Okay....so first of all, its been a year since I posted anything on the blog, Almost forgot I had this, until the need to write a message hit and I knew it was way too much for a FB post. Please forgive me if this seems a bit jumbled, but my mind is on hyper-drive in a state of sleeplessness that begs to be released. NO not my mind, my heart. I promise that if you hang with me through the muck in the beginning, there is a point.
I guess I should try to go back a couple of decades to the kid-adult I was becoming. The people in my life now would never know that I once had a call to the ministry, that I felt led to serve in some capacity. And the people I knew in my teens might hardly recognize the person I've allowed myself to become. Not that the person I am now is a terrible person, but she is definitely not who she was. And that isn't all bad.....
I was born with a strong spirit....an independent, straightforward, unshakable spirit. Some might call this a strong-willed child and see it as a burden, but it too, can be a gift when used correctly. From early on I loved helping others; to make them smile and laugh. I was very involved in my church. Once in college, I was still feeling the desire to enter a field of service somewhere. I needed to love everyone. That is everyone that fit into my sheltered existence of idealism. The only thing was, up until that time of my early 20s, those I loved had done nothing but love me back. I had this grand notion that as long as you did right by others, they would do right by you. Sadly, life doesn't always work that way. In those times of trouble and sadness, I did the very thing I always did. I sucked it up. I pushed on through. I...I...I...I (Do you see what I failed to include? God, My friends, my family, my faith)
On the path of "I' can do it-----I certainly did. I did all the things that I had scoffed at or turned my nose to. In all my years of serving others and giving of myself, I never let any of them in. I never learned their stories; I stayed in mine. I never invested in others; I invested in "I do it myself." (of course, there were plenty of Angels in the trail I was blazing, but I stumbled past them on my journey; using them merely as a stepping stone.) But that trail always has come up short; always has left me yearning for more; always made me feel more and more empty as a person.
Looking back (as they say hindsight is 20/20) I can see how every trial had a moral. a lesson, but many have taken me until now to understand. Perhaps, no most assuredly, because now I am open to see and hear truths I wasn't able to then.....
The first major trial I had was betrayal. Betrayal in love and betrayal in friendships. I spent far too much time playing a victim when the truth was I wasn't the victim. I let my feelings of despair draw me into places so dark, I am ashamed to revisit them. However, without those experiences I would never have empathy the way I do now; God had to break my glass house to show me where the real beauty and strength lies and in whom one finds it. Sort of the ugliest oyster makes the prettiest pearl, if you will.
I had a failed marriage and in that failure, lost contact to my first born for 6 months. It was for the best, as I was in no situation for him to be, but it fractured our relationship. It feels often like I'm digging my way out of a clay pit by my fingernails as I try to build a relationship like it was. He is my mini-me; a "I can do it myself" kid all the way. As I ponder this relationship, the struggle it is and how my absence created a void in his faith in me----I am struck by the fact that this is how God must feel as I continue to put my faith in self instead of allowing Him the ability to lead me; to love me; to teach me. But I also am struck by the fact, that although many days are hard, God is still where I go when I am troubled (after I beaten down every exhausting path I can find) and He is still faithful in His love for me. And even though it might take me 16 years, I am learning valuable lessons everyday,
The Devil is at war----and every time I feel I am getting somewhere somewhat solid, the slick-tongued beast whispers in my ear all the reasons I am undesirable; unworthy; falling short, And I listen----and turmoil ensues. I find myself yearning for things I don't need; desiring things I am not ready for; and self-loathing as I realize my unworthiness.
The past 6 months such a war has been raging inside of me. I hate myself and take it out on those around me. Everything that reminds me of what I failure I am....Several years ago I was asked some deep questions about myself by a dear friend for which I had no answers but now I am beginning to see them. If you were to enter my home today, you would see the turmoil that I feel is so hidden. Piles of unfinished projects; clutter; dirt......all littering the landscape of my home in a perfect illustration of the uselessness I feel. And I look at it and become angry---angry at myself for not being perfect; for not being who I am supposed to be.
In the past few months, I have had several encounters with people who have decided that objectifying me and diminishing my person were the perfect way to approach me. In the past, I would've just brushed it off but now it makes me angry and it hurts and it makes me ill...Maybe just maybe the turmoil inside is the very need I have to BE VALUABLE when everything around me says no. and maybe, God is trying to reach inside to tell me this. And he sends angels along the way as I am often too deaf to listen directly to Him.
3 months ago, I had a conversation with a dear neighbor of mine. Something Sean had said frightened her and I was doing my best to assure her that all was well. I blindly told her to call on God when she is scared (that's what I'm supposed to say, right?) And she simply said, but what if my faith is small? That timid, quiet little question resonated in a way that had me digging for a way to tell her faith, no matter how small, carries one through. I even went so far as to write her a letter outlining her value and how faith as a mustard seed grows in to something so strong, even you friends can shelter there. A letter I never delivered.....too afraid I think because of the truth in those words.
So fast forward to last few weeks-----I had some revelations with the girl at work. Shared with her the fear I have at the anger and fear I have inside....and the deep NEED to end it. I am not liking who I am; I am not liking how I feel; and I certainly am not liking how my environment (including those in it) are suffering because of it. I told her I knew the simple steps I needed to get started on to become who I was intended to be, but that the steps were like giant caverns I had to cross and it seemed impossible. I decided I needed to one: work on my physical self. Two; work on my environment (if its cluttered, so will the rest of my life be)....And three, work on my spiritual self. I also expressed how lonely I am despite friends and family---that I had a desire for "my person" but was in no place to let one in. We set off on a journey to get more physically fit.. A dear friend of mine gave me a copy of the Insanity workout and its going to kill me LOL. I've started making small strides in de-cluttering my life. But I haven't been able to cross the void in my spriitual aspects. It feels like I am so disconnected. Unable to hear what is being said.
This past week---several things have occurred. I had a complete stranger say to me "until you are who God wants you to be, there will be no "person" for you" Then I watched in utter horror and sadness as the world around me began to crumble......financial losses (though small are a big deal at our budget), innocent lives lost; hate upon hateful act. And I've not slept. I knew from the past that when my body absolutely will not rest, that God is shaking me, begging me to come to intercession with Him. And so I did---2 nights in a row, I sat up and I prayed for America; prayed for my friends and family; prayed for Love. And while I know it was necessary; I still felt empty and conflicted. There was something I was missing. Something I couldn't hear.
This morning marks the 3rd day I've been unable to sleep. So I grabbed the Bible and begged to be shown what I was supposed to hear....What is going to bring me peace? And as I read, I sobbed....
"I have chosen thee in the furnace of affliction" Isaiah 48:10. I. HAVE. CHOSEN. YOU. That alone had me in tears. Because in those 4 simple words, I was reminded that I have value. I was reminded that no matter how broken I am; or how tarnished---God Chose Me. and it further tells me that throughout any trial; throughout any pain....God chose me. I was reminded of a story I once read about the refining of silver. When a piece of silver is hammered into some piece of jewelry or dish, it is tarnished and ugly. It has all the marks from the hammer; seemingly bruised in color. But the silversmith takes that piece and places it deep in the fiery hot furnace. The hottest spot there is. And he keeps the it there until when he pulls it out, he sees his reflection in the surface. How fitting. Life beats and batters us; we feel as though we will never survive; yet in the worst of places, God is there watching, waiting to see His reflection.
And as I opened my email, I read this devotional:
"Simon, Simon, Satan has asked to sift you as wheat. But I have prayed for you, Simon, that your faith may not fail. And when you have turned back, strengthen your brothers." (Luke 22:31-32)
The author states that Satan asked to sift (test) Peter and that God allowed it. But that He prayed for Peter to stay strong throughout the trial. and In the end Peter becomes a stronger man of God.
God chose me and God prays for me..Nothing this world throws at me; Nothing that Satan tries to remind me of will Keep those two things from happening. And though the world seems consumed by hatred and unrest; the same goes for all of God's children. He chose YOU and he prays for your faith to hold strong throughout all that trials. Two simple phrases and now my eyes droop in sleep. I hold tight to the fact that I am not lost; That I am a Child of God who is holding on to me. Nothing in my past defines me;
Pray for each other. Pray for those innocent. Pray for those blinded by emotions. Pray for the unrest. Pray for the broken. Pray for each person that you meet. I challenge each of you.....instead of making a judgement; instead of fueling the fire; Pray for each and every person. Love each and every person. You do not have to agree on every matter to love them. You do not have understand them to love them But I promise through love comes discernment. Through discernment comes peace.
God Bless you all.
A running log of my musings; the sights and sounds as I see them; what Autism teaches me; what my "personal life" has rewarded me....and anything else that pops into my sarcastic little mind
Saturday, July 9, 2016
Friday, May 29, 2015
DATING sucks.....and other life thoughts
So this blog may seem a bit scattered, but hang with me--I promise it has a point.
A couple of months ago my eldest son turned 15---and opted to have a group of his buddies go rock climbing at a local gym and out for pizza, etc. 15 yr old boys are a hilarious group to hang out with--I recommend it for everyone. They are also very open, honest, and competitive. Their need to outdo the other on the rock climbing walls led to a very QUIET ride back home as they all all passed out LOL. But the most interesting part was a dinner---we went to this great Brick Oven pizza and everyone ordered their own personal creations. One kiddo starts talking that he will probably be moving this June because his mother is "in love"--said in a dramatically snarky fashion. Then he goes on to reply that she is so afraid to be alone and so desperate to have a man that she is planning a move after 3 weeks of knowing him. The boy was upset but trying to be cool about it---says, "I'm not even 16 and even I know that's not the way to love." I remember thinking---man, glad I'm not THAT mom---(remember this because it is important later.) I also remember wanting to grab that sweet young man and give him a big ole mommy hug, tell him to stay strong, and pray it'll all work out for them.
Around the same time, my besties, my girls decided that I need to become more girly and "put myself out there." It was doomed from the beginning. I'm closer to 40 than not and I can't remember ever really having a "girly" moment---but it was their mission and I allowed them to talk me into a transformation. The works---I got my hair cut and colored (great look btw), started wearing makeup regularly and wearing more than yoga pants, flipflops and tees. And I have to admit---the attention was kind of a pick-me-up to this momma. So much, that I yet again agreed to try the online dating scene again (a previously scarring fiasco that required a contingency plan involving my mother, a fake ER visit, and a well timed call from a deputy friend......yes it was THAT bad). Now at this point, I guess I should mention that I live in the middle of BFE Arkansas----solely to maintain a reasonable joint custody arrangement with the previously mentioned 15 yr old. It's an HOUR from anything and nobody gets here by accident----so needless to say the dating pool is non-existent, as are the opportunities for young people. Not to mention dating is hard, dating with kids is worse, and dating with a special needs kiddo is overwhelming and seemingly impossible.
So back to the online thing-----i really wasn't feeling it---and not sure what I really wanted----After all, I've convinced myself the last 7 or so yrs that I am content being single; no one is good enough or ready to meet the BUGMAN, etc, etc. Then this GUY messages me----something about if it weren't for the distance, he thinks we'd be a great match---I check him out----good looking, very solid background, single dad, etc. So we start chatting and it is going well.....really well. We talk about everything from the outdoors to travel to autism----REALLY talk about Autism---I lay out all the HARD parts----the parts people run from, the parts that scare people, the realities----because if he cannot handle those, he certainly doesn't deserve to meet the BUGMAN and enjoy the overwhelming long list of fabulous things about him. Guess what---he still wants to meet. So we do about 2-3 weeks in---and the date goes really well. We have instant chemistry; he was super easy to talk to and be around. Overall great experience.
During this time, the BUGMAN and I really start to get involved in a NWA homeschool group---a fabulous group of baby-wearers, all natural, holistic, nature/art loving people---our people. And they are wonderful with him---even when he's too rough or too loud or too HIM. We start to explore the area too---LOVE it. The parks, the museums, the activities, the resources---just so much more that I can give to him and his education in that area than I can here. So we make weekly excursions up there checking things out---the Bugman is loving it and says he loves how nice the people are to him there---they don't mind that he is weird, he says. So i contemplate what moving there would mean....because the logistics for us to move are way more than the average bear.....jobs, therapists, homes, parents, caregivers, doctors, etc.
Back to the guy----2 weeks after the first date we are planning to try another meeting---and the distance hits HIM----2 hours is a lot for 2 kids with no responsibilities to handle; its almost impossible for 2 adults with 4 kids between them to swing. The logistics alone are staggering---plus we both want that forever thing and its hard when he can't just pop over any time and vice versa. However, we decide we will still try a bit and have a 2nd date----it was still a good date, but there was something off------and a few days later he ultimately decides that he cannot handle the distance and needs more than we can pull off. I cannot blame him; don't feel upset; just disappointed that something so seemingly minute is, in reality, a major dealbreaker.....
So, in all this exploring and dating and continuing with my life journey, the journey of a local deputy was cut short in the line of duty. Working in Emergency management, having also been a dispatcher, having mostly EM friends (a lot of them LEOs), this hit way too close to home. My boys and I made posters to show our support and the decision to attend the memorial service for Deputy Sonny Smith. The processional alone had some 160 vehicles in it---the public turnout on the streets was overwhelmingly beautiful. Then the service---I'm not sure how many of you have had the honor of attending a memorial for a person in uniform--whether LEO, FF, Soldier--it doesn't matter---the brotherhood and the ceremonial components are moving. His 2 daughters spoke with such love and admiration for their daddy; his friends brought us to tears-----the memorials instill in you thoughts of admiration, patriotism, love, sadness.
So I get home from the service, had an amazing heart-to-heart with the 15 yr old about all that he witnessed---and then was left alone in the dark to my thoughts------and I was struck by the fact that I am very very alone. Forget that I've been anti-love, anti-relationship, etc---It hit me that my boys will soon be grown and gone---and I will still be alone. ALONE------that word is tremendously frightening in a way I hadn't accepted before----and I had the biggest pity party cry-fest known to man----it was pretty pathetic...... And it hit me (remember earlier)---I could easily be THAT mom----seeking love and fulfillment because being alone is a scary scary thought. And not so much the alone, but what have I done? What have I contributed to society and to mankind that didn't have some selfish reason behind it? What legacy will I leave behind if I died tomorrow?
I don't want this to be the entirety of my life-story-----and I don't want to be alone (those of you that know me---please wipe the shock off your face or I-told-you-so smirks). I am going to continue to put myself out there, and possibly take some risks---look for adventures and new places to explore, because ultimately I want my boys to have rich, fulfilling lives; to experience cultures and the arts; to love ALL of mankind; to volunteer and teach the world; etc. I may never date again (its too painful on the feels) but I will not be alone either----we shall go out into the world and engage it so that they know more than the walls of their tiny worlds. Let the adventures begin.......
A couple of months ago my eldest son turned 15---and opted to have a group of his buddies go rock climbing at a local gym and out for pizza, etc. 15 yr old boys are a hilarious group to hang out with--I recommend it for everyone. They are also very open, honest, and competitive. Their need to outdo the other on the rock climbing walls led to a very QUIET ride back home as they all all passed out LOL. But the most interesting part was a dinner---we went to this great Brick Oven pizza and everyone ordered their own personal creations. One kiddo starts talking that he will probably be moving this June because his mother is "in love"--said in a dramatically snarky fashion. Then he goes on to reply that she is so afraid to be alone and so desperate to have a man that she is planning a move after 3 weeks of knowing him. The boy was upset but trying to be cool about it---says, "I'm not even 16 and even I know that's not the way to love." I remember thinking---man, glad I'm not THAT mom---(remember this because it is important later.) I also remember wanting to grab that sweet young man and give him a big ole mommy hug, tell him to stay strong, and pray it'll all work out for them.
Around the same time, my besties, my girls decided that I need to become more girly and "put myself out there." It was doomed from the beginning. I'm closer to 40 than not and I can't remember ever really having a "girly" moment---but it was their mission and I allowed them to talk me into a transformation. The works---I got my hair cut and colored (great look btw), started wearing makeup regularly and wearing more than yoga pants, flipflops and tees. And I have to admit---the attention was kind of a pick-me-up to this momma. So much, that I yet again agreed to try the online dating scene again (a previously scarring fiasco that required a contingency plan involving my mother, a fake ER visit, and a well timed call from a deputy friend......yes it was THAT bad). Now at this point, I guess I should mention that I live in the middle of BFE Arkansas----solely to maintain a reasonable joint custody arrangement with the previously mentioned 15 yr old. It's an HOUR from anything and nobody gets here by accident----so needless to say the dating pool is non-existent, as are the opportunities for young people. Not to mention dating is hard, dating with kids is worse, and dating with a special needs kiddo is overwhelming and seemingly impossible.
So back to the online thing-----i really wasn't feeling it---and not sure what I really wanted----After all, I've convinced myself the last 7 or so yrs that I am content being single; no one is good enough or ready to meet the BUGMAN, etc, etc. Then this GUY messages me----something about if it weren't for the distance, he thinks we'd be a great match---I check him out----good looking, very solid background, single dad, etc. So we start chatting and it is going well.....really well. We talk about everything from the outdoors to travel to autism----REALLY talk about Autism---I lay out all the HARD parts----the parts people run from, the parts that scare people, the realities----because if he cannot handle those, he certainly doesn't deserve to meet the BUGMAN and enjoy the overwhelming long list of fabulous things about him. Guess what---he still wants to meet. So we do about 2-3 weeks in---and the date goes really well. We have instant chemistry; he was super easy to talk to and be around. Overall great experience.
During this time, the BUGMAN and I really start to get involved in a NWA homeschool group---a fabulous group of baby-wearers, all natural, holistic, nature/art loving people---our people. And they are wonderful with him---even when he's too rough or too loud or too HIM. We start to explore the area too---LOVE it. The parks, the museums, the activities, the resources---just so much more that I can give to him and his education in that area than I can here. So we make weekly excursions up there checking things out---the Bugman is loving it and says he loves how nice the people are to him there---they don't mind that he is weird, he says. So i contemplate what moving there would mean....because the logistics for us to move are way more than the average bear.....jobs, therapists, homes, parents, caregivers, doctors, etc.
Back to the guy----2 weeks after the first date we are planning to try another meeting---and the distance hits HIM----2 hours is a lot for 2 kids with no responsibilities to handle; its almost impossible for 2 adults with 4 kids between them to swing. The logistics alone are staggering---plus we both want that forever thing and its hard when he can't just pop over any time and vice versa. However, we decide we will still try a bit and have a 2nd date----it was still a good date, but there was something off------and a few days later he ultimately decides that he cannot handle the distance and needs more than we can pull off. I cannot blame him; don't feel upset; just disappointed that something so seemingly minute is, in reality, a major dealbreaker.....
So, in all this exploring and dating and continuing with my life journey, the journey of a local deputy was cut short in the line of duty. Working in Emergency management, having also been a dispatcher, having mostly EM friends (a lot of them LEOs), this hit way too close to home. My boys and I made posters to show our support and the decision to attend the memorial service for Deputy Sonny Smith. The processional alone had some 160 vehicles in it---the public turnout on the streets was overwhelmingly beautiful. Then the service---I'm not sure how many of you have had the honor of attending a memorial for a person in uniform--whether LEO, FF, Soldier--it doesn't matter---the brotherhood and the ceremonial components are moving. His 2 daughters spoke with such love and admiration for their daddy; his friends brought us to tears-----the memorials instill in you thoughts of admiration, patriotism, love, sadness.
So I get home from the service, had an amazing heart-to-heart with the 15 yr old about all that he witnessed---and then was left alone in the dark to my thoughts------and I was struck by the fact that I am very very alone. Forget that I've been anti-love, anti-relationship, etc---It hit me that my boys will soon be grown and gone---and I will still be alone. ALONE------that word is tremendously frightening in a way I hadn't accepted before----and I had the biggest pity party cry-fest known to man----it was pretty pathetic...... And it hit me (remember earlier)---I could easily be THAT mom----seeking love and fulfillment because being alone is a scary scary thought. And not so much the alone, but what have I done? What have I contributed to society and to mankind that didn't have some selfish reason behind it? What legacy will I leave behind if I died tomorrow?
I don't want this to be the entirety of my life-story-----and I don't want to be alone (those of you that know me---please wipe the shock off your face or I-told-you-so smirks). I am going to continue to put myself out there, and possibly take some risks---look for adventures and new places to explore, because ultimately I want my boys to have rich, fulfilling lives; to experience cultures and the arts; to love ALL of mankind; to volunteer and teach the world; etc. I may never date again (its too painful on the feels) but I will not be alone either----we shall go out into the world and engage it so that they know more than the walls of their tiny worlds. Let the adventures begin.......
Tuesday, January 14, 2014
New Year, New Beginnings, Eye Opening Conversations
So its been awhile since I blogged anything, but it certainly hasn't been uneventful here.
First, after speaking to SEVERAL parents that are homeschooling, I've decided to give Sean some time off and will begin probably Early February. In the meantime, he is doing daily reading and math games, and we try to incorporate science. The iPad is our asset for sight words, spelling, etc. He is already quite a bit relaxed, minimal behavioral issues (although late afternoon does prove a bit challenging....maybe he needs a nap?) However, once a week, we still go to the school for his weekly "therapy" session with the Behavior people. HE HATES IT!!! He cries there; talks about how much he dislikes it, and within a short time I am being called to the room because he is hiding under a desk, refusing to work, and visibly upset/crying/meltdown mode. UGH!!! I try to explain to them that we don't have those problems at home; that he works and if we hit a roadblock we take a 5 minute break, and resume the activity. And I swear she looks at me like I have an alien coming out of chest. Total "whatever" attitude. So that is something I will be looking at changing--providers, methods, something....
However, on the way to lunch I was talking to him about what happened. Granted his perception is ALWAYS a bit skewed (he frequently perceives things differently than the general consensus), He says to me that He has NEVER liked her. I said I understand that--that there are people I don't always like either, but I have to suck it up until its appropriate to let it out. And I also understood that sometimes work is just too much. He looks at me and says, "mom, I hate myself when I can't hold it together. It makes me sick, no one likes it, and I can't make it stop." Just broke my heart to hear that---But I again reassured him that I do things often that make me cringe at myself as well---What? he ponders. I said, Like when I lose my temper with you because I'm tired or I don't get it. I hate that....It makes mommy feel bad, hurts both our ears, and nobody is happy. He says, yeah, I don't really enjoy that either :). So we drive in silence for a few--then he looks at me and says mom, I love you with my whole heart. I said, I'm glad---I love you more that anything. He says---Mom, I love you because you love me even when I'm unlovable and hate my own self.
WAIT a MINUTE_____Did you SEE that PERSPECTIVE?? You Love ME when I'm UNLOVABLE.....I had to fight back the tears on that one. From an early age Sean has ALWAYS shown me a different perspective--an eye opening one. For this, Autism is such a blessing to me.
And not to leave the Teenager out---Can we say Holy Cow what a maturity he showed over the Holiday? He loves his brother deeply but struggles with how intrusive and demanding he can be. He spends part time with us and part time with his father--which is AMAZING because it gives him a break and keeps the peace. But, I was getting ready to take Sean to grandma and the Teen says, Mom I can watch him. WHAT??? Are you sure? It won't be too much? Nope mom, I've got this. And he did---He was the most AMAZING brother a kid could ask for. He played games, fixed meals, wrestled, harassed and made Sean feel special.
I've also found out things from other parents that have solidified my decision to homeschool Sean. He had told me there was bullying, abuse, etc going on and occasionally had bruises as well as significant behavioral changes. Over the holiday, a parent called me and asked me who Sean had as a teacher. I told her and she said, well I want you to know what I saw in the hall at school. I saw Sean being drug down the hallway by a teacher who had both of her hands tightly gripped to one of his. He wasn't being loud, ugly, or mad and yet this is the way she was walking with him. Just thought you'd like to know. WOW--I had suspicions but it makes ya feel validated when another parent says something.
So this year will be big and scary but God has provided so much for us already and I KNOW he will continue to. I'm looking to change jobs so that I can have my days freed up to be with Sean and take care of school/therapy/docs/etc. I'll try to keep you posted. Until then, I am SO proud of him and his progress this last month. I am a truly blessed mom
First, after speaking to SEVERAL parents that are homeschooling, I've decided to give Sean some time off and will begin probably Early February. In the meantime, he is doing daily reading and math games, and we try to incorporate science. The iPad is our asset for sight words, spelling, etc. He is already quite a bit relaxed, minimal behavioral issues (although late afternoon does prove a bit challenging....maybe he needs a nap?) However, once a week, we still go to the school for his weekly "therapy" session with the Behavior people. HE HATES IT!!! He cries there; talks about how much he dislikes it, and within a short time I am being called to the room because he is hiding under a desk, refusing to work, and visibly upset/crying/meltdown mode. UGH!!! I try to explain to them that we don't have those problems at home; that he works and if we hit a roadblock we take a 5 minute break, and resume the activity. And I swear she looks at me like I have an alien coming out of chest. Total "whatever" attitude. So that is something I will be looking at changing--providers, methods, something....
However, on the way to lunch I was talking to him about what happened. Granted his perception is ALWAYS a bit skewed (he frequently perceives things differently than the general consensus), He says to me that He has NEVER liked her. I said I understand that--that there are people I don't always like either, but I have to suck it up until its appropriate to let it out. And I also understood that sometimes work is just too much. He looks at me and says, "mom, I hate myself when I can't hold it together. It makes me sick, no one likes it, and I can't make it stop." Just broke my heart to hear that---But I again reassured him that I do things often that make me cringe at myself as well---What? he ponders. I said, Like when I lose my temper with you because I'm tired or I don't get it. I hate that....It makes mommy feel bad, hurts both our ears, and nobody is happy. He says, yeah, I don't really enjoy that either :). So we drive in silence for a few--then he looks at me and says mom, I love you with my whole heart. I said, I'm glad---I love you more that anything. He says---Mom, I love you because you love me even when I'm unlovable and hate my own self.
WAIT a MINUTE_____Did you SEE that PERSPECTIVE?? You Love ME when I'm UNLOVABLE.....I had to fight back the tears on that one. From an early age Sean has ALWAYS shown me a different perspective--an eye opening one. For this, Autism is such a blessing to me.
And not to leave the Teenager out---Can we say Holy Cow what a maturity he showed over the Holiday? He loves his brother deeply but struggles with how intrusive and demanding he can be. He spends part time with us and part time with his father--which is AMAZING because it gives him a break and keeps the peace. But, I was getting ready to take Sean to grandma and the Teen says, Mom I can watch him. WHAT??? Are you sure? It won't be too much? Nope mom, I've got this. And he did---He was the most AMAZING brother a kid could ask for. He played games, fixed meals, wrestled, harassed and made Sean feel special.
I've also found out things from other parents that have solidified my decision to homeschool Sean. He had told me there was bullying, abuse, etc going on and occasionally had bruises as well as significant behavioral changes. Over the holiday, a parent called me and asked me who Sean had as a teacher. I told her and she said, well I want you to know what I saw in the hall at school. I saw Sean being drug down the hallway by a teacher who had both of her hands tightly gripped to one of his. He wasn't being loud, ugly, or mad and yet this is the way she was walking with him. Just thought you'd like to know. WOW--I had suspicions but it makes ya feel validated when another parent says something.
So this year will be big and scary but God has provided so much for us already and I KNOW he will continue to. I'm looking to change jobs so that I can have my days freed up to be with Sean and take care of school/therapy/docs/etc. I'll try to keep you posted. Until then, I am SO proud of him and his progress this last month. I am a truly blessed mom
Wednesday, November 20, 2013
Trying to expand my following....
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Friday, November 15, 2013
P.A.N.D.A.S---Yet another acronym to add to the GROWING list in the game of "What's ailing Sean?'
So it's been QUITE awhile since my last post--and oh so much has happened. Sean did amazingly well this year until the end of September/Early October. There was a slight change in his behavior so I began to call the doctor about possible medication issues. His OCD/Anxiety went through the roof; increased noncompliance and meltdown like behaviors. At this time, there was a stomach bug circulating the school, but Sean NEVER had the symptoms at that time.
Fast forward 2 weeks to the 15th of October--Chronic complaining of stomach pains, rapid weight loss (15 lbs in 7 days), aches and pains, but no fevers. We head to the doctor where x-rays pinpoint MAJOR constipation (another chronic issue with Sean despite Mira-lax and probiotics.) The 16th his behavior became very erratic and he made some statements that were concerning, so against my BETTER judgement to allow him to be assessed at a residential facility. They made some medication changes. Almost immediately I noted negative changes. Zombie like, increasing lethargy, VIOLENT mood swings, extra extra sensitive, sensory issues/regression, academic regression, tics, full blown pupils, etc.
I blew a gasket. Refused any further residential treatment after that, (though the school insisted and then made a report to DHS for medical neglect). I made phone call after phone call. Spent most of my work week at the school soothing a very distraught, exhausted, freaked out little boy. November 12th we had another appointment with the psychiatrist. However, this time our reception was unlike any we'd had before. EVERYONE greeted him by name; EVERYONE said "oh this is Sean;" it became VERY evident that the facility knew we were coming in and that he had one perturbed momma with him.
The very first thing the psychiatrist said to me was, "Ms. Ford, I want you to know I THOROUGHLY reviewed his chart yesterday." Then began to ask questions that verified to me, he had indeed, read the chart. The first thing we did was review his most recent behaviors and med changes and quickly agreed to DC the newest drug as it seemed to exacerbate EVERYTHING. We then discussed the physiological things I was noticing, as well as the medical type changes. It was decided then to schedule him for an EEG to rule out Absence Seizures (we'd discussed this before.)
But the newest thing was the introduction of the term P.A.N.D.A.S to me. (www.pandasnetwork.org)
When I began reading the information on the website mentioned above (where the graphic is from), I felt like I was reading a check-list for the life and times of Sean, aka the Bugman. It was such a rush of adrenaline. Of course, the testing is really expensive and not likely going to be covered by Sean's insurance, so we are relying on letters and pleas to change their minds.
In the meantime, I have made the decision to begin homeschooling Sean. We will continue therapy at the school and visit with his peers but he will be attending an online school beginning in January. I am not sure how we will manage financially (so if anyone in my area knows of part-time or evening/night work, let me know), but I do know deep in my heart this is what he is going to need to keep him successful. It will remove the stressors for his OCD/Anxiety and his constant exposure to the germs present.
Keep us in your prayers. All our love.....
Fast forward 2 weeks to the 15th of October--Chronic complaining of stomach pains, rapid weight loss (15 lbs in 7 days), aches and pains, but no fevers. We head to the doctor where x-rays pinpoint MAJOR constipation (another chronic issue with Sean despite Mira-lax and probiotics.) The 16th his behavior became very erratic and he made some statements that were concerning, so against my BETTER judgement to allow him to be assessed at a residential facility. They made some medication changes. Almost immediately I noted negative changes. Zombie like, increasing lethargy, VIOLENT mood swings, extra extra sensitive, sensory issues/regression, academic regression, tics, full blown pupils, etc.
I blew a gasket. Refused any further residential treatment after that, (though the school insisted and then made a report to DHS for medical neglect). I made phone call after phone call. Spent most of my work week at the school soothing a very distraught, exhausted, freaked out little boy. November 12th we had another appointment with the psychiatrist. However, this time our reception was unlike any we'd had before. EVERYONE greeted him by name; EVERYONE said "oh this is Sean;" it became VERY evident that the facility knew we were coming in and that he had one perturbed momma with him.
The very first thing the psychiatrist said to me was, "Ms. Ford, I want you to know I THOROUGHLY reviewed his chart yesterday." Then began to ask questions that verified to me, he had indeed, read the chart. The first thing we did was review his most recent behaviors and med changes and quickly agreed to DC the newest drug as it seemed to exacerbate EVERYTHING. We then discussed the physiological things I was noticing, as well as the medical type changes. It was decided then to schedule him for an EEG to rule out Absence Seizures (we'd discussed this before.)
But the newest thing was the introduction of the term P.A.N.D.A.S to me. (www.pandasnetwork.org)
In the meantime, I have made the decision to begin homeschooling Sean. We will continue therapy at the school and visit with his peers but he will be attending an online school beginning in January. I am not sure how we will manage financially (so if anyone in my area knows of part-time or evening/night work, let me know), but I do know deep in my heart this is what he is going to need to keep him successful. It will remove the stressors for his OCD/Anxiety and his constant exposure to the germs present.
Keep us in your prayers. All our love.....
Friday, September 13, 2013
SPARKLES!!!!!!
So I am so afraid I will jinx the AMAZING year that Sean is having, BUT I have to tell you about meeting with his regular ed teacher this morning.
Just a little background: One of Sean's biggest complaints, pre and post meltdown, is that NOBODY LISTENS. Well, we do listen, but he his expressions of frustrations are not usually perceived as such. I think this is complicated by the fact that when he is in his mellow state he is one of the most verbal, linguistically advanced kids his age. His vocabulary is astounding. HOWEVER, when he is upset or getting close to a breakdown, his statements don't necessarily make sense or clearly express the issue to the "regular" world. He appears oppositional or noncompliant, as they usually are triggered by a task he perceives will be met with failure and his anxiety skyrockets!! Often, if I am getting frustrated with him and my voice indicates that (I am only human), his typical response is a very ROBOTIC, "DOES NOT COMPUTE: PLEASE LEAVE A MESSAGE." It usually is all it takes for me to take a step back and re-phrase, but I am his mom and I've learned his quirks.
Anyways, so the regular ed teacher, Mrs. Garner, is a truly special woman. At open house, her first words were "I don't believe in labels and all kids are successful when you figure out what they need." This morning was my first visit with her since school started August 19th (I usually meet with the special ed teacher because reading/behavior are my concerns.) She said he is excelling in her class; that he is working hard. She proudly showed me sentence/illustrations that he had done in class. She says, they may not be perfect but he is EXPRESSING written thought that is complex and wonderfully illustrated. She also said that he is VERBALIZING his needs when he is getting to a point he needs a break (the special ed room has a quiet room where he can regroup himself away from everyone.) But the best part is this: She said she is figuring out Sean's special language. For instance, if he says he cannot see or he is thirsty, that is a clear indication that he is in need of some down time. And after he gets it, HE GOES BACK TO WORK. No 2 hour screaming meltdowns; no desk throwing; no kicking; no running and hiding. All because she has taken the time to LISTEN to what's NOT being said. I just about cried this morning.
Blessed!!!!!
Just a little background: One of Sean's biggest complaints, pre and post meltdown, is that NOBODY LISTENS. Well, we do listen, but he his expressions of frustrations are not usually perceived as such. I think this is complicated by the fact that when he is in his mellow state he is one of the most verbal, linguistically advanced kids his age. His vocabulary is astounding. HOWEVER, when he is upset or getting close to a breakdown, his statements don't necessarily make sense or clearly express the issue to the "regular" world. He appears oppositional or noncompliant, as they usually are triggered by a task he perceives will be met with failure and his anxiety skyrockets!! Often, if I am getting frustrated with him and my voice indicates that (I am only human), his typical response is a very ROBOTIC, "DOES NOT COMPUTE: PLEASE LEAVE A MESSAGE." It usually is all it takes for me to take a step back and re-phrase, but I am his mom and I've learned his quirks.
Anyways, so the regular ed teacher, Mrs. Garner, is a truly special woman. At open house, her first words were "I don't believe in labels and all kids are successful when you figure out what they need." This morning was my first visit with her since school started August 19th (I usually meet with the special ed teacher because reading/behavior are my concerns.) She said he is excelling in her class; that he is working hard. She proudly showed me sentence/illustrations that he had done in class. She says, they may not be perfect but he is EXPRESSING written thought that is complex and wonderfully illustrated. She also said that he is VERBALIZING his needs when he is getting to a point he needs a break (the special ed room has a quiet room where he can regroup himself away from everyone.) But the best part is this: She said she is figuring out Sean's special language. For instance, if he says he cannot see or he is thirsty, that is a clear indication that he is in need of some down time. And after he gets it, HE GOES BACK TO WORK. No 2 hour screaming meltdowns; no desk throwing; no kicking; no running and hiding. All because she has taken the time to LISTEN to what's NOT being said. I just about cried this morning.
Blessed!!!!!
Thursday, August 29, 2013
Maybe a light at the end of the tunnel....(or at least a crack in it)
At the end of the school year last year, we had regressed so much that Sean spent approximately 1/6th of the semester suspended due to uncontrollable behaviors. He was defiant; physically aggressive; and really obnoxious to be around. I felt like all the steps forward we'd been making were for naught and was so overwhelmed by his regression. The school was pushing for residential/psychiatric placement and I was arguing it was something more than than but couldn't prove it.
I long have thought there was a presence in his life that was pulling out behaviors but I had no proof and, lets face it, my sweet boy had built quite the name for himself.
But this year, I am being stopped by teachers and kids alike to hear PRAISE reports on Sean. The presence that was there last year is gone; and the smiles I missed are back. Not that we are without the occasional meltdown, but he is able to regroup and return to task with minimal effort. Instead of requiring his hand held and constant at "arm's length" monitoring, he is now going from area to area unsupervised and doing it the correct way (quiet, walking, purposeful). I am astounded by his changes. I am joyful at the answered prayers. I am amazed at what he's managed to learn already in just 2 weeks of school. And just this week he discovered he can and wants to make his own HEALTHY lunch.
But I must admit that I am scared. I am that mother that hovers; that shields him from the world and the world from him. This growth is very hard for me because it is forcing me out of the web of comfort and concealment that I had created for us out of necessity and making me put faith in my son's budding independence/maturity. How do parent's do it? How do you know that you child is going to be okay or to make the right decisions? How do you know he's not going to have a bad day and the next you receive an "anonymous pissed of mother letter?" YOU DON'T and that is terrifying to me. I hate the unknown; I hate surprises. I want to be able to glow in his successes but somewhere in the back of mind is always that fear, that doubt.
I am working hard to cut the apron strings to my sweet baby boy. It is hard; it is joyous; and it is life changing. I am seeing a glimpse of the future I always felt was there, but never was quite close to achieving. My baby boy is going to be independent; he is going to be a successful, creative mind that gives to society an irreplaceable contribution--HIMSELF.
I long have thought there was a presence in his life that was pulling out behaviors but I had no proof and, lets face it, my sweet boy had built quite the name for himself.
But this year, I am being stopped by teachers and kids alike to hear PRAISE reports on Sean. The presence that was there last year is gone; and the smiles I missed are back. Not that we are without the occasional meltdown, but he is able to regroup and return to task with minimal effort. Instead of requiring his hand held and constant at "arm's length" monitoring, he is now going from area to area unsupervised and doing it the correct way (quiet, walking, purposeful). I am astounded by his changes. I am joyful at the answered prayers. I am amazed at what he's managed to learn already in just 2 weeks of school. And just this week he discovered he can and wants to make his own HEALTHY lunch.
But I must admit that I am scared. I am that mother that hovers; that shields him from the world and the world from him. This growth is very hard for me because it is forcing me out of the web of comfort and concealment that I had created for us out of necessity and making me put faith in my son's budding independence/maturity. How do parent's do it? How do you know that you child is going to be okay or to make the right decisions? How do you know he's not going to have a bad day and the next you receive an "anonymous pissed of mother letter?" YOU DON'T and that is terrifying to me. I hate the unknown; I hate surprises. I want to be able to glow in his successes but somewhere in the back of mind is always that fear, that doubt.
I am working hard to cut the apron strings to my sweet baby boy. It is hard; it is joyous; and it is life changing. I am seeing a glimpse of the future I always felt was there, but never was quite close to achieving. My baby boy is going to be independent; he is going to be a successful, creative mind that gives to society an irreplaceable contribution--HIMSELF.
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