Appropriate Education for Joshua
Donation protected
Here is the super short version: Joshua is not getting the free appropriate public education (FAPE) he is entitled to at our local elementary school. He has been accepted to a new school, Gersh Academy, that is specifically for students with autism. Aside from teaching traditional school subjects, there is therapy integrated into the curriculum. In order to attend here (and not completely bankrupt us), we have no choice but to seek legal counsel in order to require the school district to pay the tuition. Our lawyer is in Indianapolis, so we will be making multiple trips back and forth over the next several months. We also are required to get an independent evaluation for his diagnoses. This will cost about $2,500. Our first trip to Indy is on July 20. Any funds raised will be set aside to cover these ongoing costs.
Here is the long story. Sit down. It's a bumpy ride.
About Joshua
Joshua is 9 years old and will be starting 4th grade in the fall. He lives at home with both parents and a 14 year old brother. Joshua is incredibly smart, creative, very tech savvy , funny, helpful, sweet, and loves to snuggle! He loves video games, Minecraft, Legos, Pokemon, and Nerf. It is virtually impossible to keep him inside, no matter the weather!
He is also diagnosed with autism, severe ADHD , disruptive mood dysregulation disorder , and a couple of chromosomal anomalies (Xq28 deletion of the TMLHE gene and MTHFR mutation C677T) that make his other diagnoses more treatment resistant. Click on the links to get more information on each of those. He thrives on structure, has a very difficult time adapting to change, and does not do well with transitioning from one thing to another. He is very impulsive, often speaking or acting before his brain is able to process the consequences. Joshua, like many people with autism, also has a very difficult time identifying and expressing his emotions. Joshua also has sensory issues. If there are too many people or too much noise, he has a very hard time focusing. He would often exhibit behaviors in an effort to be removed from the situation. You can imagine how difficult school assemblies were for him. He usually ended up in the office, of course, even though the school was very aware of this issue. He is in constant motion from the moment he wakes up until he finally crashes at bedtime.
He was initially diagnosed with ADHD when he was 3 years old. Over the next 2 years, we began working with a developmental pediatrician and had genetic testing done. It was also that doctor that referred us to the doctor who gave us the autism diagnosis. We are still with the same specialist.
3rd grade, 2017-2018
(Let me preface the following information with this: we do not deny Joshua's behavior. We are fully aware of what he is capable of, both positive and negative. And, yes, we do have some of these same behaviors at home. The difference is that we utilize the same strategies we recommended to the school to help deescalate Joshua when he is upset and acting out. They work. It takes time, but they work.)
This past school year was incredibly difficult. Despite the school putting their own behavior plan in place and us giving them pages of both proactive and reactive strategies, Joshua was suspended 8 times and almost expelled. If he wasn't suspended, he was most likely in the office. Why? Because at the first hint of trouble, he was sent to the cool-off room in the office.
Several times, Joshua told school staff that other students were picking on him or yelling at him. He was told to ignore it or not worry about it. When those students would continue to upset him, he would retaliate. Joshua, then, would get in trouble and be sent to the office. That often resulted in physical aggression or him eloping from the school. One time, he ran home after he climbed out a window that the school just assumed didn't even open!
Another time, Joshua felt as though other students were yelling at him in the lunch room. He notified a teacher but nothing was done. When these students continued to yell (even if it wasn't really at him, that's what he perceived was happening), Joshua retaliated. He was again sent to the office, sent home, and suspended. After this incident, Joshua was required to eat lunch in the office, away from other students. The ironic thing is that Joshua actually preferred this. He told us many times that eating in the office was so much better, because he was away from all of the noise and could focus on eating.
These are just a couple of examples of why Joshua was suspended from this past school year. After just a couple of incidents, Joshua knew exactly what to do if he wanted to go home. There was at least one time that Joshua told school staff that he was going to get suspended that day because he wanted to go home. Sure enough, he would be suspended within an hour or two.
Evaluation, Denial, and Appeal
Twice, we had the school evaluate Joshua for an IEP; once in kindergarten and once during this school year. Twice, he was denied. Twice, Joshua's medical diagnoses were ignored. Why? Because when he's in class, he does just fine. From an educational perspective, they claim, he is not autistic. We questioned that determination because he spent so much time in the office. He may do fine in class, but he was rarely in the classroom! Not to mention, he had almost all failing grades. How does a child go from having straight A's in 2nd grade to failing the very next year? The difference was in the reactions of his teacher and other staff. His 2nd grade teacher understood how to reach him. She knew how to engage him, how to motivate and encourage him. We suggested and gave permission for the school to contact her for ideas on working with Joshua. Even though the director of special education for the school district stated they would absolutely do so, they neglected to use this resource and many others.
After the second IEP denial, we appealed the decision to the director of special needs education for the school district. After reviewing Joshua's file, she agreed that more needed to be done. A new behavior plan was written and agreed upon in January 2018. By this time, Joshua had been suspended 5 or 6 times already. Did I mention that the earlier behavior plan states that suspension was not effective because Joshua wanted to be at home? That was his main goal. Home. Oh, and also included taking his recess away as a consequence. Why would anybody take recess away from a child ADHD?!
It was also at that meeting with the director that a 504 plan was mentioned. Why was this never offered at any other time? A 504 plan is similar to an IEP but deals more with accommodations, such as testing in a separate room rather than in class. The 504 states that his ADHD diagnosis is the reason for it. Again, no mention of any other of Joshua's more significant medical diagnoses.
(Let me add that allowing him to test separately was, we believe, instrumental in Joshua getting a perfect score on the standardized IRead test in spring.)
Positive Results!
When Joshua returned to school after Christmas break, several changes were implemented for him. He now had a late arrival time so he avoided the noise and chaos of all the other students arriving. He also entered through a different door. This change made us recognize that just entering the school near the office seemed to be some type of trigger for him.
Two days a week, he was given the opportunity to do a physical job for a bit before going to class. Some days he would wipe down the cafeteria tables. Other days, he helped update laptops, make photocopies, etc. Two days, he spent the first couple hours in a fifth grade classroom doing more difficult work. He really enjoyed this time with the older students! The other day, he would arrive late due to having weekly therapy in the morning. On that day, he entered the school through the main door, by the office. We were not surprised that these were his worst days. Again, we had already realized that, upon arrival, the office itself seemed to be a trigger. Even though we asked, the school was not willing to let him enter the side door on those days.
We also added a monetary incentive for Joshua. He could earn $1 each day for good behavior. It was broken down into 4 separate opportunities. He earned a quarter for going to class within 15 minutes of arrival, for transitioning to and from lunch and recess without issue, for transitioning to and from special classes (like music and art), and for having a good end of the day. Joshua loves money so this incentive was a great encouragement for him!
Too Good to Be True
These changes helped so much! Well, for about 2 months, anyway. Then, the school began to stop doing their part. Dad (Steve) would take Joshua to school and have to wait 10 or 15 minutes for someone to meet them at the door to let Joshua in. This upset Joshua's routine and made the transition to school very rough. We also stopped getting the documentation regarding how much money he earned each day. So now, Joshua was not earning the incentive that had been working so well. We could not give it to him if we were not sure how much he had earned.
One Friday in February, Joshua's dad had emergency surgery. I (mom) took the day off work and was also home all weekend with him. On Monday, I notified the school that Joshua would likely have increased anxiety due to Steve being home alone for the first time since surgery. Sure enough, Joshua became very agitated at school and was sent to the office, naturally. He ended up eloping and ran home to check on his dad. He was consequently suspended. Rather than take the time to talk to him about his feelings and why he was upset, Joshua was immediately punished. A simple call home to check in on dad would likely have taken care of the problem.
The school told us that Joshua can always ask to make a phone call. Again, Joshua has a very hard time recognizing and expressing his emotions. When he is upset, you cannot assume he is able to tell you what is wrong or what he needs to soothe him. He requires prompting.
There were 1 or 2 more suspensions after that, too.
The Last Straw
On May 3rd, Joshua complained to a teacher on recess that he was being picked on by older kids. Nothing whatsoever was done. When recess was over, Joshua refused to go inside. He ended up scaling the fence around the playground and trying to run home. When the school resource officer caught up with him, the officer said, "I am not chasing you. If you want to go home, get in my car and I'll take you." That right there. In Joshua's mind, he was just given permission to go home. While this was happening, the school called me at work. I was told Joshua was just being sent home for the remainder of the day. I called and told Steve.
When the officer and Joshua arrived at our house, Steve was told that Joshua was, in fact, suspended. Moreover, he was being referred for expulsion. Honestly, we knew this was a very real possibility. We had told the school, in no uncertain terms, that this was never to be mentioned around Joshua. Yet, here is the officer saying it with Joshua right there.
Steve and Joshua went to the school a couple hours later to pick up his backpack and were told, again, by a teacher who had never been involved in any of the events, that Joshua was being put up for expulsion. I contacted the school and was told that Joshua was on a 10 day suspension pending expulsion.
The Hearings
On May 15, we had Joshua's manifest determination meeting. This meeting was required since he had a 504 plan. The purpose was to determine if the behaviors that caused the last suspension were a manifestation of his documented diagnosis. Well, the 504 plan strictly covers ADHD. Despite our best efforts to convince the administrators that the behaviors were a manifestation of his diagnoses, we were told that the hearing could only look at it in light of the ADHD. No other information could be considered. So, it was decided that his behaviors were not a result of his ADHD; they were going to move ahead with the expulsion hearing. Even I agree that those behaviors weren't because of his ADHD. But they were manifestations of his other disabilities; none of which could be considered.
The expulsion hearing was on May 17. This is where we could present all of the other information. We could finally argue that Joshua's behavior had a root cause in his multiple diagnoses. By this time, I just wanted it all to be over. Steve and I had already decided Joshua would not be attending that school in fall, regardless of the outcome. To send him back would virtually guarantee a year at least as bad as this one had been.
So, we asked for either half days or for Joshua to be able to finish the school year at home. We put it all out there. All of the information about all of his diagnoses, all of our concerns with how the school reacted to Joshua's behaviors, everything we have been doing over the past several years to help Joshua, how we felt the school system didn't care a bit about what medical professionals said about Joshua. We rehashed much of the school year and how we were treated by staff. How it always seemed we were blamed and accused of not doing anything, that they believed it when Joshua would say that he could do whatever he wanted when he was home on suspension even though we would send in stacks of the worksheets we required him to do. Everything.
We also laid out all of the things we have been doing to help Joshua over the past several years. He was on multiple medications to help him manage his behaviors, impulsiveness, and anxiety, and specific supplements to assist with his body's inability to synthesize certain proteins, enzymes, and hormones due to the chromosomal anomalies . He received weekly traditional therapy and twice weekly skills/behavior therapy.
We applied for and were granted waiver services through the Indiana Bureau of Developmental Disabilities Services. For that, though, we were in a holding pattern. His Medicaid status needed to be changed first. Once that all went through, Joshua would have access to intensive behavioral services, music therapy, recreation therapy, and many other things otherwise unavailable to us. That process alone took over a year. But meant that even the state of Indiana agreed that Joshua has a disability. Yet, the school district did not.
The Decision
On May 18, we were notified that Joshua was not going to be expelled. Rather, he would complete the year at home. We would be given homework by his teacher that needed to be turned in by the end of the school year. That would begin on Monday, May 21. There were 9 days left of the school year.
We picked up the work and made sure Joshua completed it. He did it all in the first week. We were given nothing else for him. He made it through the end of the year with no expulsion on his record.
Gersh Academy
While Joshua was on suspension and home bound, we were told about, applied for, had an assessment at, and were accepted to Gersh Academy. This is a new school opening in South Bend in the fall of 2018 for students with autism.
After talking with the administrators there, it was highly suggested that we seek legal help. Why? Denial of FAPE: Free Appropriate Public Education. Gersh recommended we contact a lawyer they have worked with in the past. We did. The lawyer will help us work to get the school district to agree to pay for Joshua to attend Gersh. Without that, there is no way we could afford for him to attend.
Going Forward from Here
So here we are. We know what our son needs. We have the ability to make it happen but not the means. $2500 to get Joshua an independent evaluation that will be used to prove to the school system that Joshua has a disability (well, several); a disability that has already been recognized by the state.
If this were your child, you would fight, too.
Anything you can do to help in this fight would be so appreciated. Money, prayers, thoughts, support.
It is our hope that this long process will help not only our son, but any other children that may be in the same situation. No school should be able to treat a student the way Joshua was treated. No school should be able to ignore a medical diagnosis because they just don't agree with it.
He is our son. We are his voice.
Thank you,
The Gresso Family
Here is the long story. Sit down. It's a bumpy ride.
About Joshua
Joshua is 9 years old and will be starting 4th grade in the fall. He lives at home with both parents and a 14 year old brother. Joshua is incredibly smart, creative, very tech savvy , funny, helpful, sweet, and loves to snuggle! He loves video games, Minecraft, Legos, Pokemon, and Nerf. It is virtually impossible to keep him inside, no matter the weather!
He is also diagnosed with autism, severe ADHD , disruptive mood dysregulation disorder , and a couple of chromosomal anomalies (Xq28 deletion of the TMLHE gene and MTHFR mutation C677T) that make his other diagnoses more treatment resistant. Click on the links to get more information on each of those. He thrives on structure, has a very difficult time adapting to change, and does not do well with transitioning from one thing to another. He is very impulsive, often speaking or acting before his brain is able to process the consequences. Joshua, like many people with autism, also has a very difficult time identifying and expressing his emotions. Joshua also has sensory issues. If there are too many people or too much noise, he has a very hard time focusing. He would often exhibit behaviors in an effort to be removed from the situation. You can imagine how difficult school assemblies were for him. He usually ended up in the office, of course, even though the school was very aware of this issue. He is in constant motion from the moment he wakes up until he finally crashes at bedtime.
He was initially diagnosed with ADHD when he was 3 years old. Over the next 2 years, we began working with a developmental pediatrician and had genetic testing done. It was also that doctor that referred us to the doctor who gave us the autism diagnosis. We are still with the same specialist.
3rd grade, 2017-2018
(Let me preface the following information with this: we do not deny Joshua's behavior. We are fully aware of what he is capable of, both positive and negative. And, yes, we do have some of these same behaviors at home. The difference is that we utilize the same strategies we recommended to the school to help deescalate Joshua when he is upset and acting out. They work. It takes time, but they work.)
This past school year was incredibly difficult. Despite the school putting their own behavior plan in place and us giving them pages of both proactive and reactive strategies, Joshua was suspended 8 times and almost expelled. If he wasn't suspended, he was most likely in the office. Why? Because at the first hint of trouble, he was sent to the cool-off room in the office.
Several times, Joshua told school staff that other students were picking on him or yelling at him. He was told to ignore it or not worry about it. When those students would continue to upset him, he would retaliate. Joshua, then, would get in trouble and be sent to the office. That often resulted in physical aggression or him eloping from the school. One time, he ran home after he climbed out a window that the school just assumed didn't even open!
Another time, Joshua felt as though other students were yelling at him in the lunch room. He notified a teacher but nothing was done. When these students continued to yell (even if it wasn't really at him, that's what he perceived was happening), Joshua retaliated. He was again sent to the office, sent home, and suspended. After this incident, Joshua was required to eat lunch in the office, away from other students. The ironic thing is that Joshua actually preferred this. He told us many times that eating in the office was so much better, because he was away from all of the noise and could focus on eating.
These are just a couple of examples of why Joshua was suspended from this past school year. After just a couple of incidents, Joshua knew exactly what to do if he wanted to go home. There was at least one time that Joshua told school staff that he was going to get suspended that day because he wanted to go home. Sure enough, he would be suspended within an hour or two.
Evaluation, Denial, and Appeal
Twice, we had the school evaluate Joshua for an IEP; once in kindergarten and once during this school year. Twice, he was denied. Twice, Joshua's medical diagnoses were ignored. Why? Because when he's in class, he does just fine. From an educational perspective, they claim, he is not autistic. We questioned that determination because he spent so much time in the office. He may do fine in class, but he was rarely in the classroom! Not to mention, he had almost all failing grades. How does a child go from having straight A's in 2nd grade to failing the very next year? The difference was in the reactions of his teacher and other staff. His 2nd grade teacher understood how to reach him. She knew how to engage him, how to motivate and encourage him. We suggested and gave permission for the school to contact her for ideas on working with Joshua. Even though the director of special education for the school district stated they would absolutely do so, they neglected to use this resource and many others.
After the second IEP denial, we appealed the decision to the director of special needs education for the school district. After reviewing Joshua's file, she agreed that more needed to be done. A new behavior plan was written and agreed upon in January 2018. By this time, Joshua had been suspended 5 or 6 times already. Did I mention that the earlier behavior plan states that suspension was not effective because Joshua wanted to be at home? That was his main goal. Home. Oh, and also included taking his recess away as a consequence. Why would anybody take recess away from a child ADHD?!
It was also at that meeting with the director that a 504 plan was mentioned. Why was this never offered at any other time? A 504 plan is similar to an IEP but deals more with accommodations, such as testing in a separate room rather than in class. The 504 states that his ADHD diagnosis is the reason for it. Again, no mention of any other of Joshua's more significant medical diagnoses.
(Let me add that allowing him to test separately was, we believe, instrumental in Joshua getting a perfect score on the standardized IRead test in spring.)
Positive Results!
When Joshua returned to school after Christmas break, several changes were implemented for him. He now had a late arrival time so he avoided the noise and chaos of all the other students arriving. He also entered through a different door. This change made us recognize that just entering the school near the office seemed to be some type of trigger for him.
Two days a week, he was given the opportunity to do a physical job for a bit before going to class. Some days he would wipe down the cafeteria tables. Other days, he helped update laptops, make photocopies, etc. Two days, he spent the first couple hours in a fifth grade classroom doing more difficult work. He really enjoyed this time with the older students! The other day, he would arrive late due to having weekly therapy in the morning. On that day, he entered the school through the main door, by the office. We were not surprised that these were his worst days. Again, we had already realized that, upon arrival, the office itself seemed to be a trigger. Even though we asked, the school was not willing to let him enter the side door on those days.
We also added a monetary incentive for Joshua. He could earn $1 each day for good behavior. It was broken down into 4 separate opportunities. He earned a quarter for going to class within 15 minutes of arrival, for transitioning to and from lunch and recess without issue, for transitioning to and from special classes (like music and art), and for having a good end of the day. Joshua loves money so this incentive was a great encouragement for him!
Too Good to Be True
These changes helped so much! Well, for about 2 months, anyway. Then, the school began to stop doing their part. Dad (Steve) would take Joshua to school and have to wait 10 or 15 minutes for someone to meet them at the door to let Joshua in. This upset Joshua's routine and made the transition to school very rough. We also stopped getting the documentation regarding how much money he earned each day. So now, Joshua was not earning the incentive that had been working so well. We could not give it to him if we were not sure how much he had earned.
One Friday in February, Joshua's dad had emergency surgery. I (mom) took the day off work and was also home all weekend with him. On Monday, I notified the school that Joshua would likely have increased anxiety due to Steve being home alone for the first time since surgery. Sure enough, Joshua became very agitated at school and was sent to the office, naturally. He ended up eloping and ran home to check on his dad. He was consequently suspended. Rather than take the time to talk to him about his feelings and why he was upset, Joshua was immediately punished. A simple call home to check in on dad would likely have taken care of the problem.
The school told us that Joshua can always ask to make a phone call. Again, Joshua has a very hard time recognizing and expressing his emotions. When he is upset, you cannot assume he is able to tell you what is wrong or what he needs to soothe him. He requires prompting.
There were 1 or 2 more suspensions after that, too.
The Last Straw
On May 3rd, Joshua complained to a teacher on recess that he was being picked on by older kids. Nothing whatsoever was done. When recess was over, Joshua refused to go inside. He ended up scaling the fence around the playground and trying to run home. When the school resource officer caught up with him, the officer said, "I am not chasing you. If you want to go home, get in my car and I'll take you." That right there. In Joshua's mind, he was just given permission to go home. While this was happening, the school called me at work. I was told Joshua was just being sent home for the remainder of the day. I called and told Steve.
When the officer and Joshua arrived at our house, Steve was told that Joshua was, in fact, suspended. Moreover, he was being referred for expulsion. Honestly, we knew this was a very real possibility. We had told the school, in no uncertain terms, that this was never to be mentioned around Joshua. Yet, here is the officer saying it with Joshua right there.
Steve and Joshua went to the school a couple hours later to pick up his backpack and were told, again, by a teacher who had never been involved in any of the events, that Joshua was being put up for expulsion. I contacted the school and was told that Joshua was on a 10 day suspension pending expulsion.
The Hearings
On May 15, we had Joshua's manifest determination meeting. This meeting was required since he had a 504 plan. The purpose was to determine if the behaviors that caused the last suspension were a manifestation of his documented diagnosis. Well, the 504 plan strictly covers ADHD. Despite our best efforts to convince the administrators that the behaviors were a manifestation of his diagnoses, we were told that the hearing could only look at it in light of the ADHD. No other information could be considered. So, it was decided that his behaviors were not a result of his ADHD; they were going to move ahead with the expulsion hearing. Even I agree that those behaviors weren't because of his ADHD. But they were manifestations of his other disabilities; none of which could be considered.
The expulsion hearing was on May 17. This is where we could present all of the other information. We could finally argue that Joshua's behavior had a root cause in his multiple diagnoses. By this time, I just wanted it all to be over. Steve and I had already decided Joshua would not be attending that school in fall, regardless of the outcome. To send him back would virtually guarantee a year at least as bad as this one had been.
So, we asked for either half days or for Joshua to be able to finish the school year at home. We put it all out there. All of the information about all of his diagnoses, all of our concerns with how the school reacted to Joshua's behaviors, everything we have been doing over the past several years to help Joshua, how we felt the school system didn't care a bit about what medical professionals said about Joshua. We rehashed much of the school year and how we were treated by staff. How it always seemed we were blamed and accused of not doing anything, that they believed it when Joshua would say that he could do whatever he wanted when he was home on suspension even though we would send in stacks of the worksheets we required him to do. Everything.
We also laid out all of the things we have been doing to help Joshua over the past several years. He was on multiple medications to help him manage his behaviors, impulsiveness, and anxiety, and specific supplements to assist with his body's inability to synthesize certain proteins, enzymes, and hormones due to the chromosomal anomalies . He received weekly traditional therapy and twice weekly skills/behavior therapy.
We applied for and were granted waiver services through the Indiana Bureau of Developmental Disabilities Services. For that, though, we were in a holding pattern. His Medicaid status needed to be changed first. Once that all went through, Joshua would have access to intensive behavioral services, music therapy, recreation therapy, and many other things otherwise unavailable to us. That process alone took over a year. But meant that even the state of Indiana agreed that Joshua has a disability. Yet, the school district did not.
The Decision
On May 18, we were notified that Joshua was not going to be expelled. Rather, he would complete the year at home. We would be given homework by his teacher that needed to be turned in by the end of the school year. That would begin on Monday, May 21. There were 9 days left of the school year.
We picked up the work and made sure Joshua completed it. He did it all in the first week. We were given nothing else for him. He made it through the end of the year with no expulsion on his record.
Gersh Academy
While Joshua was on suspension and home bound, we were told about, applied for, had an assessment at, and were accepted to Gersh Academy. This is a new school opening in South Bend in the fall of 2018 for students with autism.
After talking with the administrators there, it was highly suggested that we seek legal help. Why? Denial of FAPE: Free Appropriate Public Education. Gersh recommended we contact a lawyer they have worked with in the past. We did. The lawyer will help us work to get the school district to agree to pay for Joshua to attend Gersh. Without that, there is no way we could afford for him to attend.
Going Forward from Here
So here we are. We know what our son needs. We have the ability to make it happen but not the means. $2500 to get Joshua an independent evaluation that will be used to prove to the school system that Joshua has a disability (well, several); a disability that has already been recognized by the state.
If this were your child, you would fight, too.
Anything you can do to help in this fight would be so appreciated. Money, prayers, thoughts, support.
It is our hope that this long process will help not only our son, but any other children that may be in the same situation. No school should be able to treat a student the way Joshua was treated. No school should be able to ignore a medical diagnosis because they just don't agree with it.
He is our son. We are his voice.
Thank you,
The Gresso Family
Organizer
Marie Gresso
Organizer
Mishawaka, IN
