In Illinois, every three years children are up for IEP review. At my son’s last meeting, I was asked by the school if I would be updating his medical diagnosis. I said that I would and would appreciate any feedback they would have since we last saw a neurophysiologist four years ago. The school gave me paperwork that said they had concerns about speech and attention.
I took my son to the neurophysiologist where he spent all day testing. The doctor then interviewed me, my husband, and collected the school’s report. She said that she would take the testing, reports, and medical history into consideration when making a diagnosis. The diagnosis was Aspergers/ High Functioning Autism, Written Expressive Disorder, Anxiety, Speech Delay, Developmental Coordination Disorder and Sensory Processing.
Upon receiving the diagnosis, I thought the next part would be easy. I would just take it to the school and find the best plan for my son. It was not so. The school disagreed with the diagnosis and told me he didn’t have Autism. They then said ask to conduct their own testing.
Now, I am confused. I have no idea what is going to happen when their results come in. Can an Educational Psyciatrist change the diagnosis? I will let you know what happens! Believe me, I am standing my ground.
Tuesday, March 6, 2018
Friday, January 26, 2018
Written Expression Disorder
My son was recently diagnosed with a written expression disorder. This is a disability where a child's writing is below normal expectations. Signs of a written expressive disorder include:
- problems with spelling
- difficulty in sentence formation
- print that is large and/or difficult to read
- awkward pencil grip
- avoidance or refusal to complete writing task
- trouble with conventions
- lack of writing endurance
- writing is painful
Due to the difficulties with writing, I asked for some modifications and support. The school gave my son extended time and access to a computer for writing assignments, but said he wasn't low enough to receive occupational therapy services for writing. They also stressed that handwriting is not an important skill these days with the use of technology. They assured me that this skill (even though graded on in school) was not necessary with the access people now have to technology. With technology, it will spell check and even write for you as you speak into a microphone. I was blown away by this response. I realize my child will have access to technology, but is it that bad that I want my child to learn how to write with a pencil and paper?
- problems with spelling
- difficulty in sentence formation
- print that is large and/or difficult to read
- awkward pencil grip
- avoidance or refusal to complete writing task
- trouble with conventions
- lack of writing endurance
- writing is painful
Due to the difficulties with writing, I asked for some modifications and support. The school gave my son extended time and access to a computer for writing assignments, but said he wasn't low enough to receive occupational therapy services for writing. They also stressed that handwriting is not an important skill these days with the use of technology. They assured me that this skill (even though graded on in school) was not necessary with the access people now have to technology. With technology, it will spell check and even write for you as you speak into a microphone. I was blown away by this response. I realize my child will have access to technology, but is it that bad that I want my child to learn how to write with a pencil and paper?
Wednesday, January 3, 2018
What is the Worse Thing She Can Tell Me?
Before I went to the results meeting with the neuropsychologist, I was on the phone with my mom. She wanted to prepare me incase I was going to be upset after this meeting. I stopped her from going down that conversation road and told her, "Mom, the doctor will not tell me anything new. This is not our first rodeo. This is the second time we have done this and in-between these diagnosis test, we have had screenings and evaluations for the past 7 years. I mean what is the worse thing she can tell me?"
My mom then went on to say," You know that the specialists and therapists have told you that he could have Autism. Its kind of 50/50 with him. There is evidence both ways."
I told her," I am aware of that. But, for six years he has been tested every year, and they always say his social skills are too high for Autism. Plus, we did not go to this doctor about Autism, we went to see if he has a visual processing disorder that is keeping him from being more successful in Writing and Reading."
My mom said, "Okay, I just want you to be ready incase today is the day." I told her that I would be fine, and we hung up.
The meeting lasted an hour. The doctor went over all of his scores which were very similar to last time. His IQ scores were above average, his math scores were above average, his reading scores were low average, and his writing scores were below average.
Then, we discussed the past diagnosis: anxiety, sensory processing disorder, speech delay, and developmental coordination disorder. She went on to tell me that sensory processing disorder doesn't stand alone. It is usually paired with Autism or ADD/ADHD. She told me that she didn't think he had a visual processing disorder. She said, "He has a written expression disorder, ADHD that may be due to his sensory processing, and Asperger's. He is just like a little professor full of knowledge. I know he is going to do amazing things. We just need to give him a little more support to get there."
After that, she talked to me about speech, occupational therapy, social skills groups, and parent support groups, all in which we have done in the past. I told her that he would soon be starting Horseback Riding Therapy again, and she was excited to hear that. We then scheduled to meet again in a year for an update unless anything else came up, and I left.
The first thing I was asked about hearing this news, "Are you upset?"
The answer is NO. A diagnosis doesn't change who my child is, he is still the sweetest and smartest little boy who craves knowledge. He is still the little boy I fell in love with the fist time I held him and looked at him. The only thing that has changed is a label. But even with that label, I know, just like the doctor said that this little boy will do amazing things!
My mom then went on to say," You know that the specialists and therapists have told you that he could have Autism. Its kind of 50/50 with him. There is evidence both ways."
I told her," I am aware of that. But, for six years he has been tested every year, and they always say his social skills are too high for Autism. Plus, we did not go to this doctor about Autism, we went to see if he has a visual processing disorder that is keeping him from being more successful in Writing and Reading."
My mom said, "Okay, I just want you to be ready incase today is the day." I told her that I would be fine, and we hung up.
The meeting lasted an hour. The doctor went over all of his scores which were very similar to last time. His IQ scores were above average, his math scores were above average, his reading scores were low average, and his writing scores were below average.
Then, we discussed the past diagnosis: anxiety, sensory processing disorder, speech delay, and developmental coordination disorder. She went on to tell me that sensory processing disorder doesn't stand alone. It is usually paired with Autism or ADD/ADHD. She told me that she didn't think he had a visual processing disorder. She said, "He has a written expression disorder, ADHD that may be due to his sensory processing, and Asperger's. He is just like a little professor full of knowledge. I know he is going to do amazing things. We just need to give him a little more support to get there."
After that, she talked to me about speech, occupational therapy, social skills groups, and parent support groups, all in which we have done in the past. I told her that he would soon be starting Horseback Riding Therapy again, and she was excited to hear that. We then scheduled to meet again in a year for an update unless anything else came up, and I left.
The first thing I was asked about hearing this news, "Are you upset?"
The answer is NO. A diagnosis doesn't change who my child is, he is still the sweetest and smartest little boy who craves knowledge. He is still the little boy I fell in love with the fist time I held him and looked at him. The only thing that has changed is a label. But even with that label, I know, just like the doctor said that this little boy will do amazing things!
More Troubes With the School
Getting a diagnosis is a lengthy and expensive process. For my child, it was ten tests in a six hour period.
After my son spent six hours testing with the neuropsychologist, and I spent two hours filling out forms, getting old documents copied, and being interviewed by the doctor, the doctor had one request. She needed a teacher from the school to fill out a twenty minute survey to see if my child has ADHD. She needed the forms mailed quickly since our follow-up meeting would be in 10 days.
So I went straight from the doctor's office to the school to give the teacher and extra half day to fill it out. I told my son to give the form with the note to the teacher. The note told her that the paperwork was time sensitive and needed to be mailed in 2 1/2 days. When the teacher saw the note, she told my son she couldn't do it in that time frame and she was sorry. When he came back to my car with the paper, I was furious. Here I am spending $3,000 on this diagnosis and have already gave 8 hours of our time and she couldn't fill out a 20 minute survey!?
I parked my car and went into the office. I told them how important it was that someone in the building: the physical education teacher, music teacher, art teacher, speech teacher, or homeroom teacher fill this out. I told them that I am trying to get this done before his IEP review and I really need the school's input. The office took the paper and promised it would happen.
Two days later, I received an email that the principal taught my child's math class so his teacher could fill out the survey. I am very thankful for the principal taking action and making this happen. I am disappointed in the teacher and that it had to come to this. This just goes to show you that you are your child's greatest advocate. if you stand your ground long enough, things will happen!
After my son spent six hours testing with the neuropsychologist, and I spent two hours filling out forms, getting old documents copied, and being interviewed by the doctor, the doctor had one request. She needed a teacher from the school to fill out a twenty minute survey to see if my child has ADHD. She needed the forms mailed quickly since our follow-up meeting would be in 10 days.
So I went straight from the doctor's office to the school to give the teacher and extra half day to fill it out. I told my son to give the form with the note to the teacher. The note told her that the paperwork was time sensitive and needed to be mailed in 2 1/2 days. When the teacher saw the note, she told my son she couldn't do it in that time frame and she was sorry. When he came back to my car with the paper, I was furious. Here I am spending $3,000 on this diagnosis and have already gave 8 hours of our time and she couldn't fill out a 20 minute survey!?
I parked my car and went into the office. I told them how important it was that someone in the building: the physical education teacher, music teacher, art teacher, speech teacher, or homeroom teacher fill this out. I told them that I am trying to get this done before his IEP review and I really need the school's input. The office took the paper and promised it would happen.
Two days later, I received an email that the principal taught my child's math class so his teacher could fill out the survey. I am very thankful for the principal taking action and making this happen. I am disappointed in the teacher and that it had to come to this. This just goes to show you that you are your child's greatest advocate. if you stand your ground long enough, things will happen!
Saturday, December 30, 2017
Struggles with the School
I wish I could tell you that this journey will be easy and that as long as you have all your paperwork together, your child will get the support he or she needs. But it’s not that simple. You are your child’s best advocate, and you have to fight for them and their rights.
Starting in kindergarten, I was told that my child was functioning just where he needs to be or a little bit below, so he could not get any services other than speech. You see, your child has to be function way below standards to get support. So, kids that are treading and barely staying above water get overlooked. They are the kids that fall into the cracks of this system.
The following year, it finally happened- my child scored low enough. The last day of school came, and with no warning, I received the report card saying my child was below grade level standards. I knew this day would come. I had been telling the school for two years about the trouble he was having. It is just frustrating that it came without a warning from the teacher.
So when we started second grade, we had an IEP meeting to make changes to the current IEP that was for speech only, and add a little more support. At the meeting, I discussed my concerns for further testing and the school asked if I was going to get an updated diagnosis from the doctor since the last one was from when he entered Kindergarten (three years ago). They said that if I was going to do that, then all the testing would be done by the doctor. So once again, the school wants to wash their hands clean of this and have me take care of it. Hopefully, once all is done, the school will be more supportive.
It is so frustrating at times to know what your child needs and not have the school on the same page. The only thing I can continue to do is help my kiddo the best I can and continue to be in his corner at school. I wish this journey was easier, but even on the hardest days, every second is worth it.
Starting in kindergarten, I was told that my child was functioning just where he needs to be or a little bit below, so he could not get any services other than speech. You see, your child has to be function way below standards to get support. So, kids that are treading and barely staying above water get overlooked. They are the kids that fall into the cracks of this system.
The following year, it finally happened- my child scored low enough. The last day of school came, and with no warning, I received the report card saying my child was below grade level standards. I knew this day would come. I had been telling the school for two years about the trouble he was having. It is just frustrating that it came without a warning from the teacher.
So when we started second grade, we had an IEP meeting to make changes to the current IEP that was for speech only, and add a little more support. At the meeting, I discussed my concerns for further testing and the school asked if I was going to get an updated diagnosis from the doctor since the last one was from when he entered Kindergarten (three years ago). They said that if I was going to do that, then all the testing would be done by the doctor. So once again, the school wants to wash their hands clean of this and have me take care of it. Hopefully, once all is done, the school will be more supportive.
It is so frustrating at times to know what your child needs and not have the school on the same page. The only thing I can continue to do is help my kiddo the best I can and continue to be in his corner at school. I wish this journey was easier, but even on the hardest days, every second is worth it.
Wednesday, September 14, 2016
Her Name Is Penny
Meet the teacher went great. I know My daughter is going to have a wonderful year. How do I know? Because she was so excited about a friend. For weeks leading up to school she was nervous because this year we decided to hold her back, so she wouldn't be following her class of kids that she grew to love last year. We decided to do this because my daughter has a summer birthday, and we wanted to give her more opportunities to bloom by being the oldest in her class.
On the way to Meet the Teacher. I told her that I was sure she would find a friend. I knew God would have the perfect little friend for her there. My daughter was very hesitant. But she walked in, met her teachers, and started looking around.
The next thing I knew, a little girl ran up to her. She said, "Hi! My name is Penny. That is P-E-N-N-Y. " My daughter just looked at her. The little girl went on, "I like bunnies. Can I play with you?" My daughter still stared. The little girl went on, "I want my bunny to go in the cage. Look he fits."
Then the greatest thing happened. My daughter said," My puppy fits too." And my shy little one Who is hesitant to engage with others started playing. I wanted to cry and shout for joy all at the same time.
Coming home all my daughter talked about her new friend Penny. I was so worried about this year, but I fear no more. She found a friend. Thanks Penny!
On the way to Meet the Teacher. I told her that I was sure she would find a friend. I knew God would have the perfect little friend for her there. My daughter was very hesitant. But she walked in, met her teachers, and started looking around.
The next thing I knew, a little girl ran up to her. She said, "Hi! My name is Penny. That is P-E-N-N-Y. " My daughter just looked at her. The little girl went on, "I like bunnies. Can I play with you?" My daughter still stared. The little girl went on, "I want my bunny to go in the cage. Look he fits."
Then the greatest thing happened. My daughter said," My puppy fits too." And my shy little one Who is hesitant to engage with others started playing. I wanted to cry and shout for joy all at the same time.
Coming home all my daughter talked about her new friend Penny. I was so worried about this year, but I fear no more. She found a friend. Thanks Penny!
Saturday, September 3, 2016
Left
It has been two weeks into school ( 10 days), and I honestly am dreading this year. The year started out awesome. For the first time ever, my son walked through the doors like a boss. No meltdown! pure confidence. He looked back and blew me a kiss to tell me , "I got this, mom."
Then 5 days into school (two Fridays ago) something changed when he came home. He was upset and scared. I asked him about his day. He told me that he had to go #2 today. It took him extra long in the bathroom because the toilet paper is so thin. Then, he had to figure out the button and zipper on his pants, and wash his hands. He said when he was done, his class was gone. He went back to the classroom. No one was there. He started walking the halls looking for everyone when a hall monitor found him and took him to the office. His teacher was paged and she came to take him to his class which was in PE. By the time he got there, his class was finishing the mile and the coach told him to just run one lap. He was sad that his class left him, sad that he got in trouble for taking too long, and sad that he missed his favorite class PE.
I told him that I was so proud of him for wiping all by himself. He hates to wipe. He has a huge problem with textures of toilet paper and I am sure the school's thin paper drove him crazy. I also told him that I would talk to his teacher about what happened so he wouldn't get left again.
Monday rolled around and I sent the teacher an email. It had a brief history of my child. I told her that due to his fine motor skills, he may take longer than other children in the bathroom and putting on clothing. I suggested that she let him go first so the class wouldn't wait on him.
She replied and called the whole situation misfortunate and said she would do her best to accommodate his needs.
That day my son came home from school upset again. He told me that he was once again left (however this time with two other students) when changing for PE. His teacher told him he was taking too long and needed to go faster, She couldn't let the whole class be late, so they left and told the other kids to catch up when they were done.
My son told me that he was trying his hardest to go super fast but he wasn't fast enough. He was upset that he was late for PE again. He said that this year is just super hard.
My heart broke. Last year we didn't have these problems. He had an aide in his class that helped him and another little boy. His IEP is up for review this month so I started making calls to the doctor and private therapy place to get my papers lined up to make his days this year better.
Then this last Friday, I get a phone call. The nurse told me that my son walked into the door pole (the one that is in-between the two opening doors) when in line with his class coming in from recess. She was checking him for a concussion and he had a deep gash across his face (not requiring stitches).
I was extremely upset. I still am. I don't know what I am going to do to make this year easier on him. All I know is that I need to figure something out.
Then 5 days into school (two Fridays ago) something changed when he came home. He was upset and scared. I asked him about his day. He told me that he had to go #2 today. It took him extra long in the bathroom because the toilet paper is so thin. Then, he had to figure out the button and zipper on his pants, and wash his hands. He said when he was done, his class was gone. He went back to the classroom. No one was there. He started walking the halls looking for everyone when a hall monitor found him and took him to the office. His teacher was paged and she came to take him to his class which was in PE. By the time he got there, his class was finishing the mile and the coach told him to just run one lap. He was sad that his class left him, sad that he got in trouble for taking too long, and sad that he missed his favorite class PE.
I told him that I was so proud of him for wiping all by himself. He hates to wipe. He has a huge problem with textures of toilet paper and I am sure the school's thin paper drove him crazy. I also told him that I would talk to his teacher about what happened so he wouldn't get left again.
Monday rolled around and I sent the teacher an email. It had a brief history of my child. I told her that due to his fine motor skills, he may take longer than other children in the bathroom and putting on clothing. I suggested that she let him go first so the class wouldn't wait on him.
She replied and called the whole situation misfortunate and said she would do her best to accommodate his needs.
That day my son came home from school upset again. He told me that he was once again left (however this time with two other students) when changing for PE. His teacher told him he was taking too long and needed to go faster, She couldn't let the whole class be late, so they left and told the other kids to catch up when they were done.
My son told me that he was trying his hardest to go super fast but he wasn't fast enough. He was upset that he was late for PE again. He said that this year is just super hard.
My heart broke. Last year we didn't have these problems. He had an aide in his class that helped him and another little boy. His IEP is up for review this month so I started making calls to the doctor and private therapy place to get my papers lined up to make his days this year better.
Then this last Friday, I get a phone call. The nurse told me that my son walked into the door pole (the one that is in-between the two opening doors) when in line with his class coming in from recess. She was checking him for a concussion and he had a deep gash across his face (not requiring stitches).
I was extremely upset. I still am. I don't know what I am going to do to make this year easier on him. All I know is that I need to figure something out.
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