Waste of Time at CAHMS

After my visit to CAMHS with my son, I was invited back with my husband for some sessions on how to manage my son's anger and anxiety. I was hoping that she would teach us some useful techniques on managing meltdowns.

We were led into a room and for a whole hour we chatted. My husband actually fell asleep twice.

The psychologist did not actually give us any advice at all and most of the subjects we covered were the same ones we covered on the previous visit.

She did suggest we send our son to martial arts classes, but I didn't fancy the idea. It just means he would do even more damage when he lashes out! I don't want him leaping round the living room doing Kung Fu on all of us!

I felt like I wasted a whole hour of my life that I can't get back. She asked me if I needed another session and I politely declined.

I'm done with CAMHS and hope I won't be requiring their services again.

Home Schooling My Autistic Child

After the debacle  I mentioned in my last post, I had a fretful night with very little sleep. The next morning I concluded that I could not send my son to school as I would not feel he was safe.

After a lot of thought, I wrote a letter to the headteacher, withdrawing my son from the school. I briefly explained why and how I felt that the school had let us down.

I explained to my son that we were now going to have school at home. He seemed quite happy about this, although he was a bit sad that he would not see his friends anymore. We sat down and wrote out a list of the subjects we wanted to study and we made a timetable. I found that the best way to teach him was in 30 minute lessons, with short breaks in between.

I found a huge amount of resources on the internet, but will cover this in a future post. We had lots of fun with our home school, cutting, colouring and playing games.

Then, in the afternoon, I had a call from the headteacher, requesting a meeting the next day.

I managed to get in touch with the safeguarding department, who advised me to make sure that the headteacher had a plan in place for my son, should he return. She also advised me that if things did not go the way I wanted, that I should report the matter to Ofsted, who take a very dim view of children escaping from schools....

The next day, we had another full day of home school, which I must admit, I really enjoyed, even though my son was now missing school quite a lot. Autistic kids need their routine and change is hard.

I met up with the headteacher that afternoon and we forged a plan together. We will be having a meeting in January with the head, SENCO, class teacher and head of year to formulate a written plan for my son's safety and well being for the rest of his school life. I was happy with this.

I got back and told my son he was going to be able to return to school.

"Good...." He said.
"...I do like being at home mom, but I miss school".

He needs school.

So today, he went back, just in time for the end of term party. He got lots of votes in the dance contest, which pleased him no end!

As for me, sending him back was bittersweet, but I must admit that I am quite relieved that it all worked out. I have a new found respect for those who choose to home educate. It is certainly not the easy option.

Time to Quit School?

I thought things were going well at school. Until yesterday.

I arrived to fetch the kids, only to find my son outside the school, standing in the playground by himself. Obviously, this was a completely dangerous situation, because the school gates were open and there was nothing to stop him walking through them and down the street, or walking off with a complete stranger.

The school building is made of two separate buildings and you have to cross the playground to get to the other one. My son had crossed the playground, but had been unable to gain entry into the other one, as there were no staff around. The result was that he was stranded outside in the rain.

I spoke to the teacher and got the usual "we're very sorry" spiel, but somehow it did not feel good enough. After all, this is the fourth time that this has happened now. It happened three times last year. The staff don't seem all that concerned that their pupils could possible wander off or get abducted.I spoke to the SENCO and got a similar response. I told her that apologies seemed a bit empty at this stage and that I didn't think my son was safe at her school.

This morning I sent a withdrawal letter, requesting that my son be removed from the register. I will have to home-school him unless things change. My son was quite happy at the idea of home-school, and we have spent the day building skeletons, reading stories and learning about the orchestra.

This afternoon, the head teacher phoned, sounding very apologetic. She wants to meet with me tomorrow. There may still be a chance to resolve this, but I want more than an apology. I need to see a real commitment to change.

We will see.

Another Bad Day at School

My son came out of school really upset again yesterday. He was crying.

A boy in his class left at the end of last term to go to a new school and my son found it really hard to cope with the change. My son considered the boy to be his friend, as he was often chosen to be his partner during schoolwork. He keeps asking me why the boy left and he gets really sad about it.

Anyway, apparently, this boy sent a letter to the class and the teacher read it out. The opened up the wounds again for my son, who was inconsolable.

He also was upset because the resident bully had been picking on him yet again. When I went into the school, I got a good look at this boy who had been bullying my son and he was not your typical bully. He was obviously a very bright boy, very articulate and not particularly big and strong. I think he was in the top group for literacy and maths, the total opposite of my son. He looked like butter wouldn't melt.

So at lunchtime, when my son usually wanders around alone, bully boy decided to round up a few other kids to laugh at my son and run away. This got my son really agitated and angry, which further fuelled the boys.

I spoke to the teacher about it and she talked to the bully again today. Now it is the third time he has been reported, they are going to take the matter seriously.

We will wait and see.

Bad Morning....

Yesterday was one of those days.....

5:30 a.m. Husband gets up for work and goes downstairs to get ready. One of the light bulbs in the living room blows out, tripping the circuit and leaving him in the dark. He fumbles and bangs around trying to find a torch to reset the circuit box (waking me up). At the same time, our "posessed" doorbell starts ringing out "It's a Small World". It never works any other time. I presume it has damp inside. I pull the duvet over my head and eventually drop off.

8:00 a.m. Cautiously open one eye and wonder why it is light. The last few mornings it has been dark. Glance over at my alarm clock. It says 7:20. It is set to go off at 7:30. Glance over to my hubby's alarm clock, which says 8:00. Realize that my clock has stopped and that I have overslept by half an hour.

I shout the kids to get up and run downstairs frantically trying to feed everyone. Feed kids and self and manage to stuff their lunchboxes with something, leaving a terrible mess in the kitchen.I'm aware that my hubby is bringing the mother in law back, but have no time to tidy up. Whack on the automatic air freshener in the hope that the nice smell will distract her from the mess.

8:20-8:35 Quickly get dressed and rush out of the house with kids.

8:45. Amazingly, we get to school on time. I have agreed to help my son with his work, but am keen to rush home and tidy up for arrival of MIL.

9:45. Having gone overtime, I leg it back home to tidy up. ETA of MIL 11:00 a.m. I still have time.

10:05 Arrive home. The place is a tip. There are open packets everywhere, washing up in the sink and lots of sticky surfaces. Frantically start washing up.

10:10 Aaaaaaarrggggh! Notice that the sink isn't draining. This may be connected to pouring the fat from the grill down it yesterday. The sink is now full of grey, smelly water with cheerios floating on top.

10:15-10:30 Frantically bail smelly water out of sink with a used can. Smelly water splashes all over floor and worktops.

10:30-10:40. Run to corner shop to get some plughole unblocker stuff. Run back home and pour it down plug.

10:40 Empty washing from the machine and start draping it over radiators. Why is it so dry? Sniff it and realize I never actually washed it. Throw it back in machine quickly.

10:45-10:55 Quickly wipe over all the sticky surfaces, fluff cushions and tidy up.

11:00 Good. they are not here yet. Dash upstairs.

11:05 Aaaaargh! The bathroom floor is covered in smelly towels and the sink is full of dried-on toothpaste. I hear the car pull up on the front.Grab towels and lob them in laundry. Grab some loo roll and wipe sink as they enter the front door.

11:06 Dash downstairs, jump on settee and put on a calm, serene expression. "Hello.." I say calmly..."Anyone want a cup of tea?"

CAMHS

Yesterday, we went to CAMHS, the children's and adolescent mental health services. We had been referred by our paediatrician because of my son's meltdowns and anger issues.

When we were in the waiting room, I felt like I was in the wrong place, because my son was the only child in there. Most of the people waiting were teenagers.

I felt a bit lost at the appointment and I think both me and the practitioner wondered what we were doing there. From our discussion it became clear to me that my son wasn't really in the category of behaviour that they are used to dealing with and although he has meltdowns and tantrums, they are not constant and his general behaviour is good.

The lady offered me two sessions: one dealing with anger and another dealing with anxiety issues. I do not need to take my son with me. I think once I have done the sessions they will probably discharge him.

Although it wasn't for me, it is good to know that these organizations are available to help young people with mental health problems.

Autism and Money

I went to help out at school again yesterday. This time we were learning about money.

"OK..." I said. "How many ways are there to make 10p?"

"Well we could have 5p add 5p" replied my son, bright as a button.

I was pleased with this answer and presumed that he was going to "get it" straight away.

"Any other ways?" I asked.

"Yes. 9p add 1p"

"No." I sighed. "9p isn't a coin is it?"

"Er no. I mean 8p add 2p" he replied.

After about half an hour of that conversation, we then looked at the coins. He had real problems understanding what the values on the coin meant. For example, he thought that ten of any coin made 10p, because he didn't take any notice of the coin value.

It was a long hour and I am not sure we actually got anywhere.......

Counting Down

One strategy that really helps us to avoid meltdowns in out autistic son is to count him down in minutes.

For example, if he is playing on a game and I were to just come along and say "get off that game now", he would probably go crazy.

But if I were to say "Right, you are coming off that game in 15 minutes", we would be fine. I would then need to remind him every five minutes to accustom his mind to the idea that he is coming off the game. Therefore I will say "10 minutes", then "5 minutes left", before switching the game off. By this time, he is absolutely calm and stops the game, no problem.

I have told his brother and sister to do the same when they are dealing with him, to avoid fights and tantrums. Yesterday, my son was playing on his big brother's iPad, when his big brother came along and snatched it off him. He went bonkers. I then told my older son to give him the iPad back, but to say "I want it back in 5 minutes", counting down every minute. When he did that, the process went a lot smoother and my older son got his iPad back without a fight.

In February, we are going to CAHMS, the children and adolescent mental health services. We are hoping that they will be able to give us more strategies like this that will make family life smoother and less stressful.

Helping at School

I started volunteering at the school to help my son with his schoolwork.

This morning we did a bit of maths and it was great fun. I was only there for half an hour but it went so fast. he is a joy to work with. I can't wait to go in again. We worked on some column addition and used plastic blocks to verify our answers.

I was also pleased that my son won "Star of the Week" for being the most sensible child in class! What a change from last week!

Finally...Some Progress With the School!

In my last post I was bemoaning the state of things at school. Happily, a LOT changed for us today.

This morning I was lucky enough to run into the SENCO. I took the opportunity to talk to her about my concerns. My chief concern was about my son wandering around the playground by himself and getting bullied. Secondly, I wanted to address the fact that the classroom setup wasn't working for him and that he needed to work in a smaller group or 1:1 to make progress.

The SENCO was great and by the time I came to fetch my son from school, she had put the wheels in motion for some changes.

Firstly, his class teacher showed me a checklist that is pinned to the board. My son has to tick each item off when he leaves school on a Friday. This is really going to help him get organized.

Secondly, he is going to be working in a smaller group in most lessons to ensure that he hears when is being said and the teacher can look at him to make sure he is listening.

Thirdly, the SENCO is arranging for him to have a "circle of friends" at playtime.

The class bully is now being closely monitored on a "three strikes and your'e out" basis. He already has 2 strikes against him.

The teacher apologised for singling out my son the other day when she was angry with him. I told her that it is sometimes difficult to discipline an autistic child because of the way they take things, but ensured her that he must still be disciplined when he does wrong. She made me laugh when she said that he takes everything literally and that when she said to the class "Right...I'm going to pick on a child....", my son shouted "No!!!! Picking on children is bad!"

She has arranged for me to come in twice a week to help him with his literacy and maths.

I am really happy about this and especially as it was all done in a friendly cooperative way with no fighting!

I feel really positive about the rest of this school year for him. What a difference a day makes!

I am an Advocate for my Child

Having a child with special needs is like being dropped off on a remote island with no equipment and expected to "get on with it". You are either going to flounder hopelessly, or quickly acquire the necessary survival skills. Or, perhaps a bit of both!

Its not as if someone hands you a big book with everything you need to know. You pick up information as you go along. Strange code words like SEN, IEP and big words like "pragmatic semantic", start to make sense over time, but sound like a different language when you first hear them.

I wish I knew everything I know now back when my son was small. I would have almost certainly pushed harder for a statement of special needs back when he was in Reception, still in nappies and scribbling indecipherable babble, whilst all of his classmates wrote their names neatly in their books. But I didn't. This was because, at the time, I had never heard of a statement of special needs. And now I am in some sort of educational limbo, or as it is more commonly known, School Action Plus.

School Action Plus is when the school know your kid has special needs, but do not get any extra funding to support them. Staff are stretched, and unless you make a big fuss, they will presume everything is alright.

Case in hand. Birds in a nest......

You know on those nature documentaries where the baby birds are in the nest and the mom comes with the food? They all start chirping and flapping. The big fat noisy one gets fed and the little runty one usually gets nothing, withers away and dies. That's life. You have to be big, fat, noisy and flappy to get anywhere with school staff.

I was talking to one of the other moms at the school who also has a child with aspergers. I asked her how she felt the school coped with her daughters disability.

"Do you want the truth?" she whispered.

"Terrible."

She went on to explain how she had to fight to get everything for her daughter. If she went quiet, the school would presume everything was fine and do nothing.

Fight. That is a word I hear all of the time.

Every parent I know with a disabled child has had to fight for their child's education. Fight with staff, fight with the Local Education authority. Fight with school governors. That's a lot of fighting. And the fighting doesn't stop there.

I found an interesting document online, which was about making every school a good school for people with autism.

It made a statement that really got me thinking. Basically, it said that lack of progress is cumulative over many years. The current year teacher may not notice, but the parents will.

This is a scary thought. My son's brain is still making connections. If the education system is failing him now, then he will fall further and further behind.

I was speaking to a friend who has an autistic son who has recently taken his GCSE's. He got mostly A grades. She said that there was no way he would have acheived this is they had not fought for a statement when he was young. It was only because of the extra support that he had received in class that he did so well.

That scares me. My son has no support.

I spoke to his teacher this morning about me going in and helping him in class a few days a week. She was really enthusiastic about the idea.

I know it will help, but I can't help feeling like I am doing the school's job for them. If I am in class helping my son, there is less incentive for them to do anything about the situation.

More Trouble at School....

I am feeling increasingly guilty about sending my son to school. Every day he comes home and tells me of yet another incident of bullying. I feel like I send him into the lion's den every morning.

Previously on this blog, I mentioned a boy in his class who has made it a personal goal to make my son's life a misery. His abuse is usually verbal, but lately, it has also been physical. Only a few weeks ago, I had to tell the teacher about an incident where this child had unravelled a paperclip and was trying to stab my son with the sharp end. The teacher spoke to the boy and I hoped that the bullying would stop.

Yesterday, My son said that the bullying had started again. The boy had been taunting my son with a bag of Monster Munch (snacks with a very strong flavour and scent). Kids with autism are hypersensitive to smells, and the smell of Monster Munch makes my son feel sick. When the boy realized this, he kept putting the bag near his face and then eventually threw the bag of snacks in my son's face. Of course, my son did not think to mention any of this to a staff member.

In the playground, my son plays by himself. He is happy in his own world. During break, a kid kicked a football in my son's face. He said it was an accident, but the child involved was a child who had been previously bullying him.

The "bullying" does not stop with the children. In class the teacher explained to the children instructions on how to write a story and then sent them to their desks to write it. Unfortunately, in a large group, my son "tunes out" voices, and needs one on one instruction, to take in information properly. When he got to his desk, he wrote the story wrong and the teacher was furious. She then announced to the whole class that if she was giving out prizes for good behaviour, my son would be the last person to get one. This reduced him to tears. Unfortunately, I do not know whether the teacher has had much training about autism or how it affects a child's ability to process instruction.

He was pretty miserable about going in today. I had to fight back the tears when I sent him in. I felt like I was sending him to his doom. I am in tears typing this.

A Trip to Waterworld: As Seen By the Kids......

I was recently invited to take part in a competition to find Britain's best day out. The competition is being run by Moneysupermarket.com and the Tots 100 parent blogging website and involves hundreds of tickets being sent out to parent bloggers across the country. The bloggers will then review the attraction, with the best blogpost winning a prize!

I was delighted to receive an email telling me that my family had been selected to review Waterworld, a tropical aqua park in Stoke on Trent, Staffordshire. This all-weather attraction is a veritable paradise for families, with attractions for all ages and abilities. Waterworld has 400,000 visitors every year and offers a great "tropical beach" escape from our dull British weather. At Waterworld, it is summer all year round.

The pool area resembles an south sea island, complete with palm trees, overhanging plants and a shallow beach area. Visitors can do as much or as little as they please. Parents can relax and enjoy the warmth whilst relaxing on a beachside chair. Toddlers can splash around in their own dedicated pirate-themed lagoon. Thrill seekers can check out the many flumes and rides, including the rapids and space bowl. The main pool area is an ideal place for young kids to practise their swimming skills under the safe supervision of the many lifeguards on duty.

I liked the fact that the slides and flumes catered for different abilities, including those who could not swim. For example, the huge rainbow slide near the entrance of the pool was a real hit with young and old alike, but had shallow water at the end, making it completely safe. The small flumes in the pirate-themed area also had shallow water at the bottom. My little boy absolutely loved them and went on over and over again.

The bigger kids headed straight for the thrill rides. One ride required riders to sit in an inflatable tube, whilst coasting high above the pool area. The flume rides varied in intensity, and my kids loved the one that was completely dark inside with pulsating flashing lights. The space bowl was another big-thrill ride, which sent swimmers swirling around and around before plunging them into a tank of deep water at the end.

Now I must confess, my choice of attraction has put me at a bit of a disadvantage to the other bloggers in the competition, as visitors are not allowed to take photographs or video during their visit. Undeterred, I teamed up with the kids and their toys to recreate the Waterworld experience in the most creative way possible. Here is the result:

According to the kids........

....the rainbow slide was fun for all ages......

....the flumes were exciting......

......the monkey bars over the water were really tricky....

.....the Space Bowl makes you dizzy.....

.....we rode the tube slides again and again.....

........and again.....

.....it was great coasting along on the inflatable rings....

......and the wave machine made us feel like we were at the beach!

In fact, the kids loved it so much, they made a pop video too.

Finally, I thought I would interview the kids to get their impressions of the visit to Waterworld.

So kids. What did you do at Waterworld?

Son Aged 12: I went on all the waterslides and ran across the lilypads. I had a swim in the pool and went on the rapids.

Daughter Aged 9: I went on 8 slides and I swam underwater like a mermaid.

Son Aged 7: I went underwater. I went on the bumpy slide, the orange one and the green one. It was fun!

What was your favourite activity?

Son Aged 12: Going on the tube slide.

Daughter Aged 9: Going on the slides with my brother.

Son aged 7: Going on the orange slide.

How would you describe Waterworld in one word?

Son aged 12: Fantastic!

Daughter Aged 9: Fun!

Son Aged 7: Brilliant!

Would you like to go again?

All: YES!!!!!!

In conclusion, we had a great day out at Waterworld and we are grateful to Moneysupermarket and Tots 100 for supplying us with free tickets. We plan to visit again in the near future. Admission to Waterworld costs £37.50 for a family of four and £47.50 for a family of five. The Moneysupermarket.com voucher site offers a range of money-off vouchers so that families can visit Waterworld and other attractions in the UK at a discounted price.

IEP: Individual Education Program

When you have a child with special needs, you suddenly come across a whole world of new words, terms and acronyms to get your head around.

Yesterday I met with the school SENCO, to discuss my son's IEP.

Or...In plain English.....

I met with the member of staff at school who is responsible for children with special needs. We get together every few months to create an Individual Education plan for my son, which is basically a list of targets that the school would like him to work on.

We have to decide together on three targets. His last targets were:

1. To participate more in partner time on the carpet: He has improved in this but said that a lot of the time, the other kids don't want to talk to him, so he still needs a little help here.

2. To improve in column addition: He is almost there, but has trouble remembering to carry numbers.

3. To improve handwriting, especially finger spaces: BIG improvement on this one!

After we discussed his improvements, we then had to decide on three new targets. In the end, we decided on:

1. To learn times tables 2s, 5s and 10s off by heart.

2. To try and keep letters of a uniform size when writing.

3. To remember to collect all appropriate equipment after school on Friday. He has to remember his coat, hat, bag, PE kit and homework, plus any letters home. The teacher is going to give him a checklist for this.

She then asked my son how he felt about school. he said he was happy at school and liked it. I said that I felt his maths had really improved. he has been on a new program called "rapid maths", which seems to be helping him a lot.

We then all signed the IEP and will have the next review in February.

The School Bully

Yes. I'm writing yet ANOTHER post about bullying. Unfortunately, kids with autism have poor social skills and are often the target of bullies. This problem is unlikely to go away any time soon but hopefully I can arm my son with some of the skills he needs to survive school.

Last year my son suffered terribly at the hands of bullies, but a certain boy in particular made him a target. The teacher at the time was very good at dealing with the problem and things went quiet for a while.

My son has been mentioning this boy a lot lately, but things came to a head yesterday. He said that the boy had twisted a paperclip open and had been trying to stab him with it. He also said that the boy had picked his nose and tried to wipe it on my son's top. When my son goes into the corridor to get his coat, the bully blocks his way.

I have spoken to the teacher today, who was really good about it. My son often fails to mention incidents like this to the teacher, so I have been reinforcing the idea by reminding him to tell her. The teacher said she had actually found the paperclip and had taken it off the boy, although she didn't realise that he had been using it to try and stab people.

I will be logging all bullying incidents although of course, I would hope that there would not be any more.

Coping in Class

I went to parents evening last night.

The teacher was pretty happy with my sons progress, but said that he can often look lost and bewildered in class. If she gives the class several instructions, like "Put your books away, grab your whiteboards and come and sit on the carpet", he would get totally confused, because it is too much information for him.

I did mention that he need instructions reinforcing and that they are best given one to one rather than to a group.

He is holding his own academically. He has a 2c in maths and a 2b in reading. This puts him a bit behind the rest of the class now he is in year 3, but not so far behind that he has big issues. A teacher is doing maths with him in a smaller group to help him catch up. Because of this, he will not be eligible for a statement of SEN, as he is not far enough behind the rest of the class.

The teacher is also going to make him a laminated checklist so he can remember what to bring with him when he finishes school on a Friday.

Seeing the Doctor

We went to see the paediatrician today.

She was happy with my son's progress. I mentioned his anger issues so she has referred him to a service called CAMHS, which is the children and adolescent mental health services. Hopefully they will be able to help us with some anger management techniques.

She also referred him for a hearing test as he is not always picking up everything I say.

Getting Dressed at School Part 3

My son is now getting help with dressing at school!

Yesterday he managed to button up his shirt by himself except for the top button. I was so proud!

My friend said that some stores, like M &S do school tops with a velcro top button, so I will be looking out for these on my next shop. I know a lot of kids struggle with the top shirt button, so I think it is a great idea, especially for autistic kids.

Roller Skates!

When my son was very young, he was quite clumsy. He used to trip over his own feet a lot and it is not uncommon for kids on the autistic spectrum to have problems with gross motor skills.

Lately, however, he has come on leaps and bounds. A few months ago he mastered riding his bike without stabilisers and most days he is out whizzing around on his scooter.

His latest thing is roller skates. I bought him a pair and he loves them. He wore them all day after school, yesterday and we had trouble getting him to come in and take them off.

When you have a child with autism, every milestone conquered is a big celebration! He now has way more co-ordination than me. I am terrible at skating and can't ride a bike.

Getting Dressed at School Part 2

Today, the teacher ran to meet me looking quite agitated. She had heard from another member of staff about what happened yesterday and assured me it would not happen again. I produced a letter I had written detailing the events that took place and asked her to pass it on to the SENCO and headteacher.

At home time I ran into the SENCO and asked her if she had seen the letter. She had not, and was not aware of what had happened yesterday, so I filled her in. I am a little worried that my letter may have been "lost", but was savvy enough to keep a copy on my computer. On my way out of the gate, I bumped into another mom of an autistic child who informed me that she was upset too because today her child had managed to escape from the classroom unnoticed.

My feelings towards the school are none too positive at the moment...

Getting Dressed at School

A while ago, I expressed my concern about the new school uniform rules, in particular, the shirt that my son would have to wear. He has poor fine motor skills and is unable to fasten and unfasten buttons.

I had told his new teacher that he would need help getting changed.

They had P.E. for the first time today. Unfortunately, they had a supply teacher who did not know my son had problems getting dressed. She left him alone in the class to change and he got really upset. At home time, I came to collect him and he came out with his shirt unbuttoned and his jumper twisted around one arm. His tie and P.E. bag were missing.

I managed to get him dressed but was appalled that the school had left him in this state.

I have written a detailed letter about this to the school explaining that I do not want this to happen again.

Paralympic Games

We were watching the Paralympic games on TV because my husband and oldest son were in the crowd watching the 100m finals.

I had explained to my little boy that his dad and brother were there when we saw the stadium on TV.

One segment of the show featured an interview with Oscar Pistorious. I explained that he was a really fast runner.

"But is dad fast too?" he replied.

At that point I realised that he thought that his dad and brother were actually competing in the games, rather than being spectators.

I don't think he would have batted an eyelid if his dad and brother appeared on screen racing against Oscar and the other runners!

Visiting Alton Towers

Yesterday we used our Merlin's magic wand tickets for Alton Towers.

The tickets got us into the park for free and I also managed to get a special access wristband from guest services that allowed my son to access the rides via the exit.

I did notice that quite a few people had the bands on, which meant that sometimes the disabled queue was quite long!

Some rides did not allow use of the band, namely the Skyride and the kiddie driving school.

When we were walking to the park from the car park, my son was having a strop and some people were staring at him

"Mom!!!! Those STUPID, FAT, UGLY, IDIOT people are staring at me and laughing!" he bellowed, pointing at the family behind us.


And a fun day was had by all......

Blackpool E Wristband

We went to Blackpool yesterday. Following our success at Chessington with the special wristbands, I decided to try the same at Blackpool. Reading the terms and conditions of their website, I saw that they will only issue a special wristband if you take in proof of the child's condition from an official source, such as a doctor. The letter also has to state why the child would have trouble queueing. DLA letters are not classed as proof.

Luckily, I had a detailed assessment letter from an occupational therapist who had been dealing with my son, which explained that he has a short attention span and can get agitated and aggressive. I showed this at the ticket office and they issued him with an "E" wristband, which is an exit pass, meaning that he can access all the rides from the ride exit and get on straight away.

The band is limited in that they will only allow one carer on the ride with the child. As there are 5 of us in the family, we had to take it in turns to ride with him, so we all got a fair chance at the rides. It worked out well, though, and he got to ride pretty much everything!

I think it is a shame that information about these bands are so "hush-hush". Blackpool pleasure beach certainly do not advertise the fact that these bands are available and this means that many families with disabled kids will not even know that this provision exists.

Well they do now.....!

I Spy....

We were returning from town on the bus and my son could hear a girl playing I spy with her mom behind us.

"Can we play I spy?" He said.

"OK".

"I spy with my little eye, something beginning with R"

I looked round the bus but couldn't see anything beginning with R.

"I can't see anything beginning with R." I said.

"Nor me." he replied.

"Do you know how this game works?" I said.

"No. I was just copying the girl behind us. She said something beginning with R, so I said it too."

I explained the game and we started again. This time, he was a bit better, but he did have a habit of pointing to the thing I was supposed to be guessing.

"I spy with my little eye, something beginning with O", he shouted, pointing to a lady near the front of the bus.

I looked at the woman. She didn't seem to be carrying anything beginning with O.

"I don't know" I said.

"OLD LADY!!!!" he bellowed at the top of his voice, as everyone on the bus turned round.

We won't be playing I spy again. I think it is potentially too dangerous, and I don't want to get beaten up by "Y is for Yobbo".

Explaining Autism to a Child

Telling a child that they have Autism is always going to be hard. There is no "set way", or set age to do it. in fact, some parents choose not to tell their children anything out of fear that the child will simply not comprehend the diagnosis.

When I told my son he had Autism, he seemed confused. I explained it by saying that people with Autism are very good at some things, but find other things hard. they may also get angry easily.

He latched onto the "very good" part and didn't seem to process the rest!

Now, when he does something well, he says it is because he has Autism and he is very clever.

It's a start, I suppose.

Another issue I will have to tackle with him at some point concerns the Action for Children Group. He does not really understand why he goes there, but I know he is going to ask questions at some point. Only yesterday, I realised that he thought his brother and sister were in the "siblings group" because they were older than him and that he thought when he got older, he could join them in the siblings group too. Some of the children in his own group exhibit extreme behaviour and I wonder if he will ask me why he is in a group with them, because he doesn't see himself as different.

Am I even doing the right thing "labelling him" like this and sending him on trips with kids with challenging behaviour? His needs seem quite mild in comparison with some of the other kids that go to the group. One of the moms I spoke to who had a daughter with Autism refused to send her daughter to a special school because she was worried that the girl would see the other kids behaviour and regress herself.

There are no easy decisions here. I suppose the key is good communication and monitoring how he reacts to the group. At the moment he loves it. he went to the zoo with them yesterday and had a great time, so maybe I am worrying over nothing.

Dreams and Reality

As I have mentioned in previous blogposts, my son has a lot of difficulty distinguishing reality from fantasy.

When we went on a trip a few weeks ago, he asked me if the coach was going to fly up in the sky to get to the theme park. I honestly think he wouldn't have batted an eyelid if the coach had suddenly sprouted a pair of huge wings and launched into the sky!

Yesterday, we were talking about dreams and I told him about a scary dream I had as a child.

"Grandad has got some videos of you when you were little...." he said.

".....Has he got a video of that dream you had? Can I watch it?"

He couldn't understand that a dream is something in your head and that it can't be captured on film.

Support for Siblings

My oldest two children are getting a free trip to Drayton Manor Park today, courtesy of Action for Children. This gives them a break from their little brother and a chance for some one-on-one mom and dad time for him.

Autism affects the whole family, so it is great that charities and organisations recognise this and offer support and help to brothers and sisters of disabled children.

They also got to attend the recent Mad Hatters Tea Party at Birmingham Botanical Gardens this year. This is another great charity that provides a huge party every year for disabled and disadvantaged kids. My son had been before, but this time the school SEN thought it would be nice for his brother and sister to attend instead. They had a great day and a well-deserved break.

Baby Videos

I was watching some videos of my son as a baby yesterday.

They shocked me.

The baby on screen was facing the camera, smiling, responding well to commands and interacting with others. You would never have thought that the child was autistic.

Indeed, my son was a bright, bubbly, responsive baby and at his 2 year health check, he scored highly on intelligence. I remember the health visitor being very impressed that he could count to 20.

Sometime between the ages of 2 and 3 years old, things changed, almost imperceptibly.

I saw a programme on TV a while ago where a mother described her autistic son as being a typical baby, but then one day, he seemed to have changed overnight, like a light went off in his brain.

Autism is such a mystery, but when it has sudden onset, it is even more puzzling.

Trip to Chessington

I had an amazing day out yesterday. We went on a trip to Chessington World of Adventure, courtesy of Action for Children. Merlin Entertainment, who own several theme parks, including Chessington and Alton Towers, subsidised the trip so that we were able to go for a very reasonable reduced price per family.

For a coach full of kids with learning disabilities, the kids were surprisingly well behaved during the 3 1/2 hour journey.

The best thing about the trip was that we were all issued with a ride access pass, which meant that we didn't have to queue for the rides. This is a huge bonus when you have an autistic child, as these kids don't really understand the concept of queueing! My son was given a wristband which we had to show at the ride exit and the staff let us on the ride. By the way, hats off the to park staff, who were all lovely and very helpful.

I also believe that the other big theme parks run a similar scheme. Alton towers and Drayton manor also have a ride access policy. Disabled visitors need to bring proof of disability. DLA forms do not count, it has to be a doctor's letter or diagnosis letter. Show the letter at guest services and they should issue you with a wristband.

It made all the difference to our trip, which has been the highlight of our school holiday so far!

Personal Space

We have the decorators in today to do the kids' rooms.

My son chose what he wanted, now he finally has a room of his own.

He wants it sea blue/green with big stickers of fish on the walls.

Taking Things Literally....Again!

Me: "Dad bit everyone's head off last night."

My Son: "Really? Did we have to glue them back on again?"

Transition and Leaving School

My son finished year 2 of school this week. He took it pretty well. The teacher made it easier for him by helping him create a transition book, with pictures of his new teacher and classroom to help him get used to the idea of change.

His big brother finished primary school and this was harder for my son to cope with, as they go to the same school.  He got so upset and he couldn't deal with the fact that his big brother would be going to a different school in September. He loves his brother and that is going to be hard for him when he goes back without him.

Life goes on, and whilst most of us find it relatively easy to adapt to change, it can be really tough on autistic kids.

We have been at our new house over a month and he still thinks that at some point we are going to return to the old one....

Everything in its Place

Everything has to be perfect in our house, or my son cannot rest.

If I leave a cupboard door open, he will close it.

If a toy is on the floor face down, he will turn it the right way up.

If he is eating his lunch and has something with a wrapper, such as a chocolate bar or bag of crisps, he cannot just place the empty bag on the plate and carry on eating the rest of his food. He has to take the packaging into the kitchen and throw it in the bin first.

Unfortunately, I am the exact opposite. I'm just a little bit messy and disorganised and yes, I do leave things untidy sometimes.

It is a bit like having a little robot that follows you around and tidies up your mess.

We are a match made in heaven.

Bread and Butter

My son has a weird obsession when it comes to bread and butter.

If he has a bread roll, he does not like butter on it.

If it is a flat piece of bread, he likes butter on it.

If I fold the piece of bread over, it is now technically a sandwich and he does not like butter on it.

If he has toast, it has to be as pale as possible, otherwise he says it is "burned black", even if it is light brown. Toast has to have butter on it.

He also likes to eat butter raw, off a spoon, with no bread.

Fussy, huh?

Swimming

We have started going swimming on a Saturday. My son likes the freedom it gives him.

He gets a bit anxious in the water, but is starting to gain confidence. He was almost "there" today, he just needs a bit more practise!

Scooter

I bought my son a scooter today. They seem to be the latest craze and I thought it would help him with his coordination.

He is actually pretty good on these things. Better than me anyway, but then again, I have no coordination at all and can't even ride a bike or skate.

It is a bit embarrassing when an autistic kid has better coordination than his mom.

 I'll go crawl under a rock now.

Destruction!

I was just in the garden, cleaning out the rabbit, when my son came outside.

He had a piece of broken stair rail in his hand.

Apparently it snapped off when he pulled it.

So much for my new house. There won't be much left by the time he has finished with it.

You can't turn your back on a child with autism for one second.

Riding His Bike!

My son has had a bike for several year now, but a few days ago, he did something that I thought he would never manage.

He rode it without his stabilizers!

He has always has quite poor coordination, so this is a major step forward.

It taught me that I should never think that something is unattainable for my son, just because he has autism.

School Uniform.

They have just changed our school uniform.

When my son goes back in September, he will have to wear a proper shirt and tie instead of a polo top. Given the fact that he struggle to button the three buttons on his polo top and needs help geting dressed, I really wonder how he will cope in September.

People with autism can be very sensitive when it comes to clothes. When I tried the tie on him, he hated it because he felt like it was choking him. I don't know how he will manage wearing it all day.

Grunting Noises and Throat Clearing

Sometimes, kids with autism can develop tics, or mannerisms. With my son, it used to be tapping. He used to tap his arms and legs, sometimes stopping in the street to tap each part of his body before moving on. It was thankfully a short lived phase that only lasted a few months. I think it was his response to stress and I never made a big deal about it. I just let him do it and it went away on its own.

His new tic is throat clearing and grunting. A lot of the time I don't notice it, but this morning, I was lying in bed and my son crawled in next to me. As he was lying there, he kept clearing his throat and grunting. It actually kept me awake and in the end I had to get up, because I couldn't go back to sleep! During the day, I have kind of gotten used to it as a background noise. I hope it is a phase that passes soon!

He Slept in His Own Room!

Good news! My son now has his own bedroom!

We have finally moved out of our old, 3 bed house and into our new, 4 bed house.

I wondered how my son would cope, as autistic kids tend not to like change, but my son has taken it all in his stride and has really enjoyed the process of moving house.

In our old house, he would not sleep in the room on his own without his brother with him, which meant that my older son had to have an early bedtime every night, which he hated.

We put our son in his new room last night, fearing the worst, but he was so excited about his own room that he stayed there with no fuss and fell asleep within minutes!

I'm so happy! And so is his older brother, who can now stop up a bit longer!

Moving House and Autism

We are moving house on Wednesday. My son has been quite excited about it.

I couldn't understand why he wasn't more concerned.

Then, today, he was sitting on my lap and said:

"You know we are moving on Wednesday?"

"Yes".

"Well when can we come back to the old house? Can we have a week there and then come back?"

I think he has confused a house move with a holiday. This could cause problems! I am interested to see how he will come when we do move, as he will have his own bedroom for the first time in his life, and I know he will find it hard, because he hates being on his own.

Crazy Question of the Day

"Mom, why is a fire engine called a fire engine?"

"Eh?"

"...is it because it has got an engine in it? Is it because the engine is made of fire or something?"

"Um....well..."

"Why mom? Why is it called a fire engine?"

"Go and ask your dad."

Swimming Trip

I got a nice break today, which was just as well because we are packing up lots of boxes ready for our house move.

My little boy went on a trip with Action For Children to the local leisure centre for an hour and a half of swimming followed by a bouncy castle session and magician.

When my son went in the centre, he was very shy and quiet. It takes him a while before he relaxes and feels comfortable, but once he does, there is no stopping him!

They had assigned a lovely man to look after my son and another boy of a similar age. I liked the fact that there was a high ratio of staff to children.

My son absolutely loved the session and was very animated and chatty when we fetched him. The staff all commented on how talkative he had become.

I think sessions like this are wonderful for kids with poor social skills, as it encourages them to share new experiences and make friendships.

Lying and Dishonesty

One good thing about having a child with autism is that you know they will always tell you the truth.

My little boy has absolutely no concept of lying or dishonesty.

It does not occur to him that someone may not be telling the truth. He always takes everything that is said at face value.

Now this can be quite humorous If I am exaggerating something for comedic effect and he hears what I say and takes it literally.

However, I also find it sad in some ways. If I try to explain to him that someone is not telling the truth, he gets really upset and just can't cope with it. Unfortunately, in this world, there are far more dishonest individuals than honest ones and I worry that people may take advantage of his trusting nature.

As sad as it seems, I need to educate my boy that not everyone is as honest as he is.

National Autistic Society Brochure

My mom noticed a brochure about autism in her local health centre and passed it on to me. The brochure is published by the National Autistic Society and is available free in health centres in the UK.

I like the brochure, because it gives an easy to understand explanation of what autism is and how it affects people. It gives tips on how to communicate with someone who has autism, things like avoiding metaphors and non-literal phrases and giving the person time to respond.

I also like the way that the brochure uses real-life experiences of both people with autism and their carers to illustrate how autism affects individuals in different ways.

The website for the National Autistic Society is:

www.autism.org.uk

Information Cards

It can be really hard when you are out and about with your autistic child and they suddenly decide to have a meltdown in the middle of a busy shopping centre or in the street.

Passers by shake their heads disapprovingly or whisper to one another, making judgements without really understanding the situation. The problem is, that for an autistic child, everything is a big deal and a potential cause for a meltdown. My son had a tantrum in the street not so long ago because he dropped a lolly on the path and I wouldn't let him pick it up. I dread the school run home because I know that he will find something to scream about on the way home, because he expects everything to be a certain way and if there is the slightest change in our routine, there is likely to be a meltdown.

Luckily, although most people stare when this is happening, I have only ever had one person make a nasty comment to me. She was very rude and judgemental and her comments hurt me deeply. I view such people as ignorant, as they have no understanding of autism and how it affects children.

Because of situations like this, the National Autistic Society provide information cards that can fit neatly into a purse or wallet. These can be handed out to members of the public to prevent misunderstandings. they give a brief explanation of autism or asperger syndrome. They are available from NAS at the cost of £2 for a pack of 50 cards + £3.95 P&P.

Speech Therapy

My son has been going to speech therapy for quite a few years now.

He attends a group called "talking heads" which is a pragmatics group designed to help children with their social skills and understanding.

I always used to think that speech therapy was just for kids who had a speech impediment, like stuttering, but this is not true. Speech therapy can cover a wide variety of different issues.

The aim of the group that my son attends is to help the children understand emotions and learn to work together in a group. Many of the children who attend the group are autistic, so have a tendency to want to draw into their shell and work alone. the activities in the group are designed to enable the children to work as a team to achieve an objective.

I think my son has really benefited from the group. When he first started nursery, he would not speak to the other children at all and wandered around the classroom in his own bubble. When he walked into the waiting room today, he was greeted by the other kids and got involved straight away in joining in their game. They were all laughing and co-operating and it was really good to see some improvement in his social skills and the way he interacts with others.

Reacting to a Diagnosis of Autism

It took me a long time to get a diagnosis of autism for my son. He would go to various child development centres and have sessions under various departments, but nobody ever seemed to give me a straight answer about what was wrong with my child.

Of course, having no diagnosis made it awkward for me when people wanted to know what was wrong with my son. "He has learning difficulties" I would say sheepishly, not knowing how to proceed further.

Finally, when I saw a new paediatrician last year, she asked me if I had ever been given a diagnosis. I replied that I had not, but I was very interested in getting one, as I didn't know how to explain his disability to people.

She told me to think long and hard about whether I really wanted to know what was wrong with him. Apparently, some people don't cope well at all once they hear the dreaded words. I had no such hang ups. I knew there was a problem, so for me, having a name for it would enable me to research the condition and connect with others.

After a few diagnostic tests, she gave the diagnosis of Autism Spectrum, likely with Aspergers. I was so happy to finally have a name for the condition!

A few months ago, my cousin contacted me. She was very distressed because her son had been given a diagnosis of autism and she felt like her world had ended. She couldn't stop crying. I tried to encourage her the best as I could, but it just goes to illustrate how people can have vastly different reactions when their child receives a diagnosis of Autism.

Trouble With Maths

Although a lot of people presume that children with autism are gifted at maths, this is not true. Children with autism may have an aptitude for a particular subject at school, but they may struggle with other subjects in the curriculum.

My son has a flair for language and is a particularly good reader. however, he really struggles with his maths and cannot grasp even basic concepts.

He is nearly 7 years old and the class are starting to tackle more complex maths problems, such as division and fractions. The classroom assistant gives him a lot of attention, but there are simply not enough staff to give him the one to one attention he really needs. He also gets quite lost during lessons and tends to drift away into his own world when the teacher is talking.

The classroom assistant has kindly offered extra tuition after class, so I go to an extra class once a week to help him with his maths. it is really hard though, to have the patience, when he is struggling to understand the basics and he gets agitated too because he is frustrated.

I really want to persist though, because an understanding of maths is so important in life. We deal with money every day and I don't want anyone to take advantage of him when he is older.

I have a friend who has a grown up son with autism who does not understand about money. He took his son to the shop to buy a piece of electronic equipment and gave him a penny to take to the till to pay for it. The boy complied and took the penny to the till. His dad asked him to remember to ask for change, which he did. This sad experience shows that basic money handling skills can be a real problem for autistic kids and it is important for them to grasp the idea of money in order to be independent in later life.

Virtual Reality

In this modern age of technology, we accept what we see on the TV and in movies. We marvel at the amazing special effects that bring mythical creatures to life and create stunning backdrops. We understand that these effects are created by a combination of computer wizardry, animation and puppetry.

However, to a child with autism, the lines can be blurred. When my son watches Merlin on TV talking to a dragon, he presumes that the dragon must be real because the person on the screen is real. When I try to explain to him that it is special effects, he gets very confused.

The other day we were watching TV when a Sky advert came on. The advert was fairytale-style, with the wicked queen talking to the magic mirror. My son asked me if all mirrors had heads inside them, because it was scary. When I told him that is wasn't real, he said it must be, because the lady talking to the mirror was a real person.

Unfortunately, this can cause quite a few problems. The kids were watching Men in Black on TV and the scene came on where the man pulls his skin tightly upwards over his face. My son started crying and screaming to switch it off because he thought it was real. He wouldn't go to bed by himself because he was so scared about it.

How do you explain to an autistic child about the boundaries between reality and fantasy?

SNAPS Staffordshire

SNAPS is a very special adventure playground, located in Cannock, Staffordshire.

The playground has been running since 2003.

It is a specially designed play area, adapted to cater for children with different disabilities and special needs. The centre has an outdoor play area, which includes an aerial runway, cycle track with adapted bikes, sandpit with diggers and various pieces of playground equipment, suitable for children in wheelchairs. The slide is especially wide to incorporate a carer, sitting alongside the child.

The indoor area has a sensory room and a ball pit, as well as a craft area.

This wonderful facility makes play accessible to everyone, even the profoundly disabled and is the only facility of its kind in the West Midlands area.

Membership is £5 for the whole year and entitles the disabled child and their family members to unlimited access to SNAPS.

Merlin's Magic Wand

There are so many wonderful resources out there for parents with disabled children.

My friend, who has a child with ADHD, told me about a website called Merlin's Magic Wand, which provides tickets for days out for some of the major attractions in the UK and other countries.

Merlin Entertainment runs many big attractions including Alton Towers, Sealife centres, Legoland and Warwick Castle.

Parents and carers of disabled children can apply for tickets via the website and fill in a short online form explining why the child would benefit from a day out. The charity provides tickets for all of the family, not just the child, so brothers and sisters can join them on the trip too.

I filled the form in, but had to wait a couple of months for a reply, as the charity is so popular. They agreed to supply me with 5 Alton Towers tickets, as long as I supplied them with document proof of my son's disability. It was a simple case of scanning his diagnosis letter from the doctor and emailing it to the charity. I then received another email letting me know that the tickets will be sent to me in the next few weeks.

I think that this charity is a great idea and will bring a lot of joy to disabled kids and their families. I am really excited about our trip to Alton Towers. I know my little boy will love it.

Thank you Merlin!

Autism and Sensitivity to Smell

We went to a garden centre at the weekend. For us, it is a nice, stress free way to spend the afternoon, but for my son, it is something completely different!

Children with autism can be really sensitive to smells and tastes. This means that they can smell things that most other people can't and a small can really bother them. This can be quite embarrassing if we are in a public place, and my son gets a waft of something nasty up his nose:

" I CAN SMELL A TRUMP! WHO HAS TRUMPED?" He will bellow, within hearing range of most people within a mile radius.

We went into the garden centre cafe to have afternoon tea, but my son was fidgety and visibly upset. He said that there was a horrible smell and he wanted to get out. I could detect a slight scent of coffee, but nothing overpowering. Of course, to him, that scent of coffee was magnified, and insulting his nose. I had to take him outside in the end, as he was getting upset.

When going out with an autistic child it is important to consider these things and it may be wise to avoid anywhere that may have a strong odour, like farms. A trip to the sewage plant is definitely out of order!

Resources at Action For Children

Now my son is registered with the Action For Children Resource Centre, he is able to access the various clubs and activities that they have on offer. He went to his first group last week and really enjoyed it. The club takes on about 15 children per session, although they have 25 children on the books, so places are given on a first come, first served basis, with a booking system in place.

They run after school clubs and weekend clubs, which run for a couple of hours, enough to give me a bit of a break, knowing he is in safe hands, as well as time to spend with my other two kids. The interaction he gets from the groups will help his social skills. and there is a good ratio of staff to children. The clubs have a wide range of activities in each session, from art and cooking to pool and Xbox games. They have an outdoor play area and a soothing sensory room with a ball pool and dimmed lights to calm fretful children.

The centre also runs courses for parents of kids with special needs, groups for siblings and trips during the school holidays. I am grateful for such a fantastic resource, which will be available to my son until he is 18.

Moving House

I posted a while ago about our need to find a bigger house, so that my son can have his own bedroom. Well, it looks as if we are finally set to move to our new house in the next few weeks.

We took the kids to look at the house for the first time and they loved it. I'm not sure how my son will be when we actually move because kids with autism don't like changes in their routine, so I think it may upset him, although he does understand that he is moving house, I don't think he realises the implications.

Update soon....

The Dangers of Everyday Items

When you have an autistic child, you cannot "switch off", even for a moment. The second you take your eye off the ball, could be the exact time that your child chooses to do something dangerous.

My son does not see the potential danger in things that are obvious to other children his age. Last night he was running around  a lot before he went to bed and was all hot and sweaty, so unbeknown to me, he went into the freezer and grabbed a small ice-pack, the type you put in kids lunchboxes. His dad put him up to bed and didn't see any problem in him having the ice pack in the bed with him to cool him down.

15 minutes later, and my daughter was frantically running down the stairs and shouting that her brother had bitten into the (now liquid) ice pack and swallowed some of the contents. The pack had the words "Do not swallow" printed on the front, so I was really worried that my son had been poisoned.

After getting him to drink a glass of milk, and scouring the internet for information, I found the website of the ice pack manufacturer, which thankfully stated that the ice pack contained no toxic ingredients, as they realised that accidents to happen, and children sometimes ingest the contents.

Emergency averted.

Seriously, you have to take health and safety to a whole new level when you have a child with no sense of danger.

The Downside of Games Consoles

In a previous post, I applauded the virtues of the games console as a great way to occupy autistic kids. They are fascinated with the games and the freedom that they offer.

However, I have noticed the downside and it was made all too clear to me today.

Slowly, over time, I have been using the games as a "babysitter". It was never my intention, but I am a busy mom with 3 kids and the games console is an easy way to entertain them. Plug it in and you have peace for a couple of hours, right?

School holidays have had me relying on the console more and more, especially as the weather has been so bad and we haven't been able to go outside much. The problems start when I try to get the kids off the thing.

My son screams as if his world as ended. The console seems to make the kids hyper and they have trouble entertaining themselves without it, as few things seem to offer the same brain-buzzing levels of stimulation. High on games, they start fighting each other and becoming aggressive, with poor levels of concentration. I don't buy violent games, but any game seems to make the kids aggressive due to the competitive element and frustration of completing a level. They seem desperate for their next games "fix" and after coming off one console, grab for the handhelds like addicts.

I have decided to limit the games consoles and only allow them for a short time period after school, with a bit longer on weekends. Hopefully this strategy will calm the kids down a bit and prevent all the aggression build up.

Action For Children

I managed to get a referral from my son's school so that he can access the facilities at the local Action For Children resource centre.

The centre caters for disabled children from  birth to 18, offering respite, support groups, playschemes and days out for disabled youngsters.

A lovely lady came to visit me at home and talk me through the options that were best for my son. They also offer a siblings group, where they take siblings of disabled children for an evening out once a month, which I think is a great idea for my older two, as they can sometimes get a bit resentful of the amount of attention that their little brother gets.

It also means that I will get a bit of a break from having to constantly supervise him and I will be able to do more with the family when he is on his trips ot playschemes. I am thankful that this service, and those like it exist. It will enable my son to gain confidence and a measure of independence, reinforcing and building on his social skills.

Compulsive Behaviour

My son has had a variety of compulsive behavious over the years. A behaviour may be something like tapping parts of the body, or shutting doors. The autistic person feels that they HAVE to complete these actions.

My son has started chewing his clothes. I think it is a nervous habit. He chews the sleeves and collars so badly that they get holes in them.

I have told him off a few times, but I'm not sure whether I should because he may not be able to help what he is doing.

I phoned Autism West Midlands and the lady on the helpline suggested that I buy him some special jewelry called "chewelry", which are rubber necklaces and bracelets for children to chew on. She also suggested trying baby teething rings or making him something out of fabric to chew.

She said that maybe the reason he chews is because he is finding it painful now his big teeth are coming through, or maybe it is to do with anxiety.

I am going to try and get some of those fabric sweat bands from the sports shop and some teething rings. I don't want to encourage the behaviour, but i would rather channel it elsewhere than have him chewing holes in his jumpers.

Freaks, Geeks and Asperger Syndrome

I have quite a lot of friends who have kids with AS, ranging from very young kids right through to young adults. One of my friends gave me a book to borrow. It is called "Freaks, Geeks and Asperger Syndrome".

The book is written by a 13 year old boy who has Aspergers. He is articulate, humerous and intelligent, and writes in a conversational style to the reader. He writes to give the perspective of a person with AS and explains how it affects him and his family in day to day life, as well as the trials of teenage life.

I found the book really useful, because it gave me an insight on what is going on in the mind of an AS child, why they have compulsions and obsessions and how they feel when people bully them or treat them badly. It also explained why they like video games so much. I loved the part where the boy explains various phrases that we use in everyday life that may confuse an AS child, who will take things literally (e.g. "pull your socks up").

I hope my son can grow up to be like the young author of this book, as I found him engaging and interesting to read about and he must be a real credit to his family.

Bike Ride

I took my little boy on a bike ride yesterday.

He still has stabilizers on the bike, but was riding it really well. Coordination can be a problem in AS children, so I think this activity helps him, and it is a lot of fun.

I hope that maybe this summer, we will be able to try the bike without the stabilizers. Although his fine motor skills are quite limited, his gross motor skills are getting better and riding the bike well would give him a big confidence boost.

The Term "ASD"

Since I started this blog, I have been using the term ASD to describe my son.

However, when I attended a conference on autusm a couple of weeks ago, it changed my perception about the term Autism Spectrum Disorder.

Apparently, many adults with autism do not like the term, as it implies they have a disorder of some sort. To them, autism is not a disorder, just another way of thinking.

Therefore, I have changed the title of my blog to "My child has autism", rather than "My child has ASD", and I will no longer be referring to autism or Aspergers as a disorder out of respect to those who find the term offensive.

Stress Bucket

I went to a conference about Autism and they explained why kids with autism get so worked up about trivial things.

They explained that we all have a "stress bucket", the amount of stress we can handle. With autistic kids, their stress bucket is already full, so anything can tip them over the edge, even tiny amounts of stress.

The ASD Child and Video Games

My son loves video games! He has been playing on them since he was tiny, as his big brother has a Playstation. We also have a Wii, some old Nintendo consoles and some DS handheld consoles.

It is common for kids with ASD to become addicted to videogames. I think part of it is the freedom that they get from playing a character in a game. The can do all sorts of things that they cannot do in real life! Whilst I feel it is important to monitor the amount of time my son spends playing these games, I think the benefits can be enormous:

The games help his co-ordination as he learns to use combinations of buttons to achieve his on-screen goals.

The games help him to socialise with others in a multiplayer seting at home and give him a common ground with other children. He has to learn turn taking and sharing with his siblings.He talks about the games with other children at school, which helps his verbal and social skills and helps to break down barriers.

Games help him with maths and reading skills. He plays a Mario game and the character's speech comes up on the screen. He has to use his reading skills to tell what they are saying. This makes reading more fun for him than if he was in a formal school setting. The games also help his maths skills, as you may have a goal to collect a certain amount of objects, so he is making calculations in his head based on that goal.

Video games get a lot of bad press, but the right games, used in the right context, can be an real boost for an ASD child.

Shut the Door.

Apopligies for not updating the blog. My son spilled a drink on my computer keyboard!

Asperger's and Autistic children often have obsessions. My son has a new one: shutting doors.

He cannot cope if a door is left open, and if the kitchen cupboard doors are open he has to shut them all.

The other morning, he screamed at his sister because she did not shut the kitchen door after herself.

One of the great things about having a child with ASD, is the amount of funny questions that they ask. This really brightens my day. Yesterday, we were walking back from school, when my son asked:

"Why doesn't Mario have any nostrils?"

Strange but true....

Board Games

The kids have been off school this week, so a lot of my time has been devoted to entertaining them. Last night we played some board games and it was really interesting to see how my son interacted.

With an Asperger's child, you cannot use a literal term, such as "roll the dice", as they will literally roll it along the floor rather than throw it, as they take every phrase at face value. I have to really think about what I am saying when giving instructions.

When we were moving around the board, my son really struggled with how many spaces to move, or the idea of moving from the same place that he left off. The idea of in-game money really confused him, as he has no concept of money or the value of money, or the fact that if you give a high amount of money you can have change.

There is no doubt that regularly playing board games with an ASD child can help the parent to see where the child has difficulties that need to be worked on, and along with a play setting, they can work together to help overcome these difficulties, which will have an impact in independent living skills in later life..

The Red Beast

Last week. I posted about a book that I was going to buy for my son to help with his anger issues. The book was great!

I posted the following review on Dooyoo about the book:

"We all have a red beast inside us.

Most of the time it is asleep, but it can be awoken, and when it wakes, its eyes and ears shrink and its mouth gets really big and loud.

No, I haven't gone completely mental! The book, The Red Beast, is a book designed to help autistic and Asperger's kids cope with anger. I have a son with Asperger's and I bought this book on the recommendation of a lady who works for a local autism charity, when I was telling her about an incident that my son had at school, where he bit a child who was bullying him.

The book is in simple language, with bold pictures to illustrate the story. The illustations were actually done by a young man who has Asperger's himself, but has gone on to have a successful career as an illustrator and winning an award for creative excellence.

The story is about a boy called Rufus, who has Asperger's. One day, he is playing outside in the playground, when a ball hits him in the stomach. Rufus reacts angrily, and in the picture, you see him turn into a red beast, who hits out at the boy who kicked the ball.

The story then explains techniques that the techer uses to help the red beast shrink and get smaller and go to sleep, so that rufus can go back to normal, things like squeezing a stress ball and popping bubble wrap. Another strategy is counting slowly to 20, and as he does, you see the beast shrink and fall asleep.

At the end of the book, there is a section for parents and teachers, showing good ideas for anger management that have been tried and tested.

My son loved the book, but having a rather literal brain, he couldn't quite understand the bit about having a red beast inside us, as he took it literally! The techniques in the book worked really well though, especially the couning, and I say to him "make the red beast small" and he will count slowly until he is calm.

He took the book to school and the teacher used it in a lesson with the whole class.

I really like this book and I think that it would be useful for any child with anger issues, not just kids with Asperger's, as the ideas in the story could be used on anyone, even parents!

The lady who wrote the book is a parent of an autistic child, and she is an expert in special needs education.

I would recommend this book to anyone who has a child with anger issues.

Summary: A great book for angry kids!"

We Need more Room (part 2)

The lady from Occupational Therapy came yesterday to see whether we would qualify for a disabled facilities grant to gain an extra bedroom. It was a bit like jumping through hoops and many of the questions seemed designed to trip me up:

Me: "My son is causing his older brother probelms at night. He keeps disturbing him during the night and refuses to go to sleep without him in the room".

OT: "If he refuses to sleep without his brother in the room, what is the point of him having his own room?"

Here is another example:

Me: " I thought maybe the best place for an extra room would be downstairs, coming off the living room."

OT: "You can't put your child downstairs to sleep. He might need you in the night."

Me. "His older brother could sleep downstairs, freeing up the upstairs bedroom".

OT: "No. The room has to be used by the person it has been built for."

In addition to the paperwork and questions and approval by panel, I also need to produce a report from a psychologist to back up my request. It sure ain't easy!

On the plus side, my son had a MAJOR tantrum while she was there, so she got a good idea of how bad his behaviour can be and how it affects everyone.

The request goes to panel in a few weeks so watch this space....

We Need More Room!

We live in a 3 bedroom house and have 3 children, 2 boys and a girl. The boys share a bedroom.

There will always be friction when kids share a bedroom, but sharing with a child with ASD can cause even more friction. My oldest son is 11 and has little time or patience for his little brother with ASD. I feel quite sorry for both of them. My oldest son can be quite nasty at times, but I can understand his frustration, as his little brother is very clingy towards him and will not settle in bed without his brother being in the room. Unfortunately, this means I have to send them to bed at the same time, which does not go down with my older son, who thinks he should have a later bedtime.

Another issue is that the little one keeps getting into bed with his big brother and clinging to him, because he gets very anxious and scared at night. He cries out a lot too. This causes my older son to have a lot of difficulty sleeping and in the morning he is exhausted.

I have contaced the local Occupational therapy department, and a lady is coming round this afternoon to see if anything can be done with our home to provide extra space for the boys, or just a quiet area where one of them can go to get away from the other. It is quite a complicated process, and after the initial visit, I am also going to have to provide an official assessment from a doctor or psychologist, backing up my request.

I am not sure how feasable it will be to gain an extra room. The layout upstairs will make it awkward and the only other option is to build onto the back of the house and lose some of our garden. It may be better for us to consider selling the house and renting a bigger place, as we could not afford to buy a 4 bedroomed house.

I will update the blog as and when I get any news.

Getting Dressed

My son has always had problems with coordination, a common trait in children with Autism and Asperger's, which makes things like getting dressed very difficult for him. Buttons, zips and fasteners are a virtual minefield when it comes to manoevering his little fingers around them.

When he is not at school, I tend to dress him in things like T shirts and jogging bottoms, as they are easy to put on, and if he can dress himself he can feel a measure of accomplishment. With school uniform, I make sure that I buy elasticated trousers, rather than anything with a zip, button or hook, as he would have a lot of difficulty with these. He wars a polo neck top, which has 3 buttons on it, and when he gets dressed in the morning, I usually encourage him to fasten one or more of the buttons himself and give him a sticker for his chart when he has done it.

The school has PE once a week and somehow, when they were getting changed yesterday, he managed to lose his polo shirt, coming home in his PE top instead. He very often loses items, particularly jumpers, and it is really important that I label everything.

After Easter, the class are starting swimming lessons for the first time. In preperation, I am encouraging him to practice getting dressed and undressed. He is OK when everything is laid out, but cannot negotiate items that are inside out and struggles with socks and underpants. I have to buy pants with pictures on the front, so he can see which way round they go, but of course, this is going to be the butt of jokes with the other pupils in the class.

To complicate matters further, he wears glasses, and I am worried that he may lose them in the changing room.

The educational psychologist recommeded that the school refer him to Occpational Therapy, and I hope that once they start working with him, he will further improve in his steps toward independence.

Anger Management

My little boy is usually quite passive, but when provoked, he can suddenly lash out by hitting, spitting or biting. It can be hard to get him to control his anger, as it comes on suddenly as a result of his frustation with a situation and his inability to deal with others in a diplomatic way.

There are various strategies for coping with these sudden outbursts. The lady on the autism helpline suggested that I buy a book called "The Red Beast", which is available on Amazon. It is a simple story designed to show the Asperger's or Autistic child how to deal with anger and how anger can build inside. I intend to get this book and I will post a review on here when I do.

Another book she suggested was called "When my Autism Gets Too Big". I checked this out on Amazon, but it was very expensive, and from the reviews on there it seems that the book is basically a five point scale with pictures that the child can point too to show how they feel. I could probably make something similar at home, so it is definitely worth a try, as I think it would be easier for him to show how he feels by pointing to a picture than by trying to put it into words.

Unfortunately, my little boy is being bullied at school by a group of boys, who like to try and get him to lose his temper. I am closely communicating with the class teacher and SENCO to make sure that the situation is contained. The lady on the autism helpline suggested that I download some materials to give to the teacher, as teachers are not automatically experts on autism and Asperger's.

Finding My Way Through The Fog.

Now we have our diagnosis, I am overwhelmed with all of the information out there.

It is really hard to know where to start.

I called Autism West Midlands and the lady was really helpful. She pointed me in the right direction and gave me some practical advice how to inform teachers at the school about Asperger Syndrome and also gave me some ideas about good books to buy on the subject.

The doctor who diagnosed my son sent me a big folder full of information and agencies that deal with autism, so I will probably be contacting a few of them over the next few weeks.

Learning about the resources that are available, as well as your rights and entitlements can seem like finding your way in a thick fog. I am lucky to have a good support network of family and friends. Hopefully, the school will be supportive too and I can work with them to ensure that my son has an enjoyable and fulfilling childhood.

My Story

On the 21st of December 2011, I received a letter that I had ben waiting a long time to receive. A letter from a doctor, confirming a diagnosis of ASD, Austistic Spectrum Disorder, for my son. ASD covers a wide variety of learning difficulties, from very severe autism to the higher functioning type, and people with ASD can range from the completely incapacitated through to people who lead normal lives, have families and hold down a regular job.

My son has a high functioning type of autism. He is academically bright, but has many interesting "quirks" in his personality which mark him out as different from other children his age.

I knew there was something different about him when he was about 3. Up until then, he had hit all of his milestones and we had no concerns. When I took him to the local cradle club, however, I noticed that he didn't really want to play with the other children or get involved with the activities. When the children had snack time, he would be very messy and was unable to drink from a cup without spilling it.

Naturally, I wanted to put doubts to the back of my mind. I made an appointment to see the health visitor, but cancelled, reasoning that I was just being silly. Thankfully, however, she called me back and asked me why I cancelled, reasoning that it wouldn't do any harm to take a look at him.

Initial tests showed that age 3 his language skills were highly advanced, yet his cognitive and motor skills were very basic, comparable to that of a baby. Following this initial result, we were referred to other departments, for more detailed analysis and therapy sessions, although we were never asked if we would like a diagnosis.

He started school as normal, but in reception was still struggling with fine motor control skills, despite his high intelligence. He was put on what is called "school action plus" which means that the school class him as having special needs and can access help from outside agencies, although he would not qualify to attend a special school, as academically, he is doing quite well. The biggest problem at school is social. he does not find it easy to interact with other kids, and gets bullied frequently.

Last year, we were referred to a new doctor, who specialises in this area. She was the first person to ask me if I wanted a diagnosis.

OF COURSE I DID!

I was fed up of trying to explain to everyone what was wrong with him, as I didn't have a "label" for his disorder.

After doing a questionnaire with the school SENCO, the result finally cam back that he has ASD, primarily Aspergers.

This, for me, is the start, and the reason I am writing this blog.

*UPDATE I have restarted this blog after discontinuing it for a few years. My son is now a teenager and in a special school that is perfect for his needs. During this time, my daughter was also diagnosed as autistic, so I will hopefully be touching on a variety of new and interesting topics now that the blog is up and running again.