The Community needs information!

As I have said many times… My daughter was diagnosed with autism in a time period where access to information was unlimited (if anyone chose to!).

January 2011 was that month when I began to research about autism — what it could be, how to deal with it, what will the future hold. I found that a lot of the scientific information was overwhelming. The material from academia read too cold, as if they were talking about aliens. Information from therapists somehow always felt as if they were selling something. Testimonies from parents were gut wrenching and too sad.

I took it all in. I read as much as I could. I focused on what I could handle (financially and physically) and understood.

Nowhere did I find a detailed explanation then, why did my daughter within a month changed drastically and was not the same happy, fun, full of laughter kid she was.

This is my daughter now https://m.youtube.com/watch?v=Df-TLSVHfp4

This was her reality in 2012 https://youtu.be/vfcRxgTZVHk

I kept reading tons more.

We were in Greece then. Light was shed by a Ph.D. in Neuro Linguistics. She was sharp and objective. But no clear direction.

Other assessments by therapists and organizations working with kids on the autism spectrum did not make sense or offered hope.

The support from the tribe in Puerto Rico — family and friends — opened the door to see two developmental pediatricians. Both said – – Autism is medical, address the medical issues and your child will come back!

I wondered what they meant. They provided basic scientific info. They both said — read a lot, learn, be patient, not everyone who says they know about autism, actually knows what they are talking about.

And I read and read and read. Social media became my best friend as I filled a void – emotional and social.

The more I read, the quicker I understood what the doctors in Puerto Rico said — not everyone knows what they are talking about — What I was living with my daughter, her needs as a kid with a diagnosis had nothing to do with the material being shared by the press, by academia, by the scientists.

I decided to trust my instinct. Prioritize her needs and how to incorporate her into real life without hurting her or others.

I left Greece July 2012 and returned to the USA seeking the supports she needed. Many of her needs have been fulfilled by existing services. At the same time, many of her needs were not covered by existing services and I proceeded to act accordingly.

Her medical issues were many — dysbiosis, immune deficiency, mitochondrial dysfunction, Pandas, Pans, SIBO, etc. With Medicaid – I did not find an easy way to address these and seek better health. I pursued alternative medicine to address most of these issues. Details in a future blog!!!

Nutrition: From the get go, we were told – nutrition must change. Blood work was done, confirming she was gluten and casein intolerant. An elimination diet was done — she did not eat eggs, bananas or rice for three years (she could not handle it). Trying to introduce new foods was torture due to sensory issues. We stuck to basic clean nutrition – potatoes, sweet potatoes, chicken, steak, she ate broccoli thank goodness, gluten free bread and tons of olive oil Once in a blue moon, a papaya smoothie was accepted. She still has foods she will not eat. Little by little she’s trying new stuff – last week she tried calamari and chicken wings!!!

Therapies: We only paid for private occupational therapy in Greece (we found a recent OT graduate – we trained each other).

She received occupational therapy at home for 6mths thanks to Medicaid.

A psychologist came home for 6mths thanks to Medicaid (I was struggling with potty training and she was 5).

At school they gave her basic OT, basic Speech therapy which then became language therapy as she began to talk.

We paid for one year – one session per week – an incredible tutor who used multisensory methodology and taught her how to read at almost 9 years old.

Day to day functional skills — I read tons (science and practical). I created our own therapy lifestyle actions and steps. Everything we did was therapy. Every game played fulfilled a therapeutic need she had. Every social interaction supported the existing gaps.

Has it been easy? Not at all.

Has it been frustrating? Many times, yes.

What are the rewards? Too many… My child is back (see videos below).

What is the greatest lesson? What I’ve done, how I’ve done it – not everyone does it. Stay close to like minded people. Help others.

Be resilient. Be patient. Don’t pay attention to the nay sayers. Breathe. Be ready to sacrifice. Let love guide you.

Biggest lesson:

If your child has been recently diagnosed and you’ve been told your child will never say I love you, your child will need to be institutionalized — Leave that office immediately and look for another professional.

If you have been told there is hope, there are many therapies and resources — listen closely, get ready to act, don’t stop. Find or create your community, you will need it.

Without community we would not be where we are. Social media included!!!

Find and create your community.

Yes, I must repeat it!

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Below find videos and links to our news…