After yesterday's post, some rather inspiring things happened. I spoke with a lady at the Illinois Attorney General's office. She and I discussed our dog, Thor. We talked about the fact that he's mostly an ESA for us, but that he wakes Jacob up in the mornings since he doesn't respond to alarms and he changes Jacob's focus during a meltdown thus preventing self-harm. She told me that since he performs at least TWO tasks that are specific to Jacob's disability, then he is actually considered to be a service dog. I said "But he doesn't qualify for certification because he's too friendly and a little barky." She told me that certification isn't REQUIRED. She also told me that schools, businesses, and housing facilities aren't allowed to ask about an animal's certification, training, or the person's disability. They are only allowed to ask if the dog is a service animal, and what tasks he has been trained to perform for the disable individual. Excited, I emailed my husband and our attorney.
Fast forward to this morning. The husband and I had a conference call with our attorney. He disagrees with the Attorney General's office's interpretation of the law. He said that this is a litigation point, and that he's not comfortable with going to bat over this. He also said that since the only point of disagreement between us and the District seems to be the dog, he's not comfortable with going to Due Process with us because we don't have a case. We reminded him that the disagreement is that they DO NOT have a Crisis plan in place, and they've ignored the numerous letters from Jacob's medical team. His only response was "Well, they feel like they have an adequate plan in place. We don't really have room to fight. But you are welcome to find another attorney who will fight these points for you. I'm just not comfortable with it."
What the ever living FRACK?!? We told him when we HIRED him that we were prepared to litigate, go to due process, and whatever it takes to ensure our son's safety in the school setting. We were upfront and honest, and he said that he was on board. NOW, after us paying him thousands of dollars, HE'S NOT COMFORTABLE WITH FIGHTING FOR THIS?!?!
So, on to find another attorney. On to contacting other resources. On to .... who knows what. Home schooling?
FYI ...
http://www.ag.state.il.us/rights/servanimals.html
http://www.isbe.net/spec-ed/html/civil_rights_usde.htm
Wednesday, October 21, 2015
Tuesday, October 20, 2015
Dealing with Discrimination in my school district ...
It's been a while since my last blog post, and with good reason. Here's the basic timeline of events before I get into the nitty gritty of today's post.
Existing history:
Summer 2010 - Jacob was diagnosed with Autism Spectrum Disorder.
Summer 2013 - Little Friends Center for Autism did a comprehensive evaluation of Jacob. During this evaluation, they stated that he seems to combine fantasy and reality, and that he has a fascination with guns and violence. They identified the fact that his ability to cope with frustrations is limited, and that he needs support in this area. They stated that it will be important to provide Jacob's educational team with extensive training on ASD in bright children in order for them to fully meet his educational, social and emotional needs. They stated that children like Jacob can be "foolers" in that their behavioral difficulties often appear to be willful and fully informed acts. However, with close examination, skill deficits more often than not underline negative behaviors. They also stated that Jacob tends to result to self-harm when overly stressed, and that he has the potential to develop severe emotional issues should he not be properly supported.
August 2013 - Jacob re-entered the public school setting after having been home schooled for a year.
October 2013 - Jacob was hospitalized for suicidal and homicidal ideation due to stress in the school environment.
February 2014 - Jacob was Hospitalized for suicidal and homicidal ideation due to stress in the school environment.
March 2014 - Parents and doctors requested therapy day school placement for Jacob. District denied request.
August 2014 - School began.
September 2014 - Jacob was Hospitalized for suicidal and homicidal ideation due to stress in the school environment.
September 2014 - District finally agrees to put Jacob in a self contained (special education) class in a different school.
August 19, 2015 - School started (Welcome to middle school .....)
August 28 - School called saying that Jacob was talking about hurting himself, broke his glasses, and was demanding that they allow him to call me. After speaking to his psychiatrist, she decided that he needed to stay home until an *appropriate* IEP was put in place.
September 3 - 2 1/2 hour long IEP meeting where nothing is resolved, but we agree to send him back to school on the 8th. We also agree to meet again on September 14th.
September 8 - Jacob returns to school.
September 9 - School nurse called. Jacob is complaining of an upset stomach, headache, and generally not feeling well. I spoke to him and could hear the stress in his voice. I agree to pick him up to prevent him from deteriorating.
- We receive an email from the district informing us that their attorney will be at the meeting with them on the 14th, and they need us to sign a 10 day notice waiver to allow her to attend.
September 10 - Jacob returns to school.
September 11 - School calls saying that Jacob only attended his first two classes and was talking about suicide again. This time they did a risk assessment, and he scored an 8 out of 9 for moderate risk. I let them know that I'm on my way and that I'm calling his psychiatrist. His psychiatrist says to take him to the ER to be evaluated. The ER evaluates him *4 hours* after we arrive. By this time, I have him completely calm and none of us feel like he's a harm to himself or others. We get to go home.
September 14 - 4 hour long IEP meeting where nothing is resolved yet. They don't seem to see the concern since he wasn't hospitalized this time. They ignore the history and say "But this is a new year and a new team. You have to give us a chance." We let them know that we can not knowingly put our child back into the same situation without safety points put in place. We agree to reassessments, but they've not told us how this will happen without him being in school. They *do* inform us that they can not and will not entertain the idea of access to an animal. Especially not the very well trained Emotional Support dog that we already have.
September 16 - We hire a lawyer.
September 25 - District tutor begins working with Jacob. She's only capable of getting him to work for 30 minutes at a time with her.
October 2 - Tutor quits.
October 5 - 2 hour long IEP meeting WITH lawyers where nothing gets resolved. We agree to meet on October 8th to review a charted out view of what the school can provide and what Jacob's needs are. We've now provided them with a letter from his psychiatrist stating that she's prescribing therapeutic day school placement, home bound instruction until such time as he's properly placed, and access to a therapy / support animal.
October 8 - 2 hour meeting where they provide *nothing* new, and we all agree that they can't provide the Crisis Intervention that Jacob *needs* which includes access to a furry animal. The District representative informs us that she has the District's recommendation, but that their lawyer has to discuss it with our lawyer.
Current situation and the true existence of discrimination:
Jacob's psychiatrist has called him "Twice Exceptional, but so very Autistic" because of his verbal skills. He's incredibly intelligent, quite amazing, and has the ability to put things to words that flow through his mind. She also stated that this makes his Autism seem more invisible, but it's so very much there. Now, comparing this conversation with the mess we've seen so far from the district since Jacob's Autism diagnosis in 2010, it fits perfectly with their lack of desire to meet his needs where they actually ARE. They are willing to do the bare minimum, and make it seem like they are going above and beyond to do things that aren't really needed. No matter what the medical documentation says.
His doctor says that he *NEEDS* access to a therapy dog and a therapeutic day school. The District says "He doesn't present to US as a child that has these needs. We feel like we can adequately help him in his current setting." We say "But you didn't and couldn't. He's already been to the ER once this year because you couldn't meet his needs." They say "Oh. But he wasn't hospitalized, so it's really not as bad as you are saying." We point to the letter from his psychiatrist saying that another hospitalization is DETRIMENTAL to his mental health and won't do anything anyway since it's only geared toward adjusting his medication and his medication is already at the highest therapeutic dose that his body can handle. They say "Well, that's nice. But it's only a recommendation and we aren't required by law to follow a mere DOCTOR'S recommendation."
So, they've decided in their non-medical minds that they are more equipped to decide what my son needs. They've decided that since the school he's assigned to doesn't have animals on site and the teacher is unwilling to have an animal in her room, then they aren't able to meet this accommodation that they really don't feel like he needs. When I offered to bring our CERTIFIED and WELL TRAINED Emotional Support dog to Jacob and have them sit in the car for 5 minutes so that Jacob could go back to class, they decided that they felt like that would disrupt his day too much and is an inappropriate request on our part.
Time and again, the District has decided that Jacob doesn't really need the things we've said he does, and time and again it's resulted in him going to the ER for suicidal ideation. Time and again they've discriminated against him because his Autism is balanced by his giftedness. Time and again, they ask us to allow them another chance, and every single time, HE's the one who pays for it. It's so very frustrating to see that the school district doesn't recognize the pattern and they they continually ignore medical documentation in favor of their own pre-conceived ideas about Autism. Seeing their continued discrimination against him because he has above average intelligence and abilities is heart breaking. I want my son to be in a school that will give him the education he deserves with the support he needs, and will keep him SAFE. I just want my son to be SAFE at school. Is that too much to ask?
Existing history:
Summer 2010 - Jacob was diagnosed with Autism Spectrum Disorder.
Summer 2013 - Little Friends Center for Autism did a comprehensive evaluation of Jacob. During this evaluation, they stated that he seems to combine fantasy and reality, and that he has a fascination with guns and violence. They identified the fact that his ability to cope with frustrations is limited, and that he needs support in this area. They stated that it will be important to provide Jacob's educational team with extensive training on ASD in bright children in order for them to fully meet his educational, social and emotional needs. They stated that children like Jacob can be "foolers" in that their behavioral difficulties often appear to be willful and fully informed acts. However, with close examination, skill deficits more often than not underline negative behaviors. They also stated that Jacob tends to result to self-harm when overly stressed, and that he has the potential to develop severe emotional issues should he not be properly supported.
August 2013 - Jacob re-entered the public school setting after having been home schooled for a year.
October 2013 - Jacob was hospitalized for suicidal and homicidal ideation due to stress in the school environment.
February 2014 - Jacob was Hospitalized for suicidal and homicidal ideation due to stress in the school environment.
March 2014 - Parents and doctors requested therapy day school placement for Jacob. District denied request.
August 2014 - School began.
September 2014 - Jacob was Hospitalized for suicidal and homicidal ideation due to stress in the school environment.
September 2014 - District finally agrees to put Jacob in a self contained (special education) class in a different school.
August 19, 2015 - School started (Welcome to middle school .....)
August 28 - School called saying that Jacob was talking about hurting himself, broke his glasses, and was demanding that they allow him to call me. After speaking to his psychiatrist, she decided that he needed to stay home until an *appropriate* IEP was put in place.
September 3 - 2 1/2 hour long IEP meeting where nothing is resolved, but we agree to send him back to school on the 8th. We also agree to meet again on September 14th.
September 8 - Jacob returns to school.
September 9 - School nurse called. Jacob is complaining of an upset stomach, headache, and generally not feeling well. I spoke to him and could hear the stress in his voice. I agree to pick him up to prevent him from deteriorating.
- We receive an email from the district informing us that their attorney will be at the meeting with them on the 14th, and they need us to sign a 10 day notice waiver to allow her to attend.
September 10 - Jacob returns to school.
September 11 - School calls saying that Jacob only attended his first two classes and was talking about suicide again. This time they did a risk assessment, and he scored an 8 out of 9 for moderate risk. I let them know that I'm on my way and that I'm calling his psychiatrist. His psychiatrist says to take him to the ER to be evaluated. The ER evaluates him *4 hours* after we arrive. By this time, I have him completely calm and none of us feel like he's a harm to himself or others. We get to go home.
September 14 - 4 hour long IEP meeting where nothing is resolved yet. They don't seem to see the concern since he wasn't hospitalized this time. They ignore the history and say "But this is a new year and a new team. You have to give us a chance." We let them know that we can not knowingly put our child back into the same situation without safety points put in place. We agree to reassessments, but they've not told us how this will happen without him being in school. They *do* inform us that they can not and will not entertain the idea of access to an animal. Especially not the very well trained Emotional Support dog that we already have.
September 16 - We hire a lawyer.
September 25 - District tutor begins working with Jacob. She's only capable of getting him to work for 30 minutes at a time with her.
October 2 - Tutor quits.
October 5 - 2 hour long IEP meeting WITH lawyers where nothing gets resolved. We agree to meet on October 8th to review a charted out view of what the school can provide and what Jacob's needs are. We've now provided them with a letter from his psychiatrist stating that she's prescribing therapeutic day school placement, home bound instruction until such time as he's properly placed, and access to a therapy / support animal.
October 8 - 2 hour meeting where they provide *nothing* new, and we all agree that they can't provide the Crisis Intervention that Jacob *needs* which includes access to a furry animal. The District representative informs us that she has the District's recommendation, but that their lawyer has to discuss it with our lawyer.
Current situation and the true existence of discrimination:
Jacob's psychiatrist has called him "Twice Exceptional, but so very Autistic" because of his verbal skills. He's incredibly intelligent, quite amazing, and has the ability to put things to words that flow through his mind. She also stated that this makes his Autism seem more invisible, but it's so very much there. Now, comparing this conversation with the mess we've seen so far from the district since Jacob's Autism diagnosis in 2010, it fits perfectly with their lack of desire to meet his needs where they actually ARE. They are willing to do the bare minimum, and make it seem like they are going above and beyond to do things that aren't really needed. No matter what the medical documentation says.
His doctor says that he *NEEDS* access to a therapy dog and a therapeutic day school. The District says "He doesn't present to US as a child that has these needs. We feel like we can adequately help him in his current setting." We say "But you didn't and couldn't. He's already been to the ER once this year because you couldn't meet his needs." They say "Oh. But he wasn't hospitalized, so it's really not as bad as you are saying." We point to the letter from his psychiatrist saying that another hospitalization is DETRIMENTAL to his mental health and won't do anything anyway since it's only geared toward adjusting his medication and his medication is already at the highest therapeutic dose that his body can handle. They say "Well, that's nice. But it's only a recommendation and we aren't required by law to follow a mere DOCTOR'S recommendation."
So, they've decided in their non-medical minds that they are more equipped to decide what my son needs. They've decided that since the school he's assigned to doesn't have animals on site and the teacher is unwilling to have an animal in her room, then they aren't able to meet this accommodation that they really don't feel like he needs. When I offered to bring our CERTIFIED and WELL TRAINED Emotional Support dog to Jacob and have them sit in the car for 5 minutes so that Jacob could go back to class, they decided that they felt like that would disrupt his day too much and is an inappropriate request on our part.
Time and again, the District has decided that Jacob doesn't really need the things we've said he does, and time and again it's resulted in him going to the ER for suicidal ideation. Time and again they've discriminated against him because his Autism is balanced by his giftedness. Time and again, they ask us to allow them another chance, and every single time, HE's the one who pays for it. It's so very frustrating to see that the school district doesn't recognize the pattern and they they continually ignore medical documentation in favor of their own pre-conceived ideas about Autism. Seeing their continued discrimination against him because he has above average intelligence and abilities is heart breaking. I want my son to be in a school that will give him the education he deserves with the support he needs, and will keep him SAFE. I just want my son to be SAFE at school. Is that too much to ask?
Wednesday, April 9, 2014
Updates and Service Dogs
It's been a while since my last post, and I'm sorry for that. Life is just so insane some days, and keeping up with the housework can be a major chore. BUT! I have a moment now, so an update is in order.
Bear has graduated out of OT for good. He has accomplished all of his goals, and has made his therapist SUPER proud. He's still in PT, still has his Psychiatrist, and is now seeing a Psychologist who specializes in kids like Bear, and uses play therapy to help him work thorough some anger issues. We are really proud of him and the progress he's made. We HOPE that the things we are now seeing will prove to be the building blocks for major progress in all areas.
The next thing on my to do list is to find and adopt a forever dog whom I will train to be an Autism Service Dog for Bear. The main issue I'm having is the financial aspect. Yes, my husband brings home a decent paycheck, but with all of the medical expenses, house repairs, and now car repairs .... well ... we are in the hole by a LOT every month. Will having a dog alleviate any of this? Not for a while. But a service dog will help him regulate faster, will be able to help monitor his reactions to medications, and will help motivate him to get outside to play and walk around. So far, all of his therapists have said that they feel that this is the logical next step in our care for him. Now we just need to be able to afford the adoption fees, training classes, and certifications after training.
We may need some help with this.
Bear has graduated out of OT for good. He has accomplished all of his goals, and has made his therapist SUPER proud. He's still in PT, still has his Psychiatrist, and is now seeing a Psychologist who specializes in kids like Bear, and uses play therapy to help him work thorough some anger issues. We are really proud of him and the progress he's made. We HOPE that the things we are now seeing will prove to be the building blocks for major progress in all areas.
The next thing on my to do list is to find and adopt a forever dog whom I will train to be an Autism Service Dog for Bear. The main issue I'm having is the financial aspect. Yes, my husband brings home a decent paycheck, but with all of the medical expenses, house repairs, and now car repairs .... well ... we are in the hole by a LOT every month. Will having a dog alleviate any of this? Not for a while. But a service dog will help him regulate faster, will be able to help monitor his reactions to medications, and will help motivate him to get outside to play and walk around. So far, all of his therapists have said that they feel that this is the logical next step in our care for him. Now we just need to be able to afford the adoption fees, training classes, and certifications after training.
We may need some help with this.
Monday, August 5, 2013
Total Acceptance is Hard
I'm not great at staying on top of my blog. Especially when we have SO much going on all at once. But, I'm at a point right this second where I need to share my thoughts and feelings on our most recent bout of diagnostic sessions.
We've known for two years now that our son has Autism. We've accepted that fact ... or so I thought. In order for our son to be accepted into the Social Skills groups at Little Friends Center for Autism, he had to go through yet another round of diagnostic tests. His school gave him the ADOS1 test in May, so Little Friends gave him the ADOS2 among other tests.
You know how it is when you KNOW something in your core, but you've not voiced it to anyone because you are hoping that you are just being too harsh? You are comparing your kid to every single other kid out there and keep thinking "Well, he does pretty well with this situation even though he needs to avoid that other situation." But no matter what, you find yourself hoping that maybe you are seeing something that isn't there because you are striving so hard to help him fit in more. I'm here to tell you that KNOWING it isn't the same as seeing it on paper or hearing it from someone else's mouth.
There is nothing in my experiences leading up to that meeting a week ago today that prepared me for the way it would feel to see everything I've secretly known about my son written out on that piece of paper that was shoved in front of me. There was nothing to prepare me for the sudden yanking of the carpet from under me, and the ripping and tearing of my innards as I read the words "Classic High Functioning Autism", "Gross Motor Skills equivalent to 5 yrs 3 mos", "Fine Motor Skills equivalent to 3 yrs 7 mos", and "Social Skills equivalent to 5 yrs 6 mos". Sure, his speech is at 10 yrs 3 mos and I have him reading at a 6th grade level, but that's only a small part of what he NEEDS to make it through life today. Then the other shoe dropped. I was shown his sensory scores. He has one area that is "slightly at risk", where every single other one was "at high risk" .. meaning his ability to function in an environment that has a lot of sounds, new smells, and ANY activity around him is next to zero. This means that his ability to participate in a mainstream classroom doesn't exist. He needs to be in a smaller classroom with an aid to help keep him on task.
Then .... suddenly ... the train came out of nowhere and hit me square in the heart. Our son has always had this fascination with explosions. I've always blown that off as him just being a boy and doing what boys do. That at least SOMETHING was "normal". Nope. Not at all. Not "normal" because he can't STOP talking about explosions, bombs, shooting things, and bad guys dying. I was told that the kids they see that have this type of fascination are the ones they see end up being suspended from school, put in jail for making violent threats (or what people perceive to be a violent threat), or dead because they are experimenting with explosive devices, guns, or something similar.
I cried all day after that appointment. My husband held me, told me that we'll face this together, and that we'll make sure that our son gets the support he needs so that he doesn't become a statistic. I'm still having a hard time with everything we learned, but I refuse to allow our boy see how completely devastated I am over what the doctor said. Instead, I am becoming something of a Helicopter Mom. I have to. There simply isn't another choice available to me because my son, my baby needs me to be on top of every little thing and help him learn how to be him while still "fitting in" with everyone else.
We've known for two years now that our son has Autism. We've accepted that fact ... or so I thought. In order for our son to be accepted into the Social Skills groups at Little Friends Center for Autism, he had to go through yet another round of diagnostic tests. His school gave him the ADOS1 test in May, so Little Friends gave him the ADOS2 among other tests.
You know how it is when you KNOW something in your core, but you've not voiced it to anyone because you are hoping that you are just being too harsh? You are comparing your kid to every single other kid out there and keep thinking "Well, he does pretty well with this situation even though he needs to avoid that other situation." But no matter what, you find yourself hoping that maybe you are seeing something that isn't there because you are striving so hard to help him fit in more. I'm here to tell you that KNOWING it isn't the same as seeing it on paper or hearing it from someone else's mouth.
There is nothing in my experiences leading up to that meeting a week ago today that prepared me for the way it would feel to see everything I've secretly known about my son written out on that piece of paper that was shoved in front of me. There was nothing to prepare me for the sudden yanking of the carpet from under me, and the ripping and tearing of my innards as I read the words "Classic High Functioning Autism", "Gross Motor Skills equivalent to 5 yrs 3 mos", "Fine Motor Skills equivalent to 3 yrs 7 mos", and "Social Skills equivalent to 5 yrs 6 mos". Sure, his speech is at 10 yrs 3 mos and I have him reading at a 6th grade level, but that's only a small part of what he NEEDS to make it through life today. Then the other shoe dropped. I was shown his sensory scores. He has one area that is "slightly at risk", where every single other one was "at high risk" .. meaning his ability to function in an environment that has a lot of sounds, new smells, and ANY activity around him is next to zero. This means that his ability to participate in a mainstream classroom doesn't exist. He needs to be in a smaller classroom with an aid to help keep him on task.
Then .... suddenly ... the train came out of nowhere and hit me square in the heart. Our son has always had this fascination with explosions. I've always blown that off as him just being a boy and doing what boys do. That at least SOMETHING was "normal". Nope. Not at all. Not "normal" because he can't STOP talking about explosions, bombs, shooting things, and bad guys dying. I was told that the kids they see that have this type of fascination are the ones they see end up being suspended from school, put in jail for making violent threats (or what people perceive to be a violent threat), or dead because they are experimenting with explosive devices, guns, or something similar.
I cried all day after that appointment. My husband held me, told me that we'll face this together, and that we'll make sure that our son gets the support he needs so that he doesn't become a statistic. I'm still having a hard time with everything we learned, but I refuse to allow our boy see how completely devastated I am over what the doctor said. Instead, I am becoming something of a Helicopter Mom. I have to. There simply isn't another choice available to me because my son, my baby needs me to be on top of every little thing and help him learn how to be him while still "fitting in" with everyone else.
Thursday, April 5, 2012
Friends and Meltdowns
My son has SO much difficulty with social situations. Yes, it's one of the many speed bumps that come with Asperger's Syndrome, but that doesn't make it any easier. He knows the rules I have for him and he knows the consequences of breaking those rules. As such, he abides by those rules as if his life depends on it. His friends, however, are pushing boundaries as kids their age normally do. He doesn't know how to deal with this and ends up melting down when they try to push one of my boundaries. This has been happening every day lately.
There's more to this .. but he's having a meltdown right now.
There's more to this .. but he's having a meltdown right now.
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