"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...
Wednesday, January 6, 2010
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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