All posts by Sensory Seeker

School considerations when starting with Special Needs

January 24, 2014Educationprimary, reception, school, starting schoolSensory Seeker

Starting School Considerations when a child with special needs approaches the Reception Year

When children with special needs approach the reception age their parents have some important, and possibly very difficult, school considerations to make. A huge influence in this can be whether the child already has obtained a statement of special educational needs. Considerations about whether to send them to a special needs school or mainstream. Or it may be that the parent is considering not sending the child to school at all.

It may be case of other factors more than just having a statement are required for particular schools – such as when a panel meets to decide who can enter, which maybe a school consideration if they have limited numbers.

Options about whether to send your Reception Year child to school or not

If you do not feel that your child is ready, then legally you do not have to send them until they are 5 (in the UK).Apparently it is even possible to get nursery vouchers until then too. Different schools will have varied opinions on deferring for a year. The parent may want to put the child straight into Year 1, instead of Reception, but checking with the school first is a good idea if it is to be considered. If the child goes straight into Year 1 they will be with their birth cohort, but then they may still be developmentally behind somewhat and may not fit in as well as those children who have already formed relationships (especially if they struggle with this). Note that on the other hand child can be very resilient and so do not be upset if you feel that changing schools is best, consider your child and what you believe is best for them. Then there will be the school considerations when the child moves onto secondary school (or middle school if there is one in the area).

School considerations about where is the best place that is right for your child

Do go and visit the school or schools. Are the school likely to listen to what you say? Have they previous experience? Have they a reputation in regards how they deal with Special needs children? – Good or bad? Do you have any other agencies going into school to help?You may be surprised at just how supportive they can be.

Our son is in a Mainstream primary with 30 hours one to one support – I think this is far more beneficial for his particular needs than at a special needs school. I was particularly worried about his toileting, and having someone monitor him all the time means he does not stay wet for long.

Only you truly know your child, and what you feel is best for them, and you as a family. The other thing we decided is that the special school would have been over 10 miles away and he was likely to fall asleep on the way home, further disrupting his sleep routine.

In the worst case scenario you can always pull your child out of that school – and find another or home educate.

This post was originally inspired by my own thoughts on our son starting school.

Disability Fairness: What’s Fair about Disability?

January 14, 2014discussiondisability, fairness, pupil premium, statement of special educational needsSensory Seeker

Disability fairness: I have been thinking about what does fair mean when it comes to disabilities. A few things have triggered it and really made me stop and question my beliefs and opinions. In the way we access help for those with disabilities, the way we treat those with disabilities, how help for disabilities is funded and whether we should make things fair for those without disabilities.

Disability Fairness fails in the fact that some people can obtain more help than others?

No Disability fairness with a Postcode Lottery

I was reading about the postcode lottery on A Northern Mum’s blog Type One Diabetes Making it Fair for my Warrior, about blood ketone meters being able to save lives for those with Type 1 Diabetes, but yet it depends on where you live as to whether you get one. This is far from fair and I really recommend you read the post for further information on this. This lack of disability fairness can, unfortunately, be extended to many areas such as speech therapists, portage, hospital appointments, operations and so on, due to people’s postcodes. Something ought to be done.

Pupil Premium

I have been surprised by the mixed reaction to the news that I found out that my son was entitled to ‘Pupil Premium.’ First of all I’d like to clarify that the reason he was allocated funding under Pupil Premium was actually nothing to do with his disability. From what I can gather Pupil Premium is money that a school can apply for if a pupil meets certain criteria, to help them if they are at a disadvantage to their peers. One of those criteria is that the pupil has received FREE SCHOOL DINNERS within the last 6 years, and this is how my son qualified. In fact I think it was 5 years ago that the company my husband worked for went into liquidation.

Since then my son has done his GCSE Maths a year early and gained an A* then you can see his fantastic GCSE results here (far from disadvantaged!). Needless to say he is doing his A-levels (at a Grammar school) – Maths, Further Maths, Physics and Chemistry. It is often mentioned how the jump from GCSE is to A-level is huge, even then I would say getting grades A-C are pretty fantastic. Did I mention that he’s at a Grammar school though? This means that his C grade in Chemistry meant he was disadvantaged to his peers and so the school have been able to seek funding. I’m not going to stop my son having any help he can, but already thought it was a ridiculous system and more so when I went for my 4 year old’s Statement of Special Needs Review.

Disability Fairness with Statements of Special Educational needs

There is no disability fairness in the process of obtaining a Statement of Special Educational Needs – whether you actually get an assessment, any hours, what hours, what support, how good that support is can be really variable, and not just based on the actual disability/need. Surely all of this should have a better system in place; something that makes it fair to all those who need it, no matter where they live.

I have previously mentioned how very supportive my youngest’s son school have been. I am really impressed with his progress and he can now count to 4 (and sometimes even 5). This progress would not have been possible without his full-time 1:1 support. His Statement of Special Educational Needs only covers 20 hours (the school have put the first and last 10 hours in financially). At the review the inevitable happened and we have lost the support from the Communication and Interaction Team, as he was not diagnosed with Autism.

It also sounds likely that his Statemented hours may be reduced, despite the fact it is apparent he needs full time support (as backed up with the school’s financial support). We have pretty much been told he will not get it (even though they can understand that most of the time (bar 5 minutes here and there) he needs an extra adult with him, as they have said that even the most severe cases do not often receive the full 30 hours! That the school need measurable aids put in place – but he is too severely immature to utilise such measures! So down to funding!

THEN it turns out that there is no criteria that he meets to receive this Pupil Premium – ridiculous! How can a pupil achieving a Grade C in Chemistry A-level (and I should imagine in the top 5% of his academic year cohort) be more entitled to funding than a child in the bottom 5% of his academic cohort. I wish I could take the funding from one child and give it to another. Basically if I want the school to be able to access this extra funding for my son then I should split with my husband and go on benefits?!

He needs this support to help him access the curriculum – as part of Every Child Matters. During the school Christmas Production he was supported with his issues in regards to attention, not lying on the floor, getting up & down off the stage and many others. There were so many of the other parents who seemed to be so proud of my son (with the help of his support worker) – and so it made me even sadder to read of a boy with Autism being excluded from the Christmas performance because they felt he would disrupt the others. This is why it is so important that the Government give these children the help they NEED and DESERVE.

Are Disability Benefits Fair?

Are benefits for the disabled fair, or should income be taken into consideration? Currently disability living allowance for children is non-means tested (I am sure it is the same for PIP but I have had no dealings with this) but the same amount is given (dependent on the “level” of care) no matter what the otherwise financial situation. Surely the amount should be on need – a bit like the Pupil Premium I guess, if someone has a household income that is really high they do not need the extra financial support as much as someone (with exactly the same condition) on a very low wage. I appreciate that there would be too much red tape to implement something like this to make it fair, but this does not mean that it is fair does it.

Treating those with Disabilities Fairly

I heard about how Robert Ethan Saylor was arrested for refusing to leave Westview Cinemas, Frederick, Maryland. After a viewing of Zero Dark Thirty which he wanted to watch it again but did not have a ticket. Three off-duty sheriff deputies from Frederick County, MD, Scott Jewell, Rich Rochford and James Harris, removed him from the theatre in such a way that the autopsy concluded that Ethan would not have died of asphyxia if the officers had not intervened. No-one was charged with Ethan’s death. Find out more and offer support at Justice for Ethan.

This upsets me to the core, not just as a human being but as a parent of a disabled child. They KNEW he had a disability and chose to ignore it. And over what? A cheap cinema ticket. The fact that my son has to grow up in a World where people are not willing to make allowances for his disability, to make life just a tiny bit more fair for him and his life. To accept that Ethan was not deliberately just trying to do wrong, that he simply did not understand, and just wanted to watch the film! I know life isn’t always fair, for anybody, but I do wish, hope, and even pray, that we are knowledgeable and compassionate enough to stop and think, make allowances if needs be, and try and make this a fairer World for all.

Disability Fairness to Others

Sometimes you need to make sure that things are fair for everyone. I have previously written about how it is difficult for Siblings of Special Needs Children it is hard. You (in my opinion) simply can not treat them the same, or if you did then it would not be fair. How is it fair to punish a child who does not know what they are doing is wrong, in the same way that a child who does understand? On the flip side though how is it fair on the child who does know it is wrong to see the child who doesn’t know ‘getting away’ with it?

For me, I feel that it is important that my two children without special needs appreciate the fact that their brothers do indeed do not experience life the way they do. We focus more on rewards for positive acts/achievements rather than punishing for bad (but if they have hurt each other they will still have to say sorry). I especially can see how in an educational setting it is important for both children to feel fairly treated, but I think that awareness is key and different methods of “punishment” are utilised.

What do you think?

Official Diagnosis – Accepting it is not Autism

December 27, 2013Personal PostsNot autism, Official diagnosisSensory Seeker

The Official Diagnosis of our son not having Autism

It was always going to be hard to accept whatever the Paediatrician said to us, the road to an official diagnosis was always going to be rocky. I had prepared to be upset when it would be announced that my child has Autism (even though I have been having to stop and correct people for saying it). Autism it is what people have heard of, isn’t it. It’s what people know and it feels kind of safe inside that label. When the official diagnosis came back as our son not having Autism it was initially hard to accept. This was despite the fact that I had been prepared that this maybe the case (see my post on Sensory Processing Disorder).

Why an Official Diagnosis of Autism is what I thought that I wanted to hear

Most people’s reactions were that it was good news – after all Autism is a lifelong condition that no-one particularly wants for their child (see my post on differences of opinion about whether people would want to take it away if they could). But the fear and uncertainty that an alternative diagnosis brought really made me want to fight against the outcome. Our oldest has Asperger’s Syndrome so we have an idea of how to deal with things, what we can do to help, where to go for support. Plus a diagnosis of Autism would have made it easier to remember what the official diagnosis is (but that is NO reason to want it to be Autism). I guess that, for me, it feels so much ‘like’ Autism that it just feels like he will not get the associated help but still have problems associated with his disability.

The Official Diagnosis

The official diagnosis was that his behaviour could not be explained by autistic spectrum disorder that a diagnostic formulation at the present time is one of language delay/disorder, developmental delay, immaturity of attention, play and social/emotional development.

What the Official Diagnosis may mean to his future

This may now affect so much including his statementing, his financial help, the way he is treated, his support in school, how people react to his behaviour, and so on. But for me the difference is one of knowing where to look for the support, . It is so much easier to find support groups and courses for children on the autistic spectrum, and now he isn’t in that category I am not sure if I can, or should access them. The situation is still the same, the same advice still works, but somehow everything seems different now. I am grateful that the school are doing all they can, he is coming on leaps and bounds. So far the official diagnosis has not changed that. But they are funding him the extra hours, expecting a diagnosis of Autism I presume. I’m not sure if at his Statement review he is still not awarded full time support whether they will be financially able to keep that up. I’m also concerned that he has a statement categorised as cognitive and hope that this official diagnosis will be able to change that to communication and interaction.

Staying positive after the Official Diagnosis

Whatever happens the official diagnosis has been made and there’s just no point getting upset about it. He doesn’t fit the Autism umbrella but they have been clear that is not down to parenting or behaviour problems. They have identified what areas he needs help with and there is support in place. This Christmas he has been amazing. He has developed so much and coped so well. It hasn’t gone without problems (his official diagnosis did not say there would be no issues) but watching how far he has come is just amazing. He is such a happy boy and really made this festive period special. We have so much hope for his future, even though the official diagnosis was not what we expected to be, and we do not fully understand what we are now dealing with.

What happens after the Official Diagnosis

I do not know whether he will later have another diagnosis, as feels is the case in how we were spoke to and the fact that the diagnosis says “at the present time.” This decision was made by a second paediatrician through a D.I.S.C.O. and we have to go back next month and see the original lady we have been speaking to for over a year. I’m not sure what will happen then, and whether she will add on any sort of Sensory Processing Diagnosis. What I do know is that there are suggestions for help, and that the best way to help is to play with him with something that he is interested in. This is important to me, because it doesn’t really matter what the label is, as long as we know how to keep moving him forward. We have a new speech and language therapist coming out to see him (and she also works at the communication and interaction to centre we wanted him to attend) and am sure the school will continue to support him and us.

If your child has been unable to get a diagnosis then you may be interested in SWAN UK , which is a project run by Genetic Alliance UK offering support and information to families of children with undiagnosed genetic conditions.

This is NOT a sponsored post.

Christmas Special Needs – Adapting life to make things easier

December 15, 2013Christmas, ParentingChristmas, Christmas with Special Needs, Special needsSensory Seeker

Christmas special needs can make things more difficult. We have learnt that the best way to cope with it, is it to adapt things to fit with our children’s needs. My oldest, and now my youngest, son do not like the disruption to the routine (a lot less so for my oldest now, so I feel there is hope for the youngest as he ages). When my oldest was younger Christmas Special needs meant that he did not like the absence of doing things he liked at school (such as maths) , and it being replaced by things he did not like such as singing and dressing up. The structure was gone and the visual and auditory stimulation was high. It was such a difficult time that I really could not tell you what happened. It is all a bit of a blur. I remember that I just kept telling myself that his behaviour would settle as soon as Christmas was over, and the routines had resumed (well at least until Easter anyway). This is pretty much how things are for my youngest now. My oldest accepts the change much more easily now (he’s 17 years old the end of the month), but just wants to play computer games all the time.

Christmas Special Needs – The Christmas Dinner

Christmas with Special needs is the reason that the Christmas dinner came to happen on Christmas Eve. I really could not cope with an undiagnosed child at Christmas Special needs ( Aspergers), cooking Christmas dinner and doing all the other Christmas things. I was a lone parent and he was a fussy eater. Trying to encourage him to stop playing his latest game and come and eat veg was never going to happen. But by moving Christmas dinner to Christmas Eve then I could encourage him to eat with the promise of a visit from Father Christmas. It also meant that it left me free to help him deal with Christmas Day – as I was not in the kitchen cooking.

Particularly advantageous if he was getting frustrated with his new toys, as well as being able to sit and encourage him play socially with me. Instead Christmas Day consists of eating foods he likes – picking on cold meat, curry snacks, fruit, chocolate, mince pies, crisps and the like, as and when (a break in the game allows). On a practical note, you can always run to the shops if you have forgotten to buy something too (like my pigs in blankets last year!) It has also become our tradition and I think it has many advantages, not just for children with special needs.

Christmas Special Needs – The Decorations

This year we have gone one step further to help cope with Christmas special needs by having not put up any of the decorations (well we have the odd one or two). We have always put the tree and everything up on the 1^st December, but when I noticed my youngest son being more ‘spinny,’ distant and wetting himself at least daily, and realised that it had happened as soon as the school had their tree/decorations up I decided that we would delay it. One day he was particularly distressed (he’s really touching people a lot more) and had to come home from school, I noticed how much he settled in the non-stimulating environment. It is hard, and our 6 year old is desperate for the tree to go up – but we just discussed putting the tree up to our youngest and he went wild and hurt said 6 year old. We had to monitor him for ages after that. Luckily my husband breaks up from work on the 17^th so there will be 2 of us around, allowing one to cook and one to look after him, so we are waiting to put the tree up then. If he could not have had the time off we were considering just letting the boys decorate their room (as oldest and youngest have separate rooms) and have a tree in there.

Christmas Special Needs – Aspects of Christmas enjoyed

We thought about the aspects that they do like and those to avoid when considering Christmas special needs. All the boys have advent calendars – which helps them count down to the big day – so there is still some excitement, preparation for it. We have taken the youngest to see Father Christmas, and got him to talk about what presents he would like. These are the aspects of Christmas that he enjoys, and plenty of dressing up too. He also has his visual aid book at school – so he still knows what to expect, to some extent, at school, and makes it feel structured for him, and let him know how much of the school day is left.

Christmas Special Needs – Rewarding the coping

We are rewarding our youngest with computer time (his favourite activity) at the end of most days, just to help him cope/focus. We are having to really be aware of his toileting, and regularly taking him, as this is an area he is really struggling with during the festive season. I think it is important to remember that no matter how difficult we may find his behaviour is to deal with, it is a million times worse for him, that it is his inability to cope and anxieties showing.

I have not mentioned Autism in this post as it has been decided that it is not what my youngest son has. I need to write a post about that but really finding it difficult. I do still feel that whether it is consider as Autism or not then the methods used to help him remain the same so have looked on the NAS at their help with Christmas advice.

If anyone else has any help and/or advice on coping with Christmas I would really appreciate them sharing it in the comments.

See also Christmas is coming and my son is getting stressed – over on the Special Needs Jungle – talking about Christmas with her teenage son with Aspergers.

Parent Carer of a Disabled Children – Undervalued?

November 13, 2013Financial helpCarers Allowance, disabled, parent carer, undervaluedSensory Seeker

As a parent carer of disabled children I feel that we are deeply undervalued. Well carers in general, but I would like to focus on being a parent carer of disabled children. Those of us who do not go out to work, and earn a certain amount, seem to be considered that we are not doing enough.

This post was actually triggered by a comment about whether I would like to come off benefits at some point. You see the thing is I am a parent carer as I have 2 disabled sons (only one of which I receive carers allowance for). Some would argue that they are my children and I should not receive money for them (see my previous post on Pinkoddy about why I feel it is right for people to claim disability living allowance for their children). But I want to do whatever I feel will help them most in life.

You can claim Carers Allowance as a Parent Carer

Carers allowance is paid to those (including if you are a parent carer) who are looking after someone who receives:

Attendance Allowance
Disability Living Allowance – the middle or highest care rate
Constant Attendance Allowance at or above the normal maximum rate with an Industrial Injuries Disablement Benefit
Constant Attendance Allowance at the basic (full day) rate with a War Disablement Pension
Armed Forces Independence Payment (AFIP)
Personal Independence Payment daily living component

The parent carer (but you don’t have to be the parent) must be over 16 years old and care for at least 35 hours a week, for which they are given an allowance of £59.75. Ironically the comment was made after we had been discussing the fact that self-employed people should be earning at least the minimum wage, but this equates to less than £1.71 an hour! Well below minimum wage. Of course after putting your career on hold if you are lucky enough that child will become independent enough to leave home and make a life for themselves. But what of you then – too old to retrain and lacking in experience to work other areas, the whole time you have been scrapping by on minimum money.

Now I know that you can be a parent carer and work around these hours (say when a child is at school). I feel that you are lucky if as are a parent carer you have found a good enough employers to be flexible with time off, or have a child who, you feel, does not need you to be readily available. Obviously some people HAVE to work, as Carers Allowance is not enough.

For those of us who feel that we need to be (and I am well aware that parents of non-disabled children may feel this too) available for our children – for IEP meetings, annual reviews, because your child is not coping/need to go to the hospital/has fallen asleep – whatever the reason to be taken out of school at short notice – then this small amount of money helps make that a possible option. Whilst they are at school we may also be doing things to help them when they are home again (maybe setting up something to help them develop socially, emotionally, their language, fine motor skills etc, or arranging appointments, going through paperwork, washing their wet bedding – I am sure the list (and seriousness) could go on and on.

And of course there’s all the things that as a parent carer you have to do, above and beyond what you would do for a non-disabled child, for the 35 hours that you are with them. The one thing I am pleased about is that to receive carers allowance you do not have to justify what you do, you just have to show that the person you are caring for has a need to be cared for.

And yes I would like not to have to feel like the best situation is for me to claim, I would love that my son had no additional needs.

Do you feel that you are a parent carer who is undervalued? What kind of things do you feel are beyond the norm that you have to do in your role as a parent carer? What would you say to someone who tried to undervalue what you do?

Different Disability Opinions – Some you never Expect

November 7, 2013ParentingDisability Difference of Opinion, Katie priceSensory Seeker

I think the one thing as a parent of a disabled child that makes it easier is knowing that you are not alone. Sometimes you may do that awful thing and realise that things could be worse and grateful that they are not – or maybe that’s just me. See until recently, I thought that there were very little different disability opinions on certain topics.

Different Disability Opinions

I would fight tooth and nail to get my children every bit of help that they need. This is where there are different disability opinions as I know that other people feel that their children should be just accepted and that starts with them.
I believe that if you can access financial help to better a disabled child’s life then why not do everything to help improve their lives.Again there are different disability opinions in this matter as other people believe that it is their child and they want to pay for them.
Some people could never leave their children, either due to needs or not feeling it is right that they are their responsibility.I guess that the different disability opinions may be to do with the nature of the disability too, as there are others desperate to get some respite but funding does not allow, and others who are able just to leave their disabled child/ren to go off on holiday, leaving them with friends or relatives.
There are different disability opinions as to whether we would, if we could, take away the child’s condition if we could or not – would or whether this would take from the disabled child/ren who they are as a person?

Different Disability Opinions I didn’t think I’d hear

It’s no-one’s fault, certainly not the parents that a child has a disability. Certainly not bad-parenting, or a way we have behaved with them. I hope this is a different disability opinions that if someone actually thinks it keeps it to themselves please.
That there is no hope for the disabled child’s future. I am very pleased to say that my 16 year old son has got his first job – something we never thought we would see, especially after the way they talked about him in his Reception year at school. I believe there is hope for all children and each one has an important future.
That parents are NOT “lazy” and “ignorant” to access the help and support they need – However Katie Price said that they were in an interview with Radio 5, described here by BBC Ouch Disability. I tell you what Katie as you are so the opposite of lazy and ignorant, why not pop round to some of these homes and help them out, instead of knocking them even further. This really is one of the different disability opinions me and Katie Price are going to have to have – as I know that having a disabled child/ren means it is impossible to even contemplate being lazy! And usually quite the opposite of ignorant but having to research and learn everything you possibly can about your child/ren’s disability and how you can help them.

This information was brought to my attention by DownSideUp – see what Hayley and others have to said on the matter here

Resistant to Change

October 24, 2013Asperger's Syndrome, Personal Postsresistant to changeSensory Seeker

Resistant to Change – Meltdown or Avoid

One of the things we were asked during the assessment to determine whether our son had Autism was just how rigid our routines have to be – is our son resistant to change? No he doesn’t like his routine changed and, especially at Christmas, this can be a big thing. However, we do not have to have a really strict routine, with many rituals. Personally we feel that this is because we couldn’t do it, so don’t. My brother (who has Aspergers) was resistant to change – he is now approaching 30 years old and is most likely still playing with his wooden blocks with letters on that he had as a child. Growing up I remember that he had to make sure all his teddies were a certain way before he could even leave the room. Possibly we are ‘lucky’ that our son’s needs are not like that. We do feel that a certain amount of forcing our children beyond their comfort zones, and handling meltdowns (as opposed to avoiding them) is beneficial for the long run.

Resistant to Change Experiences with our Oldest Son

Our oldest son, who has a diagnosis of Asperger’s syndrome, was resistant to change. We would tell him that we would be going to place X via place Y, and if something cropped up and you had to go to place B too he would have a meltdown. It went from changes and big disruptions, to him wanting to know every minute detail, and nothing could change. We were exhausted trying to even plan taking him anywhere, and wished we didn’t have to take him. Days out were so much less stressful without him – which made us feel awful as of course we felt he was a valued member of our family. Even now he is resistant to change, he does not understand why he should go anywhere, or do anything, that isn’t going to directly benefit himself. We are keen to work on this straight away with our little Sensory Seeker.

How does your child deal with changes? We find that even small changes at school can be really upsetting for The Sensory Seeker. Currently he has been wetting himself more often. Does anyone have any tips?

Autism Assessment: The Video Appointment

October 22, 2013Asperger's Syndrome, Personal PostsAutism Assessment, paediatrician, Video AppointmentSensory Seeker

Last week we had the big appointment, the next step in the Autism assessment. As you would expect we still do not really have any answers. The paediatrician took me and my husband into one room whilst two speech and language therapists went into another room to play with our little Sensory Seeker. It was checked several times that we were clear and okay with the fact that they would be video recording his behaviour.

At the beginning of the Autism assessment it was made clear what we and they hoped would come out of the appointment. I was clear in the fact that I believe him to have high functioning Autism and would like a diagnosis if that were the case; and if not to discover what it was.

Autism Assessment – Pregnancy, Birth and the First 2 years

During the Autism assessment the paediatrician asked a lot of questions about the pregnancy and first two years of his life. It makes me feel pretty bad because it is all a bit of a blur and to be honest he cried a lot, I found it hard to play with him (he still has limited attention span), and can’t really remember much mother-baby communication (apart from a smacking of his lips kind of clucking sound when he wanted feeding).

The paediatrician could not have been lovelier for the duration of the Autism assessment, asking how I’d coped with 4 boys (especially since I had been breastfeeding both of the youngest 2 at the same time). I did remember how empowered I had felt when our little Sensory Seeker was a baby, especially when I did not give up and let people tell me that my breastfeeding was the cause of his weight loss.

She reassured us me that his behaviour was not down to parenting, and nor did she believe that he was suffering from a developmental delay (although I’m sure I would prefer this to be the case so he could catch up I just know it not to be true). That they had enough experience to be unpick the complicated nature of his behaviour and see which boxes he ticks, and categories he falls into. That actually, mainly due to his language developmental delay, he may end up diagnosed as something now, and then a few more years down the line reassessed and re-diagnosed. That the important thing was to establish what help would suit him best right now. The thing is I know this Autism assessment will question his imaginative play and language delay coupled with just how bright he can be – which conflicts an Autism and Aspergers diagnosis. He may still remain undiagnosed.

Autism Assessment – Different view points

There’s always a worry that people do not see what we see – and I am sure I can say we here and it’s not just me. So it was reassuring that at the end she went and spoke to the language therapists, who took part in the Autism assessment, they described him (and the way he plays) exactly as we just had. What that all means I do not know.

I know the paediatrician has arranged a meeting with the school next month – so there will not be any answers until after then. But things are coming along well. His one to one support is looking after him well, and I can see he is popular among some of the children. I saw a couple of boys doing this special ‘tickle’ thing our boy does yesterday to him.

Every morning we go in and we look at his visual book together. His one to one shows him the picture of what he is going to do and then he finds it in his book and puts it on the next page, then the next picture, then the next – until he can see what he is doing for the whole day. His one to one has copies of the pictures and together they pin them to a wall in the book corner. As the day goes on, and the activities are done, she takes them away. This means he can see what is left to come, and sort of a judge of how much of the day is left. I take the book home and we can then ‘discuss’ what he has done at home. I’m finding he is getting more and more patient with it all, a clear sign his attention span is developing too.

Diagnosis Autism – What will tomorrow bring?

October 16, 2013Personal PostsSensory Seeker

Diagnosis Autism Final Assessment

So the time has come. The decision will be made. What will that decision be? Diagnosis Autism ? Will there be any going back? How much will it change things? Tomorrow we attend a social clinic. There they will film my son. And me. Playing. They want to analyse whether he has imaginative play and what his relationships are like. And well I don’t know what they are doing. Probably for the best. But from this they will finally decide whether my son will get the diagnosis Autism. Or not. See my previous post about This is My Child: Undiagnosed.

Diagnosis Autism The Emotional Rollercoaster

I am riding a massive emotional rollercoaster. I’m not good with emotions myself. Maybe that’s the problem. He does not need a diagnosis Autism. Maybe he just needs better support than I can give. But the more I wish this was the case I just can’t accept it this time. My son has special needs. I wish it were even less obvious. I mean it doesn’t even matter – he is happy! He is supported. He is loved. I do not even know what I’m scared of. He has made new friends at school and is settling well. The school are supportive and have put in place full time 1:1 support. They accept he has additional needs, whether or not he gets a diagnosis Autism. They do not think I am doing anything wrong.

Diagnosis Autism or Not and Impact on the Statement of Special Educational Needs

When a child receives a Statement they must have a Primary need in one of the 3 areas. Basically there’s behaviour, Cognition and Learning, and Communication and Interaction. To attend a Communication and Interaction Centre (as suggested was the most suitable place for our son) then the child MUST have Communication and Interaction as their PRIMARY NEED. The Communication and Interaction team usually see the child for a lot longer than they have seen my son so far (the delay is a whole other story) and because he doesn’t have, but is awaiting to see if he is going to get, a diagnosis Autism they felt it wasn’t worth arguing against the fact that his Statement has his primary need as identified as being Cognition and Learning. That the panel who decides if a child can go to their Communication and interaction centre would be most likely to turn him down too, as there’s not enough “evidence.” But the communication and interaction team stayed with him because I wanted him to go to this centre (where most of the children have Autism). But what if it is not diagnosis Autism? Then what? His statement will not be changed and he will not keep the team looking after him. The switch sounds like it will then be harder to get the hours on his statement.

Diagnosis Autism realising how lucky we are

Maybe I am just panicking. I keep being told how lucky I am. And I know there are children who need so much more care, I do. My son is lucky and I am lucky to have him, that I do not deny. And to have a Statement in place before he even started school too. But that doesn’t stop me worrying about my little boy and wanting to do the best by him.

So we shall wait for tomorrow and see what it brings.

Here is a help page by the NHS

This is not a sponsored post.

Tesco Toy Testing & A Trip to London for Our Sensory Seeker

October 15, 2013Personal Postsdays out, LondonSensory Seeker

We were delighted to be invited to London for their Tesco Toy Team Casting day in Central London. They wanted a mix of children aged between 3 to 12 years old; well I have a 4, 6 and 10 year old boy who fitted the bill. Tesco Toys include good quality games, dress-up costumes as well as traditional toys. Tesco Toy testers are required to share with the nation what Tesco have on offer. It is felt that children can be the toughest critics so Tesco Toy testers needed to be super-enthusiastic little boys and girls to be the ones responsible for putting them through their paces and being directly asked what they thought.

Tesco Toy Testing Trip to London

So off the five of us went for a long journey to London. We caught a train at just after 8am, armed with two 3Ds and a tablet, some spare clothes (in case the youngest had an accident) and some snacks.

We were a bit worried because last time we had taken the boys to London it had all been a bit much of a sensory overload for the youngest and he did not cope well. I’m not sure if he was more able to cope, as he’d been before, or if we were better prepared but I could not be more proud of him. We didn’t even need his spare clothes.

Tesco Toy Tester with Disability

In fact he was the star of our family as he got right in there with the toys – immediately spotting his favourite cowboy Woody’s hat and claiming it! He took it well when the Octonauts Octopod Playset (£31.99 from Tescos) was taken upstairs so another child could be filmed saying why they liked it, and just got on and played with something else. Note I have included a link here because I believe you need to check it out – this is going to be a firm favourite this Christmas.

He listened well to the instructions of what he was meant to do and co-operated when they took his photo. When the boys did go upstairs (I thought it best to send them up all together) we all thought he wouldn’t say anything. But then right on film my 6 year old said, “my brother can’t talk very much” and my little man piped up, “Yes, I can!” It was so funny. He didn’t say much and the guy did not really get him talking about the Octonauts Octopod Playset but he looked cute.

He really enjoyed the day and was asking over and over to go back again the very next day. Now we are waiting to see if the boys are called back to become an official Toy Tester. If nothing else he is really big on Batman lately and we discovered the Batman Imaginext Batcave.

Tesco Toy Testing over – Things to do in London

Whilst we were in London we also popped back over to the National History Museum, where little man had remembered that there were dinosaurs. He did not cope well with the crowded bridge over the dinosaurs again. We also got to go into the Princess Diana Memorial Park. This is a fantastic place and I recommend it to anyone. Not only is it a fab park but it gave us the opportunity to go to the toilet for free!!

This is not a sponsored post. My family’s transport to attend the event was covered, and the boys did receive a goody bag but writing a post was not a requirement.