What doesn’t kill us makes us stronger!

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Warning, the picture of the loo roll indicates the amount of crap mentioned within this one post! Seriously continue reading and you will see!

So, the return to school is upon us, we hit the high Street for uniform, stock the fridge with packed lunch, try to re-establish the already crap bedtime routine and pray the kids will get up in the mornings.

I’ve never had the privilege of looking forward to the kids returning to the land of learning so that I, ‘Mummy’ can over indulge on cbebbies with little H. I always kinda preferred the holidays over the term times, and never acquired that feeling that many do, “I can’t wait for these kids to return to school in September!” When the Little man was in his old school he was normally excluded within a few hours of returning. My daughter has no problems in school, but then again she isn’t expected just to fit in! That’s right, my daughter doesn’t have Aspergers syndrome which means she is welcomed on school trips and is given a part in the Christmas play. I don’t need to wipe her tears and try to find the answers as to why she isn’t allowed to join in with her peers or why she is being taught in isolation as opposed to in the class-room alongside her peers. Its simple… My daughter has not been discriminated against for being “different” she’s one of the lucky one’s!

Little man wasn’t, he sadly went through all the above and more, that was in-till he moved to a school especially for those with autism and aspergers. He only started the independent special school a month prior to the school holidays, yet in that short space of time, things were amazingly different, so much so, I cannot find the appropriate words to describe this situation any better. Normally by this time of the month dread has started to set in. I find myself becoming depressed with what’s to come, a pool of sick lay deep in  my stomach waiting to be stirred! Yes, I’ve done all that rubbish of trying to remain positive, “LOOK AT ME I’M SO POSITIVE, I MAYBE SMILING LIKE A CHESHIRE CAT ON THE OUTSIDE BUT GOD I’M HOWLING ON THE INSIDE”. When you have been crapped on as many times as we have its pretty hard not to lose all hope.

That’s why it’s strange, I haven’t got that feeling of dread, that deep Pit of sickness in the bottom of my stomach. Don’t get me wrong I’m thankful it’s gone yet I don’t know what to replace it with? “God at times I make so little sense, I struggle to understand myself” Surely I replace it with nothing, isn’t this the overall beauty of it, the beauty of no worries? It’s been so long that I’m totally lost when it comes to being free from such dread, seriously, to many I’m I may even sound as though I’m missing the drama! Well, I’m not, I promise you that! 

It’s not just the removal of the dread surrounding the return to school, it’s all of it, the whole stinking lot of it! You see, you spend so long fighting, it becomes a normality! You don’t see light at the end of the tunnel, it takes over your life… the daily calls to collect your child, the letters you write, appeals and representations you make on their behalf. You give it all you have, wishing for an end, a break from the grilling daily fight, then your hard work pays off! Your child gets into that special school, yet when they do… the massive hit of relieve you waited for doesn’t bowl you over quite like you expected it too. Instead you find that you have gone into some kind of shock, you’re unable to settle and adjust because I guess you’re waiting for someone to take it all away.

I know we are not completely home, safe and dry, (can you every be when your child has special educational need, living amongst a system obsessed with saving money regardless of how its achieved). Yes, anything can happen! Yet this is the same with everything in life, meaning taking each day as it comes, enjoying everyday that don’t bring with it a pile of stinking poop.

Friday, last week I got that bit of paper I’ve worked so dam bloody hard to get. Yes, It has been placed in my hands previous, only to be given straight back with the words, “Stick it where the sun don’t shine” attached to both Little man’s proposed and final statements of Special educational needs.

Gosh, I was fast becoming an expert on the use of fluffy wording that gave the LEA a, “Get out of jail free card” 

Excepting such an insult would make the whole deliberating experience to that point, completely and utterly worthless. 

Believe me, having a statement that states nothing other then good old fashioned common sense, was not the kind of statement that would see my child’s special educational needs met. I had constantly heard that it was my duty as a parent to ensure my child’s attendance at school during the height of Little man’s school refusal! So, wasn’t it my duty as his parent to ensure that when he did get there he was happy, cared for, involved, treated respectful, made to fill his contribution to the school along with his individual opinions were valued?

Such question pushed me to where we are today, where I was last Friday!

It had been pretty quite for some time (I hadn’t heard a peep out of the LEA) Little man may have already gain the place we so furiously fought for, yet his statement still remained a sheet of paper not even worthy as bog roll! For this reason the tribunal was still scheduled for the 26th of September.

It remained in the hands of the Gods (well, at times I’m sure they think they are)! Three independent reports, detailing a wealth of information! These were reports so detailed and lengthily that I myself discovered thinks about my child causing me to both cry and smile. The whole tiresome experience of trying to get your child a statement of SEN sends your head spinning in a total mass of emotions.

I opened the email from my solicitor and read how she had received the copy of a proposed amended statement, that was sent to me (Well, I’m still waiting) However not to freight, with the request for a forward the solicitor sent me a copy via email that I so eagerly downloaded and with bated breathe, I opened the attachment! 

There in black and white was every amendment requested, no corners cut, no compromising! Was the LEA all out of compromises? Were they beginning to have enough of the battle, just as I had done all so long ago? Surely they weren’t providing my little man with the ultimate gift available to them… A package of provision to unsure my sons needs where met, like he so greatly deserved, like you or I?

YES, YES, BLOODY YES…….

I looked over in his direction and let out a yelp, followed by a, “WE DID IT BABY!”

He smiles, high five’s me then sits down to continue his game. He was happy for his mum was happy, however he could not fully understand the extent of relieve that the battle being fought was finally over! He had no clue to what might have been!

And do you know what? That was just the way I liked it!

I never want to fight a fight like this again, yet I know that there will be times I will need to fight my sons corner, whether it relates to his educational or social needs, well, as for the remainder of his childhood anyway! (I’m pretty sure he will be somewhat of a great advocate for himself when his older!)

For now I’ll try my hardest to adjust back into a life of normality (what ever that maybe)! I’ll take each day as it comes, enjoying every school performance that both my children take part in. I’ll roll about in the comfort that he now feels that he belongs .

I’ll channel my desire to help others in that same position, into my work as a voluntary tribunal support adviser, I’ll spend more them on my blog indulging my passion to write and throw myself back into my passion for art!

I’ll discover, learn and watch my new interest in photography evolve 

I wont miss a single moment of my toddlers amazing milestones!

I’ll just try my best to be me again

Only a much improved vision

I can officially confirm

“What doesn’t kill us can only make us stronger!”

Related articles

• Feeling a tad proud (aspergersinfo.wordpress.com)
• Taking the Special out of Special Education (ontarioeducation.wordpress.com)
• Rwanda makes gains in all-inclusive education (guardian.co.uk)

A love hate relationship

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

The fight to get it right

It’s not easy being a parent, the choices we are faced with can be overly overwhelming. For our choices impact greatly on our children. We are forever making decisions for them, sometimes it’s done with ease… What to dress them in as little ones, what to get them for Christmas & birthdays, what time is bedtime and how much pocket money to allocate. Other times these decisions are far bigger… choosing a doctor, dentist, vaccinate or not vaccinate, school placement, diet, when to start increasing independence… Although many parents find these decision hard, having to make them for a child with AS or ASD is daunting. Choosing the right dentist for example… If you get this wrong and the dentist is somewhat ignorant when it comes to AS/ASD the impact on the child can be huge… a display of public meltdowns everytime they have a checkup isn’t desired. having experience on parenting a child both on and off the spectrum has highlighted the difference my decisions can have on the children.

I now hold this paper in my hand that is full of decisions that would make up my child’s educational further. Yet these were decisions that were not made by me but someone who had never even met my child but was based on the observations made by others and the conclusions they drew. Some of this came from doctors who may not know us personally but on a professional basis for sometime, others were educational professionals who to be honest don’t really know him at all despite his existence at his previous mainstream school for the past five years, the EP who had only meet him the once and an AWO who had always considered it her lifes mission to prosecute me for non school attendance instead of looking at the “whole” picture (how helpful when your little aspie is ripping your hair out from the roots as u try and get him out the street door to go to school!) Then you have the outreach workers who have met him once or twice and despite giving such good advice u still feel a tad concerned as your the parent and it is out your control. The only chance I had to voice my concerns was through the parental advice I would give that I was sure to make both detailed and impactful, not missing a point… Fifteen, A4 pages is a detailed report that I hoped would make some impact.

For all those who have not yet gathered what the hell I’m yabbering on about.The paper I am referring to was the paper so many families fight so hard to hold but are never given that chance. It was little mans proposed statement of special educational needs… and to be 100% honest it was mostly a load of rubbish!!

I’m not no blonde dizzy bimbo who has a head full of air, I’m also no Einstein … but this statement was ignominious in it’s current form. Yes it could be used to access a “special school” but in terms of providing him with support it was useless, the provisions were largely made up from common sense! and though many teachers need to be told this in way of a statement, there was so much more they should have provided! Did I expect anything less? “No!” yet it would have been great to be surprised, but hay we can dream!

So what was the problem? Did it not describe all little mans needs in part 2, was the description not detailed so as not to leave any doubt to what his needs/difficulties were, did the objectives in part 3 not cover all his current needs, did the provision in part 3 not meet the needs of the objectives and provide provision for every difficulty listed in part 2 or was the provision not specific and quantified leaving no room for doubt at who would provide it, monitor it, how long it would be given (hours per week) and how often he would receive it? Maybe it was the use of wolly fluffy words like: “reguler, access to, opportunities, encourged to” that were my problem?

Funny enough it was all the above!!

Yes, every possible issue was an issue! The appendices was filled with advice from those I mentioned above & funny enough a huge proportion of this advice was actually good. His own senco had however wrote hers in a way that was considered by myself as pure ignorance (she just seemed to make him out like he was a brat) however his behaviour outreach teacher gave a fantastic report and great advice. Reading it back today it’s clear to see that regardless of her only having known little man four or five months, she “got it” she wasn’t a specialist autism teacher but at times I wondered. She was in fact an outreach from the PRU the school tried to place little man in (you know the one that had that who “lock down” style going on) The special schools outreach teacher wrote a reasonably good report which given that they had only observed him the once was pretty good (thing was the school she was based later said they could not meet little mans needs when we tried obtaining an emergency placement) the communications and outreach (ASD “specific” outreach team) are always super and it showed in there report. AWO “yep that’s attendance welfare officer to you and me” wrote half a page that just consisted of his attendance issues and not much else ( no surpises there then) As for the SALT well, I think obtaining a report from 2008 isn’t much use to anyone…. The fact that the school attached his ADOS report (autistic dignostic obsevation schedule) that was carried out by a ASD specialist SALT in 2009 as part of their evidence attached to their advice, the LEA still igonored it and chose to go with the 2008 report. This just shows how sly these foxes are. It’s my understanding the LEA are meant to be following the Cop (code of practice) they should therefore obtain reports and advice given on his most current difficulties, if they want to use a report that was taken from a SALT who visited the school when little man had little issues… was somewhat aloof at the time and just happily faded into the background. Just because it stated he had no SAL problems then I’m inclined to insist they also use reports from 2007 detailing traits that warrant no provision today but did then. These traits are no longer an issue as they have been replaced by others. my point is… Do u think the LEA would have used the report if it indicated high cost provision should be made? The ADOS was clearly backed up by all additional advice including the EP so it was only reasonable it was used instead. If not another SAL assessment should have been ordered. As for the EP report I was surprised… I had heard the horror stories regarding them writing reports that were not very beneficial due to the fact they were employed by those wanting to draw out a budget statement. She gave a pretty good report and picked up on problems such as his sensory sensitivities and literal understanding of language.

Despite the fact most of the reports reflected one another the LEA choose to leave difficulties unlisted, or just including them in part 2 only to not provide for them in part 3. I love how the parental view only gets a small dedicated sections comprising of two or three short sentences… Yet we are the best professionals to ask when it comes to our children, no one knows our child better then it’s parents, no matter how much they think they do!

Well, I’ve spent a little short of two long weeks making sure these “decisions” that were made with little control from me are amended by writing my objections and suggested amendments. I also made my prefernce for a school placement in part 4. Its fair to say that this was the hardest report I’ve ever written… I cried, got frustrated, laughed like a loony, feel asleep, swore out loud and researched a stack of reading of reading material while I typed… It was one emotional process because it is an important one, and having taken this long to get here it had to be right

If statement were for sale, this statement could be brought at our local Tesco store (British supermarket for those more far a shore) you would find the statement on the economy shelf displaying the words Tesco Value range or if sold in sainsbury your looking at the basics section.

Money, it all boils down to money… To them the statement has to be in line with the use of the LEAs efficient resources!
To us that means your screwed because the LEA are tight fisted numb nuts preferring funds to go to the most needy causes like student artist who receive a fat hand out so the LEA can display “pointless ugly art” around the borough.

So here’s my advice to any parent just starting their journey…
… Get ready for the ride of your life. Walking into the world of SEN is like riding the worlds tallest fastest bumpiest never ending rollercoaster… Once your on it’s pretty hard to get off!