"So here's the plan: We go forward with joy, hope, gratitude, courage and humor, we boost each other up with love and encouragement, and we don't take things too seriously..."
This is the story of our beautiful 3 year old boy Liam, and our family journey through Autism.
Big brother to 10 month old twins Daisy and Sam, little brother to Clayton and incredibly loved by his mommy and daddy.
Some of his favorite things are to play on his water table and in his pool, swing, go to parks, go on walks with his mommy, monkey joes (or any bounce house will do), blow bubbles, take baths, jumping, runng and climbing, chase after our pets, collect rocks, draw, play piano, dance and listen to music (i love dancing with mommy), watching yo gabba gabba/wonder pets/or team umizoomi and wrestling with daddy.
He loves to eat chicken nuggets, bananas, pot pie muffins, potato chips, fruit and veggie smoothies, applesauce (mommy sprinkles a little bit of cinnamon and brown sugar on top for me)and anything with chocolate. And gummies. Loves gummies.
Liam is a smiling, laughing, loving, snuggling, happy, amazing kid on the go go go! and an all around blessing to all who are lucky enough to have him in their lives and hearts.
My purpose here, is to log our steps, our highs and lows, challenges and successes.
However, we decided a while back that we were not going to wait for an official diagnosis, and began some early interventions and healing about a year ago.
Since this all began, i have graduated with a PHd in Google research :) .
I have spent countless of hours researching online, reading books, emailing, calling and talking to people who may be able to give us more insight, and provide us with guidance.
It is certainly an ongoing journey of discovery as well as an enormous learning experience, one which i have torpedoed into and will never give up on.
At some point i will write and give a more in depth perspective about our personal and emotional journey from the very beginning. In hindsight, we noticed things from very early on, I would say as early as 4 months. There was no "regression", like the majority of the stories you hear about kids, after receiving big rounds of antibiotics or getting vaccines and having adverse reactions before age 2. None of that happened.
For now i will begin just by documenting our bio-medical interventions as well as therapies and anything else we are attempting in our battle against this thing called autism. Jenny McCarthy said it best hen she called moms of kids on the spectrum, "Mother Warriors".
That is precisely what it feels like.
Liam was still completely non verbal at the the age of 2- meaning he had not a single word in his vocabulary. He also did not gesture, such as point to things or wave (these were some of the first "red flags", very early on). His method of communication with us when he wanted something was to grab for the object or hand us the object, or if he was hungry or thirsty he would go into the kitchen and sit or stand by his snack table.
Anyhow, after some research and a few referrals, i contacted the Babies Cant Wait Program . It took them a while to send someone out, only because they didn't have anyone for our area at the time (The therapist come to your home). After almost six months of waiting, he finally began receiving speech therapy, and occupational therapy.
Wanda was the first speech therapist to come out, and she was the first to mention that she believed Liam had something called Sensory Processing Disorder, also known as SPD. More specifically, that he was a Sensory Seeker.
The one thing that really was like a DING DING DING! moment for me was when she described one of the traits of a sensory seeker, which was always smelling things. Like everything. From a rock to a table to a new person almost everything Liam will come in contact with, he will first smell. We thought this was just a cute, quirky personality trait in the beginning, before we had any idea what was really happening.
So anyways, when she described this trait, this "Stim" , i about fell on my knees. FINALLY someone was getting it.....which meant i was starting to really get it too.
I had already begun to research things and had come across a few websites talking about SPD, and so my instincts were telling me that that Liam may fall into that category.
SPD often goes hand in hand with Autism, but sometimes people just have it on its own. There's are many types of SPD. Some people are the opposite of Liam and instead avoid sensations. The list of symptoms is long and you would be surprised at how many you or someone you know may have :)
At this point we still didn't really know, or want to think that Liam was on the spectrum for Autism. In fact at this point i didn't even know what "on the spectrum" meant. We kept saying it had to "just" be SPD, and maybe ADD or ADHD. Maybe hes just a late talker. Maybe maybe maybe. We kept waiting for him to "snap out of it", start talking and everything else would just fall into place.
Hope is a funny thing, and has an ever changing dynamic from what i have come to learn.
Once we began seeing his speech therapist Jill on a regular basis, we began to see a positive change almost immediately. She was not technically an occupational therapist, but because Liam is a sensory seeker he has a lot of sensory needs and by default she had to utilize a lot of OT and Sensory Integration techniques in order to get him to focus on the speech therapy stuff. It worked.
She worked with him to try to get him to focus, and to be able to engage him.
She taught me about play therapies and PECS.
Ginger, the occupational therapist came in much later in the game, and Liam had a harder time clicking with her. She was great though, super sweet and full of information.
I have learned SO MUCH from his therapists, the information i was able to absorb was invaluable.
Ginger, worked with Liam on fine motor skills. Self feeding by using utensils (he has mastered using a spoon since), playing with toys appropriately, sitting for longer periods of time at the table (also doing very well with this for the most part now), drawing (which he never used to show ANY interest in, be;ive me i tried over and over and even with Ginger and then about a week before he turned 3 he picked up one of my highlighters and started scribbling on my notebook just like that. Since then he draws every day a few times a day. He loves to draw.) , things like that.
He had/ has the ability, its just getting him to hone in, focus and interest him- to show him how to do it, and getting him to continue to do it.
Before therapy and the GFCF diet (more about he diet shortly) Liam was all over the place. It was seemingly impossible to engage him or to get him to focus. He did not have any verbal cues. He did not play with people. He engaged in repetitive play and very simple play. He had a lot of stims. opening and closing cabinet doors, running randomly through the house, spinning everything he could get to spin......now, not so much. He has the occasion stim (mainly the need to want to jump a lot) but its been greatly reduced.
So, more about the Diet. Around the same time that Ginger started, and about halfway into therapy with Jill we began the GFCF diet. Gluten free, Casein (dairy) free, and Soy free diet (GFCFSF). This diet is known for people who suffer from Celiac disease but, is also known as The Autism Diet.
A few more great links on the GFCF diet and Autism:
Talk About Curing Autism Now- GFCF Info (this entire website has become my autism bible)
GFCF.com
GFCF Kids
I am not sure if it was the GFCF diet, or therapy or a combo of both or maybe just that he was getting older too (plus A LOT of praying) that made many things start happening around this time.
It was like something clicked and a fog began to lift.
There have been many improvements and breakthroughs and there continue to be since.
The Babies Cant Wait Program ends at age 3. In September, he transitioned to a special needs preschool program here in our county. This program also provides speech therapy, occupational therapy and his teacher has a degree in special needs education. It has been a challenging start but its been about a month now and he is beginning to adapt.
However, Liam needs additional ongoing therapy, more than what the school provides. We are in the process of setting that up as well. Insurance companies SUCK by the way.
Now, we are in the process of creating a bio medical protocol for Liam.
Here is another great link on Biomedical Interventions.
One of the first supplements we are trying is made by Kirkman Labs and is called Super New Thera.
I began last night, by giving him 1/4 of a teaspoon in orange juice.
This morning and also this afternoon he received the same amount.
We are going to work up to 1 tsp. a day for two weeks. After which we will begin with DMG.
I am also beginning research on treating an overgrowth of yeast in his gut which i have a feeling he has.
And so we continue on this journey.....
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