Tag Archives: Asperger’s

The Challenges That Come With Independence

12 Oct

So, its been a while since I blogged, all reasons beyond my control.
Well, Little man is officially a teenager now. On the 1st October he turned 13.
As a result his special school felt that he was ready to make a huge step forward into the world of independence.
Instead of of being collected by the school bus every morning he would walk to the train station through the park, take the 20 minute train ride followed by short 5 minute walk to school. Was I hesitant? Of course I was, what mother wouldn’t be? You see, little man had an intense ‘Special’ interest in trains that lasted many years. He was therefore very excited about this big new step he would be taking! Me I was worried sick that firstly we may find him over obsessing about transport once more. It may seem harmless to most but when a child with Aspergers is obsessive nothing else in the world matters.

This however was not my only concern! Little man is a child that struggles to sleep of a night time and if he had experienced one of he’s ‘All Nighters’ then how could I possibly let him ride the train to school? He could fall asleep and spend hours going back and forth to Hayes and Central London… What if he woke up in central london? At least if he was getting collected our morning battle would come to an end once I’d physically removed him from his bed and got him on the transport. But he hated everything about the new transport system, the one he had been placed on this September with little warning of any changes! Little man was used to taking a taxi with two other children and an escort which is provided for by the councils SEN team. This September no more than one day before the return to school he discovers that his escort has gone and will be replaced by another. He also discovers that there is no longer a taxi but a mini bus with a new driver and a heap more kids too. The battles to get him onto the bus were anything but easy! The last week before his independence training started someone from the SEN travel coordination team called me to say that little man was on his last warning! Apparently the new escort couldn’t handle the children, especially little man. I hear a fight broke out between my son and another boy. As a result the escort was pushed (not by little man but another child who as a result had been taken of the bus for good).

So, with this and little man’s pleas I decided that the transport plan drawn up by the school would probably be best at this current time.

To cut a long story short, since little mans been taking the train his had more days off than I care to remember! The first few days were fine. He loved the feeling of independence traveling to school gave him (he still does) however, his sleep pattern has once more gone up the wall and getting him out the door has been a fight that I’m losing. Even when he has left for school his been leaving late. With this and the constant warnings, Little man is on his very last chance and this time its with me!

I’ve made the decision to reintroduce the melatonin despite how its effects make him more drowsy during the school day. What else can I do? It gets to 4 am and I’m seriously at my wits end! Just the other night (well, I say ‘night’ but really mean early morning) I found myself screaming at him… “Why can’t you just go to sleep?” Only for him to look and me and reply “I want to but I can’t… I just cant.” its frustrating… Its frustrating for him, for me… And for the school, especially when they can see his a bright young boy with heaps of potential.

I find myself becoming so angry at life, for we go through these battles, get over them only for them to resurface months later. Its one hell of a rollercoaster, one I have no choice in riding.

Little man doesn’t tend to talk about thinks that may have upset or confused him during the school day, which sadly can lead to all sorts of difficulties, leaving me playing the private eye game. Switching of isn’t easy for most, especially when we have worries and troubles laying heavily on our minds. This for little man, a boy who has difficulties expressing them worries, a boy who already lacks precious sleeping hours, is a struggle on a level most would fail to reach. Its stuff as such as this that makes those morning and night battles that little more difficult than it currently is.

I do sometimes wonder how many other parents there are out there… Going through the same nightly and morning battles that we do. I know there are plenty but at times its a real lonely place.

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Tips For Parents Of A Child Entering The Assessment Process.”

18 Aug

1) No child should receive an Aspergers diagnosis on a first appointment or assessment. That’s not to say it doesn’t happen. Yes, you maybe dead certain it’s Aspergers though professionals have a duty to explore every avenue and give your child a detailed assessment clearly observing them and then providing you the parent with a detailed document of his or her findings.

2) Be prepared, its likely (what with these awful cuts) that your child will not see the same psychologist more than once. You will feel that the continuous string of professionals are not making the assessment process any easier when you find yourselves being bombarded with the same questions over and over. ‘Yes we often ask ourselves… Do these people communicate with each other’

3) When assessing a school age child for Aspergers the team involved will usually request feedback from your child’s teaching team and school SENCO. Is your child’s school acknowledging your child’s condition? If not this can really slow the entire assessment process down. In the end the communication team at CAMHS had to go into my sons school to assess how he coped and acted in the school environment.

4) Remain on the ball. Often we are Frobed off by professionals with statements like they are awaiting a certain professional to get back to them or an appointment slot for your child to meet with the SALT therapist for an assessment. It’s at this times you often find yourselves dangling in thin air and before you even realise it its been months… Your slowly slipping through the net. Bombard the team working with your child with daily phone calls. Who cares if we are getting on their nerves? If we are silent we are forgotten and no one wants to be forgotten.

5) Keep all reports and assessment papers and letters filed within their own folder. This will help you to stay ontop of things. You will have dates at hand and be able to produce any needed documents at ease.

6) Keep your own written records. I’ve found that I’ve been told a lot of stuff of the record that could Potentially help my child but won’t in its undocumented state. I therefore make everything formal but taking notes at every meeting, during phone calls and any other time my child’s case is up for discussion.

7) Try not to miss important appointments as you will often find that its months before contact is even made and new appointments given.

8) Ask questions no matter how silly you think they may sound.

9) Trust Your Instincts. If you don’t agree with the professionals conclusions its your right to ask for a second opinion.

10) Its a long road, be prepared, don’t just go with it, be part of it! After all its your child and diagnosis could be a way to the services you require.

Sleeping Issues

16 Jul

Having a child with Aspergers can be difficult but having one that hardly sleeps is Incredibly trying.

For this reason little man’s school attendance is suffering and so am I… Big time!

Its one huge battle to get the boy to bed of a night and another to get him up. His like a monster in the mornings, swearing and throwing things about.

As his grown so has the problem. His now as tall as myself so grabbing the covers, carrying him out of bed and then physically dressing him is no longer an option! Well that is unless I want to live! Not only am I going to land myself back in court for little man’s shabby attendance I’m also struggling to get anything done during the day. Shopping is already a nightmare and I’ve given up on taking little man some time ago. This means just a quick trip to the shops has become some type of mission… One I’m not to keen on taking.

With this I have no choice but to visit the doctor and request a prescription of melatonin. Its not fantastic but given his had a good break from it, its effects will be beneficial over the next week or so at least.

So… If all the above wasn’t bad enough Little man is now spending his days bullying his younger brother rather than getting an education. Its not bully as such, its just his need for control and when his not at school or in bed catching up on the sleep his lost his doing exactly that… Trying to control everything everybody does. Its tiresome!

We are now in July and what happens in July? Little man starts preparing for his big day… Aka his birthday. Its three whole months away but that don’t make a difference… Not for the little man it doesn’t!

This year his talking computers… Macs to be precise. Yes, his not asking for anything cheap here and I think I preferred it when he was asking for them strange and wonderful items such as batteries and staple guns! There is one good thing to come out of the obsessive birthday chatter! If he wants something on such a grand scale his going to need to go to bed earlier and attend school everyday! After all he only has a week left till the holidays.

So… There you have it! Sorry its such a mini update but as you may have noticed, I don’t have so much time to get on and blog these days. Here’s hoping the next instalment is a little more upbeat.

A Bright Star No Longer Hidden

22 Jun

The annual review, a time for meeting with your child’s teachers and discussing progress, struggles and ideas. A meeting centred around your child’s special educational needs and the statement they hold.

Last week it was that time, the time for the Little man’s second annual review since attending his special independent school specifically for children on the autism spectrum. Lately, Little man’s attendance has been a little off the wall! Despite his love for his new school he continues to struggle to sleep of a night, often getting just a few hours sleep or none whatsoever. As one can imagine, mornings are becoming one huge battle us! For this reason alone I expected to hear how my son was falling dangerously behind that of his peers, what with his last school (mainstream primary school) insisting he had a reading age of 7, reception age writing skills, poor understanding of science and history, plus 2 levels below in maths and more besides. He was 10 at the time and I protested that my son wasn’t this far behind, especially in maths. His bedroom wall looked like some kind of number puzzle where he would cover it in mathematical problem solving and coding to a complex level (one even I struggled to understand)!

You see it was my conclusion that he was much brighter than he let on, but wasn’t showing this due to his unhappiness while attending a school who seriously struggled to meet any of his needs, both educational and developmental. It was during this particular annual review meeting that I realised just how right I was back then.

Here it comes… A seriously proud mummy moment…

Little man is two levels above his expect national curriculum level in maths. He is in year 7 and currently has a level of a child in year 9 on his way to year 10.

His also above in PE, Reading and more besides. He science levels were that of his expected age. English as a whole is also what is expected which just goes to show that my boy and any other child on the spectrum has the ability to shine given they are in the right environment to do so.

He has a great new system in which he can remove himself from the classroom to shake of any problems and excess energy with a run around the playground. He only has the ability to use his “Get Out Of Glass Card” twice for each lesson and teachers have reported that sometimes he finishes class having not used one. This may seem like such a minor thing but to a mum like me its pure music to my ears.

He also has a great reward system and school are working hard to try and discourage his swearing. Despite episodes still happening on a daily basis the improvements are slowly taking place and little man’s learning a little self control.

Proud… Oh yes, seriously proud! When your so used to being told the negative when it comes to your child’s education, you forget what its like to hear anything positive. This was a great example of this, it was the proudest I’d felt for a long time. I just wanted to shout about it from the roof tops.

Was I tempted to take a little walk through them office doors of his once mainstream school, the one in which his younger sister attends? Did I feel to wave his report in the air while shouting “Yer… Get a load of that! Thats my boy they are writing about!” Um maybe I did, just a little…I can’t lie. However, I don’t care what was once said! All that matters is that I have always believed in him even if those others who should have, instead made it their mission to write him off as a lost cause!

Well… Eat My Shorts!

My boys a star, a star that shines bright because his no longer hidden.

So, if you have a bright star that is currently struggling to be seen through the clouds then don’t give up on them! Believing is the key to your child’s educational success and as long as you believe others will follow. Never give up, fight for them to be seen as the star you know them to be.

Shutting Down

22 May

I’ve been pretty silent, I know! Its not like me, not to blog for long periods of time, but these past few weeks have been different! I’ve actually been completely out the loop when it comes to social networking, my tweets have been few and far between and Facebook has been left unvisited.

I’m not to busy, I won’t lie! I’m not on holiday or having some girly time someplace fun. I’m at home, in pyjamas on the sofa mostly.

In my everyday life, my social commitments have suffered too. I’m not spending much time with friends, I’m not even answering my mobile or home phone when somebody calls. Its actually really stupid but I haven’t been able to complete the smallest of tasks. I dread having to do almost anything.

That’s how I knew…. The signs are all there, ones I’ve experienced before making them so apparent this time! Depression… I was depressed and knew I had to do something about it, and do so fast. But that was just it… I was lacking any get up and go which meant that the prospect of visiting a doctor or even booking an appointment to see one was all to much to bare.

Thankfully, I’m starting to feel myself again and though it will take some time to get on top of it all, I’ve started and that’s the hardest bit done.

So, why was she depressed, you may ask? Many assume its the pressures of parenting a child on the autism spectrum but for me that’s a little bit of a cop out. I’ve been parenting little man for almost 13 years. Since the age of 18 its been my life. I’ve since had two more children and being a mother to all three of my children has brought great joy into my life. Yes, when little man is refusing to get up from his bed or even leave the house of a morning I do feel a tad close to breaking point, but guess what? Its not made me depressed… I don’t think it has anyway!

The truth is, life can be a bit full on somedays and when all your problems collide that’s when things go a bit tits up. I can’t put my finger on just one thing and say its this whats caused this depressive period. That’s impossible!

With deadlines looming for reviews and guest post, I just shut off. This blog and that of my other were left at times for days without a post. With my hair thinning at age 31 years and my doctor telling me it was down to stress I just had to let go a little and remember what it was like to be me again.

I love blogging, that much I’m sure off. I just wanted to take a little me time in order to remember that.

So here’s to the continuation of blogging… Here’s to me smiling again.

Oh, and before I drop off, a message for the world! “If you ever feel like your slipping into a black hole of depression then act quickly to nip it in the bud! Many of us are not visiting our GPs, mainly due to the stigma associated with depression! Just remember its an illness and lucky enough its a fixable one too! To be the best we possible can we need to feel our best… Fact!

Life In The Spectrum Bubble

10 May

Maybe you’ve noticed, maybe you haven’t, that this blogger hasn’t been the most active these past few weeks? I’m not being lazy, experiencing writers block or falling behind! No, I’ve simply been taking time out, working on other things!

As a parent, especially to one on the autism spectrum you sometimes feel as if your whole life is taken up with social skills training, advocating, battles and special interests. You find it difficult to shut off your mind, think about anything else, take real time for you, yourself as a person.

This isn’t a good thing, we all need to just be ourselves, doing some of the things we love from time to time. Its not that I don’t love parenting my son as I do his siblings, and it isn’t because I dislike blogging because, actually… I love it! I just needed a little me time.

Things at home haven’t been too eventful… If anything drama levels have remained reasonably low so I don’t have much in the way of news to report. Little man has been experiencing some sleepless nights (as usual). What’s worse is his been experiencing some awful toothache and this has affected him badly. He is very sensitive to this type of pain and is having difficulty coping with it. His senses are in overdrive, and with refusal to see the dentist I think we are both at our wits end.

I also got a letter from his school today threatening court action. Little man’s attendance is well below but when his refusing to sleep and then attacking me as I try to pull him from his bed of a morning it isn’t the easiest task to undertake. Its not that little man dislikes school because he actually quite likes it. However, changes such as new children in his cab, new teaching staff and friends leaving, makes little man want to shut the world out.

Between looking after little man and the toddler during the day, I’ve also been busy working on my own stuff. Myself and a friend have been doing some selling at bootfairs, vintage fairs and craft markets, selling mainly that of vintage items, jewellery and other lovely bits. I actually love doing this, especially during the warmer months. Not only does it raise some much needed funds but it gets me out doing something, meeting new people.

We have to remember that just because we are parents of children on the autism spectrum, it doesn’t mean we can’t have interests, time spent on other stuff! We should be able to do this without feeling guilty too.

I’m not denying that when your child is on the autism spectrum life becomes a bit more hectic, it does! However, you adjust and adapt, making routines and adjustments as best you can.

Its easy to find yourself stuck in the autism bubble, you’ve just got to pop it, remembering that before your child’s diagnosis you concentrated on other stuff! After all,its not healthy to do nothing but study the best therapies and educational resources all day long.

We are far better parents when we are more relaxed, free from stress and happy overall.

All my children need a sane mummy… And I’m just working hard to avoid myself becoming anything other than that! After all I’ve been there and it isn’t a pretty place!

Changing

23 Apr

A teenage terror!

Is terror a little harsh a word? Um, No, Probably not!

I myself went from a sweet little girl with pigtails to some unrecognisable rebellious monster with too many hormones! Ok, I gave my mum headache for a couple of years but then I got it out my system and grew up.

Nonetheless, I do remember the total chaos I caused in the house. My terrible attitude and stinking mood swings. Now as a mother I’m totally crapping myself at whats to come.

Little man is 12. His almost a teenager and already seems to be experiencing the changes puberty brings.

For many years family and friends have commented that when Little man becomes challenging he displays the many traits of a teenage boy. For this reason and others i’m left asking myself the question… “is the mix of Asperger’s traits and those of puberty going to create an explosive combination?”

Meltdowns are already highly charged. A trigger, depending on what it is, can spark some of the most explosive meltdowns that go on for hours on end. Will these triggers become more heightened or will we be faced with new ones all together?

I’ve already started to notice changes in little man’s behaviour. Having worked extremely hard to master the signs, these are now becoming harder to spot. Its that feeling that your walking on eggshells that or there is some ticking time bomb in the room.

I am extremely grateful to little man’s school. If he never had this placement he may have had to struggle through secondary school. For some children with Aspergers this can be a trying experience! I guess what I’m trying to say is at least he is in a supportive school who can help him through those sometimes confusing teenage years. This is one less thing to worry about.

But its not just meltdowns and mood swings that concern me. As a mother of a teenage boy I worry about all the normal stuff but then with Aspergers thrown into the mix I guess I worry a tad more. For one, there’s the issue of girls… Just because his on the autism spectrum doesn’t mean he won’t experience all those new and confusing feelings when it comes to the opposite sex.

Little man can be somewhat blunt when it comes to saying what he thinks so here’s hoping social skills training will make this area of concern less of a problem.

Changing bodies, feelings and an injection of hormones are sure to bring about a some important lessons for little man and of course for me, his mother.

We are currently working on issues surrounding personal hygiene. With tactile defensiveness little man absolutely hates to bath. He loves to use a power shower and this is something I’m currently requesting from the housing association (which isn’t a walk in the park). Having a shower fitment would make the world of difference to us as a family. Instead of wrestling him into a bubble filled tub, I’d instead have to wrestle him out of the shower. Both myself and his father have both talked with little man about the importance of personal hygiene, especially as he gets older. His already Experimenting with different brands of deodorants because as dad clearly stated… ‘No body likes to be friends with somebody who smells of BO’

As for sex education, the school have already began to teach little man and his peers the basics. There has already been lots of discussions on how their bodies will change as they go through puberty so that there will be no surprises or sudden shocks in the future.

Just yesterday little man informed me that he was developing a few teenage spots that were completely normal for a boy of his age. We talked about the importance of washing his face and reframing from spot popping to which he responded with, ‘ Yuck… I won’t pop them thats disgusting!’ Yes I too was pleased we agreed on something.

I don’t know what these teenage years hold for us. But like everything, its just a case of taking the rough with the smooth. No doubt there will be problems but I’m guessing there will be many achievements made by little man along the way.

These are the years in which little man will become a not so little man. The lessons both myself as his parent and his school teach him, will now be some of the most important to date! Now is the time to work together to get it right, shaping my little man for the future. The end results… A promising life as an independent working adult who looks forward to life’s little surprises instead of fearing them.

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#silentsunday

21 Apr

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Little Man Gets Busy In The Kitchen

19 Apr

If you read the blog you will know that since little man has been attending his new special school, we have discovered his got rather good skills in the kitchen.

That’s right, his becoming a bit of a master chef and whats more he enjoys the activity of cooking and baking.

A few weeks back we were contacted by someone involved in the cooking with kids campaign creates by ‘The great british chefs‘ in conjunction with Tesco. The campaign is all about encouraging parents to cook with their children as a way of encouraging not only healthy eating but also food education. It provides the perfect bonding activity (unless you’re child’s like little man, not allowing you a single look in)!

There is a whole web page of child friendly recipes to create from yummy dinners to delightful desserts and cakes.

I suggested to the Little guy that we give it a go and as expected he was up for challenge.

Only instead of selecting a recipe requiring lots of ingredients, we opted for one of the more simplistic options available… so much so there was no cooking or even baking involved whatsoever! It wasn’t because we just wanted to speedily put together something simple… the recipe we chose was one that not only looked delicious within the imaging displayed on the Great British Chefs website, but something we hadn’t ever thought about trying before.

This was a recipe for strawberry sundaes, only slightly different from the norm, as these were created with yogurt and oats (Granola) instead of that of ice cream which we would always normally use when pulling together a sundae.

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The sundae recipe has been created by Gavin Brothers especially for the campaign which is running in conjunction with Tescos. The recipe introduction reads, “This strawberry sundae recipe is a fantastic breakfast treat, as instead of ice cream, there’s yoghurt and granola. Quick to prepare, even for little hands, they make a nice, healthy mid-day snack for children. Feel free to experiment with other seasonal berries and fruits”

So here’s the few ingredients needed to create this relatively healthy alternative to the traditional strawberry ice cream sundae…

160g of granola
250g of low fat strawberry yoghurt
150g of strawberries
20g of icing sugar

This is said to feed a family of 4 (sundaes served in a tall glass)

We however used our sundae glasses which look much taller than the ones used for this recipe, so we had to increase our ingredients slightly.

Here’s what you do …

Remove the tops from the strawberries and place in a bowl with the icing sugar

LIGHTEN IT UP
Feel free to reduce the sugar used in this step

2. Use a fork to lightly crush the strawberries

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3. Place some granola in the bottom of each glass, followed by some strawberry yoghurt. Top with the crushed fresh strawberries and serve

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We also sprinkled a little icing sugar on top of our finished sundaes for decoration purposes.

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Little man seriously took over (I swear he would make a great head chef… His bossy and likes to take charge). Although this recipe was really simple, he really enjoyed putting the sundaes together.

As for the taste, we all loved them! Just check out the toddler getting stuck in!

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The kids have now suggested having the yogurt sundaes more often. Alice even had one for breakfast this morning.

There are loads of recipes on the campaign page. But be warned… You may suddenly find that you feel the need to munch following browsing.

So why not select a recipe and get cooking with the kids!

You can access the Cooking With Kids Campaign page on the Great British Chefs Website by Clicking Here

Disclaimer: Please Note This is not a sponsored post! I Wasn’t paid to write this and didn’t receive anything for doing so. We joined in because we wanted to. Its a campaign we believe in and a great way to teach children skills in preparation for independence (especially those on the autism spectrum like little man).

A Case Of Miscommunication

15 Apr

So, my mum says to little man while his having a “moment”

“You can’t just go around hitting anyone you fancy”

He had just lost his temper and hit out at his sister!

Little man replies, and with a temper I must add!

“Nanny your disgusting are you suggesting I fancy my own sister?”

It was one of those moments and mum couldn’t help but to laugh. However laughing was not on little man’s agenda!

“Don’t laugh at me nan” he screamed as he kicked the wall and throw himself on the floor.

You see, when talking to little man we have always tried to remember to put things in a way that is easy for him to grip a hold off and fully understand. Using metaphors and words that have two meanings can get confusing for little man, but over time he has learnt certain metaphors and their meanings (though this is mainly as a result of a past miscommunication).

Even though I am careful in how I speak to little man I’m also aware that I can’t be there all of the time and in actual fact, to some degree he needs these miscommunications In order to learn from them and go on to be successful in whatever it is he chooses to do in life.

Every time little man hears a certain metaphor we try our best to explain its true meaning to him! This doesn’t necessarily mean he understands it, or should I say… “Agrees” with it! His response will normally be something along the lines off… ‘Whats the point in that mum?’ or “Thats just stupid because why would anyone even have Skeletons in their closet?” Though, regardless of what he thinks about it, he will usually store the term along with its correct meaning for his own future reference.

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My point is, and its an important one! That our children on the autism spectrum will find themselves in situations like this. If we forever try to wrap them up in cotton wool, insisting that those who speak to them do so in a totally unambiguous manner all of the time, then what happens ten, twenty years down the line when your child is at work in the office, and having been a little moody to a fellow colleague that colleague, jokingly tells them ‘Ok, Ok … Don’t get your knickers in a twist’ Things could be taken completely out of context. I can Imagine Little man’s reaction to such a term ,having no idea that it was in fact a turn of phase, he’d be inclined to tell him that he doesn’t wear knickers and if anything doesn’t much like wearing underpants either.

I’m not saying that when our children go of to school in the morning, the teachers looking after them, should greet them with some low life wise crack comment. Teachers should do their best not to confuse the child with their language but like us, their parents, teachers should be their to explain such metaphors when and if our children encounter them. Given we all use these silly little sayings so often, one or two are bound to slip out now and then from someone, somewhere along the line. But then isn’t better they hear them now rather when they are 25?

Don’t forget this month is Autism Awareness month and despite the need to raise awareness everyday, why not start with today and share something with your family and friends directing them to this post.

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