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

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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!

 

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When is it time to let your special needs kid swim in the deep end of the pool?

As I drove back tonight from the second successful drop off of my church’s vacation bible school, I didn’t have thoughts about my days of vbs when I was a kid and how wonderful they were but instead my drive home was more like “Oh my word, my child was singing and dancing in the front of the entire VBS body…like 200 children and he was enjoying being in the mix!” What the crap?”

When I drove back to pick him up my heart was pounding with anticipation of how much he loved the second night!? He came bopping out to the car to tell me what cool things he did on night two! Was I dreaming, what happened to all the anxiety and OCD…oh yeah, and the autism? Where’d that go?

Each night was the same send off and pick up with success at the end of each evening. That may not sound like much to many that read this but it actually speaks volumes to me seeing our son able to participate in something as intense as VBS! It is huge when it comes to all the social interaction, singing and dancing , etc that our VBS entails. And to add to the fact that this child battles an illness based OCD that leaves him to need to wash his hands, touch something repeatedly, or just the opposite and avoid  being around people at given times…..

Well, he did it and still stayed the distance each and every night!

A year ago this child could not make it past day three – and he struggled even with his dad their to help.

So, it leaves the question to be answered: when do you push your nontypical , special needs child into the deep end of the pool? In our case, its a child with autism, as well as an anxiety/OCD disorder due to an autoimmune condition.

I mean, its not like you filled a pool with sharks and asked him to “jump in” or something! You’ll be their watching and ready to throw him a hand quickly, if need be. After all, you’ve been his lifeguard all his life, right?

So…why do we shy away from the thought of introducing them to the “new waters” of life?

Obviously, this answer could go a million ways depending on the child’s needs were talking of but …at the end of the day “we” the lifeguard parents we’ve become,  can’t stand the thought of letting them even dip their toe into the deep end! We just can’t bare the thought of anything going wrong for them, we can’t! And so, we often avoid the newness sometimes to try and help them avoid the pain, worry, frustration and fear.

And, not to mention… If  when we are finally at a good place in our child’s life, why on earth would we even CONSIDER unfamiliar waters? That’s crazy thinking, right?

Wrong! It’s really not crazy to think of the “what if he could really swim, and I’m holding him back?” Kind of thinking.

I had a friend of mine recently lend her own advise about her teen with special needs whom wanted to try a camp for the first time.  She said to me when I looked shocked that she would let him go, “if I don’t let him try, what does that say about my belief that he can do it?”

So, true! Now, I’m not saying drain the pool then dare your child to jump in it. Not at all, however, if started slowly with a few toes dipped and maybe a float that I’m holding on to …well, maybe….

And boom! That’s what happens to us -scared of deeper water – parents that are completely convinced that our children will need a life jacket, for life! And …sometimes that’s true. But sometimes not!

Sometimes, we helicopter parents need to take a big deep breath and step away from the wading pool and take a look at all the life guards swimming around our children. They’re all around them but sometimes I think, for our own fears and worry, we can’t see them! We parents tend to think our world is lonely with no help or understanding and I don’t think we always give credit to what is right in front of us.

My own fear of my child’s water crept up a couple of weeks ago ……. as I was explaining to you above, nothing could make me worry less about his leap into the deep end of the pool ..until I went to pick him up and I received the biggest smile from he and the children’s ministry director giving me two thumbs up!

See, they’re often many, many of these lifeguards around our children, I like to call them “stepping stones” because each one unselfishly allows our children to step over their path and help by giding these kids in the right direction. They’ve often their cheering from the deep end and giving any needed “swim lessons” we parents worry about!

I can’t say that raising a child or children with so many extra needs is ever an easy task. I can say, however, that I sure am glad to know there are those out their up on deck armed with the knowledge that our kids may need their help at any moment but also know when to back off and watch these kids dive right in with a perfect cannon ball!

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!

Stealing Moments

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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“Friends”

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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…

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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!

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!