When V was in Kindergarten his teacher told me if she knows a child has ADD or ADHD she is not allowed to tell the parents. If she does say that, then the school becomes obligated to have to pursue testing, so instead she can hint around at it and hope the parents pick up on the hints. (I bet many parents don't pick up on these hints.)
I remember V's 1st grade teacher saying to us "there is something about him I hope you figure it out." I just wish she could have told me more about what she was seeing, I felt like she was holding information back due to pressure by the district.
My theory is that schools don't want to have kids with special needs. Why would they? That means they have to provide services (thus more financial costs for them). Only if a kid is extreme are they going to diagnose a child. I've had someone else from another school district that worked in the Special Ed department confirm this too.
At the start of this school year (2nd grade) I asked for a complete battery of tests on V, including ASD. The ASD team came and observed him for 30 minutes, talked to him for 2 minutes and said he did not seem to show any signs or symptoms of ASD. They never asked to have a parent survey done. And in talking to V for just 2 minutes I know you'd be able to pick up the odd inflections in his tone of voice, including the monotone voice, both of which is common in Aspergers kids. I feel the ASD evaluation team from the district did a poor job, it is rather clear V struggles with many ASD attributes.
It sounds good that schools can do the testing - BUT I HAVE LEARNED TO PROCEED WITH EXTREME CAUTION when it comes to the school diagnosing my child with anything. The best solution, use outside services to have my kiddo diagnosed.
Wednesday, May 21, 2014
Tuesday, May 20, 2014
Be an Advocate
I feel like I am constantly at a meeting about V.
I need to leave my office job 1 to 2 times per week for a meeting for V.
I call his teacher 2 to 3 times per week. I email her a couple times a week.
I spend many hours each week focused on advocacy for V.
This is all so new and developing for me and the needs of V are overwhelming.
I want to see him be as successful in life as his potential allows. And I think he has so much he can and will accomplish in life. With every kid, their parent needs them to help navigate the way, but with V, I believe he needs me more than ever to help pave the way for him.
I am constantly asking around, reading materials, asking people, learning about Asperger's. In the last few months since I determined V must be Asperger's I have become more and more convinced that this is indeed what he struggles with.
In order to help him, I need to ask lots of questions, keep the school team on the ball (make sure they are following up quickly with what was promised), keep track of what others said they would do to help him, connect with his teacher often.
Due to the crisis we have had this week at school, I also spent an entire day making phone calls trying to get to the right person in our town. I finally found someone with a nonprofit who helps represent families as an Advocate. A big way they serve as an Advocate is at IEP meetings. I look forward to connecting more with the Advocate rep in town, I can't wait to share my learnings on this blog.
I need to be paying attention to what is going on with V at school, I need to constantly be making sure he is getting the BEST services possible.
I am a huge Advocate for my son. I MUST BE A ADVOCATE FOR HIM. He needs me to.
I need to leave my office job 1 to 2 times per week for a meeting for V.
I call his teacher 2 to 3 times per week. I email her a couple times a week.
I spend many hours each week focused on advocacy for V.
This is all so new and developing for me and the needs of V are overwhelming.
I want to see him be as successful in life as his potential allows. And I think he has so much he can and will accomplish in life. With every kid, their parent needs them to help navigate the way, but with V, I believe he needs me more than ever to help pave the way for him.
I am constantly asking around, reading materials, asking people, learning about Asperger's. In the last few months since I determined V must be Asperger's I have become more and more convinced that this is indeed what he struggles with.
In order to help him, I need to ask lots of questions, keep the school team on the ball (make sure they are following up quickly with what was promised), keep track of what others said they would do to help him, connect with his teacher often.
Due to the crisis we have had this week at school, I also spent an entire day making phone calls trying to get to the right person in our town. I finally found someone with a nonprofit who helps represent families as an Advocate. A big way they serve as an Advocate is at IEP meetings. I look forward to connecting more with the Advocate rep in town, I can't wait to share my learnings on this blog.
I need to be paying attention to what is going on with V at school, I need to constantly be making sure he is getting the BEST services possible.
I am a huge Advocate for my son. I MUST BE A ADVOCATE FOR HIM. He needs me to.
Sunday, May 18, 2014
What's an IEP? 504? REED? Child Study? Manifestation Determination Meeting?
I'm still figuring all of this out but here's what I've learned so far:
1. IEP (Individualized Education Plan) - If you are behind in speech you need an IEP to get speech services at school. He first was evaluated and then the initial IEP was created, but each year around my son's birthday V's speech teacher will set up a meeting with her, my son's teacher, and my husband and I and we redo V's IEP plan. We talk about what his strengths, what he struggles with and she goes over what he still needs to work on. This is the time that I need to push for any services I want school to work on with him. If it is written into his IEP they have to follow-through and do it. The point of the IEP is to set short term and long term goals and to draw out a plan of how he is going to meet those goals.
This past year many things have developed with him in regards to his behavior and a whole team at school team has become involved in helping V. At his IEP this year, he had in attendance, the speech teacher, Occupational Therapist, school Psychologist, Vice Principal, his Teacher, Social Worker, my husband and I.
Changes to the IEP can only be made during the meeting. At the end of the meeting, we should get a print out of the new IEP.
Just recently, our school Psychologist recommended we do a REED. It basically allows us to modify his IEP mid-year. http://www.michiganallianceforfamilies.org/education/reed/
As a parent, I have a right to ask for the REED to happen too. Once the REED is signed the school has 30 days to complete the assessments and hold the IEP.
2. 504 plan - We had V tested for multiple learning disabilities this year. He can't write at all. We thought for sure a learning disability would show up, but instead it showed he was advanced in many areas. If a learning disability had shown up we would've been able to append his IEP, but since academically he is average or above average there isn't much to do.
After we received the results of this testing, I remember looking at the school staff saying, "I know he doesn't qualify for anything, but there has got to be something you can do to help him." It's then that I found out that we could pursue a 504 plan for him. 504 plan would allow V more access to resources. In order to get a 504 plan for him OT observed him and so did the Social Worker. And thanks to the 504 plan plan, V now gets OT once a week, Social Worker services weekly, and a 8th grade student pulls him out of class in the afternoon for sensory work (a sensory diet).
3. Child Study - A parent or a teacher can recommend that the child be put in Child Study. At our school, our school Psychologist gets involved, does observation, and then a team will talk about next steps to help the child. It seems Child Study is often started because a child is not doing well academically or behavior problems.
When V was in Child Study early on (and he had minimal to no behavior problems in school) I felt like this was a huge waste of time and just a paper work procedure the school had to go through. Sometimes I'd walk out of these meetings and wonder, "what are the next steps?"
4. Manifestation Determination Meeting - this is a meeting that is set up to help protect students who have an IEP who are on the verge of being expelled.
Our situation is that something came up one week ago at school where the school is trying to expel our son. The school has told me they called a "Hearing Officer" and the Hearing Officer will hear the case on whether or not to expel him. Sounds like this is someone who works for the district, but not at our specific school. Before the Hearing can take place we have to have a Meeting of Determination because V has an IEP. At this meeting it will be decided if V's behavior one week ago is because of his disability or not. If not, then we will proceed to the Hearing a few days afterward. If it is because of his disability, then he cannot be expelled.
Here's a good resource
1. IEP (Individualized Education Plan) - If you are behind in speech you need an IEP to get speech services at school. He first was evaluated and then the initial IEP was created, but each year around my son's birthday V's speech teacher will set up a meeting with her, my son's teacher, and my husband and I and we redo V's IEP plan. We talk about what his strengths, what he struggles with and she goes over what he still needs to work on. This is the time that I need to push for any services I want school to work on with him. If it is written into his IEP they have to follow-through and do it. The point of the IEP is to set short term and long term goals and to draw out a plan of how he is going to meet those goals.
This past year many things have developed with him in regards to his behavior and a whole team at school team has become involved in helping V. At his IEP this year, he had in attendance, the speech teacher, Occupational Therapist, school Psychologist, Vice Principal, his Teacher, Social Worker, my husband and I.
Changes to the IEP can only be made during the meeting. At the end of the meeting, we should get a print out of the new IEP.
Just recently, our school Psychologist recommended we do a REED. It basically allows us to modify his IEP mid-year. http://www.michiganallianceforfamilies.org/education/reed/
As a parent, I have a right to ask for the REED to happen too. Once the REED is signed the school has 30 days to complete the assessments and hold the IEP.
2. 504 plan - We had V tested for multiple learning disabilities this year. He can't write at all. We thought for sure a learning disability would show up, but instead it showed he was advanced in many areas. If a learning disability had shown up we would've been able to append his IEP, but since academically he is average or above average there isn't much to do.
After we received the results of this testing, I remember looking at the school staff saying, "I know he doesn't qualify for anything, but there has got to be something you can do to help him." It's then that I found out that we could pursue a 504 plan for him. 504 plan would allow V more access to resources. In order to get a 504 plan for him OT observed him and so did the Social Worker. And thanks to the 504 plan plan, V now gets OT once a week, Social Worker services weekly, and a 8th grade student pulls him out of class in the afternoon for sensory work (a sensory diet).
3. Child Study - A parent or a teacher can recommend that the child be put in Child Study. At our school, our school Psychologist gets involved, does observation, and then a team will talk about next steps to help the child. It seems Child Study is often started because a child is not doing well academically or behavior problems.
When V was in Child Study early on (and he had minimal to no behavior problems in school) I felt like this was a huge waste of time and just a paper work procedure the school had to go through. Sometimes I'd walk out of these meetings and wonder, "what are the next steps?"
4. Manifestation Determination Meeting - this is a meeting that is set up to help protect students who have an IEP who are on the verge of being expelled.
Our situation is that something came up one week ago at school where the school is trying to expel our son. The school has told me they called a "Hearing Officer" and the Hearing Officer will hear the case on whether or not to expel him. Sounds like this is someone who works for the district, but not at our specific school. Before the Hearing can take place we have to have a Meeting of Determination because V has an IEP. At this meeting it will be decided if V's behavior one week ago is because of his disability or not. If not, then we will proceed to the Hearing a few days afterward. If it is because of his disability, then he cannot be expelled.
Here's a good resource
Tuesday, May 6, 2014
Early childhood - Speech Delay
At 2 years, 2 months V hardly had any language. He said about 40 words and hardy ever put two words together. I remember thinking how our older son BJ had a burst of words at 18 months. At our 2 year well visit our Pediatrician did not think we needed to pursue anything. It was my mom who finally said we should get him checked out.
We had his hearing tested at an ENT (Ear Nose and Throat Specialist). It was normal.
We had him evaluated by early childhood services. The results said he was mid-to-average behind in speech. (Someone observing him wondered if he had Apraxia but it was never officially diagnosed.) Because of his age he qualified for someone to come to our home once a week for an hour. I think these times were more helpful for me than him.
Here's what I learned
(This should be common information passed onto all new parents, but its not):
1. Kids learn speech by watching you form letters on your own lips. V never makes eye contact so he doesn't do that. We would take toys/objects to our lips and get him to pay attention as we said a word. Now with my two kids that have followed V I see them look at my lips as we are working on a tough sound. I see them try what my lips are doing. V rarely did this.
2. We learned there is an amazing connection in the brain that actually helps kids say and remember a word if they do sign language to it. To me seems like one more complicated thing to have do as they struggle for a word. Doing sign language really helped V.
3. We worked really hard on just getting the first sound. We would say, "ba ba ba" and get him to watch the lips.
As his birthday approached in April we were working on an IEP (whats that? -see my next post) and the speech specialist said that when they turn three they no longer get in home care but they have to go to a school. She thought he'd qualify 1/2 day of school everyday Monday through Friday, that was in March when she said that. But about six weeks later when he went in for an evaluation something had happened. He went from a few words to a ton of words and he ended up only qualifying for 1/2 day 1x a week at school.
Now four years later my husband and I laugh, since his speech took off we haven't been able to unplug him. He talks your head off and never stops to listen to you.
We had his hearing tested at an ENT (Ear Nose and Throat Specialist). It was normal.
We had him evaluated by early childhood services. The results said he was mid-to-average behind in speech. (Someone observing him wondered if he had Apraxia but it was never officially diagnosed.) Because of his age he qualified for someone to come to our home once a week for an hour. I think these times were more helpful for me than him.
Here's what I learned
(This should be common information passed onto all new parents, but its not):
1. Kids learn speech by watching you form letters on your own lips. V never makes eye contact so he doesn't do that. We would take toys/objects to our lips and get him to pay attention as we said a word. Now with my two kids that have followed V I see them look at my lips as we are working on a tough sound. I see them try what my lips are doing. V rarely did this.
2. We learned there is an amazing connection in the brain that actually helps kids say and remember a word if they do sign language to it. To me seems like one more complicated thing to have do as they struggle for a word. Doing sign language really helped V.
3. We worked really hard on just getting the first sound. We would say, "ba ba ba" and get him to watch the lips.
As his birthday approached in April we were working on an IEP (whats that? -see my next post) and the speech specialist said that when they turn three they no longer get in home care but they have to go to a school. She thought he'd qualify 1/2 day of school everyday Monday through Friday, that was in March when she said that. But about six weeks later when he went in for an evaluation something had happened. He went from a few words to a ton of words and he ended up only qualifying for 1/2 day 1x a week at school.
Now four years later my husband and I laugh, since his speech took off we haven't been able to unplug him. He talks your head off and never stops to listen to you.
Friday, May 2, 2014
Why Am I Doing This?
My 9 year old son is a puzzle.
My husband and I have 4 kids. A 10 year old boy (BJ), a 9 year old boy (V)(they are 19 months apart), a 3 year old boy (R) and a 1 year old girl (J). For 4 years it seems like all of our energy and love has been poured into a leaky bucket as we have attended to and tried to help our 9 year old son.
4 years ago we had him assessed for ADD/ADHD. The assessment by a Psychologist was inconclusive and no diagnosis was given. Since then we realized she did a poor job. At the same time V started seeing a Psychologist bi-weekly for counseling services. (We asked a friend who works with diagnosing adults with ADD who she recommended for counseling services for kids with ADD and anxiety.) Working with our Pediatrician we started V on the ADHD medicine, Concerta, it was rather obvious he was ADHD.
2 years ago V was officially diagnosed with ADHD by a Neuro-Psychiatrist. We also started seeing a Psychiatrist for his meds as the Pediatrician was running out of options to try for his meds. Nothing seemed to be working.
We still have not found a medicine combination that works.
About 10 months ago I was doing some research on the internet about "kids and speech delay" and I came across Autism information. Then I said to myself, "I remember hearing something about Asperger's, what is that?" and when I searched the web for characteristics of Asperger's I came across this website and thought to myself "that sounds just like V. " I mentioned it to the Psychologist and Psychiatrist that we've been seeing and they both did not think V was Asperger's so I brushed it off.
In the last few months, I have started to ask that question again. "Could V be Asperger's?" And I've mentioned that to a few people most of them have said, "I've wondered that about him?" Which upsets me, cause I'm thinking, "we've been living in H_ _ _ for the last 4 years, I wish someone had been bold and made that suggestion to us." Perhaps they did and it fell on deaf ears at first. But I think it has to be said a ton of times until it finally sets in that "my son could be Aspergers's."
So here we are present day - completely exhausted, worn down, out of patience, stressed out, at our wits end, often attending to problems at school, my health is suffering due to the constant stress. Our other 3 children show signs in many ways that they too are deeply affected. It's overwhelming, where do we go for help, what do we do. WE JUST DON'T KNOW WHAT TO DO NEXT.
I now have V on a wait list (which is 9 - 11 months long) to be tested for Autism Spectrum Disorder. There are many places we could test in our town, I'm thankful for options but whose the best, its hard to know. Since our initial ADD/ADHD assessment was poorly diagnosed we are hesitant. A couple of highly respected folks and our Psychologist have recommended the place where we are on the wait list. So we wait.
In the meantime, since our Psychologist and Psychiatrist both initially thought that our son is not Aspergers's I have decided to start documenting/blogging as much as I can about V, so that by the time we get to our assessment, we will be able to paint the most clear accurate picture of our son for the Doctor/assessor.
And that is how this blog has developed. V is definitely a puzzle and hard to figure.
My husband and I have 4 kids. A 10 year old boy (BJ), a 9 year old boy (V)(they are 19 months apart), a 3 year old boy (R) and a 1 year old girl (J). For 4 years it seems like all of our energy and love has been poured into a leaky bucket as we have attended to and tried to help our 9 year old son.
4 years ago we had him assessed for ADD/ADHD. The assessment by a Psychologist was inconclusive and no diagnosis was given. Since then we realized she did a poor job. At the same time V started seeing a Psychologist bi-weekly for counseling services. (We asked a friend who works with diagnosing adults with ADD who she recommended for counseling services for kids with ADD and anxiety.) Working with our Pediatrician we started V on the ADHD medicine, Concerta, it was rather obvious he was ADHD.
2 years ago V was officially diagnosed with ADHD by a Neuro-Psychiatrist. We also started seeing a Psychiatrist for his meds as the Pediatrician was running out of options to try for his meds. Nothing seemed to be working.
We still have not found a medicine combination that works.
About 10 months ago I was doing some research on the internet about "kids and speech delay" and I came across Autism information. Then I said to myself, "I remember hearing something about Asperger's, what is that?" and when I searched the web for characteristics of Asperger's I came across this website and thought to myself "that sounds just like V. " I mentioned it to the Psychologist and Psychiatrist that we've been seeing and they both did not think V was Asperger's so I brushed it off.
In the last few months, I have started to ask that question again. "Could V be Asperger's?" And I've mentioned that to a few people most of them have said, "I've wondered that about him?" Which upsets me, cause I'm thinking, "we've been living in H_ _ _ for the last 4 years, I wish someone had been bold and made that suggestion to us." Perhaps they did and it fell on deaf ears at first. But I think it has to be said a ton of times until it finally sets in that "my son could be Aspergers's."
So here we are present day - completely exhausted, worn down, out of patience, stressed out, at our wits end, often attending to problems at school, my health is suffering due to the constant stress. Our other 3 children show signs in many ways that they too are deeply affected. It's overwhelming, where do we go for help, what do we do. WE JUST DON'T KNOW WHAT TO DO NEXT.
I now have V on a wait list (which is 9 - 11 months long) to be tested for Autism Spectrum Disorder. There are many places we could test in our town, I'm thankful for options but whose the best, its hard to know. Since our initial ADD/ADHD assessment was poorly diagnosed we are hesitant. A couple of highly respected folks and our Psychologist have recommended the place where we are on the wait list. So we wait.
In the meantime, since our Psychologist and Psychiatrist both initially thought that our son is not Aspergers's I have decided to start documenting/blogging as much as I can about V, so that by the time we get to our assessment, we will be able to paint the most clear accurate picture of our son for the Doctor/assessor.
And that is how this blog has developed. V is definitely a puzzle and hard to figure.
Subscribe to:
Comments (Atom)