The Power of Imperfect Parents: Practical tools to parent your child with disabilities

By Lynda Drake

Parenting children with disabilities and other diagnoses can be challenging. In this book, Lynda candidly shares her experiences raising three children who have various disabilities and diagnoses, including Down syndrome, diabetes, ADD, dyslexia, life threatening allergies, mood disorder, severe behaviors

• Language: English
• Publisher: ReadersMagnet LLC
• Release date: May 22, 2023
• ISBN: 9781960629944

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The Power of Imperfect Parents: Practical Tools to Parent Your Child with Disabilities

Copyright © 2023 by Lynda Drake

Published in the United States of America

ISBN Paperback: 978-1-960629-93-7

ISBN Hardback: 978-1-960629-95-1

ISBN eBook: 978-1-960629-94-4

All rights reserved. No part of this publication may be reproduced, stored in a retrieval system or transmitted in any way by any means, electronic, mechanical, photocopy, recording or otherwise without the prior permission of the author except as provided by USA copyright law.

The opinions expressed by the author are not necessarily those of ReadersMagnet, LLC.

ReadersMagnet, LLC

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Book design copyright © 2023 by ReadersMagnet, LLC. All rights reserved.

Cover design by Ericka Obando

Interior design by Don De Guzman

This book is dedicated to my parents, grandparents, husband, and children, who have taught me about parenting, love, acceptance, and inclusion.

FORWaRD

By David Henninger

The title of this book, The Power of Imperfect Parents, might surprise a few readers. It contains two words, ‘power’ and ‘imperfect’ that might be perceived as contradictory. The goal of many of us is to be a ‘perfect’ parent and the word ‘power’ might mean total control.

The reader does not have to read too far into this book to begin understanding that the title is aptly named. Through very candid lens, the author, Lynda Drake, has shared her direct experience of parenting her three children, each of whom has dealt with challenges that can be labeled as disabilities. Seldom are we able to share the experience of having a parent detail the ups and downs of living in an uncharted world where each child has a different disability that presents its own set of unique challenges to parents and the siblings involved.

As someone who has had the honor of working for Bayaud Enterprises and having an office that adjoins hers, I can attest that Ms. Drake is the ‘real deal.’ When you read her book, you will see that the person who has written it is sharing real life trial-and-error experiences that offer life affirming lessons that all of us can incorporate into our lives.

The word ‘love’ is used so commonly that it is easy to brush it aside as a cliché. But, in this book, the genuine power of ‘love’ comes through time and time again. The intimate look inside the dynamics of a family facing all of the trials/tribulations of parenting have seldom been expressed so openly. Any person who has been the parent of an individual with a disability will be able to gain new insight and practical tips to make the journey feel less lonely.

By adding the interviews of other individuals who live with a disability and what they felt were the important factors in their own parents that did or didn’t work for them, Ms. Drake informs us even more about the vital role parents play in the raising of children who have a disability. This book is not just for parents who have a child with a disability, but for all people who have interactions with those who are living the experience of parenting.

Indeed, when the reader finishes this book, the title makes ‘perfect’ sense.

David Henninger

Executive Director of Bayaud Enterprises

Introduction; WHY NOT ME?

Many people who write books ask themselves, Why me? Am I worthy to share this story or information? When the book is about parenting, which has a way of making all of us doubt ourselves, especially when it’s parenting children with special challenges, I really questioned myself.

I will admit I am an imperfect parent. Indeed ‘perfect parent’ is an oxymoron. There is no way to be a perfect parent; there are too many variables with each one being a judgment call without a definitive, perfect answer. I decided to change the question to, Why not me? I believe that the experiences I have been through, my willingness to be authentic and show you all who I am, my vulnerabilities, my failures, and my strengths, just might guide you on your own path — give you a tool that may illuminate your path, show you that you can do this and remind you that you can be the parent you hoped you would be.

There have been times when parenting my children has felt like it was too difficult. There was too much to do and too little time, too little of me. Being a working mother is one of the hardest jobs you can do. I have worked for most of my children’s lives except for about three years when they were babies becoming toddlers. I worked in the stock brokerage business until our oldest daughter, Alli, was 13, and our twins, Alex and Katy, were 6 years old. In this field, punctuality is critical, and being at work every day, mandatory. Their father, my husband Fred, was a printer during this time. It was also imperative that he was at work and on time. This was challenging because Alex has Down syndrome, at that point his only diagnosis. His sister, Alli, had been diagnosed with ADD and dyslexia, but his twin sister had not been labeled with anything yet. I felt like a failure everywhere. I felt like a failure at work because of the time I had to miss it because one of the kids was sick or Alex had therapy or other treatments that were required. I felt like a failure as a mother because I couldn’t be with my children as much as they needed me.

It was at this time when our kids were 6 and 13, I was finally able to quit my job at Schwab and work from home. This was not a good financial decision, (we ended up filing bankruptcy eight years later), but it was a much better decision for my spiritual and emotional well-being. We were fortunate that I had that option available. I was only able to work from home for two years before going back into the workforce in a completely different field as a job developer, helping people with disabilities find jobs. This was a job that I had felt called to do many years before (more about that in the chapter on employment), and I was grateful for the opportunity to try it.

As the years rolled on, each of my children picked up new diagnoses. For Alex, he added type 1 diabetes, autism, sleep apnea, and anxiety/mood disorder. And in high school, Katy discovered she had severe, life-threatening allergies to almost all types of fish, shellfish and marijuana, as well as pain issues in her back and other places. Life got more complicated. In the times when it felt too hard, some angel would tell me I was doing a great job as a mom. That would help me see that maybe they were right even if I didn’t feel that way. Maybe I could do this parenting thing. I’m grateful my husband and I did it and are still doing it together. We know how lucky we are to have remained life partners, co-caregivers, and best friends. Not always easy.

These days, our children are older but that doesn’t mean they need us less. Alex requires constant care. We are fortunate that Fred is now paid to stay home with him through a program called CDASS which stands for Consumer Directed Attendant Support Services, pronounced c-dass. This program allows us to choose who should be paid to care for our son.

I work for a non-profit agency called Bayaud Enterprises which assists people with disabilities and those experiencing homelessness find work. I am a job developer, program manager, group facilitator, and speaker for them. As a job developer, I have assisted over 1000 individuals with various challenges find jobs and the tools they need to achieve whatever success means to them.

There is a chapter in this book that will show you how to guide your child to be more employable. I have learned a great deal during the past 20 years about what it takes to be successful in the workplace and the qualities employers look for in employees. I hope these tips can assist with preparing your child for employment in the future. Having a job can be life-changing for individuals with disabilities, as it can for all of us. The way we parent them can make a huge difference in whether that is possible.

In this book, in addition to talking about employment, we will also go over how to change our expectations, not only about what our children will accomplish in life, but how our lives will change. If we allow it, most of the changes can be positive and all of the changes hold amazing lessons for us. One of the greatest lessons we learn from our kids is unconditional love which we will talk about.

There is a chapter on how to teach our children the importance of disappointment and failure, how to deal with doctors and other professionals, how to keep food a positive experience and how to balance our attention between all our children.

We will discuss important topics regarding friendships, how to talk to our children about sex and money, and what they teach us about spirituality. There is a chapter on how to handle severe behaviors, how to practice self and relationship care and information about various disabilities, including Down syndrome, ADD, allergies, mood disorder, type 1 diabetes, and more.

This book will remind us that all our children are amazing people who each have their own challenges and gifts. Our children become who they are not only because of the parenting they receive, but also their siblings, grandparents, environment, experiences in life and, of course, genes. We can’t control everything but we can continue to improve how we show up as parents. Give yourself credit for the skills you have even as you strive to do better. It doesn’t serve anyone to beat yourself up.

In our society, there is the expectation that you will be a ‘perfect’ parent. We have been told the importance of raising healthy kids who dress well, are clean, good looking, maintain a healthy weight, are smart, participate in sports, and on and on. But the truth is every child is different and has their own unique way of being themselves. In this book, we will explore more about parenting to the best of our ability. Being able to see the gifts and lessons has helped me to embrace the power that comes with allowing ourselves to be imperfect parents. I am learning to change my focus to be a loving parent who finds the lessons of life, learns to laugh, and let go of what no longer serves me.

For those times when you feel overwhelmed, allow that to be how you feel. Accept it. Accept yourself just as you are. Love yourself just as you are. Then you will be able to release that emotion sooner instead of stuffing it down into your soul and pretending you can do it all. Ask for help. Take a moment; everything doesn’t have to be solved in this moment. As a matter of fact, it is impossible to solve everything right now.

Bite off what you can when you can; deal with that bite and then move on to the next. Take breaks or talk to someone about what is going on in between bites so you can more effectively deal with the chewing of that bite before moving on to the next. Do what you can and don’t beat yourself up. If you are having a really hard time with some bite, ask for help. It is not a sign of weakness but rather an opportunity for grace. When we allow someone into our challenges and allow them to hold our hands while we deal with the situation, we also allow them to have grace in that moment. We learn as parents of our special kids that it is a beautiful thing when we allow people to give and allow ourselves to receive.

There are some new ideas presented in this book. You may not agree with everything and that’s okay. My hope is that this book will guide you to look at things in a new way and give you tools to deal with the challenges ahead. We will learn to look at ourselves and our lives through the lens of laughter, lessons, love, and letting go, so that you and your children become who you are meant to be and realize you are not alone, ever!

EXPECTATIONS IN HOLLAND

After Alex was born, we received a packet of information from Pilot Parents (which is a support group of parents in Omaha, Nebraska, who have children with all types of disabilities). Inside the packet was this essay called, Welcome to Holland by Emily Perl Kingsley, a woman who has a son with Down syndrome. In it, she compares having a child with special needs to planning a trip to Italy. You prepare for it, you plan where you will go, you learn some phrases in Italian, and then the big day arrives. You get on the plane and when it lands, they announce, Welcome to Holland! Expectations change.

You are disappointed; you had planned for Italy after all. Your friends all went to Italy. Then you realize you have a choice: whether to let go of the expectation of Italy and decide to see the beauty of