I'm not as fast as a go kart...
We were playing outside today, Max in his mud and Jay teaching himself how to rebuild engines. It amazes me that Jay can take small engines apart and put them back together, and make things work that haven't worked for years.
Max spotted Jays go kart in the yard and sat down in it. He doesn't like it when the engine is turned on though. Jay and I were trying to push him through the yard and teach him how to turn the steering wheel.
We figured that as long as Max didn't put his foot on the gas pedal that it would be safe to turn it on. Surprisingly Max was not afraid, he laughed and put his arms up in the air, his face glowing with delight the entire time. We pushed him for about 45 minutes and he'd turn the steering wheel on his own, he looked so proud of himself. Then suddenly he took off like a bat outta hell, maneuvering himself between trees, Jay running after him, me running after him. I'm yelling "CATCH HIM!!" Jay finally does, I'm horrified and my heart is beating so fast it hurts.... and Max? Well, he thinks its funny, he's laughing so hard his face is bright red. He wants to go again. Apparently after the engine on this go kart warms up it will take off on its own, something we never knew because Jay has only ever driven it as you normally would... get in, put on the seat belt, start the engine, foot on gas.... not like we did today. It was a bad idea to not show Max where the brake pedal was, I didn't plan on leaving his side, but when you have a go kart with a mind of its own, learning how to stop is a good thing. After that I decided that from now on, the engine would be OFF and we would just push him, or maybe someday when my money tree starts producing money I could get Max his own go kart that is operated with pedals like a bike or a remote control that I could control. He could still be independent, but I could still make sure he was safe. There really isn't a dull moment around here sometimes.
Until tomorrow
Tuesday, April 27, 2010
Day #25
Water Towers aren't always just water towers...
I had a revelation today, well tonight actually as I was driving down the highway headed home. The water tower sits off in the distance and lights below kind of illuminate it in the darkness. For some reason that water tower always makes me think of someone that was very special to me many years ago. Well he still is despite the fact that he has long since moved on from me. I met "Bob" many years ago not long before Max's diagnosis. I don't know what drove me away from him, if it was just fear, or if I just knew that my life would soon take a turn down a road I knew would be hard to navigate. All of these years little things have brought memories of my time with him back. I suppose I'm not good at letting go, but there was always something about him that was different, something that made letting him go more difficult than any one else.
Bob was the last relationship, however brief it may have been, before Max's diagnosis, before my life changed forever. He is my last window into my normal life, my old life, my less complicated life. When I knew him I was just a single Mom, there wasn't much drama really.
So letting go of him is probably something I will never do... I don't really want too. He reminds me of how things used to be and that is priceless to me.
That water tower off in the distance is like my old life off in the distance, I can still see it from wherever I am, but I can't reach it. Its lit up at night like memories light up my night sometimes.
So Bob.... Thank you for being my light in the darkness, I will always love and remember you fondly, and treasure the days with you from so long ago.
Until tomorrow......
I had a revelation today, well tonight actually as I was driving down the highway headed home. The water tower sits off in the distance and lights below kind of illuminate it in the darkness. For some reason that water tower always makes me think of someone that was very special to me many years ago. Well he still is despite the fact that he has long since moved on from me. I met "Bob" many years ago not long before Max's diagnosis. I don't know what drove me away from him, if it was just fear, or if I just knew that my life would soon take a turn down a road I knew would be hard to navigate. All of these years little things have brought memories of my time with him back. I suppose I'm not good at letting go, but there was always something about him that was different, something that made letting him go more difficult than any one else.
Bob was the last relationship, however brief it may have been, before Max's diagnosis, before my life changed forever. He is my last window into my normal life, my old life, my less complicated life. When I knew him I was just a single Mom, there wasn't much drama really.
So letting go of him is probably something I will never do... I don't really want too. He reminds me of how things used to be and that is priceless to me.
That water tower off in the distance is like my old life off in the distance, I can still see it from wherever I am, but I can't reach it. Its lit up at night like memories light up my night sometimes.
So Bob.... Thank you for being my light in the darkness, I will always love and remember you fondly, and treasure the days with you from so long ago.
Until tomorrow......
Day #24
Ok.... lets try this again.
Its been a long time... my week or so turned into months, sorry. But I've been writing in my trusty notebook for days so I'll put as many of them down here today as I can... I have one hour.
This has been a day that will probably go down in my history as one of the most embarrassing days of my 40 years, and believe me there have been many. I think I honestly found out today what real exhaustion really means, I always thought I knew but now I KNOW I do.
I don't remember what time I finally went to sleep last night but amazingly did get up on time to get the boys off to school. I came back home and sat down in the living room, my day off... a day to regroup. I fell asleep, I never do that, at least not on purpose. I woke up to the alarm going off at 11:30. I had forgotten that I had already taken the kids to school, in my mind we had overslept. I peeked in the room where Max had fell asleep and he wasn't there, so I looked in the bathroom.. not there either.. PANIC takes over. I realize the front door is locked so I thought, OH MY GOSH, he got out and couldn't get back in. I looked out the back door, he wasn't there where he usually plays, by then my heart was in my stomach and my whole body was shaking, I could barely breathe, or think straight. I went running through the yard screaming his name, over and over and over, no answer. Terror took over, everything that I always feared was happening. I ran back inside to look again, and it hit me..... You dummy, you already took them to school.
For the rest of the day I was shaken up, the thought of that really happening has always been so frightening to me. Thankfully I lived it, but it wasn't really happening. I am certain of a couple things now.... my neighbors without a doubt must think I am totally out of my mind, my dogs think I'm nuts, and exhaustion is NOT a pleasant thing.
Until tomorrow....
Its been a long time... my week or so turned into months, sorry. But I've been writing in my trusty notebook for days so I'll put as many of them down here today as I can... I have one hour.
This has been a day that will probably go down in my history as one of the most embarrassing days of my 40 years, and believe me there have been many. I think I honestly found out today what real exhaustion really means, I always thought I knew but now I KNOW I do.
I don't remember what time I finally went to sleep last night but amazingly did get up on time to get the boys off to school. I came back home and sat down in the living room, my day off... a day to regroup. I fell asleep, I never do that, at least not on purpose. I woke up to the alarm going off at 11:30. I had forgotten that I had already taken the kids to school, in my mind we had overslept. I peeked in the room where Max had fell asleep and he wasn't there, so I looked in the bathroom.. not there either.. PANIC takes over. I realize the front door is locked so I thought, OH MY GOSH, he got out and couldn't get back in. I looked out the back door, he wasn't there where he usually plays, by then my heart was in my stomach and my whole body was shaking, I could barely breathe, or think straight. I went running through the yard screaming his name, over and over and over, no answer. Terror took over, everything that I always feared was happening. I ran back inside to look again, and it hit me..... You dummy, you already took them to school.
For the rest of the day I was shaken up, the thought of that really happening has always been so frightening to me. Thankfully I lived it, but it wasn't really happening. I am certain of a couple things now.... my neighbors without a doubt must think I am totally out of my mind, my dogs think I'm nuts, and exhaustion is NOT a pleasant thing.
Until tomorrow....
Sunday, February 21, 2010
Day #23.....
I am so sorry I haven't been able to write lately. My computer has crashed, and like they sing on the "Phantom of the Opera"..... "this is the point of no return" It will probably be another week before I can replace it. So please bear with me!
I will be back then to catch you all up!
Until then.....
I will be back then to catch you all up!
Until then.....
Tuesday, February 2, 2010
Day #22
Hello everyone,
What an interesting night we had in our little world. Max gave himself another bloody nose, he thinks its funny. I frantically race to the sink to wash his hands and face off while he giggles uncontrollably. He looked like he'd been playing with finger paints when he came to me laughing. I can't say for sure if he was the cause of this bloody nose, but the first on he ever got was self inflicted because he was picking his nose. Yes, I know its not a good habit to start.... Something we are working on fixing. He knows better because as soon as I look over at him he puts his hand down... until I look away. I said, "Stop that, your nose will bleed again!" He just grins at me. What I can't figure out is why it doesn't scare him like so many other things that happen out of the ordinary.
There's never a dull moment around here most days. Max's most recent obsession is Lady GaGa. Her new song is called Bad Romance. We listened to it 28 times yesterday. Now its stuck in my head like that song "Aruba" from the 80's. I've been walking around all day saying La La ooo La La Ra Ra ooo La La Ga Ga ooo La La blah blah blah.... If only the important things of my days could be set to music, maybe I'd never forget them. "La La schools out at 2, Ra Ra, respite at 4" hmmm doesn't seem as catchy though.
I am going to start sharing with you all stories of some of my friends that have autistic children. There are so many kids that struggle and I think what they go through is worth writing about. I may have mentioned that in an earlier post, if so I apologize... but soon I will be putting those together. I have a friend here in my town that has 3 autistic sons. Many of you have told me that you don't know how I do it.... I don't know how she and her husband do it. Keep checking back for that it may be a while still before I get a chance to sit down with them.
I'll be back tonight to write again.. Thanks again for reading!
Until tonight....
What an interesting night we had in our little world. Max gave himself another bloody nose, he thinks its funny. I frantically race to the sink to wash his hands and face off while he giggles uncontrollably. He looked like he'd been playing with finger paints when he came to me laughing. I can't say for sure if he was the cause of this bloody nose, but the first on he ever got was self inflicted because he was picking his nose. Yes, I know its not a good habit to start.... Something we are working on fixing. He knows better because as soon as I look over at him he puts his hand down... until I look away. I said, "Stop that, your nose will bleed again!" He just grins at me. What I can't figure out is why it doesn't scare him like so many other things that happen out of the ordinary.
There's never a dull moment around here most days. Max's most recent obsession is Lady GaGa. Her new song is called Bad Romance. We listened to it 28 times yesterday. Now its stuck in my head like that song "Aruba" from the 80's. I've been walking around all day saying La La ooo La La Ra Ra ooo La La Ga Ga ooo La La blah blah blah.... If only the important things of my days could be set to music, maybe I'd never forget them. "La La schools out at 2, Ra Ra, respite at 4" hmmm doesn't seem as catchy though.
I am going to start sharing with you all stories of some of my friends that have autistic children. There are so many kids that struggle and I think what they go through is worth writing about. I may have mentioned that in an earlier post, if so I apologize... but soon I will be putting those together. I have a friend here in my town that has 3 autistic sons. Many of you have told me that you don't know how I do it.... I don't know how she and her husband do it. Keep checking back for that it may be a while still before I get a chance to sit down with them.
I'll be back tonight to write again.. Thanks again for reading!
Until tonight....
Monday, January 25, 2010
Day #21?
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....
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....
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....
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