Why does my family work to promote World Autism Awareness Day?

“Autism now affects 1 in 68 children”

That’s why! Read it again if you need to, I’ll wait. The overwhelming fact is that autism is going nowhere fast! it’s here to stay and while we cant seem to figure out a definite cause for such a rampant diagnosis being handed out left and right to children all around us, I don’t care! That’s right! I don’t care at the end of the day, it does not change the fact that our children need treatment no matter the cause of why they have autism!

Another thing that keeps creeping up like a hungover drunk trying to get out of bed, is that “we” caregivers within the autism community cannot seem to agree on anything anymore and boy does it stink! What we call or how we address our loved ones with autism, their treatment, and the big one I come across like daily, “your child’s autism is not the same as my child, it’s not the same autism and so you don’t understand our struggle!” WHAT?

Okay, for starters autism community stop comparing one form of this diagnosis to another! For God’s sake, is part of the plight of us caregivers to not have a more understanding world for our children to live in? I just don’t get it anymore. My child may talk and yours may not. My child may stay in a self contained room or small group setting at school and yours may not. Guess what? They still have autism! I may say “this is my child, that has autism. You may say “my child has autism, this is him/her.” Guess what? Again, both of our children have the same diagnosis.

I may or may not do the exact treatment and or therapy plan as you do for your child’s autism needs and again, guess what? They both still need treatment for a diagnosis of autism!

I may chose to send my child to public school and you may chose to homeschool your child. Guess what? No change here either, both children STILL have a diagnosis of autism!

Why MUST we continue to be so divided in a community that needs to stand together, now more than ever?

I continue to want our children’s lives to change for the better but I don’t see how such an accomplishment can ever occur within a society that cannot seem to look past so much of the small things that at the end of the day just don’t matter.

I continue to support the cause of the greater good of all and I will use this month not to bicker about your child vs. mine but rather to promote the networking for much needed information and services that benefit our kids.

yes, we need awareness, and acceptance , and inclusion but we also need networking and community support of one another! How else are we, the caregivers to ask of the world around us if we don’t first support each other!Featured Image -- 185


 

 

 

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Why is it so odd to us parents when our kids do actually begin to “fit in” to the crowd?

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Every now and again I find myself scrolling over old photos on my computer and when I happen to spot one like this above, I always stop and stare for minutes at it and sometimes longer. I gaze at how perfectly “normal” it looks like. Like anyone I know could have this same picture of their child walking the dog on a beautiful day. I shocks me some days to be quite frank and that’s because my child has been anything but a typical child, and when I see for myself just how well adjusted he is slowly becoming, I cannot help but stare in amazement of it all.

Now, before you beat me up for insinuating that my child is not “normal” as if something is all wrong, save it! He is just how he’s suppose to be, he is not broken and I am in no way trying to come across that way. However, he has struggled his entire life and THAT is the abnormal part I reference. Many parents have gone bat shit crazy over another parent pointing out that a developmental delay , such as autism , should not make their child be considered “broken!” I assure you, I am in no way speaking in those terms here.

Tonight was certainly a night of unbelief right before my very eyes. Tonight was the first night for practice at our churches Upward Soccer league. I was, as usual, the parent on the phone weeks beforehand trying to get as much information as I could, trying to get to the person in charge, trying to feel them out on if they thought they were equipped to work with a special needs kiddo like mine. Tonight was no different, we got there early, scoped the place out for things that could quickly turn the night into a disaster. I could not find anything, not one thing that seemed to jump out at me and scream “red alert!” Not only that, my child did as the others did as soon as he got into to the gym. Kids were playing basketball, he played basketball. Kids lined up to meet their team mates, he lined up and met his team mates. They all headed to the field to practice, and we didn’t head to our car to take him home kicking and screaming ….We also headed to the field to practice! I played cool because I could truly only think to myself “it’s coming, get ready, things will fall apart on the field!”

To my uttermost surprise not only did he get on that field and practice, he stayed the entire distance, He ran, he kicked, he paired up with other players ….and from a distance off the field, there I stood actually talking to the director of our churches sports and recreation, like a parent without a care in the world, I too “fit in!” There was no running on the field trying to explain my child to another, no grabbing the ball and handing it back to another child that he had taken it from, not even a yell from across the field for my child to “STOP IT!” Nothing! Even my husband was mostly tied up with our four year old and trying to help him get in the fun of soccer, as it should have been, and not worrying or helicopter parenting the big kid!

By the end of the evening we were asking the big kids coach if she needed my husband to be an assistant coach for the team so that he could be more hands on with our child and she simply shrugged her shoulders like it was absolutely no worry!

So, why is it odd to us parents when our children begin to “fit in” with the crowd? I think maybe it’s because we have seen the struggle, we’ve been through every moment of the anxiety and worry of the most simplest of task that our children have done (unsuccessfully) 1000 times over in the past, and we’ve lived it with them minute by minute until we are as beaten down as they are to the point we wonder if they should ever …….(fill in the blank!)

It really should not take us as much by surprise when they do, in fact, begin to find there way and navigate through a new task or experience on their own and ….(here’s that word we long to use more often) ….successfully! But, it does truly hit us squarely in the face when it happens! We forget all those hours in a therapy of one sort or another, all those prayers that have been prayed, all those tests and scores that mean something to someone, somewhere.

Our children are more than that …they are who they are suppose to be …they are not broken, They have challenges and hurdles that sometimes feel like a mountain for such a small set of shoulders to carry, …but just remember, in their own time …they will move those mountains all on their own!

 

When is it time to let your special needs kid swim in the deep end of the pool?

As I drove back tonight from the second successful drop off of my church’s vacation bible school, I didn’t have thoughts about my days of vbs when I was a kid and how wonderful they were but instead my drive home was more like “Oh my word, my child was singing and dancing in the front of the entire VBS body…like 200 children and he was enjoying being in the mix!” What the crap?”

When I drove back to pick him up my heart was pounding with anticipation of how much he loved the second night!? He came bopping out to the car to tell me what cool things he did on night two! Was I dreaming, what happened to all the anxiety and OCD…oh yeah, and the autism? Where’d that go?

Each night was the same send off and pick up with success at the end of each evening. That may not sound like much to many that read this but it actually speaks volumes to me seeing our son able to participate in something as intense as VBS! It is huge when it comes to all the social interaction, singing and dancing , etc that our VBS entails. And to add to the fact that this child battles an illness based OCD that leaves him to need to wash his hands, touch something repeatedly, or just the opposite and avoid  being around people at given times…..

Well, he did it and still stayed the distance each and every night!

A year ago this child could not make it past day three – and he struggled even with his dad their to help.

So, it leaves the question to be answered: when do you push your nontypical , special needs child into the deep end of the pool? In our case, its a child with autism, as well as an anxiety/OCD disorder due to an autoimmune condition.

I mean, its not like you filled a pool with sharks and asked him to “jump in” or something! You’ll be their watching and ready to throw him a hand quickly, if need be. After all, you’ve been his lifeguard all his life, right?

So…why do we shy away from the thought of introducing them to the “new waters” of life?

Obviously, this answer could go a million ways depending on the child’s needs were talking of but …at the end of the day “we” the lifeguard parents we’ve become,  can’t stand the thought of letting them even dip their toe into the deep end! We just can’t bare the thought of anything going wrong for them, we can’t! And so, we often avoid the newness sometimes to try and help them avoid the pain, worry, frustration and fear.

And, not to mention… If  when we are finally at a good place in our child’s life, why on earth would we even CONSIDER unfamiliar waters? That’s crazy thinking, right?

Wrong! It’s really not crazy to think of the “what if he could really swim, and I’m holding him back?” Kind of thinking.

I had a friend of mine recently lend her own advise about her teen with special needs whom wanted to try a camp for the first time.  She said to me when I looked shocked that she would let him go, “if I don’t let him try, what does that say about my belief that he can do it?”

So, true! Now, I’m not saying drain the pool then dare your child to jump in it. Not at all, however, if started slowly with a few toes dipped and maybe a float that I’m holding on to …well, maybe….

And boom! That’s what happens to us -scared of deeper water – parents that are completely convinced that our children will need a life jacket, for life! And …sometimes that’s true. But sometimes not!

Sometimes, we helicopter parents need to take a big deep breath and step away from the wading pool and take a look at all the life guards swimming around our children. They’re all around them but sometimes I think, for our own fears and worry, we can’t see them! We parents tend to think our world is lonely with no help or understanding and I don’t think we always give credit to what is right in front of us.

My own fear of my child’s water crept up a couple of weeks ago ……. as I was explaining to you above, nothing could make me worry less about his leap into the deep end of the pool ..until I went to pick him up and I received the biggest smile from he and the children’s ministry director giving me two thumbs up!

See, they’re often many, many of these lifeguards around our children, I like to call them “stepping stones” because each one unselfishly allows our children to step over their path and help by giding these kids in the right direction. They’ve often their cheering from the deep end and giving any needed “swim lessons” we parents worry about!

I can’t say that raising a child or children with so many extra needs is ever an easy task. I can say, however, that I sure am glad to know there are those out their up on deck armed with the knowledge that our kids may need their help at any moment but also know when to back off and watch these kids dive right in with a perfect cannon ball!

When you hear the words “You handled this so well!” from a stranger in line

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So, it’s no secret that my family lives in a world where because we have a child with autism, we often find ourselves sharing Autism Awareness most everywhere we go! If you do not notice our Hero while he’s happily playing his iPad games and clueless to what you may be saying to him, you will probably certainly notice at the point his ipad runs down or an even greater agitation when his beloved phone, (my phone), runs out of data! This in fact did happen to us one weekend recently while we were out shopping together.

Our shopping trips consist of quickness and an urgency to move through any store or anything that resembles such a hideous place, as soon as possible! We often go in armed with enough electronic gadgets to ensure that the battlefield A.K.A. as a department store is left enacted and no undue harm is caused to others out enjoying their shopping pleasures.

Think I am kidding?

Well, let me say this before we go any further… there was a time around our child’s three year mark that my husband (The Spouse) took our child to merely pick up a pizza order. Upon arriving at the pizza joint, The Spouse realized that he’d have to wait with our then non verbal son, in a very busy and popular restaurant , and with nothing to entertain the tike except for a few arcade style games in the room beside the cashier. The Spouse got him set up in front of a game and things were going well, (as always …and even at three if our kiddo can find an electronic of any sort, he can drown out anything else around him!) Eventually our order was called and The Spouse explained to our Hero that they had to leave. The Hero was not ready to leave such electronic goodness and as if a vampire had overtaken our darling child, he locked into The Spouse with all the might he could find!! The Spouse found himself juggling not only the pizza but a three year old junior vampire as well! What happened next? The Spouse, whom truly has the patience of a saint, turned back and with his own set of choppers bit right back into the small fries hand!! Can you picture this yet? Are you in the seat next to this battle of “who bites harder daddy vs. son?”

Are you judging this seen yet? Did you tell your kids with a whisper :Don’t ever do that to me in public!” Did you instead offer to help perhaps?  It’s okay… we all do it. You cannot go out into this world without looking on others and making judgements of some sort. We all do it from time to time! I didn’t say it’s justified, just that human nature leaves most everyone to fall short in this department. I have and I do and…and, I know way too often have to go back and replay why I did/ didn’t judge something or someone…and how I truly should have looked at a situation before passing judgement.

It’s a hard lesson to realize we as people don’t always stand up to our own beliefs and break our own rules. It’s a life lesson that I believe often follows us from children throughout adulthood.

None the less….

Many things have changed over the years for our son, many wonderful and new things he now enjoys in a social atmosphere! He has truly come light years from his non verbal days but shopping, however, whether it be for him directly or anyone else on the planet is not one of those things he delights in!  Shopping is a very social activity, Think about how much of a social environment it can be, I mean not only are you around other people from store to store but you wait in lines at every store type you visit. You must talk to a clerk, sales person, etc.

Now, jumping back into a couple of weekends ago and my bright idea to take my almost-as-tall-as-I-am  11 year old clothing shopping because I can no longer guess his sizes. Yes, he had his iPad on the car ride over. Yes, he had my phone during the shopping part, but having those things helped accommodate his need to not pace, or worry about what others around him were doing. He was very calm while trying on clothes and comfortable talking to me about some new adventure game he was playing.  It also helped buy me some time after we were done in the fitting room because for the life of me…. I still like to have my kids in similar or matching clothes ….on rare occasions such as family dinners or family pictures! So, of course I shopped for the Tater Tot too!

With an arm full of clothes we march to the back of the store to find customer service, did I mention I had to exchange the Hero’s non fitting clothes too? I know what you’re thinking …”brave soul” or maybe “she was pushing it!”, or maybe “idiot!” (I assure you …all of the above are correct!) however, we had no line when we get to the back…I repeat, we had NO LINE!! It was like the best possible set up, right? Hmm. So “Sally” as we’ll call her, in customer service was a breathe of fresh air and she called us right over and begin to help ring the return up and make the exchanges promptly.

It was at this point the Hero realized how important mom’s words of wisdom were from about 3 days ago when he was reminded not to stay on the phone because my data was low … we were at a doctors appointment and the wait was making us both weary. (That extra long wait to see his doctor is for another story but you get the point!)

As my phone was no longer any good to him, he began to get frustrated and I told him about our plans to do something fun like go by the pet store next door when we were finished ….pet stores always makes my kiddos happy! With that thought lasting only a few seconds, he began to pace. He kept going back to the phone hoping it would work and then he would know what to do next. See, it’s when the phone went dead that he didn’t know what to do with himself. He can’t process short waits like most 11 year olds can and it didn’t help that Sally had just talked me into a store card because I would save X amount of money for getting a store card right then and there!!! (Disclaimer people: This is ALWAYS a lie, and we always fall for it too! If you take the store card, you always buy more than you intend to down the road! Don’t do it!!! Say No!! But, I didn’t because  I was so caught up in Sally swooning me that I let her open me a store account! What???

At this point our once NO LINES back- of- the- store- hideaway was now mounting with customers wanting to get to Sally, the only clerk running the customer service area. The Hero is now very vocal about being board, wanting to leave, wanting to lay on Sally’s table and even asking about what the brochures on the wall were for? He then walks up to a customer and says something …I still don’t know what it was but my response was ….”hey buddy she’s going to tell you to deal with it! Come back over here!” The two ladies in line cracked a half hearted smile.

At that point I began speaking to him softly and rubbing the side of his cheek slowly…. I told him that I knew he was frustrated with the phone not working and that it was just a game, not a big deal and that in a few, few minutes we would be done and on to the pet store. I then began talking to him about what I needed his help with in the pet store. He calmed for a minute and I had a chance to glace back at Sally, whom at this time was not sure what to make of my son!! She was panicked and starting to adlib her own “sorrys” to our Hero. She turned from a helpful store clerk to someone whom did not recognize why my child was acting as he was.

I often wait to throw the autism explanation convo on the table …it can help a situation but then sometimes it can make an already anxious person well, more anxious! Sally was just trying to do her job and at warp speed at that point and I’m pretty sure we left her desk with discounts she just needed us to have, but finally, we were done!

I could already smell the lovely odor of the pet store in my mind as we turned to exit when about that time a hand reaches out to touch my arm and when I turned back it was the second customer in line waiting on her turn for a very frazzled Sally to assist her. This lady was older and gray headed and before I could even look at her fully she said ” I think you handled that wonderfully!” My response …are you ready for this ….was a somewhat judging one (See, I told you we ALL judge people!) …I said “He has autism, he’s doing good today!” She said again softly, “I think you handled that wonderfully. I am a special needs bus driver and I think you did great!” I had nothing else to say but an honest “Thank YOU!” before I turned to catch up with the manchild whom had already headed to the exit doors.

You see …as a parent of a child whom is now a preteen with an “invisible disability” , you often assume that the rest of the world looks on to think your child is simply spoiled and even if you educate others it can be hard from them to fully understand how necessary it can be to accommodate certain needs such as the above. Accommodations are not always so obvious ….most people think of wheelchairs and seeing eye dogs for example. Those are very well known types of accommodations, not so much is an iPad and cell phone! But if you look at what an accommodation means you can then realize that it can be very different from person to person.

I didn’t know the second customer in line that day but she did know us, well she knew of our situation and why we needed the accommodation that we did not have at the end of our transaction.  And I think of her in my mind often to replay how she was our advocate that day, she was standing in the gap for my child! She acknowledged his need and stressed that we had worked through it and “wonderfully” as she had put it. All the others in line got a short lesson of what was really going on during their wait…because she was teaching them! And …I’m pretty sure she knew it too!

Thanks to customer #2… You will not be forgotten any time soon!