It is cold here and I mean COLD. This is not March weather....I am not sure this is even NY weather. I feel like I am in Northern Canada. Not that I have ever been to Northern Canada, but I imagine this is what it's like. The wind chills are hovering at about 20-30 below 0. This is not fun! I can only imagine my heating bill next month...much less gas for my truck. Someone tell me how the price at the tanks can rise 3 TIMES in one day.
Anyway, I met with the CPSE board for Austin yesterday. They feel additional services are not necessary right now. The lowest marks he received on his Speech and Psych tests were in adaptive behaviors (self help) skills. Toileting and dressing were holding him way back. In the month since we have had those tests, he is nearly day potty trained (YIPPEE!) and more willing to dress himself. I was truly beginning to think that he would go to kindergarten in a pull up. So the board felt that the OT can just add some self help skills to her therapy for now. I am content with that. We did also talk about attention issues. I still feel this all ties into his night time awakenings. I am going to look into having a sleep study done for him. The parent rep for the board mentioned there is a Professor at the local college studying kids, but when I called I was told the child has to have an Autism Spectrum Disorder to qualify. Oh well, at least we have a sleep center locally. Austin's ped is going to do some research also.
I am still working on scheduling an ERG for Austin. As I had said, Boston can't fit him onto their schedule until October. At that point it'll have been 17 months since the previous test. A LOT can happen to his vision in 18 months. I spoke with someone at the TS Alliance who got me information about Sick Children's in Toronto. As much as I want to see Niagara Falls, I don't want the hassle of an 8+ hour trip to Canada. Then I looked into Children's Hospital of Philadelphia. CHOP is only 4.5 hours away. They can fit him into the schedule in 2-3 months. Finally, someone in my IS Support group mentioned Morgan Stanley Children's Hospital in NYC. They can fit him into the schedule in early APRIL! They pulled the tech out of a procedure to talk to me. She is going to call me back later with a firm date.
The relief is palpable! Now I can go back to my cubicle and huddle in front of my heater for warmth.
Showing posts with label CPSE. Show all posts
Showing posts with label CPSE. Show all posts
Wednesday, March 07, 2007
Wednesday, February 07, 2007
Evaluations are DONE!
I can breathe a sign of relief. Austin's speech evaluation was done on Tuesday and the Psychological Evaluation was done today. It's so hard when the therapists ask what is wrong and why the eval is being done, because at first glance he is a bright little boy. But something is off...what that something is, I don't know and I don't know how to describe.
He did great yesterday for the speech part. I didn't request the speech eval, but the CPSE board did. I don't have concerns about his expressive or receptive speech, but I did have some concerns about the articulation of his speech. He can't make the /sp sound. I have tried to encourage correct pronunciation, but he just can't. There are a couple other sounds that are off a little, but no more than a typical child. At least that's my opinion. On the three areas he was tested in, he passed all three. The average range is an 85-115. For receptive speech he had a 102, for expressive he had a 114 and for articulation he had an 86. She then pointed out that only 44% of males aged 4 yrs 5 months have mastered the /sp sound. I was relieved. I wish they printed that info somewhere.
The psych eval today was MUCH longer and more difficult. If not on him, then on me. It's so hard to silently...key word, silently...sit there and not help him. He started off well, but the attention issues became quickly apparent. He has trouble staying on task. You'd think it would be if the subject matter were difficult, but they were subject and topics that I KNOW he knows. For one task he had a page of geometric shapes. Within those shapes he had to draw a specific symbol (2 parallel lines, 2 vertical lines, a plus sign or a circle, as directed). He made it through about 3 shapes and then just started scribbling all over the page. This right here is my MAIN concern about him going to kindergarten next year. 3 hours later when the test was complete, she found that once again he was in the average range. However, his adaptive skills are low (which I expected). She feels she can make a clinical judgement request to get him some special education therapy.
All these average scores are great, but now I need to find past evals and make sure he isn't dropping on those averages. That will be key.
He did great yesterday for the speech part. I didn't request the speech eval, but the CPSE board did. I don't have concerns about his expressive or receptive speech, but I did have some concerns about the articulation of his speech. He can't make the /sp sound. I have tried to encourage correct pronunciation, but he just can't. There are a couple other sounds that are off a little, but no more than a typical child. At least that's my opinion. On the three areas he was tested in, he passed all three. The average range is an 85-115. For receptive speech he had a 102, for expressive he had a 114 and for articulation he had an 86. She then pointed out that only 44% of males aged 4 yrs 5 months have mastered the /sp sound. I was relieved. I wish they printed that info somewhere.
The psych eval today was MUCH longer and more difficult. If not on him, then on me. It's so hard to silently...key word, silently...sit there and not help him. He started off well, but the attention issues became quickly apparent. He has trouble staying on task. You'd think it would be if the subject matter were difficult, but they were subject and topics that I KNOW he knows. For one task he had a page of geometric shapes. Within those shapes he had to draw a specific symbol (2 parallel lines, 2 vertical lines, a plus sign or a circle, as directed). He made it through about 3 shapes and then just started scribbling all over the page. This right here is my MAIN concern about him going to kindergarten next year. 3 hours later when the test was complete, she found that once again he was in the average range. However, his adaptive skills are low (which I expected). She feels she can make a clinical judgement request to get him some special education therapy.
All these average scores are great, but now I need to find past evals and make sure he isn't dropping on those averages. That will be key.
Wednesday, January 31, 2007
A Peek Into Kindergarten
As you all know, I have been stressing a lot over whether or not to send Austin to kindergarten next year. I am leaning towards holding him back, but I feel like the CPSE chair is going to push to place him in school with an Aide. I just don't think he's ready yet.
So one of the local elementary schools had a program last night to give parents an idea of what kindergarten is like. They went over concepts that the children should know and what is included in a typical day. Cognitively, Austin is very smart and he could excel. His trouble is taking that knowledge and making it functional...meaning using it to complete assignments. They make it clear the kids will be writing and have some reading capability at the end of the year, but Austin's fine motor is so far behind that he can't even draw a circle, much less a square. I just think it'll be too much.
After the session, I went to talk to two of the district reading teachers. They both agreed that if I had any reservations, then to keep him back. It made me feel very relieved that the professionals supported my decision. These are teachers that will be working with him. I think that extra year off will not only benefit him in his OT skills, but will give him increased maturity and self confidence. They also very kindly gave me two local pre-k programs to look into.
On another note, I had to sit there and snicker at some of the questions parents asked. Let me qualify this with the statement, that we live in a somewhat 'uppity' district. Actually, I could probably take the somewhat part out altogether! The reason we ended up in this district is because we found a great house in foreclosure and we could afford it. Given my choice, my kids would be in the district jeff and I grew up in...but I digress. If I had a dollar for each parent that asked...if my kid is gifted, what will you do for him/her....I could have bought myself a steak dinner at 677 Prime (HIGH end steakhouse in Albany). I think the principal summed it up best after the umpteenth similar question...'gifted is a term only to be applied after extensive testing, we use the word propensity towards'....slam dunk, two points for the principal, shut those moms right up. And then there is me...'what about services for the kids that need it, are they in class or pulled out.' He started to go into a spiel about not being concerned if the child needs services, it's not a direct reflection of poor rearing..or something along those lines, and I politely interrupted him and said, he's had services for 2.5 years, it was the best thing that ever happened to him. He seemed relieved that a parent was accepting of that situation. Versus, the moms unlike me...
Then there were the moms that commented on the fact the video of the k-garten class showed a boy in a wheelchair...he appeared to have cerebral palsy. At least two moms asked if he (or others like him) would 'interact' with their kids. The principal explained that all kids are mainstreamed, regardless. I could almost hear the groans. It's sad that there are still parents out their teaching their kids intolerance. Maybe I have such an issue with it because I have two kids with needs, but really, it's 2007, why do people need to continue raising kids to be intolerant. Besides this boy looked like he LOVED being part of the group and participating with his peers...why didn't the parents see that, instead of just his wheelchair. But, I suppose that is a post for another day.
Connor is off to genetics today. Not sure if it's just a discussion day or a testing day. I'll let you know. I am still pushing for the Tuberous Sclerosis testing. I am prepared to fight!
So one of the local elementary schools had a program last night to give parents an idea of what kindergarten is like. They went over concepts that the children should know and what is included in a typical day. Cognitively, Austin is very smart and he could excel. His trouble is taking that knowledge and making it functional...meaning using it to complete assignments. They make it clear the kids will be writing and have some reading capability at the end of the year, but Austin's fine motor is so far behind that he can't even draw a circle, much less a square. I just think it'll be too much.
After the session, I went to talk to two of the district reading teachers. They both agreed that if I had any reservations, then to keep him back. It made me feel very relieved that the professionals supported my decision. These are teachers that will be working with him. I think that extra year off will not only benefit him in his OT skills, but will give him increased maturity and self confidence. They also very kindly gave me two local pre-k programs to look into.
On another note, I had to sit there and snicker at some of the questions parents asked. Let me qualify this with the statement, that we live in a somewhat 'uppity' district. Actually, I could probably take the somewhat part out altogether! The reason we ended up in this district is because we found a great house in foreclosure and we could afford it. Given my choice, my kids would be in the district jeff and I grew up in...but I digress. If I had a dollar for each parent that asked...if my kid is gifted, what will you do for him/her....I could have bought myself a steak dinner at 677 Prime (HIGH end steakhouse in Albany). I think the principal summed it up best after the umpteenth similar question...'gifted is a term only to be applied after extensive testing, we use the word propensity towards'....slam dunk, two points for the principal, shut those moms right up. And then there is me...'what about services for the kids that need it, are they in class or pulled out.' He started to go into a spiel about not being concerned if the child needs services, it's not a direct reflection of poor rearing..or something along those lines, and I politely interrupted him and said, he's had services for 2.5 years, it was the best thing that ever happened to him. He seemed relieved that a parent was accepting of that situation. Versus, the moms unlike me...
Then there were the moms that commented on the fact the video of the k-garten class showed a boy in a wheelchair...he appeared to have cerebral palsy. At least two moms asked if he (or others like him) would 'interact' with their kids. The principal explained that all kids are mainstreamed, regardless. I could almost hear the groans. It's sad that there are still parents out their teaching their kids intolerance. Maybe I have such an issue with it because I have two kids with needs, but really, it's 2007, why do people need to continue raising kids to be intolerant. Besides this boy looked like he LOVED being part of the group and participating with his peers...why didn't the parents see that, instead of just his wheelchair. But, I suppose that is a post for another day.
Connor is off to genetics today. Not sure if it's just a discussion day or a testing day. I'll let you know. I am still pushing for the Tuberous Sclerosis testing. I am prepared to fight!
Tuesday, January 23, 2007
Austin
Austin's OT and I met with the school's CPSE board today to review his therapy schedule and needs. We went in asking for a speech and special education evaluation and an increase to his OT therapy. We all feel that he has started to regress again. He is very smart but he is having troubles with auditory processing and attending to tasks. He can be given an assignment and understands what he has to do, but just can't/won't do it. He also is loosing ground in his OT skills. He can copy a circle and a plus but is incapable of drawing a square. He is no where near ready to begin writing letters. He just doesn't have the fine motor control. He also is still having difficulties feeding himself. He can do okay with a fork, but just can't control a spoon well. I try and encourage proper grip, but it ends up turning into a struggle and him deciding he doesn't want to eat. He doesn't want to fail, but he also is not receptive to constructive criticism.
The chairperson of the CPSE committee agreed to increase OT services. She is also requesting a new psych and speech evaluation. We are encouraged that the results of this will lead to additional services. Even though the services will be a huge help, we still think he won't be ready for kindergarten this fall. We just don't think he has the maturity and skills to handle the increasing demands. We aren't quite sure yet what we will do...perhaps a nursery school and some home schooling. We'll have to see how the next few months unfold before we firm up our plans. But at least we have some more ideas. We'll keep you posted.
The chairperson of the CPSE committee agreed to increase OT services. She is also requesting a new psych and speech evaluation. We are encouraged that the results of this will lead to additional services. Even though the services will be a huge help, we still think he won't be ready for kindergarten this fall. We just don't think he has the maturity and skills to handle the increasing demands. We aren't quite sure yet what we will do...perhaps a nursery school and some home schooling. We'll have to see how the next few months unfold before we firm up our plans. But at least we have some more ideas. We'll keep you posted.
Wednesday, January 10, 2007
More on Austin
Cindy and Amber- thank you for the comments, I will respond at the end.
It was a long night of discussions with Jeff, my MIL (A's nursery school teacher) and Nancy, his former special ed teacher. Below are some comments that both his MIL and I put together. These will be incorporated into a request for additional services and/or evaluations.
Mom & Dad's concerns-
I am unsure he is emotionally prepared for the independence of k-garten. He still needs direct support for feeding and dressing. He is not 100% potty trained and is unable to prepare to toilet on his own. Other children have picked up on these and he is occasional 'targeted' because of it. At this point when this occurs, he will just find other children to play with. It doesn't occur to him that if he just does it on his own he will be accepted by his peers as an equal.
His medical issues play into the emotional stability as well. Historically when he is having medication level issues or increased activity on his EEG it initially appears as emotional problems. He becomes clingy and needs extra support to transition through settings that would normally be easy for him. We are currently waiting on an EEG to confirm this issue and increase medications as necessary. (I have a call into Dr R in Boston to get his opinion. He has a 24 VEEG scheduled 2/14, but I am not sure I want to wait 5 weeks to make med changes. He's gained nearly 10 lbs since we put him back on Vigabatrin and we have yet to change the dosage. So even though the dosage hasn't changed, he's actually getting less med because of the increased weight. At the same time I don't want to make a med cahnge if there hasn't been a change to his EEG...this is never easy)
Another concern is his auditory processing. He tends to zone out/get lost in active settings. If there is a lot happening around him he appears to have issues concentrating on one single task. To get his attention it requires mom/teacher to get down on his level and direct his face towards yours. Then he appears to connect to you and will respond. Again this could be part of his medical findings. Brain misfiring on an EEG causes disorganization in the mind and difficulty connecting thought processes.
It is important to remember that since Austin is a September baby, and the cutoff for beginning school is December 1st, he will statistically be younger than 75% of his classmates. Based on his extensive medical history (seizures, abnormal EEG findings and brain lesion of unknown etiology) and unstable medical prognosis at this point, we are concerned about entering him into a setting where he has 2 strikes against him already. His father and I feel that with another year of maturity and educational assistance he will be in a better position to excel with less support in a traditional kindergarten setting.
MIL's concerns-
Austin can count by rote to 14 and can count objects, but only recognizes numbers 1-5. He knows the letters A, B, C, D, M, X, O. He understands the concept of same and different. He knows colors & shapes. He also appears to understand the concepts of opposites and rhyming words. (added note- last night Austin was looking at the letter W, he turned it over and said this is for McDonald's and turned it back over and said this is for Wendy's. Aside from the fact that my kids know fast food so well(!!), the fact that he understood the difference was pretty cool to me. And just a note my kids favorite McD's food is the fruit and yogurt parfait and the apples...so don't think they are living off nuggets and fries!)
My main concerns are in the areas of small muscle co-ordination and work skills. Austin can't control a pencil or marker well enough to print a letter or number or to draw anything recognizable. He doesn't color, he scribbles. When doing a worksheet he needs 1 on 1 help to complete the page.
At this point, I can't see Austin being able to handle seatwork on his own successfully in a Kindergarten setting.
Austin is social, friendly and shares well. He enjoys doing arts and crafts. He likes to be read to and can answer questions about the story.
----------
It's hard, part of me is saying look how far he has come in the two years of therapy he has received and Nancy reminded me of this. She started working with him shortly after his 2nd birthday and he was virtually non-verbal and had zero play skills. So these concerns are pretty minimal considering.
My biggest problem right now is that I don't know what options are available. My first thought is I would love it if Nisky offered a pre-K program. I think this would be the ideal solution. They do offer an extended day k-garten and/or teacher aide for identified kids. These are great but it doesn't change the fact that he will be statistically younger than 75% of his classmates based on his birthday.
They used to offer a pre-1st program 20 years ago, but I am not sure they still do. I am slightly against two years of k-garten because I don't want him to have the stigma of 'being held back'. Yes I realize I am talking about 5 and 6 year old kids, but if his 4 and 5 year classmates can make fun of him for still wearing a pull up, a 6 yr old will make fun of him for being held back. Plus if he waits a year, he will be in class with Carly, our neighbor. She is a smart cookie and I think she'd be a built in support system for him.
So we are taking steps, but I just don't know where they are going to lead us at this point. Our lives up until now have taken the road less traveled, but we are beating a path and trying hard to find our way. We'll get there...the journey is far from over.
It was a long night of discussions with Jeff, my MIL (A's nursery school teacher) and Nancy, his former special ed teacher. Below are some comments that both his MIL and I put together. These will be incorporated into a request for additional services and/or evaluations.
Mom & Dad's concerns-
I am unsure he is emotionally prepared for the independence of k-garten. He still needs direct support for feeding and dressing. He is not 100% potty trained and is unable to prepare to toilet on his own. Other children have picked up on these and he is occasional 'targeted' because of it. At this point when this occurs, he will just find other children to play with. It doesn't occur to him that if he just does it on his own he will be accepted by his peers as an equal.
His medical issues play into the emotional stability as well. Historically when he is having medication level issues or increased activity on his EEG it initially appears as emotional problems. He becomes clingy and needs extra support to transition through settings that would normally be easy for him. We are currently waiting on an EEG to confirm this issue and increase medications as necessary. (I have a call into Dr R in Boston to get his opinion. He has a 24 VEEG scheduled 2/14, but I am not sure I want to wait 5 weeks to make med changes. He's gained nearly 10 lbs since we put him back on Vigabatrin and we have yet to change the dosage. So even though the dosage hasn't changed, he's actually getting less med because of the increased weight. At the same time I don't want to make a med cahnge if there hasn't been a change to his EEG...this is never easy)
Another concern is his auditory processing. He tends to zone out/get lost in active settings. If there is a lot happening around him he appears to have issues concentrating on one single task. To get his attention it requires mom/teacher to get down on his level and direct his face towards yours. Then he appears to connect to you and will respond. Again this could be part of his medical findings. Brain misfiring on an EEG causes disorganization in the mind and difficulty connecting thought processes.
It is important to remember that since Austin is a September baby, and the cutoff for beginning school is December 1st, he will statistically be younger than 75% of his classmates. Based on his extensive medical history (seizures, abnormal EEG findings and brain lesion of unknown etiology) and unstable medical prognosis at this point, we are concerned about entering him into a setting where he has 2 strikes against him already. His father and I feel that with another year of maturity and educational assistance he will be in a better position to excel with less support in a traditional kindergarten setting.
MIL's concerns-
Austin can count by rote to 14 and can count objects, but only recognizes numbers 1-5. He knows the letters A, B, C, D, M, X, O. He understands the concept of same and different. He knows colors & shapes. He also appears to understand the concepts of opposites and rhyming words. (added note- last night Austin was looking at the letter W, he turned it over and said this is for McDonald's and turned it back over and said this is for Wendy's. Aside from the fact that my kids know fast food so well(!!), the fact that he understood the difference was pretty cool to me. And just a note my kids favorite McD's food is the fruit and yogurt parfait and the apples...so don't think they are living off nuggets and fries!)
My main concerns are in the areas of small muscle co-ordination and work skills. Austin can't control a pencil or marker well enough to print a letter or number or to draw anything recognizable. He doesn't color, he scribbles. When doing a worksheet he needs 1 on 1 help to complete the page.
At this point, I can't see Austin being able to handle seatwork on his own successfully in a Kindergarten setting.
Austin is social, friendly and shares well. He enjoys doing arts and crafts. He likes to be read to and can answer questions about the story.
----------
It's hard, part of me is saying look how far he has come in the two years of therapy he has received and Nancy reminded me of this. She started working with him shortly after his 2nd birthday and he was virtually non-verbal and had zero play skills. So these concerns are pretty minimal considering.
My biggest problem right now is that I don't know what options are available. My first thought is I would love it if Nisky offered a pre-K program. I think this would be the ideal solution. They do offer an extended day k-garten and/or teacher aide for identified kids. These are great but it doesn't change the fact that he will be statistically younger than 75% of his classmates based on his birthday.
They used to offer a pre-1st program 20 years ago, but I am not sure they still do. I am slightly against two years of k-garten because I don't want him to have the stigma of 'being held back'. Yes I realize I am talking about 5 and 6 year old kids, but if his 4 and 5 year classmates can make fun of him for still wearing a pull up, a 6 yr old will make fun of him for being held back. Plus if he waits a year, he will be in class with Carly, our neighbor. She is a smart cookie and I think she'd be a built in support system for him.
So we are taking steps, but I just don't know where they are going to lead us at this point. Our lives up until now have taken the road less traveled, but we are beating a path and trying hard to find our way. We'll get there...the journey is far from over.
Tuesday, January 09, 2007
Panic
I have created panic and chaos...I didn't mean to! The other day we got Austin's kindergarten registration paperwork in the mail. Jeff and I have been talking and thinking about holding him off a year. At the same time the school district is hvaing a meeting for kids transitioning from CPSE to CSE (committee on preschool ed to comm. of school ed). So I called the Office for Support Services and explained and asked what I should do...where do I go from here...etc. She told me that if we have concerns about him not being ready, then we need to have a meeting with the CPSE to discuss his case. But that the therapist and I each needed to get something in writing to her by Friday to get him on January's schedule.
At this point he would only turn 5 days before school started, so he'd be one of the youngest in his class. Is it fair to start him when he's already behind when perhaps holding him off a year would make a big difference? Our concerns include fine motor, social emotional and auditory processing. I think his cognitive is okay. I do have some minor speech concerns, mostly with articulation and fluency. We are also concerned that med levels may need to be adjusted. He's been off for the last few months. Hard to pinpoint exactly why and how, but the last time I had this feeling, the result was not good.
So, I called his OT and left her a message, explaining our concerns and that we were thinking about holding him back a year. She freaked! First off this poor woman only sees him for 30 mins a week and she's not intimately aware of his full medical history. Well the OT called Ms. Nancy, Austin's old special ed teacher and a WONDERFUL woman. They talked and then the OT called me today. She said it NEVER crossed her mind that we wouldn't send him to kindergarten. She reminded me that if Austin still qualifies for services that once he tranfers to CSE, he MUST get those services in the district. This would be fine except he spends his days out of district. And then add onto that, if he doesn't qualify for CSE services then we have to try and get him covered under section 504 of the Vocational Rehabilitation Act. To do that he must meet one of 12 disability criteria and I am not 100% positive that Epilepsy alone would qualify him. Plus these services would only be available in the kindergarten setting. Do I want him to missa full year of potential services??
So now I don't know what to do. Am I over reacting...does he need a full eval including psych all over...is he ready for kindergarten with just some support? I don't know. I think I need to call Ms. Nancy myself. She has always been very good with Austin and still visits him even though she is no longer paid to. Perhaps she can visit him this week and give me some insight. Part of me wants a full eval again...just to get a new baseline. Part of me says I am opening a can of worms.
I guess I will have to wait and see how this plays out.
At this point he would only turn 5 days before school started, so he'd be one of the youngest in his class. Is it fair to start him when he's already behind when perhaps holding him off a year would make a big difference? Our concerns include fine motor, social emotional and auditory processing. I think his cognitive is okay. I do have some minor speech concerns, mostly with articulation and fluency. We are also concerned that med levels may need to be adjusted. He's been off for the last few months. Hard to pinpoint exactly why and how, but the last time I had this feeling, the result was not good.
So, I called his OT and left her a message, explaining our concerns and that we were thinking about holding him back a year. She freaked! First off this poor woman only sees him for 30 mins a week and she's not intimately aware of his full medical history. Well the OT called Ms. Nancy, Austin's old special ed teacher and a WONDERFUL woman. They talked and then the OT called me today. She said it NEVER crossed her mind that we wouldn't send him to kindergarten. She reminded me that if Austin still qualifies for services that once he tranfers to CSE, he MUST get those services in the district. This would be fine except he spends his days out of district. And then add onto that, if he doesn't qualify for CSE services then we have to try and get him covered under section 504 of the Vocational Rehabilitation Act. To do that he must meet one of 12 disability criteria and I am not 100% positive that Epilepsy alone would qualify him. Plus these services would only be available in the kindergarten setting. Do I want him to missa full year of potential services??
So now I don't know what to do. Am I over reacting...does he need a full eval including psych all over...is he ready for kindergarten with just some support? I don't know. I think I need to call Ms. Nancy myself. She has always been very good with Austin and still visits him even though she is no longer paid to. Perhaps she can visit him this week and give me some insight. Part of me wants a full eval again...just to get a new baseline. Part of me says I am opening a can of worms.
I guess I will have to wait and see how this plays out.
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