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!

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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’s difference while he’s happily playing 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… their was a time around our child’s three year mark that my husband, (I call him The Spouse when blogging), 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 pizza place, 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 all the time! I didn’t say it’s justified, just that human nature leaves most everyone to fall short in this dept. Admit it already. I have and I do and I know way too often I have to go back and replay why I did or didn’t judge something or someone…and how I truly should have looked at a situation.

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

None the less….

Many things have changed over the years for our son, many wonderful 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!  And 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.

Now, jumping back into a couple of weekends back 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 it’s self 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 taking to me about some new adventure game he was playing.  It also helped buy me some time after we were done with him in the fitting room because for the life of me I still like to have my kids in similar clothes ….on rare occasions such as family dinners or family pictures! So, I shopped for the TaterTot (as we loving call him when blogging!)

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, brave you say! 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, we’ll call her, in customer service was a breathe of fresh air, she called us right over and begin to help ring the return up and make the exchanges.

It was their that our Hero realized how important mom’s words of wisdom were from about 3 days back when he was reminded not to stay on the phone because my data was low at a doctor’s  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 t0 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 them 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 cant 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, 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 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 and 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 we were done finally.

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. Accommodation 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 accommodations 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 thank her in my mind now 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 were #1… in our eyes!

 

 

 

 

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“Friends”

Seems like when big questions come up for the Hero a visual helps him to process information.

Today when he told me that he was laughed at on the playground by his “friends” I had several visuals and analogies running through my mind about how to help him know and understand when kids are just laughing and when they may truly be laughing at him, but more importantly however, how he should handle himself.

One analogy about “friends” stuck with me all the way home and later on into the evening …it’s one I’ll share with him when he’s a bit older and can understand as this one comes with age  and mistakes too!

Friends are a lot like shoes. They fit into one of the three….

A) Some fit better with time and the longer they’re around you, the more comfortable you are.

B) The longer you have them, the more they start to stink!

And

C) You’ve thrown them out or they’ve been lost in the shuffle…. And, you miss them terribly.

Pick your shoes wisely! And should you step in poo with them, clean them up and keep walking!

One day this will prove to be a useful thought. I’m not sure how soon but I do know that shoes tend to fit the same with all of us on most levels and we all have had at least one pair that falls into the above mentioned.

Walk well with your shoes, my friends the road is long!

Different IS okay! (A letter to you about what I truly think is okay, and what’s not!)

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I see you looking puzzled at me now even over simple things that seem to confuse you greatly. You often look at me to give you the answer and even though you don’t say it, I know it’s because you’re unsure of if it’s okay or not and you struggle over the smallest things. I’d like to tell you tonight what I don’t always say in the moments as they are happening. I sit for hours sometimes and reflect on these things after you’ve drifted off to sleep and those moments have passed for you. But for me, I’m haunted by them to find better answers of how to help you during the waking hours.

I wish I could always tell you that everything you choose or don’t choose in life is “okay” but I know that’d be a lie and I choose not to lie to you, you’re 10 years old now and you deserve to know as much as you can process about the world around you! Here are a few pointers that come to mind with all that you are going through. I wont pretend to act like I’m going to tell you all of this tomorrow but I look at this as more of a reminder to me as things come up in the near future!

  1. School – it’s tough for you right now on many levels – it’s okay for you to be who you are. You are entitled to an education and your father and I are working very hard to help educate those that matter whom are in charge of that education. Though they do not fully understand your medical needs currently it is their job to work to get to know those needs and educate you through those struggles. I promise you kiddo, this is one area that your being different IS okay and I will stand for nothing less! You have been called “complicated” more times this year than I care to recall but then again, It keeps the fuel to the fire for me, and that’s all I need to be the best advocate for you that I can be!
  2. Your peers – this goes along with school and the fact in my mind is that “IF” your teachers are fully on board to support you, they will work to have your peers on board to support you as well! You have mentioned “bullies” often this school year and though I don’t take that lightly, I also know that your medical condition is currently overriding much of your social interactions with your peers, therefore I believe your thoughts on “bullies” may be a bit of an overreaction on your part. Don’t worry, this to will be addressed as it’s time for your peers and teachers to be equipped with some materials about your condition and I’ve purchased such literature for them to get to know more about it and I believe it will help! For now, with your peers, that too is okay!
  3. Your medical condition – well talking about it is where I’d like to use the word “bully!” It’s now been pushing you around like a boss for over 13 weeks and counting! This is tough my love because this right now IS NOT okay and there is nothing right now you can do about it, therefore bullying you, it is! Please understand I hear your every cry of concern to “make it stop!”, I do and it tells me that you have no control over your own body right now! I’m with you during every panic attack and I’m working through it with you! You did not ask to have this autoimmune disorder and it is NOT okay that we’ve been told by the treating physician that we should wait out the current treatment in “hopes” that something changes! Nope! Not on my watch…..I will not sit around and ‘watch paint dry’ in hopes something will change for you! We will seek better treatment options!
  4. Belief – (in what cant be seen!) This has to do with how you are treated with myself, your father and the rest of the world for that matter! We are a world of disbelievers, we are kiddo! I hate to tell you this now but if we are going to talk about things currently you must know we humans simply MUST see something to believe in it! It’s a wonder that Christianity has made it to 2015! I know you don’t have this problem buddy and it’s the rest of us that do, but it IS why we don’t always give you credit to your fears or worries right off the bat! We don’t see them like you do, so they must not exist! Hero, that IS NOT okay and I will go on record to say that I’m sorry to you for all the times I didn’t believe! I truly do now and I’m learning from my mistakes quickly!
  5. Your brother – he loves you regardless! Please know that he thinks you “hung the moon!” To him, your “difference” IS always going to be okay! Have you not noticed his bigger than life smile every time you play with him? It’s there Love, believe me I know!
  6. Love – You have recently had your first crush experience and oh boy how I’d like that to have waited a while but I was being very honest with you about telling you right now you’re too young! Don’t worry about this one so much right now, it will bid you troubles for years to come! AS for love ….it IS okay…. when you are old enough to drive a car, so don’t roll your eyes at me buddy!
  7. friendship – this is something you and I need to work on together. Friendship is a very important part of all human life! Friendship fills voids that otherwise would leave us empty inside. Friendship is another way to love someone, it IS okay and we will continue to foster new friendships together, I promise!
  8. Worry – Your larger than life worries right now are NOT okay! I will not rest until I exhaust everything I have to instill that calmness and allow you to enjoy life as you once did!

I know there are other areas to cover but for now I think we’ve talked enough. One final thought I’d like to add…..and that’s that being different IS okay, it is just not easy! Your dad and I know most of your world is not easy and nothing new you learn comes with ease but that IS okay too! You will never be compared to other standards of the world for each and every child learns at their own pace! We are simply proud for your every accomplishment, no matter how you finish in the race!

Love,

Your biggest fan!

Top 10 for the Hero that turned 10 this weekend!

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  1. You did your best this week at school, even though it’s been one of your hardest school years ever!
  2. You made your dad feel like a kid again and re-live a little bit of his childhood by begging for your pet dog to get to sleep by your bedside!
  3. You gave me the ultimate compliment this week when you told me “I like you being my mom!” simply because I was spending time playing an iPad game with you!
  4. You ALWAYS eat your vegetables ~ Please teach the Tatertot this quality! Heck, any normal eating pattern that does not involve tossing food over the high chair would be acceptable!
  5. While you may not put them away, you are excellent at taking your toys back to your room when your are done playing with them!
  6. Your request for this birthday was simple and to the point! I have learned to embrace that about you, what makes you happy ~ makes you happy!
  7. I heard you say “This is the best birthday ever!” at least a dozen times this weekend! (My added bonus ~ you now know what makes up a dozen ~ for I taught you that one recently myself when yucky word problems were involved!)
  8. You did not stick your fingers in the birthday cake AND you ate a piece too!
  9. You were so dedicated to the request for your dog to stay in your room at night that you offered your own birthday money towards her a doggie bed!
  10. Your heart is big and you showed love today! When your parents worried about so many “things” that just didn’t matter and details that would either come together or not …..you were just you! Same Hero as always and it proved to be one awesome birthday to remember!

Healing waters….here we come!

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It has been said that “Time heals all wounds”….This week we will choose some surf and turf and “time” will have to take a backseat as no one gets to sit still whenever there is a vacation to be had with our crew! Our family vacation at the beach should prove to be full of sand, water, more sand, a few crabs here and there…..oh and let’s not forget a ton of autism awareness! Here’s to good times to be had indeed!!!!

Autism: You suck eggs!

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…..I’ve been ready to post those exact words for days now, cause let’s face it sometimes even in our best efforts IT JUST DOES! Actually, my posting would have read something more like this…..

“Notes from the last few days of parent fails:

AUTISM: You suck eggs right now, you do! Tomorrow however and the next day too, we start all over! And alas, in 5 days thank you, Jesus, we go on a very long awaited family vacation that will help to make it better, it will!”

But then, ….I didn’t get the few extra minutes this morning to post that and I ended up dropping the Hero off at his 2 hour class and I went on with other business, (some norms like quick shopping for last minute school supplies), and then I met with one of the Hero’s summer therapist about his progress with her over the past 8 weeks. Upon leaving the building and getting in our car, it was then that I noticed a few moments later ….a mom with a different little hero. He had tears and screams and a red face all too familiar in the community we call ‘autism’! Then there was also a caring therapist by his side attempting to calm the worries of this little, super dude ….I felt the mom’s pain, instantly, and I wanted to go hug her after they were able to get him to walk inside. The mom, this superhuman mom, wiped the tears from her eyes and went running back to her car and left.

I know you, not your name or your family maybe but……I know …..your worries and your heart! Tonight, I will keep my thoughts on you and your little super dude when I say my own prayers, I will!

Everyone has a struggle, no one has it easy in this world! Y’all remember that!
This mom and her little hero was my own reminder!