Thursday, August 7, 2014

Things That Make Him Happy: Ravens Football

Football. He loves football and the Baltimore Ravens in particular. His interest in football has been something wonderful for him and for our family. Football an "acceptable obsession" he can go to restaurants with the game on the big screen and can cheer along with a crowd, he gets high fives from strangers and he can cheer his favorite team to victory with everyone else. It can be magical.

Over the last 5 years there have been many many teachable moments about yelling at home and in public, keeping calm during tough wins and far more conversations about certain commercials played during breaks than I would like (beer and boner pills are fun to explain). We look forward to the season and proudly wear our purple and black and every year I put together Cameron's NFL game book.

In the game book, every match up is listed and we spend a good amount of time during the week making our "picks". If you visit us during the season you better be prepared to make yours as well and don't worry, Cam will write it all down so your win or loss is forever notated.

Last year we stepped it up and started a small fantasy football league with friends and family. His ability to pick winners is awesome and The Hubs had to work pretty hard to squeak out a win in the league.  This year is my year though, I can just feel it! With a team name like Fighting Fluffypants how could I lose??

All of this is on my mind today because it's the first preseason game for the Ravens, Cameron's binder is ready to go and we are going to the game!!! So short blog today because we've got to get to M&T Bank Stadium to cheer on our team. 

**This is hopefully going to be a re-occuring topic, I would like to share "things that make him happy" and "things that make my life easier" in short but fun blog posts. Who knows, maybe we'll stumble across something that makes your life easier or something that makes you happy as well!!**

Sunday, August 3, 2014

My Highway

A few years ago I was trying to explain to my psychologist during my weekly "sanity checks" exactly what it felt like to have two kids with Autism. How do I perceive the past, present and future? I couldn't exactly explain it so instead I told her about the picture I had in my head.

I'm on a highway and it's a relatively sunny day, it's not blindingly bright but its also not rainy either. I can see for miles both in my rear view mirror and ahead of me clearly without squinting. The road is relatively straight, not a lot of curves but a few hills are both ahead and behind me. The car I'm driving feels comfortable, cozy, right... I've chosen this model well. Theres not a lot of traffic on the road with me. But there is something that is missing, something that I didn't notice for miles and miles and miles and now that I do see it, I can't see past it. There are no ramps on this highway. No on ramps, no off ramps. It can make me feel alone even with other cars on the road. It can make me panic knowing that if I run out of gas, there's no place to stop for more. It can make me feel isolated, there is only a cell phone in the car with me. Without technology I would have no way of communication. I can speed up, but where am I going even if I go faster? I can slow down, but what am I delaying? I can stop but that feels like giving up and it is a far worse feeling than just continuing on, even when I don't know what is at the end.  

So some days I'm driving along, my path is set and I've hit cruise control. Even going over a few hills, I'm still making good time. I'm comfortable, content.

Then there are other days, the hills are overwhelming, there aren't any off ramps and I'm very near running out of gas. I don't even know how I got into this road in the first place!

And it feels so unfair.

There are days when I know that I am here to be my boy's mom, that their future lies in my hands. That every win for them is a win for me. Sure I have some hobbies and distractions but ultimately the upcoming IEP is going to be more important than the latest popular fiction novel just released by my favorite author. The state waiver renewal, paying the therapy bills, budgeting for next month and researching trusts and power of attorney is more important than scrapbooking our vacation. Researching supplements, newest clinical research and books written about Autism is more important than getting the ingredients for a new recipe that I would like to try. It has to be, I have to keep moving. Not that I never do those things, they just aren't my priority. They can't be. I can't stop on the highway, there is no progress made in park.

The boys' diagnosis gave me the path, it took my scrambled interests, my desire to learn and all the many many subjects I have majored in college and studied in my free time and gave them a direction. It gave me a voice, it gave me this blog and it gave me you, a reader. You've heard me say that sometimes things are a happy-sad. This is a good-bad.

Am I ever going to write the novel I have planned in my head for a decade? Probably not. Will I ever open that pie shop whose business plan was my final project for my business degrees? Only if it is what my boys wish to do. Will I ever go back to college for my Masters degree? Not likely.

I've always thought that it didn't make sense to complain about something that you weren't willing to change it which is why I couldn't find these words to explain my highway. In my head it sounds like complaining but there is absolutely nothing about this journey that I would change. I love and adore my boys, every day they fill me with pride and strength. They are the fuel that keeps me going even without any gas station exit ramps.

I don't know what is going to happen to my highway, maybe there are some side streets ahead, maybe there are some scenic overlooks worth a stop. I just don't know. Right now it's open road and that is very much a good-bad, happy-sad.

Wednesday, July 9, 2014

The List Can Go On and On... But Here's a Start

I love every single blog post I see about 6 Secrets Special Needs Moms Know But Won't Tell You and 10 Things Autism Parents Wish You Knew. I read them and nod and think "yes, yep... true..." Then of course there are the tongue in cheek posts referring to the need for a whole bottle wine glass, a tee with a message or (and!) a nap.

Some days all I want is a nap (after drinking my wine while wearing my tee!), is that really so much to ask?

But most days I live in reality and realize that nap is never coming so I try and focus my efforts on things that would really, truly make my life easier.

  1. A table and chairs with lamp light in doctors office waiting rooms. We arrive the requested 15 minutes early for our appointment, sign in, hand over our insurance card, drivers license and credit card (swoon a bit over the hit the credit card is about to take) and then we are gifted with a stack of at least 3 inches but never more than 5 inches thick of paperwork to fill out. Questionares, data collects, permission slips, HIPPA notifications and those bubble forms we thought we left in high school comprise this stack. Then we are handed a clipboard. A clipboard!!! We proceed to sit in the waiting room for at least another 30 minutes trying to scribble as fast as we can on a toppling stack of paper while trying to recall when our now 13 year old learned to sit unaided and answering rapid fire questions and scripts from our child (Mom, where is my DS? Mom, did you know that the rat didn't cause the bubonic plague? It was the flea! Mom, I need an outlet, I only have 68% charge! Mom, how long is this appointment? Boom Shaka-Laka! Brrrring the Sting! Creepers gonna creep!). Can I just get a chair and a horizontal surface to set down my 5" stack of forms, my binder tote, my already exhausted arms and my embarrassingly large insulated cup of coffee (or Diet Coke, whatever)? 
  2. Free wifi in the same doctors offices and waiting rooms without having to call tech support for a temporary password. Bescause, honestly, if I have to go back up to that desk one more time to request such a thing then it's just not happening and meanwhile, I could have some of this information you've requested if I could just email The Hubs or do a quick google search for our last doctor who's number did not make it through the last synch on my phone. Speaking of which...
  3. Can I get a phone that does not require monthly updates which will invariably wipe out half my contacts and/or change the appearance of my calendar app? Don't change the calendar app ever!!! Just don't do it, do you hear me? It creates a vortex of chaos that just cannot be conveyed without many explicatives and generous hand gestures. And can you make that phone water and crash proof, please? Thankyouverymuch.
  4. Please reform the student loan program and don't forget about those of us who graduated a decade ago. I'm hearing some promising ideas coming out of Washington for student loan reform. (What?? I know!) Nothing I've heard will help those of us who have been diligently paying now for 15 years and still have so far to go... I fully intended on going back to work after kids, I was going to use both my degrees to make a difference, pay off those loans and start a 401(k) but life happened. The chances of me ever going back to work are very slim, I am prepared to take care of my boys every day for the rest of my life. I'm giving up my chance to work in hopes that the therapies and education they are receiving now will allow them to someday find a fulfilling job and to make their own contribution to society.  But seriously, that extra $300 a month can be a killer when insurance fights back...
  5. Will someone please close the loophole that allows self insured companies to bypass state (and some federal) mandates for treatment of special needs children? Its such an asshole thing for big companies to do and it's really screwing with families who need those rehabilitative services. 
  6. Governors and Congressmen need to understand that the Autism population is a LARGE one and it is getting larger. The numbers of Autistic adults who are homeless, in prison, on welfare and in state run facilities is staggering. The need for services is not when they are transitioning into adulthood at 21, the need for services is at time of diagnosis and during school. If you support them now through education and therapeutic services these kids will grow up and have jobs, open businesses and pay taxes. You already know the alternative, you are seeing it now in the prisons, the soup kitchens and hanging out at the library because its the only warm and safe place to go. 
  7. Figure out a way to meet the needs of high functioning special needs children who cannot function in the current idea of a "typical" classroom. I think the reason inclusion isn't working for some high functioning kids is because the classes are too big and the teachers are too few. No one (I'm looking at the elected officials here) wants to put money into education and teachers are absolutely NOT paid what they are worth. If we wait around for those teachers who find a "calling to teach" then we will have fewer teachers every year. A"calling" doesn't pay the bills and I know there are excellent teachers out there who can't afford to be a teacher when another job will pay better even if it's not their "calling".  
I tried to keep it light hearted. I love my "Autism Warrior" tee shirt and my insulated cups, I really do. I still love those articles that share with the world a glimpse into the isolation and struggle that Autism families face. The secrets they share are absolutely true and so are these. Even something as silly as a table to fill out paperwork can make a day easier and some days easier is the best we can hope for because you know a nap just isn't going to happen. 

Wednesday, June 18, 2014

My Sons Have Bruises All Over Their Legs and I Couldn't Be Happier!

Yep. That sounds odd but it's true!!! If you are a long time reader you are aware that we are dealing with Autism + Anxiety + Aggression + ADHD (wow, thats a lot of As, a perfect report card!). All those As for us mean:

Autism- Very limited interests, loves screens, hates being outside, amazing immune systems and an incredible sense of balance.

Aggression- We shy away from taking our oldest places where he may be anxious and become aggressive, in this way we shelter him which is not fair to him and to us but time, patience and my own peace becomes a limiting factor (and a person goal for myself to get over it).

ADHD- Attention limits things we can do, trying to learn new things sometimes isn't engaging enough to sustain attention long enough to learn.

Anxiety- Fear of the unknown, not wanting to try something because we don't know what could happen. What will the outcome be? Will I like it? Can I cope if I do not?

Add all these things together and you get two boys who have an innate athleticism and the ability to do hard things again and again without injury, that is IF you can get them outside long enough to try!

Enter I Can Shine Bike camp! Being able to ride a bike is freedom, its confidence, it's integrated and it's FUN! My boys have never been able to manage the skill.  Something about steering, peddling, watching where they are going, balancing and braking was just too much. I wasn't much help to them either because I just couldn't explain it, just balance and ride. To me it seems so simple but I couldn't help them so I researched it (as usual).

What I found was very interesting... When learning to ride a bike your entire brain is engaged in the task. Imagine how difficult that would be if your neural pathways were having difficulties already. As you learn the task it becomes more second nature and it engages the brain less and less. Once learned and practiced you can pick up a bike any time and pretty much ride it forever, no matter how much time has passed.

I Can Shine is an adaptive learning program, small group instruction (6-7 riders at a time, each with 2 volunteer spotters/runners), using adapted equipment which gradually teaches balance and gives kids an instant sense of accomplishment. They are riding in the first 5 minutes of camp!!!

I have taken tons of pictures and videos and I want to do a follow-up picture post after our camp week so keep your eyes out for that but for now... My sons have bruises on their legs and I couldn't be happier!!! They are learning to ride a bike, they has wobbled, bobbled, been hit by the pedal, and the results are badges of honor that says they have gone outside his box, are trying something new and are SUCCEEDING in the most amazing way!!!

I am so proud of them and forever happy to be their biggest fan.

Tuesday, April 8, 2014

Feel Free to Continue the Regularly Scheduled Debate... Without Me

I really really didn't want to write about this. I told myself, “Lunatic, don't do it. Just don't. DO NOT”. Good to know I don't listen to myself any better than I listen to anyone else.

I saw the fundraising effort at Chili's for NAA, I thought okay, kinda nice someone is supporting a group other than Autism Speaks for a change... didn't matter, we don't have a Chili's so I couldn't have gone anyway. Whatever, no big deal.

Except it became a big freaking deal.

The first thing I saw was an article written by Forbes citing that NAA supports the idea that vaccines could possibly play a role in a child having Autism. Commenters to the article said, “Don't support this event! Write to Chili's and tell them it's not okay!”

I responded to that posting with, “I don't even think of vaccines with I think of NAA, the first thing that comes to my mind is their Big Red Box campaign. If we continue to fight about the vaccine issue, companies like Chili's will just pull their support.”

And that is exactly what they did.

So is that a WIN?

Everyone who wrote to Chili's to stop their fundraising efforts and to tell them how wrong they are, do you now feel vindicated?

Congratulations, pat yourself on the back. You are a bully.

You don't speak for the entire Autism community and there is a point beyond educating that ceases to further your cause and you've found it.

Does it help our community that an on-going argument has and will continue to limit fundraising opportunities?

Anyone who read any portion of the comments to the Forbes article or blog post or Facebook post should have been appalled by our community. Parent calling parents idiots, study being cited against study. Vaccines cause autism! Vaccines never have and never will cause Autism! Its the same argument EVERY. SINGLE. TIME. And it has gotten us nowhere.

It's no secret that I HATE this debate. I've said it before. I fail to see how constantly debating this issue serves to help the Autism community because in the overall scheme of things vaccines are a small fraction of a small part of one piece of Autism yet the majority of discussions revolve around vaccines. It's the question I am asked the most, “do you think vaccines caused your boys Autism?”

NO, I do not think vaccines caused my boys Autism. When we got our diagnosis, the vaccine theory was in its heyday and of course I researched it. I educated myself, I ignored the conspiracy theorists, I made my own conclusion, came up with a strategy that I was comfortable with and then I MOVED ON! Ultimately, the cause of my kids Autism doesn't help me much right now. They have it, I can't un-do anything I may or may not have done in the past so I built a bridge and got over it. Now I spend my time focusing on the things that matter right now: their education, their health (which includes boosters when needed as determined by titer checks, not because of Autism but because it's the smart thing to do), their mental state and their future.

Thanks to my friend at No, Strike That for helping me figure out how to make this.
(Sorry I didn't use the pic of Christopher Titus you gave me,
that was just a lot of face for this little page.)

With as vehemently as people fight for and against the vaccine theory, I have to wonder if convincing someone of their point makes their child less Autistic? Is that the goal or is your opinion only validated when you convince someone else to believe you? 

Here's a novel idea, if you don't support NAA then don't go to Chili's on the night they have a fundraiser for NAA. How about that? It doesn't take anything away from your fight. You keep your fight and support the organizations with which you agree, the people who support NAA can support their cause. It didn't have to become this big deal, there didn't need to be arguments and name calling all over the comments sections, we didn't have to show the world how divided we are. I always thought of the Autism community as one of support with the common goal of acceptance but I was shown exactly how wrong I am in that thinking.

There will always be parents out there that believe that vaccines caused their child's Autism. I am not going to be the person who tells them that they are wrong in their belief. I don't know their story or circumstances and there is absolutely nothing I can say that will convince them otherwise. I'm not even going to try.

My belief that vaccines did not cause my child's Autism should not in any way alter your belief either. I'm not going to bother trying to convince you because it doesn't matter if you believe me or not. My fight in no way alters your life trajectory. Maintain course and I will do the same.

What I would like to try and convince you is that continuing these kinds of arguments will only serve to reduce the level of public and corporate support. We are supposed to be spreading AWARENESS and ACCEPTANCE this month, instead of conveying the idea of “stand with us!” we've shown everyone that we cannot even stand together.

As for Chili's, I can honestly say that I can't blame them for canceling the fundraising event. They probably had no idea just how divided we are, but don't worry! We showed them! They are in a 'damned if I do' 'damned if I don't' situation and they opted out.  I wish they had not, but they did and I respect their decision.

Wednesday, April 2, 2014

World Autism Day 2014

I have to be completely honest with you, today wasn't a day in which I felt like celebrating. One of my first thoughts this morning was of the date, April 2, and knowing that is was World Autism Day but with the announcement last week of the current Autism rate... I just didn't feel like participating. What is the point? I've been spreading awareness now for 11 years, I've been trying to educate and advocate and in the end I just feel tired and voiceless. I mean, is anyone out there? Are they listening? Do they care?

My day went in waves of highs and lows, seeing a few friends who had both good and bad news about their own ASD family and watching my Facebook feed light up with all kinds of Autism posts also both good and bad. The Light it Up in Blue debate started bright and early with posts about why certain non-profits are evil and the vaccine debate got kicked up by a measles outbreak somewhere. As an Autism parent of 11 years I found myself being careful of what I say and tip-toeing around the "hot topics" to make sure I do not offend fellow ASD parents. I have to say, I did not appreciate this at all. So rather than sitting on the side lines and attempting not to offend anyone, I'm just going to throw myself out there, say what I want and let the chips fall where they may.

I don't love Autism Speaks either but you have to admire a business model that has the world lighting things up in blue and who has such household recognition that when people "want to do something about Autism" they write their checks to Autism Speaks first.  Do I like it? NO. Is that the current state of Autism charities right now? YES. I'm not going to hide the hat I got in the first walk after Autism Speaks took over for Walk FAR for NAAR. I walked in that heat and I didn't understand my kid that well and it all kinda sucked and I earned that damned hat so I'm going to wear it! But I'm not going to send them my money and I'm not going to put a blue bulb in my front porch light and here's why:

  • I don't have any money to donate. The idea of sending donation requests to the people who would be applying for grants and access funds from the same charity is absurd. If I had an extra $50 to send you then I wouldn't have spent an extra hour on the phone yesterday with my insurance company fighting over the $50 that they failed to apply to my out-of-network deductible. Stop sending me donation requests.
  • I don't have time to change the bulb in my light. Seriously, that would involve the ladder we have hidden from 2 curious boys and climbing and removing some complicated glass covered thing to switch out the bulb then replace the glass thing and hide the ladder again. Then I have to do it all over again the next night or risk looking the the schmuck who forgot to change the bulb back for months and months not realizing it was blue until Christmas. Um. Yeah. So that happened. Moving on... 
Here's my take on Autism Speaks. It's like fighting the pharmaceutical company or the insurance company, you probably aren't going to win but feel free to fight the fight. I mean, it can't hurt. For me, personally, I'm just going to use them. I know I'm not going to donate any money to them but I will follow them on social media, read their webpage and take the only thing they are offering me... information. I'll share it too and I won't feel bad about it. I'm going to ignore all the slanted crap and all the stuff that implies my kids are defective and I'm going to read the current research that is available. If nothing else, it's an okay clearing house for a lot of the other stuff floating around the internet. (*If you never listen to another thing I say, hear this: Do NOT just Google Autism! Just take my advice and don't do it.*)

In similar regard, I also sift through all the other side of Autism research with cures and snake oil and I take the information that is pertinent and necessary to our own journey. Keeping in mind always, Do No Harm and the old adage that "if it sounds too good to be true, it probably is." Let us not forget that our children are unique, under the same spectrum, but unique. You cannot follow someone else's path and expect the exact same results. Results may vary. 

Vaccines... sigh... I really wish everyone would just shut up about them. Until every single person in the country does a blood draw for titer levels that correspond with the vaccines they do or do not receive, I really don't want to hear about it.  Bottom line, ask any doctor or scientist... no vaccine is 100% effective. The **ONLY** way to know if you are immune to a virus is to check your titer level to make sure you have enough antibodies to be immune. Kids who are fully vaccinated are catching the measles, kids who are not fully vaccinated are catching the measles. The answer is not more shots, it's actually checking to make sure the shots are effective (*insert conspiracy theory here because I'm not going to*). 

Those are the biggies on my news feed today... here's some final thoughts.

It's super cool to see major landmarks bathed in blue light and know that it is for my kids. 

I question whether or not Awareness is still necessary and then someone in the grocery store tries to explain to me that kids should be "beat until they behave" and I realize there is still so far to go. 

Obama Issues World Autism Awareness Day Proclamation I think this is kinda cool, thanks President Obama. I considered it a "win" when you even said the word Autism during the presidential debates and I appreciate this follow-up. 

National Autism Association  is doing some great stuff to promote safety and wandering prevention, so much so that even Autism Speaks have started jumping on the bandwagon. NAA's Big Red Safety Box and Project Lifesaver are saving lives every single day. 

The Autistic Self Advocacy Network has the best slogan ever, Nothing About Us Without Us. I like their purpose and their goals and they are getting stuff done. If you haven't heard about them, you have now. When you reach the point of accepting and understanding the diagnosis, you then will turn to the future and this group is actively working for your future now. 

If you have someone who wants to donate to an organization or if you have extra funds and wish to donate, don't just follow the leader and consider other organizations like the ones above or local organizations. 

I have a difficult time with Autism Awareness Month, I appreciate all of the awareness, action and information that happens this month but guess what? May is also Autism Awareness Month for us, so is June, July, August... the blue lights will go away but Autism will stay and before you think that is a negative, it is not. When I look back at the last week, it was quite frustrating. When I look back on the last month, it was quite interesting. When I look back at the last year, there was progress. When I look back at the last 10 years, it has been extraordinary. I am in awe, not of Autism Speaks or blue buildings, not of vaccine debates and placing blame. I am in awe of two (no so) little boys who have changed the world just by existing and I get to be their Mom. 

Thursday, March 27, 2014

THE Numbers

You know what I'm talking about, it's what everyone in my world is talking about. Today the CDC released the new Autism rate numbers at 1:00pm. Everyone waited next to the computer to put it on their site and get the numbers out as fast as possible. I didn't, I was at lunch with a friend.

The new official rate of Autism is 1:68 (boys 1:42; girls 1:189). How about a pretty graphic?

You might have caught my tone here, not too much excitement. I'm not jumping up and down yelling, had the numbers gone up or down my reaction would be the same. The reason for that is because I'm frustrated. Tonight Autism will be all over the news media, articles will be printed, blogs will be written, news anchors will say "wow" and I will sit here and say AND.........

When my oldest son was born (2001) the rate was 1:250

The day he was diagnosed (2004) and the day my younger son was born it was 1:166

The day my younger son was diagnosed (2007) it was 1:150

When I started this blog (2011) it was 1:88

In the past I would anticipate the numbers, I would sit next to the computer and await the report. I would think that they meant something. Once we broke 100, once the rate got to 1:88 I thought to myself SOMEONE will notice! SOMEONE will do something!! Doctors, researchers, the CDC, the FDA, the EPA, Congress, someone would recognize that this is an issue. Wait? An issue? This is more than an issue. 

No doubt I am biased, I'm extremely biased. I can't separate Autism from my life any more than I can separate female from my gender.  I would love to say that life is so much easier since our first diagnosis but guess what? It's not

I still can't find specialists in my town (population 66,000).

Insurance still doesn't cover even half of the services my boys need. 

There is still no program in our school system that can adequately educate the high functioning special needs diploma seeking population.

The state waivers still have waiting lists thousands long. Not that it really matters though because once you have the waiver in my state you can't find any providers who accept the waiver as payment. 

We still get stared at in public and I still get unsolicited advice from people who think they know best. 

Families are struggling. Spouses are divorcing. Parents live in fear of the future. Kids are lost. 

To be perfectly honest, I don't care if the numbers are increasing because of better diagnostics or if its because there is too much of something in the air or our food or if it's because there were more cloudy days than sunny days 10 years ago... I don't care what the "experts" say that benefits their pet projects what I want is for them to freaking talk to one another and figure it out and get these numbers under control. 

I hope that someday, someone will soon realize that there is a population of kids and adults that have Autism NOW and tomorrow there will be more. This is a population large enough to make a difference and impact the future and what they need NOW is: 
  • education 
  • medical support 
  • psychological support 
  • therapeutic support
  • a future 
These kids are AMAZING. They are talented, they are smart, they are beautiful and they are a large part of the human population (and growing). To neglect their needs now is to ignore the future. If we as a country fail to educate them now, we as a country will have to support them later. Autism doesn't just go away at the age of 21, dedicated parents don't live forever and as much as I want and need to save for my boys future, I'm too busy paying for the therapies they need in the hope that one day they will be able to partially support themselves even if they can't live by themselves. 

So, as much as I want to think that these numbers will shock everyone and something will happen from it I know that tomorrow is a new news cycle day and something else will be the headline. 1:250 wasn't high enough... 1:166 wasn't high enough... 1:88 wasn't high enough... will 1:68 be?