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

“Autism now affects 1 in 68 children”

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

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

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

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

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

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

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

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

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


 

 

 

Advertisements

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

cropped-wpid-0701151027.jpg

 

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

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

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

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

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

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

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

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

 

When 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 while he’s happily playing his iPad games and clueless to what you may be saying to him, you will probably certainly notice at the point his ipad runs down or an even greater agitation when his beloved phone, (my phone), runs out of data! This in fact did happen to us one weekend recently while we were out shopping together.

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

Think I am kidding?

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

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

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

None the less….

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

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

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

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

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

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

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

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

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

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

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

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

 

 

 

 

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”

Oatmeal and Bakugans

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…

View original post 101 more words

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!

why write?

cropped-1.jpg

  1. because it helps.
  2. because he can’t.
  3. because he has something to tell the world.
  4. because I have something to tell the world.
  5. struggles are big, progress is bigger.
  6. help exist if you chose to seek it out!
  7. set backs happen, sometimes writing it down is key to “seeing” the truth about why it happened.
  8. others exist like our family, connections are important.
  9. advocacy and awareness.
  10. consulting the family dog is not good for the parent nor the dog!
  11. passes time late at night when one is up waiting to make sure he’s really “out” for the night.
  12. positives need to be shared in a world where special needs tend to mean “isolation, limited access and discouragement”
  13. to set the record straight!
  14. because if you understand him better, you are less likely to misinterpret what he does and why, hence you will likely explain that better to your child (ren) and in the end, they will be more accepting of “different!” Yes, it’s your acceptance I seek first because what you accept, your child will grow to accept!
  15. to quote the great one: “A person’s a person, no matter how small!” Dr. Seuss, of course!
  16. sometimes haircuts, apple pie, socks, singing, crayons and standing still are difficult ….I can now explain how.
  17. i’ve seen only oatmeal eaten for breakfast for 365 days x 8 years!
  18. i’ve seen a non verbal child find his voice!
  19. love can win, I see it daily!
  20. Because in the words of a favorite movie quote “hope floats!”