#Repost @sweetnectarsociety with @get_repost
Jason is a happy, rambunctious boy. He is non-verbal, uses the PEC system or minimal words to communicate. He struggles in large groups but is so loving. He is making strides in school and is meeting goals that were set out for him. He is a great big brother to his baby sister and loves his mom and dad.
Join Sweet Nectar Society in sending Jason some positive vibes! #photographywithapurpose#livesweetloveall#canon#fragilexsyndrome#autism @sweetnectarsociety
Photography donated by Brittany Wilbur Photography
"I'd Rather Burn Than Freeze" round 1.
Written by my Uncle Mike (Michael Bachstein), 1/13/83. Mike had cerebral palsy well before developmental disabilities were as accepted as they are today. His beautiful sister (my Mommy 😊) made sure to teach her children why using the word "retarded" is not fucking cool, ever, introducing us to the power of certain words and ideas and our own responsibilities when choosing those words.
I grew up and had a son with Fragile X Syndrome, forever thankful for that lesson (and wishing I'd fully taken her advice). Mike died young and tragic. I have boxes of his words and feelings.
Estás son algunas de las actividades que realiza nuestra Corporación y que se financian con lo recaudado en la cena anual, que es nuestra principal fuente de financiamiento. La Corporación #Xfragil la hacemos todos, para conseguir una mejor calidad de vida para quienes la padecen y sus familias, abriendo espacios para la inclusión de la discapacidad.
10 de septiembre en Casapiedra, cena anual a beneficio, 19:30 H.
Proud Dad ✖️
This photo really made my heart burst... Luke is such an incredible Dad 💙 Those that know him, will know his passion and love for football is next level... I’m so grateful that the Coolbinia Football Club have the Starkick program so Luke and Ethan can still have their footy moments together. Such a proud Dad seeing how far Ethan has come this year! 💛 Maria
Today my son Elias was diagnosed with ASD (Autism Spectrum Disorder) and a general cognitive delay. This is in addition to his Fragile X Syndrome. I am glad we did the evaluation and that he will be getting the correct services to help him succeed. I also feel emotional knowing my boy has more obstacles to face in life. It is overwhelming keeping track of and going to each appointment, therapy, and school. But if that is what it takes to get Elias everything he needs then I will make sure it gets done. It is not easy raising a child period. Raising Elias as a single parent has its challenges but we always find our way through.
I just want to take the time to share that no matter what happens I will always put Elias first. I will always make sure he is taken care of. I refuse to let him be left behind or treated as if he cannot do something. Being a mother is what gives me the strength to get through the day. As much as I get frustrated, tired, or feel helpless I know once I look at my son I will know what is important.
It is important for me to take care of myself so I am here to give Elias all he needs, NOBODY will ever love him like his momma does and I must love myself to be the best mom Elias needs and deserves. Thank you Elias Alexander for being my motivation, my inspiration, and my best friend. Momma loves you xo
Last night Ethan and his Starkick teammates had some @freodockers players come to training and do some skills training with them... it was a great opportunity for all the kids to get involved and have some fun! Great work Coolbinia Footy Club 💛 Maria
“You are not a drop in the ocean, you are the entire ocean in a drop” - Rumi
Meet my inspiration behind the brand KIRANA. My little man Mr. Ocean ! 🌊 Thank you for all the love and support for Ocean’s therapy and equipment.
This is the face of a young man who just saw his favorite player, @arizz_44 , take the field to bat.
This is the face of a young man who loves his @cubs and got to see all of his favorite players on the field today... Rizzo, @jlester34 @javy23baez , @benzobrist18 @albertalmorajr , @jheylove22 , @kschwarb12 , Edwards, @addison_russell , LaStella, @willsoncontreras40 , @ihapp_1 ..at Wrigley field.
This is the face of pure happiness.
Today wasn't the Win that we had hoped for but it was am amazing day at Wrigley that we all were able to be a part of.
We saw him stand and cheer, we saw the excitement as Baez & Zobrist hit their homeruns, we saw the sadness when "his babies failed him".
It was #EverybodyIn for Parker and the Cubs today, just as we do our best for it to be everyday.
This is the face of a happy young man, surrounded by all his family... his sister, his step-sisters, his best friend, his dad, his step-mom, mom's boyfriend and...his mom for his 1st Cubs game.
Most of all, this is the face of a young man who is loved more than the world by the people in his life who were honored to be a part of his big day! His first, but not last, Cubs game.
No matter the score, today we all won. ❤
Later today, I will be bringing my incredibly amazing 19 year old son, Parker, to watch you and your awesome teammates play. While Parker is 19 by age, because of having Fragile X Syndrome (an intellectual disability) it's more like having a 6 foot five year old.
While he faces many challenges in life, the one thing that brings him the most happiness is the @cubs , he knows and loves every player but you are his favorite!
We will be in section 27, row 11, seats 1-9, it was the closest we could get him to you. He's too old for the kids autograph area but we will be watching for you to look our way to tell him you know he's there.
This is going to be a tremendous challenge with his anxiety and sensory needs but I believe his love for the Cubs, you and being surrounded by family that he can do this!
If you could... he would really love to see you hit a home run 😁 and "Spank those Padres!"
See you soon,
This sweet boy. The view from his bed that he fell asleep to at Hotel Zachary, looking right down the first base line where later today he will be just 10 rows back from his most favorite Cubs player, @arizz_44 ! (He loves every single player but Rizzo the most!)
This trip has been months in the planning and I still cannot believe we are here!
When it comes to Parker, it's Everybody In, just like with the Cubs ❤ Parker will be surrounded by his entire family... Me, Allison , Dan, Scott , Jennifer , Abby, Grace and of course, Rylee for this super special day!
While we have been preparing him for a long time, extra well wishes, fingers crossed and prayers are always appreciated. You never know what Fragile X will bring... We all know he is ready!
Prepare for an overload of pictures! Look for the 9 of us in the stands, by the 1st base line, 10 rows up! Cubs vs Padres at 1:20 CST
Gracias a nuestro amigo @paulofloresgol por esta invitación a sumarse a la cena anual a beneficio de las personas con síndrome #XFragil y sus familias. Tu apoyo nos permite seguir trabajando para mejorar su calidad de vida y avanzar en una sociedad más inclusiva. Este 10 de septiembre en casa piedra más info www.xfragil.cl #fragilex#pauloflores#fragilexsyndrome#xfragil#inclusion#discapacidad
AXEL our Super Pup ✖️
The boys and I are thrilled to introduce you all to our Super Pup AXEL... he will be part of the upcoming @guidedogswa Pup Art Exhibition to celebrate National Dog Day.
The launch of the exhibition will be taking place at the upcoming Perth Art Market @perthupmarket at UWA on Saturday 25th August.
When I was first asked to take part the first thing that came to mind was turning him into a Super Hero following the amazing work of the Buddy Dog for Kids Program. His name means something pretty special too 💛
A - Awareness
X - Fragile X
E - Ethan
L - Logan
It was a huge honour to be asked to take part and I look forward to seeing him showcased along with all the other amazing Pups. 💛 Maria