By now you all know how bad the Cat's last school was. How much I fought to even get her to recognize the diagnosis. How difficult it was every step of the way to get the PTB to provide the needed services. I finally got tired of it.
I could not keep fighting with them any more. I had nothing left. So I played my last card. I contacted the DLC and I contacted the Director of Special Ed for the Northeast Region of the ASD. I requested that a district rep be at the transition meeting I wanted to have before the Cat was discharged. The district complied. The DLC is investigating somethings that occurred and that will be another story.
In the mean time the school had scheduled an FBA (read this to see how it went). After that I was done. There was no way in hell that my child would go back to that school. It would happen over my dead body. I had tried so hard. I did everything that was asked of my (except for shutting up and going away). I came whenever I was called. I was always civil and friendly. I let them know if concerns I had prior to contacting someone with the district.
None of it worked. Every time I turned around I ran face first into a steel reinforced brick wall. Every time I thought things would get better again I found myself banging my head against that wall. The PTB just would not work WITH me.
So I told the district rep that I wanted another school. I listed out why I was not comfortable sending the Cat back to the school from hell. I had all my documentation. I had done my research, I knew my rights.But I still had to play nice. So when she asked how firm I was on I said I would see how the meeting went and decide then,
The meeting was a joke. Everything was postponed to another meeting. My concerns were heard but not acknowledged. Nothing was resolved except that the Cat was going to need a new school. I left that 2 hour meeting with no hope at all of things ever getting better. I was beaten.
The following day things got brighter. I met with the district rep to discuss the previous meeting and look at moving the Cat to another school. And I WON!! The Cat got a new school. I was elated.
Until reality set in. What makes me think that this school will be any better than the school from hell?? Its still a neighborhood school in the district... All programs in the district are the same right?? The first one did not work. Why would this one?? What makes this one better?
The people!!! THEY GET IT!!
The new school is the best district public school I could possibly hope for!!
THEY GET IT!!!
Everything I wanted for the Cat, they have. The PTB here are amazing. The teacher is understanding. They are going to meet the Cat where she is and help her to advance rather then expecting her to be where everyone else is. They get that this is a SPECTRUM disorder and so everyone is different and you need different techniques and strategies.
There are "safe places" in EVERY room in the building. Small tents with weighted blankets and soft pillows to go calm down. If she melts down I will be notified in daily communication but will not be called unless NOTHING else works. The schedule is set up with plenty of opportunities to move and take breaks from the academics.
They focus on life skills as well. There are times in the day to focus on social skills, fine motor skills, hygiene. They have recess and then come in for lunch and then have specials before going back to academics. They have everything visual. They use first then language. There are social stories for things, a spinner for calming techniques. The room is in centers. The day is broken up between large and small group times and individual work.
THEY GET IT!!!
They are open AND receptive to the AT's coming in to help support. There are clear defined roles for when the AT's will step in and when the teacher will handle things.
I will get daily communication. In a journal sheet from the Cat, and in a notebook from the teacher. So we can all look at the same data and information to look for patterns.They will communicate with me about what they are doing that is working and what is not. All things the school from hell would not do not matter how much I asked.
This place is all I could ever have dreamed of! I love it.
And it's all because I never gave up. I did not stop advocating and knowing that the Cat deserved better than she was getting.
You know your child, better than anyone else. Don't let the school or anyone else tell you different. You know what helps and what hurts. DON"T GIVE UP!! Keep going because it can and will get better. But keep fighting. I am here to listen and offer what suggestions I can if you need a shoulder. Just don't quit!
Thursday, November 21, 2013
Thursday, November 7, 2013
How to not write an FBA
Ok, so by now you all know that I had a meeting at the school on Tuesday that did not go well. It went very bad. In fact it was so bad that I walked out.
The PTB at the school felt that since all they were doing was gathering information they could continue without me... My feelings about that are a whole other post. Since they were continuing the wonderful CM from AK Child and Family stayed to take notes and let me know what happened.
The question most of you probably have is why I felt the need to walk out. What happened that made it get so bad?
The answer... Everything. From the paper they handed me of all the "data" that was collected, to the PTB total lack of respect toward me and the support team I brought with me (I learned a long time ago to never walk into a meeting alone). From the PTB constantly talking over me, to the very evident fact that the PTB were not going to add anything I wanted to the FBA.
I try very hard to work with these people. I do not want backlash for my Cat because of my actions during these meetings. Most of the time I succeed in finding common ground. Some place where we can all agree and go from there. Most of the time I can see the PTB point of view, or at least their side of things. I rarely agree with those, but I can at least find them.
That ability is one of my strengths. I can do that in almost any situation. It is one of the things that allows me to be such a powerful advocate for my Cat. I can come to the meetings calm, and use logic and research to make my points. I can see both sides of the argument. I don't let my emotions take over.
Tuesday, that was impossible. Everything I said was talked over or shot down. At one point the PTB actually told me flat out "I am not going to put in the plan that her AT's have had success de-escalating her. If I do that then you can come back and say that she needs these people in the school with her. I won't allow that."
Let's start at the beginning though. The sheet of "data" that I was handed concerning her meltdowns and the reason for the FBA was not data. I was told that the PTB had "lots of hard data and we will be able to make a plan that will help support the Cat better following her discharge." What they had was a 2 page sheet with anecdotal observations. There was nothing about what time of day the incidents occurred. No information about what was tried to de-escalate, or re-direct the behaviors. Nothing about how long each episode lasted or what behaviors were seen.
What was there was the number of incidents that happened during the 13 days she was in the class. What proceeded each incident. The number of times I was called to come pick her up. And general information about what the PTB considered a meltdown and duration of said meltdowns.
Next we were supposed to try and identify the functions of the behaviors. Well that is a little hard to without actual data so we all started brainstorming. And that is where the big problems came out.
The PTB brought up how the Cat wants to spend her recess interacting with the AT's or TA's as opposed to her peers. First off, YES! HELLO!! She has Asperger's. She struggles to interact with her peers. This is typical. Most of our kids are not very social and feel more comfortable interacting with adults. Also the Cat is in 3rd grade. The other students in her SCC are in 5th grade. So lunch and recess are had with the 4th and 5th graders. Meaning they are wanting my child who struggles socially with peers her own age to interact appropriately with children who are 1-3 years older than she is. Does anyone see the problem here?
I did. I also saw a obvious solution. Change her schedule so that she is having lunch and recess with the 3rd graders again. Apparently this was not a solution that fit with the plan the PTB had. I was told that we could discuss that at a later time. The issue was not when she was having recess but that she needs to interact less with the adults and more with her peers. WHA?????
OK, fine. Still trying to work with these people. I make a note of this and we move on to another topic.
Meds. I do not want to start a debate here. I chose to medicate the Cat and the meds are helping her. The PTB know that she is medicated. They put in the FBA one of the contributing factors to behaviors are med levels. I agree. TO A POINT. I do not want it in any document that the Cat's meds have to be at a certain level. I do want the Cat to think that her meds will solve things for her and that she doesn't have to learn to manage and cope with things without the meds. She will not be on meds for the rest of her life. I view her meds as a tool to help her be able to learn and practice coping skills.
The PTB again disagreed with me. I was told "The meds allow her to learn coping skills in a therapeutic setting. Which we don't have here." I was so angry at that comment. the coping skills need to be practiced and taught everywhere. Not just in therapeutic settings. Do these people even know anything about what they are talking about?
Wait, I still have to work with them. Deep breath. Make a note and move on.
To de-escalation. What works? Well the AT's have had success in calming her outside of school when give the chance to actually interact with the Cat. Let's make a note of that in the FBA. Nope. Sorry not relevant. Its not in a school setting. Here they have never been successful. (BULLSHIT!) Still trying to work with them. The teacher says she has talked the Cat "off the ledge" several times. Sometimes as many as 5 times a day. Great. What worked? What didn't? Oh I don't know. It was never consistent. There was never any consistency in what would set her off and what would calm her down. BULLSHIT!! you just didn't gather actual data for us to work with.
Again the AT's have been successful outside of school. Here are somethings that have worked with them. Can we make a note in the FBA about that? And then... The wonderful line from above. "I am not going to put in the plan that her AT's have had success de-escalating her. If I do that then you can come back and say that she needs these people in the school with her. I won't allow that."
How do you work with that? What should I have done? I explained since it was clear they were not willing to listen to me or work with me to write the FBA I was ending the meeting. We have another meeting on the 12th to discuss placement and programming with a rep from the district. I told them we could continue this discussion at that point and hopefully things would go better then.
The PTB at the school felt that since all they were doing was gathering information they could continue without me... My feelings about that are a whole other post. Since they were continuing the wonderful CM from AK Child and Family stayed to take notes and let me know what happened.
The question most of you probably have is why I felt the need to walk out. What happened that made it get so bad?
The answer... Everything. From the paper they handed me of all the "data" that was collected, to the PTB total lack of respect toward me and the support team I brought with me (I learned a long time ago to never walk into a meeting alone). From the PTB constantly talking over me, to the very evident fact that the PTB were not going to add anything I wanted to the FBA.
I try very hard to work with these people. I do not want backlash for my Cat because of my actions during these meetings. Most of the time I succeed in finding common ground. Some place where we can all agree and go from there. Most of the time I can see the PTB point of view, or at least their side of things. I rarely agree with those, but I can at least find them.
That ability is one of my strengths. I can do that in almost any situation. It is one of the things that allows me to be such a powerful advocate for my Cat. I can come to the meetings calm, and use logic and research to make my points. I can see both sides of the argument. I don't let my emotions take over.
Tuesday, that was impossible. Everything I said was talked over or shot down. At one point the PTB actually told me flat out "I am not going to put in the plan that her AT's have had success de-escalating her. If I do that then you can come back and say that she needs these people in the school with her. I won't allow that."
Let's start at the beginning though. The sheet of "data" that I was handed concerning her meltdowns and the reason for the FBA was not data. I was told that the PTB had "lots of hard data and we will be able to make a plan that will help support the Cat better following her discharge." What they had was a 2 page sheet with anecdotal observations. There was nothing about what time of day the incidents occurred. No information about what was tried to de-escalate, or re-direct the behaviors. Nothing about how long each episode lasted or what behaviors were seen.
What was there was the number of incidents that happened during the 13 days she was in the class. What proceeded each incident. The number of times I was called to come pick her up. And general information about what the PTB considered a meltdown and duration of said meltdowns.
Next we were supposed to try and identify the functions of the behaviors. Well that is a little hard to without actual data so we all started brainstorming. And that is where the big problems came out.
The PTB brought up how the Cat wants to spend her recess interacting with the AT's or TA's as opposed to her peers. First off, YES! HELLO!! She has Asperger's. She struggles to interact with her peers. This is typical. Most of our kids are not very social and feel more comfortable interacting with adults. Also the Cat is in 3rd grade. The other students in her SCC are in 5th grade. So lunch and recess are had with the 4th and 5th graders. Meaning they are wanting my child who struggles socially with peers her own age to interact appropriately with children who are 1-3 years older than she is. Does anyone see the problem here?
I did. I also saw a obvious solution. Change her schedule so that she is having lunch and recess with the 3rd graders again. Apparently this was not a solution that fit with the plan the PTB had. I was told that we could discuss that at a later time. The issue was not when she was having recess but that she needs to interact less with the adults and more with her peers. WHA?????
OK, fine. Still trying to work with these people. I make a note of this and we move on to another topic.
Meds. I do not want to start a debate here. I chose to medicate the Cat and the meds are helping her. The PTB know that she is medicated. They put in the FBA one of the contributing factors to behaviors are med levels. I agree. TO A POINT. I do not want it in any document that the Cat's meds have to be at a certain level. I do want the Cat to think that her meds will solve things for her and that she doesn't have to learn to manage and cope with things without the meds. She will not be on meds for the rest of her life. I view her meds as a tool to help her be able to learn and practice coping skills.
The PTB again disagreed with me. I was told "The meds allow her to learn coping skills in a therapeutic setting. Which we don't have here." I was so angry at that comment. the coping skills need to be practiced and taught everywhere. Not just in therapeutic settings. Do these people even know anything about what they are talking about?
Wait, I still have to work with them. Deep breath. Make a note and move on.
To de-escalation. What works? Well the AT's have had success in calming her outside of school when give the chance to actually interact with the Cat. Let's make a note of that in the FBA. Nope. Sorry not relevant. Its not in a school setting. Here they have never been successful. (BULLSHIT!) Still trying to work with them. The teacher says she has talked the Cat "off the ledge" several times. Sometimes as many as 5 times a day. Great. What worked? What didn't? Oh I don't know. It was never consistent. There was never any consistency in what would set her off and what would calm her down. BULLSHIT!! you just didn't gather actual data for us to work with.
Again the AT's have been successful outside of school. Here are somethings that have worked with them. Can we make a note in the FBA about that? And then... The wonderful line from above. "I am not going to put in the plan that her AT's have had success de-escalating her. If I do that then you can come back and say that she needs these people in the school with her. I won't allow that."
How do you work with that? What should I have done? I explained since it was clear they were not willing to listen to me or work with me to write the FBA I was ending the meeting. We have another meeting on the 12th to discuss placement and programming with a rep from the district. I told them we could continue this discussion at that point and hopefully things would go better then.
Wednesday, October 30, 2013
Unintentional Lessons
So we all know that our children remember everything. Absolutely everything! And they will repeat it back to us or others at the most unfortunate times. Like bathroom stories retold at church. Or stories about our private lives shouted out during parent teacher conferences.
Well a few years ago the Cat was told by a friend about some abuse going on in her home. This friend was removed from the home and placed in another setting with family. The loss still haunts the Cat. And she remembers this event in VIVID detail.
An unintentional lesson was ingrained in the Cat at this moment.
Fast forward to present day. The Cat suffers from severe separation anxiety on top of her others challenges. So being away from me has been hard on her. It's been tough on me too, but we both know why she is there. I know I made the right choice, regardless of how much it hurts.
So the Cat doesn't want to be in the hospital anymore. She wants to come home. She tells me this everyday. Multiple times a day. It is not time for her to come home yet. She needs to get stable and learn some coping skills.
Apparently this does not coincide with the plans the Cat has. She decided she would take matters into her own hands. She was on an elevator with a male staff person. There are cameras everywhere in the hospital, to protect both the patients and the staff. The Cat starts screaming "STOP TOUCHING ME!" Repeatedly. Nothing is calming her. Until the staff points out the camera and explains that the tape sees that no one is touching her.
This is completely new. The Cat has never done this before. EVER. So I a wracking my brain trying to figure out why she would do this. Is this some new symptom of behaviors? Is she having hallucinations? Was there something bugging her sensory wise that she couldn't express? Where did this come from?
Remember that unintentional lesson... YEAH... not good.
The Cat remembered that lesson. She knew that when her friend said someone was touching her she got to go somewhere else. So in the mind of the Cat if she were to say someone was touching her then she would get to leave. She would get to come home. Understandable logic in her mind. Totally inappropriate to us...
So what do I do now? How do I get her to understand that she cannot do this?
Well a few years ago the Cat was told by a friend about some abuse going on in her home. This friend was removed from the home and placed in another setting with family. The loss still haunts the Cat. And she remembers this event in VIVID detail.
An unintentional lesson was ingrained in the Cat at this moment.
Fast forward to present day. The Cat suffers from severe separation anxiety on top of her others challenges. So being away from me has been hard on her. It's been tough on me too, but we both know why she is there. I know I made the right choice, regardless of how much it hurts.
So the Cat doesn't want to be in the hospital anymore. She wants to come home. She tells me this everyday. Multiple times a day. It is not time for her to come home yet. She needs to get stable and learn some coping skills.
Apparently this does not coincide with the plans the Cat has. She decided she would take matters into her own hands. She was on an elevator with a male staff person. There are cameras everywhere in the hospital, to protect both the patients and the staff. The Cat starts screaming "STOP TOUCHING ME!" Repeatedly. Nothing is calming her. Until the staff points out the camera and explains that the tape sees that no one is touching her.
This is completely new. The Cat has never done this before. EVER. So I a wracking my brain trying to figure out why she would do this. Is this some new symptom of behaviors? Is she having hallucinations? Was there something bugging her sensory wise that she couldn't express? Where did this come from?
Remember that unintentional lesson... YEAH... not good.
The Cat remembered that lesson. She knew that when her friend said someone was touching her she got to go somewhere else. So in the mind of the Cat if she were to say someone was touching her then she would get to leave. She would get to come home. Understandable logic in her mind. Totally inappropriate to us...
So what do I do now? How do I get her to understand that she cannot do this?
Tuesday, October 29, 2013
So what now?
After all the talk about what happened last week I am left with a question...
What now?? I know it was a recurring question during the previous blog. What do you do? What happens next? What now?
Well for me the next step was to take time to process everything that happened, then start planning for when the Cat will be released and come home.
Any of you who have been following me for a while know that I have my reservations about the Cat's school. About the sincerity of the PTB in charge. The solution of the PTB when the Cat blows out at school is to have the in-school support leave the room and then call me and discuss suspension. From the mouth of the PTB after Wednesdays incident "Well since she is in the hospital there is no point in suspending her this time." What does that teach the Cat? What does she learn? Not how to cope or manage her triggers and blow outs, instead how to manipulate the system to get out school when things get too hard.
This is becoming a regular pattern. And it pisses me off.
So what now? What is next?
The first step is to notify the PTB that I have concerns. So yesterday I wrote an email to the school and let the PTB know what my problems and concerns are. Then I sent an email to my support team AYFN and AK Child and Family (seriously if you are local and in need of support for you SN kiddo call these people!).
AK Child and Family and AYFN were the first to get back to me and we set up a meeting to discuss what the next step is. I want to discuss their feelings about the school and other possible placement options. I want all of us to get on the same page and I want to discuss what the plan will be for follow up after the Cat is discharged.
Then I called the PTB at the school. After the last email encounter the PTB asked that I call when I have a problem. So I did. I went through everything I had included in the email and asked to schedule a meeting with the PTB and someone from the district to discuss placement options and programming. The PTB was surprisingly receptive (based on past interactions) and included me in an email to the district asking for a rep at the meeting. That meeting has not been scheduled yet as we are still waiting to hear back from the district.
I am waiting to see about scheduling a meeting with her treatment team at the hospital to discuss a treatment plan with them.
My hope is that by the end of next week I will have everyone on the same page. Somewhat. I will still need to have a transition meeting with the staff at whatever new school we decide on. But that will have to happen after we choose a new placement, and we meet to review the IEP and FBA. Also it will have to wait on the hospital. We have to see how things go and when we will have a discharge date.
That's what comes next for us...
What comes next for you??
What now?? I know it was a recurring question during the previous blog. What do you do? What happens next? What now?
Well for me the next step was to take time to process everything that happened, then start planning for when the Cat will be released and come home.
Any of you who have been following me for a while know that I have my reservations about the Cat's school. About the sincerity of the PTB in charge. The solution of the PTB when the Cat blows out at school is to have the in-school support leave the room and then call me and discuss suspension. From the mouth of the PTB after Wednesdays incident "Well since she is in the hospital there is no point in suspending her this time." What does that teach the Cat? What does she learn? Not how to cope or manage her triggers and blow outs, instead how to manipulate the system to get out school when things get too hard.
This is becoming a regular pattern. And it pisses me off.
So what now? What is next?
The first step is to notify the PTB that I have concerns. So yesterday I wrote an email to the school and let the PTB know what my problems and concerns are. Then I sent an email to my support team AYFN and AK Child and Family (seriously if you are local and in need of support for you SN kiddo call these people!).
AK Child and Family and AYFN were the first to get back to me and we set up a meeting to discuss what the next step is. I want to discuss their feelings about the school and other possible placement options. I want all of us to get on the same page and I want to discuss what the plan will be for follow up after the Cat is discharged.
Then I called the PTB at the school. After the last email encounter the PTB asked that I call when I have a problem. So I did. I went through everything I had included in the email and asked to schedule a meeting with the PTB and someone from the district to discuss placement options and programming. The PTB was surprisingly receptive (based on past interactions) and included me in an email to the district asking for a rep at the meeting. That meeting has not been scheduled yet as we are still waiting to hear back from the district.
I am waiting to see about scheduling a meeting with her treatment team at the hospital to discuss a treatment plan with them.
My hope is that by the end of next week I will have everyone on the same page. Somewhat. I will still need to have a transition meeting with the staff at whatever new school we decide on. But that will have to happen after we choose a new placement, and we meet to review the IEP and FBA. Also it will have to wait on the hospital. We have to see how things go and when we will have a discharge date.
That's what comes next for us...
What comes next for you??
Friday, October 25, 2013
Things we aren't supposed to say
There are things that you are not supposed to talk about when you are an autism blogger.
You aren't supposed to talk about how hard some days are. Or the fact that your child will occasionally hit you, or others. Sometimes that aggression gets so bad you just don't know what to do. Sometimes you are left with bloody noses, black eyes, bruises. Sometimes the child has all the bruises.
So when that happens, what do you do?
You aren't supposed to talk about those things. The readers don't want to hear about your struggles. They come to you so that they know things will get better. They read your blog to hear about all the triumphs that they can look forward to. To hear about the fact that even though things are tough after the initial diagnosis, there is an upside. They want light, and humor, a small grain of truth every once in a while. But readers don't want the struggles.
So what do you do? Who do you lean on?
I say to hell with what we are supposed to talk about! I say that sometimes the readers NEED to hear about the struggles, need to know that they are not alone.
What do you do when as a parent you are faced with making some of the most difficult decisions for the sake of keeping yourself or your child safe? Whose safety needs to come first? So I am going to share a story that I am not supposed to talk about... Because this is for me, and I need to talk to someone about it.
Wednesday night I made the hardest decision of my life.
A couple of days ago I posted on my Facebook page about struggles the Cat has been having behavior wise. I asked those following the page to share and also to offer any advice. I got no responses. That happens, move on, not the point. The point is that her behaviors continued to escalate. She was choking herself, throwing punches at teachers and other school staff, hitting herself, hitting me, biting, throwing things at people. It was not pretty and it was not getting better.
Her meltdowns have been getting worse. More violent, longer duration, more frequent. She is not getting the support she needs from the state. That's another blog. She is being denied the support she is supposed to have in-school. The PTB solution to her meltdowns at school? Kick out the in-school 1-on-1 support, call me, and suspend (or threaten to suspend) the Cat.
So what do you do?
I did what most of you would do. I called her doc and tried to get an emergency appointment. Well wait he has suddenly dropped all of his Medicaid patients.
So what do you?
I met with her behavioral health case manager. I spoke with the patient care coordinator at the new docs office. I spoke with her AT providing in-school support. I spoke with my advocate. I spoke with her OT. They all told me the same thing... In-patient treatment would keep her safe, keep others safe. They would be able to monitor her meds, adjust the meds as needed. She will learn coping skills, and she will stabilize. This is what matters. That is what is most important.
So what do you do?
I did the only thing I could do when faced with such a decision. I listened to the team of professionals I have assembled together to help the Cat. Wednesday night I had the Cat admitted for in-patient treatment.
I have felt so empty and so alone ever since. Everything I did revolved around her schedule and her needs. That happens so often to us I know. I reached out to a few of my favorite autism pages on Facebook and found good support and suggestions for how to move on from here.
So the point of all of this?? You are not the only struggling. I know there are tough choices out there that have to be made. I know that autism is not all Carly, Temple, and Sparks. I know it gets ugly. It is rarely sunshine, rainbows and roses in the beginning. BUT YOU ARE NOT ALONE!! I was not alone Wednesday night, or yesterday. And you are not alone either. We all know the dark side is there. We just hide it well with lots of wine and sarcasm that our children don't catch.
You aren't supposed to talk about how hard some days are. Or the fact that your child will occasionally hit you, or others. Sometimes that aggression gets so bad you just don't know what to do. Sometimes you are left with bloody noses, black eyes, bruises. Sometimes the child has all the bruises.
So when that happens, what do you do?
You aren't supposed to talk about those things. The readers don't want to hear about your struggles. They come to you so that they know things will get better. They read your blog to hear about all the triumphs that they can look forward to. To hear about the fact that even though things are tough after the initial diagnosis, there is an upside. They want light, and humor, a small grain of truth every once in a while. But readers don't want the struggles.
So what do you do? Who do you lean on?
I say to hell with what we are supposed to talk about! I say that sometimes the readers NEED to hear about the struggles, need to know that they are not alone.
What do you do when as a parent you are faced with making some of the most difficult decisions for the sake of keeping yourself or your child safe? Whose safety needs to come first? So I am going to share a story that I am not supposed to talk about... Because this is for me, and I need to talk to someone about it.
Wednesday night I made the hardest decision of my life.
A couple of days ago I posted on my Facebook page about struggles the Cat has been having behavior wise. I asked those following the page to share and also to offer any advice. I got no responses. That happens, move on, not the point. The point is that her behaviors continued to escalate. She was choking herself, throwing punches at teachers and other school staff, hitting herself, hitting me, biting, throwing things at people. It was not pretty and it was not getting better.
Her meltdowns have been getting worse. More violent, longer duration, more frequent. She is not getting the support she needs from the state. That's another blog. She is being denied the support she is supposed to have in-school. The PTB solution to her meltdowns at school? Kick out the in-school 1-on-1 support, call me, and suspend (or threaten to suspend) the Cat.
So what do you do?
I did what most of you would do. I called her doc and tried to get an emergency appointment. Well wait he has suddenly dropped all of his Medicaid patients.
So what do you?
I met with her behavioral health case manager. I spoke with the patient care coordinator at the new docs office. I spoke with her AT providing in-school support. I spoke with my advocate. I spoke with her OT. They all told me the same thing... In-patient treatment would keep her safe, keep others safe. They would be able to monitor her meds, adjust the meds as needed. She will learn coping skills, and she will stabilize. This is what matters. That is what is most important.
So what do you do?
I did the only thing I could do when faced with such a decision. I listened to the team of professionals I have assembled together to help the Cat. Wednesday night I had the Cat admitted for in-patient treatment.
I have felt so empty and so alone ever since. Everything I did revolved around her schedule and her needs. That happens so often to us I know. I reached out to a few of my favorite autism pages on Facebook and found good support and suggestions for how to move on from here.
So the point of all of this?? You are not the only struggling. I know there are tough choices out there that have to be made. I know that autism is not all Carly, Temple, and Sparks. I know it gets ugly. It is rarely sunshine, rainbows and roses in the beginning. BUT YOU ARE NOT ALONE!! I was not alone Wednesday night, or yesterday. And you are not alone either. We all know the dark side is there. We just hide it well with lots of wine and sarcasm that our children don't catch.
Saturday, September 7, 2013
The E-Mail that is getting attetion
Hello,
My name
is A. I spoke at the education town hall meeting at Campbell
Elementary, about the issues I am having trying to get my 8 year old daughter
with Asperger’s Syndrome the services that she needs from Fire Lake Elementary
school. I have put together a proactive team of professionals to help Cat learn to cope with Asperger’s; looking down the road to her future and not just
what she needs currently. Without the
school on board and aggressively helping Cat, this becomes more of a
challenge.
Our journey began in 2012; Cat was a second grader at Fire Lake. She had been acting out in class and her behaviors were escalating. Cat was struggling both socially and behaviorally. She would blurt things out during spelling tests, and yell during timed math tests. Cat had trouble sitting still and paying attention during presentations. Her teacher and the principal, Mrs. Henry, recommended sending Cat to the Creating Successful Futures (CSF) program at College Gate Elementary to help her learn to manage her behaviors.
Based on interactions and information from staff at CSF, I received a referral to Doc for an evaluation. Doc did his evaluation and referred us to Fuller for neuropsychological testing, giving us a diagnosis of Asperger’s Syndrome.
In October of 2012, Cat was a third grader at Fire Lake. I spoke with the principal regarding the tests, evaluations and Cat’s diagnosis. The school was provided copies of the test results and evaluations for review. I requested an Individualized Education Plan (IEP) to support Cat both academically and behaviorally based on recommendations from Doc and the behaviors we had seen during the prior school year. The school staff felt that Cat’s challenges since starting medication did not warrant an IEP and implemented a basic 504 plan to address minor behaviors they felt might arise.
Cat was not meeting the necessary academic standings required for third grade which was consistent with what we were seeing at home. The decision was made to hold her back and have her repeat second grade. I was told that her Asperger’s was not affecting her academically; since she was no longer a third grader Cat was meeting academic expectations. It appears to me that the fact she was held back indicates academic difficulties.
Cat's behavior escalated; she began to have major meltdowns in the classroom. Cat was hitting herself, throwing things in the classroom, and hitting other students. The principal stated that if Cat’s behaviors did not improve the school will start suspending her.
I requested another meeting to review Cat’s 504, discuss an IEP, and complete a Functional Behavior Assessment (FBA) to implement a Behavior Intervention Plan (BIP). At the meeting the school staff agreed that Cat’s current 504 was not supporting her enough and to start evaluating Cat for services in the fall, claiming there was not enough time to complete the evaluations before the end of the year. An FBA was done and a BIP implemented to help support Cat for the remainder of the school year.
In August 2013 I again met with the staff from Fire Lake; this time to sign the consent papers for the school to evaluate Cat for services. I also wanted to update the 504 and BIP in place so that Cat would have the support she needs while the school completed their evaluations. I was told “the current 504 is good enough and will support Cat just fine,” completely dismissing the recommendations of Cat’s doctor and therapists. The current school year began and Cat has had 5 major meltdowns in 7 days because she is not being properly supported by her current 504.
A meeting with staff from AK Child and Family (AKCF), the school, Alaska Youth and Family Network and I, was held to discuss beginning in school support for Cat. During this meeting Cat’s behaviors were discussed so that the Activity Therapists from AKCF would know the challenges we are facing.
There has been a disturbing pattern of my coming to the school with requests for necessary services and supports followed by the school delaying supports until left with no alternative. I have a team of professionals put together and we are all working together to aggressively help Cat learn to manage her disability. The school’s response has been limited and ineffectual. Without a change in perspective this pattern will continue and Cat’s behaviors will continue to devolve.
I understand that there are limitations on what the school can do. There are many other students in Fire Lake; there are other students with special needs at Fire Lake. There are over whelming budgetary restrictions limiting what services the school can provide. This is where the true problem lies. With every cut to the district budget children like Cat fall through the cracks; children who are high functioning enough that they are looked at as “problem children” and discarded because of their behaviors; children who are just slightly below academic standards; children whose behaviors are fine once given medications.
The reluctance of the school to properly support Cat affects both Cat’s education and that of the other children in her class. Every time she has a meltdown; when her behaviors escalate to the point where she is screaming, throwing things, hitting other children the class has to be evacuated until Cat can be removed. When this happens the entire class loses valuable instruction time. We need an aggressive plan in place to identify and help Cat manage her triggers so that she and her classmates can get the education they are entitled to and richly deserve.
I have documented all of the correspondence with the school if you would like to review it. If there is any further information that you need please feel free to contact me.
The school is not the only organization I am struggling with to get necessary services. Since Cat’s diagnosis I have also been trying to get a Medicaid waiver for my daughter so that I can get her more intensive therapies like Applied Behavioral Analysis (ABA). In order to be eligible for the Medicaid waiver I need to have Developmental Disability (DD) eligibility for her. I have applied twice and keep getting denied and told that Cat’s issues are a behavioral health issue and not a developmental disability despite the Asperger’s diagnosis. Cat was approved for Supplemental Security Income (SSI) benefits without any hassle; still the Department of Senior and Disability Services (DSDS) are refusing to grant the Medicaid Waiver.
Asperger’s has presented Cat with many difficulties. She cannot bathe herself without step by step direction and help to rinse her hair. She cannot brush her own teeth. These are a result of a lack of executive planning function in her brain and general low muscle tone. Cat cannot tie her shoes, button her blouses, or brush her own hair. All of these are fine motor issues. She is unaware of potential dangers around her and will walk right out into traffic. Still the DSDS say she is not developmentally delayed.
Thank you for any help and advice you might be able to
provide in this matter.
Sincerely,
A
Thursday, September 5, 2013
That could be us
They are going to vilify her.
I would have vilified her.
Last night our community was rocked by the realization that even the strongest among us can fall. Not just fall to the ground, but crumble, to the deepest darkest depths. Last night an autism mother tried to kill herself and her daughter. A mother many of us have followed. I read her blog and felt a connection to her. She was going through the battle I am hoping not to fight.
She has been struggling to get help for her daughter. Issy is only 6 years older than my Cat. Issy had just completed another inpatient treatment program for her violent outbursts. They had a plan. They were making progress, until the school stepped in.
I have never reached that dark place with my Cat. That place where I see no way out. That place where I truly feel death is the best option. But I haven't been fighting as long as Kelli and Issy have. I do not condone what she chose to do. I do not agree with the actions. I do ache for them. I do sympathize. I wonder what it must have taken to reach that place. And I realize that could be us.
How many of us have battled with the schools to get the services we know our children need? How many of us have advocated to get the schools to join the team, be on the same page, follow the plan?
Cat has violent outbursts at school. She throws chairs, hits other students, hurts herself. It is not a pretty picture.She has been suspended (without the school calling it that) for using foul language and being unsafe in her classroom.
I would have vilified her.
Last night our community was rocked by the realization that even the strongest among us can fall. Not just fall to the ground, but crumble, to the deepest darkest depths. Last night an autism mother tried to kill herself and her daughter. A mother many of us have followed. I read her blog and felt a connection to her. She was going through the battle I am hoping not to fight.
She has been struggling to get help for her daughter. Issy is only 6 years older than my Cat. Issy had just completed another inpatient treatment program for her violent outbursts. They had a plan. They were making progress, until the school stepped in.
I have never reached that dark place with my Cat. That place where I see no way out. That place where I truly feel death is the best option. But I haven't been fighting as long as Kelli and Issy have. I do not condone what she chose to do. I do not agree with the actions. I do ache for them. I do sympathize. I wonder what it must have taken to reach that place. And I realize that could be us.
How many of us have battled with the schools to get the services we know our children need? How many of us have advocated to get the schools to join the team, be on the same page, follow the plan?
Cat has violent outbursts at school. She throws chairs, hits other students, hurts herself. It is not a pretty picture.She has been suspended (without the school calling it that) for using foul language and being unsafe in her classroom.
ON THE FIRST DAY!!
School here has been in session for almost 3 weeks now. So about 11 days. Of those days Cat has been violent 7 days. The school has finally come on board and Cat now has in school support 5 days a week for about 4 hours a day. This is a huge step.
This is the first time I have not hit a brick wall trying to get Cat some help. Whether it be ABA therapy (medicaid doesn't cover it here), the DD waiver, an IEP. It seems like every time I turn around I hit that brick wall. Every time I feel like I am getting traction, there's the wall.
But without further help, without a plan Cat could be Issy.
We all need to come together, fight together and fix the system. We need to stand strong and make sure that we have support in place. Even the strongest of us can fall, we need to be there to catch each other.
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