Here we are, forty-three years into this Prader-Willi Syndrome (PWS) journey. I sometimes forget my daughter Jessica has it, until she gets ‘stuck’, which we recently experienced, and then it brings me back. For those unfamiliar with PWS, the beginning of a child’s life who has this rare syndrome tends to be a real struggle. … More Prader-Willi Syndrome & “Getting Stuck”
“Vacations” are an interesting adventure for families in general – a break from the usual routine. Hopefully, a chance to hit a “reset” button on life. For those of us with special needs children, it can be a layer even deeper into the unknown. We don’t always know if fewer people will be better, or … More In His Happy Place
I have been considering writing this for a week now, not because I want sympathy but because there are special needs parents out there who need to know you are not alone in your feelings. They are real, and for the sake of your child, you will come through to the other side if you … More Evaluations & Flashbacks
Those who know me know I tend to get messages in pictures or everyday life. As I was up on a ladder listening to worship music, I thought about how it had been some time since I had written. If anyone physically could have seen me, they might have chuckled. I had taken on the … More The Brush of Grace
One day this week, I found myself in the same hospital I unexpectedly visited three weeks ago. You see, I have a daughter with Prader-Willi Syndrome, which is a rare genetic disorder. When she was diagnosed in 1985, she was 1 of 600 known cases. Now, according to Google, there are something like 350,000 people … More SURRENDER – PEACE
Last night, preparing for bed, you had one of ‘those’ behaviors… You know, the kind the world wouldn’t understand… -the kind that makes people uncomfortable and makes them shift in their seats… You had a wonderful BIRTH-day, -we celebrated with you before you left for work -at work, they sang to you, and everyone signed … More Be Kind to My Son – A Mother’s Heart
Here I sit to ponder once again on April being Autism Awareness Month. Of course, I want to write something flowery, but in autism, the real of it is that it is not always pretty. Sometimes, it is hard for me to be vulnerable and to let you in my world because sometimes it is … More April – Autism Awareness Month – The Real of It!
This young man pictured here was my first introduction to a special needs world – isn’t he cute? The crazy thing is, I didn’t realize I was born into a special needs family until I got older! To me, he was my big brother Jeff, five years older than me. As with any siblings, we … More SPECIAL NEEDS: I SOMETIMES FORGET THAT I’VE BEEN PART OF THE CLUB SINCE I WAS BORN
It feels like it has been a while since I have posted a blog post. What do I have that could be worthy of your reading? Sometimes that is the question that I ask myself and honestly, I am not sure I have an answer. The truth is it has been winter around here. Thankfully, … More He Knows the Season You’re In
As I was thinking about Sam this morning, I had a flashback to his younger years and his writing on walls and anything else in front of him. Some of you are in the young years of your little ones, taking markers or crayons and writing in places you don’t want them to. How many … More CRAYONS / MARKERS / WALLS – OOPS!
SHEILA BOUCHARD 