I wanted to post something upbeat and happy today. Sammy had an awesome morning, smiles and school YAY. Then he came home with a note that he attacked someone on the bus. Well, I refuse to deal with it this very moment. I already called the school , phone conference tomorrow first thing. So for now, I will still write my happy post damn it! Just try and stop me
I was inspired a bit by my friends list over at Food Good Laundry Bad and I decided I need a list too.
The Things I have learned from Sammy
1. It takes 7 minutes flat to eat three pounds of jelly beans while hiding in a closet
2. Anything can be a weapon,yes even broccoli
3. Large stock pot lids make awesome captain america shields, and the paint comes right off with a scrubbie
4. I have more patience than I ever thought possible
5. It only takes seconds to connect and some days that is all you get.
6. Predictability doesn't always mean the same thing every day, sometimes you only need a fair warning.
7. When a 5lb bag of flour falls from a 4 foot tall counter the entire room WILL be covered in a fine layer of flour.
8. Action figures melt in a stove that is preheating and that plastic takes forever to come off.
9. Just because something looks "normal" doesn't mean it is
10. Some things in life just happen and that has to be ok
11. If you can think outside the box you will accomplish so much more
12. Just because your expecting something doesn't mean your ready.
13. Sometimes your heart keeps fighting even when the rest of you refuses.
14. It is possible to love so much it hurts, to need so much you can barely think and to cry so hard you can't breath and sometimes that has to be OK.
15. Summer time rain showers can lift anyone's spirits
16. All life is special, yes even ants and worms. they all have a place.
17. Confetti + Sneeze = uncontrollable laughter
18. Butterfly kisses are magical.
19. Little girls aren't the only ones that really love pink glitter
20. Nothing in life is a guarantee so smile more, laugh more and try not to worry so much
Tuesday, October 18, 2011
learning curve
Saturday, October 15, 2011
October 15.
Pregnancy and Birth Loss Remembrance Day
You are not alone. I desperately wish that this club did not exist. That there was no need for it. That babies never died. It does happen, and no matter what each of our losses are important. There is a fantastic group on facebook where you can get some support

My darling Emma, how I miss you so. some days it all but takes the breath from me. <3 momma
You are not alone. I desperately wish that this club did not exist. That there was no need for it. That babies never died. It does happen, and no matter what each of our losses are important. There is a fantastic group on facebook where you can get some support

My darling Emma, how I miss you so. some days it all but takes the breath from me. <3 momma
Friday, October 14, 2011
Sam Says
I asked Sammy if there is anything he would like me to put on his blog. I won't edit this and it will be only what he tells me.. OK *breath mom and release control*
I am Sam. I am Autistic ,my friends think I am not autism...autistic. I have 50 children in my friends book I read to my friends a lot of times I sometimes when they fall I help them get up and they say thank you Sam and get up. Maybe next time I don't need you help.maybe next time. the end. That's it that period that is it .it.it period it. the end
Every once in a while I like just asking Sam to do these things. To help him see there is more than just our house and school in the world. It lets me peek inside his head and what he thinks. We told Sammy this year that he does have autism. That it means he has strengths and weaknesses and it means his brain works different than others. He has since tried to use having autism as an excuse. He hit his brother and said "I can't help it I has autism" I'm not sure where he got this from but someone let him get away with something. I am sure it was probably a neighbor kid, because they are always asking what Sammy really understands and what is ok for Sammy to do.
I am Sam. I am Autistic ,my friends think I am not autism...autistic. I have 50 children in my friends book I read to my friends a lot of times I sometimes when they fall I help them get up and they say thank you Sam and get up. Maybe next time I don't need you help.maybe next time. the end. That's it that period that is it .it.it period it. the end
Every once in a while I like just asking Sam to do these things. To help him see there is more than just our house and school in the world. It lets me peek inside his head and what he thinks. We told Sammy this year that he does have autism. That it means he has strengths and weaknesses and it means his brain works different than others. He has since tried to use having autism as an excuse. He hit his brother and said "I can't help it I has autism" I'm not sure where he got this from but someone let him get away with something. I am sure it was probably a neighbor kid, because they are always asking what Sammy really understands and what is ok for Sammy to do.
Thursday, October 13, 2011
Dear Sir or Madam
Dear Sir,
While I understand full well the obnoxious noise my son is making I do not particularly care if it bothers you. You see it bothers me too, but neither of us can stop it. He has as much right to be in the grocery store as you do. Please understand that this in no way entitles you to roll your eyes and whisper what a bad parent I am. Come spend a day with us, then make your judgement.
Dear Sir, When you say things like "better you than me" your right. Congratulations.
Dear Madam, Before you whisper to your husband that I cannot handle my children and shouldn't have had another one, please check your hearing aid. Everyone in isle three heard you.
Dear Sir, I did not share with you my sons autism because I wanted pity. I told you because your child is trying to talk to him and being ignored. Your child is getting upset at this. Perhaps if you concentrated on your child and not what mine was doing we could fix this.
Dear Madam, My son being autistic does not magically make him a genius any more than asking stupid questions makes you a game show host.
Dear Madam, Please let me decide if we can handle it. What I can handle is none of your business and your opinion does not matter
Dear Sir, When I ask my son to look towards you when speaking , do not tell him it's fine. He has been working very hard to be more social and he needs these skills.
Dear Madam, If you are uncomfortable with my child playing with yours then by all means leave the play ground. My child is autistic, not dying or diseased. Your child will not catch what he has.
Dear Madam, Behavior chart means just that BEHAVIOR. That does not mean turning in your paper. While I can truly appreciate your wanting to teach independence to your second grade class,my son does have autism. He still struggles with hanging up his coat, eating with utensils and remembering which stop to get off the bus. Lets work on those first.OK?
Dear Sir, I am as offended by the overpowering smell of your cologne and your back hair peeking of your shirt as you are with my son hopping up and down saying the funny thing he smells burns his nose. That would be your cologne creating this . Thanks again.
Dear Sir, When you say things like "better you than me" your right. Congratulations.
Dear Madam, Before you whisper to your husband that I cannot handle my children and shouldn't have had another one, please check your hearing aid. Everyone in isle three heard you.
Dear Sir, I did not share with you my sons autism because I wanted pity. I told you because your child is trying to talk to him and being ignored. Your child is getting upset at this. Perhaps if you concentrated on your child and not what mine was doing we could fix this.
Dear Madam, My son being autistic does not magically make him a genius any more than asking stupid questions makes you a game show host.
Dear Madam, Please let me decide if we can handle it. What I can handle is none of your business and your opinion does not matter
Dear Sir, When I ask my son to look towards you when speaking , do not tell him it's fine. He has been working very hard to be more social and he needs these skills.
Dear Madam, If you are uncomfortable with my child playing with yours then by all means leave the play ground. My child is autistic, not dying or diseased. Your child will not catch what he has.
Dear Madam, Behavior chart means just that BEHAVIOR. That does not mean turning in your paper. While I can truly appreciate your wanting to teach independence to your second grade class,my son does have autism. He still struggles with hanging up his coat, eating with utensils and remembering which stop to get off the bus. Lets work on those first.OK?
Dear Sir, I am as offended by the overpowering smell of your cologne and your back hair peeking of your shirt as you are with my son hopping up and down saying the funny thing he smells burns his nose. That would be your cologne creating this . Thanks again.
Wednesday, October 12, 2011
Fighting to Breath
So I decided to link up with for this 
When the weeks are like this I feel like I am stuck in quicksand. I wonder if the world around me can see the toll being a mother to children with autism has taken on me. I feel as though my life is some form of algebraic word problem "If Sammy ages as half speed and Mother ages at three times Sammy speed how fast does Mother age?" The answer is too fast.
there is a blog I follow, A Diary of a Mom and it helps me. I don't feel as alone when I read things like this post here and this post too. I have them on quasi-speed dial and re-read them on days like today. Days when I feel like I have climbed backwards into some dark sink hole. I try to keep things light here, I don't ever want anyone to think I feel hopeless or over stressed. I don't want anyone to think I don't love my sons with all I am and all I have. I do. He is forever intertwined into the fibers of my being, wound so tightly around me that you cannot tell where he ends and I begin. Perhaps that is why this is so hard for me? Perhaps I am too close? Can I be too close? In order to reach him I have to be close, constant and unwavering. I can't be near and far at the same time, just ask Grover. He did entire dialog about that on Sesame Street
However...today I just can't. I haven't written in a few days simply because I couldn't muster the energy to put on a happy face and pretend like things are OK. They aren't and I am scared to death because I have no clue what to do. So if you are looking for a happy "i love my life" kind of post here are some suggestions
accomplishments
happy
feel free to wander backwards to untagged posts to all sorts of good stuff
Its been a long few weeks and it isn't getting better. Anxiety brings this poor child to his knees. Sammy is so much like a stick of dynamite with the fuse always lit. The level of anxiety determining the speed in which the fuse burns. It fuels the fire, creates the burn and destroys any progress. I hate it.
Sunday, it all fell apart. We went to church, Sammy ended up restrained in the crying room. He was trying to put his head through the door. I couldn't even get him outside. I couldn't move him, so I sat down with him, held him tight, and let him scream and flail safely. He was clawing at his face and arms, screaming and yelling. Nothing I could do would soothe him. I wrapped him up in my arms. The same arms that held him and rocked him as a baby now hold him hostage. He hates to be restrained but some times that is all I can do. I have to keep him safe.
It's now Wednesday. Today he was carried to the bus stop because he refused to go. His socks upset him and he refused to put on his socks. His behavior at school is getting progressively worse, and the behavior to get him to school is as well. he comes home and explodes like a bomb. The entire week he has been going off like a loose cannon. each time worse than the one before. There is nothing creating the issues that I can change. Unless I can get God to keep it warm all year long. The weather change, the back to school, the teacher he doesn't like, the shorter days, the longer nights, and the dryer air all contribute to my boy and his melt downs. I have no control, I have no clue, and I am tired.
I am so tired. I use to compare this feeling to having spilled soup in your lap. I don't even like soup. I feel burned out and frustrated. I am tired and alone and I don't want to do this anymore. What was supposed to be respite turned into chaos and I am at the end of my rope. I am going to have a battle on my hands with his teacher (more about that another time) and a battle here. Sometimes I just don't want to fight anymore. I just can't breath because the air around me is so heavy. It feels like 100% humidity in an oven or being underwater.
I wonder if people can see it. Even people who don't read this blog have noticed. I miss life before autism. I miss being able to go out as a family and enjoy the whole day. I miss going for car rides without disaster. I miss being able to make one meal with no gluten free options. I miss being able to make and eat whatever the hell I want without worrying if Sammy is going to steal it and eat it. I miss being me, feeling good about myself and having "good mom" moments. I don't feel like a good mom. I feel like I failed. I am having a pity party and I apologize. I just miss the parent I was before it revolved around autism. I miss being carefree, because here, in this house, carefree can never happen again.
Tomorrow, I will wake up. I will smile, put my feet on the floor and do it all over again. Because I love him. Because he deserves it, and because I know if I don't no one else will. He didn't ask for this any more than I did. Nothing changes how much I love him, I just wish I could figure out how to HELP him.

When the weeks are like this I feel like I am stuck in quicksand. I wonder if the world around me can see the toll being a mother to children with autism has taken on me. I feel as though my life is some form of algebraic word problem "If Sammy ages as half speed and Mother ages at three times Sammy speed how fast does Mother age?" The answer is too fast.
there is a blog I follow, A Diary of a Mom and it helps me. I don't feel as alone when I read things like this post here and this post too. I have them on quasi-speed dial and re-read them on days like today. Days when I feel like I have climbed backwards into some dark sink hole. I try to keep things light here, I don't ever want anyone to think I feel hopeless or over stressed. I don't want anyone to think I don't love my sons with all I am and all I have. I do. He is forever intertwined into the fibers of my being, wound so tightly around me that you cannot tell where he ends and I begin. Perhaps that is why this is so hard for me? Perhaps I am too close? Can I be too close? In order to reach him I have to be close, constant and unwavering. I can't be near and far at the same time, just ask Grover. He did entire dialog about that on Sesame Street
However...today I just can't. I haven't written in a few days simply because I couldn't muster the energy to put on a happy face and pretend like things are OK. They aren't and I am scared to death because I have no clue what to do. So if you are looking for a happy "i love my life" kind of post here are some suggestions
accomplishments
happy
feel free to wander backwards to untagged posts to all sorts of good stuff
Its been a long few weeks and it isn't getting better. Anxiety brings this poor child to his knees. Sammy is so much like a stick of dynamite with the fuse always lit. The level of anxiety determining the speed in which the fuse burns. It fuels the fire, creates the burn and destroys any progress. I hate it.
Sunday, it all fell apart. We went to church, Sammy ended up restrained in the crying room. He was trying to put his head through the door. I couldn't even get him outside. I couldn't move him, so I sat down with him, held him tight, and let him scream and flail safely. He was clawing at his face and arms, screaming and yelling. Nothing I could do would soothe him. I wrapped him up in my arms. The same arms that held him and rocked him as a baby now hold him hostage. He hates to be restrained but some times that is all I can do. I have to keep him safe.
It's now Wednesday. Today he was carried to the bus stop because he refused to go. His socks upset him and he refused to put on his socks. His behavior at school is getting progressively worse, and the behavior to get him to school is as well. he comes home and explodes like a bomb. The entire week he has been going off like a loose cannon. each time worse than the one before. There is nothing creating the issues that I can change. Unless I can get God to keep it warm all year long. The weather change, the back to school, the teacher he doesn't like, the shorter days, the longer nights, and the dryer air all contribute to my boy and his melt downs. I have no control, I have no clue, and I am tired.
I am so tired. I use to compare this feeling to having spilled soup in your lap. I don't even like soup. I feel burned out and frustrated. I am tired and alone and I don't want to do this anymore. What was supposed to be respite turned into chaos and I am at the end of my rope. I am going to have a battle on my hands with his teacher (more about that another time) and a battle here. Sometimes I just don't want to fight anymore. I just can't breath because the air around me is so heavy. It feels like 100% humidity in an oven or being underwater.
I wonder if people can see it. Even people who don't read this blog have noticed. I miss life before autism. I miss being able to go out as a family and enjoy the whole day. I miss going for car rides without disaster. I miss being able to make one meal with no gluten free options. I miss being able to make and eat whatever the hell I want without worrying if Sammy is going to steal it and eat it. I miss being me, feeling good about myself and having "good mom" moments. I don't feel like a good mom. I feel like I failed. I am having a pity party and I apologize. I just miss the parent I was before it revolved around autism. I miss being carefree, because here, in this house, carefree can never happen again.
Tomorrow, I will wake up. I will smile, put my feet on the floor and do it all over again. Because I love him. Because he deserves it, and because I know if I don't no one else will. He didn't ask for this any more than I did. Nothing changes how much I love him, I just wish I could figure out how to HELP him.
Friday, October 7, 2011
Dogs for autistic kids
My mom is going to school now. It seems if you are over 60 you can go to school for free here. How exciting for her. Shes taking English and PortugueseII and another class. I forget which one really but there is a third. She also works at sears and is a LMT. pretty cool to have a mom that can come and give you a massage when you need it , don't you think? Anyway ,I digress. She wrote a paper on dogs and autistic kids. It got me thinking.
It seems for some autistic kids there is a huge imbalance in cortisol (stress hormone) and circadian rhythms (sleep/wake cycles). Sammy seems to be one of those kids. He has a hard time both sleeping and waking , resting and regulating. He becomes anxious easily and stresses over things beyond my comprehension. Kids like Sammy struggle with a higher level of cortisol and have difficult with day to day regulation.
"Cortisol rhythm is extremely out of sync in children with ASD, due to imbalanced melatonin and ACTH production. The more severe the autism, the more abnormal the diurnal rhythms.9 The need for cortisol is so great however, that cortisol suppression is resistant to dexamethasone-suppression testing.10 While there is a huge cortisol dysregulation, DHEA-S and testosterone seem to be similar in children with autism and those without.11" read the full article here
There is evidence suggesting that animals, like dogs, lower cortisol in children like Sammy. It can help them adjust to new environments and new people. The mornings are the hardest part of our day and it seems some ASD kids have a spike in cortisol about 30 minutes after waking in the morning.
In the two weeks before the dogs were brought in, the children's cortisol levels rose 58 percent during the first 30 minutes they were awake in the morning. But when the dogs were present, this awakening response was reduced to just a 10 percent rise. And when the dogs were taken away after four weeks, the cortisol awakening response jumped back up to a 48 percent increase. read the full article here
So maybe a dog would help him. I don't know that I interested in an actual service dog but maybe more a companion dog. There are tons of articles supporting companion dogs for kids like Sammy. He melts around dogs and babies. The barking doesn't seem to bother him and maybe I could teach the dog to wake him in the morning rather than me. I don't know whats best for Sammy yet. I know an older dog would be best for us and it has to be a bigger breed dog to not get lost in the shuffle. Of course there is cost, vet bills,upkeep and grooming. Does the cost negate the benefit? How do I make this decision
I just want to make things easier for him. I hate seeing him struggle in the mornings and cry about everything. Maybe if his stress levels were lower he would be able to get dressed and enjoy time in the morning without all the tears. Like everything else it is simply about making t better for Sammy and the rest of us. His autism affects all of us in this house.
What do you think , would you consider a dog to help your child? whats the down side? Is there anything I am forgetting?
| my mom and Sammy |
It seems for some autistic kids there is a huge imbalance in cortisol (stress hormone) and circadian rhythms (sleep/wake cycles). Sammy seems to be one of those kids. He has a hard time both sleeping and waking , resting and regulating. He becomes anxious easily and stresses over things beyond my comprehension. Kids like Sammy struggle with a higher level of cortisol and have difficult with day to day regulation.
"Cortisol rhythm is extremely out of sync in children with ASD, due to imbalanced melatonin and ACTH production. The more severe the autism, the more abnormal the diurnal rhythms.9 The need for cortisol is so great however, that cortisol suppression is resistant to dexamethasone-suppression testing.10 While there is a huge cortisol dysregulation, DHEA-S and testosterone seem to be similar in children with autism and those without.11" read the full article here
There is evidence suggesting that animals, like dogs, lower cortisol in children like Sammy. It can help them adjust to new environments and new people. The mornings are the hardest part of our day and it seems some ASD kids have a spike in cortisol about 30 minutes after waking in the morning.
In the two weeks before the dogs were brought in, the children's cortisol levels rose 58 percent during the first 30 minutes they were awake in the morning. But when the dogs were present, this awakening response was reduced to just a 10 percent rise. And when the dogs were taken away after four weeks, the cortisol awakening response jumped back up to a 48 percent increase. read the full article here
So maybe a dog would help him. I don't know that I interested in an actual service dog but maybe more a companion dog. There are tons of articles supporting companion dogs for kids like Sammy. He melts around dogs and babies. The barking doesn't seem to bother him and maybe I could teach the dog to wake him in the morning rather than me. I don't know whats best for Sammy yet. I know an older dog would be best for us and it has to be a bigger breed dog to not get lost in the shuffle. Of course there is cost, vet bills,upkeep and grooming. Does the cost negate the benefit? How do I make this decision
I just want to make things easier for him. I hate seeing him struggle in the mornings and cry about everything. Maybe if his stress levels were lower he would be able to get dressed and enjoy time in the morning without all the tears. Like everything else it is simply about making t better for Sammy and the rest of us. His autism affects all of us in this house.
What do you think , would you consider a dog to help your child? whats the down side? Is there anything I am forgetting?
Thursday, October 6, 2011
Signs everywhere
There are signs for things everywhere. No parking, No soliciting, No smoking. They encourage or prevent and create all sorts of situations.Some are Funny some are very important and some are just plain Stupid.
Today while driving home I saw THIS in Rhode Island. I live directly behind a school.It's a high school and a really slow street. we only have maybe 8 houses on our street.However lots of teens drive to school now.they whip around before and after hours. On many occasions our neighbors have alerted us that Sam has run into the street. We watch him. Our yard is fenced. 95% of the time he wont leave the yard and he is never alone outside. However, Sammy is fast! really fast. He can and often does get out. A sign alerting these teens to him might help them slow down. Maybe we can educate at least one of them? It's no different from a Deaf Child sign or Children at Play sign...right?
What do you think. Would you put a sign in front of your house for your child?
Wednesday, October 5, 2011
Wordless Wednesday
Tuesday, October 4, 2011
sibling sacrafice
This post here ~~> What Autism Means to Me: Natalie Davis « Autism Speaks Official Blog:
'via Blog this'
'via Blog this'
How amazing it is to hear about this side of the story. I often worry about how the other children perceive Sammy and Tyler.
Tyler is best buddies with Sam. They have a deep link that I can't even begin to comprehend. I often find them engrossed in the same stim or Tyler leading Sammy into a calmer place before he melts down.The both of them enthralled with our stim pot and their reflection.
Nate started as the baby brother and is now almost of level ground with Sammy. As Nate changes every day and matures and figures things out Sammy often get's left behind. Sam will often bully Nathaniel , but lately Nate strikes back and reprimands Sammy. It's hard to watch the younger children passing him.

AJ and Sammy fight constantly. In fact even if AJ has nothing to do with whatever it is, Sammy finds him and takes it out on him. I have no idea what that is about. My best guess being that he feels really safe with AJ. AJ is the softest squishiest most lovable kid. AJ also has sensory processing issues and often kisses too hard, touches to fast and moves with some awkwardness. That translates into Sammy feeling as if he is under attack. Not a good way to feel and I am sure AJ often feels like he gets the raw end of the deal.

Grace and Sammy are a different story. Sammy is the baby whisperer and Grace adores him. She also adores Tyler. The three connect on awesome levels. I am not sure if it is just because she is a baby or if I will someday in the not too distant future be told Grace is also an ASD child.
Who knows what our house will be like in 5 years. I don't know how many kids we will have by then if even any more. However many we do have, Sammy's autism doesn't just change him it changes us all in ways I never would have imagined
Tyler is best buddies with Sam. They have a deep link that I can't even begin to comprehend. I often find them engrossed in the same stim or Tyler leading Sammy into a calmer place before he melts down.The both of them enthralled with our stim pot and their reflection.
Nate started as the baby brother and is now almost of level ground with Sammy. As Nate changes every day and matures and figures things out Sammy often get's left behind. Sam will often bully Nathaniel , but lately Nate strikes back and reprimands Sammy. It's hard to watch the younger children passing him.
AJ and Sammy fight constantly. In fact even if AJ has nothing to do with whatever it is, Sammy finds him and takes it out on him. I have no idea what that is about. My best guess being that he feels really safe with AJ. AJ is the softest squishiest most lovable kid. AJ also has sensory processing issues and often kisses too hard, touches to fast and moves with some awkwardness. That translates into Sammy feeling as if he is under attack. Not a good way to feel and I am sure AJ often feels like he gets the raw end of the deal.

Grace and Sammy are a different story. Sammy is the baby whisperer and Grace adores him. She also adores Tyler. The three connect on awesome levels. I am not sure if it is just because she is a baby or if I will someday in the not too distant future be told Grace is also an ASD child.
Who knows what our house will be like in 5 years. I don't know how many kids we will have by then if even any more. However many we do have, Sammy's autism doesn't just change him it changes us all in ways I never would have imagined
Monday, October 3, 2011
Smiling
Today after reading this this post here it's come to my attention I may be overlooking how blessed I am It's really easy when things get really hard to feel like you have it bad. I do try to remind myself that it could always be worse.
No one knows what tomorrow brings and people loose children all the time. So today I am making an effort to think of all the blessings Sammy brings to my life.
1. When he smiles he lights up the world.
2. He is amazing with his baby sister
3. He has an amazing soft heart and gentle spirit
4. He can be really silly
5. His laugh always makes me laugh
6. Sammy has taught me so much about the kind of parent I am
7. Sammy creates in me a urge to do better, be better
8. I will never take going on a family outing and having it go well for granted again
9. I will never take speech and stories from my children as an absolute.
10. I will always be grateful even if for only one moment each day from now on
those are just a few amazing Sammy things. What makes you feel grateful? What are you proud of? How far have you and your kids come?
No one knows what tomorrow brings and people loose children all the time. So today I am making an effort to think of all the blessings Sammy brings to my life.
1. When he smiles he lights up the world.
2. He is amazing with his baby sister
3. He has an amazing soft heart and gentle spirit
4. He can be really silly
5. His laugh always makes me laugh
6. Sammy has taught me so much about the kind of parent I am
7. Sammy creates in me a urge to do better, be better
8. I will never take going on a family outing and having it go well for granted again
9. I will never take speech and stories from my children as an absolute.
10. I will always be grateful even if for only one moment each day from now on
those are just a few amazing Sammy things. What makes you feel grateful? What are you proud of? How far have you and your kids come?
Friday, September 30, 2011
It's Only Fear
So I tried puzzling out what bothered me so much about the Parenthood episode. About 3 am I woke up with an AH-HA moment. It was the moment when Kristina had the ultrasound. When she agonized over knowing the sex of the baby simply because having another boy meant a higher chance of autism. BINGO
The baby.
I have 4 boys. One girl just ONE girl so far. I worry each time I have a child that I will have another child like Sammy. Having a child like Tyler doesn't frighten me, I can do that. Sammy makes me feel ill-equipped and crazy.. it makes me feel like I am in a free fall and there isn't a damn thing I can do to fix it. I hate fighting it every day. I fall into bed each night so tired I can't breath. I feel like I am never off duty, like I am never safe. Like a soldier going into battle day after day. I can't handle giving birth to another Sammy. Felling again like I was somehow at fault, somehow blamed. I cant go through that again. I can't beat myself up over another child being autistic. Those words "your son has autism" still echo all these years later. It makes me second guess what people think, what I think and what I do. I question it all , every day, every...single...second. Different studies with different faults. I know he changed after getting a HiB shot. I have re read it in his baby book over an over, but he was born "different" so what caused that?
More so on days like this when it's been a horrific week. It's been so bad here some days that the fear I have for my son gets so heavy I cannot breath. I cannot think. I feel like I am drowning in it. As though my lungs cannot move , paralyzed by fear and focus. It's been that kind of week.
On top of it I worked this week and I was tired when I watched Parenthood.
My daughter is my fear. Like I could somehow handle it better if Nathaniel was diagnosed tomorrow? There was a fleeting moment when Grace was born, when I looked and saw it was a girl. A quick,fraction of a second that barely existed where that thought crossed my mind. It was almost an unconscious thought barely on the surface.That thought... She's Safe.
I agonize over everything with Grace as well as with Nathaniel. I am terrified she too will be autistic. Some things already don't seem right. Am I just over analyzing it? I will love her no matter what. The same way I love Sammy fiercely, without reservation. But Lord please not my daughter. I know that sounds horrible to say. Typing is actually placing me on the verge of tears. I want to cry. It isn't that somehow my daughter is better or worth more to me than my sons. It's simply that she should be safe. I know too many moms and dads of autistic girls now to believe that. It may be less prevalent but it isn't any less real. She isn't immune to it. Apparently , neither am I.
The baby.
I have 4 boys. One girl just ONE girl so far. I worry each time I have a child that I will have another child like Sammy. Having a child like Tyler doesn't frighten me, I can do that. Sammy makes me feel ill-equipped and crazy.. it makes me feel like I am in a free fall and there isn't a damn thing I can do to fix it. I hate fighting it every day. I fall into bed each night so tired I can't breath. I feel like I am never off duty, like I am never safe. Like a soldier going into battle day after day. I can't handle giving birth to another Sammy. Felling again like I was somehow at fault, somehow blamed. I cant go through that again. I can't beat myself up over another child being autistic. Those words "your son has autism" still echo all these years later. It makes me second guess what people think, what I think and what I do. I question it all , every day, every...single...second. Different studies with different faults. I know he changed after getting a HiB shot. I have re read it in his baby book over an over, but he was born "different" so what caused that?
More so on days like this when it's been a horrific week. It's been so bad here some days that the fear I have for my son gets so heavy I cannot breath. I cannot think. I feel like I am drowning in it. As though my lungs cannot move , paralyzed by fear and focus. It's been that kind of week.
On top of it I worked this week and I was tired when I watched Parenthood.
My daughter is my fear. Like I could somehow handle it better if Nathaniel was diagnosed tomorrow? There was a fleeting moment when Grace was born, when I looked and saw it was a girl. A quick,fraction of a second that barely existed where that thought crossed my mind. It was almost an unconscious thought barely on the surface.That thought... She's Safe.
I agonize over everything with Grace as well as with Nathaniel. I am terrified she too will be autistic. Some things already don't seem right. Am I just over analyzing it? I will love her no matter what. The same way I love Sammy fiercely, without reservation. But Lord please not my daughter. I know that sounds horrible to say. Typing is actually placing me on the verge of tears. I want to cry. It isn't that somehow my daughter is better or worth more to me than my sons. It's simply that she should be safe. I know too many moms and dads of autistic girls now to believe that. It may be less prevalent but it isn't any less real. She isn't immune to it. Apparently , neither am I.
Thursday, September 29, 2011
Raw emotions
I am not knows for being warm and cuddly or soft. In fact my husband often refers to me as having "sharp edges" At some point I replaced the "melodramatic" child I was with this crusty sharp edged no teary person. I don't like that about me. I am emotional and intense. I get angry, I get cranky, I can even sometimes get down right mean. I do my best to avoid the last one as best I can.It doesn't happen often. Depending on who you ask, they may tell you varying degrees of that. I just don't do soft and squishy. I am loving and gentle with my children but I don't do empathy or sympathy well. I have gotten better and actually go through a checklist in my head now when someone says something sad to me or tells me something emotional, even when someone dies I often don't cry about it in front of anyone but will sometimes cry alone.Things often come out of my mouth sans filter. I have asked people if they had a stroke and other embarrassing things. So i now stop before I react and I have trained myself to not react emotionally to things on the outside. Unless, I am tired
Like today. I worked last night and the babies didn't sleep much then this morning Sammy had yet another behavior and I had to forcibly dress him. Grace was cranky and got overtired before it was time for her to nap. That resulted in screaming and crying. Nate bonked me in the face which is still sore from surgery. I am down on myself about a ton of stuff and being tired just makes me feel even more vulnerable. So why on Earth I decided it was a good day to watch Parenthood I don't know. I don't understand what I was thinking.
Now, my belly is in knots and my head is spinning trying to place where my thoughts are. I can't seem to flesh it out... I promise when I do I will come here first.
Like today. I worked last night and the babies didn't sleep much then this morning Sammy had yet another behavior and I had to forcibly dress him. Grace was cranky and got overtired before it was time for her to nap. That resulted in screaming and crying. Nate bonked me in the face which is still sore from surgery. I am down on myself about a ton of stuff and being tired just makes me feel even more vulnerable. So why on Earth I decided it was a good day to watch Parenthood I don't know. I don't understand what I was thinking.
Wednesday, September 28, 2011
11 months ago
this was Sammy 11 months ago.The night before Halloween. It amazes me how far he has come in less than a year. I keep looking back and wondering how I didn't realize we were running full steam forward. He has changed so much in just a short 11 months. I wonder what the next year will bring.How will he change? Will he change?
The subtle differences that turned into GIANT leaps the amazing things he can do now. He still can't read. Pushing him results in huge fits and tears. He still can't get dressed by himself. He still cant wipe himself. So many things he CAN'T do
But...
SO many things he CAN
He CAN ride a bike
He CAN climb a tree
He CAN put on his own socks and shoes most days
He CAN tell me he loves me
He CAN improve
HE CAN LEARN
after all he Sam the cookie man and he is amazing
show me the funny and amazing things your kids do and join the link up right here
Tuesday, September 27, 2011
planning for the future
These are my children. This is my heart and my entire life. Every one of them just as important. This photo shows so much personality. Nate, the clown in the front. The protective big brother Tyler with Sammy being a goofball. AJ ready to take on the world and Grace happy to just be with momma. I am the all time protector. I watch over each of them constantly. It's my job,It's my privilege and I wouldn't trade it for the world.
However, someday I will be gone. I pray not for a very very long time. Who is going to take care of them then? How will they survive? Bad things happen all the time. What do we do then? I have no doubt in my mind that my boys and Grace will be ok in the long run on their own but someone will have to care for Sammy, no matter when we die. Now or 20 years from now.
We have begun planning and we are buying life insurance. Each child will also be insured as a way to grow money for their college funds and for Sammy therapy and other things he may need along the way. It's hard to think of the future where I wont be there to take care of him. If you all don't already have life insurance you might want to look into it. The next thing to take care of is a Last Will and Testament. I am not really ready to cross that bridge yet.
How do you decide who will take care of your special needs child? I wonder how other parents make that decision.
However, someday I will be gone. I pray not for a very very long time. Who is going to take care of them then? How will they survive? Bad things happen all the time. What do we do then? I have no doubt in my mind that my boys and Grace will be ok in the long run on their own but someone will have to care for Sammy, no matter when we die. Now or 20 years from now.
We have begun planning and we are buying life insurance. Each child will also be insured as a way to grow money for their college funds and for Sammy therapy and other things he may need along the way. It's hard to think of the future where I wont be there to take care of him. If you all don't already have life insurance you might want to look into it. The next thing to take care of is a Last Will and Testament. I am not really ready to cross that bridge yet.
How do you decide who will take care of your special needs child? I wonder how other parents make that decision.
Monday, September 26, 2011
hands free homework
The little neighbor girl lives with her Nana. He mom moved out a while ago. She spends a lot of time here and we love on her. Today her Nana sent her over because she couldn't understand the homework the kids had. She is in second grade with Sammy but in different classes. Same homework.
They sat together and Little Miss caught on fast after we went over it. Sammy was obsessing over snack and chewing his pencil. Once snack came out he got work done. he ate and worked diligently but only on that one paper. I let him save the second one for after dinner.
I reminded him later in the evening about the paper. No argument,no fight nothing just "ok mom" before the paper was even in front of him however he was asking for help. Then something amazing happened
he stopped.Looked at it and said "nope,never mind I got this" and proceeded to do about 3/4 of his math paper alone. WOW. what an awesome night.
it's those little things. the tiny steps that mean so much to parents of special kids. the things most parents take for granted, or loose the wonder of. I know I did before Sammy.
They sat together and Little Miss caught on fast after we went over it. Sammy was obsessing over snack and chewing his pencil. Once snack came out he got work done. he ate and worked diligently but only on that one paper. I let him save the second one for after dinner.
I reminded him later in the evening about the paper. No argument,no fight nothing just "ok mom" before the paper was even in front of him however he was asking for help. Then something amazing happened
he stopped.Looked at it and said "nope,never mind I got this" and proceeded to do about 3/4 of his math paper alone. WOW. what an awesome night.
Sunday, September 25, 2011
Don't ask me how I do it
Don't ask me how I do it. how I keep things together or how I manage every day. Don't ask me how I manage to get things done, or go fun places. Don't ask me how I manage to cook or clean the house. Don't ask me.please it makes me nuts when people say that. I manage the same way everyone else does. one moment at a time, one breath, one step and I still screw up
Today we had a bad day.First I couldn't sleep last night.Then my computer ate all of the photos from Sammy's birthday party. Sammy was wild last night and it seems to have carried over to today. We were restraining him by 11am just so he wouldn't hurt himself or anyone else. He attacked his little brother over a program they were watching on Netflix. I handled some of the outbursts very well and was proud of myself. I had to walk away after a few hours though. He has a weird rash and it's setting his sensory system out of whack. He's angry and mean sometimes and this was one of those times. An Epsom salts bath and some warm milk with honey seemed to mellow the child out.
He was so wild yesterday I never got around to posting what I wanted to and the playroom still looks like a bomb went off. I think my neighbors may be thinking that white trash moved into the neighborhood because there are toys and pieces of things littering my driveway all the time. We did however have an awesome dinner with a great friend and I did get a little knitting done.Nate and I got to cuddle and I got a couple of great hugs from Sammy
I am not Martha Stewart,or Betty Crocker or Donna Reed. I am just me. I am raising 5 kids and quite often those five kids are far more important that the dishes or laundry. I would rather finger paint and bake than vacuum and dust.It drives my OCD crazy to see everything in the toy room out at once,but there will come a time when it will all be clean and organised. By then all my babies will be grown and i will miss these moments.
So please don't ask me how I do it because the honest answer is ...I don't
Today we had a bad day.First I couldn't sleep last night.Then my computer ate all of the photos from Sammy's birthday party. Sammy was wild last night and it seems to have carried over to today. We were restraining him by 11am just so he wouldn't hurt himself or anyone else. He attacked his little brother over a program they were watching on Netflix. I handled some of the outbursts very well and was proud of myself. I had to walk away after a few hours though. He has a weird rash and it's setting his sensory system out of whack. He's angry and mean sometimes and this was one of those times. An Epsom salts bath and some warm milk with honey seemed to mellow the child out.
He was so wild yesterday I never got around to posting what I wanted to and the playroom still looks like a bomb went off. I think my neighbors may be thinking that white trash moved into the neighborhood because there are toys and pieces of things littering my driveway all the time. We did however have an awesome dinner with a great friend and I did get a little knitting done.Nate and I got to cuddle and I got a couple of great hugs from Sammy
I am not Martha Stewart,or Betty Crocker or Donna Reed. I am just me. I am raising 5 kids and quite often those five kids are far more important that the dishes or laundry. I would rather finger paint and bake than vacuum and dust.It drives my OCD crazy to see everything in the toy room out at once,but there will come a time when it will all be clean and organised. By then all my babies will be grown and i will miss these moments.
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| Sammy at 2.5 |
Friday, September 23, 2011
Storming the castle
Like I said last night was open house. Do you think she could have mentioned his behavior is taking a downward spiral? Maybe just a heads up? Anything?
Nope.
So his behavior card comes in today and he received 2 warnings Wednesday and today. In fact today he HURT someone. He jumped on a child. The child went to the nurse and an accident report was filed. Why didn’t anyone call me about this? No warning, just a note and his behavior slip. The note actually made me chuckle and then I got mad. Maybe I am just over sensitive and maybe it’s just my baggage. The note reads
Mr + Mrs Chagnon,
Today at music Sam “jumped” and hit another student in the arm pretty hard. The student had to go to the nurse and an accident report was written up. please speak with Sam about trying to think before he acts He did say he was sorry
Now to be fair this is only the third or fourth week of school so some adjustment is to be expected. And to be fair, we were spoiled last year with one of “those” teachers. You know the ones that make you feel really great about he school your child is in. So his teacher this year has a long way to go in our eyes to “measure up” She seems great, intelligent and reasonably understanding but she is missing that special something the other teacher had. I don’t feel certain with his placement this year but I am also rather protective of Sammy. So we wait.
What angers me is the “please speak with Sam about trying to think before he acts” WOW a few weeks in and she has it all figured out . How did we miss this so long? We just have to speak with him about not being impulsive. DUDE why didn’t I think of that? Seriously could have saved myself a ton of extra crap. I want to write back
Dear Teacher,
Sammy has autism and ADHD there for he is extremely impulsive. That is why we outline restrictive safety measures for Sammy when out in the community. He has very few safety skills and even less empathy. He can be a danger to other students as well as himself. How did my child get high enough on something to jump on another child and hurt him this way? Please review his IEP ASAP.
I want to send that note in, but I wont. I will write something along those lines but far nicer. I will send her in lot’s of reading material about impulsivity and ASD kids. I will remind her that a few years ago he got away from a teacher and ran into the street. I will reiterate my concern for his safety. But not one bit of it will be snarky or angry. Sarcasm helps no one right?
That’s what this blog is for…
Thursday, September 22, 2011
Hi, I want to introduce you to my mom
Today was Sammy's open house and normally I hate them. Seriously It makes me feel like a caged animal. I always wonder if the teachers are all watching me thinking "ahhh that's why he is the way he is" totally my baggage I get it. still. I hate it. The minute I walk in I can almost hear the circus music playing in the back ground. I look around hoping no one is tossing a beach ball at me expecting me to balance it on my nose or something crazy. It's always the same stuff, see the place Sammy sits (near the teacher) see all the work he does (with help) and meet the teacher. She seems pretty nice.but she isn't Mrs. Tynan!(last year's teacher who had that special something that made her super amazing) I warned her about Sammy's best friend make believe Max and it turns out she has already been warned. (yay for this school district so far) All in all he seems to be doing far better this year than last which to me is a surprise. I spoke with Mrs. Gent (the special ed liaison) and got some great info on what he is doing, signed him up for a program at recess for social skills and spoke to the gym and music teacher about how Sam seems to be doing socially in those classes(since it is far less structured)
There was one huge highlight of the night. each person he brought me to he smiled and said "i want to introduce you to my mom" and then looked back at me smiled and said "mom this is _______ my teacher" it was amazing.INCREDIBLE. I have never seen him do anything like this before in his life! He has a "best friend" as well now and when they saw each other the conversation was fluid.He even said "hey great to see you,I want you to meet my mom"
That may not seem like much for some. The parents of NT kids reading this may not understand the huge accomplishment this is. It's the equivalent of Sammy building a space ship and flying to the moon. I can only imagine he learned this at Social Skills group, but not only did he LEARN it he USED it! I am one very proud momma today.It almost made it worth it when he had a behavior before bed.
linking this for today!
I decided this week to jump along with Toddle Along Tuesday with Mama G at Growing up Geeky. The topic this week is “Something you love about your kid(s).”
There was one huge highlight of the night. each person he brought me to he smiled and said "i want to introduce you to my mom" and then looked back at me smiled and said "mom this is _______ my teacher" it was amazing.INCREDIBLE. I have never seen him do anything like this before in his life! He has a "best friend" as well now and when they saw each other the conversation was fluid.He even said "hey great to see you,I want you to meet my mom"
That may not seem like much for some. The parents of NT kids reading this may not understand the huge accomplishment this is. It's the equivalent of Sammy building a space ship and flying to the moon. I can only imagine he learned this at Social Skills group, but not only did he LEARN it he USED it! I am one very proud momma today.It almost made it worth it when he had a behavior before bed.
linking this for today!
I decided this week to jump along with Toddle Along Tuesday with Mama G at Growing up Geeky. The topic this week is “Something you love about your kid(s).”
Wednesday, September 21, 2011
do I have to?
I hated homework as a kid.seriously it was like filing my own teeth with an emery board. I hated it so much. I decided I liked it by college but only because by then the OCD had tipped the scale in favor of neat written papers and straight lines.
My oldest son Tyler has Aspergers and at 16 is delayed only in the executive functioning skills (planning,organizing and follow through) and he does have a written language disability called Dysgraphia. For those of you that don't know what that is, it means his writing sucks. it's really bad. To this day at 16 he still spells red- R-A-D on paper. He knows it's red, he can do it verbally and he is not lacking by any means for intelligence. The signal gets jammed from his head to his hands. We tried an assisted technology eval a few years ago and found something called http://www.gingersoftware.com/ A minor miracle for our household and the writing of papers and book reports. Tyler hates homework as well . It is hard and complicated and he struggles with it. In 7th grade he almost failed because of homework. A's and high B's on tests,classwork and all projects without writing and they still wanted to fail him for homework. It did not happen, and while I understand the importance of following directions and doing the required work, I don't think any kid should fail based on homework. If it can help their grade, awesome!
So here we are with Sammy.2 pages of homework every night. One math,One spelling. Sammy.Hates. Homework! Every night it's the same battle,the same argument the same tears and gnashing of teeth. Would it be terrible of me to not have him do it? To have him try and encourage him to try but if he just can't get himself together to let him skip it? Does it make me a horrible mom? Snacks during the work help him since that child will eat until he pops if we let him. So how hard do I push.
My oldest son Tyler has Aspergers and at 16 is delayed only in the executive functioning skills (planning,organizing and follow through) and he does have a written language disability called Dysgraphia. For those of you that don't know what that is, it means his writing sucks. it's really bad. To this day at 16 he still spells red- R-A-D on paper. He knows it's red, he can do it verbally and he is not lacking by any means for intelligence. The signal gets jammed from his head to his hands. We tried an assisted technology eval a few years ago and found something called http://www.gingersoftware.com/ A minor miracle for our household and the writing of papers and book reports. Tyler hates homework as well . It is hard and complicated and he struggles with it. In 7th grade he almost failed because of homework. A's and high B's on tests,classwork and all projects without writing and they still wanted to fail him for homework. It did not happen, and while I understand the importance of following directions and doing the required work, I don't think any kid should fail based on homework. If it can help their grade, awesome!
So here we are with Sammy.2 pages of homework every night. One math,One spelling. Sammy.Hates. Homework! Every night it's the same battle,the same argument the same tears and gnashing of teeth. Would it be terrible of me to not have him do it? To have him try and encourage him to try but if he just can't get himself together to let him skip it? Does it make me a horrible mom? Snacks during the work help him since that child will eat until he pops if we let him. So how hard do I push.
son Rise program
This is the first I have heard of this program. Tell me what do you think?
http://www.autismtreatmentcenter.org/contents/about_son-rise/what_is_the_son-rise_program.php
http://www.autismtreatmentcenter.org/contents/about_son-rise/what_is_the_son-rise_program.php
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