Yelling at the Pieces

This week I was given a compliment from a fellow parent, he said that he admired my patience with my boys. I should have said, “thank you” but instead I think I mumbled something about my patience being long fought and hard won. This is true. In the past fellow parents have not been as kind as I was dealing with tantrums and rages and just trying to get though the moment. It has taken me YEARS to have the level of patience I do now but, in no way, shape or form do I have an extended patience level. In all of thirteen years I have amassed a level which can last just 45-60 minutes, max. So yes, that compliment was very nice and has made me feel very good this week. I am just thankful that my younger son's appointment was only 50 minutes long while I waited in the lobby with my older son. That I did not reach my breaking point thus forcing this fellow parent to retract his praise and consider me to be the lunatic that I am the majority of the time.

Fast-forward to today and I am at odds with my own frustration and anger and I want to YELL at the thing that has brought me to this point. I cannot. They say that Autism is like a puzzle and “we'll keep trying until the pieces fit!” but there are other pieces at play in this puzzle that make up the small bodies in front of me. One of our biggest obstacles this year is helping my 10 year old traverse life with his puzzle pieces of Autism, severe ADHD and Anxiety Disorder. Its a balancing act of figuring out which puzzle piece is being played at that moment, taking into consideration the needs of that piece all the while trying to balance out the other pieces at the same time.

I am frustrated with Adam because we attended a Lego event at a busy store. Unbeknownst to me he brought along a small Lego creation of his own along with two transformers all shoved into his pockets. As we were checking out sofas after the event, he started pulling out these small toys with many pieces and parts. With the new lego creation from the event, he now had 4 things in all AND a pair of noise canceling headphones. As soon as I noticed the toys coming out of the pockets I gathered everyone and we headed out of the door, I wasn't very kind about it. My frustration was evident.

Bringing things along is not new and its not uncommon for kids with Anxiety. They need something familiar, something comforting. My own anxiety of leaving things behind and having my son freak out over a lost toy does not play well with Adam's packrat anxiety reduction technique. Once everyone was back in the car we headed out to lunch, my son was happy with his new Lego creation and my frustration level went back to a manageable level until...

We arrive home and I'm unloading the car, its raining and I want to make sure 2 Lego creations and 2 transformers are stuffed back into pockets as well as the library book my oldest brought along with him, my handbag and cell phone and...”where are your headphones?” The last time I noticed them, they were sitting on a table in the furniture section of the department store while I was shoving toys back into the pocket of my youngest's cargo pants. My frustration level went right back to where it was before and then climbed a few levels beyond that. I'm saying things like, “WHY did you bring those toys...” and “YOU KNOW you aren't supposed to...” and “I'M SO FRUSTRATED with you...” And my son got upset, actually both of my sons got upset. My youngest because I was frustrated with him and my oldest because he didn't understand why I was upset and he was afraid he did something wrong.

And I got mad at myself because I wanted to yell so freaking bad!!!! I wanted to get mad and try and get him to understand everything he did wrong and to learn this lesson so that **I** wouldn't get frustrated again. Ummmm... see that there? I, Myself, I, I, I... Wow. Yeah, that was realization #1.

Realization #2 came a few minutes later after I had shut my mouth. Getting angry at a piece of the puzzle is not new to me. I have plenty of “I hate Autism” days, I let myself have that anger and then remember that no matter what I am feeling, the boys difficulties far far outweigh my own. Today was the first time I really really needed to be angry at ADHD, the piece that was forgetful, the piece that left behind the headphones, the piece that can't think beyond the moment and see how much they will be needed 15 minutes, 30 minutes or even a day from now. So I thought, yes, lets be angry at ADHD! So I started in with the “You know...” and “I'm so frustrated...” but I forgot about the anxiety piece.

He got mad, he got sad, he got frustrated as all these pieces took center stage in defense of his choices. As I watched this unfold I realized that I cannot ever get mad at just one piece. They aren't removable or interchangeable, they are always present and together they make up a really awesome (sometimes frustrating)10 year old. I love that whole little person, every piece and part, with my whole heart. Its unrealistic to think that I won't ever get mad or frustrated again but I will now and forever remember that getting mad at just the ADHD makes about as much sense as being mad at the headphones that were left behind.

We all hit the reset button now. The Hubs went back out in the cold rain for the headphones, we all had some quiet time and peace is once again reigning in the household. Lets hope it remains for the rest of the day, the likelihood of which is about as much as the headphones walking home on their own.

Smiles Staring Back at Me

My oldest son with Autism goes to a special school. We fought for this school and it has been an excellent placement for him, he is calmer and happier. Every Wednesday they have early dismissal and I choose to pick him up on those days and save him from his extremely long bus ride (1.5-2 hours). Spending these hours with just him is a special treat for me and I hope one day he will look back and consider them a special treat for himself as well.

Waiting for him today I look over the picture wall in the lobby, as I do every single Wednesday. My son's classmates faces and smiles stare back at me and I smile. I smile every single time. They are learning, challenging themselves and working so hard and they are smiling and I love that so very much.

Sadness sneaks up sometimes. I'm going along the routine and out of nowhere the unfairness of it all hits me.  It occurred to me in a flash that I am seeing faces of kids of all ages, beautiful faces and huge smilies and I'm sad. 

This one is tall and strong, he is the quarterback of the football team. This one is smiling while talking to his classmates, they obviously respect his opinion, he is most certainly the class president. She is standing at the board doing a math problem, she is that beautiful and smart girl who is universally liked. This group of guys makes up the drum line in the marching band, they rock! 

Except none of this is true. 

What makes me so sad is that it could be true! It should be true and I am standing there looking at their faces and wishing so badly that it were true. 

I know this sadness will pass, the "what could be" will pass along with it. I know this is the grief cycle repeating itself once again and once I get through this part, I will get back to acceptance. I look forward to that, with acceptance I also gain strength. I'll be the first one standing next to my beautiful boy saying, "You want to be quarterback? Lets do it!" but for tonight I will think of those faces and those smiles and wish that all their dreams could come true and that they keep smiling along their journey. 

Pre-Back to School... Analyzing

We've been talking about going back to school this week. A lot. My 10 year old's anxiety hit the roof about mid-week and, in contrast, his 12 year old big brother can't wait to go back. It's made for a polarized house of ups and downs and I'm getting motion sickness.

My youngest struggles in school, Autism + ADHD + Anxiety Disorder (NOS) = a very stressful school experience. He struggles the most with Math although other subjects have specific difficulties as well.

We did some chatting specifically about sitting in math class where I tried to get a feel for what his issues are outside of the learning material, should I ask for his seat to be in a specific spot? Does he need a different type of headphones? Would he benefit from a different kind of paper? Pencil? All that kind of stuff. Basically, can I minimize every other issue so that he can focus better on the subject in which he struggles most?

It was then that I realized a big issue, something that was ESSENTIAL to my own understanding of mathematics, something that could make a fundamental difference:

THERE IS NO MATH TEXTBOOK

 I hate to constantly compare my education in the 80s-90s to education today. There was a lot bad about my education and a lot good but from 3rd grade on I always had a textbook. The idea was that the student would read the 3-4 page explanation of the math principle, which included vocabulary and example problems, then the teacher would go over it in class with more examples. Then we would complete some work relating to those problems. If I didn't understand the vocabulary, I could turn back 2 pages and look for the word in bold. If I forgot a step in solving the problem, I could turn back a page and look for an example that was similar to mine. If I took math homework home with me, the book came too. The fact is that I always had a REFERENCE to the material I was supposed to be learning until I was tested on it.

My son has no text book. When I volunteer, I make copies of worksheets, I tear pages out of workbooks but I've never seen a math book (spelling book, social studies book, language arts book...etc) on/in/near his desk.

This makes me wonder about the progression of education, I get that curriculum is different now and teaching is vastly different than my experience but at what point did books become obsolete? Where are the references and the examples that would help the vast number of visual learners like me and like my kids. Being able to see a page in a text book again and again, allowing a visual learner to take a mental "snapshot" of what is on that page is kinda key to someone who thinks in pictures and/or is a visual learner. You cannot do this with a white board or a computer screen unless you are willing to flash the exact same (to the detail) picture/explanation every time it needs to be referenced by every child. I can remember being in the 5th grade and closing my eyes during a test so that I could picture the page of a long division example, I could even remember the page number. I would have failed that test without that picture in my head.

In considering this issue, I attempted to look at it from the school's perspective as well.  Books are expensive, I get that, I'm a book lover from way way back.  I also hear from teachers that there is a paper shortage. That they are allowed ONE case of paper per school year. Should they require more, they either have to hope a parent donates some or buy it themselves. I'm not at all surprised at the paper shortage when I'm volunteering and making 30 copies of 10 worksheets per week just for math lessons.

The steps to solving a math problem out of a text book:
pull out lined paper
open text book
read instructions
copy problem
solve
repeat
(**no copy paper required, lined paper is cheaper, books are a reusable resource**)

There were a lot of things wrong with the education of the 80s and 90s, access books and reference materials to every student was not one of them. I'm not going to lie, I'm kinda pissed about this. There are many changes to today's education that is in direct contrast to my sons' learning styles and I'm starting to think that the worst of them all is something that should be the easiest to provide. Technology is great, no doubt, but arguably the greatest invention of all time, the invention that spread the most information ever through out the entire world and through out time was the printing press.

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!!**

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.

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. 

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.

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.

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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.
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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. 

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? 

Why I Hate Wednesday

You may have noticed, I kinda post about (ok, whine about) the fact that I hate Wednesday a lot. Like seriously, dread, loathe, hate Wednesday. I probably post this at least once every Wednesday on the Facebook page, and my personal page, and to whomever I speak to that day, and... well, you get the picture. I dislike Wednesday with a burning passion, but have I ever explained why?

I hate Wednesday because to me it is a broken promise, it was supposed to be the BEST day, it is supposed to be the day I look forward to only slightly less than Friday. It's supposed to be the day of the week I get to spend an entire half-day with my 12 year old, but it's not.

It all started when he was in fifth grade and he was really struggling, one blow up lead to another which lead to another which landed us at the NeuroBehavioral Outpatient Unit (NBU) at Kennedy Krieger. This program is no joke, it can be as intense as all day every day for a month or less intense with two 2-hour appointments per week. We did the 2x2 option, more accurately it was chosen for us. One of those days every week was Wednesday. I would take Cameron out of school early to drive an hour, go and do our work in the clinic for 2 hours then drive an hour home. It was physically and emotionally exhausting for both of us. The other day of the week floated for whenever we could fit it in but the constant was Wednesday, we were in clinic every Wednesday for 8 months.

Fast forward, he "graduates" Elementary School and is headed to Middle School! We fought for and got a non-public placement at a Kennedy Krieger School and the consistency is awesome. Every Wednesday this school has an early dismissal which means that we can attend our NBU appointments without having to take time away from school. The appointments are still exhausting but at least he isn't missing instruction time.

Then he "graduates" from NBU!!! Our Wednesdays are FREE!!!!!!  I decide that we will start having "US" time, we will work on some of those real life skills. We will go to the mall and shop for silly tee shirts, we will make a grocery list and hit the store, we will go get ice cream or visit the library or just go home and watch TV together. But that's not what happened.

Research shows that executive functioning, behavior and attention can be helped with NeuroFeedback. The only appointment available? Wednesday.

Neurobehavioral Outpatient Unit has two years of follow-up treatments in the home to help "tweak" the behavior system. The only day the doctor is in our area? Wednesday.

My day to day schedule is a precarious balance between bus pick up and drop off and taking my younger son to and from school. The morning works in my favor but the afternoon is so tight that if I am delayed for any reason or if the bus is early (rare) then there is no one at home to get Cameron off the bus. Wednesdays again seem like a beacon of calm, there is no rushing to beat the bus because he doesn't take the bus on Wednesdays! Except it's not because instead we are rushing back to our hometown because after the early pick-up and NeuroFeedback appointment, we run the risk of being late to pick up my 9 year old from school on time.

As soon as I get home, with both boys, and take a breath... The person from the Neurobehavioral Outpatient Unit arrives for an hour+ appointment where I feel like a complete failure for forgetting to go over the rules before we did our assessment yesterday or I failed to do a BRT session before bed last night.

The problem with Wednesdays is that all of these things are important, so is spending time with my son and so is doing the dishes and laundry. On the days where it is non-stop from bus pick up to bedtime there is no time to prioritize which part of the day holds the most importance. It all feels important.

So I hate Wednesdays. Really, truly, loathe Wednesdays. I want to cancel our NeuroFeedback appointments but he is doing excellent and making progress and I don't want to take that away from him until he has completed at least the initial appointments. I want to tell NBU to go away but we lost 8 months of Wednesdays (plus another day) and to not complete the full program would waste all of the hard work he completed in that office.

This won't go on forever, it can't. The initial Neurofeedback appointments stop around 20 sessions and I am hopeful that we will get the NBU plan in place comfortably and we may be able to drop down to every other week visits. Then, hopefully, you will find Cam and I looking for silly tee shirts at the mall and picking up ingredients for brownies at the grocery store and Wednesday will be the BEST day of the week... like it should be!

Guest Blogger: Tina Shares a Little Bit of Sunshine in a Sometimes Dark World

Billie and Tyler at the Sadie Hawkins Dance 2014

by Tina (a.k.a Sprout), Super Proud Mom of Tyler

If you read Maggie’s last blog post, then you no doubt saw the links to horrific stories that have recently been in the news. These stories are tragic, sickening and extremely infuriating. They make me think and day dream evil thoughts towards these people cowards/animals. But I’m here to share a glimmer of hope in humanity. It’s a small gesture to some but in the world of special needs families, it’s HUGE!

My son will soon be 17 and was born with Spina Bifida (Learn more about SB). He also exhibits many Autistic symptoms. Tyler is mentally behind by many years academically. He’s in the 11^th grade but depending on the subject, he is at a 2nd-3rd grade level, and on the lower end. But he has great communication skills when he chooses to display them and a very bubbly personality, when he chooses to show it.

We’ve lived in our current school district, Liberty, in Missouri, for almost 8 years now and despite a few bumps that are pretty typical, we’ve loved every bit of it. The schools have been fantastic with Tyler and with communicating and working with us. We really couldn’t ask for more. The students appear to be equally special. Now, I’m not delusional enough to think it’s always perfect and that there aren’t those students that don’t accept the special needs students but overall, from what I’ve seen, they are very accepting and interact very well with them. They even volunteer their time for after school activities, special needs programs, inside the classroom and for their end of the year Job Olympics, where the students show how well they can do basic tasks, such as hanging and folding clothes, pet care, basic money handling, etc. Any time I’ve ever gone to Tyler’s school and am in the halls with him, there’s never a shortage of students saying hello to him and giving him high-fives.

Like I previously said, Tyler loves to chat at times and between classes is his favorite time, as well as during lunch time. This is apparently where he met Billie. Tyler doesn’t come home and share everything about his day, in fact, if it wasn’t for his teacher, I wouldn’t know half of what took place in school. The week of Valentine’s Day, Tyler stepped off the bus carrying a big gift bag that was filled with a stuffed bear and a framed picture of Tyler with a girl and another boy. Billie was the girl. I couldn’t get any information out of Tyler but I remember he received something last year from a buddy so I didn’t think much of it. 

Then a little over a week ago, I received an email from Tyler’s teacher notifying me that he had been asked to their Sadie Hawkin’s dance and she thought I should know. When Tyler came home, he was carrying a construction paper invitation folded like a book and it was from Billie. 

 

(Note from Lunatic Autism Mom: awwwww..... How cute is that???)

Tyler was very excited and even willing to stay up way past his bedtime, which is 9 on school nights and anytime on the weekends, although he’s a creature of habit so he rarely stays up past 9 pm. The dance was from 8-11 and he was anxious to stay up. Billie even went to the nurse’s office and requested that her phone number be given to me so we could communicate about the dance. I didn’t find out until the afternoon of the dance that the casual dress code had been changed to semi-formal. I was pretty bummed because I had no time go out and find semi-formal clothes. But I knew we would make it work somehow.

The time came to leave. We arrived at 7:50 and went straight inside where we were supposed to meet Billie so I could take some pictures.  But the time crept by and no Billie. We watched a few other students come in all dressed up and even saw a couple of Tyler’s classmates from his SPED class. Billie sent me a text that she would be arriving around 8:10. I’m sure any mother of a SPED child can easily relate to the anxiety and crazy thoughts that started coursing through my mind. 

Is this a cruel joke after all?
Are the students mingling nearby really waiting on a show that will no doubt mortify Tyler and cause me to go to prison for mass murder? 

I had no indication or warning signs that Billie was in any way playing a cruel joke and I knew deep down that Tyler’s teacher would warn me if she suspected anything, but still. The thoughts came and became stronger as time continued to pass and still no Billie. We exchanged a few more texts with her saying she was on her way and FINALLY, at 8:32 (yes I time stamped her arrival), Billie walked through the doors and Tyler’s face lit up as he crushed her in a bear hug and she took it like a champ and gave it right back.

Tyler has attended other dances before but this was the first one where he was actually meeting someone so I was extra nervous. Hanging out with someone during a 30 minute lunch is far different than spending almost 3 hours with them. So I was relieved to see that Billie didn’t look like she wanted to pull her hair out or couldn’t wait to get away from Tyler. Tyler is a wonderful boy but he has quirks and habits (ticks) that can get annoying to someone who’s not used to being around them for very long. The next day, Billie even sent me a text requesting that I send the pictures I took the night before. She’s a very sweet girl with a big heart and I feel she’s going to do great things in this world…even if it’s by touching the heart of someone in a very selfless way. Tyler said he had a wonderful time and even danced; slow and fast!

So as you can see, we can’t give up on humanity, not just yet. There’s still a huge amount of ugly in this world and as much as I want to, we can’t ignore it. We have to confront it and smother it. And we need to bring more focus on the good, like the story I just shared. For those that are outside of the special needs world, it may be hard for them to understand what the big deal is about stories like this, but for those of us inside, it’s like a pot of gold at the end of a rainbow after a terrible storm. It’s the little things that truly matter.

Thank you for letting me share my story and my first blog post! 

(Thank YOU Tina!! For being my first Guest Blogger and for sharing your story, I LOVED it and I think everyone else will too! ~Lunatic Autism Mom)

Aggression Regression

This morning my son punched me in the face.

Welcome to the dark side of Autism. This is the part where I tell you that not all special needs children grow into gentle giants, this is where I burst your bubble and tell you that special needs children have hormones, emotional outbursts, and feelings they cannot control. This is where I tell you that kids with Autism are human.

I feel the need to say this because of things I've read lately about Autistic kids being held at knifepoint and forced to do things they don't want to do (link to an article that makes me sick) and Autistic kids being filmed and laughed at (link to an article about a teacher and principal who should be fired) and Autistic kids who grew into adults while forced into slavery (link that reminds us to learn from our mistakes). At what point did special needs persons become less than human? How is it possible that there are people out there who can even think this is okay? People DEFENDED the teacher and principal in comments in that article. The owner of the workhouse in Iowa said he was HELPING the men who were slaves for decades. The oldest girl who held the Autistic boy at knifepoint was released pending charges, RELEASED?? How is that even possible?

(Sorry that was off topic but I am super pissed at these stories, all of which have been reported in the last 2 weeks! Unacceptable! Back on topic...)

Indeed special needs people of all ages are HUMAN and as such they grow and mature just like everyone else. The difference is that they may not have the coping strategies to adequately understand their feelings and emotions. I've not hidden the fact that Autism can come with some serious aggression issues, working through them is the hardest thing I've ever been through with my child. He's 12 now and in the throws of puberty and that is not an easy thing for anyone to handle but even more so for a special needs child because they just don't understand what is going on, why they feel the way they do and how to express their concerns and emotions. Cameron cannot tell me he is frustrated. How frustrating would it be if you could not identify and express frustration??!! I got frustrated just yesterday when a pile of papers fell over and I had to re-sort it all. I wanted to throw the whole pile in the trash but instead I just took a deep breath and picked it up. I didn't even take the time to identify, process and plan it, I just did it. Cameron cannot.

So what do you do when you have a child who goes from happily eating breakfast to fighting for his life in a blind rage?

• You keep him safe. You keep yourself safe.
• You identify the problem (if it's identifiable)
• You let him calm down completely.
• THEN you try and work through it. 

Trying to teach any strategy during a blind rage just is not going to happen. He can't hear me, he can't process what I'm saying, he is on auto pilot and he is MAD. He just may not know why. 

I'll say it again because it bears repeating, this is the hardest part of our journey with Autism so far and it has the potential to be far far reaching. Cameron would fight a police officer if he were in a rage and that terrifies me more than I can even express. Cameron fights against me when he is in a rage and it hurts when he lands a good hit but what hurts far far more is when he "comes back" and he is sobbing because he realized that he did it.  Today he was sobbing on my lap for 30 minutes and I cried right along with him for most of it. Its a hard thing to comprehend that someone I love so very much hit me before 6am and worse yet he didn't even know why. 

But I'm a freaking Autism mom, I don't have time to get down about it. I had my pity party on the drive home from taking him to school and now thats done, now I've got stuff to get done. This isn't the first instance, our 5th grade year was filled with extreme mood swings and abrupt changes in temper. We have Psychiatrists, Psychologists, a Special Needs School that is well versed in these issues, and friends going through the same thing. Sitting around being sad that my child had a really rough morning is NOT going to help him and it is not going to help me. 

Figuring out how to keep it from happening again is priority number one, he doesn't like to be that kid and it's my job to continue implementing the plan put in place by the NeuroBehavioral Outpatient Unit at Kennedy Krieger and to work on being more proactive with strategies to help him cope. It will be difficult but he will need hard and fast rules of behavior and will need a thinking roadmap to help him identify and filter through his own emotions so that he can come through the emotion still in tact and not in a blind rage. This is not going to be easy, those things that we do naturally to calm ourselves will need to be expressly taught. 

Secondly, I cannot assume that it is never going to happen again. We have a lot of years left of puberty and figuring out the way the world works... he is going to reach his limit again. I have to be re-trained in safe restraint. I was trained many years ago and the training held until last year when Cameron grew to more than 5 feet and 100 pounds. At that point he was just too big to safely restrain alone. A call to my friends in the Neurobehavioral Unit led me to a class offered by Kennedy Krieger that is somewhat of a self defense class for parents. A typical self defense class teaches you how to fight back, this class teaches you how to block and avoid but not injure the child who is attacking you. That is what I need. 

Today my son punched me in the face. I will figure out why, I will help him cope and I will aide him through this very human journey of growing into adulthood. I am not mad at him, I do not blame him, I am not scared of him, I want to help him and I will. 

Its Never Good When a Suggestion Starts With....

You're a stay-at-home mom, right?

You want to go there? Okay, lets go there.

This was said to me by a Psychiatrist in Baltimore. Baltimore is an hour away from my house. She restricts her office hours to 9am-3pm (school hours naturally) therefore for us to see her and get medication prescriptions my 12 year old needs I have to:

• Drive an hour towards Washington DC to pick up my son from school. 
• Drive 1.5 hours around the Washington DC beltway to the Baltimore beltway and into the heart of Baltimore.
• Have a 20 minute appointment with this doctor. 
• Drive an hour home (because obviously I am going to schedule this appointment early or late in the day).

This is an example for ONE specialist, we have 10. You want to know how I spend my time? I spend my time in the car going to these appointments, then I spend my time faxing, filing and submitting insurance claims for this appointment, then I spend my time on the phone with your scheduling line because you want to move our appointment AGAIN, then I spend time on the phone with our insurance company because you are "out of network" and why wasn't this appointment applied to the deductible and THEN I get to spend time on the phone with Medicaid, your billing people and our insurance company because between the three of you there should be $0 balance. 

So go ahead and tell me your solution that will all be solved because I am a stay-at-home mom.... go on... 

Our psychiatrist wants me to set goals for my 12 year old on socialization, playing nicely with peers and his brother and working within the community. These are ALL good things and I totally agree. To accomplish this she suggests that we use the Maryland Autism Waiver's hours for Intensive Individual Support Services (IISS) and Therapeutic Integration (TI-social skills classes, art therapy, music therapy) while utilizing the resource of Family Training to set goals. The good news is that we have the Maryland Autism Waiver, we sat on the wait list for 8 years and our name finally came up. The bad news is that the waiver is broken and these magical hours only work if you can find a PROVIDER for IISS, TI and Respite. 

Usually you sign up with a group that provides these services, they manage the paperwork and the documentation, keep track of your allowable hours and submit to the Waiver for you. Each month you HAVE to use either IISS, Respite or TI or you risk losing the waiver. So what happens when the group you sign up with have no IISS and Respite workers available and there is no TI available in your area? Then you fire the group that you have been using and you find another one... who has the exact same problem, NO IISS and Respite providers and there are still no TI opportunities in the area. 

So as I was explaining to this doctor, we have the waiver but I cannot find any providers and I am worried that we will lose the waiver. You see the waiver comes with Medicaid and Medicaid pays for the part of this appointment (and all other appointments) that our insurance doesn't and it pays for prescription co-pays. But using Medicaid doesn't "count" towards using the Waiver, only IISS, TI and Respite "counts" so we really need to keep the waiver! 

Her solution:

You're a stay-at-home mom, right? You can coordinate the waiver yourself and cut out the middle man. 

I'm not saying this is a bad idea, it's just an idea based on the false assumption that I HAVE THE TIME to manage the paperwork, coordination, hiring, resourcing, tasking and billing involved. I'm not even saying that it's completely out of the question because I may be out of options since the new group I've signed on with failed to place someone in my house for even an hour of services last month.  So, no, it's not a bad suggestion but PLEASE fortheloveofgod don't assume that I have the time because I'm a stay-at-home mom!!!!!

Given enough time, I could manage the waiver myself.
Given enough time and money, I wouldn't need the waiver.
If I had more time, I would go to the top and try and fix the waiver.
For the people who neither have the time or the money, like us.

(**There will be another post about the Maryland Autism Waiver soon, less rant-y, more informative. Until then, see links below.**)

LINKS:
Maryland Autism Waiver Fact Sheet
MD Department of Education (who implements the waiver)
Waiver Guide for Families

I've Reached A Parenting Milestone!!

Picture of the cookies I just baked.  (Photo credit: Me)

Yesterday I let my kids eat cookie dough. 

Yes, you read that right. I have finally gotten to the point where I determined that their 12 & 9 year old bodies can handle raw dough. Yes, I feel ridiculous at how long it has taken me to get to this point.

Now, in no way shape or form do I condone the use of cookie dough either for medicinal or recreational use. Consuming cookie dough is a slippery slope into much harder doughs like cake, muffin and brownie batter which I absolutely do not condone. (But freaking YUM, amIright??)


Here's how it all went down. I found what I now call the "Magical Cookie Dough". It is not magical because it doesn't contain eggs (it does), it's magical because you make the batter, form it into balls, stick it in the fridge, then bake them cold after smooshing them a bit. This hits ALL my "perfect Mommy" buttons because:

1. I am making them from scratch so I can control the ingredients, use organic when I have it and if I want to and keep out all the stuff that I'm constantly trying (and often failing) to control. 

2. I get to have that "perfect Mommy" moment when the kids get home and I get to say, "who wants fresh cookies still warm from the oven?" Of course I'm singing it and my voice is perfect because hey, thats how I roll.  

So in my mind we're sitting around this perfectly clean and tidy kitchen and enjoying our afternoon snack, and it totally would have been clean and tidy if I had not just mixed cookies hours before and then life got in the way but whatever... we're sitting around the table and I take my first bite of the Magical Cookie which has allowed me to live out this perfect Mommy fantasy and I say, "ugh! The dough was better!"

And it was, it has cream cheese, butter (organic of course), more brown sugar than white sugar, extra vanilla and of course the aforementioned eggs, the dough was delicious. Then I hear...

(*gasp*) "You ate the dough?? I want the dough!" Thank you, Adam for catching that and everything else I say that I shouldn't. Eating dough in our house was strictly verboten and in the past I had to sneak my love for cookie dough into the pantry, the laundry room or even the garage.

It was then that I realized that my boys are NINE and TWELVE! By the time I was 12 I would make brownie batter with absolutely no intention of baking it at all, I was mixing and measuring only so that I could eat the batter. Of course after a few spoonfuls my stomach would start hurting and I would bake off the rest because it really is a sin to let good dough go to waste. So it was completely ridiculous that I was keeping the boys from the great wonderfulness that is cookie dough.

I had only baked one cookie sheet of the dough balls from the fridge so there were still a lot left over, I got out three cookie balls and gave each of us one. I did the prudent parent thing of telling them that the ingredients in the dough were raw and it is not a good idea to eat some raw foods but just this once they could try the dough.

We all agreed that the dough is indeed better than the cookies and that I would continue to bake a few more sheets because you can't take raw cookie dough to school in your lunchbox. With the added bonus that I got to have another perfect Mommy moment when I included two homemade chocolate chip cookies in each box this morning.

So thats the parenting milestone I've reached this week. I feel it is pretty monumental. Maybe not as monumental as when I let The Hubs take the boys (BY HIMSELF) to visit my in-laws on their uncleared retirement property in New York that has no running water, no sewer and no electricity. I was pretty much convinced that the boys would come home broken in some way shape or form, but they didn't.

I patted myself on the back for not freaking the hell out that weekend and today because sometimes being the Perfect Mommy isn't about controlling everything that goes into their mouth, sometimes it's about letting them eat the dough and then hiding the rest in the back of the fridge in an empty container that used to contain non-fat, sugar free, unflavored yogurt because there's no way I am sharing my stash!


PS: The Magical Cookie Dough recipe is actually Softbatch Cream Cheese Chocolate Chip Cookies from blog Averie Cooks, which I found through Pinterest. Recipe HERE.

My Not Very Popular Opinion

This is my thoughts on full inclusion programs.

This has been something on my mind for a while and I hesitated to write about it because it goes against the current "norm" of the public school system model.  This became of great interest to me last year when I was looking for a middle school program for my 11 (now 12) year old. I wanted to look at each school, how it organized, how they handled inclusion and what types of supports were available in the middle grades.

I set out to learn all I could about special education in the middle school setting, charter programs, magnet schools, non-public placements and private schools (expensive!!!). I looked in my county, other counties around ours and even other states. I found a lot of information including accommodations, modifications and ideas for transitioning into Middle School but also I found instances of continued segregation (Washington Post) and how charter schools may be contributing both to continued segregation and reducing funds available to special needs students (Huffington Post & Aljazeera).

So then I took the information I collected and applied it to MY situation and MY boys and what are OUR options? How does all this good, bad and ugly apply to Autism, ADHD, Aspergers?

For example this article tells us that charter programs cannot turn away a special needs child but that they often aren't equipped to handle them therefore the majority of the time special needs students remain in the public school setting. And it was then that doors started closing and I started to get mad.

Charter Schools do not receive all of their operating costs from the school system budget but they receive a large amount. Magnet Schools (gifted and talented programs) housed within the school system do receive all the operating costs from the school system budget. BOTH of these programs are closed to kids like mine, one isn't equipped to handle their needs and for the other, my kids don't qualify. Which means mine are excluded.

So I went looking for the specialized program that will meet their needs and found NONE.

In a school system that has two charter schools and a magnet program, they have NO program to meet the needs of a high functioning special needs population. In many cases high functioning special needs students cannot always be included in the typical public class setting, large class sizes, constant changes in routines, massive amounts of distractions and stimuli make it almost impossible for them to learn. These kids (MY kids) cannot learn in a standard class setting but many are at grade level and diploma bound.  For them it is a constant challenge just to exist within a typical class setting, much less access the education they are promised.

Can the kids in the charter schools and magnet programs learn in a standard class setting?

Yes.

School districts are allocating funds to teach kids in a specialized setting because they won the charter lottery or because they are super smart but there are no specialized programs for my child who cannot learn in a regular classroom setting. Why does "least restrictive environment" not apply to them but it is the ruling fist of law that special needs parents need abide?

So there, I've spoken out against Charter Schools and Magnet Programs but here's the kicker, I'm NOT OPPOSED to those programs. I have friends who have kids in the charter schools and in the magnet program and I am very happy that their kids have that opportunity.  I am not opposed to the parent who wants the very best education for their child, I want the same for mine as well. I just cannot understand how a school system can create specialized programs for kids who are fully capable of functioning within a typical class setting and yet completely and wholly dismiss the needs of the kids who cannot.

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As an aside I would like to speak about segregation which is something that I just cannot abide. I am saddened by the research I found that it is worse now than 40 years ago. This both hurts and infuriates me. I read a quote where someone suggested that all schools within the same county (city or district) are fundamentally the same which begs the question, if they are all the same, why not let families chose the school they want? I think then you will find very quickly that there are schools who have better teachers, better resources, more money. When 90% of the school age population asks to attend one school, you have to wonder why....