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!

 

 

 

 

Advertisements

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

0123172343a

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!

Image

“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!

“First do no harm!”

IMG_20150429_114003

I have thoughts on my mind tonight that I’d rather not have! When you read where one caregiver is taking out their own frustrations onto the child to which has a disability it becomes amazing clear that the caregiver needs to take a step back and reanalyze their thoughts on their child! Yes, I know our roles as special needs parents can be cumbersome, I’ve been on the journey for 10 years now myself and life-altering it has been! However, as a special needs parent I can also say that to ‘grow in your knowledge’ as a parent/caregiver and learn the true depth of your child’s disability and what his/her needs are, should really become an overall “tone” that you carry.

My frustration starts from the moment it is clear that this caregiver throws their child’s “bad day/weekend” into a category of “not going to let him get away with it” type behavior! As if to make a point of saying that they believe the child is in total control of his/her actions! I will stop here and say on a side note that: having a disability can sometimes give a person the wrong idea, especially a young child, that they can get away many of life’s daily irritations JUST because they have a disability ….and their momma’s said so! Ha! I know all too well that mentality ….and I work feverishly to ensure that my little Hero does not try to play the disability card. I can think back to a recent time where my little angel was getting out of the car and bumped his foot and proclaimed “I need a wheelchair, I cannot walk!” Needless to say, we had a long talk about what it means when one “needs” a wheelchair.

Another thought on this topic is that when a child with a developmental disorder that’s characterized by impaired social interaction, verbal and non verbal communication and restricted and repetitive behaviors, is having a ‘bad day’ it is wise to seek out the “whys” and “what may be causing this behavior” questions rather than simply writing it off to bad behavior.Question things like: What changed today that made it hard for him/her? To assume that the child can control it and was just attempting to make the caregivers day difficult proves to be bigger ‘trouble a brewing’ down the road.

By far my biggest hurdle in accepting this person’s out of place comments is that it was done so ‘tongue and cheek’ as to amuse their audience. I totally understand the need to unwind after a difficult day of parenting but at the expense of your disabled child is not acceptable! Yes, I make reference to hardships and sometimes the oddities that come with raising a non typical child, but mostly to show the world around us that though our life is different, it is okay.

I remember the early days of not knowing our Hero’s needs. It had a lot to do with me just wanting things to get easier, I wanted my life to roll on by like everyone else’s around me! That made me mad quite frankly and I wanted a normal life, plain and simple. It was easy to get upset at the very situation that my son could not help. I had my share of those days, wanting “change” …..truth is, it was not him that needed it, it was me!

I always like that phrase “The most import days of your life are :the day you were born, and the day you find out why!” ~ Mark Twain. To me, the day I truly started to enjoy myself as a parent was not so much the day he was born, however, it was the day I quit trying to change him so much and I started to accept him instead. That was my “why” in life, it all started to make sense!

lastly, I don’t write about this frustration I saw from this fellow parent because I want to belittle them, instead I’d like to educate them as to how they are in this for the marathon, not the sprint! It takes time to raise a special needs child, you will learn this ….pace yourself. In the meantime, enjoy the ride and advocate for him ~ then you will know your “why!” I HOPE you find it for the both of you!

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

1

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!

Boo ….It’s what we got at the Zoo!

zoo

When people read my blog I’m always in hope that they will find a mostly cheery mom that’s ever in support of her children and family. Now, considering we are 1) a foster – to – adopt family as well as 2) a family with a special needs child ~ both neurologically and medically (now) … to say hard times doesn’t exist in our world would simply be a lie! But in truth, I’ve often found with most days that people just want to hear about either the big headlines that are “jaw droppers” or anything they can “like” and feel good about with little to no guilt! Don’t worry, I too share this same quality …..it’s simply called being a human! If we cannot reason with it, don’t quite understand it, can’t see it, or know how to fix it, we all tend to steer away from it, It’s just the way most of us are programmed to get through life! It is not a fault but rather just the way we “do business.” I know we all are living in a busy world for I am constantly reminded of how much of this fast paced life I miss whenever I step outside of my families little “pod” …or comfort of our house and I take my focus away from my own family! I often see what I’ve missed from having been away and I’m both taken back for the better and worse, equally. My family ~ which is a special needs and foster to adopt family, tends to step out into the world in a much slower paced fashion! Rarely does the Spouse nor myself grab the keys and head out with the kids without much time and planning of how to make it a success for all those involved! One of those times that I’d ask for a “redo” came this past weekend when our little family ventured out to one very popular attraction around these parts: Boo At The Zoo!

There is a new ruler in our house that goes by one word: PANDAS! So, I cannot tell of our “boo boo” trip to the Zoo without first explaining something that’s taken over our Hero and his world as he knows it! 12 weeks ago and just before an annual family beach trip our fun loving kiddo began to display signs that he was in some sort of distress. He began needing to wash his hands, repetitively, He also began needing things like band aids for “hurts” that didn’t exist, showing signs of fear and a lot of it had to do with germs, oddly. Now don’t get me wrong, I have a small (translation: large), following of people whom all know me as an extremist when it comes to keeping a clean house! I think somehow in past years it was secretly my Olympic sport of choice and in my mind I demanded my own ‘gold medal’ and stood for nothing less! Then, I grew a wild hair and our family became a foster family ….yeah, most all of my tendencies regarding our home got flushed down the toilet as the need for my middle aged butt to attempt to keep up with everything including our overzealous pets, the Hero, the Hero’s schedule, and foster children as well! For the first time in my 20 years of marriage I could truly say “I just let things go” in terms of the house, our car, etc! All this to say that the Hero had somehow fallen into some type of regressive state where his sensory issues were at an all time high, he had fears of germs that weren’t real, and then about a week into it something new happened and it was more worrisome that the rest, he began this combination of a vocal and motor tic that he said he couldn’t stop which scared the daylights out of us! He started using wording we’d never heard of and along with these 3 words: “energy, blast, attack!” he would “power up” anything or anyone that somehow he came in contact with that he thought might potentially cause him harm by invading germs! (Yes, you read that right!)  No one was exempt from his worry, not myself, the Tatertot, not even his beloved dog, Maggie! This was just before vacation mind you so the Spouse and I decided that our child simply needed a break and considering he has private therapy even in the summer months, he’s practically in school ~ year round! Vacation came and went with little change and mostly everyone in my family on board and agreeing that something was gravely wrong with our guy. So, our journey to get to the bottom of all this was about 9 weeks ago where after the Hero’s pediatrician was stumped over his condition it lead us to a combo of new doctors, and for the first time in the Hero’s life we sought psychiatric help. I remember feeling funny about even discussing the Hero’s symptoms over the phone to people that did not know us.

When we finally got the Hero in front of the Psychiatrist he began to explain that our guy was displaying symptoms of a rare autoimmune disorder called P.A.N.D.A.S ( PANDAS is short for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infection.) When a child has presenting symptoms such as the ones mentioned above blood work can be done to support the thought of the disorder. (Connor had a high strep/antibody count in his blood work.) The next step we were told is to rid the body of the strep or other bacterial infection in hopes that it will decrease the inflammation on the brain ~ oh yes ~ I should probably explain right about now how this dynamic disorder works!! So, hang on to your hats, but did you really know that bacterial infections can do more than just make your child sick for a few days? It’s true, on rare occasion an infection can attack good antibodies and travel into places they should not go, i.e., the brain, heart, etc! Once these “bad guy” antibodies pass the blood brain barrier, inflammation occurs in the area of the brain known as the basal ganglia. The basal ganglia is the area of our brains that controls such things as:

  • Movement
  • Cognitive Perception
  • Habit
  • Executive, “logic based” thinking
  • Emotions
  • Edocrine System

So, lastly there is treatment which oddly can be the final step in diagnosing P.A.N.D.A.S. because if your child reacts to the treatment than there is a very likely chance that they in fact do have this disorder. Treatment involves beginning a low dose, long term antibiotic to rid the child of the underlying infection, thus removing the inflammation on the brain which is thought to reduce or remove the symptoms the child is presenting. (Please note: this is most often a beginning treatment and much more invasive treatments can be done when antibiotics either don’t work to rid the infection or should your child get a reoccurrence of the infection that inflames the brain!)  Because of the acute onset of OCD an anxiety, medication is normally prescribed as well. We left the doctors office that very day with in fact a 6 week treatment plan of antibiotics and an Rx for an anxiety medication. We were told to start both immediately!

Where are we today you ask? Well, we are at week 12 of something I can truly say has changed our sweet, fun loving kiddo into a very worried, anxiety driven child who “looks” the part of a “normal” child from a distance but is anything but his “normal” at this point. His senses are always on overdrive, so the slightest smell could send him running the other direction, not to mention he is now very sensitive to light and sound! His motor/vocal tic to “energy/blast/attack” everything is still present and his ultimate worry over germs is that they may cause him harm and it is a daily challenge for him! None-the-less we are only on week 4 of his treatment and honestly having the patience for treatment to work when you cannot see how things look from the inside and you’re just watching and monitoring “behaviors” and “movements” is a lot like feeling like you’re on the wrong plan out of the country ~ with no way back home! We’ve in fact been warned by his doctors already that an autoimmune disorder like this can have permanent lasting damage, thus we may not see a full recovery.

Why do I share this with you now? And at the 12 week point? I do so because 1) Our family is on a mission of sorts. I do not share for pity or to see how many “likes” my blog can get either…. I share because we have a story, one about acceptance of things you cannot see and people whom are different. I recently put a cover picture on the blog page that read : “Different IS okay!!!!” Truth is that different IS okay indeed, but also that different is hard! People whom have something, anything different about them often struggle on some level. Could be academically, socially, emotionally, financially, ….could be all of the above! You get the picture! Also, I share now because 2) Our family seems to be more stable than we were a few weeks back and now is a good time to point out HOPE to you! I blog and share my family story with you because we will always have hope! It is our firm belief that in order to “not jump ship” on anything YOU MUST HAVE HOPE! The Spouse and I are always in planning mode, it’s a daily gig that keeps us in check and it proves we have hope, hope in the future!

So, Boo At The Zoo you ask? Yeah, that was a detour back into reality that our child is far from being in “remission” at this point! (Please note: even when we “just” had a child with Autism, we did not deal with a fearful, confused, child that had no ability to cope or reason with everyday life for fears of germs invading his body!) Long lines, more smells that one can count, over excitement even before we arrived …..all weighed in on him and by the end of the night, the Spouse was carrying his 92 pound screaming Ninja Turtle out of the Zoo with everyone stopped dead in their tracks in wonder of what had happened to him! Oh and of course I just had to run into one granny-type, (Grannilocks as I refer to her with her orange goldie locks wig on) , that I came in one of near educating her on what an “invisiable illiness” means when she starred at me as if my “coaching” of our child was not enough and I should remove him from her presence! (This was before his final meltdown that led to his escort out of the park by the Spouse.) I was on my best behavior and in an attempt to not shove heads under water…. (after all this was our “test” of how well our kiddo could do with no good catch all plan for the night!) Had the granny-type opened her mouth though, I promise there would have been a headline in black and white that read “Moma bear punches granny – goldielocks in the face in an attempt to create “autism and PANDAS awareness” at the Zoo.”

It was not just one part of the night that was hard either…. in line to ride the train our Hero’s intorlarce to wait was causing stress to those also waiting and because a cart full of toddlers was in front of us it made his worry like 1000 times worse as he felt the need to protect himself from their germs and his only way to “deal” was to “blast” them!!! (Yes, we stopped it before it even started but you can imagine our side stepping to get between the Hero and the snotty, sweet toddlers whom didn’t have a clue what a powerful “blast” this child could inflect!

Strangely the Zoo is not actually the biggest “Boo” we’ve faced! When dealing with everyday life right now it is a constiant battle of stepping in or backing off of who needs to know the challenges our child faces! Whether it be his family, school, neighborhood friends or GranniLocks herself, someone is on the bubble to be affected by our child right now! So please stop and think before you judge ANYONE about ANYTHING! If nothing else just remember this: It’s a golden rule thang!

“I’d like to teach the world to sing in perfect harmony”

Top 10 for the Hero that turned 10 this weekend!

wpid-wp-1442206050547.jpeg

  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!