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Being honest about your struggles is just the first step in managing caregiver burnout when you have a child with special needs. Find your tribe and keep them close and NEVER feel guilty about taking some time out for self care (if you have the luxury of nurses or loved ones able to help).
If you're family or friends to caregivers - read this. Take a moment to understand what they're dealing with and find a way you can help. I promise you, they need it!
It’s Time We Start Talking About Caregiver Burnout in Special Needs Motherhood
Every night I wake up in a cold sweat actually believing that my child has stopped breathing, that when I go to check on him he will be…Postpartum is so incredibly difficult for NICU moms. C-section recovery doesn't happen, breast milk production is a huge challenge, and most are unprepared as their child arrived too soon or emergently. If you know a NICU mom and want to help support her postpartum journey, join us on 2/29/20 at our 3rd annual gala where we will talk about this experience, and why support is crucial to mama's (and baby's) health!
When you talk about postpartum, don't forget the NICU moms
Everyone has a heavy heart for a NICU baby, rightfully so, but NICU mommas need extra love too.Tomorrow night at CBWest we'll be going Gold for Pediatric Cancer Awareness! Bring a toy and join us at 6:45 for the coin toss with some VIP Team Captains!
As parents prepare their children to start a new school year, let's work together to start school years full of compassion, sharing, and inclusion! This is a great read. We're big fans of The Mighty!
Dear Parents, Please Talk to Your Kids About Their Classmates With Disabilities
"We need many different types of people for our world to work."Families of children with special needs local to Bucks County, check this out! Kids Castle will be accessible!
patch.com/pennsylvania/newtown-pa/s/gtglw/see-what-kids-castle-will-look-when-it-reopens-fall?utm...
See What Kids Castle Will Look Like When It Reopens This Fall
Here's a look at what the popular playground will look like once it reopens this fall:This gives us all the feels! Kudos to those who embrace opportunities like this to make special memories with really special kids! (and a special Kudos Winnie the Pooh, this is a beautiful moment).
Firefly makes some wonderful products to help special needs kiddos access their environment. Check them out, they're awesome!
This is our family experience when we go to the grocery store: We park in a handicapped spot, wrestle the wheelchair out of the back and put it together (yes it must be taken apart to travel), get Bennett out of his carseat, wrestle him into it, and begin our short walk into the store. One of us will push Bennett's chair while the other navigates the store with the cart. When the store is busy, Bennett is constantly being cut off, ran in front of, or we're split up. It's honestly stressful, but not unique to other special needs families.
THIS would change our ability to grocery shop! No wheelchair wrestling and we wouldn't have to go as a family of three all of the time!
Wegmans rolling out shopping carts for children with special needs (VIDEO)
The special carts are designed for children ages 2-8 or up to 77 pounds who require extra postural and head support, a Wegmans spokeswoman said.Posted from a friend of a sweet lil lady with some special needs. She's right - the 'R' word has gone out of style - like smoking cigarettes and driving without a seatbelt on. Move on from this word - it does nothing to foster a community of respect and acceptance!! AMEN and AMEN!
An Open Letter to the Person Who Still Uses the "R Word"
Your negative associations are slowly poisoning the true meaning of an incredibly beautiful, exclusive word.Pre-eclampsia/HELLP Syndrome is the leading cause of Cerebral Palsy in infancts AND maternal mortality in the US! Moms can develop pre-eclampsia up to 6 weeks AFTER birth, so it's important that new mothers and family are informed. Know the symptoms, and while it's important to focus on baby's transition home, it's equally important to make sure Mom is healthy, too!
Heroic Ebola Survivor Named Time Person of the Year Dies in Childbirth
After surviving the deadly disease, she fell victim to a broken health system.We'd add: Our child has special needs, but his biggest need is to be loved!
We need to know that our family and our child aren't in this journey alone: we're needy and we're special, but we still need to be loved and included!
Way to go, Google!
Google Maps launches a 'wheelchair accessible' option for 6 cities
Making cities a little easier to get around.Infantile spasms are considered a form of 'pediatric catastrophic epilepsy'. They are found by a specific type of movement along with a very scary looking EEG. They actually cause regression in a child's development, and if left untreated, can become a more serious form of lifelong epilepsy, leading to early death.
I.S. is worth talking about, but not because they're scary and debilitating. The primary medication used to treat I.S. can cost $200,000 PER VIAL. Most patients need 2-3 for a full course of treatment. ACTH (the medication) is trademarked and deliberately marked up so pharmaceutical companies can benefit. 🤬 I.S. and ACTH need to be understood so we can have more informed conversations about healthcare!
Infantile spasms, seizures and us
One of the most important things we were possibly told as we left NICU when Jaxon was a month old was that he was at risk of developing seizures at...BIG ANNOUNCEMENT:
bennettstrong.org/press-room/press-releases/savethedate2020/
Save the Date: 3rd Annual BennettStrong Gala
The BennettStrong Foundation is proud to announce the date of the foundation's third annual gala, which is set for Saturday, February 29, 2020 at the NorthamptoWe think this is pretty awesome!
Zac Brown Band Start Camp for Those with Autism and Special Needs
www.youtube.com/watch?v=WtgGzKRHT-Y&t=1s I was diagnosed with autism at 4 and shortly thereafter had a very meaningful camp experience at a JCC near me specifically for those with special needs. Today I'm a professional speaker, author and consultant who travels the country to break down...HELLP Syndrome was the cause to our journey and certainly not unique to us! Know the symptoms!
This project is STILL going strong! We've made another batch and we're collecting for a delivery on June 20th! If you'd like to contribute, message us or email: BennettStrongfoundation@gmail.com. We'll send you the pattern and add your name to our donors list! 💗💗💜💙💚💛🧡❤️💜
You can guess where the Pellegrino family can be found this summer! This is awesome, and so needed. Check it out!
Treasure Island now has wheelchair beach path
Feel the sand on their toes.This is SO cool!
This blog written by a special needs parent gets to the heart of the social media experience special needs families face. It's not unique to any other user, but the honestly is so eye opening and courageous, we had to share!
www.fireflyfriends.com/uk/blog/what-you-see-on-social-media-isnt-reality/?utm_source=blog&utm_med...
What You See on Social Media Isn\'t Reality
This should be a mantra that I repeat to myself over and over every morning in front of the mirror. That, or I should really cut down on my use...Thanks, Ikea! We're excited to see the adaptable options to support special needs kids growth and development. Families play the insurance game and spend a lot of money adapting their home for daily living. This definitely makes 'life' for accessible and affordable!
Interesting read. Disabilities or not, this hurt a lot of families of students. It's just gross that disabilities will be 'faked' for the sake of opportunity, foresaking those whose diagnoses are real.
'A gut punch': How the college admissions scandal hurt families with disabled students
Parents fear the scandal could jeopardize what is already a stressful process for students with legitimate need to get disability accommodations.Have a loved one with special needs and want to create a secure financial future for your family? Check out this FREE workshop! Having a child with special needs impacts all aspects of life planning - see what you can do to ensure your child is cared for financially while maintaining health benefits.
March is Developmental Disability Awareness Month in PA. It'll be fun finding ways to enhance the lives of those living with a developmental disability in our area!Governor Tom Wolf issued a ceremonial proclamation last month which declared March as Developmental Disabilities Awareness Month in the Commonwealth of Pennsylvania. Read the full proclamation below:
We've recently had to use a dirty bathroom floor for the first time to change Bennett's pants. It was degrading, embarassing, and disgusting (in an outpatient physical therapy clinic - we were shocked, too). Many tears followed this experience. Kudos to park developers for hearing the needs of families! Family restrooms can easily be adapted with benches for a variety of self care needs!
New disability-friendly toilets open in park after parent campaign
A DISABILITY-friendly toilet block campaigned for by parents has opened in Abingdon's Abbey Meadow park.