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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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!

Boo ….It’s what we got at the Zoo!

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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”

“Different, Not Less!” ~ T.G.” ~ The disadvantages of an invisible disability!

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So when looking into the eyes of my son who will turn 10 years old this fall most people at first glance would not give a second thought to him having a disability. He is able to walk on his own, he can see, (more or less), and does not need a device to get from place to place! I am thankful of this indeed, however, at times having an invisible disability can be hard for others to process just why he can be so “different, yet not less!” as Temple Grandin once said about the Autism community.  It is human nature to have the attitude of “what can he/she do for me?” All too often these attitudes come very early in life although most parents never want to admit that their children have inherited this family trait and will quickly try to “right” a situation when little Johnny or Sally shows disrespect at the public playground! The question we really should all ask ourselves is how do we perceive ourselves to our children in everyday life that tells them how we truly value others …..both different and alike!

The first few years of our superhero’s life were all about uncovering why he had behaviors that often forced us to leave public places to calm him, if not avoid them all altogether! His poor vision, social skills, lack of communication and often complete anger and confusion eventually lead us to a proper diagnosis and thankfully, by 3 years old, there was a name for all of his puzzling ways: Autism! I actually felt relief and so did my husband when we heard those words from the team that reported the diagnosis! It was then that we could start towards a beneficial road to getting Connor the much needed help and therapy that was out there and available!

By summer time after the winter diagnosis of Connor’s autism,  I had already quit my career and left it in the dust! My mission was set and I had no plans to look back ……and to be perfectly honest, our first encounter with our son’s school system was that there was much to be changed on how and what type of services were provided! It was clear that we would need to supplement a majority of the therapy he needed privately or fight the school right out of the gate on our first year with him as a preschooler? We instead hired an advocate whom already knew Connor and could speak openly at his IEP about his needs, (and she did just that!) The school met us half way, we were happy and we supplemented the rest privately both during the school year and in the summer months too!

Our routine has not changed much over the past 7 years except to say that Connor is pretty conditioned to being almost a year around student! He does get breaks during the summer but for every “Off” day he has a “school” day! The effort he has put into it has brought him light years from where he began …..at 4 years old he could not speak intelligible words! Now, he can speak with most skilled listeners understanding him about 80% of the time! Adults usually understand him more easily that his peers ….but it really ALL depends on IF the child wants to stop what they are doing long enough to TRY and understand what Connor is conveying to them!

Yes, it is true my child looks exactly like your child from head to toe but if I could just take you aside for a minute, you that mom or dad and say this: I need YOU to know these things that you and your child cannot see when looking at my child:

PDD-NOS (pervasive developmental disorder-not otherwise specified.) ~ Autism.

Ocular Motor Dysfunction ~ the absence or defect of controlled, voluntary, and purposeful eye movement. People with this condition have difficulty moving their eyes horizontally and moving them quickly.

Dyspraxia ~ A disorder that can affect planning of movements and co-ordination as a result of brain messages not being accurately transmitted to the body.

Sensory Processing Disorder ~   A condition in which the brain has trouble receiving and responding to information that comes in through the senses.

Auditory Processing Disorder ~ A variety of disorders that affect the way the brain processes auditory information. Individuals with APD usually have normal structure and function of the outer, middle and inner ear (peripheral hearing). However, they cannot process the information they hear in the same way as others do, which leads to difficulties in recognizing and interpreting sounds, especially the sounds composing speech.

Hypotonia ~ is a state of low muscle tone (the amount of tension or resistance to stretch in a muscle), often involving reduced muscle strength. Hypotonia is not a specific medical disorder, but a potential manifestation of many different diseases and disorders that affect motor nerve control by the brain or muscle strength.

These things ….I know you cannot see them but they exist in our world! Our superhero battles them each and every day and I admit I sometimes forget all these terms and what they all mean because like ,YOU, I cannot see them either! But he battles through his day with all these things working against him and guess what? He STILL wants very much to befriend your child! How wonderful is that? He still puts a smile on his face and even with all these worries and struggles working against him…. he STILL bebop’s right down the street on his “off” days in the summer time looking for your child to play with because to him ….your kid’s the “best” and he just wants to be like him!

So PLEASE this is in no way a mom’s cry for pity, not even an ounce of it, it’s a cry for respect! My kid’s a Superhero, just like your Superhero!