Special Needs Parenting

Book Review: Beyond the Diagnosis by Amy Mattson

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I was blessed to receive a review copy of the book Beyond the Diagnosis: The Path to Thriving as a Special Needs Parent by Amy Mattson. Amy is a fellow special needs blogger whom I’ve known for quite some time via the internet, and I knew that her book would be a blessing. This book exceeded my expectations.

The book is divided into short, easy-to-read chapters grouped into three main sections:

  • An Unexpected Path – which covers the diagnosis stage
  • Adjusting to Your New Reality – which covers a lot of the darkness that special needs families face once they get over the shock of a diagnosis
  • Thriving as a Special Needs Family – which covers how to move forward and embrace life

One of the biggest strengths of this book is that Amy faces the challenges and blessings of being both a mother to a child with physical, visible special needs (cerebral palsy) and a mother to a child with invisible special needs (ADHD and Autism).

I know that I personally have felt – well, I’ll just say it – like a fraud. Like I have no business running a page called Special Needs Survival when my son “only” has ADHD and a mood disorder. I did not expect to feel SO incredibly validated throughout this entire book about the hardships that all special needs families face, including those who have kids with invisible disabilities.

“As a mother of children of children with both seen and unseen disabilities, I can honestly tell you that one is not any more difficult than the other. Each will take you down a path that can be tough to navigate at times.” – Introduction

I especially related to so much of Chapter 2, Encountering Unseen Disabilities, which covers the period when Amy’s son Gavin was diagnosed with autism. While Gavin’s diagnosis came a few years later (at the Kindergarten age) than our son’s diagnosis did (at the preschool age), her experiences very much mirrored my own:

“I feared every phone call would be from the school telling me to take him home. . .Was he feeling ignored and crying out for attention? His home environment was safe, consistent, and comfortable. He was well provided for. Yet I was convinced I had failed him in some way as his mother.” – Chapter 2

Beyond the Diagnosis: A Book Review by a Special Needs Mom

At the end of Chapter 2, she again brought validity to the hardship of what she calls “unseen disabilities”:

“I am in the unique situation of parenting children with both seen and unseen special needs, and I can honestly tell you that one is not easier than the other. Both have their challenges. Both are equally emotional. No matter your child’s diagnosis, we all go through similar inner battles as we walk down the path of a special needs family learning to thrive.” – Chapter 2

Another great strength of this book was in bringing validity to the emotional side of special needs parenting and the grief that comes with it. Amy weaves these truths beautifully into nearly every chapter, but she also devotes a whole portion of the book to this in Chapter 4, “Learning to Grieve the Diagnosis.”

Beyond the Diagnosis: A Book Review by a Special Needs Mom
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She also brings a lot of validity to the ebbs and flows and circular pattern of this process:

“The unfortunate reality of grieving the diagnosis is that it never really ends. I can tell you that in time it gets easier; but there will always be some level of grief.” – Chapter 4

In Chapter 5, “Avoiding Isolation,” she talks about the pain of isolation and how to navigate relationships such as friendships, church, and family:

“Sometimes it feels like I live in a snow globe. I can look around and see the world moving around me. I see other families growing, laughing, and enjoying life while our special needs world is encased in glass, separating us from what’s happening around us. I know I’m not the only parent of a child with special needs who struggles with this.” – Chapter 5

In Chapter 6, “The Dangers of Neglecting Yourself,” Amy turns inward to discuss her own struggles with loss of personal identity, severe anxiety, and depression to the point of emotional breakdown. I related to this chapter SO MUCH as I have been there so many times:

“I was apathetic because of the depression, and I didn’t care about my declining outlook on life. The only emotional that felt real was the guilt. I felt guilty for bringing this added layer of complication into our family. I felt guilty for withdrawing as a wife and mother. I felt guilty for the inability to meet the needs of my family while turning the tables to address my needs.” – Chapter 6

She also talked about how her struggling emotional health impacted her faith, another aspect of special needs parenting to which I can greatly relate:

“It was a difficult time to put my faith and trust in God, or feel safe in reaching out to our church family. . . In my head I knew I needed God, but my heart was hurt. I felt spiritually dead. I knew God could help if I asked Him, but I was too angry to even pray.” – Chapter 6

She did the BEST thing in this situation: she poured her heart out to God in a beautiful written prayer, a portion of which said this:

“I want happiness and joy but feel like I can’t just choose to be joyful because it would feel fake, knowing I have all these unresolved feelings.” – Chapter 6

If there’s one area I really felt this book was weak, however, it was at the end of this Chapter. It seems that Amy poured her heart out to God, saw a Christian counselor, and then was pulled out of this breakdown she was in. I felt like she wrapped this chapter up with a neat little bow:

“It all came out, and I was able to pick up the spiritually broken pieces of my life as well. Because of God’s grace, my head and heart are now whole and restored. Now, on this side of depression my faith is stronger than ever. I have found new purpose and a stronger sense of God’s calling on my life.” – Chapter 6

Honestly, I felt discouraged when I read this. I felt myself thinking, “I wish it were that easy…” I feel like my journey is one of peaks and valleys in which I climb out of the valley only to fall right back in. Even with medication, counseling, and solid spiritual teaching in a supportive and loving church, I cannot say these things. I find myself picking up spiritually broken pieces of my life only to have them broken over and over again. Wholeness and restoration are words that I think of more in terms of a journey, rather than a completed event. I have days I feel like my faith is stronger than ever, only to reach a point days or weeks later where I’m struggling all over again.

While Amy provides a lot of validity to the emotional struggles of special needs parenting and it being cyclical and repetitive, I don’t feel like she gave the same validity to the spiritual struggles. It seemed more like a one-and-done crisis of faith in her life that she got over quickly. Perhaps that was not her intention, and she could explore this aspect more in future posts on her blog.

I enjoyed Chapter 7, “Becoming an Advocate.” Again, she validated how it’s okay to talk about the hardships of special needs parenting and how that doesn’t mean you love your children any less. I personally have been chided by people I looked up to on more than one occasion for not putting negative things about my kids on my blog or social media, and that really hurt.

“I challenge you to remember that telling the truth is not a reflection of your feelings toward your child. Don’t feel guilty about acknowledging the hard facts.” – Chapter 7

In Chapter 9, “Embracing Your New Reality,” Amy talks about the trap of comparison and how it can often lead to more grief:

“The most difficult pitfall I’ve experienced, the most serious obstacle to my embracing our new reality, is comparing our children to typical children.” – Chapter 9

She spends most of her time in this chapter talking about the obvious differences between her daughter Mikalya, who has cerebral palsy and cannot walk or even sit up unassisted at the age of 9, and typical children.

If I have one more criticism of this book is that she did not really spend that much time on how this impacts how she feels toward her child with unseen disabilities. Also, she speaks to this as a parent of two special needs children (“our family” versus “other families”).

“We want to be able to experience what other families are experiencing. . . Those feelings make it so hard not to compare. But I caution you: it has been said that comparison is the thief of all joy. Once we start to compare our children to the children of others, we lose sight of the blessings God has given us in our children.” – Chapter 9

This is her reality, so this isn’t a criticism. But I found myself wanting more – a discussion for families who have BOTH typical and special needs children. This comparison trap is even harder to avoid when it falls within your OWN family. I think it’s even harder to not compare your kids to their siblings than it is to not compare them to kids from other families.

For me, Little Brother – while such a JOY and a reprieve from the intensity of special needs that his big brother brings – is also often the trigger of my deepest grief. Our situation is also different in that our children are biologically related (whereas one of her two is adopted), they are the same gender (Amy has one of each), and their birthdays are the same month. A lot of the anger and grief triggers for me fall along timelines and seasons when memories of holidays, birthdays, etc. make it nigh impossible not to compare milestones, capabilities, and developmental progress. Sometimes it’s as simple as a laugh, a facial expression, or a tilt of the head that sends me into a grief spiral when I am thrust into a painful memory due to their similarities, and then vast differences.

Also, when Little Brother DOES begin to struggle behaviorally – which he has a lot in the last year – that becomes a PTSD-esque trigger for me in which I am filled with panic that it’s happening all over again. Is it really? Or is this just more of the grieving process? These are questions I’m still working through. As stated above, I think that Amy wasn’t able to really cover this because it simply isn’t her reality.

Chapter 10, “Your Feelings are Valid,” was in some ways a redundant echo to Chapter 4, “Grieving the Diagnosis.”

Beyond the Diagnosis: A Book Review by a Special Needs Mom

“One of the first areas to be intentional is recognizing your feelings and not letting yourself feel guilty for having them. . . You’re human, and you have limitations. Recognizing the hard things has no bearing on your love for your children. The problem with believing this lie is that you will constantly be at battle with yourself, trying to suppress the guilt you feel for acknowledging them. When you understand these two are not mutually exclusive, you will be able to let yourself recognize your feelings as valid without feeling guilty.” – Chapter 10

This chapter continued with more of the same. All WONDERFUL truths that we all probably need to hear over and over and will still struggle with anyway, but I did begin to feel like the same thing was being said over and over in multiple ways.

Beyond the Diagnosis: A Book Review by a Special Needs Mom

Beyond the Diagnosis: A Book Review by a Special Needs Mom

Chapter 11, “Your Marriage Must Be a Priority,” I didn’t relate to as much either. Again, this isn’t a criticism of the book as much as it is just a matter of Amy and I having very different lives. While she has two special needs kids, I have one special needs kid and a special needs husband. That brings another whole dimension to our challenges that Amy simply just couldn’t speak to, but everything she mentions in the chapter is great advice for couples who have a more “typical” marriage relationship.

I loved what Amy had to say about therapy breaks in Chapter 12, and Chapter 13 was beautifully written in regard to how much we need to embrace the LITTLE successes in life.

“Yes, there was a loss that I needed to grieve. Nevertheless, I needed to learn not to let that loss overshadow everything she was achieving. This is part of being a special needs parent. Grieving the hard things from time to time is necessary if you’re going to thrive on your journey. However it is important not to let the losses consume you. Grieve, then open your eyes to the beauty that is happening within your child.” – Chapter 13

Beyond the Diagnosis: A Book Review by a Special Needs Mom

Overall, I loved the book. It was an easy read, and very relate-able. It was also a blessing to have my eyes opened just a little bit further to the realities of parenting a child with physical disabilities – something with which I have no experience.

I thought that Amy did a wonderful job of speaking to the emotional side of things. I would much rather have a book be redundant in this regard than to have it ignore this HUGE side of grief, depression, and emotional struggle. I felt incredibly validated in my own journey – from the introduction to the last chapter!

(It was also very well-written and edited. I’m a grammar nerd and it’s always a joy to not be distracted by grammatical errors!)

If you have a chance to read this book, I highly recommend it! Thank you, Amy, for your vulnerability and your amazing contribution to the special needs life!

You can buy the book on Amazon or Barnes and Noble. You can find Amy over at her blog at Raising the Extraordinary.

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