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Preschool eligability under special needs denied today for child with PDD-NOS
The school told me today that they don't see a need for my child to have special needs services as she was evaluated in their classroom and "she should be the model in the classroom" according to the principal. According to their team, she was the perfect child, had no sensory issues, followed instructions, played next to other children (even though she never initiated an interaction), so they saw no need as educationally she was wonderful. They continued to suggest that we, the parents, seek out guidance for ourselves instead stating that her sensory stuff may have become behavioral as she is expecting a certain reaction from us. I got so angry during this meeting as these people have never spent a day with my daughter and have not experienced her daily fears, anxieties and contant needs to be reassured that all is okay. She vomits for baths, has had chronic reflux and feeding issues from birth and they said that this vomiting is now a learned behavior from the medical condition (which I agree with to a point). I even posted images of my daughter for them to review and they basically told me that it doesn't matter how she responds in the world, but in the classroom from an educational standpoint, she is completely wonderful. They also said they don't see her as a PDD or autistic spectrum child which I just don't know anymore. My question is, should I just suck it up and accept the refusal for services since she is thriving so well, or should we fight this? Our videos were put on youtube to get some help but I am not even sure she has autism now...www.youtube.com/threeredheads
I have posted daughter instead of son - excuse me, it's still early in the UK!!
I too hate confrontation. But they sent me in circles for years until I could have quite happily collapsed in a heap of tears and just banged my head on the wall!
What turned me round, and made me so angry I nearly hit someone. Was two people came to my house from the local education authority to persuade me not to move my daughter to the specialist school he is in now. They told me that because children on the autistic spectrum need extra support and can get upset easily, that adding just one more child into that classroom would have a detrimental effect on the other children. But they were quite happy to exclude my son and weren't at all worried about the detrimental effect that was having on his education, self esteem and his future prospects. So I phoned a specialist solicitor and got the ball rolling. I felt that I had gone as far as I could with the information I had at that time. Now I have been to an educational tribunal, I would be prepared to go again on my own if necessary. Last week I even had a meeting with the Head of Special Needs Services at my local Council. Progress is slow. But every parent in area Town and City that makes a stand for their child, improves the overall services for the children in that area. If enough parents in a school are getting input from a SALT and Ed Psych, then it would become cost effective for those professionals to be permanently based in that school. If we get our children on every waiting list applicable to them (regardless of waiting times), it will mean that staffing provision will have to be put into place to meet those needs.
As your daughter also uses words from TV etc google Delayed Echolalia and Autism. This is a different way that some children on the autistic spectrum learn to speak. A SALT experienced with autistic spectrum disorders would know about this. The fact that she has an English accent shows that she has picked it up and copied it from TV. My son uses alot of USA terminology ie. "common you guys" (we don't use the term 'guys' in the UK).
Once you begin to identify, and list the areas of difficulty you think she has you can specifically ask the relevant professional (always in writing) to assess for "echolalia, strange dialect or intonation of voice".
As she gets older you may want her assessed for "Semantic Pragmatic Speech Disorder". And, as previously stated, in the UK if a child has a speech disorder they cannot be discharged from SALT throughout their school years.
With the difficulties you have described a SALT should be involved. Her expressive language maybe well above her receptive language. She also probably has literal interpretation of language.
Good luck with the advocate.
Just remember to start teasing out and identifying her needs. Then when you write for her to be assessed in these areas, or question how they will support your daughters difficulties of X, Y and Z, they have to respond. If they ignore you that is evidence, if they deny you supports that is evidence, if they under support her that is evidence, if they support her and she doesn't make a full years academic progress that is evidence. It is a slow step by step process, but it does all add up and eventually you will have enough evidence for her to get the supports she needs at the level she needs it.
What turned me round, and made me so angry I nearly hit someone. Was two people came to my house from the local education authority to persuade me not to move my daughter to the specialist school he is in now. They told me that because children on the autistic spectrum need extra support and can get upset easily, that adding just one more child into that classroom would have a detrimental effect on the other children. But they were quite happy to exclude my son and weren't at all worried about the detrimental effect that was having on his education, self esteem and his future prospects. So I phoned a specialist solicitor and got the ball rolling. I felt that I had gone as far as I could with the information I had at that time. Now I have been to an educational tribunal, I would be prepared to go again on my own if necessary. Last week I even had a meeting with the Head of Special Needs Services at my local Council. Progress is slow. But every parent in area Town and City that makes a stand for their child, improves the overall services for the children in that area. If enough parents in a school are getting input from a SALT and Ed Psych, then it would become cost effective for those professionals to be permanently based in that school. If we get our children on every waiting list applicable to them (regardless of waiting times), it will mean that staffing provision will have to be put into place to meet those needs.
As your daughter also uses words from TV etc google Delayed Echolalia and Autism. This is a different way that some children on the autistic spectrum learn to speak. A SALT experienced with autistic spectrum disorders would know about this. The fact that she has an English accent shows that she has picked it up and copied it from TV. My son uses alot of USA terminology ie. "common you guys" (we don't use the term 'guys' in the UK).
Once you begin to identify, and list the areas of difficulty you think she has you can specifically ask the relevant professional (always in writing) to assess for "echolalia, strange dialect or intonation of voice".
As she gets older you may want her assessed for "Semantic Pragmatic Speech Disorder". And, as previously stated, in the UK if a child has a speech disorder they cannot be discharged from SALT throughout their school years.
With the difficulties you have described a SALT should be involved. Her expressive language maybe well above her receptive language. She also probably has literal interpretation of language.
Good luck with the advocate.
Just remember to start teasing out and identifying her needs. Then when you write for her to be assessed in these areas, or question how they will support your daughters difficulties of X, Y and Z, they have to respond. If they ignore you that is evidence, if they deny you supports that is evidence, if they under support her that is evidence, if they support her and she doesn't make a full years academic progress that is evidence. It is a slow step by step process, but it does all add up and eventually you will have enough evidence for her to get the supports she needs at the level she needs it.
I think they switched our children at birth...LOL...you're talks with an American accent and mine talks with an English accent!!!!! That is too funny...She says "Mommy...I cannot do this." saying the word "cannot out loud". From what I am reading out children sound so much alike. Mine too is mesmerized by movies such as Elvis Presley, Wizard of Oz, old fashioned musicals and will sit and watch over and over again as if it is the first time. She learns the words as well and you can hear it in her everyday language (some her own speech, some what others have said before, and some from tv all pieced together)...funny exact same thing you are describing. It makes her sound brilliant to the person who doesn't know where she is getting the info, but I know where the words are from. My DD also talks at people...very similar to yours....AMAZING! Sounds like your son is soooo similar to my DD! I went today to a couple preschool and have been calling her GI and developmental doctors to alert them. I also called today for an Advocate which is a free service to assist parents in getting services for children with disabilities. I have been a busy bee today.
I was reading about your fight for services and I admire how you have been able to really advocate for your son's needs. I am not usually as vocal, so I have been thinking that maybe the Lord meant for this to give my DD's mom a voice. I hate confrontation so this must be my test to fight for my DD. I am going to fight for her as I know that without services, she may get worse and I don't want that for her.
I was reading about your fight for services and I admire how you have been able to really advocate for your son's needs. I am not usually as vocal, so I have been thinking that maybe the Lord meant for this to give my DD's mom a voice. I hate confrontation so this must be my test to fight for my DD. I am going to fight for her as I know that without services, she may get worse and I don't want that for her.
In the UK we have Statements which are documents that are legally binding. We also have IEPs in school which are reviewed on a termly basis. I have taken the following information about IEPs for you to print off, read and keep. It is very important for IEPs to be specific because that is how you know if your daugher is achieving targets and making progress. If it is badly written you won't know what, if anything, is being achieved and you won't have any evidence that she needs extra input or supports.
"Goals are all part of writing the Individualized Education Plan-Program (IEP). More importantly, writing good goals that meet the specific child's need are critical to the process. A large number of educational jurisdictions tend to use SMART goals which stand for:
Specific
Measurable
Achievable
Relevant
Time Limited
Using SMART goals makes a lot of sense when writing your IEP goals. After all, well written goals will describe what the child will do, when and how he'll do it and what the time frame will be for achieving it.
When writing goals, keep the following tips in mind:
Be very specific about the action. For instance: raise his/her hand for attention, use a classroom voice, read the pre-primer Dolch Words, complete homework, keep hands to him/herself, point to I want, I need augmentative symbols.
Then you need to provide a time frame or location/context for the goal. For instance: during silent reading time, while in the gym, at recess time, by the end of 2nd term, point to 3 picture symbols when something is needed.
Then decide what determines the success of the goal. For instance:how many consecutive periods will the child remain on task? How many gym periods? How fluent will the child read the words - without hesitation and prompting? What percentage of accuracy? How often?
What to Avoid
A vague, broad or general goal is unacceptable in the IEP. Goals that state will improve reading ability, will improve his/her behavior, will do better in math should be stated much more specifically with reading levels or benchmarks, or frequency or level of improvement to attain and a time frame for when the improvement will occur. Using "will improve his/her behavior'is also not specific. Although you may want behavior improved, which specific behaviors are targeted first along with when and how are a critial part of the goal.
If you can remember the meaning behind the acronym SMART, you will be prompted to write better goals that will lead to student improvement. It's also a good practice to include the child in setting goals if appropriate. This will ensure that the student takes ownership over reaching his/her goals. Make sure you review goals regularly. Goals will need to be reviewed to ensure that the goal is 'achievable'. Setting a goal too high is almost as bad as not having a goal at all.
Some Final Tips:
Include any curricular modifications. If the curriculum states that the goal is to count to 50 and you state count to 10, this is a modification.
Include any curricular accommodations. This will include things like: scribing, a quite setting to take tests, assistive technology etc.
Provide any support staff that will be involved in the IEP
Indicate materials and or resources to be used
Most importantly, make sure the IEP is based on priorities for the student.
Try the following sample goals:
Behavior Goals
Written Comprehension
Self Esteem Goals
ADD Goals"
Also, whatever the target is, they need the child to be able to demonstrate it between 75-100% (100% is a better specific target) of the time for it to be proven that they have learnt it. Then if they lose that ability you know that they are learning and losing skills (which is a common autistic characteristic). If you only require a 50% success rate, you never know if the item in question was ever learnt.
"Goals are all part of writing the Individualized Education Plan-Program (IEP). More importantly, writing good goals that meet the specific child's need are critical to the process. A large number of educational jurisdictions tend to use SMART goals which stand for:
Specific
Measurable
Achievable
Relevant
Time Limited
Using SMART goals makes a lot of sense when writing your IEP goals. After all, well written goals will describe what the child will do, when and how he'll do it and what the time frame will be for achieving it.
When writing goals, keep the following tips in mind:
Be very specific about the action. For instance: raise his/her hand for attention, use a classroom voice, read the pre-primer Dolch Words, complete homework, keep hands to him/herself, point to I want, I need augmentative symbols.
Then you need to provide a time frame or location/context for the goal. For instance: during silent reading time, while in the gym, at recess time, by the end of 2nd term, point to 3 picture symbols when something is needed.
Then decide what determines the success of the goal. For instance:how many consecutive periods will the child remain on task? How many gym periods? How fluent will the child read the words - without hesitation and prompting? What percentage of accuracy? How often?
What to Avoid
A vague, broad or general goal is unacceptable in the IEP. Goals that state will improve reading ability, will improve his/her behavior, will do better in math should be stated much more specifically with reading levels or benchmarks, or frequency or level of improvement to attain and a time frame for when the improvement will occur. Using "will improve his/her behavior'is also not specific. Although you may want behavior improved, which specific behaviors are targeted first along with when and how are a critial part of the goal.
If you can remember the meaning behind the acronym SMART, you will be prompted to write better goals that will lead to student improvement. It's also a good practice to include the child in setting goals if appropriate. This will ensure that the student takes ownership over reaching his/her goals. Make sure you review goals regularly. Goals will need to be reviewed to ensure that the goal is 'achievable'. Setting a goal too high is almost as bad as not having a goal at all.
Some Final Tips:
Include any curricular modifications. If the curriculum states that the goal is to count to 50 and you state count to 10, this is a modification.
Include any curricular accommodations. This will include things like: scribing, a quite setting to take tests, assistive technology etc.
Provide any support staff that will be involved in the IEP
Indicate materials and or resources to be used
Most importantly, make sure the IEP is based on priorities for the student.
Try the following sample goals:
Behavior Goals
Written Comprehension
Self Esteem Goals
ADD Goals"
Also, whatever the target is, they need the child to be able to demonstrate it between 75-100% (100% is a better specific target) of the time for it to be proven that they have learnt it. Then if they lose that ability you know that they are learning and losing skills (which is a common autistic characteristic). If you only require a 50% success rate, you never know if the item in question was ever learnt.
Regarding my son's eating. He would totally refuse certain textures such as peas, beans etc. He gagged and vomited easily. He sometimes over ate and vomited. He eats a broad range of food, and recently is trying and eating new foods. He won't eat foods that are a mixture of textures such as pieces or chunky soups. He likes each food item to be separate and recognisable for what it is.
Regarding sleep. He gets scared at night time. Actually, even in the day he won't go upstairs unless accompanied by an adult and with all the lights on. Sometimes he sleeps in his bedroom with the light on. On those nights he usually wakes up in the middle of the night and comes into our bed. But most nights he either sleeps with his dad or with me. He finds it hard to get to sleep at night, and in the morning he is still tired and finds it hard to get up. Then we usually have refusal to go to school and anxiety and tears about that. Once he is there he is usually okay, although he does have meltdowns and tantrums there.
What I have found out many times about autism. Is that is isn't that the child cannot do certain things eg. theory of mind, or social interaction etc. It is the fact that they cannot process the information quick enough and make the correct connections between information or situations to be able to apply it at the time necessary. My son is capable of watching a film and explaining why the child is unhappy or what they are thinking. However, in the real world we don't view it on a TV screen. Things happen out of our view or are said and we don't hear them. He needs all of the information presented to him literally for him to grasp it. So they do have emotions, and empathy, and social understanding, and theory of mind etc - but not as we do.
Regarding sleep. He gets scared at night time. Actually, even in the day he won't go upstairs unless accompanied by an adult and with all the lights on. Sometimes he sleeps in his bedroom with the light on. On those nights he usually wakes up in the middle of the night and comes into our bed. But most nights he either sleeps with his dad or with me. He finds it hard to get to sleep at night, and in the morning he is still tired and finds it hard to get up. Then we usually have refusal to go to school and anxiety and tears about that. Once he is there he is usually okay, although he does have meltdowns and tantrums there.
What I have found out many times about autism. Is that is isn't that the child cannot do certain things eg. theory of mind, or social interaction etc. It is the fact that they cannot process the information quick enough and make the correct connections between information or situations to be able to apply it at the time necessary. My son is capable of watching a film and explaining why the child is unhappy or what they are thinking. However, in the real world we don't view it on a TV screen. Things happen out of our view or are said and we don't hear them. He needs all of the information presented to him literally for him to grasp it. So they do have emotions, and empathy, and social understanding, and theory of mind etc - but not as we do.
At my son's previous school (he was mainstream only for 3 years), the headmistress told me that "we cannot change all the systems in the school just for your son". I asked her to put that in writing and she did. So I had evidence that she was refusing to meet my son's needs (which is illegal), and by refusing to differentiate work and make the environment autism friendly he was 'excluded' and not 'included'.
I moved him to another school this September eventhough the educational authority threatened me and said they would put him in a mainstream only classroom with no supports (ie. they tried to scare me into keeping him where he was). So I moved him anyway and dared them not to support him or withdraw his placement as that would be illegal too under Disability Discrimination Law.
Why do we have to do this??? Don't we have enough on our plates anyway. It is very unfortunate that you find yourself in these confrontational situations, but you are the advocate for your daughter.
Your videos were very good. They are good evidence. Always check with professionals what they are assessing for and what they have found and what they recommend. For example, after three years I asked the SALT what the heading "social and behavioural assessments" meant because on their standardised forms, in three years, this heading always said "on this occasion we did not have the opportunity to assess him". She explained that this section was about Social Interaction and Play Skills. So I wrote a letter of complaint and asked why a child with a diagnosis of an autistic spectrum disorder, which as part of the diagnostic criteria has to have difficulties with both language and social interaction and play skills, had never been assessed or supported in those areas? I requested a SALT with experience of autistic spectrum disorders, and I insisted that they put together a social communication and interaction programme for him and that the school supported him during playtimes and breaktimes.
In the end I was hitting my head against a brick wall, so I called in private reports, got a solicitor and went to court and won. And my son is high functioning autistic. He too wants to play with children, and now is doing much better. But he needs supporting, and will probably always need supporting during his school years.
Don't be afraid to complain. Don't be afraid to ask professionals to explain themselves to you in writing and to justify what they have/haven't done.
Your daughter might benefit from a listening therapy. My son is doing one at the moment called Listening With the Whole Body. His Occupational Therapist has been trained in this. Again, I got that therapy because the private reports stated he had auditory processing and auditory memory problems, as well as auditory processing disorder - he also has sensory integration disorder. So I went to my GP and said that my son had a medically recognised disorder which the health service could not assess for or treat and that I had found a clinic in London UK that did a listening therapy that had proven clinical evidence that it caused improvements. My GP agreed to put in an application to fund this treatment. Lo and behold, a couple of months later I am approached by the community OT team who have been instructed by the health care trust to begain this therapy on him. No other child in his school gets this therapy. So, those that ask get. It would have been impossible for the hospital trust to justify turning my son down for this treatment because he has the medical condition. And it is not my son's fault that they don't have the facilities or specialists in our city to meet those needs.
Regarding potty training, my son was out of nappies at 3 years. Fortunately we haven't had many of the typical problems others have with that.
My son has always responded to other childrens attempts to play with him. But he didn't know how to initiate it himself. And frequently he could sustain play. When he was younger he wanted to re-enact things and other children would not comply and say the same words and do the same movements he required. He also found it hard to follow their spontaneous imaginative play. If the children were playing together and then got up and ran off to another part of the playground my son would not automatically get up and follow them, he would stay where he was. He frequently gets sidetracked whilst playing ie. something within the game will interest him and he will focus on that and become oblivious to what the other children are doing.
But at 8 he has made incredible progress. He is very observant and clever. He tends to watch and absorb information and put it together himself. Then he will come out with a statement such as "humans cannot fly because they are too heavy and gravity pulls them to the earth".
So I would go back and get an assessment of her social interaction and play skills. Why can't you get access to a SALT. They are the professionals that cover this area.
Look around at more suitable schools.
Find out about your education system.
Get in touch with national organisations and local support groups. Get clued up.
Start collecting written evidence and learning about the different aspects of her difficulties and how they affect her and then write to the responsible professional for them to tell you how they will meet that need your daughter has.
If, after some time, you are not making progress and are not happy with her progress in school, or are denied access to the school you think is appropriate because of their entry criteria or lack of places etc. Then get a solicitor involved.
I would also recommend you read the book I mentioned by Olga Bogdashina.
I took me over 2 years to get my son diagnosed (from 4 to 6 years old), and it took another 2 years on top of that (6-8) for all of the difficulties I recognised to be confirmed by professionals (in private reports), and for those needs to be supported in school. And I was fobbed off by doctors, health care workers, nursery etc from the age of 3+ because they all told me to wait and see how he develops and that any issues would be raised when he started school. But that meant he missed out on a years worth or professional input. It also meant he had to go to a mainstream primary school because the education system did not know that he had any special needs. That first school failed him terribly, and we are still playing catch up now. He still isn't reading or writing and is suspected of having dyslexia. Yet he has higher than average cognitive ability.
I am now continuing to gather all evidence because I don't know what the schooling options will be for him at 11+. At that age many children are forced back into mainstream only school due to lack of places. Again this is illegal, but the education authority still does it and only backtracks with those parents that threaten legal action.
I moved him to another school this September eventhough the educational authority threatened me and said they would put him in a mainstream only classroom with no supports (ie. they tried to scare me into keeping him where he was). So I moved him anyway and dared them not to support him or withdraw his placement as that would be illegal too under Disability Discrimination Law.
Why do we have to do this??? Don't we have enough on our plates anyway. It is very unfortunate that you find yourself in these confrontational situations, but you are the advocate for your daughter.
Your videos were very good. They are good evidence. Always check with professionals what they are assessing for and what they have found and what they recommend. For example, after three years I asked the SALT what the heading "social and behavioural assessments" meant because on their standardised forms, in three years, this heading always said "on this occasion we did not have the opportunity to assess him". She explained that this section was about Social Interaction and Play Skills. So I wrote a letter of complaint and asked why a child with a diagnosis of an autistic spectrum disorder, which as part of the diagnostic criteria has to have difficulties with both language and social interaction and play skills, had never been assessed or supported in those areas? I requested a SALT with experience of autistic spectrum disorders, and I insisted that they put together a social communication and interaction programme for him and that the school supported him during playtimes and breaktimes.
In the end I was hitting my head against a brick wall, so I called in private reports, got a solicitor and went to court and won. And my son is high functioning autistic. He too wants to play with children, and now is doing much better. But he needs supporting, and will probably always need supporting during his school years.
Don't be afraid to complain. Don't be afraid to ask professionals to explain themselves to you in writing and to justify what they have/haven't done.
Your daughter might benefit from a listening therapy. My son is doing one at the moment called Listening With the Whole Body. His Occupational Therapist has been trained in this. Again, I got that therapy because the private reports stated he had auditory processing and auditory memory problems, as well as auditory processing disorder - he also has sensory integration disorder. So I went to my GP and said that my son had a medically recognised disorder which the health service could not assess for or treat and that I had found a clinic in London UK that did a listening therapy that had proven clinical evidence that it caused improvements. My GP agreed to put in an application to fund this treatment. Lo and behold, a couple of months later I am approached by the community OT team who have been instructed by the health care trust to begain this therapy on him. No other child in his school gets this therapy. So, those that ask get. It would have been impossible for the hospital trust to justify turning my son down for this treatment because he has the medical condition. And it is not my son's fault that they don't have the facilities or specialists in our city to meet those needs.
Regarding potty training, my son was out of nappies at 3 years. Fortunately we haven't had many of the typical problems others have with that.
My son has always responded to other childrens attempts to play with him. But he didn't know how to initiate it himself. And frequently he could sustain play. When he was younger he wanted to re-enact things and other children would not comply and say the same words and do the same movements he required. He also found it hard to follow their spontaneous imaginative play. If the children were playing together and then got up and ran off to another part of the playground my son would not automatically get up and follow them, he would stay where he was. He frequently gets sidetracked whilst playing ie. something within the game will interest him and he will focus on that and become oblivious to what the other children are doing.
But at 8 he has made incredible progress. He is very observant and clever. He tends to watch and absorb information and put it together himself. Then he will come out with a statement such as "humans cannot fly because they are too heavy and gravity pulls them to the earth".
So I would go back and get an assessment of her social interaction and play skills. Why can't you get access to a SALT. They are the professionals that cover this area.
Look around at more suitable schools.
Find out about your education system.
Get in touch with national organisations and local support groups. Get clued up.
Start collecting written evidence and learning about the different aspects of her difficulties and how they affect her and then write to the responsible professional for them to tell you how they will meet that need your daughter has.
If, after some time, you are not making progress and are not happy with her progress in school, or are denied access to the school you think is appropriate because of their entry criteria or lack of places etc. Then get a solicitor involved.
I would also recommend you read the book I mentioned by Olga Bogdashina.
I took me over 2 years to get my son diagnosed (from 4 to 6 years old), and it took another 2 years on top of that (6-8) for all of the difficulties I recognised to be confirmed by professionals (in private reports), and for those needs to be supported in school. And I was fobbed off by doctors, health care workers, nursery etc from the age of 3+ because they all told me to wait and see how he develops and that any issues would be raised when he started school. But that meant he missed out on a years worth or professional input. It also meant he had to go to a mainstream primary school because the education system did not know that he had any special needs. That first school failed him terribly, and we are still playing catch up now. He still isn't reading or writing and is suspected of having dyslexia. Yet he has higher than average cognitive ability.
I am now continuing to gather all evidence because I don't know what the schooling options will be for him at 11+. At that age many children are forced back into mainstream only school due to lack of places. Again this is illegal, but the education authority still does it and only backtracks with those parents that threaten legal action.
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