Inclusive Fashion: How a Small, Local Boutique Got It Right

Inclusive Fashion: How a Small, Local Boutique Got It Right

Last Fall, Taylor and I kind of did a thing….. Britt Gooding, owner of an online and mobile boutique called CLT Boutique, posted a model call in a local Facebook group for moms, I couldn’t resist. Something prompted me to send a response along with a little photo of Taylor. Not only can you find the cutest graphic t-shirts, onesies, coffee mugs, hats, accessories, and more at the CLT Boutique, but Britt emphasized she was looking for models with diverse looks and ages.

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A Seat At The Table

A Seat At The Table

Despite the many social advances we have made in the last several decades, “difference” is often still associated with “defect,” and as a result there is a tendency to underappreciate, underestimate, and devalue the lives of those with disabilities.  Having a daughter with a rare genetic condition gives me unique insight into how those with disabilities are viewed and treated. Discrimination exists both overtly and covertly.  

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We Can Do It Together

We Can Do It Together

I sat at a nearby bar long after the fundraiser was over talking with Jean.  We talked about the joys and the struggles of raising a child with special needs.  As we talked, I was reminded of my own experience after Taylor was diagnosed in January of 2018. After the initial impact of receiving an official diagnosis, I wanted to know how I could help.  I wanted to find out as much as I could about the condition. I wanted to connect with other families.  I wanted to raise awareness for a genetic condition so obscure, only 300 people are diagnosed to date.  I wanted to do EVERYTHING I could to set Taylor up for success.  

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Top 9 Issues Facing the Rare Disease Community

Top 9 Issues Facing the Rare Disease Community

Rare isn’t really all that rare….according to the National Organization for Rare Disorders (NORD) 1 in 10 people live with a rare disease, and this does not include the millions, living with an undiagnosed, rare condition. About 7,000 rare diseases have been identified and advances in genomic testing are finally allowing us to identify and discover new conditions.  However, the journey does not end with a diagnosis.  The fight for appropriate medical care and services is ongoing in the rare disease community. Here, we highlight nine of the most significant issues affecting the rare disease community (and as you will see, one thing can lead to another):

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Fighting for Change

Fighting for Change

Writing this post is really difficult, because it plays to one of my worst fears as a parent of a child with special needs.  The timing is ironic, as I literally just sat with a friend in a coffee shop over the weekend and shared this fear….that my daughter, Taylor, will be treated poorly or subjected to verbal or physical abuse, and that I will not know about it. Every parent fears this, but it is most concerning to me because my daughter is nonverbal. She would have no way of telling me what happened.

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10 Tips for Supporting a Parent of a Child with Special Needs

10 Tips for Supporting a Parent of a Child with Special Needs

Not sure how to support your loved one who has a child with special needs?  You are not alone.  Most people are unsure about how to respond to a family when they receive a potentially devastating diagnosis.  You may not know what to say or how to help.  You may feel the relationship growing distant and not know why.  Although you may feel uncertain about what to do, there are many ways you can support a parent of a child with special needs, and let me tell you, we NEED your support….now more than ever. 

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Together We Can Do Something Wonderful

Together We Can Do Something Wonderful

One of my favorite quotes is from Mother Teresa: “None of us, including me, ever do great things.  But we can all do small things, with great love, and together we can do something wonderful.”  Tough Like Taylor’s parents had an opportunity to travel across the pond at the end of June to attend the 3rd Annual PURA Syndrome Conference.  The conference was held in the United Kingdom at the Wellcome Genome Campus, home to the Wellcome Sanger Institute, which is one of the leading genomic research centers in the world.  One third of the human genome was sequenced for the first time on this campus, which provided the largest single contribution of any center to the Human Genome Project (HGP)……pretty cool stuff.  Way over my head…..but pretty cool.

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6 Tips For Talking With Your Child About Disabilities

6 Tips For Talking With Your Child About Disabilities

We have all experienced it.....you are having an eventful shopping trip to Target (one where you claim you are going to buy sunscreen, aaaaand $175 later.....)  You have cleared out the store and are waiting patiently in the check-out line.  You look into your shopping cart and see your child staring, aghast at a person in a wheelchair and then loudly proclaiming, "Mommy, why is that boy drooling?!" 

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