Advise please :)

[mylittlemonster]

My little girl is almost 6 shes in year one at school and is adopted. Birth mother drank whilst pregnant so I have presumed this is the route cause of any issues with her a few friends have suggested our problems could be more on the autistic spectrum but im not convinced although i know for sure there is something.

 

As a baby she was late with motor skills not majorly just slightly so crawled 4 days before her 1st birthday sat up when she was almost 10 months.

 

She had a fab routine when she came to us at 7 months, slept well, was an amazing eater just whingy and pretty demanding. She would go to anyone at all who offered to hold her.

 

Around the age of 1 and half to 2 she became obsessed with food like it was going to be taken off her, i must point out she was in care from being a newbaby so never deprived of food, I would limit her to what she should have yet she would use other people to get unbelievable amounts because 'they felt sorry for her' she would cry and cry or moan until she got her way. She went out with family one time who preceeded to tell me she had eaten chicken and rice, 7 bags of crisps!!!!!!!! chocolate, mcdonalds, it was ridiculous. Have to point out here she is a petite little thing only weighs 2 and half stone even now

 

The eating carried, I could feed her a meal before us so that we could sit down when she was in bed or something but if she saw us eat whether she had eaten or not she would break down in flood of tears.

 

She still pretty bad but has learnt to control it a bit she just goes on and on how much she likes something that someone else has got to the point they hear her and give her some.

 

When she went to nursery she settled well had a set routine every morning that she had to have the buggies initially it was a problem in school as she would point blank refuse and get in a state if it was taken away, nursery also said she was very possessive especially of this other child in the class and noone was allowed to play with him other than my daughter or she would get upset, they also said she needed a lot of reassurance when there was something new going on.

 

As time went on she developed an issue with clothes, she was about 2 or 3 when it first started but it became a problem when she was in nursery, she would wake up and needed to know what she was having on after nursery, what she was having on for nursery, what she was wearing at bedtime. She would frequently strip off her pjs and swap them and hide the others because she wasnt happy in the ones she had, they didnt feel right, she wouldnt wear dresses and they had to be right or it would cause kick offs. I spoke to the health visitor who also spoke to nursery and she decided perhaps it could be a bit of ocd but not anything else and that a parenting course might help me which I went on.

 

When she went in to reception, the teacher said she was behind with her work, she shouted out, didnt like to wait her turn but ifd they had problems at the end of reception they would tell me, they never did so i assumed it was all ok.

 

At home though things were getting harder and harder, she is lovely but shes loud, always on the go, cries a lot, shouts a lot, talks unbelievably a lot but not to us just out loud to her class of children. She plays the same game all the time, shes either a teacher or if her sister plays with her shes a boy in a wheelchair, shes obsessed with a little boy at her school whos in a wheelchair, she spent pretty much the whole of last year draggin herself around the floor like he did when he was out of his chair. She uses her bike, skateboard or car to pretend shes in a chair

 

When she had gone in to yr 1 we mentioned to the classroom assistant that we were concerned about her and she said that theres nothing wrong with her shes just stubborn.

 

At the first parents evening her teacher shocked me when I found out they were infact having problems in school as well as us at home, he said shes very behind, they cant get her to work, she switches off, doesnt concentrate, fidgets, messes about, cant work with numbers above 5, struggles with reading, never gets her spellings. Shes below level 1 in national curriculum, on the first stage of reading books still, she doesnt join in class discussion. I actually felt relieved that he had said it as i was beginning to think it was just us.

 

She does play with other children but shes bossy and falls out with people constantly, she never gets invited out for tea or anything like most of the girls do now in her class.

 

Her sensory issues have gone really bad, she cant have bumps in her socks, the ankle area of her pants have to sit right, her shoes have to be so tight they practially stop her blood, she will have me undo them over and over till they feel exactly the same on both sides, her waist bands have to be tight and not move, her neck line on her top has to feel right, they cant itch, labels often have to be cut out, she has major issues with gloves and hats, her bobble has to touch her head in the right place. She still has no stranger fear and would go off with anyone at all

 

We phoned the school nurse before christmas and left a message but she never got back to us, so we went to see the doctor but it was hard to say things because we had her there for something else so i knew he hadnt listened and the referral to camhs was dismissed as an innapropriate referral and we told to go on a parenting course!!!!!!!!! Again!

 

I spoke to camhs but they have told me i need to get her referred again, the headteacher in school said he has observed her and feels there is something with her but he cant say want, he doesnt feel its autism. He said the senco would get round to seeing her but he couldnt say when and that yes she was very behind but she was when she went to them. Verbally she sounds like shes been here before. Anyway school have now decided to just see how she goes before getting the senco involved so basically its like hitting a brick wall everywhere we turn.

 

Sorry for the long moany post just wondered as its been mentioned a couple of times what you thoughts were

Edited February 12, 2012 by mylittlemonster

[smileyK]

Do you know how much birth mother drank??? Lot? As have you heard of foetal alcohol syndrome? This could be possibilty as very close similar to way presents like ASD and is spectrum disorder and ASD can present alongside too I would research look into this condition further!

[mylittlemonster]

Thank you yes we have looked in to this condition and she does fit things from many different areas, she doesnt have the facial features of this condition but does have other signs just wanted to get a view really as to whether it looked liked this condition as well as it keeps popping up from people

[smileyK]

I don't know if you can get official diagnosis any facial features that different could it be that facial features differences are there but because you with her all time not noticing them or because it mild form of FASD? Who have made observation of that she may have FASD? It is professional? I would get checked out by paedtrician through GP refferal get it ruled out then can look closer at other likely possibilities?! I read about FASD information that it more common in fostered / adopted children who's birth mother had alcohol problem drank while pregnant! And what you said about low weight etc I wouldn't rule out anything just yet especially FASD until been seen by medical profession and had closer look at bigger signs / picture medical background/ history birth history/background!

[justine1]

Hi

 

I would say if her current GP won't refer you go see someone who will,keep pushing. Once you have been seen by CAMHS and they say she is "fine" then fair enough but they should not refuse to make such a referral.

 

The clothes issues sound like my 6yr old Dan,he has got better with age but was terrible with socks especially. Even if she has not got ASD she may have sensory issues on its own,which can cause problems if its not just touch,she may be sensitive to sounds and sights which is why she may be distracted in school.

 

Also to say my 8 yr old Sam got his diagnosis aged 6 1/2 due to the fact school was becoming more challenging therefore the behaviour became more challenging. He did clearly have "problems" since age 2 but nobody really picked up on it,there was also some excuse..."he is a middle child" "he is just different to his brothers(personality)" etc.

Things got to the point at school where he was excluded 4 times and on a reduced timetable (9-12) with a 1:1 support. He now has a statement and attends an ASD unit attached to mainstream he is doing brilliantly.

 

If she is falling behind she should have IEP's (targets to reach in school) which should be updated at least every 6months. School should place her on school action and if things do not improve school action plus,at which time you could then apply for a statement to get her more support. Speak to the school,ask who the SENCO is and make a meeting to discuss these options,get them to write a letter detailing what has been discussed at the meeting and what will be done,if nothing then why. Just make sure you have it in writing.

 

Also keep a diary of past behaviours and anything new you observe between now and the CAMHS appt,just keep pushing.

[oxgirl]

Has Attachment Disorder ever been discussed with you? If she was put into care at a very early age this could be an issue worth looking into. I do know that AD can present in very similar ways to Asperger's and that a precise diagnosis is sometimes hard to come to.

Hope that helps.

 

~ Mel ~

[butterfly73]

I would try and let the sensory issues assesed asap.. and get tips (to give certain stimuly/avoid or temper others) from that specialized therapist!

That is more important than the eventual lable that might fit the behaviour!

[Sally44]

From some of the experiences I have heard of, I would not even raise the issue of "Attachment Disorder" until everything else has been ruled out. That is because you canot have an ASD and Attachment Disorder diagnosis together. Don't know why. And she has so many other difficulties that could be part of an ASD or closely related to them, that I would not even mention attachment disorder until she has been seen by a multi disciplinary team that has experience in ASD, Sensory Processing Disorder, Dyslexia/Dyscalculia, Dyspraxia, ADHD and possible PDA.

 

I'm not sure what the obsession is about eating. It could be part of a sensory processing disorder ie. not getting the sensory information that she is full. Is she the same with other things eg. can she tell if she is hot/cold, hungry/thirsty, can she tell when she needs the toilet? Or it could be an obsession with food, and she can't be eating that much if she is so thin? But if you are concerned you can ask the GP about it. Keep a note of what she eats and drinks for a week to show them as an example.

 

The questioning about her clothes could be anxiety due to the fact that they irritate her? Again this is a sensory issue. If it isn't sensory based, then it maybe anxiety based about changes that happen [called transitions], and she is trying to cope and understand the transitions by linking them to the different clothes she wears for different occasions/environments.

 

Anxiety is a huge part of being on the spectrum. You could try using a daily timetable that tells her in pictures what she is doing now and what she will be doing next.

 

Repetitive speech, behaviour and play is part of an ASD and also shows a lack of imagination. If you have a lack of imagination you cannot infer what will happen next or what the outcome of things will be. This feeds back into the anxiety that leads to more restrictive and rigid behaviour and a need for strict routines.

 

What is she like if the routine changes?

 

Can you easily get her out the house for school each day?

[mylittlemonster]

Thank you so much for all this information

 

Sally...She at one point used to eat like it was going out of fashion but not put weight on now shes just obsessed with seeing it in front of her but getting her to eat is a problem, she eats very little, it takes her up to 40 minutes just to eat a meal but even then its rare she finishes it and I never give her big portions its all suited to her needs its like she gets bored of sitting there.

 

Shes fine with toileting but will say shes hot and then say shes cold in pretty much the same breath.

 

As for routine, with having four kids to get ready and out the door in a morning my routine is absolutely spot on lol she knows exactly what I expect in a morning although of course i do tell her what she needs to do next. She is more than happy on school mornings because she likes the uniform its comfortable so we have no real problems on a school morning only the odd problem if i dont do her bobble right in her hair or her feet are not soft as she puts it as this effects how her socks go on and feel, the only problems arise on non uniform days as it always causes problems with the clothes shes wearing. In the run up to christmas with all the different days they had in school we did have a bad couple of weeks with her crying on the way to school and not wanting to go in.

 

She is quite happy to stay in her pjs on a day we are not going out. If we got up and said we were going somewhere she does get a bit upset if we change our decisions but not always overly upset just questions why and that we said we were going.

 

She does get upset over little things such as I move the carseat in the car to the other side of the car, or I add an extra blanket on her bed, or I cant find the clothes shes asked for so i change them. Its little things really what cause her more upset.

 

Oxgirl...I spoke recently to a social worker who said some of it sounded like attachtment issues but she didnt feel it could be and did query autism with us as her daughter also has it and a lot of what i said about my daughter was like hers.

 

Justine...school seemed on the ball at first after the parents evening in october but then in december after the school assessments they said they would get the senco to assess her and then two weeks later changed there mind and decided they would just observe so no she has nothing in place in school. She did get put on stage 4 for behaviour last week for hitting someone but noone even notified me of that, until I found out she had been stood against a wall for 40 minutes in sub zero temperatures for it. Im all for her being punished if shes done wrong but not flippin tortured as it was bitter weather that day

 

thanks everyone else who i have answered directly but all the info has helped a lot

[Sally44]

She maybe fine with the school uniform because she associates it with school and therefore knows what is going to happen. In other clothes anything could happen and she could be going anywhere, which is less certain and may cause more anxiety.

 

As she is falling further behind her peers that should trigger the Special Educational Needs process. Is she on School Action, or School Action plus, does she have IEPs.

 

The school should refer her unless they are intending to just leave things and let her fall further behind and then inform you in year 2 that she has not made progress?!?

 

You can arrange a meeting with the school SENCO and ask someone from the local authority parent partnership to come with you to that meeting. Ask the school to refer her to both the speech and language therapist AND the educational psychologist. Ask the PP person for their advice before the meeting, and ask them to take notes during the meeting so that you have a record of your request. When you get the notes from the PP send a letter into school with a copy of the notes of the meeting.

 

Then type or write a letter stating that due further to your meeting in school, and your daughter having difficulties

, and due to school informing you that she is falling behind her peers, you want the school to refer her to the speech therapist and educational psychologist to assess your child at the earliest opportuity. Ask them to inform you when they have referred her.

 

Also contact your local authority autism outreach teacher and talk to them [you can also talk to the SALT and EP], but it is the school that has to invite them in.

 

If you get no response after a month, chase up this letter with a second one asking them to reply to your first letter within the next 14 days.

 

She really needs to be on the SEN list for the school and they should already have her on it due to the difficulties you have mentioned.

 

Once a child has been on school action plus and you have had two IEPs, you can then write to the LA and ask them to carry out a Statutory Assessment of your child for a Statement. You don't need anyone to agree that she needs a Statement for you to ask for one. Many parents are told they won't get one, or don't need one. We were told the same, yet 3 years later, after an educational tribunal, my son is now placed in an independent ASD specific school for children with around average cogntive ability. There are speech therapists, occupational therapists and an educational psychologist on site. He is taught in class sizes of 8 and is finally coping and doing well. So although the LA EP said he did not need a Statement, he actually needed one to the extent that he has got practically the highest level of professional therapy that it is possible to get. He also has dyslexia and a specialist dyslexia teacher goes into his school 3 times a week to work 1:1 with him on his literacy and numeracy skills.

 

So don't be fobbed off.

[mylittlemonster]

Thank you Sally initially at that parents evening i felt so positive with school, they acknowledged she had problems in school and they had problems with her, even just two weeks ago the classroom assistant said the concentration is the biggest problem we have. Her teacher (a supply as her own is off sick) said she has the potential to take off and do well once she gets it and I again felt quite good until someone pointed out that its if or when she gets it and when will that be.

 

Her December assessments put her still below level one at national curriculum and thats when the headteacher said they would speak to the senco, this was a few days before they broke up from christmas and I assumed after christmas something would be in place even just an iep although he has never mentioned putting her on an iep, just after christmas he spoke to my partner about another thing and brought up my daughter, he said i havent phoned because nothings changed and she did ok in one guided task so were going to leave her now because we dont feel theres anything wrong with her learning but we will observe. I couldnt quite understand what task he meant as he told me before christmas that she was still below level one in all curriculum areas.

 

The headteacher even said before christmas he felt there was something with her but couldnt decide what it was. Her class teacher said you get good days and bad days with her and on the good days she will get involved and work better but on the bad days you cant get anything from her. They said off the december results she had made slight progress but then how much is slight, I wonder how far away from the level one we still are.

 

We have parents evening again at the beginning of march although her class teacher has only been in for two days since christmas and in between that they have had supply teacher or just the classroom assistant so not been a very consistant year for the children but I had said to her dad if shes still behind by this parents evening I want to get her seen as its getting so close to year two now and it worries me.

[Sally44]

You don't need to wait until March. Ask for a meeting in school. Speak to her class teacher after school and ask for her NC levels in literacy and numeracy and see how they compare with the expected national average.

 

Many SEN needs are inconsistent. For example dyslexia. They can have good and bad days. They can learn immediately, and then completely forget it again. The same for many other diagnosis such as ASD or ADHD. These are complex neurological disorders and BECAUSE of that, that is why the school should refer. They've admitted "there is something" "but we don't know what it is". So why not refer her to someone who can identify what it is??

 

If it were me I would find out her levels, compare them to the national average and/or typical for an average cognitive ability child, and if she is below I would ask for a referal to Educational Psychologist and speech and language therapist. If school are saying she has made progress, what is that progress.

 

My son was below or on, or below again NC level 1C for years. Yet his assessed cognitive ability for "non-verbal" assessments placed him as out of 100 children he would do BETTER than 93 of them. Yet he could not, and still cannot, read and write fluently. Believe me, if a child is falling behind the gap gets wider unless something is done to identify the cause and address it.

 

Be brave and ask for a meeting. Speak to the parent partnership and ask them to come with you. Ask them about her progress, ask for her current levels and what progress there has been ie. she was on P8 for literacy in December, but is now consistently on NC 1C and we expect her to finish the year on 1A. That shows improvement. Typically there should be 2 increment increases in an academic year.

 

Don't delay. If you have the meeting now, at the parents evening in March the teacher should be able to tell you the school has referred your child and the EP will see her on xxxxxx.

[Sally44]

I just wanted to add that the reason my son was not making progress academically was due to a number of special educational needs that the school were not recognising, and were not referring my son to the EP for.

 

Since then I have had independent reports and have been to an SEN Tribunal. My son is diagnosed with an ASD and now also Dyslexia/Dyscalculia, Severe/profound speech disorder - and some other stuff too. But that was why he was not learning to read and write. But the LA did not want it diagnosed, because they did not want to have to provide for this SEN.

 

Now my son has almost daily 1:1 therapy with the speech therapist, or occupational therapist. He has a dyslexia teacher for 1:1 teaching 3 times a week.

 

After being very ill, due to anxiety, and not being in school for 11 months. He is now placed in an independent ASD specific school and is doing really well. He isn't full time yet, but he only started there in November 2011.

[dekra]

Sorry if I am repeating anything already said I am using my mobile so only skim read the replies. I agree with the person that mentioned feral alcohol syndrome. A lot of what you are saying fits with that. There is a FAS charity and I went to a training day with them for midwives, it was very interesting. When I get home I will post their details as I think they will be a good place to start. The woman who set the charity up also adopted a little girl who was affected and she recognises the support families need.

[dekra]

Sorry stupid auto correct, that should say foetal not feral.

[Sally44]

And remember that a child can have a combination of difficulties/diagnoses. So it might not be just one thing or another, but a complex combination.

[Sally44]

This is a link to Wikipedia information about FAS http://en.wikipedia....ns_and_symptoms

 

I don't know if the child can still have FAS without the facial features?? Because I think you've said she does not have the facial features of FAS.

 

Really you need to follow this up and get referred to a multi disciplinary team that has experience of FAS and maybe another team that has experience of ASD/ADHD.

 

Because whichever is the cause of her difficulties [or it could be a combination of the difficulties], the fact is that these are real neurological differences. I don't know if the same approaches in education would be appropriate for both conditions.

 

I think the major factor that may distinguish the difference is if you had an educational psychologist or clinical pscyhologist assess her for her none verbal cognitive ability. This should highlight if she has around average skills in tasks that do not require an understanding of language. An around average result, where a child was performing very poorly in school would suggest a "specific" learning difficulty [which could still be due to FAS], as opposed to a generally low cognitive ability. The reason why knowing this difference is important is that a more capable child may not be suited to a LA special school that caters for children with moderate learning disabilities [ie. low cognitive ability].

 

[For example, my own son is around average on none verbal assessments. In some skills none verbal skills he scores better than 92 out of 100, on other languagae based assessments he scores less than 1 where 8-13 is considered average]. This is termed a spiky profile and is characteristic of an ASD. He is not suitable for mainstream, and he is not suitable for a MLD school either. He is now placed at an independent ASD specific school for children with an ASD or speech and lanuage/social communication disorder where all the children are around average cognitive ability. So they are taught at their level, but it is still a special school type of environment and SALT, OT and EP are on site. My son also has addtional dyslexia teacher input for him.

 

It maybe very hard to discern where one diagnosis finishes and another begins, as on this Wikipedia page [not sure how reliable their information is], they also mention learning difficulties and disabilities, speech disorder, ADHD, sensory processing difficulties, executive function difficulties etc relating to FAS. But you can also have all those difficulties without FAS and an ASD, or even as individual diagnoses in themselves. All rather confusing for you.

 

But when you are thinking about the school placement, you need to think about her cognitive ability, her communication/understanding ability, her sensory processing ability and/or a need for a certain low arousal, small class environment, addtional therapies provided by the school as standard from the SALT or OT, life skills, social communication skills, emotional and behavioural needs etc.

 

She may not be able to continue in a mainstream setting. That is something to think about now, so that you have something in mind. And if she is not going to be mainstream, the only other type of placement local authorities have is an autism unit [which may or may not be suitable], or a special school [which again may or may not be suitable, depending on the cognitive ability of the peers and whether she is similar to them].

 

Is there a FAS organisation that you can contact for help/advice?

 

A diagnosis or diagnoses is going to be useful in getting the right support in place.

 

You can also request that the LA carries out a Statutory Assessment towards a Statement. Usually this should happen when the child has been on School Action Plus for about 6 months, and you have had two IEP meetings where targets have been set.

 

You don't HAVE to have that, but it all helps to prove that your child needs specific support in terms of hours, staffing provision, approaches, therapies, environments etc. And a Statement is the ONLY legally binding document. So whatever a Statement contains MUST be provided.

Edited February 15, 2012 by Sally44

[mylittlemonster]

Thanks again

 

Yes ive contacted the FAS association and they have said it sounds like she could be on that spectrum. You dont need to have all the facial features you can still be on the spectrum without the facial features, she has a very thin top lip which is a sign and although she does have the groove over her top lip its only slight so this could be features but it could be herediatry, her mum also has a thin top lip as does her sister. Sally you have such a good knowledge of what I need to do, at the moment its just like a big brick wall lol hopefully this will help break it down

[dekra]

http://www.nofas-uk.org/

 

That is the link for NOFAS

 

ETA - Ahhhh I see you have the FAS details already sorry.

 

As for the facial distinctiveness, this is often only noticeable in babies and they can grow out of it quite young. So if it was only mildly presenting it may havegone before you even met her.

 

Whatever the cause I hope you can get the help you and she needs.

Edited February 15, 2012 by dekra

[Sally44]

I think most, if not all Local Authorities, require the child to have a Statement for them to be placed in a special school.

 

The Statementing process takes 26 weeks from start to finish. If the Finalised Statement is poorly worded it is not legally binding on the LA and you may need to appeal to the SEND Tribunal about parts 2 [section which identifies each and every need], part 3 [quantifies and specifies provision [in terms of hours of support and hours of professional therapy/input for each of those needs] or even part 4 [which is the placement, and should be a true reflection of parts 2 and 3] of the Statement. If you do need to lodge an appeal you have a deadline within which you have to lodge it. SEND Tribunals are usually 4-6 months after the appeal has been lodged.

 

It took me 18 months to get a diagnosis for my son. That is realistically how long it may take once you have been referred. And any referal can take months before you are even seen. Then you maybe referred to other professionals, and each professional likes to see the child at least twice over a 6 month period.

 

Then after the diagnosis, if the LA does issue a Statement she may well be 7 or 8, and if you need to appeal appeal she could be coming up to 9 years old. If she is struggling now, it does get harder in year 3, which is officially "juniors" as opposed to "infants". More demands are placed on the children and they have to be more independent.

 

So although you may think you have lots of time, you really don't because the whole process takes so long. And you really want to be sure about her secondary school placement. You would want all her needs identified and diagnosed. You would want a Statement in place and you would want to know which school could meet her needs.