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Autism Awareness Month

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Welcome to April! This is one of my favorite times of the year…winter is over, my youngest son and husband have birthdays to celebrate, and we start the final marking period at school before summer vacation. It’s the home stretch! April is also the month when the whole world lights up blue for autism awareness. Read my thoughts on why we need more than just awareness on the Richmond Moms Blog here.

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Pink Pancakes!

valentines_headerHolidays make me feel young at heart. Cheeky cards, garland, lights, and decorations make me giddy. It’s probably all Pinterest’s and Target’s fault. But as much as I love making every holiday special for my kids (whether they want me to or not), Valentine’s Day sends me over the freaking edge. Yes, my boys love chocolate and candy and parties, but the pomp and circumstance of card exchanges and all-things-heart-shaped are lost of them. So I sat at the dining room table several nights in a row decorating shoe boxes and bags, addressing cards, and preparing gifts for teachers, aides, therapists, and bus drivers (so I don’t look like the only deadbeat parent in a sea of hyper PTA moms). Let me just add that general education class, autism classmates, speech therapists, occupational therapists, instructional aides… We went through a ton of valentines.

Okay, enough complaining.

First challenge this year was finding valentine cards my boys actually liked. They may be 9- and 7-years old, but developmentally they enjoy the same characters as their 2-year-old brother. They would be completely happy with Elmo or Thomas, but I feared passing those out in an elementary school classroom would be social suicide. It is hard to find unique valentines at the usual box stores, and I didn’t want to spend a fortune. Thank goodness for Etsy! Thing 2 loves Pete the Cat books, and I downloaded these valentine cards for him. Thing 1 agreed to these Star Wars cards. I was able to personalize both at no extra charge, then printed them on cardstock at Office Max.

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My idea for pink pancakes for tonight’s dinner came from Jessica Seinfeld’s Deceptively Delicious cookbook. She has some inspiring (and insanely complicated) ideas for sneaking vegetables into foods kids typically love, and I usually keep roasted butternut squash or carrot purees in the freezer to toss into pasta sauces and pancakes. While Seinfeld’s original recipe uses beet puree and ricotta combined with store-bought pancake mix, I used my standard oatmeal pancake recipe and added beet to it. Roasting beets is super simple… Just trim the leaves and scrub the beets clean, wrap in aluminum foil, and roast at 375 for approximately 45 minutes. Let them cool enough to handle, trim and peel, and then you can slice, dice, or puree. For creating the puree, add 1/2 to 1 cup water to create a smooth consistency. For easy use, I freeze small portions in an ice cube tray, then thaw (more like microwave) what I want to use.

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Pink Oatmeal Pancakes

Ingredients:

  • 1 cup unsweetened almond or cashew milk
  • 2 eggs
  • 1 tsp. vanilla extract
  • 1 tsp. baking powder
  • 1/2 tsp. cinnamon
  • 1 pinch sea salt
  • 2 cups old-fashioned rolled oats
  • 1/4 cup beet puree
  • butter, coconut oil, or cooking spray for the griddle

Combine all ingredients (except butter) in a blender and blend until smooth. Heat up your griddle and melt butter or oil of choice. Ladle approximately 1/4 cup batter onto that sizzling hot griddle, and cook for 2-3 minutes per side. Top with maple syrup, powdered sugar, fresh fruit, whipped cream, or all of the above.

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Okay, okay…I used my heart cookie cutter. I was only entertaining myself at this point. We also ate turkey bacon and grapes because there’s nothing more fabulous to my children than breakfast for dinner, especially when it comes with a side of powdered sugar.

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A Call to Action!

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UPDATE 1/20/17… Thank you so much for sharing this post and joining the movement to #CrushTheCap in Virginia. There were very disappointing developments, and here is the latest message from Virginia Autism Project: “The Autism Insurance Initiative (HB1995), sponsored by Delegate Greason, has run into insurmountable opposition in the 2017 House of Delegates. This upsetting situation presents us with no viable solution to keep our bill alive in this session. We are extremely disappointed and sad for the many Virginia families who have a loved one on the autism spectrum and who struggle to get their children medically prescribed services they so desperately need. Those of us that have worked on this issue for many years are not surprised that it will take multiple attempts to pass our bill lifting the age cap. The Virginia Autism Project leadership remains committed to ending this injustice. Providing insurance coverage for our children who have a diagnosis of Autism from 2-10 years of age and excluding all others is unacceptable. Virginia families deserve better. Please consider this a YEAR-LONG CALL TO ACTION. VAP, along with our friends at Autism Speaks, will continue to reach out to educate and lobby those we elect and send to Richmond in an effort to ensure all families’ voices are heard. Please send an email or letter to your Virginia Senator and Delegate and tell them that HB1995 was obstructed this year, but YOU EXPECT THEIR SUPPORT IN 2018 TO END THIS DISCRIMINATION. Also, please send a note of thanks to Delegate Greason (DelTGreason@house.virginia.gov) for his unwavering support.”

House Bill No. 1995 was introduced in Virginia’s General Assembly this month to lift the age cap on mandated insurance coverage for autism spectrum disorder. Coverage in our state is currently capped at age 10. Two years ago, a nearly identical bill was introduced and struggled to survive the House and Senate Commerce & Labor Committees. When the session ended, the age limit was raised from 6 to 10…baby steps, but an improvement nonetheless. We all know autism does not magically disappear when a child reaches his 11th birthday. All individuals impacted by autism deserve the services prescribed by medical professionals, regardless of age, including assessments and behavioral, speech, and occupational therapy. These therapies (especially ABA) are life-changing for my family. We went from asking ourselves, “What if he never talks?” to hearing Thing 1 sing songs, read books, and ask for help when needed. Why? Because of intensive ABA. Thing 2 started Kindergarten at our home elementary school and is completing work on grade level. Why? Because of intensive ABA. We are excited to enroll Thing 3 in the same early education autism program this summer knowing this evidence-based treatment will make a meaningful difference in learning language, social skills, emotional well-being, and the ability to generalize those skills across different settings.

So why should YOU support HB1995?

According to VCU’s Autism Center for Excellence, the average age of autism diagnosis in Virginia is between six and seven years of age, and the GW Autism Institute‘s findings indicate that adolescence is a time of tremendous brain reorganization and plasticity. Adolescents and young adults greatly benefit from treatment, and there are opportunities to better the lives of individuals at ALL life stages. Those opportunities should not be denied because our great Commonwealth has stamped an expiration date on our children!

Covering evidence-based therapy is also fiscally responsible. The Virginia State Corporation Commission reports annually to the General Assembly regarding the financial impact of mandated health insurance benefits.

  • The 2014 average claim cost per member related to mandated coverage of ASD is $2.66 per year (22 cents per month).
  • The 2015 average claim cost per member related to mandated coverage of ASD is $3.50 per year (29 cents per month).

Actual claims experience from states that have at least three years of autism insurance coverage or no age restrictions indicate an average premium impact of less than 50 cents per member per month — about the cost of a postage stamp! Yet cost-benefit analysis shows that if children with autism receive intensive services at a young age, the overall savings are significant. The provision of intensive services (like ABA) can result in an estimated cost savings ranging from $187,000 to $203,000 per child ages 3-22 years, and a total lifetime savings of $1-2 million dollars.

Would you be willing to pay the price of a postage stamp to save $2,000,000? To make a positive impact the lives of children and adolescents with autism? If you live in Virginia, it is imperative that you contact your state legislators to support meaningful autism insurance reform. To find contact information for your state delegate and senator, click here. Also call, e-mail, or visit members of the House Commerce & Labor Subcommittee #1 and urge them to vote YES on HB1995. Feel free to join me and Thing 1 at the General Assembly on January 31 for Developmental Disability Advocacy Day.

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Be loud. Be heard. Be the change!

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Ode to the Instant Pot

This post contains affiliate links.

This machine is incredible…life changing…inspiring…time saving…and overall the best kitchen appliance ever purchased. I put it through a major workout over Thanksgiving break making gallons of bone broth (recipe below) and prepped 20 freezer meals that can be cooked in 20-30 minutes  from freezer to table. I basically cooked dinner for the rest of the year.

Even better, it’s a crazy good deal right now.

Before hearing about the Instant Pot, I did not even know how a pressure cooker worked. A slow cooker cooks food with heat over a long period of time, but in a pressure cooker, food and liquid are sealed and come to a boil. As steam/pressure builds, food cooks faster. The Instant Pot is an easy-to-use multi-functional cooker that works as a pressure cooker, slow cooker, rice cooker, yogurt maker, steamer, warmer, and saute pan. There are preset programs for cooking soups, meat/stew, rice, beans/chili, porridge, poultry, multigrains, steaming, and slow cooking, as well as dual pressure settings. It is made of a 3-ply stainless steel cooking pot and comes with a steam rack, measuring cup, and serving utensils. Because I never used a pressure cooker before this one, it took some time getting used to the process. I looked to Pinterest for inspiration, converted my slow cooker favorites, and tested a few recipes from The Instant Pot Electric Pressure Cooker Cookbook. When I cooked perfect, easy-to-peel hard boiled eggs and in seven minutes, my mind was blown. Know what else took seven minutes? An entire spaghetti squash. Seriously. The Instant Pot was also great for cooking dinner on those hot summer days when I didn’t want to turn on the oven or stand over the grill. After spending a month with my Instant Pot, I sold my Crock-Pot.

Now we are heading into winter, and my Instant Pot made an amazing batch of bone broth. I bought a bag of beef marrow bones at Whole Foods for our dog shortly before she passed away, and that bag has been in the freezer since July. I threw those on a sheet pan and roasted the bones for 45 minutes at 375 degrees. This is optional, but roasting bones first helps create a broth with richer flavor.

Bone Broth:

Ingredients:

  • 1 onion, quartered
  • 2/3 cup chopped carrots
  • 2 celery stalks, chopped
  • 1 head of garlic, halved
  • bones (marrow bones, soup bones, chicken/turkey carcass, whatever)
  • 2 tbs. apple cider vinegar or lemon juice
  • water

Place vegetables and garlic in the Instant Pot first, then add the bones. Drizzle apple cider vinegar over the bones and let sit for 20-30 minutes; the acid helps extract minerals from the bones. Then fill the pot with enough water to cover the bones, but do not exceed the max fill line. Cover and seal the Instant Pot, select the “Soup” setting, and set the time at 120 minutes. After pressure cooking is done, turn off the Instant Pot and let it naturally release for 15 minutes before venting. Strain the broth and you’re done…maybe.

Instead of bagging and tagging my broth at this point, I returned the strained broth to the Instant Pot and hit the “Saute” button. This brought the pot to a boil and I reduced the broth by approximately 1/3 to create a concentrate. Then I let the broth cool, poured into ice cube trays, and froze to create individual portions that can be reconstituted with hot water through cold and flu season.

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Mic. Drop.

Bone broth contains easily absorbed minerals and amino acids, like calcium, magnesium, phosphorus, arginine, glutamine, and glycine. It supports the immune system to inhibit infections caused by cold/flu viruses and fights inflammation. The gelatin supports proper digestion. It’s the super food my husband hates…but I don’t care, he is still going to drink it and shut up about his man cold.

I followed this same process using the Thanksgiving turkey carcass to make turkey and rice soup. I picked off and chopped what meat remained on the carcass, then used the bones to make stock. Once the stock was strained, I returned it to the Instant Pot and added diced carrots, celery, onion, garlic powder, salt and pepper, two bay leaves, and the turkey meat and simmered for 30 minutes. I added one cup of rice at the end and the entire pot produced three meals worth of soup (dinner for us, dinner for my parents, one for the freezer).

So how can the Instant Pot be improved? Well, I have my eye on accessories at this point…like the Glass Lid and Yogurt Cups. I have also been reading articles about using the Instant Pot for canning, but as much as I love mason jars, that may be too ambitious for me.

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Conscious Un-Halloweening

It’s that time of year again when leaves change color, mums are abundant, and pumpkin spice rules the world. The back corner of Target was in shambles today as families bought last minute fall decorations, costumes, and extra bags of candy. As I trotted around Target waiting for a prescription refill with Thing 3, I bumped into a few people I know who all excitedly and sweetly asked the same question: “What are your kids going to be this year for Halloween?”

Ah. Nothing.

We had a blast last year when we decided to ditch the Halloween fanfare. Thing 3 stayed home with the grandparents while my husband and I took Things 1 and 2 to a college football game. They ran around campus, danced to the marching band, stuffed their faces with pizza, and skipped and smiled the whole night.

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Because October 31 falls on a school night this year, we need to keep plans low-key and local; but again, there will be no itchy costumes or mandatory trick-or treating for my brood. Maybe we’ll watch a movie, or maybe we will eat dinner out and do something fun with the boys. Since I received a lot of positive feedback on the original Conscious Un-Halloweening, I wanted to give a shout out to my fellow special needs parents. We are all heading into the busiest time of year with parties, extended family visits, dinner spreads full of foods our kids won’t eat, blinking lights, and extra layers of clothing… But it is a wonderful time of year, and I hope all find ways to make the holiday blitz special.

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And this is what happens when I roam Target unsupervised.

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How early did your son or daughter start talking about Halloween costumes this year? How many times did she change characters or ideas?

Some autistic kids are fine with this holiday, but my kids…

Well, they HATE Halloween.

My kiddos will happily support the pumpkin patch, corn mazes, orange lights, falling leaves, free candy, and spooky decorations, but they despise October 31st. Wear costumes? No, thanks. Trick-or-treating is out of the question. These are aversions that I had to pause to wrap my head around—because what kid doesn’t love dressing like a superhero and collecting free candy? I had visions of my adorable children dressing up, turning our Radio Flyer into the Batmobile, and joining a neighborhood trick-or-treating posse. Every October, I start concocting costumes for the whole family. And every Halloween, without fail, my kids have meltdowns. If Gwyneth can coin the phrase, “conscious uncoupling,” then my family is hereby consciously uncoupling with Halloween…

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Igniting the Flame

If you follow this blog, you know I often write about life as an autism mom. This year, our youngest son was also diagnosed with autism after we noticed his regression of skills similar to our oldest child. By 12-15 months, Thing 3 was “talking” on the phone, playing imaginatively, pointing to objects, initiating games like peek-a-boo and patty-cake. All that stopped by 18 months and was replaced with toe walking, repetitive movements around the room, fixation with his hands and fingers, and silence…no sounds coming from our baby except epic meltdowns nightly at dinnertime. In July, we finally had our appointment with the Transdisciplinary Autism Assessment Clinic at Commonwealth Autism. In addition to administering the ADOS (Autism Diagnostic Observation Schedule–an assessment of communication, social interaction, and play), the team included occupational and speech therapists’ assessments. It was a long morning of questions and observations, but we knew what the findings would be.

So here we are, raising three boys with moderate autism.

Part of me was sad. Regressive autism is crushing–to see your child struggle with actions and words that used to be easy. On the other hand, life with autism is normal to us. Around the same time Thing 3’s language and social engagement vanished, there was a workshop on regression sponsored by the National Institute of Mental Health in Maryland that focused on the development of infant siblings of autistic children, but overall the National Institutes of Health grapple to understand the neurological changes, immune responses, and other physiological causes of regression. In an attempt to find answers, our family was evaluated by a genetics team at the University of Virginia. They completed a microarray analysis, which detects possible chromosomal abnormalities, and that revealed nothing out of the ordinary. The next test to be completed is called a DNA extraction using blood samples from Thing 1, me, and my husband. This testing did not exist when we took Thing 1 to a geneticist six years ago, so we are excited to see what it may reveal.

Autism research becomes a touchy subject when people argue for neurodiversity versus “curing” disorders. I accept my children for who they are and wish the world understood their struggles and respected their dignity…but I would be a liar if I didn’t say I would love to take away those struggles. In an attempt to contribute to the body of research, our family signed up for SPARK. SPARK is an online research partnership involving 50,000 individuals with autism and their families attempting to accelerate research, coordinate those findings among medical institutions, and advance the understanding of autism. Over 20 medical schools have joined SPARK, and SPARK provides those researchers with medical and genetic information from participants like us. When we signed up, we completed questionnaires about ourselves and our children, then sent SPARK our saliva samples.

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Special needs parenting cannot only be about IEP battles, inspirational quotes, and memes about coffee consumption. While those are all very true, I want to know WHY my children have autism. I know about ASD and ABA, IEP’s and IDEA, BIP, plenty of SIB’s, IFSP’s, ADHD, OT, SLP, and the whole alphabet soup. But why does this condition impact all three of my children? Perhaps new research will lead to custom interventions and therapies tailored to each child. Will new research explain the systemic medical problems related to autism, like immune deficiencies, seizures, and gastrointestinal issues, and therefore lead to better treatments? There simply is not enough research or funding to answer these questions, and SPARK looks to bridge that gap.

I was shocked to hear many of my friends in the autism community never heard of SPARK. I hope you share this information with other families affected by autism and be the spark that ignites a flame in the lives of others.