Tag Archives: parenting

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Judging Fish

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This post was originally written for Autism Speaks, which you can see on their website here.

The autism world is filled with acronyms, metaphors, and symbols. ABA, IFSP, IEP, SIB, puzzle pieces, umbrellas, and this insight from Mr. Einstein to name a few: “Everybody is a genius.  But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.”

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Preach, Albert.  Want to know what I REALLY think our symbols should be?

Blood, sweat, and tears.

My kids are learning how to function in a world that’s not exactly made to fit their senses or sensibilities.  Achieving acceptance is about having access to services and opportunities they need to effect that learning.  That said, I’ve been reflecting on how doors opened for us and appreciating the hard work of strangers that went into it.

Thing 1 was diagnosed with autism in 2010.  A few months after diagnosis day, we were quietly asked to leave the preschool he attended.  I will never forget the director’s words.  “He’s not potty trained, so he can’t graduate to the next classroom.  I don’t think your son is getting anything out of our program anyway.”  Once we figured out the lay of the land, what we really wanted for our son–a specialized day program for children with autism and intensive behavioral support–was financially unattainable in the state of Virginia.  This was our reality: Thing 1 was not speaking, meltdowns were daily, and by the time he turned five, the only educational option offered was a self-contained kindergarten class.

That was a low point.  Autism was kicking butt and holding my son hostage.

What I did not realize was strangers were shedding blood, sweat, and tears FOR YEARS to make services accessible to all Virginians.  I imagine these guys marching into the General Assembly year after year like Wyatt Earp in Tombstone, never giving up… “You tell them I’m coming, and hell’s coming with me.”

Seriously, who does not love that movie?

To call Virginia’s autism insurance mandate a game changer (recently expanded to cover children through age 10) is an understatement for our family.  It was by no means a free ride, but at least we had a fighting chance.  Thanks to intensive ABA, Thing 1 grew by leaps and bounds and started using words.  BEAUTIFUL WORDS like mommy, daddy, milk, potty, applesauce, no…a whole lot of “no.”  That’s definitely his favorite word.  He writes letters, recognizes sight words, and he can recite any Thomas episode like a champ.

Thing 1 to school

Thing 2, now 4 1/2 years old, was diagnosed with autism last year and also benefits from ABA.  He has friends in an inclusion classroom, he’s an awesome swimmer, and he knows all the Llama Llama books by heart.  This is our reality now: We have healthy, happy boys.  When they have bad days, we have a toolbox of communication and coping strategies to break through the frustration.  It’s like instead of treading water, we have a life preserver.  None of that would be possible without strangers (now friends) fighting for us–pounding the General Assembly and advocating for kids like mine.

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I’m looking at April and Autism Awareness Month with more hope than ever because I am excited to see Governor McAuliffe sign autism insurance expansion into law, I am inspired by my boys’ budding personalities, and I am resolved to continue to fight for them.  Tonight we went to Home Depot and bought our blue lightbulbs–for these little lights of mine.

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SmartMom Review

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While scrolling through Facebook, SmartMom keeps showing up as a recommended page.  Maybe you’ve seen it, too.  It shows a picture of a toddler playing in a giant inflatable swimming pool in some family’s palatial living room with the tag line, “Our moms have great ideas.”

Okay, whatever.

I installed the SmartMom app (which is free) without reading the reviews.  Mistake.  The entire app is just a message wall with moms posting various questions.  And by various, I mean different moms post the same five questions over and over again.

  • When can I give my baby solids?  Wait, you mean I can’t give my 8-week old cereal?  Why?  She’s big for her age and obviously has an advanced stomach.
  • I had my baby two weeks ago.  Why haven’t I lost 30 pounds yet?
  • My baby is drooling and gnawing on things and fussy.  What is this phenomenon?
  • My child has a cough/runny nose.  We’re going to the emergency room.  What should I expect?  I think it’s bubonic plague.
  • My husband refuses to change diapers, do laundry, cook dinner, or hold our baby.  All he does is play video games.  Is this normal?

As you answer these questions on SmartMom, you accrue points.  These points help you win their monthly giveaways.  Honestly, I lasted about 10 days on this app before I deleted it.  A free B.O.B. stroller just wasn’t worth it.

I get it, though.  Even though I may not be a first-time mom anymore, we are still discovering new firsts in our children’s development and have questions.  However, this app is seriously ridiculous and showed me nothing…besides the world has absolutely no common sense, and apparently no one uses a regular pediatrician anymore.  Instead of the inflatable swimming pool, SmartMom creators should consider this little guy’s wise words:

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Measles is the New Ebola

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Once again, we have media-generated hysteria over a viral outbreak.  Someone cue Dustin Hoffman and Cuba Gooding, Jr.’s tears.

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There is no debating that vaccines save lives.  The Department of Health and Human Services tells us that we can protect our children from more diseases than ever before; vaccines are subjected to long, careful reviews by scientists, doctors, and healthcare professionals; immunizations protect the people you love most; those vaccines save families time and money because non-vaccinated children can be denied attendance at schools and daycare; and immunization protects future generations, evidenced by the eradication of smallpox.  All positive things.

Having two children on the spectrum, I heard, like everyone else, the vaccines-cause-autism claim.  Obviously, I did not buy into this link because my older boys got all immunizations in accordance with the CDC’s schedule, and the original study has been debunked over and over again.

When I was pregnant with Thing 3, I started wondering about what I could do differently.  I have no idea what causes autism–nor does anyone else on this planet apparently–but what could I possibly do differently during pregnancy and his infancy to abate the risk?  The answer may be absolutely nothing.  My husband and I started thinking about the timeline of Thing 1’s progression and regression.  He hit his milestones through 14-15 months until we had a series of small events: MMR shot at 15-months old, anesthesia and ear tubes at 16-months, and strep throat around 20-months.  Could it have been a combination of those environmental factors that caused a regression of all language and self-help skills?

But what does that matter if Thing 2 did not have those issues but also has autism?  Is autism inevitable?

Kind of a tangent, but I started researching PANDAS, which stands for Pediatric Acute-onset Neuropsychiatric Disorders Associated with Streptococcus. Kids with PANDAS or PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) show OCD behaviors, moodiness, anxiety, and other autism-like symptoms.  The theory is that an infection–whether strep, Lyme, flu, or another bug–led to antibodies that mistakenly attack the part of the brain that controls behavior, and doctors are only starting to study this phenomenon.  I could not find enough information blaming PANS for language regression, so investigating a PANS diagnosis for my kids is probably not appropriate…but it led me to a bigger question wondering if something weird was happening with the boys’ immune systems.

So that goes back to the vaccine issue.  I am not a hipster, not anti-authority.  While the benefits of vaccination outweigh the likelihood of an adverse reaction, it is my responsibility as a parent to know what is injected into my children and how it was made.  I learned that vaccines are not an all-or-nothing argument, and those who question the preservatives in the MMR shot or opt for a different vaccine schedule do not deserve such ridiculous vilification on social media.

I do want my children protected from diseases like polio and measles.  Through long, sometimes tedious hours of research and investigating the vaccines myself (does anyone bother to request and actually read the informational inserts that come with those shots?), I settled on a modified version of Dr. Sears’ staggered vaccine schedule for Thing 3.  His Vaccine Book is enlightening and not anti-vaccine.  He offers numerous articles on safe vaccination here.  I am now a Dr. Sears groupie.

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Here is the immunization schedule we settled on for Thing 3, with the blessing of our pediatrician.  I’m grateful she respected our wishes and was open to having a discussion with me about the pros and cons of each shot.

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If you are unsure or have questions about vaccines, I encourage you to do some research, talk to your pediatrician, check out The Vaccine Book, read the information included with those vaccines–just like you hopefully read the warnings and information that come with any medication.  And please use a little common sense instead of blindly following the TV’s talking heads.

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Miles to Go Before I Sleep

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This week I feel like we are trudging through thick snow, making little progress.  Never mind it’s sunny and a mild February.

The General Assembly session is winding down, and our much anticipated bills to expand autism insurance coverage in Virginia are still sitting in committee.  Media outlets across the state are now starting to pay attention to HB1940 and SB1457, and yesterday the story appeared in Hampton Roads here.  The Senate was supposed to hear the bill on Monday, but SB1457 was pulled off the docket and postponed.

Patience may be a virtue, but I am not feeling virtuous anymore.  Thing 1 cannot wait another year for this debate.

Last night I reached out to a few well-connected friends…because it’s not what you know; it’s who you know.  A couple awesome ladies put me in touch with two news reporters.  After e-mails, text messages, and a phone call this morning, I think NBC12 will be at the House Commerce & Labor meeting tomorrow, where HB1940 will hopefully be up for a vote.  And the reporter wants to interview us.  Aye aye aye.

In the meantime, I turned on The Story of Us (thank you, History Channel) for my students today and hit the e-mails hard.  Here’s my letter to every single member of the Senate Commerce & Labor Committee:

Dear Sirs and Madam:
I am writing members of the Commerce & Labor Committee, urging you to end the age cap on Virginia’s mandated insurance coverage of autism spectrum disorders.  I live in Midlothian, and I have three sons, ages 7, 4, and 9 months.  My oldest sons both have autism.  SB1457 will reach your committee meeting soon and impacts thousands of Virginia families.  Those families are sick and tired of begging the Commonwealth for scraps.  Today it is more difficult for families like mine to secure EDCD waiver services or a spot on the ID/DD wait list.  The Individual Family and Support Program funds are a joke, and this January only 600 requests were granted out of 3300 applications.  Because of our denial, my oldest son will not receive occupational therapy this year because we cannot afford to pay out of pocket for the service.
If my children were diagnosed with diabetes or multiple sclerosis and our private insurance refused to cover their medically-necessary treatment after age 6, people would be horrified and outraged.  Why is there not the same demand to protect children with autism?  Contrary to what the current law implies, autism does not go away when a child turns 7, or 10, or 21.
Applied Behavior Analysis is the most common evidence-based therapy for children with autism.  Both my boys receive ABA, and it is because of this therapy that my nonverbal oldest son learned how to feed himself, potty train, make eye contact and greet people, answer to his name, gain academic skills necessary to transition to public school… I could go on and on.  ABA saved us.  He turned 7 last summer and aged out of required insurance coverage.  We now rely on Medicaid to pay for M’s 6 hours of weekly ABA therapy.  My husband and I–both college graduates, employed full-time, with a household income over $100,000–rely on M’s Medicaid to pay for what private insurance should be required to cover.  The current system forces regular able-bodied middle-class families to rely on the Commonwealth for financial assistance, and it is within your power to change that.
ABA is expensive, but the actual impact on insurance premiums in minimal.  The State Corporation Commission reported that coverage of autism spectrum disorders led to a $2.66 per year per member increase in premiums in 2013.  In states that have no age cap, premiums raised on average less than $0.50 per month per member.  The cost of a couple Starbucks lattes will save families and the state between $1-2 MILLION over an autistic person’s lifetime.  The resources available to Virginia families to afford meaningful and medically-necessary therapy for children with autism is extremely limited, and the absence of insurance coverage forces many families to pay out of pocket, anywhere between $25,000-$50,000 for services.
Please vote YES for SB1457.  Thanks so much for your time.
I sent the same message to members of the House C&L Committee.  Find your delegate’s and senator’s names, and make a call or send an e-mail on behalf of my family and every Virginian with autism right now!
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Good Day Sunshine!

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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.

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The boys also tested the laws of gravity.  What goes up…

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…must come down.

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Monkey see, monkey do.

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Mission accomplished.  That is one seriously tired middle child.

2015/01/img_0986.jpgBut 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.

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2015/01/img_0990.jpgThe 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.

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My Day at the GA

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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.

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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:

Dear _____:

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:

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F*** You, 2014!

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Talk about a roller coaster of a year.

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.IMG_2908

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.

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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.

Happy New Year!!