Sometimes (okay…almost always) holidays and school breaks give me a nervous twitch. They throw off my kiddo’s routines, and we’re constantly looking for a cheap way to entertain and exhaust our big boys. When the weather is chilly and skies dreary, Thing 1 and Thing 2 tend to plug into their iPads or destroy the house. Usually it’s a mix of both. Thank goodness for sunshine and temperatures thawing on Monday. Nana and I packed up the kids and had a great day at Maymont!
We started at the Nature Center, then visited the wildlife exhibits. The boys are always fascinated with the bridges, tiny waterfalls, and animals. In the spring and summer, we like to play in the gardens.
The boys also tested the laws of gravity. What goes up…
…must come down.
Monkey see, monkey do.
Mission accomplished. That is one seriously tired middle child.
But not too tired for a pitstop at Carytown Cupcakes on our way home. We LOVE this place! I shared a couple bites of my carrot cupcake with the baby. Judging by that sweet face, I think he approves.
The day made me think of the Beatles song… I need to laugh, and when the sun is out I’ve got something I can laugh about. I feel good, in a special way. I’m in love and it’s a sunny day.
I spent my Friday morning at the Virginia General Assembly to lend my support for House Bill 1940. For those of you unfamiliar with Virginia’s legislature, our General Assembly is made up of 40 Senators and 100 Delegates who convene every January for either 30 or 60 days. On Wednesday, Delegate Tag Greason introduced HB1940 to end the age cap on autism insurance coverage in our state.
A little background… In 2011, our General Assembly passed a law requiring insurance companies cover autism therapies, specifically pharmacy care, psychiatric and psychological care, speech therapy, occupational therapy, physical therapy, and behavioral treatment. When it comes to behavioral treatment, applied behavior analysis (ABA) is specifically mentioned, with a cap of $35,000/year. Besides the monetary cap, the age is currently capped at 6.
We all know autism does not magically go away when a child turns 7.
Both Matthew and Wesley receive ABA. We have been blessed to work with wonderful providers and both boys continue to make gains with this treatment. Because of ABA, Matthew regained many skills he lost after a massive regression, working on academic, language, self-help, and social skills. Because of the insurance mandate, we could afford to enroll Matthew in The Founders Center of Commonwealth Autism until he turned 7, which is where Wesley goes now. Matthew currently receives home-based ABA before school two mornings every week.
When Matthew aged out of the insurance mandate, we were not left high and dry because he also receives funding via the state Medicaid system. We went through various screenings when Matthew was 3 years old and were found eligible for EDCD and ID waivers, which granted Matthew Medicaid benefits based on his personal income, not our family income. The waivers are complicated and bureaucratic; but in a nutshell, Matthew had to fit a criteria for nursing home care to receive EDCD benefits. The social worker who evaluated Matthew told me this particular waiver was intended to keep the elderly and mentally disabled with their families and out of institutions. This is the system we’ve been thrown into. I feel so horrible for friends who cannot access these services for their autistic children, but it’s symptomatic of a much larger broken system, which I tried to convey to the senators, delegates, and legislative aides I met today…My husband and I are both college graduates, employed full time, regular middle-class suburbanites. We should not rely on Medicaid for services.
Knowing that opposition to HB1940 seems to be the thought that it will cause health insurance premiums to skyrocket, I used my own family as an example. The state can continue to pay Matthew’s outrageous ABA bills, or let private insurance do the work for mere pennies to the consumer.
Last year, autism claims raised premiums $0.22/month in Virginia.
$0.22 and people want to cry uncle.
So here was my day…
On Wednesday, I contacted my senator and delegate. I expressed my support for HB1940 and told them I was going to be at the General Assembly on Friday and would love the opportunity to speak with them in person. I heard back from Senator Steve Martin’s office and had face-to-face time scheduled for 9:00. His office was bombed, his secretary looked overwhelmed, and I had this song playing on repeat in my head:
At 9:10, his secretary got the attention of the packed room, pointed to me, and said I was next. Out comes Martin, THRILLED to see a group doctors outside his door. All caps really doesn’t convey how happy he was to greet those guys. He tells them to come on in, to which little-old-lady secretary responds, “Senator, this woman is next.”
“Oh.” Seriously, he looked sad.
I did my best to give him my spiel about Matthew and Wesley and the $0.22/month thing and how much I hate Medicaid in our 120 seconds together. He suggested I make an appointment to meet him for coffee when the General Assembly is not in session. In my mind, I was thinking, “A-hole, I need your attention right now, not in March.” Instead, I thanked him for his time. Then he hollered for the doctors. Senator Martin is on the Autism Advisory Council, and I’m his constituent. I was not expecting our meeting to be so disingenuous. If I could insert the sound of a balloon losing air and flopping to the floor here, that would describe how I felt. Deflate. Sputter. Flop.
I met up with a group from Autism Speaks, including several legislative aides and the organization’s Director of State Government Affairs. They were all amazing, smart women. They learned that an identical bill was being introduced in the Senate today. I joined them in meetings with Senator Richard Stuart’s office and my delegate’s office, Manoli Loupassi. Their staff listened, asked questions, and genuinely seemed interested in learning about the bill and how current coverage impacts families. I was asked how our costs are affected, and what are the going rates for ABA, speech therapy, etc. They wrote those numbers down. How many hours of ABA did Matthew get under the insurance mandate? How many hours does he get now? What’s the difference between that school he went to and what he gets now? All good questions because it shows they were trying to understand the problem beyond a sheet of talking points. I got a follow-up e-mail from Delegate Loupassi this afternoon thanking me for sharing information with his aide, and he provided his cell phone number for any additional comments, concerns, or questions. Now that’s amazing.
Then I came home and took a picture of my outfit. I rarely look put together.
The people from Autism Speaks asked if I would be available to come back for committee meetings. Sure, why not.
In the meantime, you can help by contacting your own senator and delegate and tell them to support HB1940. You can use this form letter here:
My name is _____, and I live in your district. I want to call your attention to a bill that is very important to me, my family, and my community. Please support House Bill 1940. This bill recognizes that autism does not go away when a child turns seven, and medical treatment is often still necessary. The Virginia State Corporation Commission reports that the average annual claim cost per member for 2012 and 2013 were only $2.19 and $2.66, respectively. Actual claims experience from states that have at least three years of autism insurance coverage and higher or no age restrictions indicate an average premium impact of less than 50 cents per month, yet recent studies show that intensive services can result in a total lifetime savings range of $1-2 million dollars! I sincerely hope I can count on your support.
Feel free to share a personal story about how autism has impacted your life.
You can also share these details from Autism Speak and Virginia Autism Project:
Winter break came and went, and despite the flu and pestilence, I managed to stock the freezer. I made tried-and-true favorites, like pasta sauce with meatballs. I finally demolished the leftover Thanksgiving turkey carcass and made a giant batch of turkey and rice soup. We experimented with new sauces and flavors, and I’m sharing my pasta sauce recipe. It’s awesome. It starts with butter. You’re welcome.
First, I have to sing the praises of Wildtree’s Outrageous Orange Sauce. It makes orange chicken like Panda Express on steroids. I cubed three chicken breasts and let them hang for a few minutes in 2 eggs, some cracks of pepper, and a pinch of salt. Then I dredged the chicken in flour and browned in a skillet. From there the chicken went into a glass dish and bathed in the orange sauce.
The chicken baked in the oven for 25 minutes at 350 degrees. I gave everything a good stir and threw in some leftover broccolini about 15 minutes through and served it with rice. This stuff was spicy and great for clearing our stuffy noses. I would show you a picture of the finished product…but we were hungry, and this is all that was left.
Two thumbs up.
Okay, now the pasta sauce. Make sure you pour yourself a glass of red wine before you start.
For the sauce:
One stick of butter
2 onions (one chopped, one just cut in half)
3 cloves of garlic, minced
2 28-oz. cans of crushed or whole tomatoes
1/4 tsp. dried oregano
1/2 tsp. crushed red pepper
1/4 cup fresh basil, chopped
Salt and pepper to taste
Tool: Immersion blender
When it comes to herbs, I usually use what I have on hand; any mixture of oregano, parsley, basil, dried mirepoix, or Italian seasonings tastes good. The meatballs finish cooking in the sauce, so that adds more flavor. You can use less or no crushed red pepper if spicy is not your thing.
Melt the butter in a large pot or dutch oven. Add the chopped onion and saute until tender, about 8 minutes. Add the garlic and saute another minute. Then add tomatoes and dried herbs to the party. If I use whole tomatoes, I crush them with my hands first. Bring everything to a simmer and add the fresh basil and half of a whole onion. Seriously, just put the onion on top and leave it there. You can save the other half for another dish. Let the sauce simmer for 30 minutes.
Now drink your wine. Feel free to pour yourself another glass, too.
While the sauce simmers, form the meatballs. You need:
1 pound ground beef
1 pound ground pork (or lamb, or sausage, or whatever)
1/4 cup bread crumbs (I prefer Panko, but use what I have on hand)
1/3 cup finely grated Parmesan cheese
2 cloves garlic, minced
Salt and pepper
1/4 tsp. dried parsley
Combine all ingredients and form meatballs to your desired size. I keep them small to medium and get 30-32 using two pounds of meat.
Now wash your hands and finish that wine.
Return to your sauce and remove the half onion that’s done working it’s magic. I use an immersion blender at this point to make the sauce smoother, but not totally pureed. Give it a taste and adjust the salt and pepper as needed. Once that’s done, return your attention to the meatballs.
Heat some olive oil in a large skillet and brown the meatballs in batches (2-3 minutes per side), then transfer the browned meatballs to the pot of sauce to finish cooking. Simmer for an additional 25-30 minutes.
This makes at least two dinners for my family, and is my boys’ favorite thing to eat besides Nutella sandwiches.
The year started with the unexpected death of my mother-in-law. It’s hard to believe she’s been gone almost a year. Even though we did not have a warm and fuzzy relationship, she loved her grandsons, and I’m sad she did not have the opportunity to meet our youngest.
We also said goodbye to our 13-year-old greyhound, which started a dark time for our oldest. I don’t really know if it was Bo’s absence, since Thing 1 cannot verbalize how he feels or hurts yet, but he used Bo for a lot of sensory needs. He liked to lay on the dog, listen to Bo breathing. When he stopped getting that input, it started a summer of nonstop emotional meltdown and self-injury, screaming, crying, and breaking toys and furniture. The cherry on top: he was about to age out of Virginia’s insurance law that requires health insurance companies cover autism behavior therapy, specifically ABA. We were facing this massive hurdle, and at the stroke of midnight on M’s 7th birthday, his services turned into a pumpkin and mice. As parents, it was heartbreaking to be unable to understand what was wrong or how to fix it until finally, something clicked, and Matthew came out of the fog.
In that same stretch of summer, our second child was diagnosed with Autism. Going through the evaluation process again, hearing the same outcome…talk about a sucker punch. At least we could form an action plan quickly, with a been-there-done-that bravado.
But this is how I really feel…
Fuck Autism. And fuck this year of Autism.
No one asks to be in this club, but we will move mountains to get my kids the services they need and deserve. This is life, and you have to play the hand you’re dealt. Although sometimes I’d like to punch that dealer in the face.
The best thing about 2014 is Thing 3. We had a baby in April, and he is amazing! I love everything about him. I love how much he adores his brothers. I love how quickly he learns new things. I love his babbles. He brings so much joy and enthusiasm to our home.
Despite the oldest’s tough summer, he now skips and hops through life, gives hugs, and uses more language. Our wild middle child is thriving at school. The baby is happy and healthy. And my husband and I swear and snark way too much…but we swear and snark together. I’m thankful for the friendships we made this year with other parents of special needs children, where we can talk about melatonin, our children streaking, and poop without raising eyebrows. We call them “our people.”
My hopes for 2015…
I hope Thing 1 and Thing 2 continue to grow their language skills. I love hearing their voices use words, sing songs, and recite their favorite television episodes.
I am thankful my husband has a job that pays the bills, but I hope he finds work that satisfies him intellectually and emotionally. He’s a smart, hard worker who should be appreciated more.
I can’t wait to see the baby boy take his first steps.
I hope my local School Board members pull their heads out of their asses for a few minutes. Just let me teach!
I hope anyone reading this blog writes their Virginia General Assembly representatives (find yours here), telling them to raise the age cap on Virginia Code Section 38.2-3418.17 so children beyond the age of six have easier access to ABA.
Whether moving up, down, sideways, or upside down, I hope you have someone sitting beside you on the roller coaster.