 March 4th was a very sad day for the disability community, the country and the world. Judy Heumann, the star of the movie “Crip Camp” and known as the “Mother of the Disability Rights Movement”, passed away at the age of 75 in Washington, DC.Judy Heumann was a” lifelong advocate for the rights of disabled people. She contracted polio in 1949 in Brooklyn, New York and began to use a wheelchair for her mobility. She was denied the right to attend school because she was considered a “fire hazard” at the age of five. Later in life, Judy was denied her teaching license after passing her oral and written exams, but being failed on her medical exam. Judy sued the Board of Education and went on to become the first wheelchair user to become a teacher in the state of New York.Judy is now an internationally recognized leader in the disability rights community. She has been instrumental in the development and implementation of legislation, such as Section 504, the Individuals with Disabilities Education Act, the Americans with Disabilities Act, the Rehabilitation Act, and the UN Convention on the Rights of Persons with Disabilities which have been advancing the inclusion of disabled people in the US and around the world and fighting to end discrimination against all those with disabilities.” taken from www.Judyheumann.com So what do we do now that our “mother” has left us? We march and roll forth and we continue making the world a kinder, more supportive and more inclusive place for people of all abilities in her honor. Below are some ways to learn, to raise awareness and to be an ally to the disability community, especially to the Autistic community. As April is Autism acceptance month: Thank you to Caitlyn Cade, Samantha Chipetz and Alix Gould for compiling this list of terminology. Autism & Neurodiveristy Terminology and Resources Neurodiversity: Neurodiversity or being neurodivergent means having a brain that works differently from the “average” or neurotypical person. (The Cleveland Clinic) Neurodivergent: The term “neurodivergent” describes people whose brain differences affect how their brain works. That means they have different strengths and challenges from people whose brains don’t have those differences. The possible differences include medical disorders, learning disabilities and other conditions. (The Cleveland Clinic) Neurotypical: Neurotypical is a term that is used to describe individuals with typical neurological development or functioning. Instead of saying: “that person doesn’t have a disability, they are ‘normal’” – use words like: neurotypical, typical, NT (neurotypical) or typically developing, instead of “normal”. Disability/Disabled – A disability is any condition of the body or mind that makes it more difficult for the person with the condition to do certain activities and interact with the world around them. Using the words: disabled and/or disabilities rather than “special needs” is preferred by most disabled people. Autism: “Autism is a developmental disability that affects how we experience the world around us. Autistic people are an important part of the world. Autism is a normal part of life, and makes us who we are. Autism has always existed. Autistic people are born autistic and we will be autistic our whole lives. Autism can be diagnosed by a doctor, but you can be autistic even if you don’t have a formal diagnosis. Because of myths about autism, it can be harder for autistic adults, autistic girls, and autistic people of color to get a diagnosis. But anyone can be autistic, regardless of race, gender, or age. Autistic people are in every community, and we always have been. Autistic people are people of color. Autistic people are immigrants. Autistic people are a part of every religion, every income level, and every age group. Autistic people are women. Autistic people are queer, and autistic people are trans. Autistic people are often many of these things at once.” (Autism defined from ASAN – Autistic Self Advocacy Network) https://autisticadvocacy.org/about-asan/about-autism “High functioning” or “low functioning” vs. high/higher support needs or low/ lower support needs: Using the terms “high functioning” or “low functioning” aren’t preferred language in the Autistic/neurodiversity community. You could say a person has high/higher support needs or has low/lower support needs. Autism acceptance vs. Autism awareness: Autism “awareness” is knowing that someone is Autistic. Acceptance is including and accepting Autistic people for who they are and for all that they are. Identity first vs. person first language: “Identity first” language is preferred by most adult Autistic people (as opposed to “person first”). For example: “they are Autistic” instead of “they are a person with Autism”. Autism isn’t separated from the person – the same way we wouldn’t say: person with Norwegian, we would say “Norwegian person”. Here is a link to an explanation of language preferred by most, in the Autistic Community. (Of course, while this is preferred language for most Autistic people/ Autistic adults, always ask what is preferred language for every individual.) https://autisticadvocacy.org/about-asan/identity-first-language/ Infinity symbol vs. puzzle piece: Most/many adult Autistic people are embracing the infinity symbol (as opposed to the puzzle piece). The infinity symbol is often seen with the colors of the rainbow to show the infinite differences, variations and possibilities within the Autism community. The puzzle piece is a symbol used by the organization Autism Speaks: Autism Speaks is an organization that most Autistic adults do not support. Some reasons why the puzzle piece is offensive: it infantilizes Autistic people, the puzzle piece makes the statement that Autistic people are a puzzle to be solved and that they aren’t whole just as as they are. Autism Speaks is the organization that uses the “Light it up Blue” campaign, and while that organization is often in the media as a supportive Autism organization, they are not an organization most Autistic adults support. Autism Speaks mainly advocates for finding a CURE for Autism. There isn’t a “cure”. Autism has been around forever, and suggesting Autistic people need curing is hurtful. The only “cure” for Autism is, acceptance! https://autisticmama.com/do-not-support-autism-speaks/ https://autisticadvocacy.org/wp-content/uploads/2017/04/AutismSpeaksFlyer2020.pdf Gold (or red or taupe) vs. blue/light it up blue: Gold. The chemical symbol for gold is Au, which are the first two letters of Autism. The symbolic color gold is used to show the bright and shining future for Autistic people. Many/most adult Autistic people are embracing the color gold as opposed to blue. There are other campaigns: “wear red instead” or “tone it down taupe” (in opposition to blue/“light it up blue”). Some additional resources: @autisticselfadvocy https://autisticadvocacy.org/ The Neurodivergent Teacher (A great source for learning more about Neurodiversity), @the_neurodivergent_teacher https://m.facebook.com/theneurodivergentteacher Two Moms No Fluff podcast (A behind the scenes podcast for parents of kids with disabilities and for parents, friends and family of neurotypical people – our allies!) https://www.montclairlocal.news/2022/02/12/2-moms-no-fluff-a-montclair-momspodcast-on-raising-kids-with-disabilities/  Parent of the Month Julia Frances Julia Frances is a professor of Spanish and moved to the U.S. from Valencia, Spain over 30 years ago. She is the mother of 3 adult children, one of whom has Down Syndrome. She loves hiking and meeting new people. Describe your daily schedule in five words? Engaged, focused, determined, driven and learning What’s your favorite family activity and why? I love hiking because I like to be in nature and I like socializing with friends when I walk. I also like to hike for exercise. What’s your idea of a perfect day? My perfect day would be a day where I go outside to be in nature. I’d go for a nice walk where I don’t fall!, I grab a nice lunch, a book, and hang out under a tree where I just read and write.What’s your favorite song? Leonard Cohen’s Hallelujah. I love Leonard Cohen so much and have been a fan of his since I was 18 in Spain. When I want peace I listen to him. What is your guilty pleasure? Lately I am very interested in listening to philosophers on youtube. It helps me so much in many different ways. What is your most useful skill? I have a few: I can often see things before other people do. I am very intuitive and can often sense things about people that are both positive and negative. Another skill I have is that when I feel sad, I work hard to tell myself that it is temporary and take action to get out of that state. I find ways to get inspiration through reading books about philosophy and listening to music.What is the most challenging part of having a child(ren) with a Disability? It has been very challenging for me to be social and be with others because I am always with Zoe and not everyone is OK with that. I love to be alone with my daughter, however, so this is actually not always a problem. I am social but I also really enjoy spending time alone. What would you tell your former self when your child(ren) was diagnosed? I honestly never struggled with the fact that she had Down Syndrome. I was only concerned about the uncertainty of our future but Zoe has been my strength since day one. I would have told my former self not to ever tell her father that I was even pregnant. This may sound funny but it is not a joke. He has not been helpful in any way and has actually been a liability. In one sentence, what’s your best parental advice? Don’t focus on the disability, focus on your child’s strengths. Zoe speaks her mind truthfully, for better or for worse!, she is very kind and she loves me and everyone else unconditionally. That’s what’s most important. What is the silver lining to having a child(ren) with a disability? I learn so much from Zoe. I’ve learned patience, kindness, and to look for the beauty in people. There are so many wonderful people that I never would have met had it not been for Zoe.  If you would like to be featured in our newsletter Parent of the month, please write to us at info@2momsnofluff.com.  Recipe of the month: Tahini Spiced Chicken I love shopping at different International supermarkets for different types of ingredients. For my Middle Eastern ingredients, including Ras el Hanout, a tasty North African spice blend, I go on line or to Paterson, NJ. I highly recommend experimenting with this interesting spice blend on your fish and chicken. Tahini Spiced Chicken: 2 full chicken legs (thighs and drumsticks, connected or separated) 1 large onion, chopped finely 3 garlic cloves, minced 1/4 cup tahini paste 1 cup water 1 tsp Ras el hanout spice blend 1 tsp kosher salt 1/4 tsp black pepper 1 1/2 tsp butter 1/2 tsp olive oil Steps: Preheat the oven to 400 degrees. Sprinkle the chicken legs with the salt, pepper and ras el hanout. Set aside. In a large, oven-proof frying pan over low flame, heat up the butter and olive oil. Add in the chopped onions and stir until the onions are translucent. Add in the minced garlic and stir for a few minutes. Remove the garlic and onions, set aside and increase the flame to medium. In the same frying pan, add in the chicken and sear for a few minutes on each side until golden. Remove the chicken parts, set aside, and put the garlic and onions back in the pan with the tahini and water. Simmer for a few minutes until the tahini sauce thickens and add in the chicken, skin side up. Place the frying pan on the middle rack for 40 minutes and then under the broiler for 3 minutes until golden brown. Serve with rice, potatoes or by itself. YUM! Guest Article by Allison Darrow:  You Can’t Know What You Don’t Know… At least that’s what I try to remind myself AFTER I learn something I could have used, IF ONLY I had the knowledge or the experience at the time! Hi! I’m Allison Darrow and I’m a mom of two teen boys with two extremely different sensory personalities and speech and language profiles, including autism, dyspraxia, and ADHD. I’m also a speech-language therapist who views communication through a DIR/Floortime lens, and have recently become a licensed PLAY Project Consultant, which is a parent coaching model within a DIR/Floortime framework. No matter which hat I’m wearing, there are four questions I always try to keep in mind. Admittedly, it’s much easier with children who are not my own :). Is this child regulated?Regulation is the foundation for communication. It is that just right balance of calm and arousal, which gives us the most access to our speech and language. It is dynamic and changes depending on what internal and external factors are present, what we are sensitive to at the time, how much we’ve already endured, and what we can filter. Often, our children have a disconnected or reduced awareness of what is going on inside their bodies, so they don’t know when they are about to reach the boiling point and cross over that threshold until it happens. How can our children be expected to ask for a break, if they can’t feel in their bodies that they need one or they can’t access their language to ask for one? When a child is in meltdown mode-in the throes of fight, flight, or freeze- they simply cannot access their language skills until they are helped to calm, and they need someone to help them do it. I was just finishing up a session with a new little boy in a new time slot, when my regularly scheduled little boy bounded into the waiting space. He saw the new little boy in my office and immediately threw himself on the floor. Instead of directing him to get up, I told him I understood that it was a big surprise for him to see someone else with me when it was his turn, and that I didn’t like surprises like that either. I gave him the language for how I thought he felt. Then, he got up and walked into my office and was completely regulated. We need to be co-regulators for our children. They cannot do it alone. This brings me to my next question, because regulation and behavior are often related. Is this child using behavior to communicate what they cannot say?Unless your child is a teenager, your child is not trying to drive you crazy :). They are trying to tell you something. Chase the why and find the root of that behavior. When my son was younger, he would look at me and move his water glass to the end of the table while I was talking to another adult in a very loud, busy restaurant. Aside from being dyspraxic and loving to watch movement (a conversation for another time :), he was having trouble being in the environment and needed my help. He could not say, “Hey mom, this place is too loud and too busy, and I can’t cope with it, and I need a break.” He needed to use his behavior to get my attention. Telling him to stop moving the glass or threatening him with a punishment could have maybe stopped the behavior, but not the cause. The same thing happened when he was little and was chewing books at school. He didn’t need to be reprimanded or punished for chewing books. He was overwhelmed in his classroom, but couldn’t tell the teacher. He needed a time-in, instead of a time-out. The question I always try to keep in mind when I see behavior from children is: What are they trying to tell me that they can’t say? Hint: There is always something :). Is this child stuck in self-absorbed play? Children use non-traditional play – which can be verbal, too – because their sensory systems and motor planning constrictions are getting in the way. They can’t join you, so you need to join them where they are, and support those differences. What I love about DIR/Floortime and the PLAY Project is that they are play based, developmental models where you support the child’s individual differences and use the joy of your relationship with the child to help them move them into the different language levels. In the case of the PLAY Project, you teach and coach the parents to join the child’s play which builds the shared attention needed for reciprocal communication, and later, problem solving, and abstract language. If your child is at a developmental stage where piling up books is more fun than reading them, get in there and join their idea! Be the helper and add to your child’s pile. Be the narrator. Drop a beat on a drum and be the band to make up a song about what they are doing. Tickle your child with the book. If they are at the level where you can use obstructive play to expand, take the book and play hide and seek with it. Playing with your child has endless possibilities for connection, and imagination, and leads to different language levels along the way, so get in there, have fun, and join them in their play! Will Augmentative & Alternative Communication (AAC) devices/methods help this child access language?This is a broad topic. While I am far from an expert in this field, I encourage investigating AAC and included this question because I have seen parents become nervous when a communication device is recommended for their child, fearing their child won’t speak because they will rely on the device. Research has proven the opposite; the device enhances, rather than stalls or stops verbal communication, so don’t be reluctant to try one, and give it time. Expect your child to experiment with it at first, and don’t get discouraged if they press the buttons for a period of time. It’s developmentally the same as they would be doing with vocal play or babbling. Don’t just ask your child to use it to request desired items or food, because then it can become a chore. Use it with them. Keep it close by so you can make a quick one word comment, such as, “Wow,” or “Yuck.” Use it while playing. Use it while reading books. Use it when it’s time to do daily routines. Take turns using it so that it becomes something your child wants to use, so it helps build self esteem. There are SO many different methods out there, including various spelling methods, such as Rapid Prompting Method (RPM). Keep investigating. All children need a way to communicate! Thank you for the opportunity, Alma & Iris, to contribute to the 2 Moms No Fluff Newsletter! It was a pleasure writing this article and sharing my passions! If anyone would like to learn more, Profectum.org, ICDL.com, and PLAYProject.org are my favorite websites. All boast fabulous free resources, and videos to demonstrate techniques, in addition to offering a myriad of conferences and online classes. I love helping to chase the why, and if you are interested in speech-language therapy through a developmental lens, or PLAY Project coaching, I can be reached at darrowam123@gmail.com.If you or someone you know contributes to improving the lives of children with disabilities, we may be able to feature you (or them) in our newsletter. Please reach us at info@2momsnofluff.com. |