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

Featured Image -- 185

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!

 

 

 

 

Stealing Moments

fb_img_1473826297483

2016 was about moments ….and how we went about capturing them.

Stealing moments with God. Asking through prayer for things wanted, not always needed. Mostly requested was hope, strength, healing, and closure.

God never turned me down, not once and I found His word through His book and exposure.

Stealing moments counting pills, recounting steps from lost ground. Recreating patterns, studing test results, looking for answers only to be found…. that the regiment was working and he was on the rebound!

Gaining structure, gaining calmness, gaining a smile once hidden by confusion. Beating the illness in those moments was no longer to be an illusion.

Stealing moments on courthouse steps with hugs and tears a flowing, while waiting on the ink to dry and finally, finally knowing!

Moments with an addition that was once thought not to happen as if to only to be a lie. Not true, nothing even close but by God’s grace he joined our family and forever more, we became a  party of …four!

Stealing moments in the sun, with just a hose pipe yet they had big fun. Stealing Moments sometimes staged not every moment was always free,  but those boys though they fussed and f0ught together they would be.

Moments making it “perfection” proved to tire my soul and mind, in those moments pouring an extra cup of coffee and attempting to not get too caught up in the daily grind.

Stealing moments with my better half oh how hard that was to do, just a few moments together getting out was almost more than we could do!

Our moments though short with a tiny outing here and there; proved that our love will last forever and never question the when’s and where’s.

Stealing moments getting ready for him to go, a toddler wont stay small for long and there were things he’d need to know!

Moments crying as he learned new names and faces and counted his very first ABC’s, not too long after that he was on to his 123’s.

Stealing moments when summer had passed with new settings, new teachers and so many new rules, our big kid stepped foot into something called the “middle school!”

Moments pacing, moments circling, moments talking about what “if’s” ….moments thinking to myself, “Is he about to fall straight off the cliff?”

Stealing moments as school became success and we found that middle school was no longer a four letter word but instead more of a common ground.

Moments where meetings came and passed and his anxiety seemed smaller, almost gone – at last!

Stealing moments as I watched from afar, the cute little girl you tagged as “it” almost as quickly as you jumped out of the car! Her grandmother was not happy and looked you up and down, when the little girl got scared of you, I saw that grandma frown.

Moments are sometimes hard ones, not always sure what to say. One thing I’ve become pretty good at however is educating those that seem dismayed! This grandmother was happy to know and so encouraging of her grand, our kids played to the end and almost completely hand in hand!

Stealing moments with good morning kisses, chocolate milk and oatmeal too when finally Santa came to visit we sat down to teach the children a thing or two.

Moments sharing the true reason for the season …on a level our boys could perhaps understand. We then shared a prayer together, holding on to each others hands.

Stealing moments at the end of this year is really all that mattered …no worries about the bills, the needed hair cuts or a house all torn and tattered!

If moments weren’t made …what would we do with our days and our nights? our years would go by and time would lead us to the light. Moments to count each one as THE best, love unconditionally and try to let go of all the rest!

Good Grief! Can grief be a good thing?

It’s been more than two weeks now since we received a call from our child’s out-of-state doctor, an immunologist whom specializes in medically complex cases. Two weeks since we’ve heard the news “Yes, the test results indicate that your son has an autoimmune disorder called PANDAS.” Two weeks since we’ve once again changed medication and added new ones… two weeks, but almost seven full months of fighting a battle with our child that no one could have prepared us for!

“Good Grief!”, I think to myself, “Where did more than half our year go?” “Where has all that time gone?” On the inside, it feels like we’ve missed out on several years because the everyday battles seemed to send us into survival mode and we’ve just completely lost track with the rest of the world; many days not even caring what was actually going on that we were missing. I hate to be that frank but it’s the honest truth and when you’ve come from our past to where we are now… well it’s a bit daunting. Okay, it’s a lot daunting and to make matters worse, we’ve also received test results in the mail this week from neurological testing that was done over five months ago. Again, I think to myself “Good grief, when will our child ever catch a break?” This news has left us sorting through four different neurological disorders and one rare autoimmune disorder that roughly only about a hundred or so doctors in the U.S. are trained to treat.

When our child was three years old we learned of his very first diagnosis which was Autism and I remember feeling both tremendous relief and grief simultaneously; grief because my worry and fears about how his Autism could affect his life negatively, and relief because we then had a name and knew what path to take for the best possible help in the areas he needed regarding therapies. Autism, though it was new words to utter and it worried me immensely, was well known at that time and treatment was readily available at our fingertips. As for these new diagnoses we’re sorting through, I only know one name for them :GRIEF!

To quote Webster’s:
Grief ~ emotional suffering one feels when something or someone the individual loves is taken away.

Yes, grief is sometimes necessary when tackling a difficult diagnosis, let alone five of them. Grief soon welled up inside me as I read through the neurological reports just like it did when speaking to the doctor on the phone about the most recent lab results. I have grieved over many things regarding our child. When you hear the words “We don’t know if neurologically we will get him back fully,” from two or three specialist whose supposed to “cure” your child, well grief sets in. It’s not meant to and you try to fight the feeling back, after all you think “I still have my child here with me!” but the grief is there.

You think about all the therapy that he’s gone through, and “for what” you think.

You think of how far he’s come in those years of therapy, years you have spent watching him slowly build himself upward, defying odds stacked ten foot tall against him! “Where is it now?”

You think about how you are starting over, depending on how he responds to medication and again with therapies. Yet how do you begin to correctly cover the right therapies when some of these diagnoses seem to overlap, and some it the specialist aren’t even sure how to treat them?

You think about how your child was once only neurologically affected with Autism but now you know it’s not just one neurologic issue but several instead. To add to that chaos, he is now battling an autoimmune disorder and you will have that to contend with as well…. because it affects every last one of the other disorders! It alone complicates everything.

Then, you look at his picture like the one above… and you calm yourself, and you start to look through internet sites for things you’re going to need help with and you make a NEW list of contacts that’s local or within reach of where you live. You talk with your child’s school and teachers and administrators and all of his team of doctors so much that you feel like you’re at your child’s school or doctor’s offices more than you’re at your own home, because you are. You are collecting information, reports, test results, you are building your child’s new portfolio; a portfolio with many new sections now. You contact friends who know ‘people’ and friends that can call in a favor or two for you because they know of someone who can help too. And then, you begin to move past that grief. That grief that’s haunted you for weeks and months has started to fade. You are a parent, it’s what you do! You are just like any other parent out there trying to provide the best care for their child. Your child has lots of needs, yes, but you begin to work your magical will for his needs to be met!

You see grief takes many forms and I’ve found that grief can be an important aspect of helping you to ‘move on’ and lace up your shoes again, and hit the pavement to find what it is that’s missing from your child’s needs!

There is grief and then there’s “good grief” ….it allows you to find strength again. It helps you to stack those steps back up under your feet that just knocked you to the ground when all those new scary fears came pounding through your door and into your once safe home!

Lastly, I find that a dose of “good grief” will eventually make way to what always preserves as the key ingredient in moving past difficult times and that one thing is HOPE. If you can find hope in a difficult situation, you can turn it around, you can move past it! Hope will not allow you to stay stagnant, if you can find hope you can find a way! It may not be the way you pictured but hope will not leave you stranded and if you recognize it, it can be your lifeline!

“Don’t let your hope float away from you, when it’s there you will know it and grief will be in your review mirror!” I tell myself that a lot these days and now I share it with you… do you see it, there in the distance? it is your life preserver …go grab your hope too!