Funny how I only seem to want to post when I am in a bad mood. I am feeling better today so I am going to try to post somethign more positive. Sam's poop issues are still driving me bananas. I don't know what is going on. I think it may be something Freud could comment on since I think there is some control/sensation issue involved. I am also looking at his diet. He has been eating more fruit and I wonder if things are moving more quickly than he is used to? I had to throw away the little trampoline we had in the family room last night. I want paint too detailed a picture for you but imaging play doh going through the spaghetti maker? Yeah. gross.
I finished grading a huge number of research papers so that weight is off my shoulders.
I am gearing up for Sam's IEP meeting. I just got his re-eval reports and basically he is functioning in the <1 percentile. That is pretty much as low as you can score. His scores have not increased in two years of this school program (although he has made some gains, they are not measurable). I am going to write a detailed letter tonight saying that I expect them to increase his services since clearly the program with which he has been provided is not the most "appropriate" for his level of functioning.
Maya is talking up a storm and adding new words every day. It is very cute to hear her in her crib yell out "Hear I come!".
Both kids are enjoying the nice weather. We have worked hard to set up the backyard like a playgrounf. Today will be fun for them.
Sunday, May 30, 2010
Saturday, May 29, 2010
People want to hear (yes, another pity party)
People want to hear:
that you are making the best of it
that you have faith
that you'll never give up
that Autism is a gift
that you wouldn't change your child for anything
that this experience is making you stronger
They don't seem to want to hear:
that your barely verbal five year old who seemd to be potty trained has started to regress. That he pooped in his underwear while stimming on the deck yesterday then took off his pants and ran through it a few times before I could stop him.
that later that same night he had more poop to make on the toilet (after starting in his night time pull-up)but the second I looked away he reached down to feel it and then wiped his dirty hands all over his clean pjs, his arms and his face
that last summer I worked my ass off getting him to string 3-4 very apraxic words together "I want ___________" and now the ability has completely disappeared.
that I literally want to poke my eardrums out sometimes because his vocal stims are so loud, so constant and so annoying.
These types of things either end conversations or result in an attempt at understanding (like: my two year old got his hands in his diaper once). I really don't know what kind of response I want. Maybe there is nothing anyone can say and maybe I shouldn't bother mentioning these things.
Here is the truth:
I am sometimes unable to make the best of it because sometimes even "the best of it" sucks
Faith? still thinking about that one
no, I will never give up but I have to balance that with accepting reality
Autism is not a gift. My son is a gift but it is delusional to say that something that takes away his ability to function, care for himself and communicate is a gift. Have I learned a lot? Sure. but I would trade it all for one conversation with my son.
If there was a magic pill that would take away Sam's Autism I would get it.
While this experience may have made me "stronger" in some ways, it has made me weaker, sadder, more lonely, and more terrified in others. I am not sure the trade off is worth it.
It has been a crappy week in more ways than one.
that you are making the best of it
that you have faith
that you'll never give up
that Autism is a gift
that you wouldn't change your child for anything
that this experience is making you stronger
They don't seem to want to hear:
that your barely verbal five year old who seemd to be potty trained has started to regress. That he pooped in his underwear while stimming on the deck yesterday then took off his pants and ran through it a few times before I could stop him.
that later that same night he had more poop to make on the toilet (after starting in his night time pull-up)but the second I looked away he reached down to feel it and then wiped his dirty hands all over his clean pjs, his arms and his face
that last summer I worked my ass off getting him to string 3-4 very apraxic words together "I want ___________" and now the ability has completely disappeared.
that I literally want to poke my eardrums out sometimes because his vocal stims are so loud, so constant and so annoying.
These types of things either end conversations or result in an attempt at understanding (like: my two year old got his hands in his diaper once). I really don't know what kind of response I want. Maybe there is nothing anyone can say and maybe I shouldn't bother mentioning these things.
Here is the truth:
I am sometimes unable to make the best of it because sometimes even "the best of it" sucks
Faith? still thinking about that one
no, I will never give up but I have to balance that with accepting reality
Autism is not a gift. My son is a gift but it is delusional to say that something that takes away his ability to function, care for himself and communicate is a gift. Have I learned a lot? Sure. but I would trade it all for one conversation with my son.
If there was a magic pill that would take away Sam's Autism I would get it.
While this experience may have made me "stronger" in some ways, it has made me weaker, sadder, more lonely, and more terrified in others. I am not sure the trade off is worth it.
It has been a crappy week in more ways than one.
Sunday, May 16, 2010
Yard Sales
I love yard sales. I am slowly becoming one those crazy ladies who makes a quick zip around a corner if I see a sign on a telephone pole. I get even more excited if I can park right next to the sale so that I don't have to bring both kids out of the car. I take a quick look around to see if the sellers have toddler clothes or toys and then I make selections or leave. I have found some incredible deals. Take last weekend - Mark was home on a Saturday (very rare) so I went to the post offic ewith just Maya in tow. We drove by one yard sale on the way home which was a no go. THe second stop was a hit. The family had about ten big plastic bins outside in the driveway. They were closed because it was raining off and on. I stepped out of the car and asked if they had children's clothes. They said yes. I asked if they had stuff for a toddler girl and they said "That's all we have here!" Their price? 2 for $1. A steal right?Especiallly considering most of the stuff was from The Children's Place. As I began to gather an armful of stuff, they offered me a clear garbage bag and said fill it and pay $5 bag. I filled two. I got two bags full of 2T and 3T clothes for Maya for $9 (I was short a dollar bill and as I counted change to reach the 10 they said 9 was fine). I think I may have actually done a little jig as I carried the bags to the car. I counted the items up when I got home - 55 items for $9. Why such a deal? I think they were worried that with the rain they might not have many people show up. Also, the wife works with autistic children and as we talked while I looked, out mutual interest came up.
Now just to let you know how obsessed I can get, I went back a little later to see what was left. I got another 22 item for $11. Maya has all the 2T jeans, shirts, skirts, sweatshirts etc she could
possibly want.
Some of my favorites:
Today I got a Parent's Magazine brand wooden trike and a toy vacuum cleaner for $12.
Now just to let you know how obsessed I can get, I went back a little later to see what was left. I got another 22 item for $11. Maya has all the 2T jeans, shirts, skirts, sweatshirts etc she could
possibly want.
Some of my favorites:
Today I got a Parent's Magazine brand wooden trike and a toy vacuum cleaner for $12.
Tuesday, May 11, 2010
Sam's frustration
Sam has developed a new frustration. He loves to play with plastic drinking straws. They keep him busy and out of trouble so I buy them in bulk! He has a box with slits in the tops into which he can drop the straws and then retrieve them. He does the same thing outside on the deck - he drops the straws through the spaces between the boards of the deck and then goes under to get them (there is room for him to go under relatively comfortably). Lately, when he drop them through the boards of the deck he starts whining and crying when they fall. He cries the whole time he walks to go get them. Due to the way he chews them, some of the straws don't fall but many of them do. I try to explain that if he drop them they are likely to fall. Of course he doesn't know what I am saying but I try. He does it again and again and again and again. . . Part of me wonders if perhaps part of his brain is tired of this stim/perseveration but another part won't let him stop.
On the adoption front, everything is on hold. After getting the letter about training, rushing around trying to arrange a babysitter and finding one, I got a call saying they have too many families interested in that particular program right now so we have to wait. If we do everything now it will might expire before we get a referral/placement. We have to talk again and decide if this is still the way we want to go. We know we want a third child but which route?
On the adoption front, everything is on hold. After getting the letter about training, rushing around trying to arrange a babysitter and finding one, I got a call saying they have too many families interested in that particular program right now so we have to wait. If we do everything now it will might expire before we get a referral/placement. We have to talk again and decide if this is still the way we want to go. We know we want a third child but which route?
Sunday, May 2, 2010
5
Sam is 5. Actually he has been 5 since April 26th but I haven't had time to write about it. I sent cupcakes to school and picked up an ice cream cake on my way home from work. I hoped that all the sugar might signal something in his brain and make him realize that it was a special day. He allowed me to put the paper crown his school sent home on his head for a photo at the dinner table. Then he willingly let his sister steal it because he hates hats. He seemed happy.
Medication update - we continue on this path for now. No miracles yet but we have noticed a slightly increase in his abilty to understand and follow directions. What I had really hoped for - a decrease in the CONSTANT stimming- has not happened. I am eagerly avaiting the results of Ohio State Medical's study on mecamylamine. I don't know why I have a gut feeling about that one; I am far from qualified.
Other stuff - we are considering adoption (from foster care). Family members: I know we haven't discussed this with you so please don't be upset with us if this is the first you hear of it. We just don't want to have to justify our decision right now. We are aware we have a lot on our plate and we are aware that this is not an easy road to travel. We have been speaking with families who have been through it and we are hearing about the good and the bad. We know we want a third child, we know we have always been interested in adoption, and we know a lot about getting services for special needs. We know that is we do this we will need help )like a sitter once a week so I can run errands) We feel we have a particular set of skills now that would make us good at parenting a child who is at high risk for various forms of special needs. We are in the exploration phase. I attended an initial orientation with another family I know. We registered our interest with Children's Aid and we are having an initial safety inspection this week when we will get more information about the state's requirements. We may learn that we cannot meet their reqirements. Or they may say we need really expensive work on our home that we can't do right now. We will see. Since , at the moment, we are only open to infant or toddler adoption, they may say that my needing to work full time as a teacher disqualifies us. We also may not be able to complete the required 27 hours of training this May (anyone want to watch my kids monday and wednesday nights????). SO there are many unknowns but we would like to figure out if this is a possibility for us.
If you would like to speak to me about this please do but leave out phrases like "taking on another problem" "asking for trouble". I will completely tune you out once I hear those things. As the parent of a special needs child and as a high school teacher, I can tell you that I have see just as many "problems" in families with biological children as with adopted.
Medication update - we continue on this path for now. No miracles yet but we have noticed a slightly increase in his abilty to understand and follow directions. What I had really hoped for - a decrease in the CONSTANT stimming- has not happened. I am eagerly avaiting the results of Ohio State Medical's study on mecamylamine. I don't know why I have a gut feeling about that one; I am far from qualified.
Other stuff - we are considering adoption (from foster care). Family members: I know we haven't discussed this with you so please don't be upset with us if this is the first you hear of it. We just don't want to have to justify our decision right now. We are aware we have a lot on our plate and we are aware that this is not an easy road to travel. We have been speaking with families who have been through it and we are hearing about the good and the bad. We know we want a third child, we know we have always been interested in adoption, and we know a lot about getting services for special needs. We know that is we do this we will need help )like a sitter once a week so I can run errands) We feel we have a particular set of skills now that would make us good at parenting a child who is at high risk for various forms of special needs. We are in the exploration phase. I attended an initial orientation with another family I know. We registered our interest with Children's Aid and we are having an initial safety inspection this week when we will get more information about the state's requirements. We may learn that we cannot meet their reqirements. Or they may say we need really expensive work on our home that we can't do right now. We will see. Since , at the moment, we are only open to infant or toddler adoption, they may say that my needing to work full time as a teacher disqualifies us. We also may not be able to complete the required 27 hours of training this May (anyone want to watch my kids monday and wednesday nights????). SO there are many unknowns but we would like to figure out if this is a possibility for us.
If you would like to speak to me about this please do but leave out phrases like "taking on another problem" "asking for trouble". I will completely tune you out once I hear those things. As the parent of a special needs child and as a high school teacher, I can tell you that I have see just as many "problems" in families with biological children as with adopted.
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