April....

It is kind of perfect that April is Autism Awareness Month because it is also the month of Calvary's birthday...it basically is a month for him :)
I feel somewhat passionate about Autism Awareness not because I am craving people to understand and accept my son (although that would be nice) but more so that people will understand what to look for in their own children so that they can have early intervention.
Knowing the signs, advocating for your child, and being educated on possible forms of treatment are cornerstones of helping your child with Autism have the most success possible.
I often wonder where we would be had my sister-in-law not walked this road with my niece or my child's caretaker not expressed her concerns or had I not listened to either....our road to treatment started before Calvary's third birthday.
God has perfectly created Calvary and my desire is not,and has never been, to "fix" him...Calvary sees the world in such a unique way and his faith is something of which I marvel...my desire is only to understand the world he experiences more fully so that he can enjoy it more fully as well.
The symptoms of being misunderstood have always been what has concerned me most: anxiety, irritability, and aggression.
The meltdowns are not fun. Neither is the rigidity or inability to understand waiting...but what broke my heart was knowing that my son couldn't express what he didn't understand. Sometimes because he didn't have the words to describe it, sometimes because he doesn't understand why would see things any differently, and sometimes because everything was just building and building until none of us could really pin point the trigger. All of this created fear. Fear that we wouldn't understand or that someone would expect him to hug them when he was super uncool with it or that he would have to introduce himself to someone. All of this fear and anxiety made him edgy and quick to fight. His poor body was almost constantly in fight or flight mode...he was so out of whack sensory wise that he was almost constantly on the breaking point of a meltdown.
Yet, now, through understanding why my child is different, helping to find what he needs, and fighting to have those needs met Calvary is a much, much happier child.
This is why Autism Awareness is important to me.
I cannot imagine Calvary going through his whole life feeling misunderstood. We all have moments of feeling misunderstood...those are frustrating moments...but to have one continuous line of that feeling would make any of us want to jump up and down or spin and spin until we could just drown it all out.
I also feel passionate about Awareness because how essential it is for a parent to know what their options are as far as treatment...our culture is drug happy. We want a quick fix and an easy fix. But we all know that quick fixes and easy fixes are not usually the best most lasting fixes. We can put as much tape on a leak as we want but eventually that hose is going to burst...
A year ago Calvary was diagnosed with Asperger's and a mood disorder-NOS.
At that point we were encouraged to try medication because Calvary's moods were so out of control.
We reluctantly agreed that medication was the path we needed to try. We were reluctant not because we didn't agree that medication could be needed but because it broke our hearts to realize that it was.
Although the initial effects were positive, we quickly realized that medication is not without costs. This is another reason I am a big advocate for Autism Awareness. Without being aware of other treatment options we would have been stuck in the vortex of man made pharmaceuticals...and while I am not against medication, in fact I am grateful for the gift of medication, I do believe that it should be used only as a last result.
We found an integrative doctor that combines holistic methods with western medicine (shouldn't all doctors be integrative!!?!!). She found that Calvary has a gluten intolerance as well as an iron store deficiency. Since Calvary, and Kyle, switched to a gluten free diet we have been able to go med free! Calvary's mood is much more stable now and he is far less anxious. He also demonstrates far less rigidity and OCD tendencies.
Awareness means so much more than just knowing that children or adults around you may be autistic. Awareness should lead to understanding. Understanding Calvary makes me a much more effective advocate for him because now I am not trying to fix him; I am trying to bridge the gap.
A year ago we had a therapist sit in a room with me and solemnly tell me that not only does my son have Aspergers but that he also had a mood disorder. She went on to sympathetically offer her support for the meltdowns that we were accustomed to navigating. Her tone, all though very gentle and supportive, left me feeling very hopeless. My faith was rocked and it took me quite a while to remember that God is in control. I stopped letting fear be my guide and started looking to God...
2 weeks ago Calvary's therapist sat in amazement of Calvary's progress.
I believe that choosing faith over fear and realizing that being aware of what Autism is and how it can be treated is a huge reason for how much he is thriving.
My prayer is that I will continue to grow and learn so that as his mother I can thrive as well. Autism Awareness should be so much more than just knowing statistics; it should be an ongoing process of education and acceptance.

acceptance versus awareness...

i have heard so much talk about the difference between asperger's awareness versus asperger's acceptance and the interesting point about both is that i believe i live in a continual state of trying to navigate being aware of calvary's aspieness and accepting calvary's aspieness. 
if it is difficult for me to tread these waters i can only imagine how difficult it is for someone who is not in the trenches daily to accept the actions of a person that are completely incongruent with what our standards are.  and while it causes me deep, deep stress to see the eyes of onlookers judging me or my child in the midst of a difficult moment, i understand.
we have made tremendous strides with calvary.  we have come so far from the days of almost continual meltdowns.  i have often compared my life then to a hostage situation.  i felt like i was constantly trying to talk him down and spare the hostages.  continual is no literary hyperbole either...it was very literally a continual state in our home. 
however, i know we are beyond blessed to be where we are now.  we are learning.  calvary is learning and trying and i think a huge part of his efforts are a result of seeing so many of the people he loves learn and try as well. 
afterall, a relationship is not one sided. 
i believe that the big difference between awareness and acceptance is how much work a person is willing to put in to understand another person. 
i am aware of so many things.  i am aware of polka music, deep sea fishing, bungee jumpers and millions of other things.  but i am not at a place where i care to understand polka music, the desire to deep see fish, or the psychology behind bungee jumping--perhaps there will be a day when i meet someone who plants some seed in me where my awareness grows into more of an acceptance...but, that day is not today.
this is how it is for calvary.  i don't expect everyone to have an acceptance for my son growling, covering his eyes, or throwing himself on the floor in the middle of a store or restaurant.  i would wish for it.  i pray for it for his sake (and to be honest, sometimes my own).  but the reality is that not everyone has been touched by autism. 
i feel sad for those people...because just how i am most likely missing out on the great joys of polka music, deep sea fishing, and bungee jumping because i am too scared or judgemental of its quirkiness...many, many people are missing out on the beauty of who my son is.

we have come so far...and by we i mean our family and friends...in trying to learn and understand calvary's differences. 
it has made all the difference in the world for him. 
now, instead of being forced to constantly bend to a world that he doesn't always understand there are moments where we are bending to try and understand his world. 
i cannot imagine what a relief that must be for him.  he is only a child.  he is a child that has spent a large chunk of his 6 years of life reacting to a world that he doesn't understand and being parented as if he does or should.  the other chunk of his life he has spent trying to LEARN a world that is foreign to him.  i can only imagine what a reprieve it is for his mind to have moments where someone understands...or at least tries. 

the interesting part for me is how much i am still learning about calvary.  the minute i think i am an expert on all things aspie...i realize that i do not have a clue. 
it still boggles my mind how difficult it is for calvary to navigate this world that he sees as so chaotic.  he does so well that i forget to prepare him for a meal at a friend's house or set the timer for his class....and then...well...then...i remember. 

but it is all a learning curve.  he will be learning his whole life.  there are times where i am tired.  i am tired of trying to figure out how to help him deal with anxiety, worry about a snacks that are gluten free, remember to clearly state my expectations for every.little.thing....but then i think...i bet he is tired too.  tired of trying to understand why no one else feels overwhelmed by all of the sensory input he receives at every.single.moment, tired of not being able to eat the cupcakes that are sitting on my oven, tired of not knowing how to talk to that kid at the park with whom he desperately wants to play....and i remember that awareness and acceptance are different things--one is a continuous dance between education and compassion and the other, while nice, doesn't require much effort at all. 

i am looking forward to where calvary will be 5 years from now...and i am interested in learning how God is going to use all of this character shaping in the lives of our family and friends throughout the rest of our lives...but mostly i am just grateful.  i am grateful for the blessing that he is.  i am grateful that God trusted me enough to be one of his parents.  i am grateful that my other children have learned so much and do not show any signs of resentment towards him and the attention he receives.  i am grateful for the resources that have been available and the friends i have made. 
he really is beautiful. 

Holidays and Asperger's

one of the groups for mother's with children with asd posted this letter a little while ago and i have thought about it several times since i first read it.  i have mostly thought about it because i have anticipated with nervousness all of the activities that the holidays bring and the behavior that often comes as a sidekick for my oldest son.  i have conflicting emotions about my expectations for calvary's behavior because part of me understands why things are difficult and the other part of me just wants him to behave...you know...to say please and thank you, to not growl and throw himself on the floor at the mere sight of his plate, or mostly just display "common courtesy" to those around.  but sometimes "common courtesy" is far from calvary's concept of common and far from what he is able to access in moments that are created by the excitement and newness of the holidays. 
this letter so perfectly puts into words the experience for calvary that i just thought i would share it here.  so much of calvary's success has been rooted in his work at understanding the world around him AND the people around him working to understand him. 
this letter is written and i am including it here with permission by Viki Gayhardt in the perspective of someone with asd.   her website
 

Dear Family and Friends:
I understand that we will be visiting each other for the holidays this year! Sometimes these visits can be very hard for me, but here is some information that might help our visit to be more successful. As you probably know, a hidden disability called autism, or what some people refer to as a Pervasive Developmental Disorder (PDD), challenges me. Autism/PDD is a neurodevelopment disorder, which makes it hard for me to understand the environment around me. I have barriers in my brain that you can’t see, but which make it difficult for me to adapt to my surroundings.
Thanksgiving and Christmas are two of the roughest holidays for me. With large crowds and holiday shopping, it can be very overwhelming, even a bit scary. When planning a party, remember that with my oversensitive hearing and eye sight, Christmas trees and holiday smells can cause me mild to severe pain or discomfort. If the noises are impossible to control, a personal stereo with headphones set to a safe level for children may help drown out background noise and ease my discomfort.
Sometimes I may seem rude and abrupt, but it is only because I have to try so hard to understand people and at the same time, make myself understood. People with autism have different abilities: some may not speak, some write beautiful poetry, others are whizzes in math (Albert Einstein was thought to be autistic), or they may have difficulty making friends. We are all different and need various degrees of support.
Sometimes when I am touched unexpectedly, it might feel painful and make me want to run away. I get easily frustrated, too. Being with lots of other people is like standing next to a moving freight train and trying to decide how and when to jump aboard. I feel frightened and confused a lot of the time. This is why I need to have things the same as much as possible. Once I learn how things happen, I can get by. But if something - anything - changes, then I have to relearn the situation all over again! It is very hard.
When you try to talk to me, I often can’t understand what you say because there are a lot of distractions. I have to concentrate very hard to hear and understand one thing at a time. You might think I am ignoring you — I am not. Rather, I am hearing everything and unsure of what is the most important thing to respond to.
Holidays are exceptionally hard because there are so many different people, places, and things going on that are out of my ordinary realm. This may be fun and adventurous for most people, but for me, it’s very hard work and can be extremely stressful. I often have to get away from all the commotion to calm down. It would be great if you had a private place set up to where I could retreat.
If I cannot sit at the meal table, do not think I am misbehaving or that my parents have no control over me. Sitting in one place for even five minutes is often impossible for me. I feel so antsy and overwhelmed by all the smells, sounds, and people — I just have to get up and move about. Please don’t hold up your meal for me — go on without me, and my parents will handle the situation the best way they know how.

Eating in general is hard for me. If you understand that autism is a sensory processing disorder, it’s no wonder eating is a problem! Think of all the senses involved with eating AND all the complicated mechanics that are involved. Chewing and swallowing is something that a lot of people with autism have trouble with. I am not being picky — I literally cannot eat certain foods since my sensory system and/or oral motor coordination is impaired.
Don’t be disappointed if Mom hasn’t dressed me in starch and bows. It’s because she knows how much stiff and frilly clothes can drive me buggy! I have to feel comfortable in my clothes or I will just be miserable.
When I go to someone else’s house, I may appear bossy and controlling. In a sense, I am being controlling, because that is how I try to fit into the world around me (which is so hard to figure out!) Things have to be done in a way I am familiar with or else I might get confused and frustrated. It doesn’t mean you have to change the way you are doing things — just please be patient with me and understanding of how I have to cope. Mom and Dad have no control over how my autism makes me feel inside.
People with autism often have little things that they do to help themselves feel more comfortable. The grown-ups call it “self-regulation,” or “stimming.’ I might rock, hum, flick my fingers, or any number of different things. I am not trying to be disruptive or weird. I am doing what I have to do for my brain to adapt to your world. Sometimes I cannot stop myself from talking, singing, or doing an activity I enjoy. The grown-ups call this “perseverating” which is similar to self-regulation or stimming. I do this only because I have found something to occupy myself that makes me feel comfortable. Perseverative behaviors are good to a certain degree because they help me calm down.
Please be respectful to my Mom and Dad if they let me “stim” for a while, as they know me best and what helps to calm me. Remember that my Mom and Dad have to watch me much more closely than the average child. This is for my own safety and to protect your home and possessions. It hurts my parents’ feelings to be criticized for being over-protective or condemned for not watching me closely enough. They are human and have been given an assignment intended for saints. My parents are good people and need your support.
During the holidays, the average household is turned into a busy, frantic, festive place. Remember that this may be fun for you, but it’s very hard work for me to conform. If I fall apart or act out in a way that you consider socially inappropriate, please remember that I don’t possess the neurological system that is required to follow some social rules. I am a unique person — an interesting person. I will find my place at this celebration that is comfortable for us all, as long as you’ll try to view the world through my eyes!
written by Viki Gayhardt — singer, songwriter, and parent of two children with autism

teaching moments with calvary...

over the past week i have been trying to be diligent about taking pictures and making tangible notes about the interesting moments i have with calvary as his teacher.  these moments are easy for me to forget because we move in and out of them with fluidity but yet they are all so profoundly part of what makes calvary so uniquely calvary...i always go back to that egg reading a book because all of our moments with calvary are similar to that one.  we see the world one way and he sees it another.  once he lets me in on how he sees the world, it makes perfect sense...and i can see it...but i would have never thought it before his explanation.  that being said, i kept forgetting the funny moments we were having so i decided that i would try and remember to make a note and go back and take a picture of the moment so that i could tell kyle.

 

so this week we were reading a little story about the seasons creatively titled "Seasons"...i cannot remember who wrote the short story but i will try and go back and include that information later. anyway, we were breezing through the narrative and calvary came to this page:

 

 

 

once he got to this page he just started laughing.  i asked him what was so funny and he responded, "'animals will look for spring'", more laughter, "you can't just find spring!".  oh calvary...it is so interesting to me how deep "literal" thinking stems.  most of the time i think of it in terms of idioms and sarcasm but even this little phrase is a hiccup for calvary.  i had to explain to him that the author meant that the animals will start looking for the signs of spring...not actually spring all bundled up in a package hidden under a pile of snow.  he knew that was a silly idea, but he also thought that is what the author meant.  we had a little laugh thinking about silly animals looking for spring. 

 

 

this next picture still blows my mind because it both amazes me of calvary's attention to detail and it illustrates perfectly how rigid he can be in his thoughts.  i handed him his math work book and told him that he needed to do a few problems and this is one of the problems he was asked to solve:

 

 

he took one look at the problem and said, "i can't do that problem."  i assured him that it was well within his realm of capability and i read the problem to him.  after i finished reading, he looked at me and said, "i can't do this problem because angelfish would never be in a tank with goldfish.  goldfish can't live in saltwater."  well then.  of course.  i am sure that the writers of the first grade curriculum intended for the 6 year olds to catch on to that and answer that the question was invalid.  he kept telling me that "0 goldfish would be in the tank" and i kept assuring him that he just needed to pretend like they could be.  eventually, as is obvious by the completed work, he did actually do the problem. 

 

 

this next one is a little more common for us and a little harder to follow.  but yesterday we were reading in his science book about bamboo.  calvary really likes science and he loves "real photographs" and this selection was particularly interesting to him.  we read through the whole selection and when we got to the caption that reads "some bamboo plants can grow taller than a giraffe" calvary just looked at the two pictures in amazement.  and then he said, "in the dr. seuss foot book it says, '24 feet' but this picture says 25 feet"...

it took me a few minutes to realize how his brain was connecting because seriously, i cannot remember the last time i read the dr. seuss foot book.  but once i realize that the caption sparked his memory to that book i went off to find the book and see what he was talking about. i eventually found the book buried beneath a pile of books in his room (who knows how long ago he last read the book himself) and there it was...

 

 

this picture of some seussian drawing with 24 feet...

 

 

it may not be interesting to other people but my brain doesn't connect like that...across time and subject...but all the information in his brain is just sitting there.  ready to be accessed at any given point.  i find myself awestruck by how remarkable his memory is and also how concrete his language is.  for me, abstraction is a part of life.  i have been trained to analyze meaning and possible meaning in language to the point where i rarely see anything as literal.  yet, calvary has a difficult time seeing anything beyond what is there.  we read a story about a hat the other day.  all these animals were trying to wear the hat and it was either too big or too small for everyone except for the last animal.  on the last page all the animals were dancing and cheering and the mouse was wearing the hat.  i asked calvary all the questions where the answer was written directly in the text and he had no problem answering.  the last question was, "why are the animals happy on the last page" to which he responded, "how do i know why they're happy!?!?!". and then he threw the book and hid under the desk.  he couldn't connect the dancing animals to being happy about the hat fitting the mouse.  yet, he connect the phrase 24 feet and 25 feet across two unrelated books, two unrelated subjects, and two completely unrelated times.  it boggles my mind. 

 

what a gift it is to have a refreshingly new way of seeing the world.  it is not always easy for him as evidenced by his frustration with questions that ask him to infer details about emotion. it is not always easy for me because i know that language and learning only gets more and more abstract the older that he gets and it is my job to help him prepare for that transition.  but, it is a gift.  5 out of the 6 people in this house see the pictures and the question the same way...and he offers a different perspective and it is like scales fall from our eyes and we are able to see the world as a new and different place.  hopefully, i can be successful in helping him also see the world the way that others see it so that he too can appreciate a different perspective...

"high functioning"...

this term is really a wolf parading in sheep's clothing...(this is actually a phrase calvary would have an incredibly difficult time processing and understanding)...but the image actually works here. 
i have been processing my emotions towards all things autism for quite sometime now but this issue of "high functioning" is one that seems to perplex me the most.
i mean, shouldn't it be a good thing that calvary is referred to as "high functioning" to outsiders and casual passer-bys?
i think so.
but why, then, does it bother me? 
i clearly do not want my child to be viewed as having certain limitations.  i want the best for him.  i want a perfectly "typical" life for him. 
but...it really, really, really hits a nerve every time i hear:

"well, he must be very high functioning."
"i would have never guessed..."
"he seems perfectly normal to me..."

i know that everyone that says these things are well meaning.  i know that they are simply stating what they believe that i want to hear. 
but i don't know how to respond...

should i say, "thank you?"
because to me, saying thank you, implies that i would somehow not be pleased if he didn't appear to be "normal".
i don't want calvary to overhear me say thank you and believe then that i wish that he was anything other than what he is. 
when someone says that he doesn't seem autistic and they mean it as a compliment underhandedly insults him as someone who is actually indeed autistic. 

i have worked very hard to help ensure that calvary never sees his autism as a handicap.  i want for him to know that he is awesome. but all of that is undermined when the ability to appear normal is what is his greatest autistic feat. 

the truth is calvary is not normal.
he is smarter than average.
he is more detailed than average.
he has an ability to do things on computer games and video games that most adults cannot.
he sees patterns and puzzles in everything.

i don't want to take that away from him. 
and even though there are some awesomely non-normal things about calvary there are some horribly non-normal things about him as well...
and if i was to be honest, it irks me when that is not recognized as well.
parenting calvary is tough.  it is harder than parenting all three of our other children all together.  it takes more emotionally and financially.  and although he may pass for a typical child there are battles that we have fought that most people have not. 

it somehow takes something away from me when someone looks at me as if we have made a mistake or the doctors (multiple) have made a mistake in the diagnosis.  all of the battles...all of the meltdowns...all of the anxiety (his and ours)...all of the social struggles...all of the moments where communication is completely lost...all of these moments are lost and erased the moment someone looks at me like we are wrong. 

we've worked hard at making social outings successful.  we have worked hard at helping calvary deal with his anxiety.  and even harder at helping him deal with aggression and irritability. 
so, it is a wolf in sheep's clothing to hear that calvary is surprisingly autistic at moments because of course i want for his social outings to be seamless.  but my goal is never to help him "appear normal" as if that is the statue of our limitation...

i am not even sure that this makes sense now that it is written down.  i was hoping that i could make something coherent out of my inner turmoil with the term if i started writing but i am not sure i accomplished that.  but its out at least...right?
sigh. 

homeschool and aspergers's

i can hardly call myself an expert on the subject of asperger's or homeschooling seeing how i am new to both.  calvary's diagnosis was only just "official" earlier this year (although we have suspected it for much longer) and monday is our first day of homeschooling.  that being said, having a child that has an ASD makes parenting atypical...but when you are parenting an atypical child in the midst of typical children it can feel like burning a candle by two ends. 

i knew homeschooling was going to be a challenge for me as an individual because i am not very organized and high pressure/high "to-do"s make me incredibly stressed.   but it is a challenge that i feel up to and it is a challenge that i feel will strengthen me both as an individual and as a mother...if i don't quit...which may or may not have already crossed my mind.  but in addition to being a challenge for me, i knew that it would stretch all of my children.  of course harper was thrilled with the concept and couldn't wait to turn our home into her schoolhouse.  i worried about her leaving her friends and her incredibly adoring fans (teachers and staff) at her school because i need her to feel like the amazing girl that she is...and sometimes i have to be the bad guy and bring her back down to size...i guess i will just have to tell her how wonderful she is an additonal 50 times a day to make sure she continues her development of that incredible self-image. 

truth be told, harper isn't really with whom i was concerned.  of course i have had countless conversations with her about her concerns or fears.  we have tried to make special efforts to preserve her friendship with her best friend from school.  but harper is fearless.  as long as she can home at night she is ready to conquer the world by day (she has even been known to leave home for a few days too)...

calvary on the other hand is the one that i knew that would need extra precautions. so i designed our entire homeschooling experience with his needs in mind.  thankfully, most kids also thrive in this kind of environment so i knew that it would be conducive for all of my children...but calvary NEEDS these provisions in order for there to be much chance at all for success in homeschooling. 

1. we made designated areas for every activity.  there is a cozy "nest" area for reading, a computer room, and a place for seat work

finley modeling the "nest"

2.  i knew that calvary would need a quiet place to "escape" to when he needed to focus on his work.  he is becoming more aware of his super senses and sometimes has a difficult time processing his own thoughts when everyone is around...so we moved the computer into a separate room in hopes to give him a little more peace while he works on the computer. 

the computer in the "ish" room--meaning that it is not quite designated for any one purpose.

3.  i made several busy bags with sensory input in mind.  i have lacing boards to help develop those motor skills, button threading, marble sorting...lots and lots of activities for hands-on-energy-focusing time. 

drawer full of fun...puzzles, busy bags, memory games

4. calvary his own designated place for seat work.  this will not change.  his area will remain his area and the other kids will not be allowed to invade this "safe place".  it is important that calvary knows what to expect, where to be, and where to find things.  every thing has a place and a time.  this will help him maintain his sense of order when everything inside his head sometimes feels so chaotic. 

calvary land...we have one everywhere...the car, his room, and now the homeschooling room. 

5. again, lots of sensory input for supplies.  play-d'oh was his outlet in kindergarten.  whenever mrs. thomas noticed that calvary was having a difficult time she would allow him to disconnect and go to play-d'oh for some relaxation.  i am not even sure she knew what a great service she was doing for his internal processing but her instincts where amazing.  i wish i could bring her home with me :).  we also have finger paints, pipe cleaners, glitter and tons of other fun messy, sensory delights. 

6.  we are also working on a sensory table so that we can have a place to work with water, lima beans, and sand.  i almost cringe just thinking of the messes i will be cleaning up because of that one. 

7.   certainly by far the most mind consuming for me has been social interaction....with children with asperger's social training is not something with which to be taken lightly.  i have even noticed this summer has been a difficult time with calvary for proper peer relations.  he has started, as to be expected, to gravitate towards younger children.  whenever we play with peers he has a very difficult time cooperating with play, bending to others needs, understanding how to be part of group, and proper conflict resolution.  my challenge is to find balance so that he has enough opportunities to practice social graces without it becoming overwhelming.  kyle, calvary's therapist, and i all agree that 7 hours a day 5 times a week is a bit excessive for exercising a weakness.  all this being said, we are juggling two possible options for extra curricular individualized team sports...one of which is swimming and the other is tae kwon do.  swimming is our first option and he goes to a 2 week trial session next week and harper is going to go with him.  if he doesn't like swimming (or more importantly, if we cannot afford it) then he will go for tae kwon do. 

8. chewy tubes so that he will not chew his fingers raw.  between his need for sensory input, his perfection seeking attitude, and anxiety his fingers (and toes...ewww) have taken quite a punishing this past year.  hopefully, something like this will help. 

 

so, i am sure we are missing loads of points that need to be addressed...but we are going to take this one day at a time. even though the stress is a pretty intense fog through which to see...one thing i know for sure, i am going to love having harper and calvary home all year and i am going to try and revel in the gift in which i have been given

this blog is written in participation with kate krull's blog party with this week's theme being about kids with special needs and school.  feel free to join! 

waterlogged...

i like this picture because of calvary in the background...see him?  right there just over harper's shoulder.  floating, arms by his side, head back...complete surrender to the water.  this was hour 4 in the pool that day, and he still did not want to leave.  my dad was right; i need to buy that boy a pool. 

and it seems that i am not the only mother of an autistic spectrum child that has had similar experiences with a pool...the benefits of swimming lays out some of the more obvious pros and cons of the pool...and i will say that most of the cons i have had with calvary are more easily maneuvered when the pool is involved.  for instance, he had some extreme anxiety about moving past the shallow end or away from my side at the beginning of this year.  and i anticipate this will be the same every year.  i think all children have to get comfortable with the skills they had gained the previous summer...but with calvary it goes a little farther.  we have been swimming at least 3 times a week this summer and it was only yesterday that i finally convinced (i.e. pulled him off of my body and told him to swim to the ladder) that he could swim in the deep end.  however, unlike his response usually to such circumstances, he smiled big and wanted to try again.  and although he loves to jump in the deep end and play with me in the water...he is content to float on his own or have his goggles on and watch other people.  his favorite thing is to look at finley's feet under water..."her feet are so cute mama!"

i look forward to summer every year because calvary is completely in his element.  maybe one day in the future we can look into a year round swim program.  nothing is close to us right now...but one day...

Love notes...

Calvary's note for Finley this morning

next please...

we are now three days in to changing the dosage for calvary's medication.  we have seen an almost immediate return to the irritability and anger.  but we have also seen an a much less anxious child.  at this point it is difficult to choose the lesser of two evils. 
i feel odd...like i should be doing something but i have no idea what to do...i am not even sure what i should be researching or studying...but i am also not anxious.  i have peace but at the same time i feel ready...i'm not sure what i feel "ready" for...that is the only way i know how to describe it...ready.
so, here i am.  ready. 
he may have tore apart a room yesterday, but he went to sleep with ease.
all i know is that God has a plan for him.  and i know that we will see what that plan is.

a setback...

calvary is still at the .5 mg dosage of his medication and we have been grateful for the results that we have seen while taking it.  he has been so much less irritable and so much slower to anger than before.  christy pretty much nailed down the effect by saying that he used to go from 0-10 with very little provocation but now it is more like 0-5.  he is still quicker to react than all of my other children and he is still easily frustrated...but we lose him to meltdowns so much less frequently.  we used to have meltdowns at least daily...now, we have one every week at most. 
i struggle with what i am about to write next because i don't want to feel at all as if my faith is faltering.  i don't want to question or wonder what could be because i want my faith to be strong even when the circumstances are less than perfect.  i am still disappointed in myself for how grieved i was by the initial suggestion of calvary's diagnosis.  my faith proved weak.  and i want to stay strong and not give way to my anxieties.
but.
but one day i know i will want to remember how we have maneuvered through this situation. 
the truth is that we have seen changes in calvary that are troublesome.  the changes really started in disney world and kyle and i just chalked it up to the over-stimulation and lack of routine.  however, since we have been home the anxiety has only continued...and in some ways increased.  we still are not quite in a "normal" routine because the kids have been going to VBS all week.  we haven't been home before 9:45 so they have not been in bed before 10.  the days have been jam packed with swimming, friends, and parks. 
i was impressed with his willingness to go to VBS.  there was only one night that he refused to go and that was the night that i had decided to cut his hair earlier in the day.  most people may not see the correlation but anyone that has tried to cut his hair would understand how that pretty much takes all of him for the day. 
his parking lot anxiety has increased to the point that he held my hand and begged me to, "just get this over with".  one night he was crying laying in bed saying, "i just don't want finley to get hit by a car".  i assured him that he didn't have to worry about that. 
last year at the pool he was jumping off the diving board and swimming in the deep end.  this year he refuses to leave the shallow end and most of the time he refuses to leave my side. 
but most of his worry comes out at night.  he doesn't want to be alone.  he doesn't want the lights off.  he wants to go to sleep but he is so nervous about everything that he just asks me to sleep in the bed with him.  this is huge because calvary has NEVER wanted to share his bed with me or anyone else. 
i told him that we would pray.  i pray that he will sleep peacefully and that he will rest all wrapped snug in God's love.  i pray for his mind to be at ease.  after i pray he usually keeps his eyes closed and drifts off to sleep.  the other night he came to where kyle and i were sitting on the couch.  he was worrying about things and i told him that we just needed to pray.  so we held hands and prayed...afterwards he still didn't want to go to sleep because he was still scared.  i told him that we have asked God to take care of him and to help him sleep peacefully so now he needed to show that he believed that God was going to do what we asked by going and trying to sleep.  i was so happy to see him stand up and walk to his bed.  he believes that God is faithful.  he believes that God will take care of him.  in so many ways right now he is like me.  he needs to be reminded that what is out of our control is out of our control and we can rest in knowing that God has a plan for us.  just like me.  but anyway, he went to sleep. 
each morning i ask him if he slept peacefully and i remind him that God was faithful...
i know i can't take aways his worry but i want to point him in the direction of the One who can.  i believe that if i teach him to turn to God now that it will be easier for him to turn to God later. 
after the other night kyle started doing some more research and we learned that anxiety is one of the top three side effects of the medicine calvary is on.  most of the information provided said that the symptoms resolved after the dosage was adjusted or eliminated in just 3 days. 
i was relieved to see that this anxiety could be a side effect of the drug and not a symptom that pointed towards bipolar disorder.  i am still praying that bipolar disorder is not what we are working with and i truly believe that we are not.  i just worried that if i went to his doctor that she would immediately want to medicate the symptoms instead of acknowledging that the first medication is causing the symptom. 
so, i called a doctor that has made so many connections between autism, mood, and food and made an appointment.  she apparently is in high demand because our first appointment is august 24. 
i am not going to give up or give in so easily but i also cannot just watch my child suffer. 
i went to check on him one night and as i watched him sleep i just cried.  i feel so guilty thinking that the medication that i gave to help him could potentially be what has made his mind so riddled with worry.  it breaks my heart that his life is so difficult but i have to take my own advice...i have believe that God has a plan for calvary, i have let my specific requests be known, and now i have to walk in that belief. 
so that is what i am doing. 

asperger's and disney world...

i mentioned here that i had concerns about how calvary would handle disney.  my concerns were rooted in years of birthdays and holiday celebrations that have been incredibly stressful and i cautiously anticipated issues for this trip based on those experiences. 
a few weeks before we left i ran into a friend at the store whose daughter has some aspie tendencies.  she had been to disney a few months earlier and she swore that the "magic of disney" worked wonders for her daughter. 
leading up to the trip:
however, a few days before we left to go my concerns started to be validated...calvary started crying at night saying that he didn't want to go to disney world and that he would miss his bed.  it seemed that he could be excited while everyone else was excited, but whenever he would have a chance to think on his own he would only be able to focus on the disruption to the expected. 
the drive:
we made our way down with very little issue.  i made sure that calvary had his own space.  we moved finley's seat to the middle row and harper wanted to sit next to her.  we folded two seats down in the back and we gave calvary the other seat.  he loved having his own space and we had a flawless drive down. 
the hotel:
our only issue upon arrival was sleeping arrangements.  calvary is not too keen on sharing a bed and the thought of having to share a bed with harper or oliver jack was too much for him.  we handled that issue with relative ease by offering to let him use the pull out sofa in the living room.  the only problem throughout the week was calvary not having any "space" to call his own.  he usually can retreat to his room whenever he is overwhelmed but even though the resort's room was VERY spacious i failed to designate a place for him.  in hindsight i should have established a place for him from the very beginning but in spite of this we still had very little issues in the room. 
as the week progressed i noticed that calvary became more and more anxious about the parking lot and elevators.  at one point he told me, "the devil is my number 1 enemy but cars are my number 2".  i think that more stimulation that he started processing the more difficult it was for him to categorize the excitement into safe and unsafe.  he stayed close to me whenever we were outside of the room...usually holding my hand.  interestingly, i noticed that he seemed less concerned for everyone else's safety.  since we have been home i have noticed a return to the policing of finley and oliver jack in parking lots and stores, but while we were in disney he didn't really do this as much.  my analysis of this is that he was too concerned for his own safety to be worried about theirs.
the parks:
disney world is overstimulating for the most typical of people but for someone who is as much of a sensory avoider as calvary is it can be almost tortuous. 
i think the biggest issue calvary had with the parks is how unclear most of the rides are without experiencing them first.  so much is left to the imagination and calvary's imagination is riddled with catastrophic thinking...
he would want to ride but not want to ride...and then he would whimper cry almost the whole time until the very end...then he would like it and want to ride again.  the problem with that is the whole crowd issue...disney in june doesn't offer a whole lot of do-overs. 
after seeing the big hill of splash mountain calvary confidently declared that he would ride.  as we used our fast pass to breeze through the line i had to continue to reaffirm him that he would have fun.  i would have never noticed that he was actually taking processing any of the scenery.  1. we were moving too fast and 2. he was mostly hiding his face and whimper crying to the point that i figured he was just worrying more than anything else.  however, we returned to magic kingdom the next day and oliver jack was allowed to ride splash mountain.  as we went through the line calvary told him what he would see at each turn.  i was amazed that he had paid attention enough to notice brer frog's shadow but even more amazed that he remembered to tell oliver jack the next day!  that moment was eye opening to me because i was able to realize how much stimulation he was actually taking in at each turn.  there are so many details at disney and calvary notices every. single. one. 
i anticipated that he would not want to walk much and even though i swore that i would never push a giant child in a stroller i let this be a point of compromise for me.  we were pushing calvary so much and i knew that my only chance at avoiding a meltdown was take some of the physical demands off of him.  so he mostly rode in a stroller. 
at one point, as we were trying to make it back to a ride for our fast pass, calvary and i were walking to keep up with kyle, his mom, harper, and oliver jack.  i didn't let calvary know that i lost sight of kyle because i knew he would lose it.  but at this moment calvary looked up at me and said, "can you smell as good as i can momma?" to which i responded that no, i couldn't.  i told him that his strong sense of smell is one thing that makes him special.  he responded with, "like, i can smell daddy right now."  i was amazed and used this to my advantage and asked him to show me where kyle was...it blew my mind when he paused for a minute...looked over to the left...and said, "there! he's right there!"  this is exactly why i do not try and fool him with food or flavors...a nose like that cannot be fooled. 
kyle and i try to find a good balance between compromise and pushing and one moment where we pushed calvary outside of his comfort zone was such a huge moment of success for him.  harper wanted a frozen lemonade and we finally found a vendor.  of course calvary decided that he wanted one as well and kyle and i knew that we could not come back empty handed for the two left behind.  so harper was left to order two pink lemonades for herself and finley and we charged calvary with the task of ordering two lemonades for himself and oliver jack. initially he refused but we told him that if he wanted one he was going to have to ask for one and pay for it.  he asked us over and over again what he was supposed to say and when he was supposed to give the money.  harper told him that she would go first.  we stood behind them in line and i could hear calvary rehearsing his "lines" over and over again as he waited.  when it was his turn he recited his lines and handed the girl his money.  he turned around to me and said, "i did a horrible job..." i told him that he did a great job and nodded at the lady and said, "i bet that she thinks you did a great job." thankfully the lady caught my hint and told him that he did an awesome job.  he was proud of himself and i was proud of kyle and i for giving him the opportunity to practice. 

overall
i am much too forthcoming to pretend like calvary was under the spell of disney...there was not a day that went by that we were not bending to accommodate the special needs of our boy.  we did some things differently and other things were not done at all.  we pushed him to try new things and compromised what our "normal" standards are on others in order to allow the most peace.  but, while calvary was not magically transformed into a boy without any special needs, he was happy.  he laughed so much.  he tried new things.  he pushed pass his own discomfort.  he never had a meltdown...(well until the car ride home)... i know that we had issues with eating out and eating in...we had issues with the fireworks being late at night...we had a issues with not getting a hole in one at mini-golf...but he wanted to enjoy disney so much that he made himself endure the hard parts.  so maybe that was the magic of disney for us.

beginning and end...

each year i like to try and get a first day of school and last day of school picture taken of the kids in the same outfit the day they wore on the first day.  it makes the differences so much more noticeable to me...and although i messed up on the shirt for calvary (i totally should have looked at the pictures for clarity) it is obvious that so much has changed this year...

Last days...

Happier...

being content...

Philippians 4: 11-13
11I am not saying this because I am in need, for I have learned to be content whatever the circumstances. 12I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want. 13I can do everything through him who gives me strength.

i have been working, and i do mean working, diligently at maintaining a thankful heart over the past few days.  it is amazing how much concentrating on how much i have to be thankful for renews my faith and confidence in the only one with the power to change life.

i have read the above passage many, many times and heard it millions more.  but yesterday i read the entire chapter through new eyes.  i love the translation that i read of verse 13 that says, "i am able because of the one who made me able." 

i feel confident in the job that i have...

"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God." (Phil 4:6).

that's it and everything and yet still more than i feel i can handle sometimes...but it is written right there for me...and i am able because of the one who made me able...
so yesterday was not a great day for calvary.  he was very emotional.  he was overwhelmed very easily.  the cards are stacked against him right now.  we have a little boy staying with us for a couple of days and the change in routine is probably more than i should have taken on right now...but i am also want to be ready to serve whenever i can and not be so caught up in my own circumstances that i fail to see the needs of others.  the school year is wrapping up and every day he is reminded of how things are about to change.  the countdown is both exciting and sad for him.  and so yesterday was difficult.
but each time i started to get discouraged or scared i just prayed and thanked God for what he is doing in our lives. 
i thank God for monday.  what a beautiful gift it was!
i thank God for eating lunch with calvary on tuesday and how happy and excited he was to see us all. 
i thank God for the report his teacher gave me on tuesday letting me know that he has seemed so happy the past couple of days.
i thank God for the fun we all had  playing in the water.
i thank God for the relative ease calvary transitioned out of setbacks such as dinner not being his favorite. 
i thank God that even though calvary had a difficult time reconciling his desire to have fun and his inability to accept change that he was able to talk to me and use his words.
i thank God that he woke up happy this morning.
afterall, with medicine or without calvary is a boy with special needs.  hard days are hard days. 

these are the moments that i am choosing to focus on when i feel the anxiousness creep back in my head.  i also continue to petition for freedom for calvary.  freedom from the burden of a mood disorder.  i am choosing to be thankful and choosing to continue to petition instead of focusing on the what ifs or watching every little setback as a possible sign because i know that if i do as God asks that he will be faithful to what he has promised...

"And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. " (Phil 4:7)

and the peace of God...
such a  promise to this momma's heart :)

excited..?...?..

calvary has been taking a .25 mg of his medication for 5 days now. 
yesterday it was like i woke up a different child for the day. 
he was sleeping so soundly that he didn't even know that i came in the room.  i picked out his clothes, sat beside him on his bed, and stroked his hair before he even stirred.  unlike our normal morning routine of growling about the change from weekend to school day he just gave me a huge smile.  in the midst of a chaotic weekend i had forgotten to go by the store and get milk so i nervously prepared calvary for not being able to have his only acceptable frosted flakes for breakfast.  usually, even if we are having something else that he likes such as cinnamon rolls or even on the occasion poptarts he resists quite vehemently.  yesterday morning, he said "okay" and happily sat at the table. 
after school he got into the car and proudly announced that he was the only kid to get two hershey kisses for his behavior...
i was starting to question whether calvary was simply having the best day that i could ever remember him having or if the meds were to blame (thank?). 
at this point i put the turn signal to go the opposite way than we usually do which signifies that we aren't going home.  calvary NEVER does well with having any after school activities.  usually i prepare him when he gets in the car because that helps his reaction be a little better; but if i ever forget and i start turning before i tell him...well, let's just say it isn't pretty.  even if it is something exciting like going to the park or to get a treat or to meet friends...he just doesn't want to do anything besides the expected. 
but yesterday not only were we going to the store to get milk (he HATES going to the store) but i also forgot to prepare him...the minute i pushed down the turn signal i started waiting for his reaction...but nothing. 
at this point i told them what we were doing and started watching calvary with a little more critical eye. 
at the store he asked to sit in the buggy...which is usual...but he didn't protest when oliver jack got in with him.  he never got irritated with oliver jack's invasion of his space.
finley wasn't exactly well behaved in the store and has herself a little tantrum over candy at the check out.  her correction was to lose the privilege of sharing the candy with her brothers and sister.  she cried in protest the entire ride home.  instead of screaming and growling because of the noise, calvary simply covered his ears and said, "that shouting sure does hurt my ears".
at this point, i knew. 
once we got home, calvary and harper ran off to play.  when oliver jack wanted to join in the play calvary hesitated but eventually allowed it. 
now, here's the moment that i called the doctor...
calvary still didn't really want oliver jack to play with them so he offered to let oliver jack stay in his room and play with his legos!  unheard of...really. 
calvary still had his own opinions about how things should be played.  he had energy.  but he wasn't on edge.  he had lost that intensity that i had come so familiar with that i haven't even realized how much i have catered to it. 
he has had good days...but most of those days are the result of everything being perfect...his routine, his clothes, his environment, his playmates, and his food...but this day was far from calvary's perfect. 
i called the doctor to ask if it was too soon to see results or if it was just my imagination.  she told me that it was to be expected to start seeing results.  praise the Lord! 
i then asked if we were seeing results if we could stay at the same low dosage instead of moving up to a little higher...and praise the Lord again...she said yes! 
so, yes, the meds seem to be helping my boy enjoy his life...he is smiling, he is happy.  he has laughed with oliver jack the past two mornings at breakfast and i can see oliver jack's skepticism in his eyes as they interact...he is cautiously enjoying calvary's relaxed side. 


my prayer checklist

•  we would see results with the first medicine that we try so that we won't have to go on a pill hunt
• we wouldn't have to drug him out
• that we won't see a cyclical pattern in his behavior that needs additional medications to balance indicating early on-set bipolar disorder

i know that we are early in on this, but i am choosing to believe that all of this is an answer to my very specific prayers.  i know that calvary's body could start to respond differently over the next couple of weeks. but my prayer for this medicine has always been that it will help us to rule out what it is not--i don't expect it to be a long term solution or our crutch--and i am grateful for yesterday.  i am grateful for a day that shows me what life can be for him. 

calvary is still calvary.  he doesn't like changes in his routine.  he doesn't like loud noises.  he doesn't want to share.  he doesn't like transitioning from his "obsessions". 
but yesterday, and so far today, i have seen a child that is capable of handling all of these things with far less intervention from me.  what a gift. 
still praying for my son. 
my prayer is that others will join me...

a change in perspective...

as i mentioned in an earlier post, i have been going through some semblance of grieving over the past week or so.  some moments are harder than others but the common link between them all is that i am raw.  the hardest day, by far, was the day that i filled his prescription.  the internal battle i was fighting was impossible to keep to myself and the tears flowed freely.  i haven't felt so emotional since harper's early years.  i feel the same lack of control over the future.  the possibilities are paralyzing and the fact that i cannot simply choose a path knowing that the path i am choosing is the right one is terrifying.
i am doing all i can.  but knowing that it is not enough to protect his future is awful. 
kyle has been lovingly encouraging me that being sad is not doing anything for anyone.  he encourages me not to be locked into my own experiences because 1. we do not know for sure what we are dealing with and 2. my brother's experience is not my son's.  of course being logical in emotion is not always ever possible. 
so i prayed.  i prayed for a change in perspective. 
i dreaded mother's day because i knew i was going to be emotional.  the sadness i had been waking up with was not as evident...maybe because i woke up to finley's sweet smile. 
once we arrived at church i knew i was going to have a harder time because a few sweet people asked about calvary and it was all i could do to answer without tears.  i know that i come across as rude in those moments because i seem evasive...but i have moments when i can talk about things and i have moments when i cannot.  most of the time it has to be on my terms.  on the flip side, i want people to ask about him and all of my children.  it doesn't make sense.  i made it into the service...alone...and found a seat.  harper and calvary were back in the children's worship and kyle was suckered (i mean happy) to serve in the nursery with finley and oliver jack.
i took an few extra tissues in case the mention of mother's day made me a little too weepy. 
the service was sweet and beautiful but the message was just for me. 
the change in perspective that i had been praying for was exactly what i was given.

James 5:7-11 NIV 
⁷ Be patient, then, brothers and sisters, until the Lord’s coming. See how the farmer waits for the land to yield its valuable crop, patiently waiting for the autumn and spring rains. ⁸ You too, be patient and stand firm, because the Lord’s coming is near. ⁹ Don’t grumble against one another, brothers and sisters, or you will be judged. The Judge is standing at the door!

¹⁰ Brothers and sisters, as an example of patience in the face of suffering, take the prophets who spoke in the name of the Lord. ¹¹ As you know, we count as blessed those who have persevered. You have heard of Job’s perseverance and have seen what the Lord finally brought about. The Lord is full of compassion and mercy.

the illustration of a farmer was profound for me because, as matt pointed out, the farmer can control everything.  he can control his ownership of the land, he can control which land to sow, he can control how he sows the land, he can control what he sows, he can control when he sows...but he cannot control the rain. 
i cannot expect to control everything and still have patience trusting that God is in control. 
matt then gave an illustration of a man who had a boulder put into his path.  he told us to imagine that boulder as our trial...of course it was easy for me to think of my boulder at this point in my life...the man could not go around, over, or under the boulder.  God told the man to push on the boulder.  so the man pushed.  he pushed and pushed and pushed.  nothing happened.  the boulder didn't move...not even a millimeter.  so the man threw up his arms and said, "i can't move it!"...to which God responded, "i didn't ask you to move it; i told you to push it."  God then showed the man how much stronger he was having pushed against an obstacle he couldn't control.  the purpose was not to change the path but to make the man stronger. 

Romans 5:3-5 NIV
3Not only so, but we^c also rejoice in our sufferings, because we know that suffering produces perseverance; 4perseverance, character; and character, hope. 5And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us.

i have a hard time looking at this moment with calvary as "my suffering" because the reality is that my only part in it is how much i wish i can fix it for him.  i don't want him to suffer.  my suffering is born out of fear of him suffering.  yet, i do know that this is a trial.  it is a trial that our entire family will face with him.  and i know that all we are asked to do is persevere.  this trial will not last; yet the character that it creates will.  God's purpose is to refine us for eternity. 
my hope has been renewed because i am choosing to hope.  i am choosing to persevere in my faith and not be crippled by the fear of what may happen but choose to believe that whatever may happen will be purposed. 

Jeremiah 29:11
¹¹ For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

my prayer is that i remember this...God has a plan for calvary.  plans to prosper him and not to harm him.  plans to give him hope and a future. 

Trying to pull myself up...

I am trying to figure out how I can go back to thinking of things through the lens of aspergers alone instead of adding on this new unknown. I fear that I am getting so fixated on figuring out this other side that I am not only forgetting that Calvary has Asperger's but that he is not defined by either. And then I worry that if I am having this difficult of a time separating him from his diagnosis how much more difficult will it be for others.
He is first and foremost a child of God. Secondly, he is my son.
All children channel the stress of their parents and although Calvary is not an empathetic child I know that he feels my burden.
I don't want him to feel that weight. I don't want him to misinterpret that weight for him. He is not the burden. These issues are not the burden; the burden is the stress of making the right choices when the future is unknown.
I am trying to pull myself up and I am praying for a renewed perspective. I know that I need to shift my focus not only off of the unknown but onto God as the author of all time.
I am trying. I really am. But this is proving to be one of the most difficult things I have ever done.

It's all about semantics...

Kyle told me about this conversation that he had with Calvary yesterday:

C: "did you know that stingrays can kill people with their sting?"
K: "yea! A while ago there was this man that would go out in the woods and play with snakes and crocodiles named the Crocodile Hunter. He was killed by a stingray."
C: " well I think it is pretty amazing that he found a stingray in the woods!"

These are a few of his favorite things...