Saturday, March 31, 2012

Why everyone should be aware of autism.

And I'm not talking about just knowing about it. I'm talking about why everyone should be calling their representatives to DO something about it.

 See, autism is growing at an incredible rate. And, contrary to what some media outlets post, it's not just due to better diagnostics. These kids are truly disabled. I'm sure if any of the media folk tried to get an autism diagnosis for their child, they would better understand why their opinion is so far off track. See, it's a full-day observation by multiple specialists, doctors and experts (think psychologists, social workers, developmental pediatricians, speech therapists, occupational therapists, physical therapists, and just to get to that appointment, your doctor had to see something to refer you there). 'Parental input' is not the basis of this diagnosis, and a young child cannot fake something for 4-8 hours.

 Back to the subject. Why should you care? You may say, "I don't know anyone with autism. No one in my family has autism. No one I know has autism. Why would I want the government to waste money on that disability over others?"

 So, here's the deal. In my last post, I mentioned these statistics:-The current rate of autism is 1 in 88. Keep in mind those stats are from 2008. -The average rate of increase is 13% per year. PER YEAR.

 Using those numbers, I've done the math. If 2008 is 1 in 88, then:2012 (this year) is 1 in 54. I'll throw another statistic at you. One that I, as a parent, can barely stomach most days. Only 70% of autistic adults are able to function independently (I have read as high as 90%).

 So that means that, assuming that autism stopped rising today, in 10 years 70% of that 1 in 54 will be on permanent, full disability as an adult. That's 1 in every 77 people. On FULL, PERMANENT DISABILITY. Think for a moment of the financial implications of that on our country. Keep in mind, too, that other disabilities (physical, mental, cognitive) are at least staying steady - that 1 in 77 is autism ALONE.

 Now, in order to get that number to stop growing, surely the United States of America is investing in research into causes and treatments, right? They should be, right? Think again.

 Here's the latest stats:
National Institutes of Health Funds Allocation
Total 2011 NIH budget: $30.5 billion
Of this, only $169 million goes directly to autism research. This represents 0.6% of total NIH funding.


 So, on Monday, I challenge you to write to or call your Representatives. Write to the President. Include these stats if you want. Tell them we cannot afford to ignore autism anymore. We cannot afford to pretend it's just better diagnosis, that it's just parents wanting a label. That this is a real, life long disability affecting more than 1% of our population, and that we just can't sit around waiting for it all to implode. If we do nothing, nothing will change. And we just can't afford that.

Find your Representatives here. Senators here. Contact the President here.


Thursday, March 29, 2012

1 in 88.

That's the new statistic released today by the CDC. 1 in 88 children were diagnosed with autism in 2008. Up from 2006's 1 in 110. Up from 2004's 1 in 125. And 2000-2002's 1 in 150. I can only imagine what 2010's, or this year's numbers are.

World Autism Awareness Day is Monday, April 2, 2012.

In observance (I cannot say 'in celebration of'), here are some facts for you:

-Autism rates are up 78% in the last decade.

-Today the Centers for Disease Control and Prevention (CDC) updated its estimate of autism prevalence in the United States to 1 in 88 children (1 in 54 boys and 1 in 252 girls). By comparison, this is more children than are affected by diabetes, AIDS, cancer, cerebral palsy, cystic fibrosis, muscular dystrophy or Down syndrome – combined.* (Autism Speaks)

Autism Society stats:
-1 to 1.5 million Americans live with an autism spectrum disorder.

-Fastest-growing developmental disability; 1,148% growth rate.

-10 - 17 % annual growth.

-$60 billion annual cost.

-60% of costs are in adult services.

-Cost of lifelong care can be reduced by 2/3 with early diagnosis and intervention.

-In 10 years, the annual cost will be $200-400 billion.

-The cost of autism over the lifespan is 3.2 million dollars per person.

-Only 56% of students with autism finish high school.

-The average per-pupil expenditure for educating a child with autism was estimated by SEEP to be over $18,000 in the 1999-2000 school year. This estimate was nearly three times the expenditure for a typical regular education student who did not receive special education services.

-The unemployment rate for people with disabilities was at 14%, compared with 9% for people without a disability. Additionally, during the same period, only 21% of all adults with disabilities participated in the labor force as compared with 69% of the non-disabled population.

-There is NO CURE for autism.

This is staggering and terrifying. It is time for the government to step up and provide more funding for research to end this epidemic. Autism receives less than 5% of the research funding of many less prevalent childhood diseases.

Prevalence vs. Private Funding
Leukemia: Affects 1 in 1,200 / Funding: $277 million
Muscular Dystrophy: Affects 1 in 100,000 / Funding: $162 million
Pediatric AIDS: Affects 1 in 300 / Funding: $394 million
Juvenile Diabetes: Affects 1 in 500 / Funding: $156 million
Autism: Affects 1 in 110 / Funding: $79 million

National Institutes of Health Funds Allocation
Total 2011 NIH budget: $30.5 billion
Of this, only $169 million goes directly to autism research. This represents 0.6% of total NIH funding.

Wednesday, March 28, 2012

Starbucks ROCKS.

I went by my old store yesterday to grab a coffee and catch up with a few of my old coworkers.

My manager was so excited to tell me that Monday - World Autism Awareness Day - all the baristas are wearing blue in support of autism awareness. They are also donating a portion of their tips to autism charities.

Such an awesome thing to do, and such amazing people.

As an aside, everyone should wear blue Monday. Show your support! New stats are rumored to be 1 in 88...

Thursday, March 22, 2012

My new job :)

I was recently offered the position of Lead Preschool Teacher for a local summer camp!

I am so excited.

The camp sounds wonderful, I've met the kids - they're awesome, the other staff are fun and sweet...

In the meantime, they're also having me sub in the preschool classroom (many of the kiddos that go to summer camp are also in there). So. Cute.

My kids are also excited, because that means they are going to summer camp, too!

Fun times ahead!

Sunday, March 18, 2012

Cat issues.

My poor, sweet Beezy.

Friday, we noticed her rummaging around in our clothes. I saw her squat and chased her off, which lead to the longest day of my life chasing her from one place to the next trying to stop her from peeing on anything (for what it's worth, I was mostly successful. She beat me to one blanket that was immediately washed, so I'd call it a win.).

Suddenly she stopped Friday evening. Her nose got hot and dry. She was sleeping... a lot. It continued on to Saturday, and I realized last night she hadn't peed all day. She also had refused any water from that morning on.

So at 4am, I found myself at the Pet ER - Carolina Vet. I seriously cannot say enough nice things about these people - the vet tech was so sweet and good with Beezy, and the vet was incredibly kind and even worked with my budget ($300, HOLY CRAP SICK CATS ARE EXPENSIVE!).

We spent almost 3 hours there.

We left with the diagnosis of inflamed bladder, and probable bladder infection (the urine sample was incredibly small - I got it for them after a vet tech friend recommended doing it just in case) and was filled with red blood cells and white blood cells, as well as crystals. She got a prescription antibiotic shot, several vials of pain meds and a script for Dasuquin - an anti-inflammatory she will likely be on long term, if not forever. New diet of 99% soft food with an ASH content of less than 2.7% (thankfully a friend had recommended this before we went to the vet, so we made the switch) and only IAMS hard food.

Poor kitty.

She's peeing again on her plastic bag in a brand new litterbox (where she was going Saturday, bought especially for her) - I've never been so thankful to see cat pee in my life :) She's back to being ornery and crazy, which is a HUGE relief.

Happy to have a healthy cat again. I was so scared we were going to lose a furbaby - she is 11.5 years old now. The funny part of it was the vet said she would have guessed her age at half that - she's so spunky and healthy (other than the bladder deal).

Saturday, March 17, 2012

Legos, Legos, Everywhere

JT has a huge new obsession.

Lego mini figures.

Which is awesome in some ways... it finally gives us some leverage in negotiations ("JT, if you let the doctor look in your throat, you can get one Lego guy." "JT, try a bite. Get a star. Remember, 5 stars is a Lego guy.").

Not awesome in other ways.

Like when he finds the app on my phone and locates a Lego figure from a different series (we're currently in Series 6 of unmarked Lego mini figures, in case you were wondering) and decides he wants it NOW. So he can get it from the stars he's earned, but it takes time to order these things online and the mail to process and then to come...

Here's his soon-to-be friend that he is obsessed over. Meet 'Pop Star' Lego Mini figure.

And instead he's ready to go through the mailman's truck because he's convinced it's in there. And the mailman should bring it within 5 minutes of the order being placed. (It would be nice, though, right? If stuff showed up 5 minutes after you confirmed payment?!)

And now he found Ninjago.

It has come full-circle. It's all he wants to watch on tv. He scripts it constantly. While carrying Lego mini figures double-plastic-boxed (for security of Lego guys, of course). He looks for new mini figures on my phone. Legos are everywhere...

Thursday, March 15, 2012

Neverending strep.

This morning Audrey and I made a trip to Walgreens to pick up her z-pack and prednisone.

This is her 3rd antibiotic in 12 days; we're hoping this is the one that will knock out her strep. The other two haven't.

Her tonsils are huge, we're getting a referral to an ENT.

Poor baby just can't seem to shake this... fingers crossed this antibiotic does the trick.

Sunday, March 11, 2012

Four years.

In remembrance of D-day (diagnosis day) four years ago, today I put together a letter I'd send myself that day.

Dear four-years-ago-me,

There are so many things I want you to know about today, about your life, about your son. I know right now you're confused, you're hurt, and you have no idea what you're doing. I know you're afraid of what will be, how your family will handle it, how YOU will handle it, and most of all, how your son will deal with having a disability.

1. Things will get better. I promise.
Right now, you're dealing with hours-long meltdowns and head-banging. You're doing your best to protect your daughter (and yourself) from JT's seemingly random attacks. You're terrified of what will happen when he's bigger, stronger, faster than you. Please know that this, too, shall pass. When he's bigger, stronger and faster you won't have to worry about this stuff.

2. Don't believe everything they just told you.
You know how they just told you that your son would never talk? How he is likely severely cognitively impaired, and you would need an IQ test to verify around 7-8 years of age? They are WRONG. Your son will talk. He will learn the Kindergarten curriculum before he even starts Kindergarten. He will astound you and everyone who works with him.

3. You'll figure this out.
There are reasons for his outbursts. You will find ways around them, ways to minimize them, and then ways to teach him better alternatives to losing it. He will still lose his temper, but in a less aggressive way. Have faith and keep looking for those reasons.

4. Take the help.
You are stubborn, but when someone offers to help you, take it. The end.

5. You will find family.
Not just friends, but a true family. You won't know each other conventionally - face to face isn't possible when you're scattered across the globe. But there will be more love and caring in these friendships than you can imagine. Lean on them when you need it, and give back. You will need them throughout this journey.

6. Laugh. A lot.
You have to have a sense of humor when you parent a child with autism. At first, you're so wrapped up in the sadness to laugh, and that's understandable. But shake it off and see some humor in your everyday life.

7. Take care of yourself.
You need to make sure you are both mentally and physically healthy. It's not easy (for what it's worth, it's four years later and it's still a major struggle). You need to be here for a long time - to see your kids grow up and to grow old with your husband.

8. Don't believe the statistics.
Or at least don't let them scare you. They say 80% or more of autism families end in divorce. Yours won't be one of them. You have an awesome husband, and this will actually bring you much closer. You're lucky.

9. Audrey will be fine.
She is happy. She is healthy. And she loves her brother more than anything in the world. It is her blind hope and faith in her brother and his capabilities that will end up showing you how much he can really do. So let her take the lead. Let her drive him crazy sometimes. Trust me, it helps.

10. Let go of the guilt.
Again, a tough one that is still a work in progress. Whatever the cause, there's no way you could have known, and no way for you to have prevented it. You can only help your son as much as you can. You can't move forward when you're always looking behind you.

Four-years-ago-me, you will have good days and bad days. You will find an inner strength you had no idea you had. You will learn (quickly!) to stop caring so much about what others think, and start caring about what YOU think. You will find out you are, indeed, capable of handling controversy - and you will find you are excellent at getting what you want (surprising, right?!). You will be blessed with some amazing professionals (who you will consider friends later) who will change yours and JT's lives forever. You will find that there are far more 'good' than 'bad' people, more that care than don't.

So take a deep breath, and get to work. You have so much to look forward to.


Saturday, March 3, 2012

The food struggle, part 6,789

I am so tired of the eating issues that come with autism. SO. TIRED.

JT now only eats chips, crackers, and other 'crunchy' carbohydrates.

Luckily, he drinks Ovaltine, so at least we're getting vitamins in somehow.

JT's food struggles involve cutting out (and when we're lucky, re-introducing) foods that he has eaten (and enjoyed).

This list is not long to begin with. His only meats he'll eat are hot dogs and chicken (on his best days... although recently I came across a toddler pic of him eating ribs, that made me sad). He will not eat anything cold anymore, not even ice cream (he only eats that in cones, even on his best food days). He eats ZERO fruits and vegetables, aside from the french fry that occasionally he'll relent to (again, on a good day).

We had a patch where he only ate popcorn for over a month when he was in preschool.

It's just so hard to try and feed a child who wants nothing. And of course, I worry that he's not eating enough or getting what he needs. His doctor says he's healthy, and he's happy, and that should make me happy and relieve some of my anxiety (and it does a little).

But now we're heading back to supplementing with the infant vitamins again (because he won't take gummies or chewies, I have to sneak it in his chocolate milk), and it makes me sad.