It's Monday morning and my week looks very busy, except for this morning, when I should be preparing for the week. And yet, I feel a bit frozen, frozen by the anxiety...Nickolas has 3 doctors appointments this week, Addison has a dentist appointment, we have a Positive Parenting class tonight and then the big one, Nickolas's IEP meeting on Thursday. The IEP meeting is the one that has me most anxious. I am as prepared as I can be without having a copy of the report. I spent days studying the IDEA laws, I spent hours on the phone, and I have enough paperwork to support our sons diagnosis and needs. So now why can't I get my emotions in line. I keep breathing and hoping for clarity and calmness. Instead I feel like a ball of stress, there is a knot in my stomach and I am frozen. I wonder how other parents deal with this moment?
At this moment I am formulating a plan, a plan to defrost. I will finish this short blog post, I will then read some of my favorite funny websites (laughter is the greatest cure, right?), then I will gather all my paper work on the table finish organizing it in a cohesive manner, start my crock pot (Bean and Tater Tot Casserole, comfort food). And then possibly go to lunch with my dad after his physical therapy appointment. Finally take Nickolas to his appointment, come home for dinner and then off to Positive Parenting class. If I follow this I should have a very productive day, not lost in my head stressing about a meeting that I have no way of knowing if it will be as bad as my imagination portrays it.
Monday, January 23, 2012
Saturday, January 21, 2012
Frustration and where it leads
If you read my post Will I Break , you know how I am feeling. I want you to also know that I am not just ranting. I have called every resource I could locate, and a few of these contacts have yielded a great deal of knowledge.
What I recommend when in a situation like mine, don't stop telling your story, talk to everyone you can, search the Internet for resources, use websites like My Autism Team , AutismWeb, and search your local Autism support groups and resources. Two local groups in my area are SELPA and Matrix. Without these groups I would probably be lost.
In the days since I originally wrote "Will I Break" I have spent hours on the phone, on the Internet and reading. I have an amazing book I got from our local library "The Complete IEP Guide, How to Advocate for Your Special Needs Child". I also made a couple of connections through some phone calls, one in particular that has already pushed my child's district to make some positive moves in my sons direction. This person happened to know all the people I am dealing with in my child's district, as well he is very familiar with my child's condition. He was able to make a call on my behave and it seemed to help a little. My best piece of advise find this person in your area, there is always at least one, and it may take making dozens of phone calls but it will be worth it.
(this next paragraph is purely my opinion)
I believe this is a game (not a game I wanted to play) but a game none the less. My husband refers to this is Chess, since I have never played Chess, I am not sure of the similarities but I do know it feels like a game, the one with the best hand wins. I asked the school to provide what I know is needed for my child. They looked at their budget, then they make me jump through more hoops than a circus performer...hoping this will wear me out. I keep going. They bring in the "difficult person" the one that says "your child is doing fine, look there are so many more children that have it worse then your child, and all kids have difficulties with school at some point". I keep going, I push back saying, "I don't care what you think, my child is my concern and he needs help" their response: make me jump through more hoops, then wait, and wait (am I tired yet, will I break). Here is where they hope I will give up, give in. And when I don't, they offer me a carrot, but I want the whole salad bar. And the game continues...I begin to wonder, are they hoping the school year will end before we come to some conclusion? Here's the deal, I will keep fighting, I will keep fighting because this is my child! I think they forget we are talking about a child and not a line item, a budget number...
It shouldn't be this hard to advocate for your child's education, and for us it wasn't difficult until we moved to California. But I know it's not just California this is happening all over the country, not to everyone but to more people than it should.
Keep fighting, there are lots of free services out there for your child, and some low cost options as well, and if you are a parent with money a good lawyer will work too. Keep fighting!
I know we need to change this system, but before we think nation wide, for me it's about my child. Someday I hope to be in a position to advocate for all children, a position to help change a broken process.
I am in the beginning of this process, although I am years into it, there will be a lot to discover along the way, and hopefully new people that come into our lives and provide insight that would otherwise have gone unheard. I am open to reading your stories and suggestions. I am not an expert. Lifelong learning is my goal, and in the area of special education, IEP's I have a lot to learn.
What I recommend when in a situation like mine, don't stop telling your story, talk to everyone you can, search the Internet for resources, use websites like My Autism Team , AutismWeb, and search your local Autism support groups and resources. Two local groups in my area are SELPA and Matrix. Without these groups I would probably be lost.
In the days since I originally wrote "Will I Break" I have spent hours on the phone, on the Internet and reading. I have an amazing book I got from our local library "The Complete IEP Guide, How to Advocate for Your Special Needs Child". I also made a couple of connections through some phone calls, one in particular that has already pushed my child's district to make some positive moves in my sons direction. This person happened to know all the people I am dealing with in my child's district, as well he is very familiar with my child's condition. He was able to make a call on my behave and it seemed to help a little. My best piece of advise find this person in your area, there is always at least one, and it may take making dozens of phone calls but it will be worth it.
(this next paragraph is purely my opinion)
I believe this is a game (not a game I wanted to play) but a game none the less. My husband refers to this is Chess, since I have never played Chess, I am not sure of the similarities but I do know it feels like a game, the one with the best hand wins. I asked the school to provide what I know is needed for my child. They looked at their budget, then they make me jump through more hoops than a circus performer...hoping this will wear me out. I keep going. They bring in the "difficult person" the one that says "your child is doing fine, look there are so many more children that have it worse then your child, and all kids have difficulties with school at some point". I keep going, I push back saying, "I don't care what you think, my child is my concern and he needs help" their response: make me jump through more hoops, then wait, and wait (am I tired yet, will I break). Here is where they hope I will give up, give in. And when I don't, they offer me a carrot, but I want the whole salad bar. And the game continues...I begin to wonder, are they hoping the school year will end before we come to some conclusion? Here's the deal, I will keep fighting, I will keep fighting because this is my child! I think they forget we are talking about a child and not a line item, a budget number...
It shouldn't be this hard to advocate for your child's education, and for us it wasn't difficult until we moved to California. But I know it's not just California this is happening all over the country, not to everyone but to more people than it should.
Keep fighting, there are lots of free services out there for your child, and some low cost options as well, and if you are a parent with money a good lawyer will work too. Keep fighting!
I know we need to change this system, but before we think nation wide, for me it's about my child. Someday I hope to be in a position to advocate for all children, a position to help change a broken process.
I am in the beginning of this process, although I am years into it, there will be a lot to discover along the way, and hopefully new people that come into our lives and provide insight that would otherwise have gone unheard. I am open to reading your stories and suggestions. I am not an expert. Lifelong learning is my goal, and in the area of special education, IEP's I have a lot to learn.
Friday, January 20, 2012
Will I Break...
We have been trying to get Nickolas special education services for some time. We had and IEP (individual education plan) for him when we moved to California but it was dismissed when he went into the California educational system. We are now trying to get it reinstated. He has high functioning autism. He is very smart above grade level in every area, except social and emotional...in these areas he is many years behind. He has had a very ruff 1st grade, getting kicked out of his first school and at the new school they seem to be refusing to acknowledge he has any problems. In his current school, almost everyday he goes to the office several times a day...mostly to hide, he cries often most of the day and has been hit and chased by other kids. His teacher says he needs a full time aid, we would love to see him get a full time aid...the district says they see nothing wrong with him and there is no need to provide him with special services.
I am outraged!
He has a diagnosis given to us by a regional center (the state)!, and his own doctors...Yet the district psychologist says "I don't think he even has autism" This is where my mother instincts kick in and I want to scream.
It's a game, the school doesn't want to spend money to help my son, if they acknowledge he has a problem, they have to spend the money. So they deny it, they hope we just give up and go away.
I AM NOT GOING TO BACK DOWN!!! I will take this to court if I have too (I need strength...please send me some). This is my son, the little boy who is almost always happy, except at school, almost everyday I pick him up he is in tears, everyday I hear the same things from his teacher, another difficult day, very emotional, spent time in the office.
He is only 7, he is only in 1st grade, he should be having some fun, art, playing with friends, learning new games, etc. It shouldn't be this bad.
I know I am right, I know my son needs help.
I admit, when I get angry I cry, I hate this about me, I wish that when I was angry I could yell, or say mean and witty things...but no I cry. I am hoping I can find somewhere inside myself to stay calm and collect and not cry as I face the school...they don't care about me or my son, they only care about their budget...I need to remember that. I am not talking about his teacher or even the principle, these people seem to want to help my son...it's the district they are only in it to save their dollars. My son is not a budget number, he is a little boys who loves learning but needs help to be able to handle school, school is a very social place and it is very scary for this little guy.
The saga continues...the district has until the 30th of this month to reply, since we are pretty sure we know what they will say, our next plan of action will be to figure out our legal rights and move forward....
Not, Just Another Jen
Why Blog? Aren't there already too many blogs.... So why? Maybe I could share a fresh perspective to raising twins, and raising twins with Autism....maybe, but I think, for now, I am going to focus on doing this more for myself and if someone finds it helpful, interesting, or possibly fun, then great.
Why not, just another Jen? We all like to believe ourselves to be individuals, to be unique, and in some ways we may be, but I believe that I am not the only one living this life, having similar experiences, thoughts, frustrations, and feelings.
I haven't planned this blog, I have no real intentions, only that, my current thought is that I will write about my experiences with twins, autism, being a mom and being about being a person who is still trying to figure out what I am going to be when I grow up.
If you are interested in what Autism is in my family, welcome; if you are interested in my thoughts, welcome;
if you are here to critique my grammar, spelling or to knock what my thoughts...find another blog :-)
Why not, just another Jen? We all like to believe ourselves to be individuals, to be unique, and in some ways we may be, but I believe that I am not the only one living this life, having similar experiences, thoughts, frustrations, and feelings.
I haven't planned this blog, I have no real intentions, only that, my current thought is that I will write about my experiences with twins, autism, being a mom and being about being a person who is still trying to figure out what I am going to be when I grow up.
If you are interested in what Autism is in my family, welcome; if you are interested in my thoughts, welcome;
if you are here to critique my grammar, spelling or to knock what my thoughts...find another blog :-)
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