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

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

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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’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!

 

 

 

 

When your child is in a race that he never asked to run.

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I feel like I’ve done everything I can for tonight’s pregame event.

1) cleaned the house, okay I scrubbed every floor, washed every dish, dusted places that I had forgot existed.

2) lined up help for both the Tot and for Maggie dog.

3) put out reminders not to give him food or drink after midnight.

4) called the nurse so many times she’s now promised to come to Christmas at our house this year, no kidding!

5) avoided any word from the Hero of what was to happen in the morning time.

Even when he mentioned “vacation” tonight at dinner, I just let him ramble on about what all he wanted to do on this made up getaway he had planned in his mind already.

Don’t fault me, I’ve been down this road at least 2 dozen times in the past couple of years ….you just can’t calmly tell him “oh, you’re going in for surgery tomorrow, it’ll be fine love!” NO! You don’t, that news would be a lot for any child to accept ….then triple that by a child with autism and add in a PANDAS patient! Not happening!

I’ve gone over all the risks of surgery, like I said above, the nurse has actually had to listen to my countless questions until even SHE has called back to let me know she didn’t realize the surgeon did this or that for a PANDAS patient. The diagnosis still baffles many including the medical world!

I don’t really know what an athlete would do in the wee hours of the night before a big race but I can tell you what we have done to prepare for this event.

For two years now, more than 730 days we have walked a walk with our child that started with an illness. The illness, strep throat, began to minimic other cells …the healthy ones and because of an immune system gone array, an autoimmune reaction occured that allowed those cells to cross the blood brain barrier which caused the inflammation on our Hero’s brain. We have spent the last two years going from doctor to doctor, traveled and was treated out of state by a specialist, done at least 8 rounds of bloodwork to date, purchased enough medication to require a small mortgage loan, and treated with more supplements than I ever cared to know about!

During all this time, our guy went from a happy, social, fun loving kid whom just happen to have autism …into a child we no longer recognised. His entire being changed …he was but a former picture of himself. Nothing about his personality was the same, he was plagued with anxiety and would scream for bandaids or anything to help stop his obsessive compulsive thoughts! He began having panic attacks so badly that I didn’t want to take him anywhere for fear it would hit him while we were away from home. He had tics, both vocal and motor tics that did not exist prior to the PANDAS. Along with all of that his academic abilites regressed. He quit reading and could no longer spell or do math. Lastly, he had problems controling his bladder and he would wash his hands over and over again out of a fear of germs!

All of these symptoms got better while our Hero was on a long term antibiotic treatment. At nearing the one year mark we decided to ween him off and see if his body could then handle sickness.

His supplements, herbal treatments and new diet worked for nearly six months before he came into contact with a strep infection. Every symptom came back within just a few days of the illness. Like anyone who runs a marathon, you learn the tough hills and how to get over them! For us, we knew to go right back into an antibiotic treatment again.

After one month on his treatments we went to an ENT consult about the Hero’s perforated eardrum. We had put off the thought of a second surgery, (the first one having been nearly two years to the new consult), after the PANDAS diagnosis in large part due to the worry of any new bacteria being opened up into the blood stream. The Hero’s ENT whom had been his same surgeon for ear tubes years ago, took one look at his tonsils and described them as “chronic for bacteria!”

After leaving that appointment our guy ended up with yet another sickness that lasted for three weeks. It was then that we knew we could no longer hold out due to any risks involved, we scheduled the surgery for asap.

Tomorrow brings runners to their meets with marathons to run. It potentially brings him to the finish line of a marathon of which he never asked to run!

Our child, like many show up at marathons every day. They battle their way over hurdles seeking the finish line!
We as parents can tie their shoes, suit them up and drive them to the race but we cannot finish the race for them! We can only watch and be hopeful of what lies ahead!