Tag Archives: disability

Are my children's difficulties my fault?

Could a Diagnosis have saved our heartbreak?

As a parent there’s no real breaks. You are not allowed to lose your shit. You decided to have a child and that’s the end of it. Having a child with additional needs is no excuse – there are no allowances. I was reminded of this fact after finding it too much to cope with the Summer holidays alone (as my husband was working) with 4 children – three of which (it turns out) have additional needs and my house just falling apart – never mind the mess. Feeling so tired, exhausted (physically and mentally) and every burden weighing on my shoulders. I had no idea that this would lead to attending a Child Protection Conference in order to keep our children!child protection conference and autism

I discovered that the boys don’t like change – even if it is rewarding them for something. So can you begin to imagine how hard the holidays are for THEM? It was the summer of additional challenges, as our oldest was moving out to University – but not really doing much about it. He wanted to go without any real mention of his Asperger’s – just trying to get on with life – but unfortunately his condition had other ideas. In retrospect having my hair cut from reasonably long to spiky wasn’t the best idea. I was finding it all a bit much to cope with and I didn’t feel it unreasonable to ask for help (from my family) – simple things like the children flushing the toilet after themselves and not urinating all over the floor! After all the youngest of them was 6! Respite has never been an option for us as I am aware that there are children with needs far greater than mine, whose parents are not even getting this kind of support. Extended family never really have the children, not even for a day – well actually apart for the one child. putting added pressure on him (this has since been addressed). Just wanting, no needing, a little bit more help but it was not coming.

toothpaste in the overflow
I just wanted a day where I didn’t have to deal with extra things such as toothpaste blocking the overflow

It is all a bit of a blur now, and I don’t remember why it got on top of me so much more than any other year but it did. I can’t think about my kids as being a burden because they are not – but their needs were just too much for me to handle on my own. My basic needs just were not being met (I am talking being able to go to the toilet without something happening that meant I need to rush to ensure their safety!). I guess it wasn’t what I expected to be doing with children of their age. Of course they were just children. I should have been able to tell myself that it did not matter. Who cares if there is stuff everywhere; mud piling up on the floor from where the bikes have gone in and out of the house; why should my children load their own dishes into the dishwasher right?

This says it all for me today #rotten #nature

A post shared by Joy Gloucestershire UK (@pinkoddy) on

And then I snapped. . . . .

You see no matter how many days I coped with goodness only knows what, that one day when I just couldn’t take it I threw a toy across the room and screamed how I was fed up. I threw it so hard it made a tiny mark in my laminate flooring. The kids were upstairs and so they would have heard it. I felt awful. But never really thought more of it beyond that day. I apologised to the kids and got an earlier night. In fact it was completely forgotten about until some 3 months later when my life changed so much.

This picture caught my eye. Wonder whether people talk about it when they see it? How does it make you feel?

A post shared by Joy Gloucestershire UK (@pinkoddy) on

The Beginning of the Nightmare

I don’t really know where it began – but one day I asked our 12 year old son to load the dishwasher which resulted in him punching me rather badly. He then put a picture on Instagram basically saying I got what I deserved. I did hit him back in order to defend myself before pinning him down. My husband arrived and defused the situation. I said something stupid which was meant the way it sounds and this resulted in further foolish behaviour from my son that ultimately led to the school ringing Social Care on us. Initially a nice guy came out, and this was the first time anyone had mentioned that they thought my son has special needs. The guy from social care (from the RATs team) tried to pass us on to the appropriate team to get help for our son and assured me we were doing all the right things. We were unaware that they had decided to close the case and were desperately waiting for help. The only reason someone else came was because I phoned the police when our son attacked me again – and the case was re-opened and passed on to someone else.

I feared that someone had done something to our son (due to things he was doing online but I will never know because no-one could get him to talk and they just gave up trying to find out). I was honest about everything as I wanted help – even just to be told coping strategies, so I told Social Care what I did the day I snapped. I was worried that it could be my fault (which is a nicer thought than him being groomed online) that I brought my pre-teen son’s behaviour on myself (there was a lot more things he was doing but I will not go into that here for his sake): They agreed it was.

Before I knew it there was a team from the Diversion from Care and Placement Team – talking about doing things to prevent my children going into Care! I have said before how I feel I may have Autism but never before have I truly felt this – thinking of only I could be less honest and say/do the right thing. I was looking up every bit of information I could and my husband was getting stressed that I sounded too textbook. Social Care had nothing to offer in the way of help – they came to see if they could get us to do family things together – but actually ended up suggesting we do less. You see my family are my life and I plan so much to enrich their lives and ensure they feel loved! The new Social Worker saw things differently and decided that my children were at severe risk of harm of emotional abuse from me! Even the fact that I have provided them with a desk each (which are covered in toys) as I am apparently too pushy! Do you know how that hurts – even now is that she was saying that it was because I was abused as a child: That I did not even realise that I was doing it. Fearing she was right and that I was oblivious to what I was doing I waited for help – only stopping myself from suicide because I knew that that would help nobody. I can fully understand the lady who has run away with her children because the thought entered my head too!

I found myself in a Child Protection Conference defending my right to keep my children. Absolutely everything brought up and used against me. From putting my children in danger by putting their pictures online, to the fact that my son’s notes had not been updated over a medical matter – so I was blamed for not caring and it ultimately being my fault. Feeling a sinking feeling as they recalled that my son broke his arm badly when he was only four years old – and I had no witnesses around. Things I said twisted, people saying incorrect things in front of us. I had to stay quiet so as not to come across as over-emotional (again something they said as I was SO upset about the experience). The whole experience completely disrupted my family (they had to keep going out and pulling the kids from school and questioning them) – did I mention that they do not cope with routine changes. Plus they wouldn’t consider that The Sensory Seeker has a disability (despite the fact that he had a statement of educational needs) because he was NOT DIAGNOSED AS AUTISTIC. So when he apparently said that he heard me say that I wanted to kill his dad it was used as actual evidence of how evil I am (I hadn’t even said this at all!)

Parents are meant to get all the reports 48 hours before the Child Protection Conference – but this wasn’t the case. The Chair hadn’t even got  all the information at the start of the CP Conference – and some of which we were blamed for (although we were unaware we had to give it!). Our son was asked if he wanted to go because of his age but instead sent an advocate. I didn’t think it a good idea he went especially some of the things said about him and us. In fact it was even suggested that The Sensory Seeker’s difficulties are due to ME emotionally abusing him as he did not get an Autism diagnosis! Thankfully his head teacher knows how hard I have fought to get everything possible to help our son and how much progress he has made with this support and backed me up. Still absolutely heartbreaking to hear, and what if I wasn’t so forthcoming (or pushy as teachers are calling parents that fight for support!).

physical and emotional abuse definitions child protectionThe Child Protection Conference ends up with a vote – everyone around the table says what their verdict is and the majority is the deciding factor. As I sat with my pen and paper tallying up the results it came down to the last person. People who didn’t know us, didn’t know the facts and certainly had things wrong! Luckily for us it went the right way – but frightening to think one more vote and things would have been really different. We did not receive any help, support or advice. The social worker passed us on to a family worker and she had fleeting visits at our house before passing us to a charity who just had one meeting at the school. The awful thing for me is that they closed the case down after our son got accidentally burnt with an iron and he beat me up one more time.

We never considered our son to have special needs but after the first social worker suggested it, so did the police, the school and CYPS – but no the latter won’t assess him and also closed the case down. He hates seeing people and has calmed down so much that we just don’t want to annoy him. There was a lot of things that went on that year, and one of them was that he got kicked off the school bus (apparently for persistent bullying but it was the first time we had heard about it). Social care were really keen that he caught that bus again but we decided against it. I later heard that the bus driver was taken off the route as he was found to behaving inappropriately let’s say with the children!Are my children's difficulties my fault?

I am so proud of our son and how he has come out the other side of this and is like a different boy again. Although we are still struggling with getting him to do basic things at least he isn’t being violent any more. As for me I have been taking anti-depressants and do not think I will ever get over what social care did to me, and my family and the thought of what could have happened. I think about all those poor kids who are having all manner of awful things happen to them (and even what happened to me) and it makes me feel sick to the stomach that I was consider even close to the same. That they wasted so much time interrogating us when actually if anything I am guilty of spoiling my kids and doing too much for them.

I want to thank everyone who supported me, especially my husband who held me up and defended me. I thought the most awful thing was going to happen and that I would have to leave all the people I love in order to keep the rest of them together as a family. I have felt so scared for so long of sharing my story for fear of losing or upsetting them – as well as people who don’t know me judging me. But I wanted to share in hope that I can help someone else.

 

University with a Disability

University with a Disability

When my son was diagnosed with Asperger’s Syndrome at aged 10 I never in a million years thought that I would be having to help him think about University. But he has come on so far in that time it really has been amazing. I shall not embarrass him by listing all the things he couldn’t do – I am sure if you are reading this you may already know yourself. But what now? Will he really be able to cope at University? Will he eaten enough, clean himself enough, not get into trouble with other people? Are these not the thoughts of any teenager about to fly the nest – is he really any different anymore?

University with a Disability

The following information are things that I have gathered about disability in relation to my son with Asperger’s syndrome; there may be relevant information and links for other disabilities but obviously there is more to think about and this post may only be a starting point.

Going to University with Special Needs – UCAS

The first hurdle we are struggling with is UCAS. My husband and I did not go through UCAS when going to University it is our first time dealing with them. Of course communication is the first big issue here. I really am not sure whether our son is not being told the right information or not at all. He is not doing General Studies (timetable clash) and according to him there does not appear to be any way they are making up the fact that he is missing what they are being taught about UCAS forms. UCAS is the Universities and Colleges admissions services – basically he will need to fill out one of their forms saying which Universities he wants to go to. The deadline for UCAS is January 15th 2015 – my son just thinks I am being a pushy organised parent.

UCAS can be done online, and saved and tracked. There’s a 10 digit personal ID number – and this can be shared with people who help fill out the form. Some of the form can also be shared with the student finance company. Tuition fees loan can be borrowed regardless of family income/situation. 5 choices can be made. It costs £12 to apply for one course and £23 for two or more.

This will include a Personal Statement – that is talking about himself, selling himself telling the places why they should pick him to go on their course over anyone else. It has to be a minimum of 1,000 characters This in itself is proving difficult as it is hard to get him to do anything to put on the statement, and also because things are so black and white he does not understand the whole, because I can do x then y. For example, when applying for a job as a lifeguard he put that he could swim a length under water and knew how to deal with children. To him these were the qualities he had to be a lifeguard. They said this wasn’t enough. We then talked about how he was studying science and was therefore good at observing hazards – he did not see how that was related to being a lifeguard because the hazards were not the same.

Universities must make reasonable adjustments to account for the disability. Disclosing the disability can show evidence of character and achievement (see why you should disclose that you have a disability). This may be something like learning the ability to manage money, or that the disabled person has learnt to cook their own meals. This shows determination and using skills to sort things out.

Deciding on a University

The amount paid back each month for a Student Loan will be the same whether the tuition fees are 6,000 as they are 9,000 (a year). Institutions that charge more than 6,000 in tuition fees have to put in place measures to help students from poorer backgrounds. Waivers and Bursaries – if there’s an option then it is better to have the Bursary as it is more likely to be higher and meet the costs of the basic needs. UCAS has a guide on helping disabled students find the right course for them.

Students with Asperger’s are likely more difficulties socially and with life skills. These may include understanding and processing language, sensory issues, diet/fussy eaters, working in groups, struggle with changes to routines, independent study, taking things literally, understanding jokes, and so on. So it is pleasing to hear that several Universities are offering summer schools to help those with Asperger’s adapt (including Birmingham, Bath, Cambridge and Aberystwyth.

Open Days

It is best to attend the Institutions before putting them down on the form. Have a look on their websites for when they are holding their open days. Some will require you to book them in advanced, others you just turn up on the day.

The Course:Selecting the place of study will depend on what you want to study. Check out the league tables to see which are the highest rated, and what others are saying about it. Think about whether future employers will be influenced by the institution choice. Depending on the course some careers are determined by health and have rules called ‘fitness to practice’ set by professional bodies to ensure people can do the job – this does not mean disabled people are automatically ruled out though. Does the course require an admission test to be sat? The disability officer (see below) can help with this. Tutors can provide advice on the course options -what mix of lectures, number of assignments, seminars there are.

The Requirements: Make sure you have enough UCAS points to secure a place, and see what typically they accept. Just because there isn’t enough UCAS points does not mean that a place cannot be obtained. If the offers received are not taken or none are given then students can go through Extra. From February 24th courses with vacancies can be applied for, and the personal statement can be amended. Then if no offers in June then they can go through clearing.

The Location: Is the place near to home. Therefore, all the support of living at home is still available. If moving away think about the accommodation and any additional difficulties that may need extra help.

The Support: Each University will have a student support or Disability Officer. Speak with them to determine what additional help can be provided. They will be able to advise you on whether they could provide support/help/advice to meet needs. This might be just someone to meet with once a week to talk about academic/care/financial needs – so have a think about what it is that needs additional support. If contact is made before the open day then it gives the disability officer a chance to find other disabled students wanting to do the same course, and/or those already on the course to be able to meet up with. I think this also will give an indication as to what level of support the disability officer is likely to provide. This may give an insight into other difficulties that may be incurred that had not been thought of. Social services can also be involved to help with personal care needs.

Financial help for Disabled Students

All students are able to apply for loans for tuition and living costs. On top of this there is the Disabled Students Allowance –  The support depends on individual needs and not income. It’s paid on top of other student financial income and does not have to be repaid. This can be up to a maximum of £27, 678 for the academic year 2015-2016 (most students get less). They do not cover disabled costs that would be incurred if not attending the course, or that any student may have. Things covered would include specialist equipment, non-medical helpers, extra helpers, and costs related to the course/disability. Cuts have been proposed for 2015 that DSA will be only be given for specific learning difficulties if their needs are considered complex. It will no longer pay for standard computers for disabled students or note-takers and learning mentors.

The University will also have a hardship fund – for those experiencing financial hardship – one of the examples is if the student is disabled.

Other Sources of help for Disabled Students

Skill 

Disabled students helpline

This is, of course, lots more to consider such as insurance, helping them become independent (cooking/budget, etc), accommodation etc. If anyone has any support information on going to University then I would really appreciate it – disability or non-disability related. And if you or your child are thinking about it then the very best of luck to them.

This is NOT a sponsored post.

disability fairness

Disability Fairness: What’s Fair about Disability?

  disability fairness

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.

Disability fairness

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?!

Disabled in nativity

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?

disability fairness play matters

 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?

Rubbish parenting my lazy teen with aspergers #thesensoryseeker

Rubbish Parenting – Stop Blaming the Disability

Rubbish parenting stop blaming the disability

I am sick to the back teeth of every parent who considers their child to have special needs/be disabled (whatever you want to call it) having their parenting called into question. How many people have been told, why not try this course to help manage your child’s behaviour – when they just mean you have rubbish parenting? This seems to happen before, during and after a diagnosis process – in my small experience anyway.

Rubbish parenting my lazy teen with aspergers #thesensoryseeker

Maybe I’m just insecure, always feeling judged, that we have rubbish parenting, a letter once stated that “the mother fusses too much” when my oldest son’s school were justifying why they do absolutely nothing for my son’s needs. His IEPs always said he should achieve this grade or that – which was no problem for him and didn’t need working on. Trying to get him sorted in extracurricular activity, and socialising they just really refused to help with.

Rubbish Parenting stopping him being Independent

“What I do not want to do is get him the placement exclusively on my own, it is important that he contributes to the process, as at the end of the day, when he leaves school, I will not be around!” This is the response we got when we could not find any suitable placements for work experience. He never said but basically implied it was down to rubbish parenting that we had not made him independent enough and that he just expected everyone to do everything for him. “We had a brief look the other lunch time and there seemed to a lot”. No there were a lot of companies that offered to fix computers but not to write computer games – not really the same thing. I am really upset that it is suggested that my son is lazy (oh yeah you can see that from his grades can’t you) rather than the fact that he has a diagnosed recognised social communication problem (Aspergers). I did repeatedly go into school and question his ridiculous IEPs – you know what happened? They did social stories. They didn’t work. They got a new SENCo – then they tried Social stories. And if I pushed too much they would make me feel like it was my rubbish parenting – and actually my son was just a normal, lazy teen.

Rubbish parenting and blaming it on the disability #thesenoryseeker

Maybe they are right, I really don’t know what is teenage behaviour and what is his disability, but I DO know that he is far from lazy. If it is clear to him what he has to do then he does it. Will this ignoring the problem make it go away? Does ignoring cure Aspergers? Will he suddenly know how to communicate socially? But then I do hope they are right, that it is just down to rubbish parenting, because one day he will move out of home, and away from me, and my “fussiness” and everything will be alright! I do want you to come and all agree that it is rubbish parenting that I’m fussing: That I am just not letting my boy grow up. This is normal and what most teenage parents go through. Please tell me I’m fussing.

Because if not, what is the alternative? That my son’s needs are continuously ignored? What will his future hold? Funny as he has done so well lately, and when applying for his first job I was told I should have helped him more!!! Luckily he has been given a second chance with that, and you know what even if it means it is rubbish parenting I am going to help him.