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

[Rachel Thompson, Ph.D., BCBA]

I would definitely recommend that you seek assistance for your daughter's vomiting and feeding difficulties. Many large hospitals in urban areas have pediatric feeding programs that offer assistance. As you noted, many feeding issues begin with medical problems (e.g., reflux) that make it uncomfortable for children to eat. Feeding is then complicated by behavioral issues in that the child is motivated to avoid eating and may learn to escape meals and other unpleasant events through tantrums and other forms of refusal. Comprehensive medical and behavioral interventions are highly successful in these cases. It may be good news that the school feels that your child is doing well. If there are signs that this is not true, you should continue to advocate for the services that your child needs. If it appears that she is doing well at school, it would be useful to get services for the problems that you are seeing at home and to figure out what may be promoting positive behavior at school. It is not uncommon for children to behavior very differently at home and school. This does not mean that teachers or caregivers are to blame for the behavioral difficulties. Good communication can increase the likelihood that both parties understand what is working and not working so that the child is best served.

[Sally44]

I am the mother of an 8 year old boy on the autistic spectrum.  He is high functioning and goes to a school that is a mixture of those on the spectrum and mainstream children.  He went to a mainstream only school to begin with and he wasn't diagnosed until he was 6, although I had raised a number of concerns from about age 3.
I've also gone over onto YouTube and have looked at your videos.
In my opinion she is showing autistic characteristics and also alot of sensory issues.
From your post I presume she has a diagnosis of PDD NOS?  What part of the diagnostic criteria for an autistic spectrum disorder did she fail on?
I am in the UK, and the definition of 'education' in the UK is not limited to just reading and writing.  It includes social interaction and play skills, life skills, emotional regulation and anxiety regulation etc.  
So, in short, I disagree with the school.
Is she in a mainstream school?
Just because a child is not showing inappropriate or disruptive behaviours, does not mean they don't have needs.  If your child cannot play with other children she has a need in that area that should be met with a programme from a speech and language therapist.  She should be going to a Social Skills Group, she should have adult support during playtimes and dinnertimes and she should be being taught how to initiate social interaction (as a starter) and play and the adult on the playground should be helping her to use the skills she has learnt on how to initiate from the SALT.  Those targets and how they will be met should be in her IEP, and it should be monitored and recorded how she is doing with this skills.  And that is just one aspect.
She is showing alot of sensory behaviour.  Covering her ears in the bathroom, making sure it doesn't involve a shower (many have tactile problems and showers may actually hurt them).  The bathroom has a different acoustics.  She vomits easily.  She flaps and spins.  She has a body movement she does rhythmically using her upper torso.  She should be assessed by an Occupational Therapist and a programme put into place on how to help her with these issues and what kind of environmental adaptation she needs to cope in school.  It maybe that in school she has less problems.  But she needs to be assessed for that to be certain and to ascertain what it is in the home or school environment that she likes or cannot cope with.
I would also recommend a book by a woman called Olga Bogdashina called Sensory and Perceptual Differences in Autism and Aspergers.  There is a caregivers questionnaire at the back of it that you can complete to get a sensory profile of your child.
As children typically find visual information helps them understand, you could make up a daily timetable for home which shows in picture form what she is going to do on that day.  As she is verbal start to ask her about what is upsetting her.  For example, in the bathroom, ask her "is the noise from the water hurting your ears", or "does it hurt your skins when you have a shower".  Whatever she tries to avoid ask her a direct question, not an open ended one.  Don't ask her 'why', she's too young and may not even know why herself.  She appears not to like soap, ask her "does the smell of the soap bother you."  "does the soap make your skin feel itchy". etc.  You might get some surprising answers.  But just believe whatever she says is a true experience for her.  I have sensory issues myself, and I am not on the spectrum.  But I have auditory processing difficulties, CAPD, touch oversensitivities (If someone touches me I can still feel it for minutes afterwards, some touch hurts), I cannot wear tags in clothes or wear man made fibres, I cannot bear certain smells to the extent that I will vomit or have to leave the building or bus.  

[Sally44]

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.  

[tejodouro]

Hi -
You should be happy that your child is doing so well.  The best for the child is to be integraded with other children without disabilities. She will learn from them.  I would just work closely with the teacher and make sure that all is going smoothly.  If not, you can always call an IEP meeting.  Maybe your daughter is out growing her issues.  There are children that in Pre- School show symptoms on the spectrum but will outgrow them.  Just work closely with the school and make sure that you understand how your child is performing.  How is she doing in Pre-school? does she behave? does she talk to other children?  I think that it is always in the best interest of the child with minor disabilites to be fully integrated in a regular classroom.  Later if she is having social issues you can always request that the school give her a social skills class. Good luck.

[Sally44]

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?

[lisawalker22]

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...

[Sally44]

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.

[Sally44]

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.

[Sally44]

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.

[Sally44]

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.

[lisawalker22]

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.  

[Sally44]

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.

[Sally44]

I have posted daughter instead of son - excuse me, it's still early in the UK!!

[SueNYC]

I am sorry you are having such a hard time.  Usually, in the States, it is easier on the pre-school level.   Honestly, in NYC I knew parents that faked a disabled cild to get free pre-school.  I really don't understand how you got all of these doctor reports and still did not qualify for any services.  Perhaps you need an advocate - because it seems like this school isn't telling you all your rights.  You need to go to your state's websites and find out who/what your rights are.   My son is borderline too - and honestly at that age I didn't get anything for him because he was muddling through.  There is a big wait and see thing going on.  We took care of it privately (which is pretty expensive) until his problems interfered with his school work.  The fact that your child is 3 and is still in diapers already indicates that they are a bit lagging.  Kudos for finding a school that allows it.  

If you qualify for Head Start then you probably can find an advocate who will help you on a sliding scale.  Every state has to provide a public advocate service and they are less expensive than the private ones.  Also, some of the private schools work with advocates who charge a substantially lower fee.  

My daughters had a kid in their preschool who used to upchuck any real food every time she ate - but magically could keep down potato chips and cheese doodles.  The teachers viewed it as a control issue to get more chips - so sometimes teachers read their own feelings into it.  Just remember you are dealing with a professon that has the lowest SAT scores of any licensed group.  Furthemore teachers who have scored elementary education degrees also have the lowest critical thinking skills of any college major.  This knowledge really helped us deal with them on a psychological level - all of a sudden the professional was no longer very insightful or intimidating.  

Be happy that your child is functioning in school.  Sam buried many a preschool director/teacher.  He then grew up to bury a principal or two.  You should be happy no one is politely asking you to pack up your urchin (and I mean public school) and handing you a letter telling you to go find any private school and they will happily foot the bill - just get him the hell out of their sight.  
                                          

[malinda1998]

Hi, I just watched all of your videos on youtube. She is precious. Bless your heart, I know this is rough. Alot looked very similar to my son. He is autistic. Also alot of sensory. I have never even heard or seen anyone else vomit at mealtime, like he does, until I watched your little girl. She looks as though she does have sensory issues. You really need to get help and not wait. She seems very bright with her language, but alot of sensory can be very frightening to them. Hang in there, it does get better. We actually took our boy to the feeding encouragement program at Kluge Childrens rehabilitaion center in va. Of course we live in va. But I encourage you to look up a feeding program for sensory issues on the web in your area. He was doing great, We actually taught him for years if he gagged go ahead and spit his food out before he vomited. Well he did this at school and low and behold one of his aides told him to not do that uit was disgusting. So now he has regressed and we are working with another feeding specialist. Dont you just love the school systems. All those years of hard work with him, BAM down the tube. Oh and I very much expressed how I felt to the school, but do you think they give a rats @#$, sorry I tend to still get a little bent out of shape over that one, dont give up .I personally know its hard, but you will get there.

[lisawalker22]

Hi there,
    I read your post and I really apreciate the info.  I have a meeting scheduled with the school for this upcoming week and my very vocal and persuasive mother in law will be going with me this time (lol...breaking out the MIL).  I am definitely going to look up feeding programs for sensory as you suggested...the feeding team she has right now is more medically focused...she is having an upper GI next month to monitor damage to her esophagus.  Poor kid...  Thank you for suggesting the spitting the food out before she gaggs...we just started doing that and soooooo much better!  If it hits the back of her gag reflex though, there is no stopping it...but for the initial textures that she feels when she gets the first bite, spitting has helped a lot!  Any suggestions on potty traning issues?  We are no where near potty training and she does it all over the house!  She doesn't understand not to go in her underwear.  I have a potty in the living room as she is petrified of the bathroom.  We keep prompting her to go every 5-10 mins and she says she doesn't have to...but she will go every 10 mins if you sit her on the potty each time she does go.  Also, she just started becomming hyperactive and uncontrollable (partly regular 3 year old) and she began hitting people this month which she has never done before.

[Sally44]

I also taught my son to try food and that it was okay to spit it on a paper napkin if he thought he was going to vomit.  This also worked for us.  Thankfully he then grew out of this at about the same time he started school.  Otherwise I am sure he would have got told off for doing that in school.  But it is a sensory thing, and also a reflex action.  Then it also gets associated with anxiety etc.  So, by telling him I wanted him to taste, but that it was okay to get it out his mouth fast, he became much more able to try stuff.  We started with just sniffing and touching food with the tip of his tongue, then just putting it in his mouth etc.  There are still certain food types and textures that he cannot bear, but his overall food intake is very good and is from a wide range of food.  He now even eats cabbage and brussels!  But he still cannot tolerate baked beans, peas, sweetcorn etc.
And I also worked on teaching him how to swallow vitamin tablets, because I knew that we would have huge difficulties with medicine.  He had liquid antibiotics once and just vomited it back up every single time.  I spoke with the doctor about it and he was just not understanding at all and told me 'you have to get it down him'.  Well, I did eventually find a way.  I mixed it in with hot chocolate milk and he drank it.  But after that we worked on tablets, and he can now swallow tablets okay.  So if he ever needs any kind of medication in the future I know he should be able to manage it.
So it is possible.  Just lots of encouragement, small steps and a get out clause (ie. spit it out) to reduce anxiety.

[Sally44]

A number of other things I have noticed about my son regarding food, which might be relevant is:-
(a) anxiety over different labels, where it was in the supermarket shelf (if it moved place), if the packaging or name has been changed.
(b) when on holiday he will eat food he will not touch at home.  And some familar food he appears not to recognise.  Quite bizzare really.  At home he likes fish fingers and likes blackcurrent juice to drink.  On one holiday he really didn't appear to know what this food was and was starting to get quite anxious about it.  I can only assume he in some way recognises the food by the environment it is in and not just by the look and smell of it.
The above examples are things that happened when he was younger ie. 4-6 years old.  I haven't had anything similar since.  Apart from a change in food naming causing an absolute meltdown in the middle of a cafe.  We went to order chicken nuggets and were told they were now called chicken chunks.  He didn't like that!  So he said okay i'll have fish fingers.  And we were then told they aren't called fish fingers anymore they are called fish nuggets.  Well all hell broke loose with him kicking and screaming on the floor.
But I think that all of the above is down to sensory, perceptual and language difficulties.

[lisawalker22]

LMAO...this is the best advice ever!  Thank you to Malinda1998 and Sally44 for teaching us that spitting is better than swallowing!!!!  So funny...but it has worked amazing.  My DD had easter dinner today and put a texture in her mouth that didn't agree (stuffing) and she was able to spit it out and not vomit.  The rest of the family was appauled that we are teaching her to spit into her napkin, but they will get over it if it means no vomit at the table...lol...  AMAZING ADVICE!!!!!  Any other inside tips on this gag reflex and stopping it?  Really happy!!!!!!!!

[Sally44]

it is just important to make sure everyone (at home and nursery/school is aware of your daughter using this strategy and that they MUST NOT say anything negative to her about it.  For most people it is a bit disconcerting to see a child frequently spitting out food.  But she can be taught to do it quite discreetly as she gets older and the important thing is that she becomes more confident in 'trying' textures and feeling 'confident' that she can remove them without gagging or vomiting.  You may well find that over time (years), her variety of food consumption will broaden.  Today my son ate some bread with sesame seeds on.  That is a first.  Usually bread cannot have any other texture/seed or grain in it or on it.
You can also encourage her to touch, squash and sniff food without any pressure to eat it or even put it in her mouth.  But that is usually for even more severe cases where childrens variety of food is severely limited to just a couple of items.

[Sally44]

The only other thing I can think of is that smell is closely tied in with taste.  Infact when you have no sense of smell you have no sense of taste.  Therefore it maybe that your daughter has an oversensitive sense of smell.  So you can help reduce the overall sensory load by reducing any perfum and chemical cleaners in the house.  Try to use natural stuff.  It usually works better and is cheaper eg. vinegar and lemon juice.  No air freshener sprays etc.  Let her smell products and tell you if she likes them eg. soap and shampoo.  If there are any she cannot tolerate then get rid of them.
My son used to gag and run away if he smelt mushy peas.  Once we were in a restaurant and someone near us had them on their plate and my son kept trying to escape outside.  

[malinda1998]

Hi,
   So glad this is working. I know it ia a slow process, but once they understand that YOU understand what they are going through it seems to slowly get better. As far as what other people think, THEY CANGET OVER IT!! They have NO CLUE what you or your child has been ,is, and will go through!! my sons diet has fluctuated back and forth. Its definitely alot more than what it used to be, but he can communicate to me what he wants and now I try to let him make those choices. There are times I say oh please just try it. He refuses ex: broccoli, but at school his peers talk him into it then he tries it and loves it!! But there are still times of gagging and vomiting. You are definitely right do go the medical way first,(tests for reflux and et.), but if they say shes fine and dismisses it dont stop get her the help she needs while she is young. You will be sooo glad you did. My son is 10 and still has issues, somedays more than others, but I have seen him make incredible strides over the years and I fully believe with everything in me if we did not seek out so much help for him and fight every step of the way, he would have never come this far. Thanks God for the push and willpower he put in me for my childs sake. He is truly amazing. I could not imagine my life without him. Also I wanted to mention my son has to have plenty to drink while he is eating. It just helps him to wash it down. I have noticed if it gets stuck in his teeth he will gag. Although we constantly have to say thats enough to drink, get a bite, because thet will definitely substitute drink for food. As far as potty training, I tried probably 5 different times over the course of 2 to 3 YEARS. I thought okay this is not going to happen and it didnt until he was 5 yrs, old. Then I tried again and bam this time he got it and took off with it. Has done wonderful ever since. Please dont listen to everyone "Oh she should be pottied by now" Please people mind your own business. She WILL get it (only in her time ), no one elses.Good luck and Im glad the spitting is helping. My boy had to eat ALL pureed food and baby food until he was 4 yrs. old. Now he eats macaroni and cheese, spagetti, omelets, hamburgers, chicken nuggets, loves carrots and green beans, cut up apples (no peelings of course), watermelon, used to ve alot more until the bread ended. Take care.