• Anat Baniel Method •
Lyla is on day 2 of her Anat Baniel Method Intensive with Rezwana Patterson. She is doing 10 x 30 min lessons over 5 days, sounds like a lot I know but she loves it and soaks up all the learning like a sponge.
It’s based on neuroplasticity and building new neural pathways and to be honest it’s a bit difficult to explain without seeing it.
So here’s a snippet of Day two
NEW BLOG POST: We’ve interviewed MTeam captain @john_joseph_anthony on the blog today (link in bio - please read and share!). A favourite quote: “When you see someone with a ‘disability’ (I don’t even know what that word means anymore), they have abilities that no one else has. They can change your life lie no one else will. Humans shy away from different, but we should cherish and nurture it. It’s all in your perspective.” #disabilityadvocate#disabilities
I've been getting requests to make Hux an Instagram account to follow his journey for about 2 years & it's finally here. For those of you who have just recently started following my personal account or are unfamiliar with his story, here is a little backstory. Hux was born 9 weeks prematurely due to multiple pregnancy complications.
He was diagnosed as deaf in the right ear after failing 2 newborn screenings. He spent 3 months in the NICU, where he received many diagnoses, such as chronic lung disease & multiple heart defects. He was diagnosed with Noonan Syndrome just shy of 5 months old, while inpatient for G-tube surgery for severe feeding intolerance. Hux started OT to kick hypotonia to the curb at 6 months old. PT & ST followed soon after. We discovered that he had some degree of hearing loss in BOTH ears at 9 months old. He was 8lbs & losing at 10 months old & we thought we were going to lose him to feeding intolerance when we switched him to a blended diet against drs recommendations, & it worked! He was completely weaned from his feeding pump, gaining weight & taking bottles before his 1st birthday. An ABR at 15 months old confirmed that he was bilaterally profoundly deaf. A 3 month hearing aid trial didn't work. At about 18 months old, his GI symptoms returned & nobody could figure out what was causing them. He got a new endocrinologist at 2, who diagnosed him with growth hormone deficiency and told us that his blood work was also positive for Celiac Disease. An endoscopy a month later confirmed the diagnosis. Now he is almost 3, is on a strict diet to reduce flare ups, is getting very close to standing unsupported, knows 30-40 signs, can hold a conversation in ASL, goes to therapy bi-weekly, is growing like a weed thanks to nightly growth hormone shots, & his fiesty personality keeps us smiling through all of the hard things that come our way. 😊This is our journey through endless therapies, appointments, & new adventures. 🐢♿️💚
• help •
I love how Blair helps her learn how to steer her Bugzi using her switches.
It’s hard work for her to make her body hit the switch she wants when she has to fight against the dystonia too. She tries so hard that the sweat is actually dripping off her 💦 she has such determination but she gets so angry with herself.
And Blair’s face when she knocks into furniture or gets stuck is hilarious 😂
• life •
Regram from @mightyable and @fifiandmo and so many other places I’ve seen this over the past couple of days.
My absolute best resource since becoming a parent 8.5 years ago has been other parents. Support from other parents with shared experience became exponentially more important after Lyla was diagnosed with cerebral palsy and polymicrogyria.
My friends who walk the same path as us, online and in real life, are my most important source of support, ideas, inspiration and motivation.
Never underestimate the power of community and finding your tribe.