by Kristy Miller | Mar 13, 2023 | 8p, Disability, Family, Inclusion, Sibling
I’d like to begin by recognizing that everyone’s experience with raising a child with special needs is very different – at a minimum there are differing levels of needs, differing capacities in caregivers, and very different family...
by Kristy Miller | Mar 6, 2023 | 8p, Advocacy, Awareness, CHARGE, Hydranencephaly, IGF-1R, Joubert Syndrome, Kabuki, Noonan Syndrome, Smith-Kingsmore, Syndrome
February 28th is Rare Disease Day. It is a day that brings awareness to the over 30 million people in the US and over 300 million people worldwide living with a rare disease. A rare disease in the United States is defined as one that affects less than 200,000 people....
by Kristy Miller | Jan 30, 2023 | 8p, Books, Disability, Family
Like Me by Laura Wifler is a wonderfully written book about real life with a child with special needs. My typical kids love reading a story about a home and life that is so similar to theirs – hours spent in waiting rooms, quietly self-entertaining during...
by Kristy Miller | Mar 1, 2022 | 8p, Advocacy, Awareness, CHARGE, Family, Kabuki, KAT6A, Smith-Kingsmore, Syndrome
Today is a day that we can highlight all of our a unique and brave kiddos with uncommon diagnoses. Today is #RareDiseaseDay. These kiddos fight to be known in a way that most of us will never know. They are born or develop conditions that start as mysteries to the...
by Kristy Miller | Feb 21, 2022 | 8p, Exercise, Handwriting, Occupational Therapy, Physical Therapy, Reading
On a regular basis I am asked if crawling on hands and knees is really an important milestone. After all, kiddos are learning to crawl at the same time that they are learning to pull themselves up into standing at different pieces of furniture throughout the house....
by Kristy Miller | Feb 8, 2022 | 8p, CHARGE, Kabuki, KAT6A, Occupational Therapy, Physical Therapy, Smith-Kingsmore, Speech Therapy, Syndrome
This time of year you may start seeing posts about kiddos with diseases, disorders, and syndromes you have never heard of. Things like Kabuki, Smith-Kingsmore, KAT6A, 8p, CHARGE. What connects all of these names and why are we hearing about them now? Well, February 28...
