Tag Archives: routine

#HAWMC DAY 18 – Inspiration

23 Apr

Stories can be used to establish social routines (using ‘fill in the blank’ procedures) and improve the ability to make social judgements. They may also be useful in helping others better to understand the child’s perception and responses.

 Children With Autism & Aspergers Syndrome: A Guide For Practitioners & Carers (By Patricia Howlin)

 The above statement is one made in one of many books I own that covers topics relating to the autism spectrum.“Children With Autism and Aspergers Syndrome – A Guide For Practitioners & Carers” was one of the very first books I acquired on the subject and I will still often refer to it from time to time. So, naturally when day 18 of the #HAWMC was set with the prompt “Pick a random statement from a book and write about it for 15 minutes” this was my first port of call. 

 There are hundreds upon hundreds of statements made within this particular book, so, why this one?

 I feel it’s important to highlight the above to other care givers, especially those with a newly diagnosed child. Yes, this is a life long condition that cannot be cured. Nonetheless, there are things that you can do to help your child develop better social interaction and communication skills, along with important life skills with the use of some commitment and good old-fashioned creativity.

 When my own son was first diagnosed, I didn’t really get sat down and given all the answers, if the truth be told no one really has them to give. Yes, I was sat on a chair amongst an entire room of professionals and all though I was asked that question… you know the one “Do you have any questions” I just didn’t know where to start, I just remember having plenty. I was therefore sent on my way with a folder of bits and pieces and a very jumbled mind. 

 It wasn’t in-till long after the little guy was diagnosed that I attend something called the “Early Bird Plus” designed for both caregivers and teaching professionals caring for or teaching a newly diagnosed child. Now although “Technically” Little man wasn’t exactly newly diagnosed, I still wanted to attend and have some of those unanswered questions answered! 

 It was during this course that I was first introduced to the simple yet effective idea of visual prompts and clues. With this I didn’t only discover ways to formulate routines, making them visible to Little man so he remained aware of what was happening when and where, but they also still play a big part in Little man’s daily bathroom routine enabling him to better do things in sequence (though sensory sensitivities remain a huge factor we are yet to improve)!

 There are many ways to use these visual aids (kinda like the visual symbols used for PECS). They are also very easy to create or if you don’t fancy that they can be found normally on a string of websites and are mainly free to download. 

 I designed and created a great visual aid for use in the bath room and that of the bedroom. Although he reacted in the way I expected when introducing the aids I soon discovered he was using that of the one in his bedroom to help him formulate his bedtime routine! Ok, he remains an extremely poor sleeper, though he does follow the chart removing the symbol cards that I attached to some Velcro dots, placing them in the pocket I attached to the bottom of the chart. He now uses a written reminder he keeps within on of his many organisers. Nonetheless, the bathroom system remains in place and although his very tactile defensive his got the sequence going and is trying much better than before.  It’s my view that any positive improvements within this area really need to be fused over with lots of praise being given to the child.

 So, how else can we use pictures and words as a visual clue and symbol to teach our children the basics in making the right social judgements as-well as good communication and interaction skills to formulate good friendships?

 Some may have heard of social stories which are a great way of getting a child on the spectrum prepared somewhat for an unfamiliar situation such as a trip to the dentist or even a fun day out at a theme park. 

 You can easily make up a pretty effective social story with no more than an exercise book and some pens! However using photos (if available) of the places that you plan to visit and those people you are visiting (of course with their given permission) can really help a child with autism or aspergers feel more prepared with the situation and therefore calmer on the day! Lets face it, who likes visiting the unknown? Those with autism have difficulty regulating their emotions and that of anxiety can trigger a number of undesirable reactions both during the lead up and that of the day. 

 Little man is growing up, his heading up to secondary school (lucky for us this is one that is attached to his current independent special school). People find it difficult to understand that many of Little Mans sudden outburst are caused by anxiety. I think this is not only because Aspergers is known to be the “hidden disability” but more the fact he can come across (at times) rather street wise, especially more so now. The truth is he is improving with the help of his school, his friend next door and some social modelling from others, but his still more than likely to say the wrong thing, something inappropriate, generally considered social unacceptable. But there are times I do wonder maybe they got it wrong then bang… something happens, a meltdown, over intense conversation on his special interest and the inability to shut off. Then there’s his all nighters and inability to switch off. That’s the thing, your child may have problems with social skills but as they grow they can often act a certain way for a chain of different social situations. I’m not stating Little man is socially correct all of the time but his learning. One thing I do try empathise & encourage is for Little man to be himself as he has at times totally moulded himself in a certain way to fit more comfortably into certain social groups and gatherings. He maybe a success but once home he off loads and he will normally have a hell of a lot of bottled up stress need releasing. It’s important that he knows how to behave for an array of situations but to reframe of hide who you are by either going into oneself coming across as a bit shy or maybe even a loner to avoid running into difficulties or act a way because it gets you liked by others, both something  Little man engaged in during mainstream, I can tell you from a parental perspective that this isn’t anything other than a disaster waiting to happen. 

 As many a parent of a child on the autism spectrum can probably vouch, we as parents are presented with that bit more reason to worry when it comes to our children growing up and therefore having to experience new things as they embark on their journey to adulthood. Something like visuals and good social modelling are of the up-most importance and will in time become a natural way of life and acquired parenting skills that we will find ourselves doing with little if any thought at all.

 You know your child and will learn what works best for them and you as a family. As mentioned earlier within this post, Little man no longer uses visual symbols for within his room but now uses words, just as you or I may write our schedule of order of events in a personal diary or organiser , this works and if even he remains awake till 3am with school set to kick of a few hours later, his still able to do those important steps to prepare for bed from brushing his teeth to putting his clothes in the wash. As for preparation for a new situation, we don’t always get things right (those that read about our Butlins holiday at Christmas will more than agree that it didn’t go smoothly) yet at times things go much better than maybe they would have if the effort to prepare Little man wasn’t made. I did the social stories with pictures, but he sees things very black and white so its important to have visual reminders of “Real life” places, people, etc this helps him to formulate some kind of image and expectation. The only danger of this is to be careful not to overdo it as spotted difference or unexpected changes could make the hard work go to pot!

 Lately, I’ve tried to be more creative with how we do the above. I’m agree he knows he sees thinks differently and thinks and processes information a tad different from his age peers. I’m also aware that as his grown his not welcomed anything that causes him to stand out so I’ve tried to continue with the preparation while making it more fun, age appropriate and fun. Last week why searching the App store on my iPhone 4S for some type of daily planer and social story maker, I found Comic Book. As you do, I had great fun playing around with it and trying different things. I created the picture below of my toddler Harley, and sisters new baby Riley. It has a number of stickers with great phrases, themes, colours, fronts and more. After testing it with the toddlers pics, I felt assured that this would be a great fun addition to my social preparation tool kit and Little man agreed it was pretty cool. Maybe with the doctor’s permission  you could snap a few pics during the next appointment and use this for your comic strip! For me, this is an App that will provide more than just good fun. 

 Other ideas are that of video recordings of places you may visit, memory books of the places you have been to before or even use small visual cards, laminated and hole punched and added to a curly key chain key ring and attach to your child’s belt loop. This is perfect for non-verbal children as they can use the symbols as a way to communicate their basic needs such as using the toilet while at school instead of become frustrated or upset. Again all these are easily made and need not cost a fortune.

 I also mention in another of my recent #HAWMC post about the brilliance of Pinterest, I’ve created a great Autism and Sen board that’s packed full of ideas to help your child in the areas discussed and many more… Yes, total pin head here! 

Below are some ideas on creating and using visual aids. These are taken from the autism & Sen board on my Pinterest and original author also included with these pins

from the blog rockabyebutterfly.blogspot.com

from the blog carrotsareorange.com

from the blog etadventures.blogspot.com.au

 Visuals may not seem appropriate right now, you may feel your child doesn’t need them? Remember at some point in our life we all require the use of prompts and instructions as-well as organisation… a work timetable or organiser. When we experience anxiety concerning an upcoming situation or event we form a mental picture which isn’t always easy for a child like mine! Early intervention is the key so if your child could do with a little prompt or preparation, why no give visuals and social stories a try? 

Aspergers – Worrying what the future holds

18 Jan

When you mention that your child has Aspergers Syndrome, most that have some understanding of the syndrome, just think the characteristics are a lacking in social interaction skills, literal understanding, or an intense special interest. There is so much more to Aspergers then this! One of the main difficulties for Little man is learning independence skills, the most basic everyday things that a “typical” child masters in the early years of life, such as tying their own shoe laces, Little man is only just beginning to do at the age of 11 years.

We have always struggled when it comes to daily hygiene, basic teeth brushing and hand washing are a few amongst the list of difficulties Little man has. This is due to a combination of factors such as, sensory sensitivity (which is defiantly the case for brushing his teeth, and reluctance in letting me cut his nails) to lacking the basic skills needed to do what you or I can only describe as the most basic of tasks.

The hard thing for us as a family is the fact Little man is more than aware that these are skills he should have mastered by now and yes it make him very anxious and upset.
It’s not that he doesn’t want to wash his face & hands, like I have said this is just a basic skill his lacking, which is why we use visual aids in the bathroom. Little man just needs a visual reminder to remind him of the order in which certain things need to be done!

So, here’s my worry… shouldn’t Little man have mastered the order of play by now, not be relying on visual direction as much? This is something he cannot be doing as an adult and as we reach the years of puberty (oh god I’m dreading these) this will become an even bigger and more needed skill that he must acquire.

When Little man was much younger, even though we struggled to obtain a diagnosis, then a statement of sen… things such as these were much easier to cope with! Now my Little man is growing fast, before I know it he will be 16, what then?

Like any mother, I only want the best for my child! I want him to grow up, get a job, a wife, have a family of his own! I’m not stating he can’t do these things, I know he can! What I need to do is step back and help him to help himself!

It sounds harsh, yes, I know! But he is my son and I love him! I am guilty of doing what many mothers of children on the spectrum do… helping him that little bit too much! If Little man finds something hard to cope with, it’s easier for me to remove the source of the problem, yet in the long run how will this help him? I’m not just talking about hygiene now… I’m talking about everything, from sensory overload, when we take a visit to the supermarket or fighting with his sister (there is only so many times you can remove a child from the situation after all)!

Yes, such issues are true struggles for my child, however it must get to that stage where in order to help my child cope with the things he finds most difficult I need to slowly introduce new techniques to help him acquire better skills for his future, I’m gonna have to start now… before my child is relying on his mum, come age 21!

I just wish these things were easier… that’s all!

Preparing my child with Aspergers for our family festive break

8 Dec

17

Days till Christmas

We’re off to Butlin’s this weekend and are all rather excited about it.

 However, it’s really not a case of “just up and leaving” for us! Well, I suppose it isn’t for anyone really, but for us such a trip means extensive preparation.

 Little man is looking forward to the trip, however he has many concerns, things that for most add to the excitement of a holiday!

English: Skyline Pavilion, Butlin's, near...

Image via Wikipedia

 Little man wants to know, how everything will plan out! Just how will we get there; how long will it take; how long does each and every activity last; what are the bedrooms like; what do they use to clean the pool; does the hotel smell of bleach, will there be a shower?

 OK, OK… Most kids ask questions but for Little man it’s not just a question but a real concern!

 When it comes to days out we need to ensure good preparation has played its part, otherwise Little man will suffer and the entire family will pay dearly. The truth is, I’m unsure why god considered me the “Right” person to mother a child on the autism spectrum! Organisation has never been my strong point! Well, when it comes to actually getting somewhere on time, I’m the worst ever! Seriously no matter what I do, something always seems to happen… always!

 We went camping back in July and absolutely nothing went to plan. It was extremely hard work and at certain points of the holiday I did have to stop and ask myself why I was actually putting myself through this. Yes, that may sound selfish and maybe a thousand adults on the spectrum reading this will now jump on my back! I know it isn’t easy for the Little man either, but at the time when his having an almighty meltdown in the tent at 2am, I did ask myself why!

 I always come up with the same answer! His my son, and just because he has Aspergers doesn’t mean he should miss the experiences that all children are entitled to. As a family, we are all entitled to a holiday and as hard as this may be, I’m determined to keep on trying! It’s my belief, the more we do these things, the better Little man is able to deal with them. It’s not that he don’t want to go on holiday’s or have day’s out, if this was the case then of course I wouldn’t push him, the fact he does want to engage in such activities, no matter how hard these things become it gives me that nudge to keep trying.

Camping wasn’t ideal for a child on the spectrum, especially camping at a festival, to be honest, it was the most unstructured place to take a holiday and as much as he now declares his a big camping fan, I would need to be thinking long and hard before embanking on such an adventure again.

 Now, we have been Butlin’s before! Little man was around 5 and this was prior to his diagnosis. Nevertheless things went surprisingly OK. I know his that bit older and yes, things do tend to unfold quicker and normally in a bigger more explosive way, but considering how structured Butlin’s can be I think it may actually be a really good place for a family consisting of a child with Aspergers to take a break.

 Well, we’re leaving on Friday, after school so it really is upon us.

 Here’s what I have done in preparation so far.

 We are staying in the Butlins hotel and I’ve checked with facilities are in our room (tv, shower, single or bunk beds etc.)

English: Ocean Hotel - Bognor, near to Felpham...

Image via Wikipedia

 Packed his clothing separately from ours, making sure they have been tumble dried for maximum softness.

 Made sure I’ve packed him entertainment for the journey (Lego, books etc)

 Downloaded the Butlin’s iphone app which has the full weekends entertainment, including opening times of certain activities, shows, the weekend line-up and any additional special bookable extras. Also includes a Map which is a bonus as Little man is driven mad when we get lost.

 As we haven’t been for sometime (I last went about 6 years ago) I’ve been speaking to some mummy bloggers on twitter who have been telling me what we can expect (What to avoid and what not to miss) I’d like to personally thank @TiredmummyofTwo who very considerately contacted me to ask if there was anything I wanted to ask as she was aware of my situation (please note, this isn’t someone who works for Butlins just a fellow blogger) I really am grateful that she took the time to contact me and offer that bit of support (it really is the little things that touch a person’s heart)

OK…  I’ve planed transport

 As the children’s father is now unable to attend, I’m now taking a friend who knows little man really well and is as good as family. This is important as on the Saturday I’m at the Tots100 Christmas party and my friend will take care of the children (a great mate)

 Trying to plan Sunday as-well as I possibly can as it’s Harley’s second birthday and little man can find other people’s birthdays difficult at the best of times.

 Making sure Little man knows exactly how many days in-till we leave and the times in-which we are leaving.

 Plus a host of other things that are actually rather jumbled in my head right now!

 Oh… and you better believe it! I have spent so long worrying about the Little man, plus ensuring all three children’s belongings are packed that I haven’t even thought about what I’m taking! That means packing when his at school today!

I can’t wait till everything is sorted so myself, friend and the children can look forward to our festive break which is promised to be filled with Christmas Cheer.

So… Wish me luck people! I’ll have the Mac so let’s hope that the holiday update is just that, “An Update” and a happy one at that, avoiding a festive holiday “Rant!”

How to make your own visual aid in 10 easy steps

12 Nov

Visual aids are a fantastic resource for a child on the autism spectrum and can be used in a number of ways.

This could be anything from PECs to encourage communication, reward charts for the encouragement of appropriate behaviour; schedules (whether for the whole day or just parts of it, such as school, bedtime etc…) Social stories to help prepare for change and many others.

We have used visual aids for the last few years and I discovered the true beauty of them, back when I went on the ‘Early bird plus’ parenting course for parents of children with autism & aspergers syndrome, which was ran by NAS and our local authority, a good three years ago! At first I spent a small fortune kiting us out with a load of tools, from visual cards for games to schedules and social stories. Of course when you’re a mother to a newly diagnosis child, you spend a small fortune on these things just doing what you think is right! Well, Like many I learnt the hard way, and I’ll never fork out big bucks for something that can be easily made in the comfort of your own home (Well, unless someone presents me with a well made product that’s fairly priced and sold by someone who isn’t just looking to make a quick buck from my child’s diagnosis, that is)!

We don’t use an all day schedule for Little man, though we used to, however, our life is a tad crazy at times and it becomes a little hard to follow. You see, I don’t want Little man becoming to reliant on routine, yes, routine is good and he loves it, but life cannot always be this simple and sometimes a little thing called “Life” gets in the way. Nonetheless he has one at school and also follows one to help him with his bedtime routine.

HOW IT WORKS

Little man has a chart that has a small pocket that holds a number of small cards each displaying its own symbol or image!
What’s great is, by designing your own you can completely customise it to fit around your own child’s routine (or in most bedtime cases, desired routine)! Here’s an example… Your child maybe the type of child who settles only after a story, may take medication and also have a small bath an hour before bed. You would therefore make cards that resemble these actions, plus any additional cards that symbolise other areas of the routine like… a tooth-brush, pyjamas, warm drink, toilet, kisses, lights and bed. This doesn’t even need to be in the form of pictures, your child may even prefer words! You may start with pictures and as they grow change over to text, whatever works best for you, that’s the beauty of it.

Another great aspect to the whole concept of schedules is that they work for children with and without autism. This means your child wont feel that its anything out the ordinary, especially if schedules are being used both in the home and educational setting. Children with Aspergers Syndrome especially, are quite aware of their differences and can sometimes get downhearted, I try my best not make Little man feel singled out, as-well as trying to avoid his sister feeling left out, if you know what I mean? That’s why I have ensured that both the children have a bedtime schedule as well as a chart to display their own set of targets to ensure they keep all of their pocket-money or even add to it (quite a new thing, it has its up and down weeks) this way it’s a win-win scenario as no one feels singled or left out!

HOW TO MAKE YOUR OWN SCHEDULE

I wouldn’t mind getting me own brand of schedule out there and onto the market! One that’s simple yet fun, easy to follow and doesn’t leave you feeling poor! I’m forever having ideas for schedules running away in my head, maybe because I’m always thinking of ways to make life that Little bit simpler for both little man and the family as a whole. However, life offers little time, so for now… how about I show you a dead simple way to make a bedtime schedule with nothing other than a few bits and bobs from your craft box?

WHAT YOU WILL NEED

3/4 sheets of paper or card
Velcro Dots (available from all major craft shops)
laminating sheets & laminator
PC and printer (though not essential)
brightly coloured pens
ruler (if not using a PC)
scissors
small piece of sticky tap
Glue stick
Glue Dots (Optional) can use a glue stick
some stickers for decoration (optional)

Step one: Decide which area of your child’s life will benefit most from a structured routine, then make a list of the symbols or words that make up your routine (bed, tooth-brush etc.-etc). Next you need to make the base for your main chart. You can download and print templates from an array of sites that offer free downloadable resources such as symbols, I will include some resources at the end of this post. Otherwise if you fancy getting really creative simply use a ruler to make your own (I made my own using text edit in my mac). Once you have finished printing or drawing your chart, you may wish to cut it down to size, depending on how many symbols you have to attach. We used A4 paper so cut it in half. If you have lots of symbols, keep it at A4 size.

Step two: Once you have done the above, put it to one side, its time to make your cards! These are quite small and you can make these in a number of ways…

a) Download from one of the sites given in the resource at the end of this post or check out free clip art on google! Once you have found what you want, you can then print them out.

b) Use your ruler to mark out the number of square boxes required to make up all the symbols or words in your routine (just count the number of items in your list). We made our boxes 3 by 3 cms but you could make yours bigger or smaller if desired! (If using text as opposed to symbols you may wish to make these slightly larger, you could use rectangles over squares) just make sure there is enough space to house them all on your chart.

c) If you are using instruction ‘B’ over that of ‘A’ you will then need to add the images or words to your cards! If you fancy doing a bit of a freestyling, then great… draw away, otherwise look in magazines or uses the google images ect, make some cuttings and get sticking, attaching your cuttings to the card templates. If using words, write these in nice bold lettering, or even add some small text above your symbols as I’ve done .

Step three: Now take a laminating sheet and laminate the paper containing your card templates. Note you should not have cut out your cards as yet, all should be on the same sheet of paper regardless whether you downloaded them (Step two [A]) or made them by hand (step two [b]c]).

Step four: Once laminated, cut each of your cards out and leave to one side.

Step five: Next bring forward your base chart and before laminating, you can decorate if you wish, using the brightly coloured pen (important don’t add stickers just yet).

Step six: Once decorated, laminate your chart.

Step seven: Take your Velcro dots and your glue dots (a glue stick works fine also) and glue the rough side of the velcro dot to your chart, with the other smoother side to your card. Do this for every card in your routine, these can then be attached to the Velcro on your chart.

Step eight : With a small piece of paper fold it in half and use the tape to stick down the sides and end. Apply a Velcro dot to the back and the other side to your chart , then use stickers or whatever else you fancy to decorate. This will be your envelope to store your symbol cards when not in use.

Step nine: Here’s the fun part ! Its time to decorate your chart by applying the stickers to the base chart. These can be easily removed and wont damage the chart due to its laminate casing. This will allow you to apply new stickers whenever you like, completely revamping the whole chart meaning it can therefore grow with your child and his/her changing interests.

Step Ten: Hang on the wall, choosing somewhere quite low, making sure its accessible to your child. Last but by no means least, have some fun as you but your creation to the test.

Congratulations
You just made your very own visual aid.

FREE RESOURCES  

Click on any of the links listed to uncover download resources to help you create your schedule.

Visual Aids for learning

SymbolWorld

Use visual strategies 

 Trainland

 Tinsnips

Pics4Learning

We’re planning a break away

9 Nov
A poster announcing Storm and The Hurricanes a...

Image via Wikipedia

I recently got invited to the Tots100 Christmas party for bloggers on the 10 th December which will be held at Butlins Bognor Regis during the Christmas Fantasy weekend and I can’t wait to see some of my fellow blogging friends again.

As we have been offered discounted hotel accommodation I’ve decided to make a weekend of it and the children will be accompanying me to Butlins, much to their delight.

It will be an extra special weekend as my youngest Harley will be 2 years old on the 11 th of December so he will be spending his Birthday at Butlins amongst some of his favourite people, Bob the builder being one of them (his one time true hero… His Bob bonkers).

 

 We will be doing lots of planning prior to the weekend because of course the Little man himself will be joining us. His quite excited about staying in a hotel, bless him but we will still need to ensure his fully prepared for the event of leaving home for the weekend.

I feel confident that all three children will have a great time. We have taken Little man and his sister to Butlins before, of course this was before Harley came along. He loved all the structured activities and he adored all the exciting shows over at the centre stage. Nonetheless I will still do everything to ensure all goes smoothly and this includes the choice of travel to the holiday site.

I find this is where issues arise. Little man is a massive fan of transport and his adamant that we take a coach, where I’d rather we jumped on the train, a coach will take double the time and it could spark some boredom within him and the last thing we need is a couple of rowing siblings, and that’s what tends to happen when Little man and his sister become bored.

Another thing I will need to consider carefully is the sleeping arrangements. Little man may not do well sleeping in a strange room, we have only just got him sleeping in his own room, which is a whole other post. Plus the prospect of him sharing with his sister may be a little too much to expect.

We are quite lucky some children with Asperger’s cannot cope one bit when it comes to day trips or weekends away, Little man can get a little anxious at what to expect but tends to adjust well, especially when in the company of family

 There is one thing I can promise the Little man wont be doing while at Butlins… Visiting Santa! Hell no, Little man has the tendency to ask the man with the white beard

how much he gets paid for humouring small children!

He doesn’t believe in Santa one Little bit!

 December looks set to be an awesome month for the children, what with Harley’s 2nd Birthday, a trip to Butlins and Christmas there will be lots of excitement in my house that’s for such.

Just because I love him

17 Aug

A few months back I was the lucky winner of a family ticket with camping to the Wilderness festival in Oxfordshire

 Yes, I was having a period of good fortune as I had also managed to get hold of a cybermummy ticket, won a build a bear birthday party and the fantastic prize of a £15o dove spa voucher.

This itself was a fantastic prize that I won on the awesome blog Not Supermum. The festival would commence on the 12th August and finish on the night of the 14th, meaning I would be leaving on the Friday and returning Monday morning. Given Little man’s Aspergers I considered all the options very carefully, which basically were, “Take him” or “Not take him” Of course I don’t want to leave my Little man behind and just because he has Aspergers doesn’t mean he is unable to be involved in the daily activities that you or I might participate in. I’ve always stated this opinion and continue to do so! However, I was thinking of him as opposed to anyone else, let me explain! Back in early July I was invited as a VIP guest to the Pandamonium Festival by Cadbury. The event was in Nottinghamshire and although we enjoyed the Cadbury mini games and the lavish VIP area where we sat next to the Ambassador  of China, things started to turn sour by the afternoon. A festival is a place that you can’t attend on a schedule, It just don’t happen! What with crowds, unannounced changes to a listing, and the fact that most of the time you are unaware of all the activities on site in till you arrive. This is an incredibly anxious prospect for Little Man and many others like him.

Little man is a child who manages reasonably well if his home life isn’t tightly scheduled, though we try with the help of visuals etc… It’s outside of the comfort of the four walls of our home, things become very difficult. Little mans intense need to control his environment causes him to become extremely rigid which is becoming a very tiresome for all involved. I almost had a breakdown once home from that festival, we all did including the little man himself, so, I needed to weigh things up in my mind before being any arrangements. 

If the truth be told despite any post I’ve written to assist a family embanking on a day out with a child on the spectrum I still find the whole task incredible hard for myself to apply. Many theme parks will cater to the family of a child on the spectrum, offering wrist bands to avoid queues and busy areas of the park (sometimes known as a ride access pass)!  Festivals are a very different  thing altogether.

So, after much deliberation I came to the decision that it was probably best if Little Man remained with his father who was already watching my toddler. However, I did something that some may describe as odd! I went against my instincts, choosing my desire for my child to have a weekend of fun just as his sister would. I asked him, he wanted to come! As his mother how could I possibly leave him behind?

We left for the Wilderness festival around 8 p.m Friday evening, (We meaning, myself, my friend Donna, daughter Alice-sara and my Little man) as total camping virgins.  During the drive Little man was a little anxious about speed limits and motorways. I tried my best to estimate our journey time, through I didn’t want to, as I wanted to avoid any rigid time keeping. This failed terribly as he would not rest till I gave the estimate. We hit Oxfordshire 20 minutes above schedule, giving us some extra time to now get to the beautiful Cornbury estate in Charbury the location in which the Wilderness festival would be held! I breathed a sigh of relief at the prospect of avoiding any upset from Little man. We left the A road with his beautiful array of cats eyes that provided Little Man with visual delight and entered the extremely dark bendy country lanes. The roads were dark and narrow. I love these little lanes yet, I had little time to sit back and chill in the passengers seat as Little man was becoming a little worried. Suddenly everything went very wrong, what started of as having plenty of time given the fact we had hit Oxfordshire a little quicker than first expected had now flipped the other way, we were now somehow 20 minutes over schedule. As the realisation set in that, “We were Lost” there was no hiding it from  Little man who had already worked this out for himself. Once Panic had set in, it resulted in verbal abuse, mainly at myself, followed by lots of tears. I was becoming stressed along with my poor friend who was the one driving. The other problem was, the gates were due to close for the Campsite which would result in us all spending a night in the car! Can you picture it? Its a terrifying vision and one I would rather not live out!

Thankfully the lovely people at Wilderness took one look at my face and Im guessing that of little mans (That displayed a string of emotions) and my guess is, wanting to avoid the tantrum that was so obviously brewing,  had then decided to let us in! Well, it was this or maybe the fact they felt sorry for my poor daughter who had basically slept all the way from London and was now stood with a blanket around her, eyes still closed and shivering like a ice cube. Whatever the reason, I was most grateful to them when they ushered us in.

However it wasn’t a case of getting in, unpacking and jumping into a nice warm bed! Remember we’re camping here, and we are, “camping virgins!” Myself and my friend were yet to embank on our challenge of attempting to put up the tent. Lets just say that little man had good reason to blow up when we were still trying to work the stupid thing out some two hours later, (seriously not kidding, even I had a mini tantrum by this point, which largely consisted of me kicking tent pegs in sheer anger). Well, at least my daughter didn’t complain, nope she was in here sleeping bag embracing the whole camping experience by snoring under the full moon.

The festival was great, It had that hippy chick, carefree feel about it. Dress crazy, dance like a idiot, or sit and debate politics through the small hours, no one cares! This attitude makes life so doable even if it is just for them few days! I love that happy festival atmosphere. That’s the good thing about this type of festival, No one stares or makes judgements when little man is having a hard time! My parenting skills are not judged, “If they were at least they were discreet about it!” Honestly, I met some really nice laid back people.

The overall location was idilic, what with beautiful swimming lakes where I embraced the whole ‘Wilderness’ theme by freezing my arse off while being nibbled by crayfish, as Little man sat watching alongside my friend, (only myself and my daughter braved the cold waters and its many residents).

Another area of concern was Little mans fussy eating. He will not eat anything cold or packed in a cool box, knowing the festival would be selling food at normal “Festival prices” I was aware that we would need to embank on daily journeys to the nearest local takeout to be sure he ate.

As expected the festival wasn’t the type of event that you would find people following a routine, just like my true personality, people were spontaneous, taking things how and when they came. This may have been perfectly fitting for me if I were alone,though it’s been so long since I have indulged in such spirited self-being, that I probably wouldn’t know how! The point, “I wasn’t alone!” Of course the problems Little man had with the lack of routine were displayed through eruptions of unpredictable behaviours! He hit his sister and swore so loudly that he may of been heard from those back in London! There where moments that he coped and enjoyed those activities that he coped with, though the majority he did not handle well t all! Of course I understand its hard for him, yet I’m human and could not help feeling somewhat restricted from the events taking place around me. I often found myself feeling a tad sorry for myself! Though it would pass within seconds, I needed to think of Little man and ways to improve the situation.

I myself felt some strong emotions come over me during the festival. At times I was so goddamn angry at Little man as he swore and called me horrific names! Others times my heart arched, I longed for my son discover a world of enjoyment as oppose to fear and anticipation that nearly always tipped into huge bouts of anger, accompanied by meltdowns

Despite this I tried my best to give them both a good time and see it through to the end. We did it (Well, we left the night before we had to) This wasn’t due to little man but just the connivence of avoiding morning traffic on the busy M25.

I pray that one day, my son be be able to enjoy events fully like those  such as the Wilderness festival! I hope over time we help little man develop the skills needed to enable him to deal with his anxiety and hopefully reduce it.

Would I take him again?

Yes, if he wanted to, I would?

Why?

Because his my son and I love him, Its as simple as that!

Falling Apart

15 Jun

This post is totally extemporaneous! There was no draft, theme nor great idea.

Yet here I am writing, undecided if I’ll even publish this! I guess if you’re reading this then I must have got adventures, that or damn right brave!

You see, right at this very moment I’m apprehensive, somewhat stressed, extremely exhausted and in all earnestness, a little angry. I therefore apologise in-advance for any rambling nonsense that makes no sense to you, like it does to me.

Right now I feel the need to express myself, yet I have this inability to verbalise what it is I need to say. Who it is I need to say it to is beyond me… So, I’ll just write it here instead!

These past few weeks have been crazy, I dunno where my heads at right now! One part of me has been excited about all the great stuff going on, what with the Mad blog awards and the achievement of having been shortlisted in two categories, “Most Inspiring” and the big one “Blogger of the year. Then there’s the fact I’m off to Cybermummy on the 25th thanks to the lovely people at lego duplo! The other part of me resembles that of a total stress head.

I know we all have weeks like these, the not so good ones, but I’m really struggling to get my mind frame as it should be!

Sometimes I read post and comments that relate to myself and the blog… Some write some awesome things, giving me credit for the way I parent and handle life’s challenges. Although these comments uplift me, encourage me and make me smile, I somehow feel a cheat for allowing such presumptions to be made.

Why? I’m no super-mummy, far from it! Sometimes I questions my ability to do this whole mothering lark, but don’t we all at some point? I know I’ve come a long way emotionally in these past few years, I’ve had to! Yet there are them times I feel like I’m running on a treadmill going faster and faster, so fast I can’t keep up. I keep going till suddenly someone presses the button and I fall of! When I’m off, I struggle to get back on.

People need to know the whole me, I’m human though sometimes I feel far from it. I make mistakes and sometimes I wish I had done things differently!

To think that a great deal of you find me and the blog inspiring means more to me then some will ever know. Days such as yesterday I fail to see myself in such a light, especially when I found myself absconding to the safety of my bedroom, closing the door behind me, sinking to the ground and sobbing like a baby! Take last week for an example… Having just attended another independent assessment (OT) with little man (not a great assessment) Little man become anxious when I took a couple of wrong turns getting us a tad lost! A stream of obscenities were thrown my way. They kept coming at me faster and each more shocking than the last… I was stood outside Loui Vuitton on New Bond Street, sobbing into my hands (and this wasn’t over my realisation that the beautiful Loui Vuitton oversized bag in the window would never be apart of my life, though this did make me a little sad) I should have been calming him, ignoring the shocked faces of the appalled public and as I normally would… Got on with it!

It takes a lot to get me on this level, things a lot worse have happened in-which I’ve dealt with in a calmer manner! You take so much, then that one thing just does it, makes you snap… no matter what the magnitude! These are the times I am overcome with guilt and question my ability to manage! I then feel selfish that its me I’m thinking about as opposed to him! Do you know how hard that is?

Wow, seriously I haven’t slept in nights, maybe that’s my reason for this, “I feel so sorry for myself post” Maybe this attempt of a post, will be one I regret! The post you wished you never wrote… We all have them… Don’t we?

I’m not to sure how this post is planning out, what it sounds like! I’ve not read a bit back nor corrected one-off those spelling mistakes I see as its been so kindly underlined in red (cheers Mac) I’m In a zone… and for all I know this could sound like complete and utter, “Shit!” I feel a certain amount of pressure removed from my head, does that mean I’m almost done? All these worries I have manifesting together as to create one huge headache have been difficult to shift. I have struggled to partition each into its own place dealing with each issue one at a time… In actual fact… I feel close to crazy!

Little man has had a grand total of nine explosive meltdowns in a little under a two-week period. These have impacted on the whole family, each one off us getting to grips with it as best we can. Meltdowns have been had for an array of reasons, such as… Stressful OT assessment; the issue of me getting lost on the monopoly board; a line failure on the jubilee line; a broken down bus; late school transport and complete lack of sleep.

These issues may well seem trivial to some, but to little man they are real everyday factors that cause him distress. Can you imagine how hard that must be, the loss all control, the struggle to self regulate your emotions… I wish people would consider such things when staring, judging or worse laughing, this only makes him worse. (Yes, sadly some find it amusing!)

As well as the meltdowns I’m unhappy to report a more worrisome issue! Given Little man’s anxiety and his inability to get much sleep has unfortunately lead to two panic attack. I felt both helpless and guilty at not being able to keep him safe from such horrible attacks. Both occurred in the small hours and when he begged for an ambulance, I almost complied! Being a person who has suffered from these attacks from a very young child… I was able to distinguish  between a medical emergency and anxiety. He felt at ten years old like he was having a heart attack as electric had entered his body and was unable to get out. (It hadn’t bless him.) He paces, opened doors and windows in a desperate attempt to breathe … It took some time but we got through them together!

Sleeping like a baby, I looked at my child laid on my bed now so peaceful. I wondered what I needed to do next? What does the foreseeable future hold for my child? I slide down the bed to the floor cried, not just a bit but more tears than I knew possible… I felt so lost a feeling I haven’t felt for such a long time! I was worried what tomorrow would bring, would he endure the same thing?

Right now I hated the big man In the sky, for my son is just a child, why can’t he be left alone!

The Highs And Lows…2010 in a nutshell (part 1)

31 Dec

What a year!!!

So much has happened in 2010 and looking back through my diary and reading some past post, I’m shocked at how much we’ve squeezed in!

Though it’s pretty clear from my reading that sadly the lows far out weigh the highs… …  It’s still them few highs that I believe have kept me sane throughout 2010 and helped my family pull itself through them Oh to many low days!

So Now I attempt to write a post that looks back over the 12 months of 2010…Regular readers can reminisce alongside me and those of you that are new hear can discover life so far in a nutshell!

January….

… The year 2010 started off as an amazing one! With my new son born on the 11th December 2009… I couldn’t have been happier. Little man was and still is crazy about his little bro. My family was complete, with three beautiful children I wanted for nothing. Sadly my baby became quite ill in the January at just 5 weeks old he had a bad chest infection (Severe Bronchiolitis), refusing to take a feed or just vomiting the whole thing up (exorcist style) we took him to hospital… Where we stayed for the next week and a half. He was fitted with a feeding tube that went through his nose, and had to be given oxygen for hours at a time to keep his stats up. I worried about my baby so much… But also had the added worry about leaving little man and his sister for so long. How would little man cope with seeing his baby brother with all these tubes? of course I worried about my daughter who was almost 7 but I knew she was stronger than her brother in terms of managing with her feeling and fears, She found it easier to discuss her fears and ask questions on things that would worry her (She was much easier to reassure and comfort during times like these)

The children visited and I would do my best to reassure them their baby brother was recovering well. Little man was becaming very distressed with the sight of all the tubes, as was his sister. A few days into our stay the baby got worse and contracted H1N1 and pneumonia. Myself and his father tried to stay strong for the sake of the children but we were going out of our minds with worry . A no visitors rule was imposed… Only myself (who stayed at the hospital) and his father were able to be with the baby. Little man was broken he couldn’t visit his brother and worried himself sick. His father would come and stay with the baby for a few hours while I would spend them few hours with the children. It was an incredibly hard month!

At last our baby came home and slowly I settled back into a routine of being a mummy of three.




February ….

… Having baby back home was  amazing. Little man had been having a few issues at school during January but I put this down to the change in routine (me staying with the baby at the hospital ect…) However things went belly up after extensive works started on our house. Our ceiling had fallen down in 2009 and was still not complete and the Walls had now started caving in around us. The job was a huge one that meant knocking down all remaining plaster (taking the walls back to brick) and re-doing them all from scratch! Works were planed to take a week. This was no place for a recovering baby and two young children… One who had sensory sensitivity… we knew we couldn’t stay and moved to my mothers. I visited my home every few days to check on things and collect my post ect.. I would leave in tears as it was like a builder’s yard with massive piles of dust. The works went way over schedule & we were at my mothers for what felt like forever! (No offence to my mum but we needed to go home)

Little man was stressed all he wanted was to be at home. Problems at school grew more difficult and I noticed I was getting more and more phone calls & letters from the Head & Deputy Head teacher. I wanted to ask the LEA to assess but was told by his school the LEA would not agree as there was more the school could be doing. Little man was given two unofficial exclusions on this particular month. Looking back now It’s very clear to me he was dealing with a hell of a lot and wasn’t handling stuff as well as I may of thought he was at the time… We were not at home and everything was different. Yet he was keen to attend school for the first time ever… He had even started to make some friends.


March….

… On the 1st March I made a parental request for a statutory assessment. Outreach services were asked to come in to school to observe, advise the school and work with Little man. This was the month Little man received his first official fixed term exclusion on the 3rd March… Things just kept getting worse. The relationship between myself and school was rapidly breaking down over my concerns about the lack of support and understanding that was being given to my son. On the 18th of March little man received his second fix term exclusion… And at the end of March I attend court for non school attendance for the period June-Dec 2009 (Little man was not sleeping at all and refused to attend school daily) As I stood in court like some harden criminal being fined… The school was busy imposing the third exclusion of the month via voicemail… Little man’s third exclusion within a few short weeks! Things were serious.

April…

… It was nice to get away from the stress of Little man’s school situation even if it was for just a few short weeks! Unlike many parents, I found myself dreading the Easter Half term coming to an end & the children having to return to school. It was nearing the end of April when Little man returned (two days after his peers as he was given a 4 day exclusion at the end of March that carried over to the new term) From the word go we encountered problems. I had a meeting at school which didn’t go well, I found myself losing trust in the school, and I felt though things were serious but no one was taking it that way as every concern was brushed aside! Little man was now always angry and his self-esteem was at an all time low. The LEA were not following the statutory time limits when it came to the six-week time limit for making a decision on if/if not to assess Little mans Special Educational Needs under the Ed Act 96 & the code of practice! I found myself having to chase people for answers… Only to then be told that they have decided to take it to panel on the 17th May weeks after the required time frame with no explanation offered! I felt like I couldn’t enjoy my new son due to always suffering the worry of the phone ringing, the fear of further exclusions or being asked to prepare my child to miss his break/lunch time or both, normally for incidents said to have happened a day or more before… I was becoming so down and feared that depression was setting in.

It There was one or two highs to the month… My birthday and spending it with the children, and the phone call informing me I had been accepted onto the Early Bird plus programme (dispute Little man being a tad over the age limit)

was world autism month and I was busy raising awareness for autism through blogging and my facebook group (that seemed to be touching the lives of more and more families thanks to the great support of members and the fantastic admins now on board)I started to notice that over time I had required some truly inspirational contacts & friends, who are some of the nicest, kindest people I know… All because of Autism.

May….

… For me, May was the month that I thought… “Can it get any worse?”,  “Was the straw that broke the camels back” so to speak! Having Only just returned from exclusion a few weeks pervious the exclusions started up again! On the 5th of May my little dude was excluded for one day! This was also the month the Allotment project started, resulting in what I can only describe as continuous acts of discrimination. Little man was either brought back from the allotment… With the school only informing me of such incidents a week or more later… Or he wasn’t taken at all. There were also weeks he found himself excluded on the same day as the project took place. Little man was given two exclusion this month on the 5th and 13th. We had a multidisciplinary meeting at school at the end of the month and it was agreed that the school could not meet my child’s needs, yet….  It was also this month that I found myself yet again chasing up the LEAs decision on the statutory assessment. I finally discovered by phone the request had been refused on the grounds his school could meet his current level of need and he was making adequate progress. This was my first real insight into the sheer twisted system supplied by LEAs… There was penalty more insights to come!

Although things were appalling at school, I started to gain more skills through the parenting classes for parents off children on the autism spectrum (Early Bird Plus) Meeting other parents who nodded when I spoke because they related to what it was I was saying was just heavenly. This was one of my reasons for creating the blog and the magnificent Facebook page… “I just love that page” I wanted to connect people as it can be a pretty lonely world if no one relates to you or your child, even if they pretend they do!.. Meeting parents of children like mine was uplifting and really brought me up from the lowness I had recently started feeling. I could speak to the staff running the programme without judgement, they even visited me at home… I was shown how to create social stories & the benefits of using visual aids (That we now can’t do without) I looked forward to Tuesdays and remain extremely grateful to the staff for agreeing to my attendance on such a beneficial programme.


June…

… After yet another blissful Half term… The children returned to school. Little mans sleeping problems were really showing its ugly head once more… despite the use of Melatonin. The month of June showed little or no improvement with the schools over use of exclusions… They just refused to take note on the effect they had! It was only impacting on his own mental well-being and his behaviour become more challenging not less. At home he was starting to have huge meltdowns and failing to cope with any day trips through fear of being rejected from them (even with his own family… he had lost all faith) Little man was excluded once again a few days into his return to school on the 10th of June (another allotment trip consequently lost) The LEA carried on rule breaking, resulting in letter writing on my part as a way to obtain the important letter refusing to assess in order to appeal to the tribunal… This I finally received it at the end of June.

Although things seem less than rosy in June it had a number of perks… Things may have gone overly sour in regards to Little mans education, but things started to look up for me and the family as a whole. I received an email from Nas inviting me to be interviewed for the training course to enable me to become an adviser for the Advocacy for education TSS service (Tribunal support service) We also received a fabulous gift from Merlin’s magic wand… Four tickets to Chessington World Of Adventures was much appreciated, and brought huge smiles of happiness across Little man and little sisters face! The sound of pure excitement filled the house and gave the family something fun to look forward to. Merlin’s went all out and helped us make up for all the school trips and activities my little dude was currently missing. The plan was to take the children to the theme park during the summer holidays that were almost upon us.


Well…… As you can see and it isn’t for me not trying… I just can’t seem to pack one long busy year into one single post without achieving some kind of world record for the worlds longest blog post (That’s if I don’t already hold the title!) So…. Time for me to wrap this up and continue from July through to December in part 2 tomorrow (Well it will give me something to do 🙂 ) I’m hoping you will all return to read about the highs and low of the last 6 months of 2010 🙂

TO BE CONTINUED…………

What is Asperger’s syndrome ?

24 Nov

Asperger’s is a communication disorder.  Someone with AS would have poor social skills that family and friends may be able to spot from a young age but in most cases these poor social skills become more and more apparent as the child grows older. My son is now 8yrs old and yes i would say that AS has become more apparent in these last few years .

A child with AS may seem withdrawn wanting to play alone or the child may be loud and annoying to peers. A child with AS may seem a loner. Nearly all children with AS with have a special interest. This special interest will  dominate the child’s conversation meaning he/she wants to speak only about there interest. The person with AS will know a great deal of information on this topic/interest. My son has always loved trains and bus. It sounds silly but it is the working off the doors my son is most interested in. He can speak about how they work for hours and hours. He also could tell you where each bus is heading and all the stops on each train line.

Sensory sensitivity, Motor clumsiness, Routine and Language are just a few more things a child with AS may have problems with. Im sure we will touch on all these somewhere along in this blog.

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