| Hello readers! In the spirit of February Valentine Love, we thought it would be a nice idea to start a pen pal program. It’s very simple! If you are interested for your child(ren) please Log on to our confidential 2 Moms No Fluff support group on Facebook here. Describe your child’s interests and writing/dictating ability, whether it’s their own writing, drawing and/or AAC. We want matches to be mutually beneficial. If you find a compatible match ex: an elementary school child into Star Wars, reply to the parent’s post, and agree upon a manageable back and forth (ex: one letter, once a month). We don’t want any child to be left disappointed or frustrated.Enjoy watching your child’s happiness as they receive the letter! |
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| Parent of the Month |
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| Meet Randi: Goodman Randi is a childcare provider among other things. She is one of four parents raising 9-year-old autistic, ADHD+ twins Josie and Ryan. When she isn’t in New Jersey balancing work and family, she is spending her summers at Surprise Lake Camp, swapping one chaotic lifestyle for another. Randi and her family are planning to travel and study abroad in the fall. She looks forward to blogging about the wild adventure and checking in with the Montclair Friday Group via zoom! Describe your daily schedule in five words? Chaotic, noisy, overstimulating, challenging, rewarding. What’s your favorite family activity and why? We love to snuggle. We will all pile up on the couch for a movie, for board games, to read books, to play video games. There’s very little personal space when we are in the living room. Whether we’re all doing something together or it’s a lot of parallel play, we’re definitely all snuggling up next to one another. What’s your idea of a perfect day? Any day where my kids work/play together and we all get to recap and talk about what we liked about the day is a win in my book. I love being able to tell them what they did that day to make me proud. I love watching them glow when they feel proud. I love hearing their version of how the day went too! Sometimes that day is one where I worked all day but came home to everyone cleaning up after dinner and they’re excited to tell me about everything. Sometimes that day is a sleepy, lazy weekend day where we all lounge around and maybe do a puzzle together. Sometimes that day is a day where we had to run a million errands or go to a doctor’s appointment or something but managed to squeeze in a trip to 7-11 for a slurpee and a “good job team!” at the end. |
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| What’s your favorite song? What I’m listening to at any given moment is dictated by my mood. I listen to just about everything and have a lot of comfort songs, but my playlist varies from day to day. When I was younger, I thought I’d sing Joni Mitchell’s Circle Game to my babies each night, but I ended up singing Home by Phillip Phillips instead. What is your guilty pleasure? Video games! I love that my kids like playing video games and that we can play them together. It gives me a good excuse. What is your most useful skill? I am a pretty classic ADHD “Jack of all trades.” I tinker with things a lot and can fix a lot of things around the house. I tend to fall into a lot of deep dive Google rabbit holes and retain a lot of random information that way, so I always have some odd solution to offer up. This comes in handy a lot because I really like to help people and I’m always looking for a solution to any inconvenience or difficulty that someone has. What is the most challenging part of having a child(ren) with a Disability? Probably the constant work of trying to make sure they’re getting what they need. Which is what parenting is for everyone, right? Except the benchmarks are different and there is no standard to measure against because they’re so far from typical. The constant questioning of “are we doing this right?” And “Is this a phase we should ignore and let it cycle on its own or a behavior we need to focus on to change?” “Is this because she’s 9, because she’s my kid, or because she’s autistic?” “Is he sad or hurting or sick or just enjoying sitting there staring out the window?” All of their behaviors are communication. So much of their noise is not communication. Figuring out what they’re communicating hasn’t come easy. We work on it every day. What would you tell your former self when your child(ren) was diagnosed? When my son was diagnosed but my daughter was not, I’d have told myself to notice her behaviors too. I’d have started her therapies earlier. I’d also tell myself to take more videos and to save them because I love watching them now. In one sentence, what’s your best parental advice? Forgive and appreciate yourself as much as you can and remember to apologize to your kids and express your appreciation TO them. What is the silver lining to having a child(ren) with a disability? I understand my kids in a way I can’t even explain. We have a connection that I don’t know if I’d have with them if they were neurotypical. They know that I am here to protect them and help them navigate the world. They know that when other people don’t get them, I do. We also have an amazing group of people in our lives that we may never have met otherwise. Friends who understand us in a way that typical families wouldn’t. And friends who accept us as many other families don’t. Autism and adhd have made us a pretty “as is” family and for what that’s worth, I think our friends are more raw and genuine for it. If you would like to be featured in our newsletter Parent of the month, please write to us at info@2momsnofluff.com. |
| Activism |
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| Disability activism is vital for society to evolve, to change laws and policies to further meet the needs of some of the most vulnerable in our communities. Activism can also, however, have a profoundly positive affect on the people who are involved in taking the steps to make the lives of our children safer, more inclusive and more meaningful. Connecting with others with similar situations and goals, whether it is remotely or in person, can be just the thing to break the cycle of isolation that many in the disability community live with on a daily basis. If you as a parent or family member of a child with a disability weren’t an activist before having a child with a disability, chances are you will become one after your child is diagnosed. As overwhelming as this may sound to someone who is soft spoken or reserved by nature, they/you may be surprised to find that activism comes in many forms, from anonymous advocacy performed in the safety of one’s own home, to very public acts in the community. For many In an often ableist culture, activism can decrease the shame and improve the self esteem of those living with disability and their families. Before discussing advocacy and activism it may be helpful to explore your comfort level regarding disclosure of the disability. Some families may feel a need to contain information about their family members’ disability while others are more comfortable being open about it. This may be more complex with an invisible disability where the family member with a disability may pass as “typical”. If this is the case, it is important to respect your journey and start where you feel most comfortable. This may mean giving yourself time to process the diagnosis or it may mean participating in more anonymous, private forms of activism, at least until you are more comfortable with disclosing the disability publicly. Some examples of disability activism that may feel easier or safer can be signing a petition on- line, writing a letter to a politician, or simply using people-first language when speaking or writing. Sharing someone else’s activist social media post or even wearing a tee shirt with an anti-bullying slogan, for example, can be a form of activism. Reading books about disability in a child’s classroom can be a simple way to encourage inclusion and kindness. Donating money, time or talents to disability causes can also be ways to get involved in a more private manner. As we get more comfortable or have more time to get involved, our activism can take on other forms such as attending rallies and going on marches, organizing rallies and parades, writing articles for local or national newspapers or magazines or speaking at town council and board of education meetings. Joining a support group is not only important for feeling like a part of a community, but there is also more power in numbers if the group takes on activist tasks. If you cannot find a support group, start your own! If your family members feel emotionally supported, you will probably have more emotional bandwidth to take on acts of advocacy that can sometimes be challenging. Some other more public advocacy opportunities may be asking others for donations to causes, asking others to write letters on your behalf, correcting and educating others when they use ableist or offensive language. When asked, answering people’s questions about disability is a wonderful way to educate in the hopes of understanding and celebration of differences. Most importantly, simply being seen and participating in some or all parts of community life are forms of activism. Exposing others to a person with a disability in daily life, by traveling, being in schools and community programs, even going to the supermarket and restaurants is showing others the spectrum of diversity and that in itself is a form of activism. The more inclusion there is, the more familiarity society will have with diversity and the ripple effect of one person’s advocacy will help others with disabilities down the road. |
Recipe of the Month Banana Chocolate Chip Muffins Try these simple and tasty muffins that make use of your overripe bananas. These muffins freeze beautifully. Banana Chocolate Chip Muffins: Wet: 3 very ripe bananas, mashed, 2 tsp vanilla extract, 1/2 cup butter or shortening, softened (I use Spectrum which has no hydrogenated oils) 3/4 cup brown sugar, 2 eggs, beaten. Dry: 2 cups white flour, 1 Tbs baking powder, 1/2 tsp salt. Mix in:1 cup semisweet chocolate chips Steps: Preheat oven to 375 degrees. Grease a muffin tin. In a large bowl, combine the wet ingredients. In another bowl, combine the dry ingredients. Add the dry to the wet just until combined and mix in the chocolate chips. Fill the 12 muffin tins with equal amounts of the batter and bake on the center rack of the oven for 20 minutes or until a knife in the center comes out clean. |
| Guest Article Rewritng Normal by Cathy Shields |
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| Catherine (Cathy) Shields writes about parenting, disabilities, and self-discovery. She is a retired educator with an M.S. Ed in Exceptional Education. Her experience includes networking and dealing with children and families of persons with disabilities. Cathy and her husband reside in Miami, Florida, where they raised three grown daughters. They kayak, ride bikes, hike in the Everglades, and visit the two grandchildren who live nearby.Every weekend, I pick up my daughter Jessica from her group home and bring her to our house to stay for a couple of nights. She moved to the group home when she was twenty-eight. Now she is almost forty. The years of continual caregiving and planning led to the eventual move to the group home and influenced the narrative framework for my debut memoir, The Shape of Normal. Most parents of children with disabilities know it isn’t easy having a child like mine. In my case, my sweet daughter might ask me the same question over fifty times. My guess is her cognitive abilities are about the age of a five-year-old. She can’t read, but she has learned how to use a smartphone. Every morning she calls at 6 am, and if I don’t pick up, she’ll leave 15 or so voice messages saying, “Mom call me.” Or “Mom, member you say you pick me up this weekend?” I remind her of course I will, but she keeps asking. During the weekend at home, I try to respect Jessica’s desire to be as independent as possible. This can be extremely challenging when she decides she doesn’t want me to interfere. She doesn’t require help with the skills of dressing and is mostly able to manage her personal hygiene, but I admit I’ve often allowed her to go to bed without following up on whether she has adequately brushed her teeth or washed the shampoo out of her hair. Taking care of her has required enormous patience on my part, patience that gets quickly depleted. While Jessica often wakes in the wee hours of the morning (she claims she can’t sleep) – when she’s at the group home, the house manager sends her back to bed. Whether or not she does go to sleep, is another matter. But when she’s at our house and gets up before dawn, she’ll turn on the TV and wait until we’re up. If she’s hungry, she will go into the cabinet and take chips, or pour herself a bowl of cereal. Sometimes I’ll open the fridge to find her leftovers, a bowl of sliced turkey covered with half a bottle of ranch dressing. This past weekend, I heard her rummaging around in the kitchen at 1 am. I got up and told her she had to go back to sleep. “At least until five.” But the problem with Jessica is she can’t tell time. It frustrated both of us when I asked what time it was when she got out of bed. I had a feeling she was up all night. Everything she did the following day contributed to my annoyance, and I blamed myself for being intolerant. As I drove Jessica back to the group home, she kept up her running commentary. “You pick me up on Friday?” The fifth time she asked, I raised my voice with an emphatic yes. Then she switched to, “I sorry Mommy.” On repeat. When I was ready to drop her off, the house manager was busy in another room, so I sat down and waited. One of the housemates, a young man who is nonverbal, kept approaching me and verbalizing what sounded like “Mom” or “Ma.” It seemed he kept gesturing for me to talk to him. I will usually acknowledge him with a nod, but I’ve never bothered to engage. He remained standing in front of me, demanding my attention. Something inside shifted and that was my moment of clarity. I imagined what it must be like for him, and for all the individuals in that house. I put my hand on his arm & rubbed it and started saying whatever came to mind. I told him I was Jessica’s mom, that his mother and I were friends, and that I wrote a book about Jessica. As I focused on his face, his open mouth, his slack jaw, and stared deeply into his eyes, perhaps what I saw resembled God. I turned to my daughter, realizing I was no longer angry. In fact, I suddenly felt like I didn’t have to hate myself for being so intolerant. It’s okay to feel angry. What I didn’t expect was for that anger to be transformed into something that resembled love. |
| 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. |