Making the world better

After a stressful week, I was bracing myself for what I thought would inevitably be a bad day. I've been spending some late nights stressing over the details of my nonprofit, knowing that I can only do so much as one person, while always wishing that I could do more. I am forever dreaming of how my life would be easier if I could only clone myself, just to help alleviate some of the heavy burdens I bear with my family, as well as the volunteer work that I am so passionate about. I'm not proud to say that at one particularly low, yet fleeting, moment while in my car contemplating the zillions of things tumbling around in my brain, I succumbed to the overwhelming need to cry. It stopped almost as fast as it began, but I guess my body had reached its maximum at that moment and needed to release whatever was pent up inside. Needless to say, I didn't hold any high hopes for the day after that.

Then, it seemed that the proverbial clouds parted. What started out seemingly dreary, turned out to be about as good as any day could have been.

One of the highlights of my day was a meeting I had with one of our nonprofit's partners, which is another local nonprofit. I won't bore you with the details (which I personally find fascinating), but the time we spent was very fruitful, and many ideas were shared, plans were made, and we parted with a renewed commitment to what we are endeavoring to do together.

However, the best part of the entire conversation was how our respective mission statements align in the idea that we are looking to change the way the community, John Q. Public, views special needs. Rather than special needs (like autism and others) marking a difference that separates and ostracizes, wouldn't it be great if special needs were normalized in such a way that the entire community helped to advocate, and in doing so, created an environment of inclusion? We had some discussion about the nuts of bolts of this kind of vision for the future, and it all comes down to thinking about what your dream is.

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What is the big picture? What do you want to accomplish? How are you going to work to make the world better for the thing you are most passionate about?

I left the meeting feeling invigorated, with a renewed sense of purpose. It added fuel to my fire, and my head was spinning with possibilities and inspiration.

Then, many other things fell into place today in just the right way with my schedule and "to do" list, and I ended up being phenomenally productive. It was odd...but I wasn't going to question it. I just wanted to ride the wave of a good day.

When the boys got home, I found out that they both had a decent day at school, that they had finished their schoolwork early (by some apparent miracle) and neither had any homework to do. The best part? They were in good enough moods that they didn't automatically catapult into their usual bickering and fighting mode after they got home. That in and of itself was a moment of relief.

We had an appointment to go to, and due to the timing of it, by the time we had to head back home it put us right in the thick of rush hour when all the commuters are heading home from their jobs in Seattle. If there's one thing you can count on in Seattle, the traffic sucks pretty much all the time. The particular area I had to travel through is known for its slowdowns, so I had no expectations of getting home at a decent time. I have learned to take the back roads, but even they can get backed up. To make matters worse, my tummy was protesting the fact that I hadn't had time to consume any food of substance all day, besides the quick coffee I grabbed after my meeting.

Remembering that I had forgotten to take something out for dinner and that we desperately needed to go to the grocery store, I was overcome with a craving for pizza. I didn't want to scrounge around for something to make for dinner when we got home! I called Titan and tried to tell him in code (so listening little ears wouldn't freak out with excitement...or dismay if plans fell through) that I wanted to meet him for pizza on our way home. Using euphemistic terms, we hatched a sly plan for remedying my hungry stomach. There is one place that is our favorite for gluten-free pizza, and that's where we headed. Luckily, there was no fighting between the boys in the car like usual, so I wasn't a complete stress case when we arrived. Traffic was actually decent, too! I was looking forward to an enjoyable meal with some of my favorite food.

After we sat down and placed our order, Prince Charming started talking. Mind you, he hadn't really conversed since we got to the restaurant.

All of a sudden he said, "Mommy?"
"Yes, sweetheart," I replied.
"I'm going to make the world a better place."

His eyes were really bright and sincere and he gave me the biggest grin, displaying his dimple. I melted on the spot.

It's almost as if he had been reading my thoughts and had been sitting in on my meeting. I don't think it was a coincidence. I think God gives us little moments like these to help us know we are on the right path. It's exactly what I needed.

I have no doubt that my little guy will make a difference in the world, and that the world will be a better place because he is in it. And, I too will try my best to make the world a better place. I'm already working on it. I can only hope that my boys will see the fruits of my labor someday.

What is your passion? What inspires you to make the world a better place?

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You have a spine! Now use it!

This story starts with a keychain. A spinal column keychain.


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About 6 years ago I was just beginning my journey of understanding autism. I was trying desperately to connect with support groups in order to get some help with my boys. There were only a few groups in my area at the time, and they all seemed to be falling apart to some degree or another.

I managed to find a group that I really liked, and although it was slipping into oblivion, the leader took some time to connect with me. She saw my earnestness. She became my mentor. She became my friend. She helped me to become the mother, advocate, and leader that I am today.

One day she showed me her spinal column keychain. She told me that every parent of a child with autism or other special needs needed to have one. I gave her a cursory nod, but truly didn’t understand the importance of what she was telling me.

I get it now. I completely get it.

At the beginning of my family’s journey, I was going through the motions because I didn’t really know what else to do. I spent many nights up at all hours, scouring the vast Google universe, trying to glean whatever knowledge I could about autism, schooling, therapies and the like.

The word “advocacy” was an enigma. I knew it at a visceral level, but I didn’t truly understand what it meant.

I continued to learn. I began to question the status quo. I began to demand more. My kids deserved more. I became a more powerful and informed mother.

I realized I had a spine and I needed to use it. I needed to no longer be afraid, but be strong and stand for what I believed in for my kids. I needed to consider myself the expert. I was THE expert and I had to trust myself in that role, even more than putting my trust in so-called experts with lots of letters behind their name. I AM THE EXPERT.

Things will never be the same as they used to be, because I became an advocate.

As you know, I run a nonprofit organization and a support group. Advocacy is part of my job. The words, “find your spine and use it” are now the foundation of all advocacy training I do with families. It is that important. It is the first step to becoming an advocate for your child.

Advocacy is a bit of a game. A dance, really.

Parents need to feel empowered and claim their expertise regarding their own children. If they can’t do that, or aren’t willing to try, then they won’t get very far. And, they certainly won’t get their children what they need. You will need to learn how to hold other experts accountable for their particular responsibilities in your child’s life. In doing so, your child will be better served.

Advocacy doesn’t automatically mean a battle. But, it means you need to think like a warrior. You need to be proactive, and you need to be willing to stand for what you believe in. You need to find your inner mama bear and arm yourself with information and intention.

Preparation will put you in a better position to get what you need for your child. The proof is in the pudding, and in this case, documentation is king. Whoever has the best data wins. Take notes about everything because you never know when you will need a particular tidbit of information to prove a point or make a case.

This not only applies to educational advocacy, it applies to medical advocacy and more. When you know what you need and you aren’t afraid to ask for it, and you have documentation to prove your point of view, then you will have infinitely more success.

Parents who always defer to the “authority” or the “expert” will generally be treated as a doormat. It might not feel that way at first because everyone is being so helpful to you and your child. But, this helpful attitude can sometimes come from a place of them being allowed to do whatever they want and not having to be questioned about anything in the process. The cooperative parent is always the easiest for them to deal with and they’ll have smiles on their faces when they see you coming. But, over time, your rose-colored glasses will become less rosy as your child gets older. You will begin to see the holes and issues as they really are.

I feel sorry for the children of parents who don’t want to deal with anything because it’s too overwhelming, and they would rather completely bury their head in the sand. Those parents will not get very far until they are willing to see the truth for what it is. And, sometimes the truth is ugly. Avoiding the truth isn’t helping the kids that really need the help. I worry about the long-term future of children in these types of situations.  

I have seen over and over again that experts respect an informed parent. They will treat you differently when you have demonstrated your expertise and that you are willing to ask questions and hold them accountable. They will recognize that they can’t get away with steamrolling you, pulling the wool over your eyes, or placating you as a distraction. They will treat you as an equal and you will often get much further toward the desired outcome for your child.

It's always best to use a personality of sugar and spice and everything nice, but you have to also be willing to let them hear the mama bear growl in all the right places so that they know you mean business. Only unleash the mama bear when necessary. If you overdo it, then you are shooting yourself in the foot. A constant negative personality or an attitude that doesn’t consider compromise will get you nowhere fast, and you will find the experts will fight you harder and longer than before. And, that is something that none of us want.  

There are exceptions to every rule, and I’ve seen my fair share of them. But, as a general rule, parents who have found their spine and are willing to use it, will get much further to help their children than those who are wet noodles.

I encourage you to think about your spine and how it relates to being a better advocate for your child. It certainly isn’t easy, but please find your spine and stand tall with me…for all of our kids.     

Inclusion vs. Segregation

This topic has been coming up a lot lately for me. It’s relevant in schools, in families, in circles of friends, and just in living life with a child that has special needs in a world that doesn’t always understand or tolerate them. It’s the argument between how to keep our kids in a safe and appropriate environment, and how to balance that with living in the real world.

Those of you that are raising a child with autism are well aware of the challenges that come with taking your child out into public, particularly when they are younger and less able to control their actions. This can be made worse when they do not have words for communication. Some of our kids that are more significantly affected will show their differences more obviously. You might take a look at them and just know that something is going on. Others that are less impacted by their diagnosis have more “invisible” symptoms. These less visible traits can be the bothersome things that get a child labeled as a “brat” or the mother as a “bad parent” when they are out in the real world.

In our schools, parents can fight bitterly for keeping their child in a self-contained setting because it is the most appropriate for their needs with the additional supports they might access in those classrooms. For others, the fight is to move the child out of that environment because it is stifling their growth and they need exposure to typical peers in a mainstream setting. Each can be equally appropriate, depending on the child.

A few weeks ago, a good friend of mine told me about a trip she planned for her kids to go out for dine-in fast food, with the assistance of their ABA therapist. This took some intent and planning and did not happen overnight. They made sure to go at a time that was off peak hours so they would have a better chance to escape without a meltdown. The trip out to the restaurant was no easy feat, particularly since she has 3 young kids diagnosed on the spectrum. She was dreading it, but knew that it would provide much needed practice for her kids, and it would be helpful to have the support of the professional that would accompany her that day.  

As you might expect, the experience had a few hiccups. And, someone at the restaurant could not resist making an intolerant comment when her youngest son started acting up. As a parent, when those things happen, you try that much harder to try to make your kid fit the mold of what is expected in public, and you become keenly aware of how different they are in that moment. It can be excruciating to try to overcompensate and do anything to make things better when you are the target of negative attention like that. She maintained her calm, but this person could not resist continuing to make disparaging remarks. And, like probably anyone in her shoes would do in the same situation, after a certain amount of time passed and the agitation increased, she let him have it. Loudly.     

I have had plenty of moments when Grumpy Badger was wildly melting down in public while we were waiting to check out at the grocery store, or when he would start screaming in the library, etc. I got my fair share of judgmental and searing stares, as I avoided eye contact with others and tried to rush my boys out of the situation before it got even worse.

I tend to be fairly non-confrontational, but those experiences taught me something. As a parent, you have to find your spine and use it when needed! Sometimes you have to be willing to provide an impromptu autism awareness lesson for those around you. If you can do it without yelling or breaking down into sobbing, all the better.   

Things have gotten a lot easier for us as we venture out beyond the doors of our home. We are no longer in crisis all the time. My boys have grown in their skills and abilities, and they are gaining maturity in certain areas. We have our moments when things are still difficult, but it’s definitely not as hard as it once was. For that, I’m thankful. But, I also vividly remember what it was like. And, I know so many people that are continuing to go through these situations daily and may not ever know what it’s like to have a reprieve.

This topic came up again when I was recently interviewed by a college student about the challenges of parenting a child with a special need. She was specifically looking to learn about the perceived societal stigmas and how parents cope with those pressures. I realized that the way I deal with the stigmas and expectations is very different than when I first became a parent.

To be blunt, I don’t give much of a crap anymore about what people think about me, my kids, or my parenting. This is autism, and it ain’t always pretty.    

One of the things I have been working on through my nonprofit is the normalization of differences and creating tolerance for special needs in all settings. I have given many presentations touching on this topic. It’s needed everywhere. Through educating and bringing awareness to a group of people interacting with the public (which includes families that have children with special needs, like mine), some of those people become the catalyst for change. They can take the information to heart and forward on their new perspective to others. I know it works. People have told me how they’ve shared the message, and it’s gone far beyond them after they heard me talk one day. The word can spread when people are willing to listen. The impact can be far-reaching.    

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I just read a very interesting article posted on March 16, 2013 from Amy S.F. Lutz in Slate Magazine on this very thing. Please take a moment to read it here. It’s well worth a few minutes of your time! She provides a lot of context and makes you really think about this idea of special needs segregation vs. inclusion.

For me, it is a very loaded topic because it touches on so many things.

I can’t help but draw a parallel between the intolerances shown toward people of different races and the intolerances shown toward people with both visible and invisible disabilities. It’s like we have a new “ism” now, but there is no defined name for it other than discrimination and intolerance.

A new form of segregation can be found in a self-contained classroom, whether that’s good or bad.

Self-inflicted segregation happens when parents will bend over backwards to conduct errands at off-peak times, trying to avoid large audiences and be as inconspicuous as possible. I have done this more times than I can count. It’s usually much safer at home, and this is why so many autism families feel so isolated.

We know that the world isn’t ready to deal with the influx of children and adults with autism and other special needs. As parents, we are trying to prepare our kids for the world and also prepare the world for our kids.

Have you thought about how to educate others and create awareness without it feeling confrontational and creating further discord? What works for you? What hasn’t worked?

If you haven’t yet thought about it, maybe now is the time.             

 

The R-Word Needs to Go B-Bye!

 

Children with special needs should never be made to feel “less.” They may be different, but they are not less. (Thank you, Temple Grandin!)

I am fortunate that I have never heard the R-word uttered in my presence as it relates to any child. Yet, I know it is happening. All over the place.

Children and adults that have challenges, along with their families, are being made to feel like they don’t deserve to share the planet with the rest of the population. Judgmental people and hurtful words run rampant.

When I hear stories of people I know, bloggers and friends, having to experience this sort of discrimination, it saddens me. It’s not easy to live and thrive with a special need or an intellectual disability. Families go through a lot and they do not deserve to be ridiculed. You would think that we as a society would be more tolerant by now.

There is still a lot of work to do! It can start with you.

Spread the Word to End the Word.

Visit http://r-word.org and learn more about how you can make a pledge and participate in activities near you.   

Book Review & Giveaway: Easy to Love but Hard to Raise

Have you finished your Christmas shopping yet? Well, today I’m trying to help you out a little bit with that. I have a book that is perfect to give to your extended family members who maybe need a little insight about special needs. Or, you can keep it as a nice gift for yourself as a reminder that you are not alone.

I was contacted by DRT Press about the new book, Easy to Love but Hard to Raise: Real Parents; Challenging Kids, True Stories, edited by Kay Marner and Adrienne Ehlert Bashista. They didn’t give me a big, fat check to say nice things about them, but they did send me a shiny, new copy of this book in paperback. I was cool with that because I love books, and may even have a slight problem with them - you should see all the books in my office…

You, my friends, now have a chance to win a copy of Easy to Love but Hard to Raise for your very own! It’s like a little bit of Christmas from me to you (courtesy of DRT Press). J

The editors set the tone for the book when they gave their acknowledgements:

…to all the parents of children who are oh-so-easy to love, but so hard to raise. May you find hope, community and kindred spirits in these pages.

You know you are in for something real when you see a statement like that.

There are stories written by 32 parents that describe situations they’ve had with their children. Between these anecdotes are brief Q & A sections with 25 experts that discuss related issues. This is a unique approach and it provides a nice contrast in content.

Rather than focusing on my favorite moments from the diverse stories shared within its pages, I find myself more drawn to the intent of the book.

I really appreciated the Foreward written by Dr. Edward Hallowell. Here is an excerpt taken from page xi:

Some kids are easy to love. Some kids just sail through childhood getting love wherever and whenever they need it. But then there are the kids who live in alphabet soup. They are not so easy to love. They can be difficult, distant, disobedient, defiant, dangerous, even delusional. They can leave a parent crying herself to sleep every night, they can leave a parent feeling guilty for having negative feelings, they can leave a parent despairing that the child will ever find a way in the world, they can deplete the store of love every parent starts off with.

But they can’t deplete it for long. That’s what’s so amazing about these parents. They keep on going. They never give up. They give their all, and then they find more all to give. They are paragons of the best of the human spirit. And they earn this praise in the hot and dusty arena of the struggle to raise a child who can seem, at times, impossible to raise.    

Yes!

Yes. He gets it.

With the Introduction from Kay Marner, we realize the true meaning of this book. It is this intent with which I write my blog. These words could have just as easily come from me and they speak the truth of what many of us parents in the trenches seek to do by reaching out to others.

No, I’m not a parenting expert, but I am an expert on my child and the complex and contradictory emotions that come with raising her. In time I’ve learned that there’s value in sharing these emotions. Expert advice is not the only thing struggling parents need. We also need to know we’re not alone; to know that other parents are going through similar experiences, making similar mistakes, and searching for similar answers. We need something experts can’t give us: we need each other.

Absolutely.

There’s really nothing more to say, is there?

If you want to learn about how other parents are dealing with ADHD, SPD, OCD, PDD and other diagnoses, than you should definitely take some time to read this book. The parent perspective is a refreshing change from the dry, scientific “experts” that we all read in our spare time between the various daily crises, adventures and attempts to sleep.

One thing is certain, if you hadn’t already figured it out: you are not alone.

Thank you to DRT Press for giving me a chance to read this book, and also for allowing me to give away a copy to my dear readers. To learn more about this book, visit www.easytolovebut.com or www.drtpress.com.   

*UPDATE as of 11/30/12 12pm Pacific*
There have been some technical difficulties with the giveaway widget since I posted this 12 hours ago. I started out with Rafflecopter and had a couple of entries, but ultimately I had to trash that one. I have to apologize to those that entered via Rafflecopter - I have no idea who you are...sorry. You will need to re-enter with the new widget. I replaced the old widget with a new one from PunchTab that seems to be doing better, unless you are on Internet Explorer. So far, it does not appear to work in IE at all and will not get past the "loading" screen. You will need to use Chrome or some other browser to enter the giveaway. SORRY for all of the issues this time around.

I’ll announce the winner of the giveaway next week! Good luck, everyone!

Wordless Wednesday: Air Show!

Last month I was invited to participate as a vendor at a special needs VIP event on the day before a big military air show. Not only did I get to go, I was able to get permission to bring my boys, my husband, and Miss C! The weather did not cooperate and a good portion of the show was ultimately cancelled, but we still had a lot of fun!

In the hangar before the air show, we were hanging out at my vendor table waiting out the weather. The Thunderbirds jets are behind the boys.

Miss C had just helped the boys get pins on their coats from the Thunderbirds flying team. Men in flight suits everywhere...
She was loving the scenery! ;-)

I saw this sign and had to take a picture of it! It says:
WARNING
Restricted Area. It is unlawful to enter this area without permission of the installation commander. While on this installation all personnel and the property under their control are subject to search.
USE OF DEADLY FORCE AUTHORIZED
This area is patrolled by military working dog teams.

And, I HAD to get a picture like this! Monkey is such a rebel. Well, insomuch as his mommy forced asked him to pose this way.  

Preach it, Holly!

After being away from the computer most of yesterday, I found a quiet moment to check back in on all things social media. In my news feeds I immediately saw a lot of chatter from my autism friends about Holly Robinson Peete and 50 Cent. As they are both quite famous for very different reasons, I was intrigued and read on.

On Twitter, 50 Cent had apparently insulted someone that tweeted him by telling this person that he looked autistic. This ignorant quip had the ill-intended effect of the "R" word. Then, 50 Cent followed it up with another comment mentioning special ed. Of course, I was disgusted.

But, I gotta tell ya something. Autism parents are a fiesty bunch! As I was reading about this fiasco, I was thinking about how I could write a very spirited blog post without making him want to get a restraining order against me.

However, I saw that Holly Robinson Peete was leading the charge. I read her letter to 50 Cent and I have to say that she did a first rate, bang up job. I could not have written it any better myself! She was appropriate, informed and powerful. It's all the more reason to like her!

Holly, thank you from the bottom of my heart for representing the autism community so well. It is efforts like these that can help make change in the hearts of people everywhere.

To read the letter Holly Robinson Peete wrote to 50 Cent, click here.

To read a post from Lisa Ackerman of TACA about this, click here.

To read a post about the incident over at Strollerderby, click here.

Oh, and if by some miracle 50 Cent is reading this post, I have something I'd like to share with you...

50, this is what autism looks like in my boys. And, if I do say so myself, it looks damn handsome.

Photography by Dana Napoleon

Rant complete.

Happy Independence Day!

   

I think, therefore my head hurts.

There are a few posts I wanted to write in the past couple of weeks, but things have just not materialized. My mind is swimming right now with everything going on in my life.

I feel like I've been notably absent from the blog recently and I probably needed to at least check in and let you guys know I'm still here. I'm alive and kicking, but I'm always on the go! I barely have time to eat, much less write a witty, awesome post for you to read! Because, as you know, ALL of my posts are witty and awesome! (Did I just hear a retching sound somewhere?)

I have been so busy working on the nonprofit - having meetings, advocating, speaking, writing, event planning, thinking, reading, strategizing, organizing, creating and dreaming - that I've barely been home the past two weeks. Make that this month. Well, if I'm honest with myself, I've been at a dead run since the end of February. 

Last week I realized that in only a few more weeks, school is out for the summer. Talk about having a heart attack right then and there! How and when did this happen? I didn't give my permission for time to move this quickly! There is so much work to be done before the end of the year!

I just have to say that even though my schedule has been out of control and insane, I'm happy. I am 1,000% passionate about the work I'm doing, even though I'm not yet funded. I could not ask for a better or more supportive husband, and I have the world's greatest friend in Miss C. Without their support, the nonprofit work would be impossible.

And you know what? People are showing up. To participate. To volunteer. There are some really great people choosing to get involved with what I'm trying to do and help me create something worthwhile and valuable to the special needs community. That right there is astounding and humbling.

When the kids are out on summer break in only a few short weeks, my schedule will clear for the first time in months. Even though I dread summer break and what that transition will mean for my boys, I think there will also be a small sense of relief as well. The thought of slowing down long enough to catch my breath is kind of thrilling! Work will not cease, but the intensity will lessen. And, this is going to sound crazy, but I'm looking forward to doing some plain old filing! I also hope to finish organizing my nonprofit's office and finally getting the last of the stuff out of boxes and into their proper places. I think that will be a good summer project.

Something deep inside me tells me that I'm doing what I need to be doing, and it's happening at the right time. I am convinced that this is going to all work out somehow. Even though there are hurdles and obstacles, things will all fall into place. Personally I have a lot of fears and worries, but God is giving me a sense of peace. Doors have been opening and I am just walking through them. In fact, I can't wait for the next doors to open so that I can walk through them, too. Bring on the doors!

That's where I'm at right now. It's a good place. A bit nuts, but good.

For the final push into summer over these next few weeks, it will be hit or miss around here. I will try to post once per week (and I'll be pretty darn proud of myself if I do more than that!). I hope to see you back here early next week when I will feature a new giveaway. Be watching for that!



Guest Post: Why me?

Today I have the privilege of introducing you to one of my local friends, who also happens to be a fellow autism mom. She does some great work in the special needs community. I appreciate her personally because of her generous spirit. She has been willing to share some of her time and expertise with me in order to help my nonprofit get off to a good start, which I am very grateful for.

Jennifer does not yet have a blog, and to be honest, I'm trying to convince her to start one! She likes to write (and is really good at it!), so publishing content online seems like a natural fit for her.

I feel fortunate to have her share her very first written piece with us here at Caffeinated Autism Mom. Once she gets past the nerves of having a post "out there" in the big blogosphere, I have a feeling that many more posts will soon follow. When she becomes well-known online, I can be like a proud mother hen and say that I knew her before she started blogging!

Jennifer's son, Zachary

As the Communications Manager for Dynamic Partners, California-native Jennifer O’Neal uses her writing skills to raise money so that other families can receive the same life-changing services her son did. She is also a Board Member at Academy Schools. Jennifer lives in Seattle with her husband, Dave, her effervescent 8-year old son and muse, Zachary, their two dogs, Maggy and Honey Bear, and sassy cat, Stetson.  You can reach her via email at jroneal at comcast dot net or on Twitter at @Jennifer_ONeal.

Please join me in extending a warm (and caffeinated) welcome to Jennifer! After you're done reading, I hope you will take a moment and leave her a comment below. Let's show her some love, peeps. :-) 


"Why me?"

We’ve all asked this.  “Why does my child have special needs?”  Although we may be outwardly hopeful, somewhere there is a corner of our minds where this question lives.  We might have thought it only happens to other people.  We may have believed we had cosmic exception; a guarantee that our children would be ‘typical.’ There is guilt. There is blame.  There are moments when we feel powerless. 

But are we?

Maybe, just maybe, these children are gifted to us because, with the right catalyst, we are people who will take action. 

Some of our actions will be large.  We will lobby insurance.  We will speak at the state capitol.  We will volunteer.  We will choose a new career path so we may help others.  We will create services and support groups to help our peers.  We will advocate change.

Some of our actions will be quiet.  We will help another parent find services.  We will comfort.  We will be that late night phone call.  We will believe in possibility, not limitation.  Some of us are just realizing our potential for action, but we will get there.  Collectively, we will move the needle towards a better life for the children entrusted to us. 

Some days are hard and that is okay.  Some days we have errant thoughts about typical children and the road not taken.  And a tear falls.  And that is okay too.  But we know that, every day, our children give us the opportunity to be a better person than we were the day before.

Above all, we are grateful for our champions; the people, services, and programs that have empowered us as families.  We have been championed by those we may never meet; the generous people who give time, money, and resources so that services can be expanded, therapy centers can be built, and more families can be served. 

To show this, we will engage our family, friends, and community members to help more children with special needs.  We ask you now to join us, take action and become someone’s champion.    

Perhaps the question should be:

“Why not me?” 

- Jennifer O'Neal

  

Book Review & Giveaway: The Golden Hat

Last April I first shared with you about Kate Winslet’s upcoming book entitled, The Golden Hat. I was intrigued by how she became friends with an autism family following her experience of voicing the English narration of their film, A Mother’s Courage. The documentary chronicled the story of Margret and her son, Keli, a teenager with nonverbal autism.

Kate shares how she became emotionally invested in the family:

Through working on the film, I entered a new world of families with children who have autism, where the challenges they face daily are profound and overwhelming. The look on Keli’s face when he typed his first words to me touched me as a mother, and as a human being. I witnessed Margret discover her son after years of silence. As a mother of two very verbal, expressive, affectionate children, it wasn’t enough to provide this narration alone and to simply walk away.

Taking inspiration from Keli’s new ability to communicate and a poem he wrote about a magical Golden Hat. The hat that Keli described could help a boy without a voice to talk. Kate decided to send around one of her old hats and ask celebrities to take their self-portrait.  She asked that those who took a photograph while wearing the hat would think about those individuals with nonverbal autism and then express something important to them.

Margret begins her story with the following:

Imagine waking up in your bed, just as you are now, with all your mental capacity and intelligence. In your mind, you know that everything is the way it is supposed to be…except one thing. Your senses are all mixed up. You cannot see and hear at the same time. You only get a fragmented view of your environment. You have little sense of where your body is. You cannot speak. You have no voice.

Margret had been told that her son, Keli, only had the capacity of a 2-year old. This obviously tempered the way she treated him. It was incredible to read about how everything she thought she knew about her son was actually incorrect, like when she learned his favorite authors were Twain and Tolkien and not Teletubbies. I can hardly imagine how she must have felt when she realized so many new things about her son. Particularly heartbreaking was her description of some medical issues her son went through. A child without speech is exceedingly difficult to diagnose!

The more I read, the more I wanted to learn about her son’s story. In fact, I added her documentary to my Netflix queue. I can’t wait to watch it! I am interested to see how Keli progressed from nonverbal to communicating through the RPM (rapid prompting method) via HALO in Austin, Texas. I actually know a local family who utilized RPM and HALO and I can’t wait to learn more about it and about Keli’s journey into communication.  

I love how Margret ends her chapter:

Now imagine going to bed. Everything is as it is supposed to be, except one thing. Your senses are all mixed up. You sense your surroundings in a fragmented way. But you are assured. You know that you are among people who care for you. People who are willing to fight for you and do their best to lend you a voice. You close your eyes, knowing that when you wake up the next morning, you have the means to communicate your desires, wants, and feelings.

Now that’s something to be grateful for.

For me, The Golden Hat: Talking Back to Autism was well worth the read even if I hadn’t seen the pictures and quotes from the various celebrities. I was enthralled by the stories from Margret and Kate, and it was really interesting to read the various emails that went back and forth between them as the book idea and The Golden Hat Foundation came into existence. I love the genuine spirit between these women and know they have forged a friendship to be cherished.

I especially love that all of the proceeds from the book will benefit The Golden Hat Foundation, which seeks to build innovative living campuses for people with autism.

The celebrity photos and quotes are just icing on the cake. The sheer number of famous people who participated in Kate’s book project is pleasantly surprising. The book gives the feel of a more substantial coffee table book, with full color photography (albeit candid self-portraits taken with a point and shoot camera). Some celebrities really took the project’s intent to heart as they provided their quote. Others? Not so much. But, the result is an eclectic mix of perspective that is fun to read through.

Some of the most touching quotes are from individuals on the autism spectrum who are nonverbal.

At the age of 14, Keli communicated, “I am real.”

In response to the question, “What have you been doing all these years?”, 19-year old Dov said, “Listening.”

The Golden Hat: Talking Back to Autism is a book that I consider a conversation starter. If we have not been personally touched by a nonverbal child with autism, this book will serve as a great place to begin thinking and talking about it. And, it’s obviously fun to see some of your favorite celebs in personal moments (not airbrushed and perfectly coiffed).

Bravo to Kate Winslet for getting involved and trying to make a difference in the autism community, and kudos to Margret and Keli for serving as inspiration to other nonverbal autism families out there.

Disclaimer: Simon & Schuster, publisher of The Golden Hat, provided me with a copy of the book at no charge in exchange for my opinion and review.

Now, here’s where it gets exciting…

Since the copy I received will be donated to my nonprofit's lending library, Simon & Schuster agreed to send me another book to give away to one of my readers! Isn't that great?

You have an opportunity to win a copy of The Golden Hat! To enter, please follow the instructions below.   

a Rafflecopter giveaway

Autism epidemic, continued

Last week I told you how I felt about the new autism numbers per the CDC. In case you missed it, the prevalence of autism is now 1 in 88. My post prompted a rather lengthy comment from Heidi that I felt needed further discussion. I reached out to my blogger friend, Cari from Bubble Gum on My Shoe (an awesome gal who has done guest posts for me before – here and here), to help me field the questions that Heidi posed. Without skipping a beat, she got right to it and added some great value to the discussion. Unfortunately, my mind doesn’t work that fast and I needed a bit more time. I want to continue on what Heidi and Cari started, and weigh in with my own thoughts, too.

Well, what I didn’t realize is how much I would have to say about this! My post got to be out of control and way too long for any sane person to read. In an effort to save you from reading for over an hour, I broke up some of it into a separate post on Monday to coincide with World Autism Awareness Day.

So, now I’ll bring you back to the original comment that spurred this on and begin the discussion. Get ready....here we go!

Happy 2012!

It’s the beginning of a New Year! Last night I got to thinking about 2011 and how, once again, things didn’t turn out the way I expected. But you know what? I’m actually happy that my wishes didn’t all come true. Want to know why? Because for the umpteenth time, God has proven to me that His plan is better than mine. My year actually went better than I could have expected, and although it wasn’t without struggle, God always provided for our family.

My mother-in-law told me several years ago that there is no such thing as a coincidence. Instead, coincidence is actually a “God-incidence.” Those words rang true in my heart and have been a source of comfort to me ever since.   

One highlight of 2011 was starting this blog back in January. It seemed to be an inadvertent whim at the time. I certainly didn’t set out to be a mommy blogger. I didn’t plan to hurt my back and be bored silly because I couldn’t move. But, things happened. And, I’m here. And, you’re here. With me. And, that is truly awesome!

Blogging helped me rediscover my love for writing, which is something I had stuffed away for many years. It gave me the nerve to try writing an essay for inclusion in a book, and the publisher was crazy enough to include my essay in the book! Talk about a dream come true! I’m a bonafide author, of a sort…  

A blessing in disguise was the fact that I didn’t find a job. It didn’t seem very nice at the time and was a huge source of frustration! Despite some great experience and education, I was apparently unemployable. It was hard to deal with the fact that I didn’t even get a single interview despite extensive efforts to find work. That had never been a problem for me before. Ever. That was a tough pill to swallow.  

When we were first married, Titan and I agreed that if we were able to, it was important that I stay at home with our children until they were at least old enough to attend full-day school. As a result, I have been a stay-at-home mom since I had Monkey almost 9 years ago. In the summer of 2010, Titan and I made the decision to get serious about finding a bigger house and we began actively preparing our house to sell. We managed to find our dream home in the best school district in our area, so we had a goal to work toward.

The one thing standing in the way of our dream was that we couldn’t do it all on one income, and I would need to get a job to help pay for it. I was excited about the idea of returning to work. But, as you know, that didn’t pan out. In the meantime, our house continued to decline in value due to the crazy economy and we watched our equity quickly vanish. Now we are in the unfortunate position of not being able to sell without losing money. That’s not a good feeling, but we also know it is not uncommon right now. Remembering that God works in mysterious ways has enabled me to come to terms with the fact that my plan did not materialize in the way I thought it would, and it probably won’t for a very long time. 

Feeling the need to do something (beyond staying up late at night to write blog posts!), I decided to start a nonprofit organization for special needs families. I realized that I could do something I love, even if I was unpaid, and create my own dream job. Why not? I didn’t really have anything to lose! And, I would have never even tried something so crazy, had my plans not failed so miserably. 

You cannot even imagine the things that fell into place to get the ball rolling on the nonprofit! So many things happened in such a miraculous way that I know for certain that I am doing what I should be doing and it’s happening at the right time. And, I am excited to be a part of it. My hope is that one day I will get paid, but for now, I’m happy that I am at least able to tap into my passion for the special needs community and build something great.

God continues to provide and that’s all I can ask for. I believe that everything else will follow in God’s timing and I can’t wait to see what that will look like. Even if I rebel and feel disappointment that things aren’t always “going my way,” I know that in the end, lessons will be learned and blessings will flow from those difficult moments.

As long as I don’t force my own agenda and allow God to work, I know things will be better than I could have imagined. I learned this lesson when I met my incredible husband. Since I tend to be a Type-A control freak, this is a lesson that God continues to teach me all the time. Maybe one day I’ll get it through my thick skull and just make it easier on myself!

So, I intentionally choose to begin this year with a sense of peace and hopeful expectation that things will not go according to my plan and desire, but instead be true to the path that God has for me. I know there will be a lot of hard work and challenges ahead in 2012, but I truly cannot wait to see what blessings will pour forth.

Wishing you all the best for 2012,
Happy New Year!

-Angela       



Guest Post: flappiness is...

About 2 weeks ago I had the pleasure of reading a brilliant post by a new blogger I’d never seen before. I was so moved by what she wrote that I immediately scrambled to get in touch with her to beg her to allow me the opportunity to share those amazing words with you, my dear readers. Well, as you probably figured out, she said yes!  

I cannot even tell you how happy I am to have Leigh from flappiness is... with us today! She is a school media specialist and mother of a 4 year old neurotypical daughter and a 2 year old son who falls somewhere on the autism spectrum.

Leigh was kind enough to participate in an  impromptu interview, and I think you will agree, she has some great stuff to share.

After my interview with her, you will have the chance to read her post, “An Apology From Your Child’s Former Teacher.” In her post she describes being a teacher, who despite her best efforts just didn’t “get it” when it came to her special needs students. Now, as a parent of a special needs child, she finally understands. I guarantee your heart will be touched by her words.

Please be sure to catch up with Leigh on her Facebook page, Twitter, and her blog. You’ll be glad you did!

Introducing your child to their new teacher

It’s the most wonderful time of the year! It’s school time again! While I was prepping things last night for my boys’ first day of school, I was got to thinking about the process we go through each year to prepare the teachers for their arrival.

After my boys were diagnosed, I came up with the idea to write a letter introducing each of my boys to their teacher. I found that there was a lot I wanted to share with the teachers. But, downloading a whole bunch of information to them over the phone or in-person wasn’t necessarily the best approach because I couldn’t expect them to remember everything.  So, by placing the details in a letter, the teacher would have an individualized resource to refer to whenever needed. It was almost like giving them an answer key about my boys. Did you like that? Answer key. Teacher. Pretty slick, right? ;-) Moving on…

I’ve been writing introduction letters since 2008, and they average anywhere from 2-5 pages each. Each year I receive gratitude and many positive comments about the letters, since the teachers feel like they know and understand my kids before school even begins. Usually I write the letters during the summer and then email them or drop them off at the school several weeks in advance of the start of school. This way, the teacher will have them when they first start back to begin prepping their classrooms.

I thought that I would share the format of my letter with you. If you are not already doing something similar, this might give you the inspiration to try it for yourself. If writing a letter of introduction to a teacher is old hat to you, then great job! Read on, and maybe you can give me suggestions on how I can improve my format for next year. Here we go!  

Date

Dear Mr./Ms. Teacher:

I wanted to take this opportunity to give you some information about my child, _____, in preparation for him/her entering your class. You likely already know that he/she has an IEP. I would like to go a bit further than what you will find in the IEP, and provide you with a more in-depth perspective about my child so that you will understand him/her better.

First, my child is diagnosed with _____ and _____.

Give a brief description of their diagnosis (all of them, if there is more than one). Tell them what it means and how it affects your child. Be sure to include information about food allergies or other issues that are relevant and may need special attention.

Next, I would like to share some of his/her positive attributes and strengths.

It’s always good to start at the beginning with what your child has going for them. What makes them special and unique? List several things that are great about your child.

Now I would like to tell you about his/her favorite things, which are great motivators.

Try to list a few things your child responds positively to, like their favorite cartoon character, or their favorite toy, etc.     

In terms of academics, I would like to give you some information about his/her strengths and difficulties.

The IEP will probably go into this, but what do you see as the areas where your child excels? Areas of academic success can also be motivators. What are the things that your child struggles with in the classroom, or with homework?  

Next, I think it will be good for you to understand some of my child’s behaviors, triggers, and things we are working to improve.

Does your child have some odd, negative, or stimulatory behaviors? Share whatever you see at home that could also occur in the classroom. What things will trigger a meltdown? What are the things you are working on in private therapy?

I would now like to share with you some strategies and suggestions to deal with the previously listed behaviors and triggers.

What things work to help diffuse your child at home or therapy? Do you have a reward system? Do you use any calming techniques? What kinds of tools, words, or actions will help the teacher? Or, if you haven’t yet figured out what works, tell them what hasn’t worked so they know not to do those things.

In closing, I would like to thank you for reading this letter. I realize that I’ve given you a lot of information to digest about one child. I believe that your understanding of _____ through this letter and your upcoming experiences with him/her will serve to help him/her grow and better participate in your classroom. I fully expect him/her to have a marvelous year and to enjoy your class. Please do not hesitate to call or email me. I am including my contact information below. _____ and I are looking forward to a great year!   

Don’t forget to add in any other special requests or additional information that is relevant to your child’s success in the classroom.

Sincerely,

__________

Phone Numbers
Email

I realize that school has already started, but it is never too late to provide useful information about your child to their teacher. I think you will agree that it is a very good exercise to get into the habit of, and it will benefit both the teacher and your child. And, it will help you have less stress knowing  that you were proactive in getting the school year off to the right start.

For those of you who have written letters like this before, what things do you include that I didn’t touch on here? I’d love to hear your comments! Maybe you’ll inspire me to make some changes to my letter for next year!

Happy Back to School, everyone!

Have you entered the giveaway contest yet? Check it out here!