The stepping stones to independence

As my child takes another huge step in his life’s journey I feel my heart burst with pride.

Little man has come so far in such little time. If you asked me 2 years ago if I thought he would be at the place he is now, my answer would have been, “probably not” considering how bad things were once upon a time, this fact alone should be a comfort for any parent who are now stood in the shoes I once stood in.

We have some incredibly tiresome days, ones filled with rage and anger, others filled with anxiety and disappear.

Yet, one needs to understand that like anything in life, we take the rough with the smooth. Ok, at 4am when his well past that tired stage when his running around pretending to be a wrestler, crashing and banging as he repeatedly throws himself off the backs of the sofas, before gathering up speed and darting from one wall to another, roaring and shouting as he mimics those overgrown kids that consider themselves men on WWE, I do feel a rather sorry for myself, the siblings and even our poor neighbours.

Evenly the smooth part does come through, and although it normally last far shorter than that of the rough… It’s a delightful place to find yourself in.

Despite the issue we’ve been experiencing with Little mans reluctance to eat a packed lunch as opposed to something he can heat in the school microwave (this is no longer allowed) His still coping outstandingly well with all these major changes that have taken place.

I can slowly see the pieces coming together. His growing up and with it his learning the skills of independence needed to go with it. Yes, I worry he will have difficulties in adult life, but then again what mother doesn’t? Finally… I feel progress is being made and It’s this progress that fills me with hope for my little man’s future.

Here’s to another great week, next week…. I’m told positiveness is the key and I hope that this key opens many doors for little man.

The Transition To Secondary School For A Child With Aspergers Syndrome

So, the time finally came, Little man’s return to school as a secondary pupil.

I noticed that in the run-up to the big day, Little man’s anxiety levels rose and as a result we did have a rather difficult last few weeks of the holidays.

I was dreading the whole “getting him up in the mornings” scenario. He tends to be the ultimate nightmare to wake, given he usually doesn’t go to sleep till the small hours. Unless you experience such sleepless nights paired with early mornings, you can only but imagine the utter tiredness his experiencing. Consequently I do understand… After all someone needs to keep a watchful eye on him over night.

I’ve tried my best to maintain his bedtime routine during the holidays (that’s if you can really call it a routine)! He usually goes to his room and just doesn’t shut down. His like a long life battery. Melatonin isn’t something we rate highly, and even through the slow releasing type sometimes has a small effect every now and then, it’s far from a reliable answer to the problem. On a high note, little man is more wary of the problem and understands that bit more that it’s this situation leaving him feeling crap throughout the day. He now gets rather upset when struggling to fall asleep and by 3am his almost certainly at the point of tears. When it isn’t a school day and his little eyes haven’t closed till 4am, I’m tempted to leave him to sleep throughout the day. However, as one would expect, this is no solution! Things just become a million times harder in the long run.

So, back to my original point… I was dreading getting the Little man up and ready for school. The nasty insults that fly out of his tired mouth are nothing… I’m used to these! It’s just the whole destruction it causes to the morning. He will often refuse to wash for sensory reasons and once he has I’m faced with the struggle of convincing him to dress. The taxi can be sat outside while the escort is stood at the door and he will still be in his pants. Not ideal but something you get used to.

His first day back was in-fact yesterday (5th September 2012) and to my utter surprise, the morning wasn’t as bad as expected. He almost seemed excited about his day. Tuesday I took little man and the tiny tot to Drayton Manor Theme park and zoo. It’s the home of Thomas Land and we were there to review a new Thomas film just released on DVD, and of course the park itself. Little man had an awesome day and didn’t experience a single meltdown while at the park (in the car was a different story but given it’s a 3hr drive each way, he can be forgiven). I think it was a combination of the long car Journey and the whole day spent at the park that resulted in him actually sleeping before midnight.

He woke Wednesday morning with a somewhat positive outlook towards the day ahead and given it was his first day back, this left me astounded. The fact that Little man had spent the last two weeks of the last term before the summer holidays integrating from the primary building into the secondary department, had obviously helped him a great deal. Now he was better prepared mentally! Yes their was lots of anxiety still, but at least he wasn’t just stepping into the unknown. Anxiety seems to be a pretty common trait for those with Aspergers Syndrome and for me It’s one of the hardest issues to tackle. It’s both heartbreaking and worrying seeing your young child so stressed, especially when the cause is beyond your control.

Little man had his new stationary that was kindly given to him by STABILO all packed and ready and his lunch loaded into his lunch bag when the escort knocked at 8.30 am. He was quite literally ready to go as soon as she arrived. I’m guessing this was something of a surprise to his escort… But a pleasant one all the same!

Throughout the morning I received no emails or calls from the school highlighting any concerns. Any parent can tell you, especially those of a child with SEN, this is always a lovely sign that things are going well.

Come afternoon however, I did receive an email from the class teacher! Luckily this wasn’t to report some challenging behaviour or other equally concerning matter! It was just in-order to let me know that as from the next day, little man wouldn’t be allowed to bring in his chicken burger as they will no longer be heating his food in the microwave! Little man’s school has such a small number of pupils that school dinners are not practical, and even if they were, I’m guessing so little children would opt to have them. Little man wouldn’t even entertain the prospect of even trying school dinners during his time spent at his old mainstream primary school. This wasn’t a huge concern as living 2 minutes away, I was able to collect him, feed him, then drop him back.

Little man will not touch a packed lunch regardless of what’s in it. He may eat such items at home but as soon as your packing it, his not touching it. Warm wrapped sandwiches, warm yogurts, and warm apple juice don’t appeal. Putting it in the fridge doesn’t seem to make much difference, the issue that it was put into the box more than an hour ago seems to be a big no-no for him.

It was decided last term that he could bring a chicken burger and heat it up in school. He has no cheese, sauce, or anything else. Just a flame grilled (not breaded) piece of chicken in a bun. He also has lots of fruit and a drink. His concentration levels were therefore reported to be better in the afternoon as he was finally eating, and I was pleased that I was no longer being presented with an untouched lunchbox at 4pm… I couldn’t afford to keep this up!

The new teacher has stated he needs a healthier lunch and I’m lost at what I’m going to do. Don’t get me wrong, I understand the school have their reasons and I’m in no way stating they are in the wrong, I’m just at logger heads at what to do! Today little man arrived home with an untouched lunchbox. I don’t even thing he touched his drink.

Little man’s untouched packed lunch.

He was really upset yesterday. Having received the email I had replied stating that I wished the school to inform him of this change, I knew he wouldn’t be happy and I didn’t want him thinking it was my doing. Of course when he arrived home screaming and yelling, I had to support the school in-order to be consistent! He would otherwise struggle more with this decision and a challenging child at school was the last thing I wanted. However he did cry on his return yesterday, he protested that he had done all his work, tried his best and behaved appropriately! He felt as if it was some type of punishment (as always I blame the old school for such a way of thinking)!

We obviously had some difficulties this morning but despite his upset and empty tummy, I’ve received an email from his teacher alerting me to the fact he has had a really good day. His reported to be doing great in secondary and is settling into the routine better than expected. She also informed me that they had a chat about lunch and suggested maybe taking a flask of soup or pasta. We will try this as on his return today his eaten half the contents of the fridge which for me is much more unhealthy than the burger.

So… There it is, an update of little mans first few days as a child with Aspergers attending secondary school at an independent special school. How I’m relived to have gotten him out of the mainstream education sector in time! I’m convinced that this post would have contained content that displayed nothing but heartache if I hadn’t!

The day my boy got his smile back.

I sat in the school hall watching the school nativity all the children in each year combine to create one marvellous Christmas spectacle! So, why was I sat with a tear in my eye? My daughter looked so beautiful up there, and god I was proud, off course I was! Though this wasn’t a tear of joy, something was still missing and that something was my son! As I watched his sister and the rest of the schools over excited children take part in a glowing performance,my eldest child, ‘Little man’ was sat at home, restricted from all participation! Why? Well, he hadn’t injured himself, he wasn’t hit by a sudden dose of stage fright, he was told No! Why? Because his school thought of him as a liability not a child, not a child with feelings, not a child at all!

There were lots of why’s! Some coming from myself directed at a head teacher and a SENCO who quite honestly didn’t give a shit! The why’s from Little man directed at myself, a mother without the heart to be truthful! Yet deep down he knew, I know he did!

You may have the word why running through your mind right now as you read this! You maybe asking, “Why I’m even writing this?”

Yes, the above situation wasn’t yesterday, it was just one of many crawl blows thrown at my child at the end of last year. The example above took place in December 2010.

Now, I know I shouldn’t dwell on the past, and I’m not (well, not really). It’s hard to forget and I doubt we ever will, though the reason it was actually brought to the front of my mind was for reasons of happiness and excitement, not sadness.

Yes, now in 2011 and finally in a school that understands him, I finally got to see my little man take part in a whole school activity.

This time as I entered my son’s school there was no stares or whispers. I spoke with fellow parents unworried about their response when they would discover who my child was. This is a feeling I’ve waited and waited for, now I finally have it!

It was the celebration of the harvest festival and parents were invited into school for a special assembly. Gosh I was excited, despite the fact I had literally had not a wink of sleep. With this in mind I headed off upstairs to chill for a bit. Little H was with his father so that left me a bit of mummy time. Running the hot water into the bath tube the air was filled with the scent of Radox relaxing bath salts, “This is the life” I thought as I slowly lowered a leg in the tub!

Ring… ring… ring… “Bloody typical” I shouted to myself aloud as I almost slipped and broke my neck as I frantically dashed for my mobile located on my bedside table.

“Hello” I spouted in a somewhat breathless tone (which couldn’t of sounded great) especially on discovering it was in-fact Little mans school who thankfully put me at ease instantly by stated “Don’t worry, there is nothing to worry about” Turns out the Little man has actually left his lunch at home, well, that or in his transport (the taxi he takes to school of a morning) His school don’t currently serve school dinners. This is mainly due to how new the school is and the fact there really is little point employing staff and serving food for under 20 kids (not like the little man will agree to eat it any how).

This only meant one thing! Mum would have to deliver that lunch asap! First I had to unearth it, I couldn’t actually recall seeing it since he left at 8.30 am that morning. I searched the house like a mad woman and at 11.50 and the school being some distance away (one train and a bus kind of distance) I began to worry when I still couldn’t find it! It wasn’t a case of just throw together another one, believe it or not I buy the stuff fresh each morning in some kind of hope he will eat it, so in-order to do so I’d need a shop!

As I darted out the door, on the mission for lunch something caught my eye! Surely not? Hang on…. No,… It only bloody is! There sat his Chelsea FC lunch box on top of the wheely bin. Well, I agree it’s not the most pleasant place to keep your lunch but with the clock ticking, I came to the conclusion, “It wasn’t actually in the bin! Would he actually need to know?” I guess not!

I finally made it to the school, red-faced and paranoid that I didn’t smell like the aroma of Radox bath salts, and more like a sweating scum-bag but given the fact no one smiled and moved away, I came to the conclusion it was my lack of sleep making me think this way (after all, it’s not like I hadn’t washed or something)!

The assembly wouldn’t start till 1.30 and it was half past midday and without a car and feeling like I was in the middle off nowhere I went outside sat on what was quite a pleasant little bench, indulged in my nasty but pleasurable habit of puffing a cigarette while scrolling trough my twitter timeline, engaging in far to many conversations to remain sane before going back inside to find my little man waiting for me in the reception-area.

“Mum, I’m not having a great day” he told me! Apparently no one was! The teacher described it as one of those days where the children all seem to be experiencing some kind of upset. Let’s not forget these children all have an autism spectrum condition, all face a range of difficulties and the smallest things can cause problems. Chatting with my little man it would seem he was excited yet a little nervous about his piece that he had offered to read in the assembly. My little man wanted to do the reading and was adamant. We read it together and he read it perfect! Confidence was the issue here something that had become smashed over the years.

As Little man went off to get ready I got to say hello to the very lovely Anna Kennedy. For those of you who don’t know who Ann is, I’ll enlighten you!

Anna isn’t only the founder of little mans independent special school for children with autism and aspergers, she’s also a parent of two children on the spectrum who felt her only option left to get her boys into a school was to open one herself. This wasn’t little man’s current school but another called ‘Hillingdon Manor’ in Middlesex and this all happened back in the nineties. Baston house (Little man’s school) is a school that Anna has open more recently. Anna has since established a bit of a name for herself as an inspirational advocate for autism and is also now a very successful business woman. I for one agree that Anna is inspirational, actually she’s a breath of fresh air to the autism community and I couldn’t be happier to have my child in a school that has been made possible by this very woman. My guess is many parents feel this gratefulness that I am currently feeling as I write this down.

Having spoken to Anna for some time (way before little man started school) on networks such as twitter and facebook (Little man also appeared on a news report on bullying that Anna organised) it was lovely to finally meet her in person.

As I sat In the hall waiting for the children’s performance I felt proud that my son was a part of it all. He ran around and his anxiety was a tad increased, plus the fact I was there meant he become a little bit of a terror, but so did a few of the children. What was magical was the fact no one made an issue about it, if the children ran from their chairs or dashed off behind the stage curtains they were encouraged to come back to their seats in a clam and unthreatening manner. Not one teacher raised their voice, not one!

The vicar from the local church came to speak about the occassion in which the children were celebrating. The table was covered in food that the children had donated. I had to laugh when the vicar stated, “Look at all this lovely food you all brought” only for one young man to shout out, “Actually, I brought in most of it” What a classic!

The vicar told a story to symbolise what the true meaning was of the Harvest festival and the children did shout out some pretty random things (little man more than anyone else, I think) Any other school he would have been reprimanded for such behaviour! They all put up their hands but just could not retain the urge to state what it was they wanted to say, this however was fine!

When it came to the reading Little man and a few others gathered at the stage. All giggled and in turn each took the microphone and read aloud (beautifully I must add)! Little man was last and as he took the mic he said one word and then froze. He turned to his TA and stated “I can’t do it, please do it” I knew he could read it, after all I heard him not half an hour before when we practised. My son hadn’t ever been given such a chance till now and his confidence just wasn’t there! Then something beautiful happened! Two of the staff, including his teaching assistant (who he is most keen on) and the other boys who had previously read came together with little man and read the poem with him. There was no laughing at him, no nasty remarks and no huff from the teacher, just pure encouragement!

I didn’t only write this post to express my delight at the situation we are now in, and although I wanted to share such delight with you all, I have another more important reason!

“When life seems like it cannot get much worse and you’re in the height of your long fought out battle to get your child what they did! When you think there really is no light at the end of that very long tunnel, please don’t give up, just remember this post!”

Those of you that take your child to school everyday and collect them without a hiccup, you should never take such straightforwardness for granted… You really don’t know how lucky you are!

Thank you to everyone at Baston house for giving me hope and giving my child back his smile, the greatest gift of all.

Related articles

• Teaching Teachers About Autism (psychologytoday.com)
• Autism Reality Check: Huffington Post Now Misrepresents Autism Disorders (autisminnb.blogspot.com)
• Where’s the support for autistic young people? (guardian.co.uk)