Rare Disease 101 from NORD in honor of Rare Disease Day 2018

  Rare Disease 101 Rare Disease Day is an international awareness campaign that takes place on the last day of February each year. It is the one day the world comes together to recognize people with rare diseases with the goal of raising awareness among the general public and decision-makers about rare diseases. The global theme for Rare Disease Day 2018 is patients and research. For patients, their families and caregivers, getting up to speed on […]

How a Life Coach Helped Me as a Parent of a Child With a Disability

by LisaMarie Bernardo You might be wondering what exactly a life coach is and what they do and how they can help parents of children with disabilities. A life coach can help parents — especially parents who are raising children with disabilities — take care of themselves while taking care of their family. Parents are usually thinking and putting their child’s needs first, putting themselves and their needs last. By constantly putting their needs last, after a […]

Forgetting Milestones and Learning to Measure Progress…a New Way of Thinking! #Don’tStopTrying

By Mary Ellen Bogucki When I think of my daughter’s journey with Autism, I can think of many different analogies. One is the game of Jenga. There’s a tower missing a few blocks, but it’s still standing strong. Then in swoops a person who may remove a strategy, a modification or just strike a verbal blow that makes the tower sway and lose its footing. Oh…but it still balances without fully falling and I think […]

How to Help an Angry Child

by Lynne Pearson Edward, our autistic son, used to go from 0 to 60 pretty much instantly when he became angry. He’d seem fine and then he’d suddenly blow. Big time. Tension and Frustration spilling out in crashing tidal waves no matter who we were with or where we were. It was nigh on impossible to talk him down once he’d blown up like this. The best tactic was to stay calm, move to a […]

I’m Not a Supermom

by Tulika Prasad I’m not a supermom but I get that a lot. Having a child with Autism does not make me one. Please let me be weak and let me cry, let me make mistakes, let my guard down, and let me just be a mom, a wife ,a woman, not a “super-someone”. The day Vedant was diagnosed with Autism, life handed me a cape and said “now you fight and never stop doing so”. […]

How to Bully Proof Our Schools

By Marcia Hinds  How many of us still remember bullying incidents that occurred when we were in school? These incidents probably only happened once or twice in our lives, but the pain and those incidents are still etched in our minds as though they happened yesterday. We put the bullying behind us, and may be stronger as a result. But what if the bullying occurred on a weekly basis or even daily? Would it be […]

How One’s Voice can be used along with Assistive Technology

by Kippie Martin This is an article about how hearing one’s voice can possibly be used as a method of motivating, focusing, and healing. As an assistive technology consultant who has worked with individuals with disabilities for over twenty years, I have utilized software, hardware, and adaptive devices to meet the goals of students with disabilities. Acknowledging that new discoveries are made each day if we as educators are able to observe, research, make connections, and […]

Forgetting Milestones and Learning to Measure Progress…a New Way of Thinking! #RunningandAutism

by Mary Ellen Bogucki As I sit down to write this, I still find it all hard to believe. You see, my daughter, Bree, walks at a pace equal to that of a turtle.  Okay, I exaggerate, but only to prove the point that she prefers to walk slowly.  As I often say, hurry means nothing to her and the more I tell her to hurry, the slower she goes.  So, as I have written […]

We Don’t Treat a Diagnosis

by Nicole Kolenda As a parent of a child with special needs, you will ALWAYS remember the day you received your child’s diagnosis. You will always think back to THAT conversation, with that specialist, who sat you down and discussed with you their “findings”. Many of you, in this precise moment, wanted so badly to be fully present and listen that you made yourself nauseous trying. Others just blanked out—asking your significant other a litany of […]

Special Needs Mom Discovers Priceless Art Collection in Her Own Home

by Colleen Berlingieri Everyone has their favorite traditions. One of mine is decorating the house for Christmas. I love putting on some holiday music, grabbing a cup of coffee and going through the boxes that my boys have brought up from the basement. Then I spend the next couple of hours putting away my everyday decorations and putting up my Christmas ones. This year, as I was going about my usual routine, I began to notice […]