Tag Archives: Obsessive interest.

Little man writes poetry

23 Feb

I’ve been meaning to share this for a little over a week now.

Poetry seems to be a talent for many on the spectrum. I read an article recently about a girl on the spectrum who completely spoke in rhyme even if nothing was said for hours when she did speak it would always be in line so that it rhymed with the last syllable of whatever it was she had said two hours previously.

Little man sometimes answers a questions etc in a rhyming manner, however this isn’t all the time and he certainly doesn’t remember the last word he said a few hours earlier… though his a firm believer that a poem sounds better when it rhymes with the last syllable.

As most will know from a few of my past posts. Little man has become a fan of Bruno Mars. After I brought him the album some few weeks back, it’s been played daily to a extremity! Day one he had memorized every single lyric for every single song (much to my delight) pretty amazing, but also a little annoying.

He started doing this really irritating thing that was driving me round the bend. Everytime I spoke to him he would turn, look at me, open his mouth and out would fall song lyrics, completely unrelated to the topic at hand! He didn’t sing… more like spoke the lyrics before turning and walking away. With a sigh of relief I can safely say that this phase has come to a magical end. Sadly the obsession remains and is now on a equal par with transport.

Little man has always loved to create poetry. I remember a world cup poem he created last year, it was full on awesome and definitely a one of a kind!

On Valentines day on collection of my daughter from school she handed me one of her beautiful handmade cards (she is quite the little artist) The words she wrote were full of emotion and I admit I shed a tear or two (real emotional mummy is me)

Little man made a few of these cards when he was in the early years at school and although they mainly consisted of drawings of trains, buses & maps with no words inside (unless the teacher had noticed and therefore helped him write something) Regardless I always found them beautiful. The last few years, mothers day, birthdays, valentines etc Alice makes the cards Little man signs them. I’ve been reading a lot that many children/adults on the spectrum are great artist, I myself have created the autism art page on this very blog! However Little man has never really been a keen drawer unless it’s transport, maps or another new invention. He hates to use colour and I’ve learnt that this is purely to do with his frustration with his own fine motor skills… he has problems keeping the colour within the lines and has difficulty maintaining his concentration so he just won’t bother trying anymore. Although his sister, like myself love to draw and create pieces of art I’ve come to learn that my little man is an artist in his own right. He loves to write pieces of art (well dictate or type seems more fitting, as writing pen to paper is his pet hate) His poetry is great… very deep and meaningful, I think it’s his way of expressing his emotions at times. Then there are those that are full of humour… Whatever the kind there always pretty amazing.

So once home from the school he went off to his room where he closed the door behind him and vanished for the next half hour.

Sat on my bed half asleep but conscious enough to know little man was now stood directly infront of me.
One eye open (the night before wasn’t easy) I asked him what he wanted to which he made an annoucement.

“Attention please, Attention”

he then went on to say at volume…

“Today is valentines day, and all I know is its all about love and that stuff” he pursed to pull a funny face as to say love and stuff was yuck. “Its also my Nan’s birthday on Valentines day”

He was correct but I still sat wondering where the hell this speech was going!

“So, as I’m to tired after a long days learning at the library. I’ve decided not to make my mum a Valentines card, But I’ve made a poem for you mum instead. It’s all about Love & stuff” Again he did that face to resemble a person that was feeling sick. (the facial expression programme was certainly paying off)

I sat up and took note, smiling I nodded and said, “go on then do your thing”

“Its not a thing woman” he said in a offended manner! (yep sounded like his father a little more everyday)

“it’s a poem!”

“Calm down, I didn’t mean it in a rude way, it’s just something u say” I explained before adding…

“Oh, and a little less of the woman! It’s mum to you”

He laughed, cleared his throat and held up the paper in his hand at eye level then began to read aloud…

For the best, a poem that you will never want to miss.

He was a man that you miss and want to kiss
Your her blood and flesh
and nothing will go to mess
unless a heart will be broken
a tick of a token
You will be gone
and regret the bet you set.

Hands together I clapped and went in for a kiss which he reluctantly excepted with a screwed up face, only to then wipe it from his cheek with his sleeve saying, “yuck mum, that was a wet one”

“Nevermind that, your poem was exceptional” I proudly annouced.

to which he repiled.

“I’m good at this” (so modest like his mum)

As he turned around to leave the room I asked him where he was going now!

” I like the word exceptional mum so I’m going to put it in my book of best words. It’s not as good as the word loath, that’s still the best word”

He then came back with his book and asked me to write the word and it’s meaning. Of course I complied.

I get the feeling that everythings going to be alright from now on. With the exception of the odd bump in the road, i’m sure things are on the up. I’m so proud of all three of my children, each one with their own special character and amazing ways.

Looks like little man will be writing poetry besides patroling London transport as a member of the transport police when his older. Time can only tell.

I just want to be “NORMAL” mum.

11 Jul

It breaks my heart when I see my son so broken. I feel that so much has happened so fast his cognitive and emotional state has suffered. His confidence is also hitting an all time low. Little man needs lots of assurance I look at him and see a ticking time bomb. At home he can seem just fine then something happens to knock him down and the bomb starts ticking again. No child should have to feel like they are not “Normal” nor should they have to try figure out what it is about them that contributes to them being excluded from everyday life. Does every Child still matter? Is inclusion just being pushed aside? Just because you can’t see autistic spectrum disorders don’t mean they are not there! Every time a child gets left behind so does a bit of their ever flaking confidence. I myself would find the guilt intolerable if I contributed this. The more acceptance and understanding from society the less a parent gets told by their child ‘I JUST WANT TO BE NORMAL MUM.’

What I want and need to say to my child

Little man…..

..From the moment I discovered you where there I knew you would be special with many gifts and talents to share. I couldn’t wait to hold you in my arms and meet the little boy I had created. I would spend hours a day thinking about you, what you looked like and the person you would become. You were about to make me a grown up. Yes, I was young at just 18 but I was determined to be the best possible mother to you in every way. I had already done so much so young and had not long returned from working and living in Greece. I had a fantastic time and if it wasn’t for your dad I may off just gone back. Just knowing something this amazing was taking place right inside of my tummy was a breath of fresh air. Your great nanny Peg had just left for heaven and I could not see a way through something so painful you gave me the strength to carry on. Its like Nan had left leaving a new beginning in place of the one we had just lost. You were already more than just an unborn child. I loved you from the moment I discovered I was carrying you. Already you had changed something inside me I felt stronger than ever, you made it Ok to smile again. I felt extremely lucky and still do.

Four days overdue on the 1st October 2000 you proved you liked things done differently when you decided that it was time to let the plug out the bath so to speak . Yes, as I waddled like an over weight penguin around the supermarket it really wasn’t exactly the best of timing. Little man your dad ran away with embarrassment as he was convinced mummy had peed in her pants. Needless to say I was more than grateful to be out of there and safely in the comfort of the delivery room. 6.05 pm without a sound you were born. YOU SOMEHOW DECIDED LABOUR WOULD BE A GREAT TIME TO CHILL OUT IN THERE!! SO WE REQUIRED A LITTLE HELP. I was stunned at just how relaxed you were. With lots of red hair weight of 7 lb. 1 oz and a who the hell are you? Expression on your face you were handed to me and I held you for the very first time. You looked at me as if you knew all about me I remember thinking wow I’m now responsible for this little person! That and Wow where did you get all that red hair from? It was then I promised you I would always keep you safe and never let anything happen to you.

It’s rather comical! As I write this you laid stretched out on my bed. Your legs are so long your feet almost reach the end of the bed. It’s been another long night and when you eventually fell asleep on my bed at 3 am why sitting up discussing 194 bus doors I thought it was probably best leaving you there. Thing is you’re not that little 7 lb. baby anymore your almost ten years old. At first glance most would say you’re an average ten-year old but get to know you things will undoubtedly change. Average you certainly are not. You are so much more than that. YOU’RE MY INCREDIBLY CLEVER, TALENTED TEN YEAR OLD WHO CAN TELL YOU THE ROUTE OF ANY LONDON BUS. I’m so proud of you and I say all the above because its true and I hope that despite everything and everyone you know that! Now and always. Little man be proud of who you are the people who care will like you regardless of how you speak, what you wear, or how intelligent you are. Don’t fall behind in school to fit in, dumbing yourself down is heartrending. Express your interest without fear and those that are not understanding can just disappear. Show what your good at poems & numbers. If something hurts or isn’t right don’t run away its Ok to ask for help. Be proud of yourself because you are special. Don’t ever feel ashamed, those that don’t like it can ultimately lump it.

At the same time try to be considerate to others feelings counting to ten before saying something that maybe true but hurtful too. If your anxious walk away and find somewhere quite but safe. Please don’t hit others or yourself 😦 If you’re feeling like you’re not coping or you feel upset please tell me somehow something is wrong.

When you came home from school and said you wanted to be normal I didn’t know what to say. I know I should have responded straight away and I’m sorry I didn’t. This was only because I was upset that things were getting so bad for you I hope that I explained it to you in a way that made sense for you. It was as if I somehow felt I had failed you by not protecting you like I promised. But the truth is I can never protect you from life. Sadly life is often difficult but then when its good it’s fantastic. As for wanting to be Normal nobody is “Normal” Who came up with the term and who are they to suggest what is and isn’t “Normal” we are all individuals with a certain degree of uniqueness. If we were all the same life would be boring. The only difference for your uniqueness is yours has a name and like I’ve said before that name isn’t silly nor is it a name that defines you. Aspergers don’t make you who you are you make Aspergers what it is.

WHAT IS IT?………..

………..IT’S JUST A BOY LIKE EVERY OTHER BOY BUT WITH A LITTLE EXTRA MAGIC.

Its ignorance that’s shameful not you, not Asperger’s! I won’t lie the probability that in life you will sometimes feel you are excluded from society is almost a certainty. But never think this is because you are not “Normal” never sit and ask yourself why! It’s societies lost. One day they will wish that they had taken the opportunity to embrace and learn about The boy with Aspergers but by then it’s to late because his now the man with Aspergers who never looked back.

I love you so much little man and through I know you find things stressful and can get angry or aggressive I know a lot of the time your anxiety levels are just to high. I’m so proud of you for giving it your all and trying to reduce certain behaviours at home. Your aggressive behaviour towards your sister is improving and that’s all down to you. I hope that in time things improve at school and everyone gets to see you for the bright star you are.

The need for running shoes

25 Jun

Ok First I have to apologise for being such a terrible blogger. It’s been weeks since I last posted and as always so much has happened I get fried brain trying to work out where to begin. So I have decided that It’s of great importance for me to report the ins and outs of our recent day out and what a complete DISASTER it was. It’s not easy having problem free days out with a child on the spectrum. Queues, noise, smells, environment are just a few of the many triggers that lurk and pose a threat on your family outing. Well, its safe to say once home and able to analyse the whole situation it was clear to see that all of these and more contributed to what can only be described as a challenging day out. No, it didn’t help that the free bike and kite festival that was put on by the local council was of no real interest to little man. Then there was the fact that he somehow thought we were going to a fun fair (don’t know where he got that idea) We spent the best part of the afternoon hearing ‘Is this bloody it’  and ‘where is the fair then’ No I’m not kidding it really was this bad and worse.

This is my account of the days events I’m guessing little mans may differ. After running around like a headless chicken trying my hardest to organised myself and the three children we finally made it out the door and into a taxi and headed off for what was meant to be a fun day out. We were of to the Bike and Kite festival. This is a free event that is run by the local council and often attracts a crown. Little man isn’t to bad with Crowns it just depends on the environment and his mood. His great with fun fairs the music and lights are a favourite part of the trip. With this I took it upon myself to assume he would feel the same way about the festival. Out the taxi things started well. We met up with my good friend who had a gift each for the children little mans being a model bus. Buses being his “special interest” made this the perfect gift and little man was displaying a huge smile. This huge smile then decided to shy away and hide out for a while as it was only seen a small number of times through out the day.

Little man’s ability to have a little fun was partially non existent at the beginning of the festival. He was beginning to get himself into a mood and getting him out of it is near on impossible. Walking around a few of the stalls he got upset and angry because we were looking at hand crafted jewellery. We had only just arrived and intended to look at everything in due course. Explaining due course to a child with Aspergers doesn’t come easy. Patience! Well, who needs patience? Certainly not little man or so he thought. ‘I wanna go there’, ‘I wanna see that’. I hear you say well isn’t this all children? Yes, to some degree but this was more extreme in many ways. Example! Once we had agreed to do one thing he is already freaking out about doing the next. I admit it had been sometime since we did a day out and I was starting to remember why. We were only safe when at a place of interest and even then it could be a worry.

A break was needed and we grabbed a spot to settle in. I had prepared a feast of a picnic and we were all pretty keen to sit and eat it. SORRY DID I SAY ALL? ALL EXCEPT LITTLE MAN THAT IS. He expressed his disbelieve at the fact we had chosen to sit and eat when we needed to be up and doing things. One of my many techniques as little mans mother is to try and engage him in conversation on a topic of his interest to get him to relax. He was stressing and pointing asking why others were able to do things and he had to just sit and eat crappy food he didn’t want in the first place. My tactics of engagement were failing fast and lucky for me and everyone sat around us A bike stunt show had started in very close view from our chosen picnic spot. Oh yer the blissful sound of…. Well, music and cheering but this was better then the full on wringing I was hearing a few seconds prior. Owning a bike and being rather good on it little man enjoyed the show and flashed us a brief smile. Moments like these give you the encouragement to carry on with your day with the hope of it becoming increasingly better then it had started out. To be honest things did start to go in this direction and for a few hours with the exception of minor problems (the inability to queue for the bouncy slide without displaying his need to get on the slide NOW. The tantrum over wanting me to buy him items that were well out of my price range) things were Ok.

I started to enjoy being there. My daughter was happy playing with a kite we had brought from one of the many stalls. My six month old sat happily in his pram starring at the beautiful display of flying kites and little man had gone from raging bull to a clam child who was pleased with the bubble gun he had brought. Things got even better when he spotted an open top bus parked on the grass. Unbelievable no matter where we go a little bit of little mans “special interest” comes with too. I don’t mean to imply that this bothered me if anything it tickled me! He was overly fixated on buses. His level of interest on his subject was fascinating. I have never seen anybody have a passion for something on this scale. I guess this is the true Aspie in him.

Little man darted to the buses leaving me far behind. Lucky we were with my friend still who dashed after him and explained that he was unable to just board the bus without the given permission of the owner. Can you imagine the terror in our eyes when the owner shouted ‘SORRY THE BUS ISN’T FOR PUBLIC USE’ Oh my god was he really going to do this to me. I sound selfish I know. I should have been thinking is he really going to do this to little man? The thing is I couldn’t bear the thought of losing the blissful day that was so hard to achieve. We had got this far the prospect of tantrums (huge ones at that) was to much to bear:( I guess an angel was looking down on us, This and the fact my good friend had a quite word in the owners ear as this got little man safely onto that bus and saved us all from the terror of what may of been (well for now at least)

Little man was in his element on that bus. I sat on the grass as he explored the thing inside out. My friend followed close behind snapping pictures of my smiley boy. My little girl was still flying her kite and seemed happy to do so all night if she could. It was great to see the children both enjoying themselves. Of and to not have the constant bickering was another joyful reason to be sat with a smile.

It only seemed right to end the day on a high and as the festival was near on coming to an end we decided to make a move. The festival had taken place on a large heath (Blackheath) The heath was huge and the festival had not even taken half the space. For this reason we were surrounded by grass and the children had loads of open space to run around and get all the left over energy out of their systems before heading home. Little man began asking how we where planing on getting home. By this he was obviously referring to the type of transport we would be using. I asked him what he suggested. By doing this I expected him to say lets catch the 54 bus back home. Of course I should have known better then to just assume. ‘Let’s get the 380’ he replied. Ok the 380 is a small bus and it only goes to Lewisham which is only half the distance needed. Then there is the fact the babies pram isn’t far off from being a bus itself! Yes, it’s big and red but only has three wheels not four. I did actually say this to little man and I said it in that exact way. Sarcasm and Aspergers isn’t a good mix and I found myself having to explain why I would consider the babies pram to be a bus. After a bit of a discussion little man seemed fine with my reasons for not getting the 380 and with the promise of riding the 380 on the following weekend as a reward if he manages to behave at school with this we headed off towards the 54.

THE MOTHER OF ALL MELTDOWNS

It was right at the end of our magical day (It had turned out this way) That a storm broke. I’m not referring to those that take place in the sky as an act of god! No, I’m talking about those involving abusive taunts and aggressive, challenging behaviour that are all an act of little man. Yes, we had left the festival and I really considered us out of the danger zone in relation to meltdowns. Silly how wrong one could be. It began with little mans bubble gun running out of bubbles and him entraining himself by chasing his little sister who was still happy kiting along the heath. I heard myself a number of times requesting he stopped and a number of times (all of them) he didn’t. He then decided to take things further and give her a push and a shove for no reason at all. I told him I would take his bubble gun if he carried on chasing or hitting his sister. Of course he did and of course I had to be consistent in my threat to take the bubble gun. The problem was actually getting it from him. Luckily once again the help of super mate was required Little man run and my friend gave chase. We do know that chasing little man is something he desires and we often try not to engage in this activity. My friend rolled around on the floor play fighting with little man. He loved it and it gave me the perfect opportunity to grab that bubble gun. In the struggle to do so I accidentally stepped on his fingers. With this he stood up and scream and swore for me to give him his bubble gun. He then told the world how much of a bad mother I was as I had hurt him. Please ground open swallow me NOW. Oh god it got worse. After a number of hurtful insults (many I have heard before) he then decided sod the 54 the 308 sounded a much better idea. Super friend even had trouble catching him as he ran towards the bus stop even crossing the main busy road running through the middle of the heath. Once he was finally back he decided to walk up to his sister and give her a hard push that resulted to her falling to the floor. It was her reaction that upset me most. She stood up without a word and carried on playing as if nothing had happen. She had become used to such unacceptable behaviour. With this and his on going comments.. Get run over by a bus and die, and I’m the worse mum ever and the fattest being a few I was at breaking point. I know shouting don’t help and it sure as hell wont with a child on the spectrum but I’m only human and Its fair to say I lost it. I had been on the edge best part of the day and I had finally fell. HEAD FIRST. I told him to go away then and with this he did. S**t that’s the thing with children on the spectrum they tend to do exactly that! Go away. My friend was fast becoming a world class athlete and given the location anyone would think she was training for the marathon. Again she brought him back and he sat on the grass with his angry face on. He went on and on and on about how I can control my feet, standing on his fingers was not an accident. Tired of the situation I admitted defeat and called his father who once heard my blabbering over the phone jumped on a bus and took the 25 minute journey to health. Little man had since gave me a quick hug. I think this is because he figured that yes maybe dad is actually coming after all. He says it’s not for this reason but because he don’t really want me knocked down by a bus (I only hope he don’t) He then said sorry asking me to do the same. Yes, I was sorry I shouted but not sorry I had taken his bubble gun or called his father. With this dad arrived and took both the children back home on the bus leaving me with the baby and an exhausted best friend who I love dearly:) And owe a night on the town to.

So what did I learn? I learnt a number of things and here’s a few… Don’t call the pram a bus! Call it a pram, Don’t step on little mans fingers (learn to control my feet) Don’t shout Go away! As little man will do just that. Lastly I learnt.. Buy a good pair of running shoes and wear them during family days out.

RUN FOREST RUN.

IT’S THE FINAL COUNTDOWN.

14 Jun

It’s the final countdown.

I’m guessing most people all over the world knows this song by queen (Freddie mercury )

However I bet you don’t know it as well as me! Reason being is I hear this song at least 30 times per day. No I’m not a huge queen fan. Don’t get me wrong there songs are pretty cool but not really my cup of tea. I really don’t have a choice but to listen to it most of the day. Reason being is Little man loves it! When I say he loves it I mean he adores it. If it’s not playing from his laptop 24/7 You can bet your life on it that little man will be singing it from the top of his lungs. He knows every single last word, Just like a pro. Only down side is sadly he takes after both his mother and father who both don’t have the voice of angels 😦

So I took action. I fault that if he liked the final countdown so much then maybe he would enjoy some of queen’s other classic tunes (Hay anything was worth a try ) At least then we could listen to a number of different songs. So I went onto utube and had a look. Did It work. Well kinda! Yes he enjoyed many of the other songs. The classic Bohemian Rhapsody, Living on my own and I want to break free were soon become close favorites. I would hear him in the tube singing aloud but still nothing topped his number one spot. Yes the final countdown is here to stay.

A Great School Day.

23 Apr

 Today when I picked little man up from school he had a huge smile on his face.

Today was a great day at school for little man. I must admit I myself was a little worried how things may go for him today. Why ? Well the school were expecting a visit today from someone special. This someone special happened to be a large Falcon and a few of his friends. yes an Eagle and a few owls would be joining him. As some off  you may know, as little has ASD he can often become nervous around stuff he don’t know. I was also worried as he also has some sensory issues we are still tyring to work on. So I guess I myself was worried the falcon and friends may be a problem for little man. 

Well need I had worried? No not at all. He loved it! 

When I picked him up from school today ( well a little under an hour ago to be precised ) all he wanted to discuss was his love of the falcon. Yes this was his favorite bird. I’m beginning to think there’s a new found interest for little man, however I’m a little unsure if anything will ever replace his true love of trains and buses! He spoke about the bird all the way home, then he googled it as soon as he stepped through the door. 

My little man amazes me a little more with every passing day. He also makes me a very proud mummy. 🙂

So I have told little man that if he is good for the rest off the week, then in the summer school break I and his dad will take him and his sister Alice to meet some more birds of prey. Well lets say that his face lit up like a star. 🙂 



KYRA & FLUFFY ON THE BIG INTERVIEW

20 Mar

TODAYS THE DAY:) 

This is the Big Interview with Kyra Anderson from the blog This Mom and her wonderful, bright amazing 8 year old son Fluffy. Kyra shares her life on parenting a child on the spectrum ( Fluffy has Asperger’s ) And Fluffy shares a little about his life, his likes, dislikes, his blog, house rules and much more:)

When Kyra sent the interview back to me last week, It was such a joy to read. I hope you all enjoy this fantastic interview as much as I have

Kyra…… your Fluffy’s mom is that correct? I understand Fluffy has Asperger’s! When did you find this out and how do you find it being a mother to a child on the autistic spectrum?


We got Fluffy’s diagnosis a little over four years ago after Fluffy got kicked out of a private preschool program. The local school district’s assessment results pointed to an autism spectrum diagnosis and they referred us to a specialist who confirmed he had Asperger’s a few months later. By that time, we had been researching and reading online and were not surprised

 

When I found out I was pregnant, someone said to me, Strap yourself in and get ready for the ride of your life.Having a child on the autism spectrum, for me, has been like that: a wild ride. A wonderful, exhilarating, surprising ride that has been, at times, terrifying, isolating and confusing but incredibly illuminating in the most profound ways imaginable.

 

Fluffy… Hi great to meet you I have read lots about you on mommy’s blog and I see you have your own amazing blog. Is that fun to write?


Sometimes. Sort of, like maybe when I’m in the mood to write and by the way did you read the first one that says that my real name is Wyatt? I just want people to know my real name.

 

 

Kyra… So your a really busy mom! As well as being a wife to Dave and mother to fluffy, your a writer and you home school Fluffy is that correct? How is this for you? Do you every get some mommy time?


Fluffy is getting more and more responsible and aware, more involved in the household. The homeschooling is becoming a bit more intuitive and manageable. We now have two fantastic sitters that Fluffy adores, one of whom just started being able to put him to bed so Dave and I initiated regular date nights. So, yes! I actually am getting some mommy time these days! I’ve even gone away for a night or two on my own.

 

What I need now, what Fluffy and I both need, are some friends! Our life is still too solitary.

 

 

Fluffy… What are your best school subjects? Is their any subjects you really love and any you don’t like?


I really love the math school subjects but then cursive can be hard. I don’t really NOT like it but sometimes it can be hard.

 

 

Fluffy… I hear you have some favorite foods, french-fries being one of them. tell us what you love to eat?


Do you mean other than French-fries? Now, let’s see…corn dogs, tacos, popcorn, baguette, everything bagels, cotton candy but that’s not really a food. It’s a desert. Oh! I like many things. I like pizza, salad–but that’s not one of my favorites but salad can be really high up there and … that’s all I’m going to say.

 

Kyra …. Do you find dinner times hard with Fluffy?


Not really. Family dinners have been a sweet time for us, most of the time. Up until the last six months or so, Fluffy’s been a good eater. I’m not sure what’s up with the food lately–he seems to be restricting his diet more and more, having a lot of sight aversion/sensory issues.

 

A few things we do: Fluffy has a great chair with an adjustable foot rest, a bumpy cushion to sit on and a thera-band tied on the table legs by his chair so he can push against it with his feet. All those sensory ‘snack’ strategies are important. It also helps to make sure he doesn’t get too hungry (it’s always the first thing I think about when his behavior gets out of whack—what and when did he last eat!) As a general rule, we try to make sure he eats every two to three hours, preferably with protein at every meal/snack.

 

Kyra… Has Fluffy got any sensory problems? Do they affect his everyday life? And have you found ways around them to make both yours and Dave’s life more easy and most importantly Fluffys? I know as a parent to a son with Asperger’s this can be one of the hardest things associated with the condition.


My guess is that the sensory piece is an enormous part of the social struggle for Fluffy. I have this feeling his body and mind get ‘flooded’ in social situations, a kind of bombardment that makes regulation and frankly, thinking, very difficult.

 

He’s had OT for over three years, but it’s only been in the last six months that we’ve great strides. I think it’s a combination of a great new therapist and Fluffy’s own maturity.

 

We’re at the point where he’s able to recognize when his body ‘energy’ is off. We’ve worked really hard on this in lots of ways with self-talk and day-to-day strategies to create an ever-evolving sensory diet. We have ceiling hooks for all sorts of indoor swings, bean bags, hippity-hop balls, sensory stuff all over the house!

 

Where did the name Fluffy come about? I understand it’s his nick name ( very cute )We call our son little man! which I refer to him sometimes in my blog. Reason being is sometimes he really acts like a little man not a child.


We have million nicknames for our son. My husband Dave loves to sing made up words to various tunes, Joy to the World. Ever since Fluffy was a tiny baby, he’d march around the house rhyming nonsense words to that tune, singing something like, “Fluffy McBee, is four times three. He’s eleven times six plus eight times two plus three!” going on and on in the most inane fashion imaginable. It’s been both wonderfully entertaining and annoying for ages. It’s the nickname that others found the most appalling and so, for some reason, it cracked us up the most. And, there you have it!

 

Fluffy….I see you love star wars! Tell us some more of your favorite things! I have also seen some fantastic videos of you, mommy and daddy. You play the keyboard and piano! Is that fun? You very good.

 

I really like playing laser tag. And there’s a game called Monopoly Deal that I like, too. My favorite game is Spore where you start as a single cell organism and there’s no real goal in the game other than to have fun. I likeCivilization IV and Crazy Machines–that’s really fun. I like funny cartoons, reading them like Peanuts and Calvin and Hobbs and watching them on TV like Tom and Jerry. I like all kinds of things.

 

I like to play the piano.

 

Kyra… Your blog This mom is fantastic! When did you first start writing it and for what reasons?

 

I started in January, 2005, right around the time of Fluffy’s diagnosis as a matter of fact. I was feeling incredibly isolated and overwhelmed, profoundly worried about how to provide what he needed to really thrive, disillusioned by the lack of support and helpful information available to us, horrified by the double message of Hurry up and get busy with therapies! Don’t miss the magic window! AND the waiting list for assessments and services that were 6 months, one year, up to two years long.

I needed to carve out a tiny place for me to have my voice, my mother-voice and all it’s glory and mess. I wrote for my own sanity during a time of groundlessness and then slowly, through the writing, found my footing and then other mothers out there in the blogosphere, writing about their lives. A real community developed, one I still feel connected to four years later!

 

Fluffy… There is some fantastic Art work on your blog. Do you do Art a lot?


Sometimes I can like drawing when I’m in the mood.

 

 

Kyra….How is Fluffys behavior? I see you have some family rules that you displayed on your blog! Would you mind telling us a little about them and how there working out?

 

I cannot say enough great things about the Nurtured Heart Approach! We’ve  been using it at home for the last few months and it’s been transformative.  It’s been called a social curriculum and I can see why. It’s helped Dave and I be a real team in our parenting. It’s helped Fluffy with self-image, episodic memory, impulse control, and self-regulation. It reminds me of RDI in that it’s a way of being with your child rather than a discrete period of therapy.

 

Fluffy…Do you like the new rules? Are mommy and daddy sticking to them?


I LOVE the new rules! Mom and Dad are completely sticking to them! Boy! Are the new rules great!

 

Kyra…. Has Fluffy got an interest that he is obsessed with? If so how do you deal with that. And what are your hopes and dreams for your son as he grows up?


Fluffy is most passionate these days about Spore, a new computer game he got about a month ago. All roads lead to Spore! He’s been passionate about other things in the past and I’m quite sure his passion will shift to something new in the future.


I try to approach it as I would with anyone who’s wildly into something: respect his interests, do my best to learn about them, to have real conversations with him about them, give him opportunities to play with whatever the latest fascination is, and create some boundaries around it.


For example, he only gets a certain amount of computer time a week. And if we’ve been talking about Spore for a while, I’ll just say, “You know, I’m getting a little bored talking about Spore now. Can we talk about something else?” Or I’ll simply tell him that I love that he loves it but that my mind can’t keep all the details in! “It’s like a bowl full of water and I don’t have room for any more drops,” I’ll say. He gets this now and sometimes he’ll say, I know, Mom! For me, it’s great. For you it’s like an attack of word bullets!

 

Kyra….To finish up would you be willing to give one tip or small piece of advice for other parents that may be reading this and have just found out they have a child on the autistic spectrum?


Well, my advice is general and also specific!

 

The general: I’d say, find someone who you can talk to about the WHOLE process. It’s emotional at first. All parents want their kids to have big juicy lives. When we find out our kids need more than the basic stuff, especially when the news is reported in dire language, it can be terrifying.  Find someone who will let you go through a PROCESS, to take you from here to there. Find someone who will listen and also give you hope. Trust that you will move through your feelings and the details of finding out what your child needs and how to provide that for them.

 

The specific: I think RDI (Relationship Development Intervention:  http://www.rdiconnect.com) is a powerful program for the whole family and absolutely mind-blowingly helpful for kids on the spectrum. I think finding a greatsensory integration specialist is key. Once you build a foundation with those two things, or at least make some headway, you might find Nurtured Heart can offer guidance in how to navigate the parenting/discipline piece, especially if you have what you might call an ‘intense child’.

 

I will say, there has been a significant shift in our lifestyle in the last year that comes Fluffy being in a whole new place. And from me being in a whole new place. It hasn’t come overnight. It’s been bit by bit but it seems to have its own momentum now. I don’t look at him as needing this or that thing to fix this or that issue. I look at him more holistically, like the whole child he is with things he’s good at and things that come more slowly, and try to support his development the best way I can, his whole development.

 

I don’t worry so much now. Well, okay, I’m alive and I’m a mom so I think it’s safe to say, we all worry. But not in the way I used to. Mostly, I trust that Fluffy’s on developmental pathway that will take him where he needs to go.

 

Now, my job is far from done. He’s only eight! But I can take what I’ve learned from RDI, from the sensory integration work we’ve been doing and will keep doing, from the Nurtured Heart Approach and my good old gut and hope that over the next ten or fifteen years, he’ll go out in the world with enough confidence and competence to begin the journey of creating a meaningful life that feels good to him. I can’t know for sure.

 

But who can know anything for sure? The universe is mostly made up of something called dark energy and dark matter, stuff that no one has ever seen. And yet, it’s out there.

 

We all have to believe in something we can’t yet see. Even if it’s a tiny bit, a pin prick in the black fabric of the night sky. Sometimes that’s all the light you need.

 

Fluffy… And my very last question for you as I guess you may be getting bored now is what would you like to be when you grow up. And what is the one thing you would like most in the world?


I would like to be an astronaut/space scientist when I grow up the whole idea of black holes and worm holes andwhite holes are very fascinating to me and I want to study them.


I want to be the one to invent a Worm Hole Generator because it is going to help NASA explore space. Worm holes are like time and space teleporters. I’m not sure if the one I invent will be a time AND space one but I would want it to be but maybe just a tele-porter would do. A tele-porter moves someone from one place to another place anywhere in the universe, immediately.


What I want is to figure out what my destiny is in this life and then do it!

 

Thank you Kyra and fluffy. It’s been great speaking to you both and thanks again for taking part in the Big Interview.

LIKED THE INTERVIEW THEN WHY DON’T READ MORE ABOUT KYRA AND FLUFFY OVER AT THE FANTASTIC BLOG THIS MOM! YOU WILL FIND SOME GREAT POST, WONDERFUL PICTURES AND BEST OF ALL THE LINK TO FLUFFY’S BLOG:)

WANT TO BE PARK OF THE BIG INTERVIEW? EMAIL ME AT parkinson.claire@yahoo.com.

The sparkle in his eyes

20 Jan

My little man’s face was a picture.
His big eyes were wide open.
I could see the delight in which he was living. He was in one of his favourite places’ he was on the 136 bus.

Yes that’s right my boy was enjoying a trip to the supermarket on the big bright red London bus. There is only one other place that I see that look on his face and that’s the train.
For a long time G has had a great interest with trains and buses. He loves to board the bus where he can then observe everything in great detail’ and then process it in his brain.
The doors and how they work is where his true love is. He often’ well always acts out the opening and closing motion that they make. He can do this for hours at a time. He likes to know where each and every train and bus is heading. He will then store the information and later repeat it over and over as he walks from side to side demonstrating the moving doors with his arms or even using household objects such as a pair of sunglasses or two pens.

Watch out. If you happen to be wearing a British rail uniform or any uniform that shows that you are employed by London transport. Because if you catch my son’s eye it is extremely possible that you are about to undergo a extensively long interview. This is near on impossible to avoid.

My little boys interest is nothing less or other then pure obsessive.
He can wear you down with his consistent chit chat regarding the Hayes train line or the 181 bus having just installed new green bars where these used to be yellow.
I would be lying if I said sometimes I don’t think “PLEASE GIVE IT A REST MATE” But when I see that sparkle in his eyes and that smile across his face I know in a instant this is what makes him happy. And if his happy mummys happy:)

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