Help Flynn Defy the Odds of Autism

This is Flynn - one of the most infectiously joyful, vibrant souls you will ever meet. We've been told on countless occasions that Flynn's gift is his ability to make others feel happy. We absolutely agree.

At birth, Flynn was diagnosed with achondroplasia (the most common type of dwarfism). It meant he had a complicated first couple years of life with multiple surgeries and illnesses related to the complications of his diagnosis. When he was two, we thought we were past the most difficult challenges, but at age 2 1/2, still completely non-verbal, he received another diagnosis: Autism Spectrum Disorder. Having dwarfism has not proved to be the challenge we expected - his short stature doesn't hold him back at all! However, this has not been the case with autism. For the last six years, we have worked to support him in speech therapy, occupational therapy, physcial therapy, play therapy, social skills training, ABA (behavioral) therapy and more. For ABA therapy alone, Flynn has worked between 10-25 hours per week since his diagnosis to help him become better adapted to the world and improve his ability to socialize with others. Behaviorally, he has improved by leaps and bounds. In fact, in August 2022, he was able to "graduate" from ABA therapy because it was determined he no longer needed that type of behavioral support! This was a tremendous achievement.

However, Flynn still struggles with significant cognitive issues. He has severe delays in executive function which impacts his ability to organize his thoughts, communicate clearly, understand what he reads and hears, complete multi-step tasks and more. In 2022 he was also diagnosed with ADHD (primarily inattentive type) and Central Auditory Processing Disorder. Now in third grade, it is becoming evident that these conditions are severely impacting his ability to learn. Looking into the future, if we are unable to improve Flynn's executive function then it is uncertain if he will ever be able to live independently as an adult.

A few sobering statistics:

(Source Autism Speaks: https://www.autismspeaks.org/autism-statistics-asd)

Numbers like these make us feel like the odds are stacked against us, but Flynn wants nothing more than to succeed and to give back.

He dreams of becoming a teacher. Lately, he frequently tells us, "When I grow up I want to be a helper because I think I am really good at making people feel better when they are upset."

His challenges are not due to a lack of interest or effort. As one of his teachers once told us, "If every child was as enthusiastic and motivated as Flynn, then my job would be very easy." This kid works SO hard! He insists on finishing his homework EVERY evening even though what would take most kids 15 minutes often takes him hours. He recently completed a four-month reading intervention where he went to a special class for two hours EVERY SINGLE DAY after school, got home at 5pm and THEN had to work on homework! His work days were longer than those of many adults and what did he say after he finished? "Mommy, I really miss my reading program." The way he perceives hard work and happiness often leaves us awestruck.

The program in which he was enrolled had been recommended by three of his physicians. It is a specialized sensory-cognitive instruction program called Lindamood-Bell, designed specifically to improve reading comprehension in kids with cognitive challenges and learning disabilities. The research behind the program is compelling. It has been studied and proven to change brain response patterns in children with autism, significantly increasing comprehension of both verbal AND written language. (https://lindamoodbell.com/autism/world-autism-awareness-month)

Last week he completed an initial round of 200 hours of instruction with Lindamood-Bell and the results were astounding. In just four months his speech assessment scores improved from "moderate delay" to "low average." (This is HUGE for us considering he's been in speech therapy for 6 years!) In addition, he improved on virtually all assessments of reading and comprehension by as much as two grade levels! But we still have more work to do. For him to get caught up to his current-grade reading level (grade 3), he has been recommended to complete another 180 hours of instruction.

As Flynn's parents, we are willing to do everything in our power to get him the help that he needs, but the frustrating truth is we are limited financially. We've exhausted all of our resources to pay for the first round of instruction and are grasping at straws to figure out how to pay for the second round - that is why we started this fundraiser.

Lindamood-Bell, while an exceptional program, is astronomically expensive.

One hour of instruction costs $165.

We are currently trying to raise funds for 180 hours of instruction = $29,700

UPDATE 8/17/23: We have increased our goal by $9,100 in hopes of covering one year of Educational Therapy (provided at $175/week by a therapist accredited by the Association of Educational Therapists), to help Flynn apply his skills from Lindamood-Bell to the classroom setting - specifically focusing on writing and math word probems.

We know we may be biased, but every person who has ever spent time with Flynn has spoken to the unique spark of infectious joy he carries. His attitude and outlook on life could teach us all something about hard work and positivity. He's the kind of kid who, after spending hours being hooked up to wires for a sleep study, sleeping in an uncomfortable hospital bed, then being woken up at 5am will say "Hey Mommy, that was a lot of fun!"

We want for Flynn what every parent wants for their child - to be able to be an independent and happy adult who finds fulfillment in relationships and work. We know that continuing the Lindamood-Bell program brings us, and him, a step closer to that reality.

We are so deeply grateful to you if you've read this far. Thank you for sharing our story and considering helping Flynn. The impact of your gift on his life cannot be understated. The course of his life and future will be forever changed for the better because of your help.

If you'd like to know more about Flynn, any of his diagnoses or Lindamood-Bell, please do not hesitate to reach out.

With Immeasurable Thanks,

The Swift Family

If you're interested, here is more information about the two programs he is receiving (it's fascinating):

Visualizing and Verbalizing: https://lindamoodbell.com/program/visualizing-and-verbalizing-program

Seeing Stars: https://lindamoodbell.com/program/seeing-stars-program

Supporting Research: https://lindamoodbell.com/research