Wow, it seems like such a long time since I've been able to write. Max hasn't been sleeping, so the time I had the first 20 days to write, I haven't had recently. I have had alot of time to think however. I've been thinking about the last 10 years. Different things come to mind, different memories... happy and sad.
I look at my face in the mirror at 3am and see someone I don't recognize sometimes. I see this tired old face and still can't believe its mine. I know how I got here, how we all get here, its called AGING! I don't think it ever bothered me before, my birthday didn't freak me out really... until now. I have recently found myself pulling the skin back on my face to where it should be, where it was just a few years ago, dreaming about the youthful look I used to have... gotta stop doing that while I'm driving down the road, or sitting at stop lights. I think I could actually get a face lift, it doesn't scare me like it used too. If I had a face lift I'd look awake all the time, even when I was exhausted. That's just what I need!!
Anyway, my 30's didn't go off like I had planned. I didn't imagine I'd spend them as a single Mom. I don't think I ever imagined being single really. I've had alot of "Date Nights" but they were Friday nights admiring Charlie on "Num3ers" or Dr. Spencer Reed on "Criminal Minds" or Mick StJohn on "Moonlight" or Dr Jacob Hood on "Eleventh Hour", oh sorry got carried away. But now I just struggle with the fear that the 40's are going to be as hard as the 30's were, if they are will I be able to handle it?
I know that my life with my boys is going to enter territory I am afraid of. Puberty. How on earth am I going to handle that with Max. Will I be able to teach him how to shave his face? How is he going to react when hair starts to grow in places it isn't growing now? My angel faced 11 year old will be growing into a man as I'm growing into old age. What if I can't handle it by myself? I keep praying that God won't leave me. I've had my doubts over the years sometimes if he was even there, but I know if he wasn't I'd probably not have survived some of this.
I really had a wake up call on Thursday, and the anxiety of that day will probably never leave me. I came down with a migraine headache, one so bad I couldn't even stand up. My dog knew something was wrong as he wouldn't get off my lap... even as I sat in the bathtub begging for the pain to stop. I was able to get in touch with one of Max's respite workers who picked him up from school for me and took him to get something to eat, she also got dinner for Jay while they were out. Max's other respite worker came over with medicine for me and food, and my Mom and sister came from an hour away to help. I can't explain the terror that raced through my mind thinking "I'm really alone, I'm really alone" If all those people hadn't come to my rescue... god only knows what may have happened. I couldn't care for myself or my sons, and the boys must be tended too. That day will stick in my soul forever. It is just a constant reminder, more so now than ever... nothing can ever happen to me.
Every Mom I have met over the years of autistic children will say "I can never grow old, I can never die, what would happen to my kids?" I felt with every breath in me what those words really meant on Thursday. Thank goodness I had help that day, but it could just as easily went the other way. There is no way to prepare for it if it does. I just have to hold on tight and keep my fingers crossed that I will be ok. So every night before I go to sleep, I just ask, "God, please just let me be ok"
Until tomorrow....
Monday, January 25, 2010
Friday, January 15, 2010
Day #20
Hello everyone!!
I thought I'd come back and have so many interesting things to talk about. I think my brain is still broken, well maybe sprained is a better word. The nicer weather has helped, we can enter the outside world without freezing to death.
Max has been very loud the last couple of days, happy screeching noises. He has startled people everywhere we've gone the last couple of days, me included. But anymore the phone ringing makes me jump. I haven't been able to sleep, my mind is always racing, I fall asleep and wake up all night long. I don't know why, usually I hit the pillow and I'm out, but I can't seem to keep my eyes from opening these days. Very strange seeing as for many years I couldn't keep my eyes open. I don't think I'm worried any more than usual, just preoccupied.
Many things go flying across my mind, like puberty, and adulthood. What new challenges will I face when Max is 13 or 16 or 26. What new challenges will he face? What about Jay.... will he be able to find his way to success? I don't have any doubts about that. I am curious to know what he will do with his life. He is so bright, I'm sure he will be doing something he loves.
Max has some emerging independence thankfully. My big concern remains the battle with communication with him.
Over the coming days I am going to share with you stories from my friends with autistic children, one of whom has 3 sons with autism. This is such an interesting life, definitely full of surprises, alot of fears, alot of dedication, and of course love. I know you will be touched by their stories. I know that I have learned alot from them, and have the utmost respect for them. Autism is a daily struggle no doubt, but I wouldn't have become who I am today without it.
My soul sister and I talk about how we've grown.... on the inside, all the time. We have learned so much about ourselves on this journey, and certainly the aha moments are appearing everyday, it is fascinating sometimes to think about what I've learned, and I'm sure that each day ahead will teach me a new lesson, or give me a new insight. That is something I am grateful for.
I wanted to tell you all I had plans for a great adventure this weekend but it will have to wait. I don't feel up for it, at least not right now. Maybe tonight I'll be able to sleep and I'll have a burst of energy tomorrow.
Until tomorrow....
I thought I'd come back and have so many interesting things to talk about. I think my brain is still broken, well maybe sprained is a better word. The nicer weather has helped, we can enter the outside world without freezing to death.
Max has been very loud the last couple of days, happy screeching noises. He has startled people everywhere we've gone the last couple of days, me included. But anymore the phone ringing makes me jump. I haven't been able to sleep, my mind is always racing, I fall asleep and wake up all night long. I don't know why, usually I hit the pillow and I'm out, but I can't seem to keep my eyes from opening these days. Very strange seeing as for many years I couldn't keep my eyes open. I don't think I'm worried any more than usual, just preoccupied.
Many things go flying across my mind, like puberty, and adulthood. What new challenges will I face when Max is 13 or 16 or 26. What new challenges will he face? What about Jay.... will he be able to find his way to success? I don't have any doubts about that. I am curious to know what he will do with his life. He is so bright, I'm sure he will be doing something he loves.
Max has some emerging independence thankfully. My big concern remains the battle with communication with him.
Over the coming days I am going to share with you stories from my friends with autistic children, one of whom has 3 sons with autism. This is such an interesting life, definitely full of surprises, alot of fears, alot of dedication, and of course love. I know you will be touched by their stories. I know that I have learned alot from them, and have the utmost respect for them. Autism is a daily struggle no doubt, but I wouldn't have become who I am today without it.
My soul sister and I talk about how we've grown.... on the inside, all the time. We have learned so much about ourselves on this journey, and certainly the aha moments are appearing everyday, it is fascinating sometimes to think about what I've learned, and I'm sure that each day ahead will teach me a new lesson, or give me a new insight. That is something I am grateful for.
I wanted to tell you all I had plans for a great adventure this weekend but it will have to wait. I don't feel up for it, at least not right now. Maybe tonight I'll be able to sleep and I'll have a burst of energy tomorrow.
Until tomorrow....
Wednesday, January 13, 2010
Day #18
I have decided to write 2 days a week instead of every night. I don't want to lose anyone who is interested in reading because my posts may seem less interesting than they did in the beginning days of my blog. I will be back on Friday night to begin fresh.
So come back on Saturday morning!! Thanks so much for all the emails and support, I appreciate it more than you know! See ya Saturday
So come back on Saturday morning!! Thanks so much for all the emails and support, I appreciate it more than you know! See ya Saturday
Tuesday, January 12, 2010
Day #17
Tonight I won't be writing much..... it has been a quiet day other than the door slamming 38 times. I hope that tonight's episodes of door slamming will be an isolated incident. We've had so many days in the last few months where all Max does is slam the door over and over for the majority of the night, all the while screaming or crying, tonight's bring those memories back. He did happily go out shopping with his respite worker this evening and had a good time. I got a chance to check my email.... I don't get a chance to get to the computer until everyone is sleeping
Jays counselor came over tonight as well. I am so thankful for Max's people and Jays people, I can't even put into words what they mean to me. They greet us with a smile and never seem in a rush to leave, its so nice to see friendly faces that enjoy our company. For those moments in time, things feel calmer.
I have been working a second job during part of the school day these past few days and it may continue long term, so tonight I have to catch up on things I didn't get done today, and won't get done tomorrow.
Thanks for continuing to read!
Until tomorrow....
Jays counselor came over tonight as well. I am so thankful for Max's people and Jays people, I can't even put into words what they mean to me. They greet us with a smile and never seem in a rush to leave, its so nice to see friendly faces that enjoy our company. For those moments in time, things feel calmer.
I have been working a second job during part of the school day these past few days and it may continue long term, so tonight I have to catch up on things I didn't get done today, and won't get done tomorrow.
Thanks for continuing to read!
Until tomorrow....
Monday, January 11, 2010
Day #16
"Its like Ground Hog Day"
I was racing around this morning, half confused about what I was doing. Letting dogs in and out, finding clothes for Max blah blah blah.... I dropped them both off to school than began a race to beat the clock finishing one job before I had to get to my other one. At some point today it dawned on me that my life is like that movie "Ground Hog Day"
Every morning I wake up and it feels like dejavu. There must be something in each day that I need to do differently, do better, do less... to get to a new day... a new day that doesn't look just like the one before. My list of things to do in a day is the same every day, day after day. No wonder I feel like a robot, no wonder I feel like I'm in a daze. Its the same day over and over, like the twilight zone. "Do not adjust your tv screen, you are about to enter the twilight zone" Hmmm.. I'm not sure if that's exactly how that show begins but you get my drift.
So in order for my boys and I to escape "Ground Hog Day" I think I must have to fix something about this day. The question is, what do I change, or fix? I can't break away from the routine, it upsets Max, that is to much to handle.
Tonight I upset the routine by taking him into McDonald's to eat in the Play Place... instead of eating he just wanted to sit at the bottom of the slide until the other children came sliding down, then he'd hurry up and move, running through the place to the doorway into the other dining area... stopping in the doorway and bending down to touch his feet, then the ground. Over and over he did this screaming "Wabu" as loudly as he could, all the other children watched him curiously as many people do. I figured the other children were loud, so I let him be loud. He just plays differently than the other kids do. Today however, I didn't have to spend any time explaining his behavior to anyone. It was kind of nice. Jay always sits idly by ready to be the information giver to anyone who looks at us cross eyed, this time he didn't have to say anything.
Tonight Max would eat nothing, but the frosting off a donut, he went to sleep at 10:30 uninterested in anything but his blankets.
I still believe that variety is the spice of life, and we are lacking variety. I think I'll explore bringing more variety into our day and see how Max handles it. Maybe if I do that we could escape this repeating day.
Today I remembered that my glass was still half full, and that's a good thing..I think it just needs to be filled with something different sometimes. I have always been full of wonder lust...used to get me in trouble in my younger days, I feel like I need to rent a red convertible, put the top down, everybodys seat belt on and just go, go somewhere new, do something new. I'm not sure if I'm as brave as I used to be unfortunately. Maybe I have spring fever, ants in my pants, a midlife crisis. I think its time for an adventure. It may be a few days before I can figure out what that adventure will be, but I'll let you know. Any suggestions?
Maybe the boredom over these really cold winter days is starting to get to my boys, both have seemed more easily agitated. That is hard for me to handle more often then not. I need to make them laugh more. How do I do that though.. when Max finds very few things funny. My mission is to find something new to do this weekend, I'll tell you about it then.
Until tomorrow.....
I was racing around this morning, half confused about what I was doing. Letting dogs in and out, finding clothes for Max blah blah blah.... I dropped them both off to school than began a race to beat the clock finishing one job before I had to get to my other one. At some point today it dawned on me that my life is like that movie "Ground Hog Day"
Every morning I wake up and it feels like dejavu. There must be something in each day that I need to do differently, do better, do less... to get to a new day... a new day that doesn't look just like the one before. My list of things to do in a day is the same every day, day after day. No wonder I feel like a robot, no wonder I feel like I'm in a daze. Its the same day over and over, like the twilight zone. "Do not adjust your tv screen, you are about to enter the twilight zone" Hmmm.. I'm not sure if that's exactly how that show begins but you get my drift.
So in order for my boys and I to escape "Ground Hog Day" I think I must have to fix something about this day. The question is, what do I change, or fix? I can't break away from the routine, it upsets Max, that is to much to handle.
Tonight I upset the routine by taking him into McDonald's to eat in the Play Place... instead of eating he just wanted to sit at the bottom of the slide until the other children came sliding down, then he'd hurry up and move, running through the place to the doorway into the other dining area... stopping in the doorway and bending down to touch his feet, then the ground. Over and over he did this screaming "Wabu" as loudly as he could, all the other children watched him curiously as many people do. I figured the other children were loud, so I let him be loud. He just plays differently than the other kids do. Today however, I didn't have to spend any time explaining his behavior to anyone. It was kind of nice. Jay always sits idly by ready to be the information giver to anyone who looks at us cross eyed, this time he didn't have to say anything.
Tonight Max would eat nothing, but the frosting off a donut, he went to sleep at 10:30 uninterested in anything but his blankets.
I still believe that variety is the spice of life, and we are lacking variety. I think I'll explore bringing more variety into our day and see how Max handles it. Maybe if I do that we could escape this repeating day.
Today I remembered that my glass was still half full, and that's a good thing..I think it just needs to be filled with something different sometimes. I have always been full of wonder lust...used to get me in trouble in my younger days, I feel like I need to rent a red convertible, put the top down, everybodys seat belt on and just go, go somewhere new, do something new. I'm not sure if I'm as brave as I used to be unfortunately. Maybe I have spring fever, ants in my pants, a midlife crisis. I think its time for an adventure. It may be a few days before I can figure out what that adventure will be, but I'll let you know. Any suggestions?
Maybe the boredom over these really cold winter days is starting to get to my boys, both have seemed more easily agitated. That is hard for me to handle more often then not. I need to make them laugh more. How do I do that though.. when Max finds very few things funny. My mission is to find something new to do this weekend, I'll tell you about it then.
Until tomorrow.....
Sunday, January 10, 2010
Day #15
"What would Max love to do?"
I often wonder what life would be like for Max if I could just figure out autism. Would he like playing football? Would he be a daredevil racing his bike down steep hills? Would he like reading mysteries, or writing like I do? Would he play guitar, piano, have an interest in science or history? What would his bedroom look like if he was able to pick out the decor, who would he claim as his best friend? Would he be the most popular, funniest or teachers pet at school? Would he love fruity pebbles, corn chex, apples or ice cream bars? Would he help elderly people cross the street? Would he love the Three Stooges or Stephen King? I wish I knew.
I know everyone who has children has enjoyed watching their children learn and grow, watching their personalities develop and their interests change. I get to watch Max learn and grow, his personality change and interests change.... just not the way parents of typical children do. The little steps are huge milestones for him. It took so many years to teach him how to put his socks on and to dress himself, but when he finally got it, it was huge. The day he finally understood the phrase "Put on your seat belt" was so exciting. The day he was able to fill up his own drink at the gas station was so liberating for him. Finally all these little things other kids could do, he could do. I am so proud of him for these steps toward independence, and I know he is proud of himself.
Our language barrier is the biggest feat of all. Max appears to understand alot of what you say to him (receptive language) Expressive language ( him talking) is where we struggle most of all. He can't tell me despite an obvious desire to get his point across so often. This is something we work on everyday, at school and at home. I know we will figure out somehow what works best for him. My Mom always says there is room in everyday for a miracle. We still search for Max's. I think the progress he has made thus far is a miracle. Lets keep praying, and working toward that day that he can tell me everything that's been trapped inside for all these years.
Until tomorrow....
I often wonder what life would be like for Max if I could just figure out autism. Would he like playing football? Would he be a daredevil racing his bike down steep hills? Would he like reading mysteries, or writing like I do? Would he play guitar, piano, have an interest in science or history? What would his bedroom look like if he was able to pick out the decor, who would he claim as his best friend? Would he be the most popular, funniest or teachers pet at school? Would he love fruity pebbles, corn chex, apples or ice cream bars? Would he help elderly people cross the street? Would he love the Three Stooges or Stephen King? I wish I knew.
I know everyone who has children has enjoyed watching their children learn and grow, watching their personalities develop and their interests change. I get to watch Max learn and grow, his personality change and interests change.... just not the way parents of typical children do. The little steps are huge milestones for him. It took so many years to teach him how to put his socks on and to dress himself, but when he finally got it, it was huge. The day he finally understood the phrase "Put on your seat belt" was so exciting. The day he was able to fill up his own drink at the gas station was so liberating for him. Finally all these little things other kids could do, he could do. I am so proud of him for these steps toward independence, and I know he is proud of himself.
Our language barrier is the biggest feat of all. Max appears to understand alot of what you say to him (receptive language) Expressive language ( him talking) is where we struggle most of all. He can't tell me despite an obvious desire to get his point across so often. This is something we work on everyday, at school and at home. I know we will figure out somehow what works best for him. My Mom always says there is room in everyday for a miracle. We still search for Max's. I think the progress he has made thus far is a miracle. Lets keep praying, and working toward that day that he can tell me everything that's been trapped inside for all these years.
Until tomorrow....
Saturday, January 9, 2010
Day #14
"Up all night"
Max had been up and down all night, finally getting up and staying up at 3:30am, which means I had less than 2 hours of sleep. This day has been very long and mentally draining. For some reason it seemed more draining than many other days in the not so distant past.
I spent most of the day feeling like I was sleepwalking, kind of giddy in a sense, but more than that I felt like I wasn't really here. Max spent most of the afternoon with Grandma so I could have slept but on Saturday afternoons Jay and I watch a movie before we go pick up Max at Grandmas. Grandma attempted to cut his hair today but he was not agreeable to it so she'd only gotten as far as cutting his bangs before he'd had enough. He spent most of the day tired much like I have. Max is not allowed to take naps, even just a 15 minute cat nap in the middle of the day will prevent him from sleeping during the night. I can't stay up all night two nights in a row, I'm not as young as I used to be. I'll be paying for last nights lack of sleep for days to come.
Max got very upset three times today, sobbing for over an hour the last time. I struggle with those episodes because I don't know what causes them or how to stop them. Big tears streamed down his precious face, that is always hard to see. I checked his head for a fever and he felt fine. If he is in pain I can usually tell. I have memorized all the different shades of crying he has. I know if its pain, anger, frustration based on the tone of his cries. This cry today is the mystery cry because it appears to have no cause and no solution.
When Max is in pain I can ask him to show me where it hurts and he will take my hand and put it where the pain is; head, stomach, arm or wherever. Anger cries just have to run their course. Frustration cries can be subsided if I know what is frustrating him and am able to fix it. He typically has those bouts of frustration when he is trying to do something by himself and he is unsuccessful. He loves the "Babes in Toyland" cartoon, but he wants to rewind it to a very precise frame in the movie, only one in ten times can he make it stop exactly where he wants it too, that always makes him so frustrated, I am not much help in that however.
We all want to hug our children when they are upset, but he doesn't really let you hug him when he's feeling bad, he takes me to the door and removes me from his tv room so he can be alone. Its so hard to not be able to console him, but doing so just makes his crying worse.
Despite having got up at 3:30am, Max didn't go to sleep until 11pm. So tonight I will hopefully sleep till dawn. I pray tonight that tomorrow will be a better, happier day.
Until tomorrow....
Max had been up and down all night, finally getting up and staying up at 3:30am, which means I had less than 2 hours of sleep. This day has been very long and mentally draining. For some reason it seemed more draining than many other days in the not so distant past.
I spent most of the day feeling like I was sleepwalking, kind of giddy in a sense, but more than that I felt like I wasn't really here. Max spent most of the afternoon with Grandma so I could have slept but on Saturday afternoons Jay and I watch a movie before we go pick up Max at Grandmas. Grandma attempted to cut his hair today but he was not agreeable to it so she'd only gotten as far as cutting his bangs before he'd had enough. He spent most of the day tired much like I have. Max is not allowed to take naps, even just a 15 minute cat nap in the middle of the day will prevent him from sleeping during the night. I can't stay up all night two nights in a row, I'm not as young as I used to be. I'll be paying for last nights lack of sleep for days to come.
Max got very upset three times today, sobbing for over an hour the last time. I struggle with those episodes because I don't know what causes them or how to stop them. Big tears streamed down his precious face, that is always hard to see. I checked his head for a fever and he felt fine. If he is in pain I can usually tell. I have memorized all the different shades of crying he has. I know if its pain, anger, frustration based on the tone of his cries. This cry today is the mystery cry because it appears to have no cause and no solution.
When Max is in pain I can ask him to show me where it hurts and he will take my hand and put it where the pain is; head, stomach, arm or wherever. Anger cries just have to run their course. Frustration cries can be subsided if I know what is frustrating him and am able to fix it. He typically has those bouts of frustration when he is trying to do something by himself and he is unsuccessful. He loves the "Babes in Toyland" cartoon, but he wants to rewind it to a very precise frame in the movie, only one in ten times can he make it stop exactly where he wants it too, that always makes him so frustrated, I am not much help in that however.
We all want to hug our children when they are upset, but he doesn't really let you hug him when he's feeling bad, he takes me to the door and removes me from his tv room so he can be alone. Its so hard to not be able to console him, but doing so just makes his crying worse.
Despite having got up at 3:30am, Max didn't go to sleep until 11pm. So tonight I will hopefully sleep till dawn. I pray tonight that tomorrow will be a better, happier day.
Until tomorrow....
Friday, January 8, 2010
Day #13
"We await tomorrow eagerly"
Tomorrow is the day Grandma comes to pick up Max for a few hours. He has been anxiously awaiting I'm sure. I'll pack the orange flowered bag in the morning and he instantly starts looking out the window for her little white car to pull up in front of the house.
Grandma is going to try to cut his hair tomorrow, a task that is near impossible, he is afraid of the scissors and it always starts a melt down. There comes a point however when we have to cut his hair anyway, it grows so fast and he has such thick hair.
Max has never.... yes I said never, in his 11 years, ever gone to to a barber shop for a haircut successfully. If you try to sit him in the barber chair he instantly panics and becomes combative, pushing, crying, trying to escape. It takes several people to hold him still, but is still impossible and given the fact that the barber has sharp scissors, it is to dangerous. So I haven't attempted it for a very long time. For the past several years I have been cutting his hair in his sleep, one side at a time. I usually get one side done on one night and the next side done the following night. He has spent many school days with half a haircut... we just grin and bear it. The teachers at school know how it works, and sometimes try to help.
I also clip his fingernails and toenails in his sleep. If something scares him, I do what I can to avoid the situation sometimes. He's been traumatized by the doctor already, why traumatize him with everything. I know there are some things that can't be avoided, but some situations can be put aside. I seem to modify most things these days. He is so strong I can't do alot of simple things for him without extra sets of hands, extra sets of hands that I don't have most of the time.
Tonight will be short as Max has woken up 5 times as I've tried to write this... tonight he is very restless. I don't know how much he will actually sleep tonight...and if I'll sleep at all. I started writing this at 8:30pm, it is now almost 1:30am and he is awake again. I'm holding my breath that he will go back to sleep, but it looks to be a very long night.
Until tomorrow....
Tomorrow is the day Grandma comes to pick up Max for a few hours. He has been anxiously awaiting I'm sure. I'll pack the orange flowered bag in the morning and he instantly starts looking out the window for her little white car to pull up in front of the house.
Grandma is going to try to cut his hair tomorrow, a task that is near impossible, he is afraid of the scissors and it always starts a melt down. There comes a point however when we have to cut his hair anyway, it grows so fast and he has such thick hair.
Max has never.... yes I said never, in his 11 years, ever gone to to a barber shop for a haircut successfully. If you try to sit him in the barber chair he instantly panics and becomes combative, pushing, crying, trying to escape. It takes several people to hold him still, but is still impossible and given the fact that the barber has sharp scissors, it is to dangerous. So I haven't attempted it for a very long time. For the past several years I have been cutting his hair in his sleep, one side at a time. I usually get one side done on one night and the next side done the following night. He has spent many school days with half a haircut... we just grin and bear it. The teachers at school know how it works, and sometimes try to help.
I also clip his fingernails and toenails in his sleep. If something scares him, I do what I can to avoid the situation sometimes. He's been traumatized by the doctor already, why traumatize him with everything. I know there are some things that can't be avoided, but some situations can be put aside. I seem to modify most things these days. He is so strong I can't do alot of simple things for him without extra sets of hands, extra sets of hands that I don't have most of the time.
Tonight will be short as Max has woken up 5 times as I've tried to write this... tonight he is very restless. I don't know how much he will actually sleep tonight...and if I'll sleep at all. I started writing this at 8:30pm, it is now almost 1:30am and he is awake again. I'm holding my breath that he will go back to sleep, but it looks to be a very long night.
Until tomorrow....
Thursday, January 7, 2010
Day # 12
"Another snow day to recover from"
We woke up this morning with the television screen scrolling *** schools cancelled... Mental break cancelled... unrest begins. What do you do on a day with 7 more inches of snow and the temperature well below freezing again? Its always such a desperate time for me. Why is it that the school day passes so quickly when the boys are in school, but it feels like a minute is an hour on a snow day?
Max was on his third bath before 10am. He did not appear to be unhappy thankfully. The hard thing is finding anything that he is interested in. Today he doesn't want to watch PBS, or movies. He doesn't want to interact with me, he just wants to sit in the bathtub or spin in his chair in the tv room. One of Max's respite workers came over today and brought pizza... the kind he likes but he wasn't interested.
We took 4 rides around town today, slippery roads, covered in snow, slush and ice, but Max was happy. Each time we passed the highway to Grandma's house he'd look at me with pleading eyes... I know what that look means, it means, "Take me to Grandmas"
I would happily have done so if the storm hadn't of made the roads such a mess, not to mention the impending 30 mile per hour winds and white out conditions that the weather men kept talking about.
We went to Walmart and bought play-doh, a less than adequate alternative when he wants to go to Grandmas and I can't.. but he is still content. He is calmer at her house. Less comotion, no dogs!! Not to mention he adores her. Grandma is the only person that can make him happy when I can't. With my tail between my legs I have to say that he would choose her over me anyday, whenever he has the choice he chooses Grandma. Who wouldn't choose their Grandma right?
I wish I could get him to build a snowman, or go sledding, but he doesn't like the cold snow on his hands even through gloves. Going down a hill on a sled would be terrifying for him. I would love to do those things with him, give him those memories to take with him through his life. At least he likes Frosty the Snowman the movie.
By 6pm today Max was so restless, pacing in the kitchen, slamming the bathroom door, slamming the front door. He was carrying around his blanket and pillow (that means take me to Grandmas house). I told him we couldn't go to Grandmas house because of the weather. Max instantly became very upset, slapping himself on the top of his head, stomping his feet, screaming. The screaming startles me so badly, my whole body jumps, my heart starts to beat faster, my hands start to shake. I am suddenly in panic mode, can't think straight, can't talk right, can't focus. I realized that I was pacing when he was screaming. I pace alot, back and forth, back and forth, I've probably walked a million miles in my kitchen. I wonder if I actually walked somewhere instead of pacing... where I'd end up.... down the road, across the street, across the state, across the country? I am for the most part a nervous wreck. It is so heartbreaking when he is sad, is he sad because he's bored, because I can't give him what he wants, or because he has autism?
Tonight as he sleeps quietly I wonder if he's dreaming. What does a child with autism dream about? Can he talk in his dreams like he can talk in mine? I hope someday he can tell me.
Until tomorrow.....
We woke up this morning with the television screen scrolling *** schools cancelled... Mental break cancelled... unrest begins. What do you do on a day with 7 more inches of snow and the temperature well below freezing again? Its always such a desperate time for me. Why is it that the school day passes so quickly when the boys are in school, but it feels like a minute is an hour on a snow day?
Max was on his third bath before 10am. He did not appear to be unhappy thankfully. The hard thing is finding anything that he is interested in. Today he doesn't want to watch PBS, or movies. He doesn't want to interact with me, he just wants to sit in the bathtub or spin in his chair in the tv room. One of Max's respite workers came over today and brought pizza... the kind he likes but he wasn't interested.
We took 4 rides around town today, slippery roads, covered in snow, slush and ice, but Max was happy. Each time we passed the highway to Grandma's house he'd look at me with pleading eyes... I know what that look means, it means, "Take me to Grandmas"
I would happily have done so if the storm hadn't of made the roads such a mess, not to mention the impending 30 mile per hour winds and white out conditions that the weather men kept talking about.
We went to Walmart and bought play-doh, a less than adequate alternative when he wants to go to Grandmas and I can't.. but he is still content. He is calmer at her house. Less comotion, no dogs!! Not to mention he adores her. Grandma is the only person that can make him happy when I can't. With my tail between my legs I have to say that he would choose her over me anyday, whenever he has the choice he chooses Grandma. Who wouldn't choose their Grandma right?
I wish I could get him to build a snowman, or go sledding, but he doesn't like the cold snow on his hands even through gloves. Going down a hill on a sled would be terrifying for him. I would love to do those things with him, give him those memories to take with him through his life. At least he likes Frosty the Snowman the movie.
By 6pm today Max was so restless, pacing in the kitchen, slamming the bathroom door, slamming the front door. He was carrying around his blanket and pillow (that means take me to Grandmas house). I told him we couldn't go to Grandmas house because of the weather. Max instantly became very upset, slapping himself on the top of his head, stomping his feet, screaming. The screaming startles me so badly, my whole body jumps, my heart starts to beat faster, my hands start to shake. I am suddenly in panic mode, can't think straight, can't talk right, can't focus. I realized that I was pacing when he was screaming. I pace alot, back and forth, back and forth, I've probably walked a million miles in my kitchen. I wonder if I actually walked somewhere instead of pacing... where I'd end up.... down the road, across the street, across the state, across the country? I am for the most part a nervous wreck. It is so heartbreaking when he is sad, is he sad because he's bored, because I can't give him what he wants, or because he has autism?
Tonight as he sleeps quietly I wonder if he's dreaming. What does a child with autism dream about? Can he talk in his dreams like he can talk in mine? I hope someday he can tell me.
Until tomorrow.....
Wednesday, January 6, 2010
Day #11
"Sometimes sprinkles are the funniest things!"
Today started off without a hitch. Nobody was late for school! Despite the subzero temperatures my van started. I have to let it run for at least 20 minutes before the heater will blow warm air. No heat would be just miserable on a day like this that has started off with a chilling -3 degrees.
Max had a little accident just as we were walking into school this morning, so I had to drop him off and return home to get him fresh clothes. He is potty trained finally, but we do have the occasional accident.
I had to go to Jays middle school to look over the roster for next semester, he has been bullied relentlessly this year. I called a meeting with his teachers, counselor, prinicipal and social worker to see what we could do to make his school day better, possibly avoid some of these brutal middle school kids. The Principal allowed us to look at the roster so Jay could see if there were any kids in his upcoming classes that really give him a hard time. He was able to switch a class, and was very relieved. There are fabulous people in this school district who have done so much to help both of my sons. Thank God!
I then went home... my day off. I always have such big plans for days like this, but never accomplish anything. I come home and I think my brain just shuts down.... is that possible? It seems like the time flies by so fast. Today I just sat down on the couch and tried to let the insanity get bored with me. It was calm, quiet and relaxing. These are the times that I spend in my imagination... wondering what it would be like to be Drew Barrymore or Rufus Sewells girlfriend, or a jet setting multi millionaire... where would I go first? Probably England to see the castles, maybe get lost in Ireland or tour the Vatican in Rome with my Italian friend Marcello. Imagination is a wonderful thing. Then the alarm rings. I set it for 3pm just in case I'm side tracked so I don't forget to pick the boys up from school.
I pick Jay up first, then Max at his elementary school. We go to McDonalds everyday because he will rarely eat at school and therefore is very hungry, plus I put his medicine in the ketchup on his hamburger. He has been taking prozac to help adjust his moods and it appears to be working. He is very happy today.
Tonight we took our routine trip to Walmart, where he always gets a donut with sprinkles and playdoh... EVERY NIGHT. Max only eats the sprinkles and tonight he kept looking at that donut and laughing. He'd pick a yellow sprinkle off the top, hold it softly in the palm of his hand and laugh like he'd never seen anything so funny. I wish I could see what he sees when he is overjoyed like he was tonight.
Bedtime tonight was relatively quick and painless, a rare occasion, but Max woke up at 11:30 as I was writing this and wanted to take a bath. I went in to check on him and he was sleeping in the tub. This will be a new issue, one I can't allow, for safety reasons. I will have to lock the bathroom at night from now on. I hope this was just a one time thing. I am reminded tonight that I can never let my guard down... never.
Until tomorrow...
Today started off without a hitch. Nobody was late for school! Despite the subzero temperatures my van started. I have to let it run for at least 20 minutes before the heater will blow warm air. No heat would be just miserable on a day like this that has started off with a chilling -3 degrees.
Max had a little accident just as we were walking into school this morning, so I had to drop him off and return home to get him fresh clothes. He is potty trained finally, but we do have the occasional accident.
I had to go to Jays middle school to look over the roster for next semester, he has been bullied relentlessly this year. I called a meeting with his teachers, counselor, prinicipal and social worker to see what we could do to make his school day better, possibly avoid some of these brutal middle school kids. The Principal allowed us to look at the roster so Jay could see if there were any kids in his upcoming classes that really give him a hard time. He was able to switch a class, and was very relieved. There are fabulous people in this school district who have done so much to help both of my sons. Thank God!
I then went home... my day off. I always have such big plans for days like this, but never accomplish anything. I come home and I think my brain just shuts down.... is that possible? It seems like the time flies by so fast. Today I just sat down on the couch and tried to let the insanity get bored with me. It was calm, quiet and relaxing. These are the times that I spend in my imagination... wondering what it would be like to be Drew Barrymore or Rufus Sewells girlfriend, or a jet setting multi millionaire... where would I go first? Probably England to see the castles, maybe get lost in Ireland or tour the Vatican in Rome with my Italian friend Marcello. Imagination is a wonderful thing. Then the alarm rings. I set it for 3pm just in case I'm side tracked so I don't forget to pick the boys up from school.
I pick Jay up first, then Max at his elementary school. We go to McDonalds everyday because he will rarely eat at school and therefore is very hungry, plus I put his medicine in the ketchup on his hamburger. He has been taking prozac to help adjust his moods and it appears to be working. He is very happy today.
Tonight we took our routine trip to Walmart, where he always gets a donut with sprinkles and playdoh... EVERY NIGHT. Max only eats the sprinkles and tonight he kept looking at that donut and laughing. He'd pick a yellow sprinkle off the top, hold it softly in the palm of his hand and laugh like he'd never seen anything so funny. I wish I could see what he sees when he is overjoyed like he was tonight.
Bedtime tonight was relatively quick and painless, a rare occasion, but Max woke up at 11:30 as I was writing this and wanted to take a bath. I went in to check on him and he was sleeping in the tub. This will be a new issue, one I can't allow, for safety reasons. I will have to lock the bathroom at night from now on. I hope this was just a one time thing. I am reminded tonight that I can never let my guard down... never.
Until tomorrow...
Tuesday, January 5, 2010
Day #10
" I wish he wasn't so afraid"
Max has alot of irrational fears. I suppose that may not be all autism related as I'm without a doubt petrified of earth worms, can't even look at them. Jay used to think it was funny to chase me with them, boy I can run like the wind on ocassions like that.
I'm not sure exactly why, but Max is scared of a striped pillow case. I had forgotten because that pillow case was not used for so long. He can barely touch it and it appears as though he holds his breath when he takes it off the pillow. Once he finally got it off the pillow tonight he kicked it out of sight. Finally tonight I just threw it out. I felt bad that I'd forgotten how much it bothered him. There are many things that do, some reasonable, some not so reasonable. The vacuum for example was a terrifying thing to him for years. My Mother would have to come over and take him out of the house so I could vacuum the floor. That went on for well over a year. He was afraid of the hairdryer, wet grass, flowered fabrics, kitchen spoons (they always ended up thrown behind the stove or fridge).
The doctors office is probably the most terrifying thing of all. I dread taking him to the doctor and thankfully he rarely gets sick.
He's been wrapped in a papoose at one doctor, at the dentist it took 4 people to hold him down and the dentist had to put his head in a brace to keep it still. He seems always to be constrained by something or someone every time we go.
I took him in to get checked for an ear infection sometime ago and he wouldn't let the doctor look in his ears, he got more and more upset the more the doctor tried. Finally I told the doctor that I'd help hold on to Max so he could try to get a quick look in his ear. Max was standing by the examination table, and before I could stand up to go over to him, the doctor jumped on him like he was playing football. Max was face down on the table with his feet on the floor, the doctor was on his back, the doctors feet were off the floor, and he had his forearem over Max's neck pushing on his neck to try to hold him still. Max screamed such a terrifying scream for what seemed like an eternity. I was so shocked I told the doctor, "Stop! Thats Enough! We are done!" I left that doctors office, filed a complaint with the hospital board, and found a new doctor. Everytime I think of that day, it turns my stomach. Max is just a child, a child who does not understand why sometimes we have to go to the doctor. That horrible doctor had no business jumping on my little boy, scaring him so fiercely. He didn't even apologize.
He will not set foot back in that hospital, I have to take Jay to the doctor during school hours now, because Max refuses to get out of the van and go in. Ever since that day, he has gotten even more afraid. It is so hard as a mother to put your child in situations that they are so fearful of, I'm sure it would be so much easier if he just understood that the doctor is not there to hurt him.. with the exception of that horrible one that did. How does he trust another person in a white coat when the white coats trigger such terrible memories for him.
I wish he wasn't so afraid, I wish I could explain to him that I will be there with him and that he'd be ok. I'll be with him to keep him safe.
It bothers me that so many doctors we've visited lack the bedside manner that someone like Max really needs to feel comfortable. I think understanding autism is crucial if you are going to have patients with the diagnosis. Autistic children deserve compassion, respect and understanding just as much as anyone else.
Until tomorrow........
Max has alot of irrational fears. I suppose that may not be all autism related as I'm without a doubt petrified of earth worms, can't even look at them. Jay used to think it was funny to chase me with them, boy I can run like the wind on ocassions like that.
I'm not sure exactly why, but Max is scared of a striped pillow case. I had forgotten because that pillow case was not used for so long. He can barely touch it and it appears as though he holds his breath when he takes it off the pillow. Once he finally got it off the pillow tonight he kicked it out of sight. Finally tonight I just threw it out. I felt bad that I'd forgotten how much it bothered him. There are many things that do, some reasonable, some not so reasonable. The vacuum for example was a terrifying thing to him for years. My Mother would have to come over and take him out of the house so I could vacuum the floor. That went on for well over a year. He was afraid of the hairdryer, wet grass, flowered fabrics, kitchen spoons (they always ended up thrown behind the stove or fridge).
The doctors office is probably the most terrifying thing of all. I dread taking him to the doctor and thankfully he rarely gets sick.
He's been wrapped in a papoose at one doctor, at the dentist it took 4 people to hold him down and the dentist had to put his head in a brace to keep it still. He seems always to be constrained by something or someone every time we go.
I took him in to get checked for an ear infection sometime ago and he wouldn't let the doctor look in his ears, he got more and more upset the more the doctor tried. Finally I told the doctor that I'd help hold on to Max so he could try to get a quick look in his ear. Max was standing by the examination table, and before I could stand up to go over to him, the doctor jumped on him like he was playing football. Max was face down on the table with his feet on the floor, the doctor was on his back, the doctors feet were off the floor, and he had his forearem over Max's neck pushing on his neck to try to hold him still. Max screamed such a terrifying scream for what seemed like an eternity. I was so shocked I told the doctor, "Stop! Thats Enough! We are done!" I left that doctors office, filed a complaint with the hospital board, and found a new doctor. Everytime I think of that day, it turns my stomach. Max is just a child, a child who does not understand why sometimes we have to go to the doctor. That horrible doctor had no business jumping on my little boy, scaring him so fiercely. He didn't even apologize.
He will not set foot back in that hospital, I have to take Jay to the doctor during school hours now, because Max refuses to get out of the van and go in. Ever since that day, he has gotten even more afraid. It is so hard as a mother to put your child in situations that they are so fearful of, I'm sure it would be so much easier if he just understood that the doctor is not there to hurt him.. with the exception of that horrible one that did. How does he trust another person in a white coat when the white coats trigger such terrible memories for him.
I wish he wasn't so afraid, I wish I could explain to him that I will be there with him and that he'd be ok. I'll be with him to keep him safe.
It bothers me that so many doctors we've visited lack the bedside manner that someone like Max really needs to feel comfortable. I think understanding autism is crucial if you are going to have patients with the diagnosis. Autistic children deserve compassion, respect and understanding just as much as anyone else.
Until tomorrow........
Monday, January 4, 2010
Day #9
"If he would just talk to me, I'd never, ever stop listening."
When Max was a year old he had several words that he could say, ball, light, kitty, up, ma ma.... those words eventually vanished. By the time he was 18 months old he was completely silent. I could never put to words exactly what that feels like to a Mom. Seeing the smile fade, the facial expressions fade, the words fade. It can only be described as the most devastating feeling in the world. Like your hearts been ripped out of your chest by an invisible something and repeatedly shredded right before your eyes. You are breathless, helpless, desperate, angry...
Today I heard a woman tell her child to "Shut his mouth" at the store, and I just wanted to grab her and say "LET HIM TALK, LET HIM TALK ALL NIGHT, LET HIM TALK ABOUT ANYTHING, EVERYTHING, NOTHING! APPRECIATE THAT LITTLE VOICE THAT SPEAKS TO YOU!!"
I was so annoyed by those 3 words, because I pray everyday my son will laugh with me and talk to me... if he would just talk to me, I would never stop listening. She had a beautiful boy who just had alot to say, and I am certain if his words went away she would be crushed. I should have asked her how she would feel if he really did shut his mouth and never opened it again. I always try to never take anything for granted, I wish more people would do the same.
I have dreams at night... all the time where Max is talking to me, he sits on the foot of my bed and tells me stories, we have conversations about apple trees, sand, making grocery lists. They always seem so real, I wake up and look to see if he's sitting there at my feet.. but he never is. Those dreams make it hard to fall back to sleep because I'm so elated and they make it hard to stay awake because I want to go back to listening to him speak to me. His voice is so clear and so excited. After I have one of those dreams I can hear his voice in my head all day saying, "and Mom...."
I also have nightmares....nightmares where both of my sons vanish. No matter how far I search for them I can't find them. I call their names, Jay always answers, but I can never find him. Max doesn't answer in my nightmares. I stand there screaming for him in the darkness, in parking lots, neighborhoods, the forest but he does not answer. Its always dark outside in my nightmares. All it seems that I can do is scream for him to answer me over and over. My legs are either frozen to the ground or I am running as fast as I can but I am not moving. That is so horrifying, I wake up in tears, and my heart is beating so fast it feels like it should just jump out of my chest and keeping looking for Max. Those nightmares make me weak all day, I can't get them out of my head for days at a time. I think to myself... what if he got lost in real life, how would he ever tell anyone where he lived, or who he was, how would he tell anyone that he wanted to go home to his Mom.
When I woke up this morning he wasn't sleeping on his favorite couch, and instantly the panic overcomes me. My legs feel like they're made of lead as I go from room to room looking for him only to find him sitting in the TV room watching Babes in Toyland with the volume turned down. I said "You scared me Maximo, you have to wake me up if you want to come in here and watch television ok?" He shakes his head yes. I'd like to think he understands what I'm telling him but he shakes his head yes to everything. He doesn't ever shake his head no.
I pray to God every single night that he will help me find the way to give Max back his voice. I'd give anything, I'd give him mine if I could. God, if you're listening, Give him my voice, please.
Until tomorrow.....
When Max was a year old he had several words that he could say, ball, light, kitty, up, ma ma.... those words eventually vanished. By the time he was 18 months old he was completely silent. I could never put to words exactly what that feels like to a Mom. Seeing the smile fade, the facial expressions fade, the words fade. It can only be described as the most devastating feeling in the world. Like your hearts been ripped out of your chest by an invisible something and repeatedly shredded right before your eyes. You are breathless, helpless, desperate, angry...
Today I heard a woman tell her child to "Shut his mouth" at the store, and I just wanted to grab her and say "LET HIM TALK, LET HIM TALK ALL NIGHT, LET HIM TALK ABOUT ANYTHING, EVERYTHING, NOTHING! APPRECIATE THAT LITTLE VOICE THAT SPEAKS TO YOU!!"
I was so annoyed by those 3 words, because I pray everyday my son will laugh with me and talk to me... if he would just talk to me, I would never stop listening. She had a beautiful boy who just had alot to say, and I am certain if his words went away she would be crushed. I should have asked her how she would feel if he really did shut his mouth and never opened it again. I always try to never take anything for granted, I wish more people would do the same.
I have dreams at night... all the time where Max is talking to me, he sits on the foot of my bed and tells me stories, we have conversations about apple trees, sand, making grocery lists. They always seem so real, I wake up and look to see if he's sitting there at my feet.. but he never is. Those dreams make it hard to fall back to sleep because I'm so elated and they make it hard to stay awake because I want to go back to listening to him speak to me. His voice is so clear and so excited. After I have one of those dreams I can hear his voice in my head all day saying, "and Mom...."
I also have nightmares....nightmares where both of my sons vanish. No matter how far I search for them I can't find them. I call their names, Jay always answers, but I can never find him. Max doesn't answer in my nightmares. I stand there screaming for him in the darkness, in parking lots, neighborhoods, the forest but he does not answer. Its always dark outside in my nightmares. All it seems that I can do is scream for him to answer me over and over. My legs are either frozen to the ground or I am running as fast as I can but I am not moving. That is so horrifying, I wake up in tears, and my heart is beating so fast it feels like it should just jump out of my chest and keeping looking for Max. Those nightmares make me weak all day, I can't get them out of my head for days at a time. I think to myself... what if he got lost in real life, how would he ever tell anyone where he lived, or who he was, how would he tell anyone that he wanted to go home to his Mom.
When I woke up this morning he wasn't sleeping on his favorite couch, and instantly the panic overcomes me. My legs feel like they're made of lead as I go from room to room looking for him only to find him sitting in the TV room watching Babes in Toyland with the volume turned down. I said "You scared me Maximo, you have to wake me up if you want to come in here and watch television ok?" He shakes his head yes. I'd like to think he understands what I'm telling him but he shakes his head yes to everything. He doesn't ever shake his head no.
I pray to God every single night that he will help me find the way to give Max back his voice. I'd give anything, I'd give him mine if I could. God, if you're listening, Give him my voice, please.
Until tomorrow.....
Sunday, January 3, 2010
Day #8
"Being grateful for every little thing"
We celebrated Christmas again today with my brother and his family. What a wonderful day we had. Max was content for most of the day, although he was not interested in the sausage pizza. He was fascinated by his cousins bunk beds, he likes to jump off of them. The deep pressure when he jumps is a feeling he has loved since he was very small. I have spent many years doing joint compressions with him, it seems to calm him more than other things I have tried over time. If you'd like to know what they are and the order in which they are done, I'll gladly share, just let me know.
I was driving home tonight, amazed at the overall calmness of the day, Max only had one small melt down during our Christmas party when he snapped himself in the face with a rubber lizard tail he'd been playing with all morning. It was relatively short lived compared to many other melt downs. Most melt downs last for hours so a short one is one I can be grateful for. I am finding that being grateful for every little thing is easier than being discouraged by the things that don't go right.
I've seen so much worry, panic, saddness, depression and fear in this journey, in my life and that of many of my friends that have autistic children. Beyond that I see a new perception of life, a new appreciation for the simplist of things. For me it seems as though the things that ruin the day of most people don't even affect me.
People get angry at other drivers for driving to slow or cutting them off, but not me. People get annoyed waiting in long lines at the grocery store, but not me. Being put on hold, being stuck behind a train, getting a flat tire, noisey neighbors, just doesn't bother me. I have learned in this life whats really important, whats worth getting upset over and whats not. I can smile at the cashier if they have to get a price check and I have to wait.
Max went to sleep before midnight tonight, for that I am thankful because tomorrow he may not sleep at all. I'm thankful for his sweet glances at me, for almost a year he didn't even look at me. It is nice to know that he sees me again. I am gratful for the furniture I sit on, 3 years ago I didn't even have a kitchen table. I am thankful for this day because I spent it with family that care, and that want to understand autism. Today I didn't feel like I had to do it alone.
Until tomorrow.......
We celebrated Christmas again today with my brother and his family. What a wonderful day we had. Max was content for most of the day, although he was not interested in the sausage pizza. He was fascinated by his cousins bunk beds, he likes to jump off of them. The deep pressure when he jumps is a feeling he has loved since he was very small. I have spent many years doing joint compressions with him, it seems to calm him more than other things I have tried over time. If you'd like to know what they are and the order in which they are done, I'll gladly share, just let me know.
I was driving home tonight, amazed at the overall calmness of the day, Max only had one small melt down during our Christmas party when he snapped himself in the face with a rubber lizard tail he'd been playing with all morning. It was relatively short lived compared to many other melt downs. Most melt downs last for hours so a short one is one I can be grateful for. I am finding that being grateful for every little thing is easier than being discouraged by the things that don't go right.
I've seen so much worry, panic, saddness, depression and fear in this journey, in my life and that of many of my friends that have autistic children. Beyond that I see a new perception of life, a new appreciation for the simplist of things. For me it seems as though the things that ruin the day of most people don't even affect me.
People get angry at other drivers for driving to slow or cutting them off, but not me. People get annoyed waiting in long lines at the grocery store, but not me. Being put on hold, being stuck behind a train, getting a flat tire, noisey neighbors, just doesn't bother me. I have learned in this life whats really important, whats worth getting upset over and whats not. I can smile at the cashier if they have to get a price check and I have to wait.
Max went to sleep before midnight tonight, for that I am thankful because tomorrow he may not sleep at all. I'm thankful for his sweet glances at me, for almost a year he didn't even look at me. It is nice to know that he sees me again. I am gratful for the furniture I sit on, 3 years ago I didn't even have a kitchen table. I am thankful for this day because I spent it with family that care, and that want to understand autism. Today I didn't feel like I had to do it alone.
Until tomorrow.......
Saturday, January 2, 2010
Day # 7
"The world would be a better place if everyone had a soul sister!"
When Max was diagnosed my entire world fell apart. I spent months in shock trying to get get a grip, trying to figure out how to handle all of the new information I was being bombarded with everyday. I met some fabulous people who really made a lasting impact in my life, people I will always be grateful for, people I will love forever.
Max was a little more than 3 years old and I had gotten in touch with a Mom in Durango Colorado who also has a son with autism. I just needed someone to talk too and I had read about her book on the Internet. I called her and left a message, she returned my call a few hours later. We talked for about 4 hours on the phone that night, we laughed, we cried, we were instant friends. With every year that has passed we have gotten closer. We have been there for each other through everything. Autism, single parenthood, abject poverty, triumphs, tragedies, insanity. Through everything she has never left my side. Even though we have never lived in the same state, and only got to meet for a couple of days 5 years ago, she is the dearest friend I have ever had. For the last several years we have referred to each other as soul sister. Jay calls her "Soul Aunt", Mom calls her "Soul Daughter"
I can call her at 3am when I can't take another minute and she always answers and vice versa. Autism brought us together, but our friendship grew beyond that so long ago. She is the only person in the world that can appreciate a card filled with glitter spilling all over the place in her house, the only person who can find the humor with me in this crazy life. We have had the most interesting, fascinating, funny conversations with each other, and we laugh for hours. The only nights in all these years we don't talk on the phone is when one of us falls asleep. The world would be a better place if everyone had a soul sister, I couldn't survive without mine. We all love you SS!!
Today I wanted to share with you what holidays are like for Max... the holidays where everything in town is closed for the day. Most recently Christmas. The days preceding Christmas are full of planning, planning how to handle everything that usually transpires with Max when his routines are abruptly halted. I go to the grocery store and buy anything and everything I know he likes to eat. I always have to get a sausage pizza from Pizza Hut the day before Christmas. I spend much of Christmas Eve explaining to him that the places we go everyday will be closed and we will have to find something else to do, and I spend alot of time saying, "Please God, help Max get through the day" I can feel the pain in my chest starting to get worse by 8pm Christmas Eve because that's when the businesses start closing. I really don't know how much breathing I do all of Christmas day. I just wait and keep my fingers crossed that the volcano won't start erupting. He goes to the door with his blanket and pillow 20 times or more that day wanting to leave so we will usually visit Walgreen's as it is the only thing open. He gets more and more upset when I don't stop at McDonald's or Walmart, the darkness inside the businesses does not indicate to him they are not open. I watch him get more and more distraught as the day continues on. I always get a headache, I can feel the nervousness in me taking over by the middle of the day. By then I am just anticipating the eruption that will happen any minute.
This Christmas we drove 30 miles in the blowing snow and icy roads to get Wendy's french fries at the I 80 Truck Stop... the only place open. We drove there twice, once in the morning and once in the evening so I could give him his medicine. I sprinkle it over french fries, its the only way I can get him to take it. This Christmas he had play doh galore. It keeps him entertained when nothing else does. On Christmas day he went through 10 pounds of playdoh... yes I said 10 pounds. When the anxiety overcame him playdoh was the only thing that redirected him to a more peaceful place.
At 3am he kept looking at me saying "Wamu" over and over. I assumed that meant Walmart. Max doesn't talk so the fact that he was so intently trying to tell me something made it heartbreaking because all I could do was tell him, "Walmart is not open today, but we will go tomorrow" Still he persisted for well over an hour. I felt just sick that I spend so much time trying to get him to say something, anything, and the first time he tries as intently as he did on Christmas.... I couldn't do anything. I thought about driving to Walmart, that would only have made it worse, especially knowing he would not be able to get in the door. I then would have had to drive away, he would have been even more confused. He did not go to sleep the entire night. 5:39 am he finally gave up and closed his eyes. We woke up with that dreadful feeling erased because finally he could have his routine back. For boys like mine, the routine is so important to his peace of mind, taking it away for even one day is devastating, for him and me. So while Christmas is supposed to be a joyous occasion, it becomes a day of survival. I'm like Miss Rambo out in the jungle just trying to survive. We survived another Christmas, thank goodness. I am so glad business only comes to a screeching halt three times a year.
Until tomorrow.....
When Max was diagnosed my entire world fell apart. I spent months in shock trying to get get a grip, trying to figure out how to handle all of the new information I was being bombarded with everyday. I met some fabulous people who really made a lasting impact in my life, people I will always be grateful for, people I will love forever.
Max was a little more than 3 years old and I had gotten in touch with a Mom in Durango Colorado who also has a son with autism. I just needed someone to talk too and I had read about her book on the Internet. I called her and left a message, she returned my call a few hours later. We talked for about 4 hours on the phone that night, we laughed, we cried, we were instant friends. With every year that has passed we have gotten closer. We have been there for each other through everything. Autism, single parenthood, abject poverty, triumphs, tragedies, insanity. Through everything she has never left my side. Even though we have never lived in the same state, and only got to meet for a couple of days 5 years ago, she is the dearest friend I have ever had. For the last several years we have referred to each other as soul sister. Jay calls her "Soul Aunt", Mom calls her "Soul Daughter"
I can call her at 3am when I can't take another minute and she always answers and vice versa. Autism brought us together, but our friendship grew beyond that so long ago. She is the only person in the world that can appreciate a card filled with glitter spilling all over the place in her house, the only person who can find the humor with me in this crazy life. We have had the most interesting, fascinating, funny conversations with each other, and we laugh for hours. The only nights in all these years we don't talk on the phone is when one of us falls asleep. The world would be a better place if everyone had a soul sister, I couldn't survive without mine. We all love you SS!!
Today I wanted to share with you what holidays are like for Max... the holidays where everything in town is closed for the day. Most recently Christmas. The days preceding Christmas are full of planning, planning how to handle everything that usually transpires with Max when his routines are abruptly halted. I go to the grocery store and buy anything and everything I know he likes to eat. I always have to get a sausage pizza from Pizza Hut the day before Christmas. I spend much of Christmas Eve explaining to him that the places we go everyday will be closed and we will have to find something else to do, and I spend alot of time saying, "Please God, help Max get through the day" I can feel the pain in my chest starting to get worse by 8pm Christmas Eve because that's when the businesses start closing. I really don't know how much breathing I do all of Christmas day. I just wait and keep my fingers crossed that the volcano won't start erupting. He goes to the door with his blanket and pillow 20 times or more that day wanting to leave so we will usually visit Walgreen's as it is the only thing open. He gets more and more upset when I don't stop at McDonald's or Walmart, the darkness inside the businesses does not indicate to him they are not open. I watch him get more and more distraught as the day continues on. I always get a headache, I can feel the nervousness in me taking over by the middle of the day. By then I am just anticipating the eruption that will happen any minute.
This Christmas we drove 30 miles in the blowing snow and icy roads to get Wendy's french fries at the I 80 Truck Stop... the only place open. We drove there twice, once in the morning and once in the evening so I could give him his medicine. I sprinkle it over french fries, its the only way I can get him to take it. This Christmas he had play doh galore. It keeps him entertained when nothing else does. On Christmas day he went through 10 pounds of playdoh... yes I said 10 pounds. When the anxiety overcame him playdoh was the only thing that redirected him to a more peaceful place.
At 3am he kept looking at me saying "Wamu" over and over. I assumed that meant Walmart. Max doesn't talk so the fact that he was so intently trying to tell me something made it heartbreaking because all I could do was tell him, "Walmart is not open today, but we will go tomorrow" Still he persisted for well over an hour. I felt just sick that I spend so much time trying to get him to say something, anything, and the first time he tries as intently as he did on Christmas.... I couldn't do anything. I thought about driving to Walmart, that would only have made it worse, especially knowing he would not be able to get in the door. I then would have had to drive away, he would have been even more confused. He did not go to sleep the entire night. 5:39 am he finally gave up and closed his eyes. We woke up with that dreadful feeling erased because finally he could have his routine back. For boys like mine, the routine is so important to his peace of mind, taking it away for even one day is devastating, for him and me. So while Christmas is supposed to be a joyous occasion, it becomes a day of survival. I'm like Miss Rambo out in the jungle just trying to survive. We survived another Christmas, thank goodness. I am so glad business only comes to a screeching halt three times a year.
Until tomorrow.....
Friday, January 1, 2010
Day # 6
"I just wanted to see if it would actually work, now I know it does!"
Today I want to start off by saying from this day forward I want you all to know my boys as "Jay" he is my son with aspergers disorder, and "Max" my son who is nonverbal with autism. My little angel Max isn't so little. He actually towers over my Mom and sister at 11 years old and 5'3. He still has a few inches before he catches up with me. Jay is 14, 5'11 and is now taller than most of his 8th grade class, to him I'm a shrimp. I have so many nicknames for them both, like Bubs, Hootin Nootin, Little Merry Sunshine, Maximo, the list goes on and on. I'll only confuse any who reads this if I don't just leave the nick names out. So Jay and Max only from now on.
Max woke up this morning at 5:30am after having gone to sleep at 2:15am. He did go back to sleep thankfully, but was up and down for a few hours so the restful sleep didn't ever happen. Its hard to really sleep when he comes running from the kitchen with the dog in tow, trying to ride him like a horse. Max loves horses, and one of our dogs is pretty big and adores Max, follows him everywhere and will let him try to sit on his back before he takes off running. This will go on forever!! But it is one of the only times in a day that I hear him laugh. Its music to my ears.
Max fell asleep at 12:50am, which is good compared to last night when he went to sleep at 2:15am. That means he will probably be up by 4am ready to play in the bath tub, or take a ride. Its so hard to stay awake at 4am let alone get motivated to go do anything at 6 or 7am.
Max slammed the front door for about 15 minutes straight this evening before moving on to the bedroom door. I thought initially that he was having a melt down, but it appears he is listening to the sound of the door slamming, and he has to "slam it" just right before he can walk away from it. If anyone makes any noise during these episodes he has to start all over or he'll fall apart. His most recent self abusive behavior is slamming his wrists together as hard as he can. Try it.... slam your wrists together as hard as you can. It really hurts.
I realized today as I was baking biscuits, doing the dishes, folding the laundry... and starting new loads, watching Max's water level in the bathtub, holding the dogs leash with one hand, cleaning the stove top, wiping the counters, putting on mascara and figuring out my bills..... I was doing it all at the same time. Mega Multi tasking. I realized I have to do everything at the same time if I want to get anything done at all around the house. Once Max is out of the water, the race begins.
No wonder I don't get anything done. If your home really is a reflection of your life then that means mine is a mess. I wish there was a house cleaning fairy that could come wave her wand over my house a few times a day.
Tonight before I go I have to tell you the funniest thing. I'm sure you all remember the movie "A Christmas Story"..... well Jay had gone outside to put a water balloon out in the snow tonight, hoping tomorrow it will be a perfect ice ball. He has OCD on top of aspergers so he very easily can get obsessed with things. If we don't talk about it and I can't redirect him he perseverates over whatever the problem, question or item is. He's been an obsessive collector of various things his entire life. One summer we had 100's of butterflies living in our house because he couldn't stop catching them. Various things consume him. Usually they pass relatively quickly because another is soon to follow.
Tonight I heard Jay calling for me from the front porch. He said "My tongue is stuck on the gutter" I didn't believe him. Moments later he walked in the house with his tongue dripping blood. I was so shocked. He looked over at me as I stood up from the kitchen table and simply said, "I just wanted to see if it would actually work, now I know it does". Yes that's right, Jay stuck his tongue on the metal gutter and it froze to it. Some of the flesh of his tongue is still on the gutter. We must have laughed for a half hour. So everyone out there.... it really works, don't let curiosity get the best of you like Jay did.
I better go to sleep for now. You never know what time the rodeo is going to start.
Until tomorrow!
Today I want to start off by saying from this day forward I want you all to know my boys as "Jay" he is my son with aspergers disorder, and "Max" my son who is nonverbal with autism. My little angel Max isn't so little. He actually towers over my Mom and sister at 11 years old and 5'3. He still has a few inches before he catches up with me. Jay is 14, 5'11 and is now taller than most of his 8th grade class, to him I'm a shrimp. I have so many nicknames for them both, like Bubs, Hootin Nootin, Little Merry Sunshine, Maximo, the list goes on and on. I'll only confuse any who reads this if I don't just leave the nick names out. So Jay and Max only from now on.
Max woke up this morning at 5:30am after having gone to sleep at 2:15am. He did go back to sleep thankfully, but was up and down for a few hours so the restful sleep didn't ever happen. Its hard to really sleep when he comes running from the kitchen with the dog in tow, trying to ride him like a horse. Max loves horses, and one of our dogs is pretty big and adores Max, follows him everywhere and will let him try to sit on his back before he takes off running. This will go on forever!! But it is one of the only times in a day that I hear him laugh. Its music to my ears.
Max fell asleep at 12:50am, which is good compared to last night when he went to sleep at 2:15am. That means he will probably be up by 4am ready to play in the bath tub, or take a ride. Its so hard to stay awake at 4am let alone get motivated to go do anything at 6 or 7am.
Max slammed the front door for about 15 minutes straight this evening before moving on to the bedroom door. I thought initially that he was having a melt down, but it appears he is listening to the sound of the door slamming, and he has to "slam it" just right before he can walk away from it. If anyone makes any noise during these episodes he has to start all over or he'll fall apart. His most recent self abusive behavior is slamming his wrists together as hard as he can. Try it.... slam your wrists together as hard as you can. It really hurts.
I realized today as I was baking biscuits, doing the dishes, folding the laundry... and starting new loads, watching Max's water level in the bathtub, holding the dogs leash with one hand, cleaning the stove top, wiping the counters, putting on mascara and figuring out my bills..... I was doing it all at the same time. Mega Multi tasking. I realized I have to do everything at the same time if I want to get anything done at all around the house. Once Max is out of the water, the race begins.
No wonder I don't get anything done. If your home really is a reflection of your life then that means mine is a mess. I wish there was a house cleaning fairy that could come wave her wand over my house a few times a day.
Tonight before I go I have to tell you the funniest thing. I'm sure you all remember the movie "A Christmas Story"..... well Jay had gone outside to put a water balloon out in the snow tonight, hoping tomorrow it will be a perfect ice ball. He has OCD on top of aspergers so he very easily can get obsessed with things. If we don't talk about it and I can't redirect him he perseverates over whatever the problem, question or item is. He's been an obsessive collector of various things his entire life. One summer we had 100's of butterflies living in our house because he couldn't stop catching them. Various things consume him. Usually they pass relatively quickly because another is soon to follow.
Tonight I heard Jay calling for me from the front porch. He said "My tongue is stuck on the gutter" I didn't believe him. Moments later he walked in the house with his tongue dripping blood. I was so shocked. He looked over at me as I stood up from the kitchen table and simply said, "I just wanted to see if it would actually work, now I know it does". Yes that's right, Jay stuck his tongue on the metal gutter and it froze to it. Some of the flesh of his tongue is still on the gutter. We must have laughed for a half hour. So everyone out there.... it really works, don't let curiosity get the best of you like Jay did.
I better go to sleep for now. You never know what time the rodeo is going to start.
Until tomorrow!
Day #5
"Eating pancakes that were oozing with syrup!"
I forgot that today was New Years Eve. I wondered several times today why everyone was asking me what I was doing tonight. Why were they interested? They all know I don't go out. Then the "Dah!!" moment. Its the biggest party night of the year. I always loved New Years Eve, I think I am confetti's biggest fan, I love it.
I was trying to remember the last time I went out, I do recall sadly how long ago it was.
In the last 8 years, thats 2920 days.... I have went out twice. I feel like Charlie Bucket from Willie Wonka and the Chocolate Factory must have felt when the teacher asked him how many Wonka Bars he'd opened. Hmmmm.... maybe the next time I go out I'll find the golden ticket, if not I'd be happy with the chocolate.
I remember dancing the night away. Meeting friends at the all night diners and eating pancakes that were oozing with syrup. Laughing with the girls about the terrible pick up lines, and ahhhhh sleeping till noon. Of course I was much younger then, but it still sounds like fun.
I suppose everything changes over time, I can accept that. When you become a parent you get to be a kid again, you get to go back in time in a way. You look forward to Santa Claus, The Easter Bunny, Halloween, Birthday parties. All those things that make your childhood memorable, you get to do all over again, remembering the joy you felt and seeing the same joy in your childrens faces.
Imagine instead of the magic of Santa, the excitement of Easter, the thrill of collecting as much loot door to door on Halloween that your child could carry, you see nothing but fear and confusion, tears and resistance.
My son doesn't know Santa Claus, at least I think he doesn't. Instead of shredding the presents on Christmas morning, he'd rather be away from all the laughter and family. He doesn't want to open presents or eat Christmas cookies, he's never ate a Christmas cookie, or hung his stocking, or looked out the window for Santa, never wrote a letter to send to the North Pole. I pray every Christmas Eve that I will see the excitement in his face when he wakes up on Christmas morning and see's all the presents under the tree.... instead he walks right past the tree, into the kitchen to get a drink, then take a bath. I sit on the couch feeling like someone just deflated me. I put on my happy face because big brother loves the presents, I can be happy that he is happy.
I wonder what my little angel thinks about all these wonderful things he see's. Does he know its a special day? Does he know there are alot of special days and special things thought up just for children?
Tonight we watched the ball drop in NYC on television, he liked that because the ball was bright and ticker tape was flitting across the screen. I wonder if he knows what New Years Day is.
My little angel came out into the kitchen with his pillow and blanket at 1:30am wanting to take a ride. I drove him around town, he seems to like to look at the snow drifts on the sides of the road. I drove past Christmas lights that stil hang on peoples houses, he likes the Christmas lights, anything thats bright, twinkles and flashes. Finally at 2:10 am he was sleeping, something I need to be doing.
My New Years Resolution
TO BELIEVE IN MIRACLES!
Until Tomorrow....
I forgot that today was New Years Eve. I wondered several times today why everyone was asking me what I was doing tonight. Why were they interested? They all know I don't go out. Then the "Dah!!" moment. Its the biggest party night of the year. I always loved New Years Eve, I think I am confetti's biggest fan, I love it.
I was trying to remember the last time I went out, I do recall sadly how long ago it was.
In the last 8 years, thats 2920 days.... I have went out twice. I feel like Charlie Bucket from Willie Wonka and the Chocolate Factory must have felt when the teacher asked him how many Wonka Bars he'd opened. Hmmmm.... maybe the next time I go out I'll find the golden ticket, if not I'd be happy with the chocolate.
I remember dancing the night away. Meeting friends at the all night diners and eating pancakes that were oozing with syrup. Laughing with the girls about the terrible pick up lines, and ahhhhh sleeping till noon. Of course I was much younger then, but it still sounds like fun.
I suppose everything changes over time, I can accept that. When you become a parent you get to be a kid again, you get to go back in time in a way. You look forward to Santa Claus, The Easter Bunny, Halloween, Birthday parties. All those things that make your childhood memorable, you get to do all over again, remembering the joy you felt and seeing the same joy in your childrens faces.
Imagine instead of the magic of Santa, the excitement of Easter, the thrill of collecting as much loot door to door on Halloween that your child could carry, you see nothing but fear and confusion, tears and resistance.
My son doesn't know Santa Claus, at least I think he doesn't. Instead of shredding the presents on Christmas morning, he'd rather be away from all the laughter and family. He doesn't want to open presents or eat Christmas cookies, he's never ate a Christmas cookie, or hung his stocking, or looked out the window for Santa, never wrote a letter to send to the North Pole. I pray every Christmas Eve that I will see the excitement in his face when he wakes up on Christmas morning and see's all the presents under the tree.... instead he walks right past the tree, into the kitchen to get a drink, then take a bath. I sit on the couch feeling like someone just deflated me. I put on my happy face because big brother loves the presents, I can be happy that he is happy.
I wonder what my little angel thinks about all these wonderful things he see's. Does he know its a special day? Does he know there are alot of special days and special things thought up just for children?
Tonight we watched the ball drop in NYC on television, he liked that because the ball was bright and ticker tape was flitting across the screen. I wonder if he knows what New Years Day is.
My little angel came out into the kitchen with his pillow and blanket at 1:30am wanting to take a ride. I drove him around town, he seems to like to look at the snow drifts on the sides of the road. I drove past Christmas lights that stil hang on peoples houses, he likes the Christmas lights, anything thats bright, twinkles and flashes. Finally at 2:10 am he was sleeping, something I need to be doing.
My New Years Resolution
TO BELIEVE IN MIRACLES!
Until Tomorrow....
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