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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
My sons language seemed to be developing and at around 2+ he was using one and two word combinations. When he was 3+ his older sister was bought a TV for her bedroom with an inbuilt video player. From the moment he saw his first video he would sit mezmorised by it, and after seeing it once or twice he would repeat the dialogue to himself and re-run the film in his head. He is 8 now and still does that. Some of his speech he has put together himself, but he struggles to find the correct words to express what he wants, and finds it easier sometimes to use a phrase or part of a dialogue from a film. So he kind of puts his verbal speech together like a verbal jigsaw puzzle. I can recognise from his speech what parts he has made up and what parts he has taken from somewhere else. He also speaks with an American accent, and has an unusual intonation and emphasises the wrong sylabel in words sometimes.
He also tends to talk at you. And it is very important to get her speech assessed because being able to talk is not an indication that everything is okay. She needs her expressive and receptive language, her auditory processing and auditory memory and working memory to be assessed.
Google delayed echolalia and autism to see if that is relevant
Also google Semantic Pragmatic Speech Disorder to see if that is relevant (if she has problems with pragmatics, then she probably has difficulties with semantics, and if she has both she probably has semantic pragmatic speech disorder). In the UK the different between a delay and a disorder is that with a delay there is the possibility that the child will learn and catch up. A disorder is for life. So, with the diagnosis of a speech disorder your child cannot be discharged from SALT.
It is also very common for children to behave differently in different environments. She does have some auditory sensitivities, and those seem to be around the acoustics associated with bathrooms, swimming pools etc.
I'm glad your've not impressed with the school. You need a school that has experience of teaching children on the spectrum. You need to be understood when you talk about your child and not be accused of things, or looked at like you are mad, or ignored.
If you get a multi disciplinary team assessment through health you can ask for a referal to a centre that has experience of diagnosing autistic spectrum disorders including aspergers. There might be a wait, but it would be worth it to get a proper insight.
In the meantime, find out about all your local schools and which ones have experience. Go and visit them and talk with them about entry criteria. If it is a mixed special needs and mainstream you maybe able to get a mainstream place without a diagnosis at this point.
Does your child ever appear deaf when you call her name, or does she appear not to feel touch sensations, etc. I found with my son that he doesn't misbehave in class, but he tends to shut down some of his sensory systems to cope with the classroom environment. Many people on the spectrum do this automatically as a way of reducing incoming stimulous. So, I too had to fight for his needs to be recognised and met because they couldn't see what his difficulties were. But in the classroom if he shuts down his hearing he cannot hear what the teacher is saying, so how can he follow her instructions etc.
To get support you have to tease out and identify every need because even with a diagnosis of aspergers or autistic spectrum disorder in the UK that doesn't automatically entitle you to extra support and services. And I found that the school professionals and health professionals did not want to do assessments because it costs them money to do them and anything they find means they have to find the staffing levels and money to meet that support.
Do you have an equivalent of the National Autistic Society in America? If so contact them and get some local information and advice.
There are solicitors who specialise in special needs law. I had to resort to one in the end. It cost me a new kitchen (which I had save up for!), but it has been more than worth it in the amount of money I know my son is receiving in therapies and supports in school.
But if you take that route, make sure you follow my instructions re independent professionals, and try to time it right so that you get the best benefit because you cannot afford to keep spending that amount of money.
Find out about your education system and your child's legal rights. It might be worth paying for a couple of hours advice from a specialist solicitor so that you know what you can do.
Don't believe what anyone in the school or health professionals tell you. It is hard to believe, but they do lie and they do threaten and they do refuse you access to supports your child has a right to.
Make sure that you put every request to anyone in writing, and always keep copies, and always get their response in writing.
He also tends to talk at you. And it is very important to get her speech assessed because being able to talk is not an indication that everything is okay. She needs her expressive and receptive language, her auditory processing and auditory memory and working memory to be assessed.
Google delayed echolalia and autism to see if that is relevant
Also google Semantic Pragmatic Speech Disorder to see if that is relevant (if she has problems with pragmatics, then she probably has difficulties with semantics, and if she has both she probably has semantic pragmatic speech disorder). In the UK the different between a delay and a disorder is that with a delay there is the possibility that the child will learn and catch up. A disorder is for life. So, with the diagnosis of a speech disorder your child cannot be discharged from SALT.
It is also very common for children to behave differently in different environments. She does have some auditory sensitivities, and those seem to be around the acoustics associated with bathrooms, swimming pools etc.
I'm glad your've not impressed with the school. You need a school that has experience of teaching children on the spectrum. You need to be understood when you talk about your child and not be accused of things, or looked at like you are mad, or ignored.
If you get a multi disciplinary team assessment through health you can ask for a referal to a centre that has experience of diagnosing autistic spectrum disorders including aspergers. There might be a wait, but it would be worth it to get a proper insight.
In the meantime, find out about all your local schools and which ones have experience. Go and visit them and talk with them about entry criteria. If it is a mixed special needs and mainstream you maybe able to get a mainstream place without a diagnosis at this point.
Does your child ever appear deaf when you call her name, or does she appear not to feel touch sensations, etc. I found with my son that he doesn't misbehave in class, but he tends to shut down some of his sensory systems to cope with the classroom environment. Many people on the spectrum do this automatically as a way of reducing incoming stimulous. So, I too had to fight for his needs to be recognised and met because they couldn't see what his difficulties were. But in the classroom if he shuts down his hearing he cannot hear what the teacher is saying, so how can he follow her instructions etc.
To get support you have to tease out and identify every need because even with a diagnosis of aspergers or autistic spectrum disorder in the UK that doesn't automatically entitle you to extra support and services. And I found that the school professionals and health professionals did not want to do assessments because it costs them money to do them and anything they find means they have to find the staffing levels and money to meet that support.
Do you have an equivalent of the National Autistic Society in America? If so contact them and get some local information and advice.
There are solicitors who specialise in special needs law. I had to resort to one in the end. It cost me a new kitchen (which I had save up for!), but it has been more than worth it in the amount of money I know my son is receiving in therapies and supports in school.
But if you take that route, make sure you follow my instructions re independent professionals, and try to time it right so that you get the best benefit because you cannot afford to keep spending that amount of money.
Find out about your education system and your child's legal rights. It might be worth paying for a couple of hours advice from a specialist solicitor so that you know what you can do.
Don't believe what anyone in the school or health professionals tell you. It is hard to believe, but they do lie and they do threaten and they do refuse you access to supports your child has a right to.
Make sure that you put every request to anyone in writing, and always keep copies, and always get their response in writing.
Thank you for all your wonderful advice!!! I should clarify, she has had no schooling thus far, no IEP yet. She was at school for 3 days for her evaluation in an integrated classroom, but has not even been enrolled. This was the pre-eligability meeting (we never even made it that far). She was also denied for early intervention at 18 months and just got taken on (based on clinical judgement) at 34 months (so they will drop us too in 2 weeks when she turns 3). She is diagnosed with PDD-NOS but bordering Aspergers (highest functioning possible just missing Neurotypical). The school stated that she definitely has sensory problems when it comes to the videos, but in real life in the classroom, they didn't see the behaviors. She tolerated the other children screaming, music, noise, etc. She followed the rules, was a model student. They said she could be acting differently in the classroom versus at home and in the world because she knows the reaction her parents will give her (which is a load of **** in my belief). They said that while she made no attempt to initiate social interactions, she responded to others' attempts to make them with her. They wrote in their report that my DD stated "Hi. My name is Jennifer." to another child which I find very hard to beleive as neither I nor my husband have ever heard her say this to another child before. They did say that she preferred to be around the teacher versus the other children (which I could have told them...she prefers adults). Jen wants to play and interact, she just doesn't know how and will stand there shyly and stick out her tongue and just stare at the child. Very odd interactions when she does attempt but would rather just be next to others, but not interacting except with adults...she is wonderful with adults). Not sure if it is because she can tell adults a story and they will respond as she expects. I guess now that the school is saying "it is basically the parents' leading the behaviors", it is hard for me to say she is really experienceing sensory info this way, or is she just playing games with us to get a response? When we ask her if she likes soap, she says Yes but the bathroom is too scary. I ask if it is the noise, and she says that it is too noisy. She also says she is scared of the pipes as a couple months ago, we had a pipe leak and needed the ceiling fixed from the leak. Bathing was bad before this incident, but this made it much worse. She also states "the water is too hot" but it is luke warm if that. She prefers an ice bath and is obscessed with ice and cold items. It is funny that you said that you experience some of these things, because I also have some sensory issues. I can't touch boxes or rub my fingers on certain textures (feels like rubbing nails on a chalkboard). I also lived on soup as a child, and this is the only thing my child will eat and pasta. Like you, I am also neurotypical. When your son was Jennie's age, how was his eating, sleeping? Did he talk well? My Jen's speech is wonderful, but it is more like she talks at us as a story, but can't do the give and take part of speech. She is very literal. Her doc's eval stated that she has pragmatic speech delays, social delays, anxieties.
How you said that your son would vomit from the smallest thing, I completely relate. It could be us telling her that we are going to the park, and she was shake and say, "No, I want to stay home, I'm tired." Then shake and vomit. I told the school this and they (the principal during the eligablity mtg) turned it around on me stating that "well, she got her way right? It's behavioral." However, she was really scared and if I took her anyways with these anxieties, would I not be doingher even more psychological harm???
They don't have SALT here. Just EI and Preschool. I have her in swim classes to be around others, but she spends it clung to me and scared of every noise in the pool area. The next step is to request an independent evaluation, but with the way this school treated me during this mtg, I really don't want my daughter attending there. I am going on Mon to see if she will qualify for another school (Head Start)...hopefully this will be better, but they want the child potty trained, and that has been a whole other issue which is not going too well. Thank you for all your info...
How you said that your son would vomit from the smallest thing, I completely relate. It could be us telling her that we are going to the park, and she was shake and say, "No, I want to stay home, I'm tired." Then shake and vomit. I told the school this and they (the principal during the eligablity mtg) turned it around on me stating that "well, she got her way right? It's behavioral." However, she was really scared and if I took her anyways with these anxieties, would I not be doingher even more psychological harm???
They don't have SALT here. Just EI and Preschool. I have her in swim classes to be around others, but she spends it clung to me and scared of every noise in the pool area. The next step is to request an independent evaluation, but with the way this school treated me during this mtg, I really don't want my daughter attending there. I am going on Mon to see if she will qualify for another school (Head Start)...hopefully this will be better, but they want the child potty trained, and that has been a whole other issue which is not going too well. Thank you for all your info...
There are big disagreements around inclusion. Some for, and some against. If your daughter is on the spectrum that means that she DOESN'T learn from other children or family members. That is what autism is. Having said that, these children do have to be able to function in a world where most of the people are neuro typical. And at primary level children are much more forgiving.
You say that she isn't playing with other children, and that is what it showed on the video you posted on you tube. She is either unaware of other children, or does not know how to initiate and sustain play. No matter how long she is with other children she will not learn these skills simply by being in close proximity to other children.
I am not anti inclusion. My son is in a school that is a mixture of those on the spectrum and mainstream children. The best school I have ever been to was aspergers and high functioning autism only, but the chances of me getting my son in there are practically nil.
Other conditions or disorders do well in mainstream because those children learn in the same way even though they may be delayed etc.
Children on the spectrum are totally different and there is no evidence that being in a mainstream environment is of any benefit to them. Infact as they get older and are self aware, they recognise that they are different and have difficulties but they don't know 'what' is different about them or 'how' they can bridge the gap.
As an adult, I know that my son will not be mixing with other mainstream adults because he isn't interested or motivated by the same things and he doesn't have the social skills or language skills for them to accept him even if he wanted to be part of that group. He won't be going to pubs and clubs because of the sensory issues involved with that.
On a comparative level with other children on the spectrum your daughter may be doing well. But her difficulties are not minor and the gap between her abilities and her peers will widen. But, even if you consider only the social side of things, the school should be meeting that need and not fobbing you off. It is the responsibility of the SALT and the school to meet those needs. If you don't fight for it, it won't happen. And a year down the line she will be showing no improvement in those areas and you will be a year behind in therapies.
Don't play the waiting game, that is what they want, it doesn't cost them money. Get the supports and provision in place. If she does develop and gain these skills and doesn't need the support and therapies anymore it can be withdrawn.
If they don't support her during playtime, and she is by herself and not joining in, then in what way is she being included?
You say that she isn't playing with other children, and that is what it showed on the video you posted on you tube. She is either unaware of other children, or does not know how to initiate and sustain play. No matter how long she is with other children she will not learn these skills simply by being in close proximity to other children.
I am not anti inclusion. My son is in a school that is a mixture of those on the spectrum and mainstream children. The best school I have ever been to was aspergers and high functioning autism only, but the chances of me getting my son in there are practically nil.
Other conditions or disorders do well in mainstream because those children learn in the same way even though they may be delayed etc.
Children on the spectrum are totally different and there is no evidence that being in a mainstream environment is of any benefit to them. Infact as they get older and are self aware, they recognise that they are different and have difficulties but they don't know 'what' is different about them or 'how' they can bridge the gap.
As an adult, I know that my son will not be mixing with other mainstream adults because he isn't interested or motivated by the same things and he doesn't have the social skills or language skills for them to accept him even if he wanted to be part of that group. He won't be going to pubs and clubs because of the sensory issues involved with that.
On a comparative level with other children on the spectrum your daughter may be doing well. But her difficulties are not minor and the gap between her abilities and her peers will widen. But, even if you consider only the social side of things, the school should be meeting that need and not fobbing you off. It is the responsibility of the SALT and the school to meet those needs. If you don't fight for it, it won't happen. And a year down the line she will be showing no improvement in those areas and you will be a year behind in therapies.
Don't play the waiting game, that is what they want, it doesn't cost them money. Get the supports and provision in place. If she does develop and gain these skills and doesn't need the support and therapies anymore it can be withdrawn.
If they don't support her during playtime, and she is by herself and not joining in, then in what way is she being included?
Sensory issues are different to OCD behaviour. In OCD the person/child feels compelled to do certain rituals because they feel that something bad will happen if they don't do them. With sensory issues we actually receive and translate the incoming sensory information differently. So a child insisting on certain clothes (or tags removed) (or long sleeves/trousers) (or short sleeves/short trousers) (or must always wear shoes and socks) or (must never wear shores and socks) is not OCD if they want (or don't want) those clothes because the fabrics are tolerable (or intolerable) to them.
My son had some similar behaviours at around her age. He used to vomit like a reflex action when he got anxious or upset. It could happen in seconds. It could be around me turning off the TV, or saying we were leaving the house, or telling him no. It did stop just before he started school. But up until then we had to try to distract him as soon as he started to gag, which sometimes included singing or clapping or dancing around!. Mostly we just cleaned up the sick and changed him. It happened that fast.
He very rarely flaps, but he did used to spin and run or walk round in circles. He used to like ripping up newspaper. He didn't line things up. He did play with parts of things. He was okay with changes in routine. But he needed his expectations to be met, and if something was not as he expected it to be he would get upset and vomit or throw a tantrum.
He's now 8 and much much better. Especially since I moved him to a school that has experience and expertise in autistic spectrum disorders. I also got private reports and went to an Educational Tribunal and got every provision we have proved he needed.
What you need are reports that actually give written evidence of what your daughter's needs are and what is recommended against those needs. I found it impossible to get anyone in the education or health service willing to carry out any assessments. I can only put that down to funding and the fact that the more needs they find the more money they have to allocate to your child.
But there are eductional laws, and you would be wise to find out what any school is required to do by law to meet a child's needs.
The school seem to be just looking for bad behaviour. That isn't always the case. I know of autistic children who just follow the rules at school (because they love the routine), they get annoyed at other children making a noise or not paying attention. They want to just sit and learn. Yes they are model pupils, but it is because how autism affects them.
My son isn't like that, he hates school, because he does find it a struggle.
Has your daughter been assessed by a Speech and Language Therapist? She sounded quite verbal on the tape which is good. However is her receptive speech as good as her expressive speech? Is she a concrete literal thinker. Can she hold two way conversations or does she give an unrelated answer to questions that are directed to her? Does she have language processing delays or difficulties following verbal instructions?
If she has a diagnosis, and if you are happy with that ie. PDD NOS and not Autistic Spectrum Disorder. Then you need to know exactly what her speech and language skills are as well as her social skills and play skills. It maybe that she is okay academically in school, but does not know how to interact. If that is the case the SALT needs to work on that area. However, she may find academic stuff hard because as they get older they have to use learnt information and manipulate it to apply the concepts into different situations. Many children struggle with that. So she might do okay in the infant years, but start to struggle at around age 7+. Can she read and write and understand numbers? Has an educational pscyhologist assessed her cognitive ability and her emotional and anxiety regulation. Can she recognise emotions in others. Does she have one to one correspondence with numbers. Is she learning the alphabet and phonics. Is she motivated in the class.
Sometimes children appear to cope in school, but bring all the anxiety/stress and frustration out at home.
If it was the other way round, ie. problems in school and perfect at home, how would school like you to refuse anything they suggested because she was okay in the home environment?
If school are refusing support, do you have reports made by the SALT and Educational Psychologist that names her needs and recommends how she should be supported. Can you go back to her paediatrician and ask for a referal through health to a multi disciplinary team assessment?
You can also get private reports done. If you do they are much more thorough, but they cost about £1500 per report. If you do go down that route you want professionals who are independent and who don't work for the health or education services. You want them to have experience of autistic spectrum disorders, and also experience of being called as expert witnesses at Educational Tribunals. An independent professional will write a report that states what your child's needs are (irrespective of what is available in school). Once you have written evidence of that need, by law (in the UK, at least), the school has to provide that level of support and if they don't have it the local educational authority has to fund that extra provision.
My son had some similar behaviours at around her age. He used to vomit like a reflex action when he got anxious or upset. It could happen in seconds. It could be around me turning off the TV, or saying we were leaving the house, or telling him no. It did stop just before he started school. But up until then we had to try to distract him as soon as he started to gag, which sometimes included singing or clapping or dancing around!. Mostly we just cleaned up the sick and changed him. It happened that fast.
He very rarely flaps, but he did used to spin and run or walk round in circles. He used to like ripping up newspaper. He didn't line things up. He did play with parts of things. He was okay with changes in routine. But he needed his expectations to be met, and if something was not as he expected it to be he would get upset and vomit or throw a tantrum.
He's now 8 and much much better. Especially since I moved him to a school that has experience and expertise in autistic spectrum disorders. I also got private reports and went to an Educational Tribunal and got every provision we have proved he needed.
What you need are reports that actually give written evidence of what your daughter's needs are and what is recommended against those needs. I found it impossible to get anyone in the education or health service willing to carry out any assessments. I can only put that down to funding and the fact that the more needs they find the more money they have to allocate to your child.
But there are eductional laws, and you would be wise to find out what any school is required to do by law to meet a child's needs.
The school seem to be just looking for bad behaviour. That isn't always the case. I know of autistic children who just follow the rules at school (because they love the routine), they get annoyed at other children making a noise or not paying attention. They want to just sit and learn. Yes they are model pupils, but it is because how autism affects them.
My son isn't like that, he hates school, because he does find it a struggle.
Has your daughter been assessed by a Speech and Language Therapist? She sounded quite verbal on the tape which is good. However is her receptive speech as good as her expressive speech? Is she a concrete literal thinker. Can she hold two way conversations or does she give an unrelated answer to questions that are directed to her? Does she have language processing delays or difficulties following verbal instructions?
If she has a diagnosis, and if you are happy with that ie. PDD NOS and not Autistic Spectrum Disorder. Then you need to know exactly what her speech and language skills are as well as her social skills and play skills. It maybe that she is okay academically in school, but does not know how to interact. If that is the case the SALT needs to work on that area. However, she may find academic stuff hard because as they get older they have to use learnt information and manipulate it to apply the concepts into different situations. Many children struggle with that. So she might do okay in the infant years, but start to struggle at around age 7+. Can she read and write and understand numbers? Has an educational pscyhologist assessed her cognitive ability and her emotional and anxiety regulation. Can she recognise emotions in others. Does she have one to one correspondence with numbers. Is she learning the alphabet and phonics. Is she motivated in the class.
Sometimes children appear to cope in school, but bring all the anxiety/stress and frustration out at home.
If it was the other way round, ie. problems in school and perfect at home, how would school like you to refuse anything they suggested because she was okay in the home environment?
If school are refusing support, do you have reports made by the SALT and Educational Psychologist that names her needs and recommends how she should be supported. Can you go back to her paediatrician and ask for a referal through health to a multi disciplinary team assessment?
You can also get private reports done. If you do they are much more thorough, but they cost about £1500 per report. If you do go down that route you want professionals who are independent and who don't work for the health or education services. You want them to have experience of autistic spectrum disorders, and also experience of being called as expert witnesses at Educational Tribunals. An independent professional will write a report that states what your child's needs are (irrespective of what is available in school). Once you have written evidence of that need, by law (in the UK, at least), the school has to provide that level of support and if they don't have it the local educational authority has to fund that extra provision.
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