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!
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