Friendship & Community,  Special Needs Parenting

31 Days of Supporting the Special Needs Family

October 1, 2014 /
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The Story Behind this Special Needs Series

The story of this series begins five years ago. Kathryn, Sara, and I were young military wives who had met online. We were expecting our first babies – all boys. We commented on bumpdates and nursery pictures and even sent baby gifts to each other.

One after another, we gave birth to our precious baby boys. Our sons’ births were hard, each fraught with complications and emotional distress. Nothing went how we planned. Our connection went deeper as we struggled with things like breastfeeding problems and postpartum recovery.

Beyond recovery from birth, my son, while definitely challenging and high-needs, grew typically according to the standard growth and developmental patterns. He met his milestones like the average child.

But their sons didn’t. And over the next few years I started learning a whole new language because of them.

Feeding therapy, NG tube, IEP, ABA, hypotonia, sensory processing disorder, and eventually…autism.

I have not been the best friend. I have made my share of mistakes. I’ve said my share of ignorant – if not downright hurtful – things. Mothering has been a humbling experience. As I have grown into where I am today as a mother, I have also grown in my understanding of friendship, support, and empathy.

While I have never met either of these women in person, I consider them to be my closest and dearest friends. So when they hurt, I hurt. When they share their struggles of wanting their sons to simply eat or talk…I struggle within myself.

I wonder, “Why is this fair? Why was my son the neurotypical one? Why do they have to suffer while we live our average lives?”

I don’t have the answers to these questions. But I believe that God has had a greater purpose in our friendship. I believe that this series is a part of that purpose.

When our sons were getting ready to turn three, I wrote a blog post called How to encourage a special-needs mom (when you aren’t one) in hopes of encouraging them and other moms like them. It was something that they could share with their friends and family about how they could be encouraged and supported. It was full of some things I had learned through the course of our four-year friendship. This post was such a blessing to them and other moms of special-needs children around the world that it ended up going viral earlier this year. This post has now been viewed over 204,000 times.

Through this post, I met Katie – a sweet mom with such a similar story to Kathryn’s and Sara’s. She too has a boy, just a little bit older than my Ezra, who is also on the autism spectrum.

She and I connected through our writing, then Facebook, then Voxer.

My friendship with her deepened quickly. And then, on the evening of January 14, 2014, she suggested that I expand my post into an e-book.

In that moment, I cannot explain the excitement yet peace that I felt. The immediate feeling of, “Yes, a resounding yes! This is a message that needs to be told. A dialogue that needs to be opened.”

Together – Katie, Kathryn, Sara, and I want to see the walls separating the special needs community from the rest of the world fall down. We want to see bridges built and friendships forged. We want to see churches and communities step up their game to rally around the parents of special-needs children.

Unfortunately, my life this year has not afforded me the time or the means to work on this immense undertaking. I’ve written a few pages in a notebook here, notes on a document here, a chapter on Google Drive there.

In July, I started thinking and praying about doing 31 days this October. I couldn’t seem to hone in on a topic until one morning I thought to myself, “Why not turn the book idea into a 31 post series?”

At first it felt like I was giving up on authoring a book, but at the same time, I felt like this content was so important that it couldn’t wait to be shared until my life magically gave me time to write a book.

So it is with much prayer, planning, and discussion with my closest friends that I open this series, 31 Days of Supporting the Special Needs* Family.

31 Days of Supporting the Special Needs Family

Over the course of the next 31 days, we will be hearing from Kathryn, Sara, and Katie – as well as several other special needs moms and dads. We will be highlighting several different diagnoses (not just autism). We will speak about the intense challenges that these families face (financial considerations, marriage struggles, and more). We will discuss what factors build walls between the special needs community and others. We will talk about how those walls can come down and how these families can get more support from their friends, family, churches, and communities. Join us?

31 Days of Supporting the Special Needs Family

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Series Contents

 

Part 1: All About the Special-Needs Family

Day 1: The Story Behind the Series and Series Contents

Day 2: The Profile of the Special Needs Family

Day 3: 5 Ways Our Special Needs Child Strengthened Our Marriage (and How We Stayed Together)

Day 4: Making a Way in the Wilderness: Marriage and Special Needs

Day 5: “I’d Have It No Other Way”

Day 6: Embracing My Son’s Autism: A Dad’s Perspective

Day 7: Life as a Special Needs Dad

Day 8: Understanding the Financial Needs of a Special Needs Family (and how YOU can help!)

 

Part 2: Spotlighting Special Diagnoses

Day 9: Our Journey with Tube-Feeding: The Good, the Bad, and the Ugly

Day 10: Parenting a Child with PIDD

Day 11: Dark House of Hope {Diagnosis Spotlight: PDD-NOS}

Day 12: Etched Upon My Heart Forever {Diagnosis Spotlight: Down Syndrome}

Day 13: Yes, jaundice can do that {Diagnosis Spotlight: Kernicterus – KI}

 

Part 3: Special Needs Families in Special Circumstances

Day 14: A Special Needs Mom With Special Needs

Day 15: Encouragement for the Pregnant Special Needs Mom

Day 16: We Called Him Superman: A Decision for Special Needs Adoption

Day 17: Ezra’s Story: Not quite “typical”…not quite “special” {for the mom of the undiagnosed child}

Day 18: In His Hands {4 lessons learned from adopting older special needs children}

Day 19: The Challenges and Blessings of Parenting Special Needs Children with a Chronic Condition

Day 20: Shea’s Story {on being a single special needs mom}

 

Part 4: Opening Dialogue, Building Bridges, Creating Community

Day 21: Special needs and community: how walls are built

Day 22: Bridging the Gap

Day 23: Special Needs Moms: Are You Special or Just Like Other Moms?

Day 24: Community in the Midst of Special Needs

Day 25: What is Normal?

Day 26: Coping with Family Discord as a Result of your Child with Special Needs

Day 27: 5 Practical Tips for Successful (and Joyful!) Playdates with a Special Needs Child

Day 28: 25 Ways for Special Needs Parents to Recharge and Reach Out

Day 29: 3 #Ausome Apps for Children with Autism

Day 30: Dialogue: what not to say – and what TO say – to special needs parents

Day 31: Ultimate list of encouraging blog posts for special needs families {and those who love them}

Subscribe to receive all 31 Days posts by email! 

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*A brief disclaimer:

I recognize that there is some controversy regarding the term “special needs family.” Some families prefer the term “disability” and say that the term “special needs” generates “pity and segregation.” Others take offense to the wording of the phrase, saying it is not “people first language.”

I have contemplated these things for a year now and spoken with several families about this issue. I have chosen to go ahead with using the term because I feel it to be the most all-encompassing. I want no family with extenuating needs to feel excluded – whether those needs be a disability, a mental health disorder, a behavioral disorder, a physical deformity, a genetic or birth defect, or an illness such as cancer. All of these needs are valid. 

As far as putting the descriptor in front of the person, it is only for sake of brevity of words that I have done so. I recognize that these amazing children and families have a personhood and identity that reaches far beyond their needs.

My sole purpose is encouragement. It is my hope that all who land here find it.

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