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

Blink and I’ll sleep for a week!

Life right now is nothing short of manic. There’s simply no other word to describe it!

April has been one incredibly overwhelming month and we are just past the half-way mark.

I feel I’ve been put through my paces and had every emotion in my body put to the test. Some days I’ve been in fighting mode, others I’ve been so exhausted I’ve just wanted to crawl into my bed, hide away from the world while indulging in some longed for sleep. 

With each passing day I’m one step closer to hearing my little man’s fate, and no matter how much I try to prepare myself, I somehow feel that we’re hanging from a cliff top ready to drop!

Little man currently has no school placement for the whole of our borough and those that boarder us have taken one look at my sons papers & decided that they don’t have a placement available or lack the resources needed in-order to meet his level of need. 

Each day his left without a school is one day closer to him never going back! This shameful situation has ultimately made him regress, causing his social skills to decrease, and his dislike towards school to heighten. My ten year old son is now so anxious at the prospect that he will one day be expected to step foot in side a school along side other children that he will now require a tremendous amount of support when that day comes!

Whoever said that children on the higher end of the autism spectrum, have less complex needs were delusional! 

Just because my son has a reasonably good vocabulary and met most of his milestones doesn’t make his needs any less complex. However I don’t need to go into that, I don’t have to try and prove such a fact anymore, the system finally took note, it just did so a little later then needed!

This past year or so, my family has been left dangling from a string, I often ask god when that string will break.  April has come around so quickly, this time last year we were at the beginning of the tribunal process. However this wasn’t a special educational needs appeal but sadly a disability discrimination case! At that time and for a significant time thereafter, Little man endured so much. Fixed term exclusions that subsequently occurred one after another, removal from nearly every school activity, including educational outings, school plays, Christmas assemblies , etc. He has been illegally excluded and subjected to long spurts of isolation (received 1-to-1 teaching, just him and a teaching assistant in what was known as the den), he would only attend from nine till twelfth, and was made to play in the infant playground with children of a much younger age. My little man was classified as a potential health and safety risk that was a threat to children and staff! Can you imagine how that impacted on a little boys self-esteem! In December 2010 I eventually made one of the best decisions I’ve ever made for my son, ‘ to remove him from the educational setting that was impacting hugely on his mental well-being!’  As a parent I could not stand by while he was subjected to such treatment. 

During the beginning of October 2010 at the height of the discrimination the local education authority (LEA) finally agreed to undertake a statutory assessment of Little Man’s Special educational needs that he so desperately needed! In all honesty this couldn’t have come at a more convenient time! I was quickly running out of ideas and needed my child in an educational setting with staff equipped to meet his needs. 

Believe me, I was under no illusions that this was now plain sailing… some may say I’m somewhat a pessimist but as I’ve stated once maybe twice before that I prefer the term ‘REALIST!’ And as expected the LEA didn’t wanna play fair!

In January 2011 I received the proposed statement of special educational needs but instead of providing a statement that held the potentiality to see him progress, I instead received a proposed statement that provided nothing more then, ‘GOOD OLD COMMON SENSE!’ This statement was made final in March and delivered with a covering letter explaining that the statement had only been finalised to meet time-scales and would be amended to include my suggested amendments…. YES, I’M STILL WAITING!

In February 2011 just a few days before the disability discrimination hearing we eventually came to a settlement that saw his ‘old’ primary school review its policies, train staff in disability discrimination and a formal apology was given to myself and of course little man. 

Little man is currently being educated in a library on a 1-to-1 part-time basis by a tutor his now overly attached to.

Why? Because no ‘special school‘ will offer him a place.

On the 3rd of June our appeal against parts 2, 3 and 4 of little man’s statement will be heard by the SEN first tier tribunal. I will need to prove that the one school I’ve found that can possibly meet his needs, an ‘independent special school’ should be named in part 4 of his statement. I will also need to prove that part 2 does not list all his difficulties and that part three needs amending as to provide the right provision needed for him to succeed, such as… 1-to-1 support from a learning support assistant or at least a teaching assistant, as-well as occupational (OT) and speech and language (SALT) therapy.

 

I’m thankful for the fact that I’m a trained tribunal support adviser and volunteer caseworker for the NAS. This has obviously given me a greater understanding of the SEN law and tribunal process, nevertheless emotionally it’s no easier! I’m still a parent who has had to watch her child regress. Of course I feel a certain amount of anger towards this horrid system that has allowed such a situation as ours to reach this point (let’s not forget that I’m a mother who has been taken to court twice over her child’s school attendance, no one wanting to investigate the underlying issue nor listen when I pleaded for someone/anyone to help! I guess to some prosecution was the more appealing option) However it’s this past resentment that keeps me fighting and empowers me to help others who are walking the path I’ve walked!

So here we are now in April 2011 and as mentioned it’s been incredibility pressing. I’ve had a Birthday that saw me turn twenty-nine, I’ve been busy with my volunteering duties and contracted Pneumonia which I’m only just beginning to get over! I’ve been preparing Little Man’s appeal while also going a tad insane as a result of the Easter holidays & if this wasn’t enough… MY HOUSE LOOKS LIKE IT BLEW UP!

Despite all the above there is something else that has happened these past few weeks in-which I consider to be far more significant then anything I’ve already addressed! Its something that happened within me, a realisation if you like! I’ve had my eyes opened and although I knew Little man hand significant complex needs that admittedly have been made somewhat worse due to his lack of a suitable education, I’ve got to see his difficulties and what scale these are impacting on many areas of his life. The proof that without early intervention, an understanding environment and the right support, the effect on the child with Aspergers can be detrimental. 

On the 4th and 15th of April Little man underwent two independent assessment. One was carried out at our home by a fantastic independent psychologist (EP) who had her work cut out for her, commenting right from the start that Little man was a hard child to assess! The second assessment was carried out in central London just off Harley St, but this time by an independent speech and Language therapist (SALT) who again was a pleasure to met. Both assessments were carried out for the purpose of the tribunal. I needed independent assessments in order to gain reports detailing Little mans current difficulties and suggested provision to be added to part 2 and three of his statement.

On the 4th of April I sat and watched him struggle to cope with the assessment process that was carried out by the EP, his concentration was noticeably low and he found it near on impossible to focus on anything he was given! His anxiety levels were scoring. The Ep worked so hard with him and after four long hours she managed to gather enough information to write her report. 

On Friday we hit Central London for Little mans SALT assessment but even in a different setting from the home Little man found it hard to participate. With much persistence and an offer of a chocolate egg from the therapist we eventually got some off the testing done. I had of course realised that an SALT programme would be needed, but sat there listening to him try to make sentences with the inclusion of a word given by the therapist while looking at a picture in a book. It proved that despite his vocalness, his ability to put what he sees into words is somewhat a struggle for him. His literal understanding was also very apparent on the day!

Both therapists mentioned the possibility of an underlying condition which of course was ADHD and the EP is also pretty sure his dyslexic ( however she was in agreement that his mathematical skills are great) It was also recommended by both that little man undergoes an independent occupational therapy assessment (OT) due to concerns with both his fine and gross motor skills. I’ve also stated with certain task Little Man is like an elephant playing football.

After the SALT assessment we spent the day indulging in Little mans special interest (transport) Visiting London land marks by train, tube and bus. We visited Greenwich market where Little man met a magician which bowled him over before spotting a vintage model bus which after a little begging I reluctantly brought him. We hung out at the O2, visited Canary Wholf (that he didn’t enjoy and got the message across by bending his body into a ball and screaming that the tallest building in London was falling on-top off him! Well, that’s a post for another day) We also took the clipper (fast river boat) along the River Thames. He had such a blast and he smiled almost the entire day, with not one meltdown in sight!

 As I sat on the Dock-lands light rail (Yes we commuted on many types of transport that day!) I watched him shuffle awkwardly when another child sat by. He was obvious to the battle that lie head and maybe it was better that way!   

picture of  Little Man and Mr Magic

My little man, is just that little! His a ten year old boy and it’s not to late to give him what he needs! I hope that the professionals within the LEA and those employed by such a service read this and realise the effects their decisions, treatment and all to often delays have on the child and their family as a whole. Yes it’s your job, but this is mine, “to see that my child gets what he needs, is given the same opportunities as his peers and gets the adequate education he and so many others like him are entitled to” 

“Yep, you may not like it ‘LEA’ but this mothers on a mission!!”

MASSIVE THANK YOU TO EVERYONE WHO HAS NOMINATED THE BLOG FOR A MAD 2011 BLOG AWARD. THE BLOG HAS BEEN NOMINATED IN NOT ONE BUT FOUR CATEGORIES!

SO SENDING YOU ALL A MASSIVE VIRTUAL HUG FROM MYSELF AND THE LITTLE MAN TO SAY THANK YOU, YOUR TRUELY THE MOST WONDERFUL READERS!

If you enjoy reading the blog, ‘A boy with Asperger’s’ then how about nominating us for a Mad 2011 blog award. I’m nominated in the categories most inspiring blog, best blog writer, best family blog and blogger of the year. Please visit the Mads and help me and the little man grab ourselves a fantastic award. I’m secretly  hoping to reach the final in the most inspiring category 🙂 To help me get that little bit closer click the image below. Stage 1 requires you to nominate a blogger of the year (Full ULR required… aspergersinfo.wordpress.com if you fancy  nominating me for that) Then stage two list all 15 categories, just scroll down to ‘Most inspiring blog” and enter the full url ‘aspergersinfo.wordpress.com’ Feel free to nominate the blog in as many categories you see fit… ‘I’m cheeky but keen!’

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