Book review: From the Heart: On Being the Mother of a Child with Special Needs

I first read From the Heart: On Being the Mother of a Child with Special Needs (edited by Jayne D.B. March) just after Ruby’s first birthday. I was looking for the understanding and support that only another mother of a special needs child can offer. The book was so amazing that I have turned to it again several other times in the past five years.

While reading this book, I cried, I laughed and I felt renewed strength. This book is like having a support group in your own home. With topics that range from being heard and feeling understood to coping and healing, From the Heart is full of affirming stories written by nine real mothers. The children being raised by these mothers have a variety of special needs, including autism, down syndrome, cerebral palsy, ADD and multiple disabilities.

This book is perfect not only for mothers of special needs children, but also for family members, healthcare professionals and educators who want to step into the shoes of a mother raising a child with special needs and gain a better understanding of what we go through. So, after you read it, pass it along to someone else — but make sure you get it back so you can re-read it when you need that extra support.


Five tips for getting some “me” time

One of the most common statements that I hear from parents of special needs children is that they have very little free time to care for themselves, to nurture their relationships or just clean the house. No doubt, running from therapy to physician appointments – and for some parents, like me – working 40+ hours per week, can surely take its toll on even the strongest parent.

Here are my top five tips for sneaking in some much deserved “me” time.

1. If all else fails, breathe.

When you’re feeling stressed out and frazzled, make a conscious decision to take a few deep breaths. Close your eyes if you can, and focus on your breath as it comes in through your mouth and out your nose. As you breathe out, imagine that you are breathing out your frustrations. Feel your stress start to melt away – or at least become more manageable. Little “me” moments like this add up and contribute to your overall wellness.

2. Get your priorities straight.

If your life is anything like mine, your to do list is a mile long: Do laundry, pay the bills, go to the grocery store, call that doctor, schedule that appointment…the list goes on. It’s easy to get overwhelmed with life, let alone the amount of work that raising a special needs child requires.

Here is how I prioritize my to do list.

  • Write down every single thing you have to do this week, from the smallest of chores to the biggest of tasks. You can do this on paper, a mobile phone or your computer. I personally love using Google Docs because I can access my to do lists from any computer with Internet access and my mobile phone
  • Next, break down your big tasks into steps. For example, organizing your child’s medical records into a binder is a huge, overwhelming task. Instead, break that task into a few steps, like: Call hospital records department, make copies, buy a binder, etc.
  • Now, assign due dates for each task
  • Once your list is complete, analyze each task and determine if its due date is realistic. Can you tweak some non-urgent deadlines to give yourself more free time? Be honest with yourself and adjust your due dates as necessary

The method I’ve explained above will surely help you get organized. However, the most important part of prioritizing comes next: determining if you need to cross some of those items off your list altogether. For example, after Ruby was born, I wanted to volunteer at the NICU and help other parents through the NICU experience. I went to the volunteer orientation and left feeling so excited that I was going to make a difference. But, once I started volunteering, I quickly realized that it was making me more stressed out than ever. I felt that I was letting the NICU down because I couldn’t meet the level of commitment that they needed, and because I was so stressed, my efforts brought me no joy. So, I made the decision to free myself of that commitment. In its place, I joined an online forum and found that I could make a difference in other parents’ lives by posting supportive comments there at my leisure.

3. Ask for help.

This is often the hardest thing for a parent with special needs child, but it’s often the most important step toward being a more balanced person and parent. For the first couple years of Ruby’s life, I didn’t believe or trust that anyone could possibly meet her needs as well as I could. I mean, after all, I was the one who had spent hours with her in the NICU, knew all of her medical needs and could decipher her different cries. However, the weight of that responsibility was literally crushing me from the inside out. I was stressed, on edge and utterly exhausted. At that time, I didn’t have any family living near me and my funds were low. Then, one of Ruby’s school therapists told me about a program that offered funds for respite care.

I’ll admit, the first time I used respite care, I was a nervous wreck. I called the poor respite worker about 10 times (and I was only gone 45 minutes). When I got home and realized that Ruby was still alive (and happy), my confidence grew. I set up a regular time each week for respite care and I used it to run errands and do nice things for myself. I always came home a happier and much more patient mommy. Those short breaks kept me going when I needed it the most.

If you’re not yet ready to leave your child with someone, consider getting help with other things that steal away your “me” time, like housework, cooking and yard work. These are easy things to pass off to a maid, the neighbor boy or a helpful family member or friend. If you’re not able to pay someone to help, some states offer support grants to families with special needs children. The money for these grants can be used for respite care and other services relating to your child’s disability (in my state house cleaning qualifies). Visit your state’s disability Web site for more information.

4. Talk about it (and be real).

Raising a special needs child is no cakewalk. However, I talk to so many parents who, for an array of reasons, refuse to admit that. Maybe admitting that it’s not always fun makes parents feel like a failure or like they’re betraying their child. But let me tell you, admitting that it’s hard can be the most freeing thing you ever do.

When Ruby was in the NICU, I refused to show the nurses or doctors any emotion at all. I refused to publicly acknowledge that it was a hard situation. Despite the direst of circumstances, I stayed strong and I stood by my daughter’s side with a smile on my face. For me, showing emotion meant showing weakness. If I cried, would they worry that I was unstable or that I couldn’t take care of her? It seems silly now, but that’s how I felt at the time.

When she came home from the hospital, I quickly realized that in the comfort of my own home, I could not contain my emotions any longer. With more than 50 physician appointments in the first three months of her life, a mere two hours of sleep at a time and all the other responsibilities that go along with a newborn, I was losing it.

It wasn’t easy to tell someone, “This is hard.” And I realized that parents of typical children don’t always get it. To get the emotional support I needed, I joined some online forums for special needs parents. I opened up in a completely honest way about my difficulties to people who actually understood and I freed myself from “holding it all in.”

If you don’t have a friend or family member who understands what you’re going through (or if you’ve exhausted them as a resource), I urge you to find an online or in-person group with other parents of special needs children where you can discuss your difficulties. Or send me an email and I’ll be happy to share my favorite forums and online groups with you!

5. Go to bed.

When you are tired, your emotions are raw, your energy level is circling the drain and you are basically operating on autopilot.

I used to stay up until midnight tidying up my house, answering personal emails and doing other tasks that seemed important. However, when the alarm went off at 5:30 a.m., I was exhausted. I was spent before the day even began.

Today, I make it my mission to put Ruby to bed at 7:00 every single night so that I have a good three hours to accomplish my goals before my strict bed time of 10:00 p.m. Not only is Ruby happier because she gets a complete night’s sleep, I am able to accomplish everything on my to do list and feel well rested. And when I’m rested, I’m more productive at work and at home, not to mention I’m a better mom because I have more energy and patience.

Tonight, I urge you to go to bed earlier. Shut off your mind, forget your to do list and just sleep. Whether it’s 10 minutes or two hours earlier than normal, climb into bed and let your worries fade away. I guarantee you will thank yourself in the morning.

As a parent of a special needs child, do you have any tips for sneaking in “me” time? Please leave your comments below.