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.
Saturday, June 16, 2012
Wednesday, June 13, 2012
a story about love...
8 years ago i married the man of my dreams...
and the beauty of that is the fact that usually dreams are only "wishes your heart makes" and not reality.
but it is only with each passing year that i become more and more aware of what a gift my husband is.
he loved me when i was breaking his heart. he loved me when i ran away from him. he loved me in spite of my inability to accept his love.
but that was just the very dramatic beginning of our story.
if our story ended there he would be the hero. my prince on a white horse. but it would make for a very, very long "ever after".
kyle's beauty doesn't stop in those earlier grand gestures of heroism; what makes kyle that much more beautiful is how steadfast he is.
and my love for him only grows and deepens because he is so much more of a dynamic character in our love story than the prince on a white horse.
he loves me every day.
he is the best father to our children.
he is home and present with us whenever he is not working.
he works hard to provide for our family.
he makes me laugh.
he has a super cute smile.
every year he proves himself over and over again when in reality he never had to in the first place. i keep trying to figure out what i bring to this relationship and i constantly come short. but, keeping true to form, he behaves as if he is the lucky one.
i am just so grateful.
i am grateful that my girls get to watch how they should be loved.
i am grateful that my boys get to watch how to be a man.
i am grateful that my children get to call him "daddy".
and i am grateful that i get to call him "my husband".
i love him so.
and the beauty of that is the fact that usually dreams are only "wishes your heart makes" and not reality.
but it is only with each passing year that i become more and more aware of what a gift my husband is.
he loved me when i was breaking his heart. he loved me when i ran away from him. he loved me in spite of my inability to accept his love.
but that was just the very dramatic beginning of our story.
if our story ended there he would be the hero. my prince on a white horse. but it would make for a very, very long "ever after".
kyle's beauty doesn't stop in those earlier grand gestures of heroism; what makes kyle that much more beautiful is how steadfast he is.
and my love for him only grows and deepens because he is so much more of a dynamic character in our love story than the prince on a white horse.
he loves me every day.
he is the best father to our children.
he is home and present with us whenever he is not working.
he works hard to provide for our family.
he makes me laugh.
he has a super cute smile.
every year he proves himself over and over again when in reality he never had to in the first place. i keep trying to figure out what i bring to this relationship and i constantly come short. but, keeping true to form, he behaves as if he is the lucky one.
i am just so grateful.
i am grateful that my girls get to watch how they should be loved.
i am grateful that my boys get to watch how to be a man.
i am grateful that my children get to call him "daddy".
and i am grateful that i get to call him "my husband".
i love him so.
Monday, June 11, 2012
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.
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.
top ten disney moments!
10. going out with kyle for our anniversary...we rarely go out on dates anymore and the fact that we were able to slip away in disney world to celebrate our day was so fun...even if i just kept thinking about how sad it was going to be when all our babies are grown up.
9. oliver jack being able to ride splash mountain, thunder mountain, and star tours...forget that one man that kicked him off of star tours our second time around...he remembers only the thrills of the rides.
8. harper's face during the fireworks...she looked like a character in a story book...mesmerized, dreamy, and happy.
7. holding calvary's hand.
6. finley saying, "ride it! ride it!" when she saw the princess castle for the first time.
5. oliver jack's pants falling down in rainforest cafe.
4. harper wanting to use her money to buy everyone else a gift in the gift shops to the point that i had to finally tell her to think about herself for a minute...she has her moments but this girl has a true heart of a princess...
3. calvary's face during "it's a small world"...
2. finley singing "you are my sunshine"...
1. standing in the rain waiting for the parade and fireworks...i wanted the kids to see the fireworks so badly that i refused to give up...thankfully everyone else was in agreement and we made it fun...and even better, the sky cleared and the fireworks went off beautifully :)
9. oliver jack being able to ride splash mountain, thunder mountain, and star tours...forget that one man that kicked him off of star tours our second time around...he remembers only the thrills of the rides.
8. harper's face during the fireworks...she looked like a character in a story book...mesmerized, dreamy, and happy.
7. holding calvary's hand.
6. finley saying, "ride it! ride it!" when she saw the princess castle for the first time.
5. oliver jack's pants falling down in rainforest cafe.
4. harper wanting to use her money to buy everyone else a gift in the gift shops to the point that i had to finally tell her to think about herself for a minute...she has her moments but this girl has a true heart of a princess...
3. calvary's face during "it's a small world"...
2. finley singing "you are my sunshine"...
1. standing in the rain waiting for the parade and fireworks...i wanted the kids to see the fireworks so badly that i refused to give up...thankfully everyone else was in agreement and we made it fun...and even better, the sky cleared and the fireworks went off beautifully :)
Wednesday, May 30, 2012
disney dilemma
if i am going to be honest i have to admit that i have some reservations about our upcoming trip. we haven't taken a vacation like this since calvary has been alive. we have gone to the beach every year and, as i have mentioned before, the water is the best form of therapy for calvary. we have taken a day trip to carowinds and while he enjoyed himself there were quite a few moments of tension and intensity. he lost his voice from screaming and he had a difficult time winding down after we got home...he remained "on edge" for several hours afterwards.
and while all of this makes me a little nervous the biggest concern i have is the battle calvary has been fighting much more obviously to outsiders lately...i say more obvious to outsiders because i am not sure he hasn't always struggled with this but the medication has really helped calvary have more distinguishable emotions. before the medication all of his emotions were filtered through anger. if he was excited, he would seem angry. if he was sad, he would seem angry. if he was hurt, he would seem angry. but ever since he has been on his medication i have seen calvary show emotions other than anger. he cried one night because i was leaving to have coffee with lori. usually he would just act mad at me and growl and frown.
anyway, the interesting effect has been that i have now started to realize that calvary really struggles with what he wants to do versus what he can do.
i don't mean "can" as in his physical ability...i mean "can" as in what he will allow himself to do.
it is heartbreaking to watch him want so much to do something that he knows is supposed to be fun but his inability to handle change or his almost OCD tendencies keeps him from allowing those things to happen.
i have seen it much more clearly ever since we have started medicating him and it really helps me understand that this conflict has been the root of so much of his anger in the past. before we wouldn't be able to deal with the conflict because we were too focused on dealing with the effect of the conflict. our efforts had to be focused on calming him down.
as annoying as it is to see your child be angry all of the time it becomes almost more heartbreaking than i can handle to see him cry without anger for basically the first time in his life.
i have seen harper, oliver jack, and finley all be sad...but calvary has really disguised his sadness with anger for his whole life.
that being said, he hasn't been overly sad. he has had moments of appropriate sadness. we just aren't used to it.
anyway, back to disney...
i am concerned that calvary is going to have a very difficult time between seeing all of this fun stuff that he wants to do and not being able to let himself do it.
all of this is bound to work itself up into a meltdown of epic proportions.
and disney is supposed to be fun...
obviously this has not happened and i know that this is one of those worrisome moments that i just need to give over to the One who can control it instead of fearing my inability to control....but....that is always easier said than done.
i am thankful that we are going...i just want it to be a wonderful trip full of happy memories...without being overshadowed with any negativity.
they are all SO excited.
and while all of this makes me a little nervous the biggest concern i have is the battle calvary has been fighting much more obviously to outsiders lately...i say more obvious to outsiders because i am not sure he hasn't always struggled with this but the medication has really helped calvary have more distinguishable emotions. before the medication all of his emotions were filtered through anger. if he was excited, he would seem angry. if he was sad, he would seem angry. if he was hurt, he would seem angry. but ever since he has been on his medication i have seen calvary show emotions other than anger. he cried one night because i was leaving to have coffee with lori. usually he would just act mad at me and growl and frown.
anyway, the interesting effect has been that i have now started to realize that calvary really struggles with what he wants to do versus what he can do.
i don't mean "can" as in his physical ability...i mean "can" as in what he will allow himself to do.
it is heartbreaking to watch him want so much to do something that he knows is supposed to be fun but his inability to handle change or his almost OCD tendencies keeps him from allowing those things to happen.
i have seen it much more clearly ever since we have started medicating him and it really helps me understand that this conflict has been the root of so much of his anger in the past. before we wouldn't be able to deal with the conflict because we were too focused on dealing with the effect of the conflict. our efforts had to be focused on calming him down.
as annoying as it is to see your child be angry all of the time it becomes almost more heartbreaking than i can handle to see him cry without anger for basically the first time in his life.
i have seen harper, oliver jack, and finley all be sad...but calvary has really disguised his sadness with anger for his whole life.
that being said, he hasn't been overly sad. he has had moments of appropriate sadness. we just aren't used to it.
anyway, back to disney...
i am concerned that calvary is going to have a very difficult time between seeing all of this fun stuff that he wants to do and not being able to let himself do it.
all of this is bound to work itself up into a meltdown of epic proportions.
and disney is supposed to be fun...
obviously this has not happened and i know that this is one of those worrisome moments that i just need to give over to the One who can control it instead of fearing my inability to control....but....that is always easier said than done.
i am thankful that we are going...i just want it to be a wonderful trip full of happy memories...without being overshadowed with any negativity.
they are all SO excited.
Sunday, May 27, 2012
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...
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