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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.Kangaroo care is so important for the development of babies, especially premature babies. It's also often described as the moment mothers feel like a 'mommy' and it can be a turning point in the boding process for families in the NICU. Our Helping Hearts work to help families before they can experience Kangaroo Care - message us for more information!
We're excited to share two new fundraisers coming up this spring and summer. One channels your creative side while the other shows you what $330 million looks like in action! Stay tuned to our events page!🤩👩🎨⚾️
'I really hope that one day more people in the world learn some compassion and respect that people are different. What makes us different makes us beautiful.' 💗
Five Things I Want for my Daughter with Complex Needs
1. To know how much you matter. You are loved, important and valued. There are days feel an overwhelming guilt that you aren’t with me. You go to school, and...THIS is why BennettStrong is working to bring community resources to families of medically complex children. PTSD is a reality for these caregivers and their special children. The N/IICU parent survival kits are just the beginning of what we'd like to do to support happy, healthy, thriving families!
For Parents of Ill Children, a Growing Recognition of PTSD
Post-traumatic stress diagnoses have long focused on combat soldiers. Now, doctors are increasingly aware of those symptoms in another group: parents of children with life-threatening medical conditions.A big thank you to Samantha Bambino for this great article highlighting our project with CHOP's N/IICU!
uppersouthamptontimes.com/bennettstrong-gala-raises-7-000-at-northampton-country-club-da91c322f86f
BennettStrong Gala raises $7,000 at Northampton Country Club
The funds will go to the creation of Parent Survival Kits, which are distributed to parents of micro preemie babies at the Children’s…A great article written by The Washington Post highlights the prevalence of PTSD and post partum in parents who's children are in the NICU. With increased mental health support, awareness, and resources (Journals, anyone?!) parents can have the tools needed to navigate the murky waters that is in the NICU.
‘Every 30 seconds another alarm is going off’: Neonatal ICUs can take their toll on parents
They have higher rates of depression, anxiety and PTSD. Extended hospital stays can even make them less nurturing.It's been a week since the gala, and it's been fun seeing all of your memories! Share one of your favorites with us below!
If you weren't able to join us, check out the fun we had: tomweishaar.smugmug.com/Public-PRINTS/Bennett-Strong-Foundation-Gala/n-fRQjL9/
Bennett Strong Foundation Gala - 2019 - TomWeishaar
The photographs in this gallery are free to download. For the highest quality image use the download icon at the bottom of each image. If you have any problems or issues pleaes feel free to contact me: Tom Weishaar at 610-909-2000 or tom@OneMoreShot.comJennifer Wielgus is a great writer and reporter, and she's outdone herself this time! Mary had the pleasure of meeting with her a bit ago, and this article encapsulates a lot of our goals as a foundation, our focus of NICU families, and our feelings around the very real idea of 'living sorrow'. Thanks, Jen, for your beautiful words! WARNING: TISSUES NEEDED!