Studies estimate a staggering 50-75% of the 5.6 million autistic adults in the U.S. are unemployed or underemployed. Nearly 50% of 25-year-olds with autism have never held a paying job, despite having the skill sets and expertise to excel in the workplace.
This is why I am so inspired by the women, mothers and teachers like Kim & Noelle from Beanz & Co., Tia from Trev’s Trades, and Rachel from The Spotlight Project who have created businesses centered around providing employment opportunities to people with intellectual and developmental disabilities.
Not only are their missions (read more below) inspiring, their products are fabulous. I can attest to this personally as I am a regular at Beanz (their baked goods are soooo good) and I have several soaps from Tree’s Trades (bonus, you can get one by entering my podcast giveaway, and I wear my Spotlight bracelets everywhere I go because they go with everything.
If this is your first time hearing of these brands, let me tell you why they are amazing and how they are an example for each one of us of what it might look like to create employment opportunities that fit our kids’ strengths and needs instead of waiting for the world to make room for them.
They are examples of how Autism, Employment and Hope can become a reality.
BeanZ + Co is an inclusive coffee café in Avon, CT, employing equal numbers of individuals with and without intellectual and developmental disabilities (IDD). Beanz was co-founded by Kim and Noelle, mothers to adults daughters with Down syndrome, who met when their children were toddlers. Kim and Noelle founded Beanz as their daughters were aging out of the educational system in order to provide them and other young adults with disabilities the opportunity to work alongside typical peers.
In addition to employing and coaching employees with disabilities, Kim & Noelle educate and consult with other businesses to encourage them to follow their lead.
To support Beanz & Co build its new kitchen for its NEW location, visit its GoFundMePage here.
Tia From Trev’s Trades: Where Autism Meets Potential
Tia is the mother of Trev, a young adult with Autism and other disabilities. When Trevor was a young man, Tia saw the need for him to engage in “real work.” Harnessing her son’s interest and skills, Tia created Trev’s Trades to provide her son with meaningful employment and the pride of a product well made.
To win a handcrafted soap fro Trev’s Trades, rate and review The Autism Mom Coach Podcast here and email me the title of your review at email@example.com.
Rachel from The Spotlight Project
Rachel works as a physical therapist in a special needs school treating students up to the age of 21.
According to the website:
“Her work in the school system led to her interest in discovering what career opportunities were available to her students as they graduated into the workforce. What she learned is that the unemployment rate for adults with disabilities is 80%, and many of the jobs available do not offer a creative platform, promote growth, or give the individual a voice to speak. Based on these findings, she had two choices; dwell on the disappointing reality, or do something to ignite a change.
This led to the creation of The Spotlight Project.”
The Spotlight Project employees individuals with intellectual and developmental disabilities to create handcrafted bracelets. As part of the Spotlight project, each team members plays an integral role in all stages of the bracelet making process from brainstorming color and design ideas to the threading and crafting the finished product.
Autism, Employment and Hope is possible. Like so many other things on this Autism journey, employment for our kids may not come in the package that we want or imagined. This is OK! Like Kim & Noelle, Tia and Rachel, we can dwell on the disappointing reality, or do something to ignite a change.
P.S. To win a handcrafted soap fro Trev’s Trades, rate and review The Autism Mom Coach Podcast here and email me the title of your review at firstname.lastname@example.org.
P.P.S. To receive the 7 Truths Every Autism Mom Needs to Know, subscribe here.
This week my client, Melinda, came to me with a classic example of burnout & people-pleasing, when she reported that she was burnout because, in her words, “everyone expects me to drop everything.”
Melinda explained that for the last 3 weeks, she had been single-handedly balancing the dizzying responsibilities of her full-time job while acting as the full-time care taker for both her adult son with Autism and mother in law with Muscular Dystrophy.
She was ready to explode and feeling very angry and resentful because, “everyone expects me to drop everything.”
Maybe they did.
But the fact is that Melinda also believed, on some level, it was her duty as a good mother, wife, daughter, daughter-in-law, sister and sister-in-law to drop everything for the people in her life, no matter how inconvenient, unappreciated or unreciprocated her sacrifices were.
Women Are Socialized to Put Themselves Last (or Never)
Melinda is not alone. In fact, she is in the company of the millions of women who have been socialized since birth to be in service of and put other people’s needs before their own, especially if those people are their children, spouses, parents and siblings.
We pick the pain of doing more over the discomfort we will feel if someone else is upset with us or, OMG, thinks we are LAZY!
And the result of this insidious and often unconscious belief is that we drop ourselves.
Our Thoughts Create Our Results
During our call, I used the self coaching model I learned during my certification with The Life Coach School to show Melinda how her unconscious belief that she should drop everything for the people in her life was resulting in her dropping herself.
It was not the family member asking a favor that caused Melinda to feel obligated, or caused her to say yes when she wanted to say no. It was her belief that other people expected her to drop everything and her fear of what other people would think if she set a boundary.
This is good news because, when we view burnout as being caused by other people asking us for favors, then our mental, emotional and physical well-being is completely out of our control.
This is not the case. We have agency. We have choice. And, to exercise it, we first need to become aware of the ingrained patterns of people pleasing that result in us saying yes to others and dropping ourselves without a second thought.
As a single mother of a teenage with Autism, OCD and GAD, I understand what living in survival mode is like. Some days/weeks/months can feel like a constant struggle to get through the never-ending challenges of parenting a child with special needs. From sleepless nights to meltdowns to medication changes, it can be overwhelming to say the least. But, there are ways you can bring some ease to survive survival mode and take care of yourself in the process.
Here are the ABCs of surviving survival mode:
Allow it to be messy.
When I am living in survival mode, the first thing to go is my living space. The laundry piles up, the dishes are stacked to the ceiling, and the cats are feeding themselves out of their bag of food in the closet. It’s fine.
Give yourself permission to let it be messy without judging yourself for it. Maybe your kitchen looks like a war zone, maybe you forgot your best friend’s birthday, maybe your dog is taking herself for walks — it is ok. Remind yourself that it is more important for you to lessen you load than to live up to some perfectionist fantasy about what your life (or house) should look like.
When you’re in survival mode, it’s important to prioritize the basics. That means if something can wait, let it. Unless it’s medically necessary, anything that can be cancelled, rescheduled, or delegated should be. Instead, focus on getting enough sleep, staying hydrated, and eating healthy foods. Taking care of your basic needs will help you better manage your stress and increase your capacity to support yourself and your child.
Commit to your essentials.
Self-care is usually the first thing to go (if it was even there in the first place), when we are in survival mode.
Ask me how I know! During my son’s inpatient hospitalization, I looked and acted like a complete zombie. I did not eat well, I did not sleep and I spent my days and nights in fight/flight mode field by caffeine, sugary snacks and worry.
In fact, as special needs parents, is it really easy to dismiss self-care because so many of us believe that we don’t really matter. We believe that our kids matter, their needs matter, and we can wait.
Well, that is not the case. First, we do matter. Crazy, right? Second (even if you are not buying that you do matter), our wellness is critical to our children’s wellness. Whether you do it because you believe you matter or because you want to maximize your ability to care for your child, make time for yourself while you are in survival mode.
Pick 3 things: You can do this by picking three things that you will make time for every day, no matter what. These are your essentials. Maybe it’s taking a hot shower, going for a walk, or practicing mindfulness. Whatever it is, make it a priority and commit to doing it every day.
Survival mode is a challenging place to be, but it’s not impossible to navigate. Remember to allow things to be messy, prioritize the basics, commit to your essentials, and give yourself grace. Above all, remember that you are doing the best you can and your best is always good enough.
Finally, and perhaps most importantly, commit to having your own back. Being a mom of a child with autism can be incredibly challenging, and it’s easy to second-guess yourself or feel like you’re not doing enough. But, it’s important to give yourself grace and remember that you’re doing the best you can with the resources you have.
NEW BRITAIN, Conn. (WTNH) — 14-year-old Ben Ciufolo and his mom Lisa Candera are on a journey. Ben opened up about his inpatient stays at the Hospital for Special Care’s inpatient autism center.
News 8’s Lisa Carberg asked if it helped him.
“I always have my hard days but it’s at a level where it’s manageable because we’re all going to have a bad day. When something really hard happens and that will happen, I want to be kind of like the same… I have all these tools I can use,” Ciufolo said.
Ciufolo and his mom moved to Simsbury where he was acclimating well. But when COVID-19 hit, his behavior and coping skills declined. They starting having trips to a local emergency room in search of help.
That is where Candera learned about the Hospital for Special Care’s Autism Inpatient Unit and got Ben admitted twice. Finally, she felt like the doctors there truly understood their journey and listened.
“I have been put off a lot by doctors saying things like, ‘well, it’s COVID, everybody’s stressed, everybody’s anxious,’ type of thing. He really understood the gravity of the situation and he was ready to act, and it just felt like finally, right, like a big sense of relief,” Candera said.
One of the skills of an Autism Mom is our lightning quick reflexes. Our kids move quickly and so do we in hope of staying at pace or just a half step behind. But sometimes, it is just as important to know when and how to Slow It Down.
This is especially true when you are feeling triggered. When we are feeling triggered, our brain releases chemicals into our body to enable us to fight or flee. Our bodies are in a stress response and a central feature of a stress response is speed. Our talking, moving, breathing and thinking all get faster. All in service of keeping us alive. This is essential if you are outrunning a tiger. But much less helpful when you are quarantining with your 13-year-old who is refusing to log in for afternoon classes.
In these cases, our lightning quick reaction of shouting at our child to “do it now” or cajoling them with threats of lost video time are not keeping us alive, they are keeping us in conflict with our child, ourselves, or both.
This is why it is important to create space between the trigger and our response. As the Holocaust survivor, Viktor Frankl, put it, “Between stimulus and response, there is a space. In that space is our power to choose our response. In our response lies our growth and our freedom.”
How to slow it down
When safety permits, in this space between the trigger and our response, we take every opportunity we can to slow it down. Here are some do’s and don’ts you can use to adjust your response:
Don’t stay and fight
Do walk away and breathe
Don’t respond immediately to each outburst or provocation
Do count to 10 or 100 before responding
Don’t project what is happening now into the future (i.e., “if he is doing this at the age of 5, what will it be like when he is 10, 15 or 20”; “if she can’t take turns now, she will never have friends”)
Do stay in the present with reminders like, “right now, it is like this”
Don’t impute character traits based on behaviors (i.e. “she is a bully”, “he doesn’t care about us”)
Do remind yourself that behaviors are not personal
Don’t try to be a mind reader (i.e, “other people think he is weird,” “other people are judging us”, “other people have it easier”
Do stay out of other people’s business
Repeat this is often as needed to create, maintain or return to a neutral state.
Harness your power
The more we do this, the more we interrupt our patterning and create new neural pathways, and new and more intentional ways of responding when we are triggered.
The more we do this, the more space we create between the stimulus and our response. And therein lies our power.
We can’t control Autism. We can’t control our kids. We can’t control other people.
We can control ourselves. Of course, there will be times when we don’t pause, and we react. And when that happens, we will give ourselves grace.
During one of my presentations called, “How to Regulate Yourself While Your Child is Melting Down,” I shared a story about a difficult decision I made on the opening day of ski season. We had been at the lodge for less than 2 hours when my son’s skis disappeared! ⠀⠀⠀⠀⠀⠀
As I was describing the situation, my son Ben asked to say a few words: “When you have an expectation about how something should go and it does not work out, it can be really hard to accept.” Damn right!
When things are not going the way you expected, planned, or wanted, you do have some choices.
You can fight against
You can resist it
You could even try to power through it, or you can drop your agenda and drop into what is happening right now
2020 level set all of our agendas
Think of 2020 as the grand lesson of dropping our agendas. We did not expect COVID.And even when we did learn about it, we expected it to be a two-week interruption.
We expected our kids to go to school in person.We expected to go out to dinner, visit relatives, go on vacation, have birthday parties, and shop without a mask. Well, we were mistaken. What we wanted, what we expected, what we believed should be happening, wasn’t happening.
Learning to deal
Dropping our agendas means loosening our grip on how we believe it should be and dealing with life as it is. When we drop our agendas, we take the pressure off both ourselves and our child and we open up space to do the Next Right Thing.
For example, when my son was in elementary school, my agenda was for him to attend every birthday party he was invited to and stay for cake. This agenda was tested when, after 90 minutes of play time, my son was in sensory overload.
Being at the party was not enough. He wanted to open the presents, blow out the candles and sit in the chair of honor. But we just had to stay for cake. After all, it would be rude to leave. And, I don’t want to be that parent or my son to be that kid who made a spectacle of themselves. I wanted him to be invited again. I wanted him to have friends.
So we stayed. Instead of sitting around eating cake and chatting with other parents, I was chasing Ben to ensure that he did not overturn the cake, open presents or grab goodie bags from other children. It was exhausting.
As time went on, I made a shift. I could either fight what was happening or decide to call time when my son got to the point of no return. This is what it means to Drop your agenda.
Let go of how you think it should be and drop in to how it actually is and decide, now what?