Caregiver Stories

Being a caregiver means dealing with many challenges whilst trying to stay upbeat and positive.  If you are a caregiver of a child with autism spectrum disorder (ASD) or know someone who is, you know it is not an easy task. From the early hours of the morning to late in the evening (and often in the middle of the night), caregivers are the first responders to the daily needs of their child with special needs. They are responsible for assistance with toileting, dressing, feeding, therapy, education, transportation to appointments, and so much more.  There are no weekends or holidays off for parents of children with autism, because in most cases, caregivers do not have someone who can fully take on their role.

The NEMO therapy model is designed to be delivered at home, in real daily life the primary carergivers at home are the parents, and most often the mother.  In our trials, several of the mothers kept a form of diary to record their notes, thoughts, observations, emotions and sent them to us along with the ATEC scoring being used to measure and record changes in autistic behaviour. 

 

The results were often profound and there were many 'spontaneous' positive changes in behaviour over time - to those not affected by autism, some of these may seem trivial - for those affected and their family's - these are transformative.  All names are removed to anonymise the documents.  Much as we appreciate the scepticism of any quote used for testimony, we simply had to share the feedback during the journey so far... this is what drives us, the momentum of hope that these successes can be repeated on a broad scale and truly make a difference for many.

If you want to read more check our our own published papers about the pilot study and hypothesis here.

Teenager
Dentist Office
Smiling Teenage Boy

"This has given me my children back..."

These are very small things to most people, scientists, parents, any reader of this. What I am watching in Subject 1 is the evolution of how one matures, grows and learns at such a slowed rate. It is all in there. It is a matter of figuring out the internal distraction. Whether that distraction be sickness or discomfort, oxygen seems to have given both Subject 2 and Subject 1 the comfort they need to move forward, albeit slow but steady. What do they say about slow and steady? Slow and steady wins the race my friend."

With my dying breath, I will know it was you guys and your oxygen that got them back in the race

"He has shown massive improvement in handling situations..."

"He had his first wildly successful dental appointment ever.  It was such a night-and-day from before where he was either knocked out cold or wrapped like a mummy and still needed 3 adults to hold him down.  No holding down, no struggling.  It is truly a miracle, and this is following his first haircut without any struggle, and his first doctor visit where he willingly participated in the examination.  These things have all been struggles for a decade, and then that they just all magically disappear in the same week is no coincidence……."

"New successes are appearing - everyone is noticing..."

"I have just finished the new ATEC and it is down to 92!  My husband just said to me yesterday that he is really starting to see a "this is for real" change.  We have had people give us good feedback and we have seen little successes crop up here and there, but we as the parents now feel we are definitely able to recognize them too..…"

Our hypothesis for the changes we see...

NEMO Therapy is a medical rather than a psychosocial treatment, and whilst sounding simple, has delivered amazing and very real results.  We have published two peer reviewed papers - one about the initial pilot study, and more recently a hypothesis paper which explores and explains what we believe is happening biologically in the brain to create the functional changes that are resulting in the significant improvements observed and rated by the parents of the children we have worked with.​

A mothers story on the changes from the therapy during a pilot study

"Be patient, this therapy really works"

A mothers story on the changes from the therapy during a pilot study

Many of our pilot studies involved teen and pre-teen aged children.  Diagnosis for autism is typically around age 4 years or later, and thus there are many younger children with need.  The brain development and neuroplasticity of young children is not well understood and requires further research, however the results we observed demonstrate beneficial outcome.  This family had twin autistic girls aged 5 when we started.