iCan Bike!

Despite our best efforts, Aaron just couldn't ride a bike. Not on 2-wheels, not on training wheels, not at all. He couldn't balance and the smallest wiggle of his bike would send him into hysterics, refusing to continue. We were sure we'd be adding it to the list of things that are challenging for him and didn't have much hope of changing that.

Earlier this year I was perusing autism resources in the area and came across information on Autism Charlotte's page concerning a camp called "iCan Bike." I'll spare you the details but instead share two links and a photo. They say it all!

Autism Charlotte - iCan Bike Camp

iCan Shine - Find a Program

On His New Bike

I cannot recommend this program enough. If you have a child (or even an adult) who cannot ride a bike on 2-wheels, look this up! 5-days, 75 minutes a day, and by Thursday he was riding on two wheels! By Friday, he was on his new bike, riding 2-wheels, without a handle to assist. I've been difficult to impress lately when it comes to programs like this but this was an experience I will never forget!

The "R-Word"

It continues to amaze me how having a child diagnosed as being on the spectrum can change your point of view on just about everything.

When I was young, the word "retarded" was part of mine and my friends natural language. We didn't mean any harm; We were young and naive. Even as an adult I don't know that I truly understood just how offensive the word was. Of course I knew that describing someone with any form of mental challenge that way was offensive, but using it otherwise, not so much.

A b-rated movie director, Uwe Boll, recently posted a video ranting about the fact that no one was contributing to his Kickstarter campaign. In it, he used the word "retarded"a few times. Being that he was already depicting himself as a complete ass-hat, I didn't really react to it. He wasn't worthy of the small effort it takes for me to be offended, so I moved on.

Today I found that one of the media outlets I follow on YouTube had posted a video on the story. It depicted two of its female stars running around the office to collect money for a movie called "Retarded Wizards in the Forest" (the title Boll used in his video). As they did this and were turned down, they'd use the R-word to indicate their displeasure. I was, officially, offended.

I've tried in the hours since to remember that it's essentially a comedy routine. The company's channels have posted videos in the past discussing the offensive nature of the N-word so, I suppose it surprised me. 

No, it bugged me.

Just constant picking at my brain bugged me.

I'm not typically one of those people that feels the need to be politically correct. In fact it drives me nuts how hard society tries to be just that. But in this case, I was in fact, offended. 

I suppose this post is essentially to say that you need to consider your audience. I don't care what you say among your family and friends. Everyone is entitled to say and think what they want. But, when you are producing material for the masses, it makes sense to think about what you're putting out there before you click that upload button.

He's the Same Kid

Let's start with that which is top of mind for me right now; This is not a "passive aggressive" attempt at making my friends feel guilty. I am not writing this post in the hopes that I receive a sudden flurry of messages. There is no hidden agenda; No ulterior motive or undisclosed plan. The sole purpose of this post is to shine a light on one of the most common challenges the parent of an autistic child faces: isolation.

Good. Now that we've got that out of the way...

One of my biggest fears after Aaron's diagnosis was that people would treat him differently. I put a lot of thought into whether or not I should "announce" the outcome of his hospitalization in September as being the diagnosis of autism. I guess when I decided to share it with my circle of "friends" I expected nothing would change. Why should it? He's the same kid, he just has a different diagnosis to explain the "odd" behaviors he sometimes displays. It's not like the behaviors started overnight or he suddenly became "different." He was always different. So why would anything change?

Honestly it took a while for me to notice. I understood that my friends have other friends with whom they are much closer. I've always been a bit of a social misfit myself so it's nothing new to me. I also knew, obviously, that Aaron's friends have other friends. It'd be awfully unrealistic for me to think differently. But, as Connie Hammer shared on momeomagazine.com, "Immediately after receiving the diagnosis, parents are caught up in an emotional whirlwind of disappointment, denial, anger and grief as well as trying to identify how best to approach their child’s treatment. Many don’t notice at first, but looking back they find evidence of a gradual distancing and suddenly realize it’s cold and lonely!"

A few weeks ago it suddenly hit me. Nearly every play date, every opportunity Aaron had to hang out with his friends, was my doing. I was either inviting his friends to come play or, quite honestly, requesting an invitation for Aaron to come to them. Despite my position that nothing had changed, we were no longer on the receiving end of the invitations.

At first, I let myself get angry. I believed it was personal; After all, it wasn't just Aaron who was being isolated, it was me! Those pictures you posted of Johnny having an awesome time with his friends... that was supposed to be Johnny and Aaron! Those plans you made with Billy's mom to take a trip with the boys? Just a few months ago that trip was going to be with Aaron, not Billy! Those shots you posted of Bobby at Chris's birthday party? Why wasn't Aaron invited? He and Chris used to be friends!

Soon, situations like Brooke Price explains on EmaxHealth.com became a reality: "As the days go by [...] you notice/noticed how much it gets under your skin when a friend talks about how smart their child is, how easily things come to them." I found myself thinking bitter, horrible things whenever a friend would post up about their child's latest accomplishment. Report card days were some of the toughest, followed closely by things like the Cub Scout Blue & Gold or Graduation ceremonies.

Over the last week or so, Aaron has begun begging me to reach out to the parents of his "old" friends and I find myself making excuses for them; Or maybe better put, I've begun making up excuses for them. Sadly, I don't even get as far as picking up the phone to try.

I suppose I've come to realize that, while I'm sure it's not personal, it may be purposeful. Maybe these moms are worried that "something" will happen given what I've shared about some of Aaron's behaviors in the past. Or, maybe their kids don't feel comfortable and want to play with someone who isn't as different. It's only natural right? I mean, the biggest reason I haven't kept in touch with most of my friends over the years is because we grew apart. In Aaron's case, his "old" friends are maturing and growing in ways he's not. When they get together to play, he isn't at their level and they lose interest. Kids social circles are going to naturally be made up of those friends with whom they have the most in common. It's not their "fault" they no longer want to play with Aaron, it's just not fun for them anymore.

I've read a lot of articles on this subject today and they've helped me to realize that what we're going through is normal. Friends grow apart as their lives change and move in different directions. Instead of feeling abandoned by his "old" friends, I need to accept that as they've grown, so to have their interests. Meanwhile, Aaron is still, very much, the same kid.

35 Things Not to Say?

35 Things Not to Say to the Mother of a Child With Autism: My Thoughts

I was inspired to blog today after reading this post shared by one of the many Autism related pages I follow on Facebook. After reading through the list they shared I realized that I wasn't sure I agreed. Here are my thoughts on each of the dreaded 35. Share yours with me in the comments!

Original Post: 35 Things Not to Say to the Mother of a Child With Autism

1. There's a book out about how to cure your kid.
   If someone said this to me I'd reply with "Really? Show me!" There are many books out there on how to treat, handle or even "heal" autism but there is no cure. Yes, using these texts you can learn to reduce the "symptoms" of autism in your child but there is no cure all solution.
2. Oh, my kid does that.
   I feel like someone saying this is actually trying to make you feel better. Awareness and education are so important so this is a door opening for you to teach someone a little about what separates a child on the spectrum from a "neurologically normal" child.
3. All kids do that.
   The concept of extremes and lack of "gray areas" is something a parent without a child on the spectrum doesn't often understand. Do all kids argue when it's time to stop playing and eat dinner? Sure. Do all kids have a meltdown as a result that lasts 30 minutes and results in physical damage to property/persons? Pretty sure no.
4. He'll/she'll outgrow it.
   This isn't necessarily an uneducated thing to say. In many cases, children on the spectrum see their "symptoms" improve with age. It's not necessarily that they "outgrow" them however as much as it is them learning to recognize the symptoms and accept themselves.
5. But he seems so normal!
   I've actually gotten this one personally and I wasn't offended at all. Autism is labeled as an "invisible disability" for that reason.
6. I'm so sorry.
   While I understand that we don't want people's sympathy, what's so wrong with an apology from someone? This is a human way to show that you wish you could help or that you wish there was something you could do. A person who says this isn't pitying you, they are sorry that you, as a parent, are having to accept and subsequently deal with your child's diagnosis. They aren't implying that you should be depressed about it, just that they wish you didn't have to go through it.
7. That's such a trendy thing to have right now.
   I don't believe anyone in the right mind would say this about a child diagnosed with autism. This one would offend me but again, educate!
8. Have you tried spanking him?
   There is a common misconception that autistic children simply need more discipline. This person again, simply needs to be educated. They aren't meaning to offend; In their experience, spanking worked!
9. Are you worried about his future?
   This is a fantastic question to be asked as a parent. Please do ask me this. Let me share with you what I worry about, what I don't and why. Be a good listener and thanks for asking!
10. I can't believe you had more kids.
    Doesn't apply to me personally but let me tell you, the older Aaron gets the more I wish we had thought about having another child. I see how he interacts with children younger than him and despite his struggles, he knows exactly how to act. He won't share well with kids his age or older but with younger children he is amazing. He shows compassion and empathy and really loves to make a little one smile. Under different circumstances, his diagnoses would probably have inspired me to get pregnant again!
11. Special children are such a blessing, aren't they?
    What is so wrong with this? Yes... they are a blessing... like all children are!
12. Is he ignoring me?
    Again, if someone is asking a question, why not answer it? It's the people that avoid a child on the spectrum or look and point without asking that are the problem. Ask away!
13. Oooh, I just LOOOOVE special needs children.
    Fantastic! Despite what many parents of children on the spectrum have lead themselves to believe, we do have "exceptional children" (the new politically correct terminology). There is nothing wrong with that and simply using a term that used to be considered acceptable isn't reason enough to judge this person. You can't have it both ways. You can't take advantage of all the resources out there for our children but be offended when someone calls them "special." If you have a child on the spectrum and you don't in some way advertise they are autistic (either via say a ribbon on your car or by attending Autism Society events etc. etc.) then fine. But if someone has said this to you it is only going to be because they somehow know that your child is on the spectrum and sharing that is also sharing that they are different. Different. Not Less. Remember?
14. God wouldn't give you more than you can handle.
    This one invokes a loaded response from me but either way, I don't see how it could be offensive. It seems to me someone who believes in God would reply to this statement with "amen!" It's similar to the "I'm sorry" statement earlier; This person isn't trying to say anything but "God has your back."
15. Are you sure he's autistic?
    This is another chance to educate. In fact if a parent asked me this question I'd probably read into it to think that somewhere in the back of their mind, they are wondering, based on whatever they've seen/heard of Aaron, if their child is on the spectrum. As a population of parents we need to remember that a large chunk of our society only knows autism as "Rain Man."
16. Do you think he'll ever learn to drive?
    There is a wonderful man named Joel that works at my local Walmart. I have no idea what it is but he has difficulty speaking, a strange gate and obvious signs of some form of mental and physical disability. He is working every day I am there, pushing huge lines of carts through the parking lot and guess what? He drives to and from work every day, by himself. This question doesn't offend me. It makes me want to know more about why they are asking because, yet again, it's probably another chance to educate!
17. You just need to give him more social opportunities. Join more groups.
    I must be missing something as to why this is a thing not to say to an autism mom. It's true. Every child on the spectrum can benefit from socialization and opportunities to do the very same things that any other child would/could do. I would be more offended if someone said the opposite!
18. When I was a kid, we just weren't allowed to act that way. It wasn't an option.
    When we were kids, children who acted like many children on the spectrum do were put into group homes and given electroshock therapy in an attempt to cure whatever psychosis they had. Are you really implying we should take that step backwards to how things used to be?
19. He'll grow out of it and be the next Bill Gates.
    I look forward to it! Thank you for having such wonderful faith in my son's abilities and believing in his future! Seriously? How is this offensive. I mean we've already covered the "grow out of it" thing earlier so this is really just about saying he'll be the next Bill Gates. It's funny actually because just two days ago I was sitting with a mom who was observing Aaron and she asked if he has ever said what he wanted to do when he grows up. She had no idea he was autistic I'm fairly sure, she just had this look about her like she was genuinely curious. She went on to say she has a "sixth sense" about this kind of thing (good for her) and she thinks Aaron will be a lawyer when he grows up. When I told her he was autistic her response was, get this... "So?" 
20. But he's so happy!
    Yep he is! Thanks for noticing! (how is this offensive??)
21. Get him in early intervention, and he'll be fine.
    Studies have shown that early intervention can make a world of difference. Everyone's definition of "fine" is different but this person is at least somewhat educated!
22. What's wrong with him?
    An opportunity to educate? Yes please! Yes I understand the verbiage here can make someone's skin crawl but how we respond in these situations makes all the difference. This person is trying to learn more so don't let the words they use offend you. It's not like when you are sick at home and someone asks "what's wrong?" you are offended.
23. But he's so smart...
    Thank you for noticing! Yes, we think so too. He, like many kids on the spectrum, does very well in school too!
24. I would never be able to do what you do for your kids.
    Seriously? How is THIS offensive? This is a compliment! Thank you for recognizing the effort it takes to me the parent of a child on the spectrum!
25. God chose the parents well.
    See #14.
26. What is her savant skill?
    Another chance to educate! Awesome! Again, the greater population of human beings on this planet think "Rain Man" when they hear autism.
27. My kids tantrum [or whatever] all the time, too!
    <broken record> EDUCATE! I have been in this situation before and, as they say, the devil is in the details. All kids have tantrums. Share with this person what makes it different (or potentially open their eyes to the possibility that their child is on the spectrum too)!
28. Sometimes I think have autism, too!
    Again how is this offensive? Help this person find their way to resources on how to know for sure!
29. If I only gave her more vitamins, I could cure her.
    I get it. I really do. I get how we need to focus on acceptance and awareness and not on thinking we can cure autism. I get why some people have boycotted entire agencies over the idea of a "cure." But be honest with yourself... if you are the parent of a child on the spectrum and one day were told there was this one thing you could do and it would "cure" your child's autism... wouldn't you do it?? Sure in this case simply adding vitamins isn't enough but there have been plenty of studies done that show that certain vitamins can help to reduce symptoms. While I see how this could be offensive, take a deep breath and realize this is yet another uneducated person and a new chance to educate them.
30. Ugh, my toddler just will not SHUT UP! I'm about to go nuts with the incessant talking! -- said to mother of non-verbal child.
    Aaron is verbal so it's unfair for me to judge this statement but I will say this... if I can vent to another parent about how I wish XYZ would change with my child, just because mine is autistic doesn't mean another parent can't vent to me about their frustrations with their own child. Again we've come back to not having it both ways.
31. Everyone has something.
    Acceptance? Recognition that everyone is different? Understanding that we are each unique in our own ways? Seriously this is offensive??
32. Aren't you afraid?
    Terrified. Thank you so much for asking!
33. I didn't have kids because my brother/uncle/cousin has autism, and so I didn't want to risk it.
    Well, as there are studies that show genetic links with autism, I'd say someone making a conscious decision to not put themselves into the potentially stressful position of raising a child on the spectrum, obviously knowing themselves well enough to know it'd be too much for them, is a great thing!
34. But he's so beautiful and he looks so normal.
    See #5 - I think some of these were reworded and duplicated to make a more impactful "35 things" than say "20."
35. In the 80's it was dyslexia, in the '90s ADHD, and now it seems autism is the popular diagnosis.
    Educate educate educate! This person just needs help to understand that as research and tools improve, so too can the frequency of a diagnosis. It makes sense that each decade begins to see increases in certain diagnoses. It means we are making progress!

Look, I can see how someone who is easily offended would have a problem with some of these, I really do; But I believe we are creating a world where we are afraid to ask questions or say things we believe to be comforting by making lists like these. 

In short: Please do say any and all of these things to me! Open the door for me to potentially educate you on autism and help you to understand! Just say what is on your mind... let me share with you why you shouldn't be afraid of my child! We are parents of autistic children for god sake! We already live so many days on egg shells... why make things worse for ourselves by reading into every little thing people say? Generally, people have good intentions. If we can't see and accept that, how in the world are we going to teach our children to?

Sanity via Pinterest

I love Pinterest. I am a pinning fool! So, it only makes sense that it's been via Pinterest of late that I've found some wonderful, inspiring and motivating things related to Autism. It's been a slow few weeks for blogging so I figured why not share some of my favorite finds with you!

Your Child is Different

It's an amazing feeling to have, not just one good day with your child on the spectrum, but to have a string of them. For a few days you find yourself feeling almost normal. You stop walking on eggshells and feeling like everything you say needs to be carefully considered before it comes out of your mouth. You can breathe. You forget for a short time that your child is different... and then it happens; a meltdown. A big fat physically aggressive meltdown; and it's over something minor. It is in that moment that you are thrown back into reality and you remember, "Oh that's right, I have a child on the spectrum!"

Inevitably what follows is a bout of depression. You and your spouse remain nearly silent the rest of the evening. You go through the motions of your normal routine but in your own bubble of emotion. You sit down to eat that ice cream cone but barely taste it. You enjoy sips of wine but they might as well be water. Your child shows you affection, and takes in the joy of a video game he loves, but you aren't really watching. You're sort of staring through the television instead. He's moved on but you, not so much.

Then begins the blame game. It's gotta be your fault. Why else could he have had over a week of great days only to fall back into the pit of despair that seems to envelop him during a meltdown? You're PMSing. That's gotta be it. Your mood was mirrored in his. Or maybe you said something wrong or used the wrong inflection. It's gotta be something you did. Logic has left you at this point and you forget that your child is different... again. You forget that having a child on the spectrum means unpredictability. You forget that none of this is your fault.

You look at him, able to overcome the meltdown and move on with life as if it never happened, and you wonder how he does it. And then, you remember. You remember that he just had an incredible string of great days. You remember how good he did at school and how proud of him you were. You remember that the meltdown was one 15-minute moment amidst hours and hours of positive ones. You remember that it's not your fault and that from behind his eyes, you are the greatest mom in the world (despite what he may have said during the meltdown). You remember that your child is different, and your love for him has not changed. He is different, and he is your world.

I Am Grateful

"If you've met one person with autism, you've met one person with autism." It's a phrase most of us in the autism community are very familiar with; and it's an accurate one at that! While there are a few things that most people on the spectrum have in common (and thus it can be diagnosed), for the most part the way in which autism presents itself differs from person to person.

Over the last few months I've attended quite a few events put on by autism support organizations. During these events I've heard a lot about the different struggles that many autism parents have to deal with each day. Though Aaron's spectrum is quite challenging, there are many things I am grateful that we don't have difficulties with.

I am grateful that Aaron goes to bed at a consistent time each night, without issue, and stays asleep through the night.

I am grateful that he was potty trained by age 3.

I am grateful that Aaron is able to speak and generally communicate his wants and needs.

I am grateful that he loves affection, both giving and receiving it.

I am grateful that Aaron is able to attend public school with his peers (albeit in a specialized setting).

I am grateful that he can function in settings that many with sensory issues simply could not.

I am grateful that Aaron is typically open to trying new things.

I am grateful that he is eager to visit new places and ok with long trips to get to them.

The list truly could go on an on. Every moment that presents difficulties for us as a family comes with one that makes us realize that we truly are lucky. I try to remind myself of that each time we are in the throws of a meltdown or a tough day. It could be so much worse and, instead of focusing on how bad it can get, I am grateful to have a healthy, happy and engaged child.