Tag Archives: volunteer

A little bit of inspiration

23 Jul

As I sit here happily, typing while listening to some Mary J. Blige, I think back to a time when things weren’t so pretty!

This time last year I saw myself battling and fighting for my sons rights. I was at the start of a discrimination claim against my Sons old mainstream primary school and was still, like thousands of others desperately trying to obtain a statement of special educational needs so my son would get the support needed in a school better suited to his complex needs. These two battles pushed me to the core, not only was I becoming stressed both physically and mentally, so was my son. I knew I couldn’t give up, not when my son was being treated like an outsider and even faced the prospect of permanent exclusion. He was never allowed on trips or was hidden away during inspections or when the parents of prospective pupils toured the school. He was highly misunderstood and it was slowly killing me! I was never quit prepared for what it would take to get myself through them hard and deliberating days. I had heard some talk about the battles fought to obtain these statements, get children into schools that catered to their needs, yet you never quite realise the true extent of what it takes out of you till your neck high in it! Honestly, I cannot begin to put this into words, those parents of children with SEN (special educational needs) will know what I mean when I say, “It could have quite possibly caused me to experience a full on mental break down! There were tears, shit… far to many tears, appointments, meetings, exclusions and phone calls, over and over again. Some days I was close so very, very close to giving up! Yes, I would often vacillate between giving up or pushing on! I remember all those voices, the ones that told me, “Don’t give up Claire, Its worth it in the end.” Yet it made no difference to me then! That light at the end of the tunnel was nowhere in sight.

It’s one year later and my children have just broken up from school! Unlike last year, I don’t dread the day my son returns, not now he will be returning to a better place. Yes, as many know already, Little man is in an Independent special school for children who have autism/aspergers as their primary need.

Little man spent so long isolated in mainstream, then home schooled before finally getting a great tutor. However he was still without a peer group! I really did think that it would take so much longer to settle in this new school than he actually has. He is already up one sub-level in his reading and earned himself a fantastic school report. His school have told me his a, “Great lad and a lovely boy!” For me this is amazing and almost brought me to tears. Silly… I think not! If you have ever watched your child’s education and self confidence fade away, then you will understand this feeling of joy I’m now feeling inside.

I know there are still hundreds of thousands of parents still fighting that same battle and by god do I empathise! The experience affected me in such a way that in November last year I started a voluntary role advising parents on their children’s educational rights and helping them through the tribunal process. I also started a Facebook page a few years back that now has over four thousand members, parents like me and young people on the spectrum comment daily about the lack of support received from the system. I hear our own story repeated over and over, so similar in so many ways it’s scary. I try and encourage them parents not to give up and remain strong for themselves and their child, yet I know that like me they must think, “It’s no use!” But those who have read my story over the past three years would have read some of my most testing moments, from pre diagnosis to full diagnosis, court cases brought against myself for non school attendance and the battle to bring Little mans discrimination at school to a final end. You will remember the posts that I wrote through tears at the inability to get my child what he needed,  “A Statement” and the tears I cried for once I had succeed it was hardly worth having. Then there’s the fight for an amended statement and a long search for a place in a special needs school. Gosh the sheer pain I felt discovering that every school the LEA approached just refused him, stating his needs could not be met, No one would give him a chance! The LEA would not agree to my parental choice of an independent special school, so… I fought and fought and with all my strength giving all I had, we made it… we finally made it here!

 Achievement slips and certificates replace the dreaded exclusion letters. Phone calls are made and emails are sent containing words of prise! Although his had some difficulty days, those around him understand why, they remain consistent,  they just get it! This was something I found difficult to vision a year ago. I never dreamed I would be displaying a picture of a smiling Little man at his new school, Yes that special school I fought for! I never imagined that I would proudly post a picture of all his rewards. This wasn’t because a lack of faith in my child, but a lack of faith in a system that had continually let us down.


I’m not stating we will never face a difficult moment again, and will always now remain overcautious. I’m sure we will have our ups and downs, but for once, for the first time in a long time, I feel we have achieved something amazing. My son is writing, literally putting pen to paper, something he had refused to do for a whole year! Things like these are the little things a parent of a child that has no difficulties could easily take for granted. For us these are reasons to celebrate.

Do you know how long it is since my son did a parenting and actually enjoyed it… To long! When he brought this painting home today I was incredible proud, so much so I could have burst.

I have a few reasons why I decided to bring you this post today. I of course had a desire as a mother to shout from the roof tops, “Check it out my sons star of the week at school” (the worlds of the proud mother). My second reason was to post in the hope that all my readers, the ones who are in that dark place I was in a year back, take some inspiration from it, they remember my story and think, “If she can do it, so can we!” and lastly because today is Special Saturday

I wish every single one of you the best of luck, stay strong, I’m always here to listen.

I’m no Vicky Pallord!

25 May

Warning post contains sarcasm!

I’m a mummy of three, who doesn’t currently engage in paid employment! My hobbies include sitting on my backside smoking an excessive amount of cheap brand cigarettes while indulging in the awesomeness of daytime television. (it’s my opinion that daytime telly is seriously under-rated in its entertainment value).

When my two older children are in school I generally let my eighteen month old run a muck, while I get my daily fix of Jeremy Kyle. As I trust you all, I will let you into a little secret of mine! “I sometimes keep the two older children home from school due to me failing to get my arse out of bed of a morning, that or I require them to babysit their little brother as to allow me some me time! Yes, this is mainly spent socialising and networking on Facebook.”

So, there you have it! I’m basically a total bum who has chosen to live this lavish lifestyle as opposed to getting a, what’s that word again? …Oh yes that’s it, ‘JOB’!!!!

Can you blame me? Given the toss-up between the two, that is…   A lazy day at home in the company of Jeremy Kyle, or… The long commute on an overly crowded train in a bid to get to work five mornings a week! Sorry… Jeremy wins hands down!

Yer right as if! Please tell me you do realise that the above is nothing other than an example of my twisted humour, a hard injection of sarcasm! Come on people seriously…  I’m no ‘VICKY POLLARD

It’s incredibly lamentable that a large proportion of people in today’s society, will all to often draw such conclusions of those above when it comes to unemployed mothers!

I guess it’s all to easy to assume that the mother on benefits who lives in a council house, doesn’t work because its easier this way. You only have to watch television to see some great examples of the stigma surrounding this type of mother! I’m not stating that I myself don’t laugh till my sides are sore when watching ‘Little Britain’ or ‘Balls of steel’ I’m just stating that it’s a shame that in the reality of things, people everywhere actually see us mum’s in this light!

Well, this may well be the case for some mothers, but it certainly isn’t the case for me! I imagine it isn’t for many others either!

So, do I want to work? In actual fact… I do!

I’m not only a full-time mother to three children (one on the autism spectrum), but I’m also a volunteer adviser and caseworker, supporting parents of children with autism and special educational needs through the process of the SEN tribunal in-order to get their child’s educational needs met. My duties include: Advising parents on their legal rights, helping them make an application to the tribunal, then basically guiding those that need it, through the different stages of the appeal from then on till the hearing. I can’t begin to explain how for me this is an incredibly rewarding position! Its one that doesn’t provide me with any financial gain, no form of income! That’s right! I do it because I’m passionate about helping these families overcome the battle of obtaining educational provision for their children! After all, It’s something we as a family have continually faced.

My little man was a very different child, a deeply unhappy one, up in till we removed him from mainstream in December. His currently in home tuition (supplied at the expense of the LEA), since January this year. He was continually excluded from his old school, I was called to collect him almost daily and towards the end he was taught in isolation. Lucky, Little man is set to start a trail placement at a fantastic independent autism specific school at the end of June. All goes well… The school will be named in part 4 of his statement!

So, here’s my point, I do have one I promise! I’m sure many parents of children on the spectrum will agree with me when I say, “Who would want to employ a mother or a father of an autistic child?” I’m being honest when I say, “I wouldn’t employ me!”

Constant calls from your child’s head-teacher requesting you collect your child immediately! They want you to come in just to have a word with them, or calm your child down during a meltdown! To work would be wholly unachievable! Lets state facts here guys, tell it like it is! What decent company with a boss who is well on the ball, would even consider employing a woman like me?

Come November 2011, this mum will be putting the long-term plan into action, the one that sees her go get the career she wants! Yes, this is the date I hope to start studying for my Psychology degree, “The one I couldn’t start this month as previously planed” (Not enough time, what with Jeremy Kyle and all). My study will thankful be done from home with the ‘Open University’ allowing me the flexibility to care for the children and carry on volunteering.

So, you see… I’m not no ‘Vicky Pallord’ (you couldn’t pay me to wear that shell suit)! More importantly I don’t do any of those terrible things, with the exception of them horrid cigarettes (Yes, bad habit I know!) I’m really just a mum trying to do right by her children! Even if that is under the roof of a council house!

A love hate relationship

1 May

So, today I’ve been inspired to write this post by my beautiful daughter.

You see, my little princess is feeling a little left out! I guess I haven’t really treated her like the little princess that she is just lately.

I hold my hands up, life has been far to busy and she hasn’t received quite as much attention as I would have liked to have given her. I’m not stating I’ve neglected here, “As if my little diva would let me,” I’m merely stating that we need some one-on-one time without big brother! There has been less chick flicks & girlie pampering but far to many tears.

I look at my daughter with such pride, she is this truly amazing little girl who never fails to melt my heart. Like most siblings of Children on the autism spectrum, she seems quite mature for her eight years.

Over these past few months, which I must add have been pretty emotional for all, I’ve noticed my little girl has mimicked one or two of little man’s behaviours. It doesn’t take a genius to know why she has done this, after all little man gets quite a bit of attention when displaying such behaviours. Alice-Sara (My daughter) has claimed that she can no longer use certain cutlery when eating her dinner as it makes her feel fuzzy (tactile sensitivity). She has stated that it’s to noisy in school and has gone as far as throwing a tantrum over a miner mishap that wouldn’t normally bother her. This isn’t all! More recently see seems somewhat resentful towards her brother. It’s understandable given a good degree of the time he isn’t very nice to her and is extremely hard to live with, but it’s also to do with how much time I need to spend attending to Little mans needs, both social and educational. Last week I almost died of shock when my daughter, who enjoys school refused to attend. She throw me with her claims that she hated it and certain teachers didn’t understand her, yes, something her brother has stated through sobs of tears! She insisted that in-order for her to attend I would need to write some letters and sort things out in terms of her education! She also informed me that maybe it would be better to home educate her for a a bit while things settled down, Her worlds not mine! “Guys this little girl has a stack of friends and is popular with both the pupils and the teachers. Her reports always come back glowing with nothing but prise written all over them”. I knew what this was really about! With Little man’s pending Sen tribunal due to be heard in June, I have been writing statements, emails and filling out a ton of paperwork, mainly parental information needed to form part of his independent SALT and EP assessments. I have also been doing quite a bit of casework for my role as a TSS volunteer. Alice-Sara confirmed this to be the issue when I insisted we talk about it on the way to school when she so angrily stated why storming towards the front door, “Oh, You would have done it for him.” Yes, ‘him’ meaning Little man!

Alice-Sara loves her brother, however things are not always easy for her. All brothers & sisters normally quarrel, I’m not denying that, but come to our house, I promise you its beyond ‘Normal’!

Now, it’s not always the little dude who is the one to kick things off, my daughter has become accustomed to setting him off and she’s learnt how and what buttons to press in-order to get her desired reaction. However his rigid thinking and tendency to be inflexible and controlling has either brought her to breaking point or reduced her to tears. Lately she can’t seem to breathe without it bothering him. Just a few days back little man treated the family to a night on pain-killers. My daughter needed Calpol (children’s medicine) for her headache and although I had just taken a couple of good old paracetamol for my own chronic headache, I could have done with something a tad stronger like a few handfuls of tranquillisers to knock me out for the rest of the week!

Alice-Sara decided that having tried a ‘Fish Finger’ for the first time they were actually quite yummy. When dished up and the kids sat down for dinner, little man’s eyes wondered across the table in the direction of her plate. “OH NO…”

Little man: “Mum, you’ve given Alice the wrong dinner!”

Before I could answer…

“No, she hasn’t. I like fish fingers now.” Announced Alice-Sara.

Well, what happened next wasn’t anything unexpected as it happens on a regular basis! A full-on blow up was had that consisted of him claiming that his sister shouldn’t be allowed to like fish fingers as he likes them! “She’s copying me,” and “You’re horrible mum! They were my fish-fingers!” Those statements and a load more, accompanied together with kicking doors and throwing whatever was in his reach went on for a good proportion of the night. A real head banging event!

Last spring when things were really difficult at school for Little man which resulted in some challenges at home, I began to worry for both my Little man and my daughter. His aggressive behaviour was at a point that was deeply concerning. We went on a day out accompanied by my friend who ended up having quite an eventful time and one I’m sure she wont forget for some time! It was during this day out that I decided we as a family needed to seek professional help & support! Alice-Sara was happily flying a kite on the heath following the ‘Bike & Kite’ festival we had just attended. Out of nowhere came little man who had decided it was time she stopped! He run over giving her a massive shove that saw her fall to the ground. No tears followed, she didn’t even complain, just got up bushed herself off and returned to the joy of flying her kite. In that exact moment I realised that I had just witnessed something that scared the ‘crap out of me!’ Was this the ‘Norm’ for her? Did she consider it an acceptable thing for her big brother to have done? Would this little girl ‘my little girl’ grow up thinking it was Ok to be pushed around? I don’t want my daughter to ever allow herself to be treated like this, not by anybody including that off her big brother! It was lucky that at this time I was in contact with a lady who works for the autism outreach service for our area and how lucky was I when she agreed to visit me at home and have a chat with my little princess. I also gained some good ideas on strategies that I could implement that would hopefully stop little man becoming so physically aggressive towards his sister. It took some effort but results were seen, his hitting faded out and Alice-Sara would no longer turn a blind eye to his behaviour.

Sadly these past few weeks something has changed in the little man and myself and daughter have received some unwelcome attacks as a result. He even attacked his sister on a packed train when returning from the West End because she, ‘Disrespected Transport for London’ when placing her tired little feet on the seat she was sat on.

How can I make it stop? Consistency is our only hope. Strategies that we used last year have been tried but sadly failed, however this mum is on a mission and won’t give up on finding another strategy that works!

I’m guessing a number of parents of children on the autism spectrum will agree… consistency is a ‘must’ for all children but isn’t the easiest thing to apply when dealing with the child with Aspergers and they’re challenging behaviour.

To bring this post to a close I’ve finished with something positive. After all this talk of violence I think I need to! So, besides sharing some contact details for sibling support groups that some off you may find helpful, I’ve also included this beautiful picture that I captured yesterday on the train when on our way out for the evening to see a show in the West End to celebrate the Royal Wedding. Little man has his arm around his sister who happily excepted a hug as opposed to a slap or a punch! No-one requested he gave her a hug, it’s something that you just don’t see him do! I don’t know who was more surprised me or my daughter!

The Charity Barnardo’s run a number support groups for siblings of disabled children around the country. Some groups are mixed for both the Sibling and their brother/sister with a disability, whereas others are dedicated to the sibling alone. (028) 90672366 is the contact details for the London regional office. If anyone requires the number for their area drop me a comment or contact the above number as I’m sure they will help.

Contact a Family is another organisation who cater for siblings of children with disabilities. Further info can be obtained by calling… 0808 808 3555

Mencap are happy to put people in-touch with their local sibling support group. The number for England is: 0207 4540454

Kids are an organisation which runs play, education and social initiatives for disabled children and it is suggested that siblings may also benefit from their clubs, outings and residential weekends, and can be contacted on: 020 7359 7635 email: enquiries@kids.org.uk

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