A Book Review of “Beyond the Diagnosis” by Amy Mattson

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Fellow special needs parenting blogger, Amy Mattson, wrote a wonderful book called “Beyond the Diagnosis” that quite literally had me feeling like I found someone who “gets me” – who understands and articulates so masterfully the emotional, physical and spiritual peaks and valleys of being a special needs parent.

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The book is divided into three parts that represent different stages in the special needs parenting journey.

Part I: An Unexpected Path focuses on when your child is first diagnosed and examines the multitude of emotions that accompany hearing those words.

Part II: Adjusting to Your New Reality aims to help the reader adjust to the unexpected new reality one faces as a parent of a child with special needs. 

This section also addresses some additional struggles that one may face as they progress through the journey of special needs parenting.

Part III: Thriving as a Special Needs Family incorporates all of the lessons from the initial stages of the journey to help the reader learn to thrive as a special needs parent.

What is really special about this book is that Amy shares her own personal journey of parenting two children with special needs.

She has the unique perspective of  being a mother to two children with different needs: one child with physical needs as well as a child with unseen disabilities.

In addition, Amy’s story includes the fact that her daughter was adopted and all of the accompanying emotions of learning that the child she adopted has a physical disability that will require lifelong care.

While the book shares many personal stories of struggles and triumphs, it also includes action steps at the end of each chapter to help the reader think about and work through any issues in their own personal journey of special needs parenting.

One theme resonates throughout “Beyond the Diagnosis” that really struck a chord with me – that the cycle of heavy emotions that often feel too much to bear are a necessary part of the grieving process for special needs parents.

Amy skillfully shares her own personal experiences with grief – over the loss of her dreams of what family life would be like, over never having the milestone celebrations that typical parents share on social media, and even over the loss of friendships that could not withstand the shift in priorities that we experience as special needs parents.

As a fellow special needs mom, I read about her experiences and saw parts of my own story reflected in them. While feeling the sting of those losses, I also was feeling a sense of camaraderie and even hope that I was not alone in my own struggles.

This is the beauty of “Beyond the Diagnosis” – we can read about Amy’s experiences, share in her struggles, and aspire to work through the process to reach a point where our own story becomes one of joy, gratitude and thriving in our role as special needs parent.

Amy explores the topic of isolation that many special needs parents feel. This is a theme that is all too common and one that I have written about before.

RELATED:  HOW TO COPE WITH SPECIAL NEEDS PARENT ISOLATION

As mothers, in particular, we are naturally very skilled at being caretakers. When our children have special needs, we thrust ourselves into this role to the point of being consumed with research, seeking answers and solutions for our child’s disability.

In the book, Amy describes how she lost herself to the role of caretaker, which resulted in total burnout and her own mental health decline.

This is an all too common phenomenon amongst special needs moms. We put ourselves last on the priority list and inevitably it catches up with us.

In Amy’s case, it resulted in serious depression that rendered her unable to provide the quality of care she aspired to in the first place.

RELATED: HELP AND HOPE FOR THE DEPRESSED SPECIAL NEEDS PARENT

Two emotions that Amy explores that lead to negative feelings and possible depression and other mental health struggles are feeling angry and guilty.

This cycle of feeling angry (at God, at ourselves, at typical families) often leads to a sense of guilt. However, Amy reminds us that feeling angry does not mean that we love our child any less.

The book does an excellent job of reminding us as special needs parents to allow ourselves to feel these emotions. It’s important to acknowledge them, but not get stuck in a pattern of the feelings consuming us.

We often get stuck in comparison traps and feel the sting of our children not progressing and meeting the same milestones at the same time of their typical peers.

Amy illustrates how this can prevent us from embracing the blessings of our new reality as special needs parents and keeps us stuck in the trap of not feeling like “enough”.

Part of working through the difficult emotions is letting go of the expectations you once had for your ideal family.

Instead of being a people pleaser and trying to live up to everyone else’s expectations, Amy suggests becoming an advocate for your child and educating others as a way to embrace your new reality.

In the final section of the book, Amy takes all of the struggles, lessons, hardships, and tough times that she shares and reframes them as a newfound purpose and a way to actually learn how to thrive as a special needs parent.

I appreciated how the book recognizes and encourages parents to feel the tough emotions but also stresses how it has no bearing on the love for our children.

We feel enough guilt as special needs parents, but we can acknowledge our feelings and not allow them to consume us.

The key takeaways from this section of the book were to make our marriage a priority, seek opportunities for respite, give our children breaks (just like we should do for ourselves), celebrate all of the victories, and get out into the world and experience life in our communities.

This was by far my favorite part of the book as I feel like this is the phase that I am in on my journey as a special needs parent.

Yes, I still have days of feeling hopeless and angry or depressed. Yes, I still fall into the comparison trap.

However, over a decade into this journey, I am now more able to experience joy. I recognize the blessings and celebrate victories that may not seem like much to others on this journey.

As suggested in the book, I have sought out people in my life who “get it” – found a tribe of supportive people around whom I can be vulnerable and honest.

I have learned that taking breaks and respite is key to my own well-being. It’s still not easy to find ways for self-care or date nights with my husband. But we are more intentional about it now.

And, as Amy suggests in the book, we now get out into the world more as a family. We lived a long time in defense mode because it was just easier to stay in our home where it was safe and familiar.

But, like Amy, I don’t believe that is our purpose. I believe that our purpose is to experience life within our community – to share our gifts with others and to allow others into our world.

No matter what stage you are in your special needs parenting journey, Amy’s book “Beyond the Diagnosis” is a relatable narrative that sheds light on the depth of emotions experienced by parents of children with disabilities – both physical and hidden. 

In addition, it offers hope and provides action steps to help special needs parents work through the grieving process and learn how to thrive in their role.

This book is a MUST READ for parents of children with special needs, but it is also an important message for others to learn the realities of caring for children with special needs

You can grab the book “Beyond the Diagnosis” on Amazon and be sure to check out Amy’s blog – Raising the Extraordinary