I was at the local school budget meeting last week in my hometown. Its a small town only about 15k people between 6 towns in a 40 mile area with about 10k in my town, the biggest. but even in a close knit small new England town there exist close mindedness on a scale unbelievable. Mom-nos who doesn't live near me even heard about it. She posts about it here, http://www.hopefulparents.org/blog/2011/3/11/when-the-political-is-personal.html .
she puts it more eloquently than I can. She also doesn't live here and so has not had to spend the last week trying to find her happy place so that the lesson she teaches her children is not how to fillet an asshole but instead how to proactively and civilly achieve political change.
Tuesday, March 15, 2011
Monday, March 7, 2011
Words of Wisdom from one on the spectrum
if you judge a fish by its ability to climb a tree,... it will live its whole life believing that it is stupid.
— Albert Einstein
— Albert Einstein
Tuesday, February 1, 2011
back to normal
Its been a while since my last post. Life at times seems to hit the fast forward button and before you know it months have passed. Life with kids is never boring and life with 2 on the spectrum is even less so. Between birthdays, doctor appointments, IEP meetings and just life in general I never seem to have a moment to sit down and write. I'm hoping this year will be different and I will be able to post far more often than I have in the past.
Since I last posted somethings have changed alot.
My Eldest FINALLY has an IEP. You wouldn't think with a note from his specialist that he has adhd and aspergers that it would take 4 years to get one but in his school district it does. The funny thing is he got it for his ADHD diagnosis not his Aspergers. And yet its his aspergers that causes the most problems at home, not his ADHD. It doesn't really matter to me what they put on the paper just as long as he gets the services he needs. So for the first time in a very very long time he actually has a b average in school. When I look at his report card I kinda start to see the light at the end of the tunnel that represents him living independently.
He also turned 16 this last year so I now look forward to teaching him to drive this summer. When you tend to get overloaded with external stimuli the thought of putting a 2 thousand pound death causing machine in your hands is a scary proposition. I think this is going to be a slow process and Mom will need regular self medication at Friendlies with forbidden chocolate ice cream. and wine at home after wards.....
My youngest is now in kindergarten. We lucked out, he is in the best kindergarten class we could hope for in our local area. A mixed inclusive class that this year has 5 students in it with a teacher with 2 in class aides. a 1:2 ratio is a wonderful thing. He is loving class and I say with some pride is the smartest kid in the class. He is reading at a 2nd grade level and doing math at a similar level. The teacher has commented that its really hard to call on him in class because he is so far ahead in those areas that he tends to make the other kids feel bad that they cant catch on so quick. She does a really good job of challenging him without rubbing his brains in their faces. So this year has been a time to really work on his other areas such as social skills and get lots of time working on his motor skills and such. Next year as he transitions back into a regular classroom will be a challenge. The school system tends to like the one size fits all approach to lesson planning and "teaching" him 1st grade math and reading when he is so much farther ahead of that will only lead to trouble. A bored kid is a kid causing trouble. a Genius level IQ bored kid is a super villain in the making.... Dr Doom must have been bored a lot in school as a kid.
He has a new obsession though. He loves the game of monopoly. He plays the board version (when we have the time), a version on his computer and another version on the old game cube we have. And when none of those 3 options are open he makes boards with his legos and plays that way with himself *g*. At least its a break from Thomas and friends all day.
So life is pretty much back to normal around here,what ever normal is...
Since I last posted somethings have changed alot.
My Eldest FINALLY has an IEP. You wouldn't think with a note from his specialist that he has adhd and aspergers that it would take 4 years to get one but in his school district it does. The funny thing is he got it for his ADHD diagnosis not his Aspergers. And yet its his aspergers that causes the most problems at home, not his ADHD. It doesn't really matter to me what they put on the paper just as long as he gets the services he needs. So for the first time in a very very long time he actually has a b average in school. When I look at his report card I kinda start to see the light at the end of the tunnel that represents him living independently.
He also turned 16 this last year so I now look forward to teaching him to drive this summer. When you tend to get overloaded with external stimuli the thought of putting a 2 thousand pound death causing machine in your hands is a scary proposition. I think this is going to be a slow process and Mom will need regular self medication at Friendlies with forbidden chocolate ice cream. and wine at home after wards.....
My youngest is now in kindergarten. We lucked out, he is in the best kindergarten class we could hope for in our local area. A mixed inclusive class that this year has 5 students in it with a teacher with 2 in class aides. a 1:2 ratio is a wonderful thing. He is loving class and I say with some pride is the smartest kid in the class. He is reading at a 2nd grade level and doing math at a similar level. The teacher has commented that its really hard to call on him in class because he is so far ahead in those areas that he tends to make the other kids feel bad that they cant catch on so quick. She does a really good job of challenging him without rubbing his brains in their faces. So this year has been a time to really work on his other areas such as social skills and get lots of time working on his motor skills and such. Next year as he transitions back into a regular classroom will be a challenge. The school system tends to like the one size fits all approach to lesson planning and "teaching" him 1st grade math and reading when he is so much farther ahead of that will only lead to trouble. A bored kid is a kid causing trouble. a Genius level IQ bored kid is a super villain in the making.... Dr Doom must have been bored a lot in school as a kid.
He has a new obsession though. He loves the game of monopoly. He plays the board version (when we have the time), a version on his computer and another version on the old game cube we have. And when none of those 3 options are open he makes boards with his legos and plays that way with himself *g*. At least its a break from Thomas and friends all day.
So life is pretty much back to normal around here,what ever normal is...
Tuesday, July 13, 2010
Just a thought for today -
Autism awareness starts by recognizing that you probably know or are related to someone with autism. Take a look around you. There is probably someone you know or many someones who are on the spectrum. What can you do to assist or accept them? If everyone gave just a little bit of time to a person on the spectrum to assist them or to help them be accepted for who they are life would be that much easier and happier for those on the spectrum and their loved ones.
We're not asking for everything on a silver platter, just a moment a day. Stop a person with ASD from being bullied, don't look at the parent of a child having a meltdown due to being over stimmed like a strange alien from another planet that needs to leave, acknowledge that those on the spectrum have a right to exist and can contribute to society. Volunteer, walk in a fund raiser, etc. Just a moment a day from everyone can make a lifetime of happiness for so many.
Autism awareness starts by recognizing that you probably know or are related to someone with autism. Take a look around you. There is probably someone you know or many someones who are on the spectrum. What can you do to assist or accept them? If everyone gave just a little bit of time to a person on the spectrum to assist them or to help them be accepted for who they are life would be that much easier and happier for those on the spectrum and their loved ones.
We're not asking for everything on a silver platter, just a moment a day. Stop a person with ASD from being bullied, don't look at the parent of a child having a meltdown due to being over stimmed like a strange alien from another planet that needs to leave, acknowledge that those on the spectrum have a right to exist and can contribute to society. Volunteer, walk in a fund raiser, etc. Just a moment a day from everyone can make a lifetime of happiness for so many.
Wednesday, July 7, 2010
puzzles sadness and disappointment
Well today came a day I was hoping wouldn't come. By enrolling my child in a day care that specializes in special needs children and stresses inclusion and intermixing of nt and non nt children (nt= neurotypical) I had hoped that my sons challenging behavior would be worked around instead of excluding him from things. I was wrong.
Today was the big weekly field trip. They were going to a local-ish train yard for a ride. A was very excited as trains are his thing. ANY train floats his boat. They arrived there too late to ride the train so they opted to go to another attraction local to the yard. While at the other place A had issues listening, staying with the adults (he is a bit of a bolter , but this is nothing new, they KNEW this, its in his IEP they helped draft) and while on the way back to the center he opened his door that had not had the child locks activated on it scaring the driver. A never rides in my car without the locks activated so he really isn't used to the latch actually opening his door. But because of all this A has been un invited to the swim trip tomorrow to a local lake. We're in the northeast so you can imagine how hot it is right now , upper 90s and the dew point in the 70s makes for VERY uncomfortable weather. Add to that my last post where I mentioned just how much A loved swimming last week and you can imagine how upset I am about this. I was ciounting on the trip to help keep A cool since the heat only makes things much worse behavior wise for him.
I understand they are concerned for his safety BUT A has autism. They are supposed to be inclusive and trained to handle kids like him. They know him. This summer program is run to provide ESY (extended school year) services over the summer to kids making the transition to school from pre-school. I watched the school system exclude N from too many things due to his quirks before I knew what his diagnosis was and that exclusion was inappropriate. This incident with A just brings back all of that. I'm hoping this is a one time only thing because if they start excluding A from more trips that are being done as part of the ESY program with the school district I'm going to file a complaint with the school district about this. Exclusion is not an ongoing solution to the issue and the school isnt paying for him to not be included in the program.
I thought school and the teachers were supposed to mold themselves and their teaching style to make a place for each kid in their institution of learning? Not that the kid was to be bent, molded, changed to fit the teachers mode of teaching. My child is a puzzle piece and you cant change the piece's shape to fit the puzzle , you have to find the right place/orientation, etc for the piece.
There has to be a place or a program to fit our puzzle pieces... the problem is I cant seem to find it. Which really makes me sad and disappointed in society.
Today was the big weekly field trip. They were going to a local-ish train yard for a ride. A was very excited as trains are his thing. ANY train floats his boat. They arrived there too late to ride the train so they opted to go to another attraction local to the yard. While at the other place A had issues listening, staying with the adults (he is a bit of a bolter , but this is nothing new, they KNEW this, its in his IEP they helped draft) and while on the way back to the center he opened his door that had not had the child locks activated on it scaring the driver. A never rides in my car without the locks activated so he really isn't used to the latch actually opening his door. But because of all this A has been un invited to the swim trip tomorrow to a local lake. We're in the northeast so you can imagine how hot it is right now , upper 90s and the dew point in the 70s makes for VERY uncomfortable weather. Add to that my last post where I mentioned just how much A loved swimming last week and you can imagine how upset I am about this. I was ciounting on the trip to help keep A cool since the heat only makes things much worse behavior wise for him.
I understand they are concerned for his safety BUT A has autism. They are supposed to be inclusive and trained to handle kids like him. They know him. This summer program is run to provide ESY (extended school year) services over the summer to kids making the transition to school from pre-school. I watched the school system exclude N from too many things due to his quirks before I knew what his diagnosis was and that exclusion was inappropriate. This incident with A just brings back all of that. I'm hoping this is a one time only thing because if they start excluding A from more trips that are being done as part of the ESY program with the school district I'm going to file a complaint with the school district about this. Exclusion is not an ongoing solution to the issue and the school isnt paying for him to not be included in the program.
I thought school and the teachers were supposed to mold themselves and their teaching style to make a place for each kid in their institution of learning? Not that the kid was to be bent, molded, changed to fit the teachers mode of teaching. My child is a puzzle piece and you cant change the piece's shape to fit the puzzle , you have to find the right place/orientation, etc for the piece.
There has to be a place or a program to fit our puzzle pieces... the problem is I cant seem to find it. Which really makes me sad and disappointed in society.
Friday, July 2, 2010
School is out, schools in
Well minor miracle happened in our town last month, N passed all his classes for the year. No summer school for him. A has started with his ESY (extended school year) program and is having a blast. N is starting to line up volunteering opportunities to keep him busy this summer(jobs are scarce in our area for teens with so many adults out of work, even the NT kids are having a hard time). Life I have to admit is far less stressful in the summer as I'm not fighting with N to do his work and picking up the pieces when the challenges of being an Aspie get to be too much or the local inbreeds bully him too much.
A is starting his medication trials this week. A has ADHD in addition to his autism and I'd rather try all the meds with a one month trial and get that out of the way than listen to years of the school going, Have you tried medication?. A quick yes we tried all the 3 major medications with no effect tends to shut them up pretty quickly. Were starting with Adderall and then next month we'll move on to Ritalin and then straterra. N had a horrible time on Wellbutrin with new and hard to handle behavioral issues while on it so we wont be trying that one with A. And that's pretty much the all the first line drugs used for ADHD. If they don't work I'm not prepared with a kindergartner to try 2nd line drugs with their more numerous side effects.
And on the behavioral/sensory front A has had a great June. He got his hair cut and didn't cry or flinch much while Dad was using the clippers on him. That was a first! and This week during his ESY program they took them swimming and he went in up to his chin (scared the adults a bit with his bravery) and even when he slipped and went under briefly he didnt get upset or not want to go back into the water! A officially likes swimming! so We're going to try the local swimming hole this holiday weekend. Its a resident only location so hopefully it wont be too crowded with riff raff.
I hope you all have a happy 4th of July this weekend and wish us luck as we try to conquer another sensory issue, the fireworks.
A is starting his medication trials this week. A has ADHD in addition to his autism and I'd rather try all the meds with a one month trial and get that out of the way than listen to years of the school going, Have you tried medication?. A quick yes we tried all the 3 major medications with no effect tends to shut them up pretty quickly. Were starting with Adderall and then next month we'll move on to Ritalin and then straterra. N had a horrible time on Wellbutrin with new and hard to handle behavioral issues while on it so we wont be trying that one with A. And that's pretty much the all the first line drugs used for ADHD. If they don't work I'm not prepared with a kindergartner to try 2nd line drugs with their more numerous side effects.
And on the behavioral/sensory front A has had a great June. He got his hair cut and didn't cry or flinch much while Dad was using the clippers on him. That was a first! and This week during his ESY program they took them swimming and he went in up to his chin (scared the adults a bit with his bravery) and even when he slipped and went under briefly he didnt get upset or not want to go back into the water! A officially likes swimming! so We're going to try the local swimming hole this holiday weekend. Its a resident only location so hopefully it wont be too crowded with riff raff.
I hope you all have a happy 4th of July this weekend and wish us luck as we try to conquer another sensory issue, the fireworks.
Sunday, June 13, 2010
One chapter has ended and another begins ....
Well A graduated preschool on Friday. Such a bag of mixed emotions. Sad that the little baby is really well and truly gone in the past. Happy that he has passed this milestone and is really ready for kindergarten and disappointed that when standing next to the other mostly NT (neurotypical) kids he really shows how different he is from them. As a parent you just want to make things better. Unfortunately you cant make autism better no matter how much effort or medicine or therapy you do. All you can do it work to give them coping techniques. And when things are more than usual, more noisy, more chaotic, etc, those techniques fail.
Fortunately his preschool actually specializes in kids with disabilities so when his coping techniques failed during the ceremony they handled it with grace, unlike another preschool in the area who failed miserably in regular situations with A that I hate to think what they would have done during the ceremony if he was still going there. He only went there 4 weeks before we were summarily "fired". Even though the school system was paying for their services they didn't bother to tell them until after my "lovely" confrontational interview in which I was told how horrible my child was and that they couldn't reasonably do what they had been hired to do, educate him and provide a setting for his therapy at school district expense. I get my "revenge" every year when same daycare asks for $$ from the town to help fund their programs. I and my husband vote no and let everyone we know, know why we vote no. They didn't get their money this year and for that we did a happy dance.
But now we play the waiting game with A. There is a new kindergarten being set up locally that would be perfect for A. A full day program (public school is only 2.5 hours) ,very small class size (under 10), 50/50 mix of NT and non NT kids and lots of adult support in the classroom to help the kiddos including an MD to help them on their social skills. But they haven't been rubber stamped by the state yet to be an official kindergarten so the school system cant make arrangements for placement there yet instead of the regular school. The program has been certified but as we all know govt rubber stamping can take a while and September will be here faster than we can imagine. So holding our breath and crossing all our toes and fingers for the moment seems to be the plan.
I dread A going to the regular school system either this coming year or the year after. He looks like N so much that I'm afraid bias will be preset for him. I've already run into teachers at the school who have commented on how much they look alike. N didn't get diagnosed on the spectrum until he was 10, and the school didn't acknowledge the diagnosis until he was 13 so he had a very rough elementary school experience. I dread to think what will happen when these same "professionals" ( when a teacher actually laughs at a student and not in a nice way they have lost any respect I have for them) have my younger and much more disabled son in their classrooms and think because they look alike they are the same.
My 2 children are very different and its not just their level of disability. N is lazy (something the school actually helped to teach him by just passing him along to the next grade instead of making him complete things) where as A is very willing to work to learn. N didn't have speech difficulties and A has verbal apraxia. N wasn't reading when he entered kindergarten, A is reading and doing mental addition and subtraction and can tell time like no other. In someways I think A is actually smarter than his brother, and N tested just under Mensa qualified at age 7 so he's no dummy either. With A's sensitivity to sound and light a full school with hundreds of screaming kids at lunch , recess and dismissal time will be beyond challenging for him and I have real fears that the school will be less than understanding.
And so I wait and hope that at least for this coming school year A will be placed in the progressive and proactive new kindergarten and pray that I will be able to negotiate a safe passage through the public schools when that times comes for A. N on the other hand I'm just hoping that he passes all his classes this year as I sit and keep prompting him every 10 minutes to write his end of the year joint English and world cultures paper/project.
Fortunately his preschool actually specializes in kids with disabilities so when his coping techniques failed during the ceremony they handled it with grace, unlike another preschool in the area who failed miserably in regular situations with A that I hate to think what they would have done during the ceremony if he was still going there. He only went there 4 weeks before we were summarily "fired". Even though the school system was paying for their services they didn't bother to tell them until after my "lovely" confrontational interview in which I was told how horrible my child was and that they couldn't reasonably do what they had been hired to do, educate him and provide a setting for his therapy at school district expense. I get my "revenge" every year when same daycare asks for $$ from the town to help fund their programs. I and my husband vote no and let everyone we know, know why we vote no. They didn't get their money this year and for that we did a happy dance.
But now we play the waiting game with A. There is a new kindergarten being set up locally that would be perfect for A. A full day program (public school is only 2.5 hours) ,very small class size (under 10), 50/50 mix of NT and non NT kids and lots of adult support in the classroom to help the kiddos including an MD to help them on their social skills. But they haven't been rubber stamped by the state yet to be an official kindergarten so the school system cant make arrangements for placement there yet instead of the regular school. The program has been certified but as we all know govt rubber stamping can take a while and September will be here faster than we can imagine. So holding our breath and crossing all our toes and fingers for the moment seems to be the plan.
I dread A going to the regular school system either this coming year or the year after. He looks like N so much that I'm afraid bias will be preset for him. I've already run into teachers at the school who have commented on how much they look alike. N didn't get diagnosed on the spectrum until he was 10, and the school didn't acknowledge the diagnosis until he was 13 so he had a very rough elementary school experience. I dread to think what will happen when these same "professionals" ( when a teacher actually laughs at a student and not in a nice way they have lost any respect I have for them) have my younger and much more disabled son in their classrooms and think because they look alike they are the same.
My 2 children are very different and its not just their level of disability. N is lazy (something the school actually helped to teach him by just passing him along to the next grade instead of making him complete things) where as A is very willing to work to learn. N didn't have speech difficulties and A has verbal apraxia. N wasn't reading when he entered kindergarten, A is reading and doing mental addition and subtraction and can tell time like no other. In someways I think A is actually smarter than his brother, and N tested just under Mensa qualified at age 7 so he's no dummy either. With A's sensitivity to sound and light a full school with hundreds of screaming kids at lunch , recess and dismissal time will be beyond challenging for him and I have real fears that the school will be less than understanding.
And so I wait and hope that at least for this coming school year A will be placed in the progressive and proactive new kindergarten and pray that I will be able to negotiate a safe passage through the public schools when that times comes for A. N on the other hand I'm just hoping that he passes all his classes this year as I sit and keep prompting him every 10 minutes to write his end of the year joint English and world cultures paper/project.
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