and read between the lines of apraxia research is also a benefit. These skills enable me to be a better advocate for all of my children.
L4K: How did you dream up the idea to write a book for children about apraxia? I am assuming it all came to you as a mom…but maybe I am wrong?
H.Z.: I didn’t dream this up; I LIVED it. [chuckle] When Malcolm was first diagnosed, I had a very verbal 5 year-old, a 1 year old, and was pregnant with our 4th child. My husband was out of town quite a bit for work, so things were beyond crazy in our house. It didn’t help matters that the extended family was convinced that Malcolm would simply “grow out of it.” I looked and looked for a book to read to my 5 year old about what it was like to have a non-verbal sibling. So, I finally took the advice of author Toni Morrison, Pulitzer Prize and Noble Prize for literature winner who said, “If there is a book you really want to read but it hasn’t been written yet, then you must write it.” “hi, My nAMe is MiLLY” is the direct result.
L4K: I have to ask about the title—specifically it’s appearance in upper and lower case letters. Was this intentional on your part? And if so, can you share the significance? Funny you should ask, Leslie. The book, “hi, My nAMe is MiLLY” is written from 5 year old Milly’s perspective. Yes, it was intentional and the primary goal is to remind the reader that this is a book from five year old sister Milly’s perspective.
L4K: What do you think siblings of children with apraxia struggle with the most?
H.Z.: I think the siblings of apraxic children struggle with many of the same issues of neuro-typical children. This is not an inclusive list by any means: Who does Mom or Dad love more? Am I getting my share of the attention? Are they interested in me? In addition to, there are other themes that have come up in our experience; such as, the feeling of protectiveness towards the CAS sibling, more so than the others.
L4K: How can siblings work with one another in the day-to-day struggles of CAS? Do you see them as an instrument in the overall resolution of the speech disorder. How have your own children worked with your child?
H.Z.: Leslie, I firmly believe that the immediate family is the first and best teacher of our children. The siblings of children with apraxia, have a monumental task. They not only teach each other the typical things, they are also responsible for giving the apraxic child their first examples of interpersonal communication. The siblings provide a source of strength and also may act as interpreters, when interacting with children outside of the family. The siblings are instrumental to each other in developing friendship skills. The siblings also have the ability to bring speech therapy into play on a peer level basis. What I mean by this is that the siblings can embrace ‘therapy games’ as regular play. They can be the informal follow-through to regular therapy. One of our speech therapist’s said that the younger sibling of a CAS child pushes more than she can pull in terms of developing speech. Several examples of how siblings have incorporated therapy into play are given in the book, “hi, My nAMe is MiLLY.” [this image from http://www.sheknows.com/parenting/articles/847367/middle-child-syndrome, to represent siblings]
L4K: What advice would you give to a parent(s) just learning of their child’s diagnosis?
H.Z.: Advice is easy to give, but hard to take. I think back to what I would have liked to have known when our journey started. First, remember this is a marathon, not a sprint. It will take time. There will be successes and struggles, try to remember to look at the forest and not the trees. Educate yourself, so that you in turn, can educate others. Make time for each child to have one on one time with their parent(s). Make time for your spouse! Read to your child(ren), even though your CAS child may not respond with the same verbal cues as the other child(ren). Don’t assume that they do not understand the story. There is an amazing person on the inside. Don’t sell them short.
Wow! Thank you, Heather! That was truly empowering. We wish you and your family much success with your book.
**WINNERS ARE: Tori S. of Georgia and Lorrie Mc of Ontario Canada. Thank you ALL for your comments and loyal readership***
Now, it’s give-a-way time! Heather has generously offered two complimentary copies of “hi, My nAMe is MiLLY” to be given away to two lucky blog readers. Here’s what you need to do: Leave a comment either on this blog or by dropping me a line at firstname.lastname@example.org. The subject line: Milly. Your email needs to say how your family can benefit from the book. Sorry, but Facebook comments will not be accepted. Contest runs Monday, March 25th thru Friday, March 29th at 5pm. Names will be drawn at random. You will be contacted by email if you are the winner(s). Kindly respond quickly with your mailing address, otherwise another name will be drawn. Your book will mail from Minnesota via US mail.
Congratulations to the Winners! Thank you all so much for the nice comments!
And thank you for the opportunity to host the give-a-way, Heahter!!
My almosy 4 yr old son is an only child however, we daycare my 4 year old neice everyday and she has been a huge helper in his speech progress at home. I think this book would reinforce that. She is very protective of my son. She is also a great little teacher. Yesterday she was helping him with his A, B C’s. So cute.
Thanks, Melody! I will add you name to the drawing right now…best of luck.
My younger daughter has Apraxia and this book would be a perfect read for my 6 year old daughter. My 6 year old is often an interpreter, protector, play partner & role model during therapy sessions. I think this book would legitimize many of my daughters feelings!! Thank you for taking the time to write it. Hope I win 🙂
Hi Suzy! Thanks for reaching out. Adding your name to the drawing now…best wishes to your sweet daughters. Good luck!! Stay tuned for Friday’s annoucement.
I would love a copy of this book. I have 4 little ones – 11, 8, 5, 2.5. My youngest has CAS.It is a daily struggle, but his siblings are amazing when it comes to helping their little brother learn and communicate. I think this book would be a great addition to our library!
Melissa! So glad to hear you have such wonderful older children to take your littlest one under their wings. I’ll enter you in the contest. Thanks for your interest and GOOD LUCK!!
I would love a copy! I have four children (5, 4, 2, 3 months) and my oldest is a girl with CAS. We’ve been in speech therapy since she was 2.5 when I just had a feeling that she had CAS even though her therapists weren’t on board at first. Now we have a great team that works with her several times a week and I’m so thankful! Love your blog – I just noticed that you are shipping from MN – we are up in Duluth!
Sarah–wow–you sure have your hands full!! I appreciate your busy life and am happy to add your name to the raffle. We lived in Northfield for a time but now reside in Chicgaoland. Heather Ziessler, author of “MILLY” lives in the cities and she will be mailing the books out. Good luck!!
I am so excited that a book for siblings is now available. I am very involved with the group NWO Apraxia Support and I would love to be able to share this book with our entire group. Thank you for doing this.
Excellent, Beth! Kudos for your outreach. Adding your name to the raffle! Stay tuned. Winner’s drawn Friday, March 29th.
Me and my family are very new to the diagnosis of apraxia. We have been doing therapy for speech with our son since he was just over two and now just turned 4 in January. We are in the process or learning what we need to do and how best we can support him as parents. We also have two other children, one older then him and one younger. At this point, I am trying to find all the resources and information that I can and I was actually going to purchase the book speaking of Apraxia which was recommended to me recently as and excellent read.Based on what I have seen so far, this new book looks like it will provide us with something to relate to and help us as a family in dealing with Apraxia.
Hugs to you, Lorrie!! I know this diagnosis can be overwhelming at times, but it sounds like you are on the right track in trying to find all available resources–really, knowledge is power. Thanks for the comment and sharing your journey with us. I am entering you into the contest now…stay tuned when we draw winners this Friday, March 29th.
I love the simplistic language so both siblings and children working with apraxia can connect to the text at any age. My oldest son and I have had numerous discussions on how his brother is not getting more but what he needs. What a wonderful book that really hits home. Thank you Heather!!
As an SLP, I am so excited to have a book I can share with parents so that they can help their kids understand apraxia!
YES! It looks like a great book for working with the whole family on CAS. Entering your name in the give-a-way now, Merrie!
What a sweet book! Jake has 2 older brothers who are the best role models I could ask for. Yes, these siblings are so influential in our apraxic child’s life & face their own set of challenges in dealing with this disorder. This would be a great book for us to have in our library!
Thank you for your comments! So glad Jake is blessed with two older brothers who can help along his journey. Entering you in the contest…stay tuned.