Maine – In March we brought you the story about Stephanie Lay, mother to 14-year-old Bryce with autism and Self-Injurious Behaviour (SIB). Stephanie has used her grilled salsa recipe in order to connect with her son, to teach him life skills and to use the cooking time as a form of therapy for him. Woman develops salsa recipe to help son with autism – w/video can be read at https://www.autismdailynewscast.com/woman-develops-salsa-recipe-help-son-autism-wvideo/24494/adn/
Stephanie is also the founder of the SPECIAL Autism Foundation that provides much needed support and advice to parents of children with autism.
The website states: “Our goal is to help parents navigate their way through therapies, medications, legal rights, financial programs, and more.” What is interesting is the story behind how SPECIAL was founded.
Eight years ago Stephanie had to rely on government assistance to get by on a day to day basis. One day her electricity was turned off and because of this she tells that it “sent Bryce into a tailspin.” She went to a program called General Assistance, in order to get help turning it back on, but they told her that she made $7.50 over their limit to help her.
“I went home, sat at my desk in my candlelit living room and decided to try and make a difference in the world of autism. Help parents keep their lights on… I then wrote down SPECIAL, and came up with the acronym, Special Parents Establishing Connections In Autistic Lives. That was eight years ago.”
We managed to get in touch with Stephanie and she kindly agreed to answer some of our questions in between making her salsa and writing a book, Routine Interrupted (Autism, Cancer, Hospitals and Other Adventures). We also wanted to find out more about her son Bryce and his early years, how life is for them now and what the inspiration was behind her Maine-Tex Grilled Salsa recipe.
Our interview with Stephanie can be read below.
How where the early years with Bryce? Did you get much support?
The early years were more than scary. Before Bryce became self-injurious, he was a bolter and threw horrific tantrums. He would cry for an hour, or throw property around. I remember one time he opened his car door as we were going down the road. I pulled over and he bolted, we both ended up in the ditch. As far as support, I lived in Texas were services were few and far between. I was shocked at the difference in service options here in Maine.
Do you mind telling us a little about his SIB? How this impacts upon his life and your own?
After my father passed away, we moved to Maine from Texas. We left our two acres of land, and moved into an apartment in Portland, Maine. That was a huge mistake, because a few weeks after we moved here, Bryce began to bang his head. Most kids start off on soft surfaces then work their way up to the hard stuff…not Bryce; he went directly for the hard stuff; our hardwood floors were his surface of choice. It was too many transitions at once: my dad passing, the moved to Maine, and our small apartment set it all off. Two weeks after he began this behavior, he went into Spring Harbor hospital for his first of eight stays there. Most people on the spectrum feel pain and temperature differently than we do; therefore, I don’t think he felt pain from it as it was all about sensory. And as for how his SIB’s impacted my life, I would say obviously it’s unbearable to watch your child go through that much pain, but the odd thing, he’s had multiple CT and brain scans and not one showed any damage to his skull. Not even a hairline fracture.
How is life for you now?
Our life is still a little hectic, but, leaps and bounds easier than it was. I have pushed Bryce to learn new things: help me around the house, and as of late pump gas. He also learned how to start the car in the winter so that it can get warm before we leave.
Below is a video of Stephanie and Bryce singing. It was taken a couple of weeks ago. Stephanie wrote this song for Bryce when he was seven-months old.
“I was always afraid he would never know this song or that I wrote it for him… this video shows he does.”
What was your inspiration behind Maine-Tex?
What was your inspiration behind Maine-Tex?
As for the inspiration for Maine-Tex, that came out of nowhere. I taught Bryce at an early age how to cook. It was important that he could feed himself, because if I pass, he’d be on his own. We have no family so at least I know he would be able to feed himself. He has been cooking his meals since he was seven-years old.
One day, we decided to make some of my salsa that I’ve been making for the last eleven-years. I posted a picture of Bryce grilling our salsa. One of my friends commented, “I absolutely love your salsa, you should sell it!” Within two weeks I had 109 orders, a patent attorney, a food scientist, and the USDA (Untied States Department of Agriculture) involved. It all REALLY came out of nowhere. I went from being an autism activist for a decade, to being a salsa maker.
How did you get involved with Hannaford’s?
Hannaford’s had tomatoes on sale for ninety-nine cents for a whole week. I decided to make homemade spaghetti sauce to freeze, and some of my grilled salsa to can to last through the winter. Three weeks into this salsa adventure, Bryce and I were shopping and I saw the store manager, Doug Mercier. I shook his hand and said, “I owe your store a huge thank you!”
He looked at me a little baffled and I began to tell him the whole story. When I told him about the SPECIAL Foundation, and that I wanted to have some of the proceeds go towards the foundation to support a work program for individuals on the spectrum, he immediately was in! It just so happened he has a niece that has autism, and said she would benefit from a program like that. As I was leaving I said, “You should try some of our salsa!” He agreed, and a couple of days later I gave him a jar.
A few days later I went into the store and had him paged. He came downstairs with a smile on his face and I said, “Well? What did you think?” He replied “That salsa was awesome!” I asked him if he would sell it and he replied, “Absolutely!” …He’s been my friend ever since.
Does Bryce make the salsa? Is he still interested in cooking?
Bryce totally helps me make the salsa, and many other dishes. I think I’ve finally found his niche…cooking.
Where does the future lie for Maine-Tex?
The future for Maine-Tex is very bright! A local wholesale produce company invited Bryce and I to their facility where we had a “board meeting.” They made Bryce an honorary chef, and an honorary board member of their company, Native Maine. They also offered to not only buy our product, but sell it along with delivering it to their customers which is over 3,000. Then they made an amazing gesture and said they are going to comprise a board of chefs for me to consult with. One of the chefs is the 2008 Maine Chef of the year.
Personally, the last decade of autism, cancer, hospitals and other adventures have flashed through my mind. I think it was the universe’s way of preparing us for the greatness that occurred on 12-13-14, the day I posted the picture of our salsa, and Maine-Tex was born.
What advice would you give to our readers who may have children who are possibly not coping or who are having daily challenges?
Continues Here on the Use of Medical Marijuana
The advice I would give, and have given to many parents: never give up, challenge your child, don’t always listen to doctors (they learned autism in books; parents are learning this first hand). And finally don’t talk about your child’s autism or behaviors in front of them…they are listening even though you think they’re not. Also, schedule, schedule, schedule!!! It took me a while to figure out that our lives were much easier when I start implementing his schedule.
Would you like to share anything else with our readers?
I’m not sure what the laws are in the UK, but in the State of Maine, medical marijuana is legal. Bryce became the first adolescent in New England to be put on medicinal marijuana for his severe SIB’s. He went from banging his head 25-30 times a day, to once every two-three weeks. It was a scary step, but it was the best choice I made for Bryce. He has been on this medication for two and a half years now.
I put Bryce on the medicinal marijauna after he escalated to the highest level because I had a double mastectomy, along with MRSA and three other reconstructive surgeries due to wrestling with him. After my surgery, was when he started putting his head completely through the wall. I just repaired hole #33.
Below you can watch a news report featuring Stephanie and Bryce on the use of medical marijuana.
It was with great excitement that Stephanie told us that on April 25, Bryce and herself went to meet the governor of Maine, Paul LePage. He offered them help in getting a commercial kitchen, which Stephanie told “is absolutely amazing!”
Below is a picture of Stephanie, Bryce and governor LePage holding a jar of Maine-Tex salsa.
We would like to thank Stephanie for taking the time to answer our questions. We would like to wish her and Bryce the very best for their future.
Stephanie’s SPECIAL Autism Foundation can be found here http://specialfoundationforautism.org/
The Maine-Tex Grilled Salsa Facebook page can be found here https://www.facebook.com/MaineTexGrilledSalsa?fref=ts