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

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

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

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

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

Love,

Your biggest fan!

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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”