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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5 Lessons Learned Since The Diagnosis

5 Lessons Learned Since The Diagnosis

One year…..One year since we received the call that would firmly change the projected path of our lives.  Early in the morning on January 11th, 2018, we received answers for our daughter’s developmental delays.  PURA Syndrome - the first time I would hear the name of this rare genetic condition.  Knowing provided answers, and a community, yet also leaves us with many questions, as is the case with most rare diseases.

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Top Four Posts of 2018

Top Four Posts of 2018

I started this blog in May of 2018, about four months after Taylor was diagnosed with PURA Syndrome, a rare genetic condition affecting approximately 200 individuals worldwide. I wasn’t really sure what I wanted to do with it at the time, but I knew I wanted a quick way to update the many people who are very interested in Taylor’s life, and also wanted to bring awareness to my daughter’s condition and other rare diseases.

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Kindness is a Higher Calling

Kindness is a Higher Calling

Chick-fil-A, would you like a review of a recent experience at one of your restaurants?  It would be my pleasure! Anyone who dines regularly at a Chick-fil-A is well aware that these folks know how to provide quality customer service.  It’s a bird, it’s a plane….NO, it’s your local Chick-fil-A worker!!!  Chick-fil-A sends people into the rain and snow to cut down on your drive-thru time, they will walk your food to your table and bring a high-chair for your child, they will ensure you have ample sauce, straws, your beverage is never empty, and your trash is cleared, and respond to your expression of thanks with a cheery “my pleasure.”  They are pretty much A-M-A-Z-E-B-A-L-L-S!

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Crawling: Our Favorite Toys for Encouraging Gross Motor Development

Crawling: Our Favorite Toys for Encouraging Gross Motor Development

We’ve covered our favorite toys for encouraging tummy time and sitting, and now we move on to crawling. Crawling requires significant strength and coordination, as well as the ability to plan and execute movement, also known as motor planning. Crawling is going to improve core strength and postural control, as well as strengthen muscles in the shoulders, arms, and hands.

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Sitting: Our Favorite Toys for Encouraging Gross Motor Development

Sitting: Our Favorite Toys for Encouraging Gross Motor Development

It will take several months to build up the strength and coordination for your little one to sit. I was so excited when Taylor was able to sit up (even propped) as it seemed to give her a new view of the world and she became even more engaged. The items that will be listed below were particularly helpful for us as Taylor made the transition to sitting independently.

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Tummy Time: Our Favorite Toys For Encouraging Gross Motor Development

Tummy Time: Our Favorite Toys For Encouraging Gross Motor Development

I have received a few requests to share some of our favorite toys for encouraging gross motor development. As a result, I’ll be doing a series of posts over the next week highlighting some of our favorite toys! The options below will work well for neurotypical children, as well as children with developmental delays.

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Loss of a Life Imagined: Grief and Chronic Sorrow

Loss of a Life Imagined: Grief and Chronic Sorrow

I like to put a positive spin on things….look at the bright side….make lemonade out of lemons.  However, there are some days when parenting a child with special needs is really tough.  Slow progress can be discouraging.  The inability to fully communicate with a child can be frustrating and feel lonely.  And, although I try to avoid it like the plague, I can’t help but compare my child to all those typically developing children running around in the world. 

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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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Coincidence or Sublime Plan?

Coincidence or Sublime Plan?

My husband and I recently decided we wanted to start the process of looking for a new home.  We have been living in a tiny two-bedroom condo for the last several years, one we bought shortly after the recession for an amazing price.  As I reflect, we weren’t even planning to buy the condo.  Back then, we were a newly married couple looking to move a little closer to the city.  We met with the previous owner, a sweet, recently widowed retiree, with the intention of renting. 

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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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