Cygnet Course Continued: Understanding Behaviour

The next Cygnet session was all about understanding behaviour. We looked at what is acceptable and unacceptable in society and how the rules change for those on the autistic spectrum. The course refers to those with autism as having ASC, or Autistic spectrum condition, rather than the more popular ASD, with the D standing for "disorder."

We learned about what triggers certain behaviour and studied the iceberg principle, which states that the behaviour itself is only the tip and there is a lot going on underneath. We did some group games and activities, which were about how close you could comfortable get to people in different social circles (very funny/awkward!) and ordering certain behaviours in terms of how acceptable they are perceived to be. We also watched some videos of parents with autistic children and how they deal with certain behaviours.

The next session is going to be about tackling bad behaviour so it will be interesting to see what techniques are discussed.

Cygnet Course Continued: Sensory

This week at cygnet, we learned about sensory issues in autism. This is a big one for me, as most of my son's issues are sensory related. He hates strong smells and flavours and gets irritated by tight, scratchy clothing. He hates loud noises, like a baby crying, but of course makes plenty of noise himself!

A lot of the parents on the course we surprised how many autistic behaviours are linked to sensory processing problems. People can be either "seekers" or "avoiders" and the senses extend beyond the five main ones to also include vestibular (balance) and proprioception (body awareness). We watched videos and looked at quotes from those affected by these issues as well as looking at techniques that can minimise sensory overload, like distraction techniques or masking equipment like sunglasses, ear defenders, music players or perfume.

I found it very useful, especially as Occupational Therapy have refused to see my son because apparently "they don't take on kids with ASD." CAHMS have promised to intervene on my behalf, but until then, I can try out the techniques learned in the course.

Barnado's Cygnet Course

I was very lucky to receive an invitation to the Barnado's Cygnet Course, which is a parenting course for carers of kids with autism between 8-18. I liked the fact that it was tailored to older kids and was also intrigued by some of the interesting topics that will be covered; my primary interest being sensory processing issues.

I'd missed the first week, which was just introductions but the instructor kindly gave me a brief refresher of the main points covered. She also gave me the course booklet, a questionnaire to fill in and a pen and pad for notes. I think we do a questionnaire at the end of the course to see if we have improved in confidence after applying the techniques.

Today's lesson was communication.

The lesson was a PowerPoint presentation and all of the slides are also featured in the book, which is handy. The tutors look at each slide and discuss them with the group. We also had a couple of activities about communication, which also served as ice-breakers, with the group discussing how, why and what we communicate. We also did a game, which was putting a jumbled sentence in order.

We learned about overcoming barriers to communication and also about social stories and issues specific to autistic kids.

The session was fun, but I didn't find it particularly relevant to me, as my son doesn't have many of the issues discussed today. Next week will be more important for me, as it's about sensory problems. It was nice to meet other parents of autistic kids though, and the instructors were lovely.

I will report back next week after attending the next session and give my feedback on how it went.

Getting a Social Worker for My Autistic Child

Expect lots of hoop-jumping when you have a child with special needs. Nobody makes it easy and just because you have a diagnosis, it does not mean that you will automatically be connected to the services you need. Kids don't come with a guidebook, especially autistic ones.

A few of my friends who have autistic children have recommended that I get a social worker to advise on appropriate services for my son. At first the idea seemed terrifying: a Social Worker? I'm not a child abuser or neglectful parent, why would I need one of those? But a little research allayed my fears and I now understand that child protection is only one of many roles performed by Social Services. A social worker can perform an assessment on a child and advise on appropriate services and funding to help you.

Easier said than done. Having decided I was going to get a social worker involved, my first problem was finding one. It seems that they are quite an elusive species. After a LOT of internet research, I dialled what I thought was the right number, only to find out that it was the department for adult social care. The lady kindly gave me another number to dial.

Unfortunately, this too, was the wrong number. Right department, but wrong number. They needed a referral from another team in order to assess my child. She gave me ANOTHER number to dial.

At this point, I was a bit shaky and teary. I'd spent ages researching and phoning around, only to hit dead ends. I was physically unable to dial the number as I was too upset. I got my husband to do it. He got through and the lady took some details from him and said she would call back. It was only when I checked the number on the Internet that I realised that particular department dealt with vulnerable and neglected kids rather than special needs ones. Oh great, so now I'm probably on some "list" that I really don't want to be on...

...anyway, I haven't had a callback yet, although I have a horrible mental image of a SWAT team bursting into my home later today to drag my kids off.

And all because I just wanted advice about Saturday clubs...!

*UPDATE Social services were excellent and gave me a full "Carers Assessment." This resulted in my son being offered a place at a youth club for autistic children and also a grant for me to have some relaxation. This could be a spa session, gardening work or decorating. It allowed me to get my bathroom decorated and create a little sanctuary for myself.

Unwanted Advice

If you have a child with ADHD or Autism, the chances are that at some point, you have been the recipient of unwanted advice.

I suppose that the very worst type is unwanted advice from complete strangers, who see your kid having a major meltdown in the street and just HAVE to wade in with their opinion...

But it is advice from well-meaning friends that "gets" to me the most.

I think the problem originates in the way that the friend reacts to your conversations about your child.

I don't think they always understand that you sometimes want to "sound off" about stuff that is going on. Just because you are talking about some aspect of your child's behaviour, doesn't necessarily mean that you are asking that person for advice or a solution. Most of the time, you just want to talk about things.

We all know people that think that they must provide a "solution" to everything we bring up in conversation. If you mention you are going out somewhere, they butt in with a huge list of directions to the place before you've even had chance to explain that "I know exactly where it is, thank you".

I know that they are trying to be helpful, trying to be a good friend even, but it is really annoying!

So now that I have mentioned that my son might have ADHD, people feel they need to "fix" the situation by giving me lots of unwanted advice.

I have received the whole gamut in just a few days; the fact that I should go and buy OTC sedatives from the pharmacist (I don't think so), discipline him more, stop giving in to him, blah blah blah. One friend even offered to come round on evening to give me some "parenting advice". Er, thanks.


It all becomes background noise.

Sometimes I DO want advice. Sometimes I'm crying out for advice! It's just the unwanted advice I don't like. If I want advice, I will ask my family, or a health professional, or an organisation that deals with autism.

So please, if you are reading this and you are a person prone to giving unwanted advice to others, please stop! Be a good friend, be a hearing ear, nod in the right places, but don't wade in with your opinions, unless you are asked for them.

If, on the other hand, you are reading this because you are the recipient of unwanted advice, you have my deepest sympathy. Please try to be tolerant to your friends, they are only trying to help. Perhaps you should invest in a small set of earplugs...

And if you know that your friends are prone to give advice every time you mention your child's condition, maybe it is time to start talking about something else when they are around!

Attack Mode

The simplest of pleasures, like a day out with family, can turn quickly into a disaster if you don't have your eye on the ball, ESPECIALLY of your child has autism.

We took a nice family trip to the science museum today. There was a new, outdoor, section called the "science garden" with lots of lovely interactive features. One area had a water feature where you could race plastic ducks. My son was obsessed with it.

We were busy looking at a water wheel and I thought that my son was right by us, but unbeknownst to me, he had wandered off back to the ducks.

At that moment I heard and almighty scream! I turned around to see my son yelling at the top of his voice because a kid had squirted water at him. Not only that but the kid and his whole family were laughing at my sons extreme reaction.

He didn't take well to being laughed at and gave and almighty roar before launching himself at the laughing family, teeth bared and fists flailing.

Luckily we managed to grab him before he thumped someone.

Unfortunately, wherever you go, there will always be inconsiderate IDIOTS who spoil the fun. A simple apology from the child would have prevented things from escalating, but no, they have to point and laugh, don't they?

And as for my son? He's got to learn that people can be like that sometimes. He has got to stop overreacting. He needs to control himself better. It is going to take time. But if he doesn't learn this important skill, life is going to be tough. You can't go round hitting everyone who upsets you, even if you feel like it...

And me? Well, I need eyes in the back of my head, but I doubt if even the science museum can provide me with those.

Return to CAMHS

 Some time last year, I wrote about our uneventful visit to CAHMS. During the visit, my son sat like an angel, which resulted in us being quickly discharged and dismissed!

This time was different. During THIS visit, my son was his usual bouncy self. He shouted, he spun round and round, he interrupted and he told the counsellor that he was boring...

The funniest moment was when the counsellor started a sentence and my son interrupted him.

 Man: Your son is a child...

Son: WHAT???. Obviously I'm a child! What are you talking about?

Me: He hadn't finished his sentence. Just listen.

Man: Your son is a child...

Son: You already said that. I am a child.

Me: Just let the man talk!

Man: ...your son is a child who has needs that we can address here at CAHMS.

I was so relieved that the poor man got to finish his sentence, although he did indicate that my sons constant shuffling, interruptions and lack of understanding of danger may be symptoms of ADHD. Further sessions with specialists may reveal a further diagnosis.

It was an eventful visit and we have been out on a waiting list to have further sessions.

How to Get Noticed by Staff

Sometimes it's handy to have a child with autism around...

Yesterday's was at the local hospital visiting an elderly friend. I arrived at the ward and the staff were acting like I was completely invisible. The receptionist was looking down, shuffling papers, other staff members were chatting amongst themselves. I only wanted to ask someone which bay my friend was on.

Suddenly my son, who has sensory issues, screamed out loud "IT STINKS IN HERE!!!! GET ME OUT, GET ME OUT!!!!". It was a ward for the elderly and to be honest, the smell of urine and other things was quite overwhelming, even for me.

Anyway, suddenly a big bustling nurse came out, asking what the problem was. I was swiftly directed to my friend and got the help I needed.

Now THATS how to get quick customer service. I'm thinking of taking him everywhere now; the ideal solution to all my customer service needs!

Charlotte's Tandems

I just got this in an email today, so I thought I'd share....

Charlotte's Tandems is a Registered Charity that lends tandems to people with additional needs or disabilities for FREE.  We are different to many other charities as our Borrowers have the use of our bikes for two months in their own time.

Have a look at our website to see how much fun people can have on our bikes.

Please could you tell your contacts about us and put us on your website and newsletters?

Best wishes,

Alex Reeves

Charlotte's Tandems

CharlottesTandems.co.uk

Registered Charity 1148053

Click on these words for links to the Borrower's Form, the Charlotte's Tandems Facebook group, Twitter Feed @CharlottesTand and our Video

...sounds cool and I like the fact that it is free!

Encouraging Independent Dressing Skills

I used to dress my son every morning but now he is getting older, his privacy is becoming more important to him.

I have a system in place that seems to work for us and encourage him to dress himself.

Firstly I try and buy clothes that are easy for him to out on and off. Things like t shirts are ideal and so are elasticated track suit bottoms that he can just pull up and down. I try and limit the amount of clothing I buy with fastenings and buttons and zippers, although this can't always be avoided.

In his wardrobe, he has two big tubs and two small baskets. One tub has t shirts inside, the other has track suit bottoms. The small baskets contain underpants and socks respectively. His more formal clothes are on hangers at the back, out of his way.

When he gets up in the morning, he simply selects an item from each tub and dresses himself. It is a nice simple method and allows him to feel grown up.

Socialising and Autism

My son isn't great at social skills.

He can't read the emotions of others very well and he has a tendency to concentrate on his own needs and feelings first. He can't read a room and he doesn't take cues from the body language of others.

Last week we went ice skating and everyone was skating anticlockwise. He skated clockwise, which seemed to sum his general outlook quite well; the boy who skates clockwise in an anticlockwise world.

Since we have been homeschooling, I have been even more eager to seek out opportunities for interaction with others. I'm signed up to goodness know how many newsletters for home edders and parents of special needs kids and generally, if something is organised and it is nearby, we will join in.

So I got an email a few days ago about a local sports group for disabled kids and their siblings and the good news was that it was a short walk from my home. I love anything like this because the other parents don't look at you like you've got two heads when your kid is acting oddly. With special needs families there is a kind of "we are all in it together" buddy mentality and natural camaraderie.

So I turned up with my son and received a warm welcome. So far so good.

The first game was where you dance around and have to run into a corner. All of the corners have colours and then someone picks a colour and everyone in that corner is out. My son was "out" very early in the game, which caused him to stomp off in a rage.

He soon found the chill out room, which was full of food and drinks. Whilst the other kids played together in the main room, my son sat on his own in the other room. He complained it was too noisy in the hall and he needed to get away to chill out.

When he did finally rejoin the group, they had moved on to team games, which he had no concept of. He soon tired of all the teamwork and whilst the other kids cooperated nicely in a game of volleyball, my son ran around the perimeter of the hall with a hula hoop round his waist and a green glittery pompom on his head. He was having fun, just not the social sort I had hoped.

I came away wondering what I had gained from this experience. My son had enjoyed himself most when alone and not interacting with the others. Should I be forcing him into these situations, I thought to myself. He doesn't seem to be getting anything out of it.

I found a balanced article on the subject on the Your Little Professor website.

One Autistic child said:  “If you like being on your own, then be happy with your own company and don’t let anyone convince you it’s wrong.” His advice to “pushy parents” is “Never force your child to socialize. Most Aspies and autistic people are happy to just be by themselves.”

So for now I won't be pushing it, although we do have a home-ed art class this week and a kids party at the weekend. Maybe I will bring along the hula hoop and green glittery pompom to keep him occupied...

Autism and Logic

I was reading the newspaper today and there was an article about the oldest man in the world. I was showing my son the article and photos of the man. He was quite impressed.

"If he is the oldest man....." He replied,

"....who is the oldest child in the world?"

I laughed so much, the tears were rolling down my cheeks. Kids say the funniest things!

Perfect Pitch

Quite by accident, I discovered that my autistic son has perfect pitch.

Perfect, or absolute pitch is when a person can sing or play a note without any external reference. For example, if I ask my son to sing a C note, he can do it exactly.

This is very rare in neurotypical people, but autistic people are 500 times more likely to have perfect pitch than the general population.

The way I understand it is that he sees musical notes similar to the way we see colours. We wouldn't confuse blue with red in the same way that he would not confuse a C with an E.

It was quite odd how I found out he had perfect pitch. We were watching a DVD of Disney's Frozen when my son remarked that the soundtrack was higher on the DVD than the cinema version. I didn't believe it, but when I played an audio recording of the Frozen soundtrack, it matched his singing exactly and when I compared it to the DVD I found that his comments were, indeed, correct.

I am interested to explore where his musical abilities will take him. He is interested in learning to read music, which is what we are doing right now. Whether this translates to the ability to play an instrument well remains to be seen, as his motor skills and coordination are quite poor.

Autism is AMAZING and my son is a musical superman.

Birkbeck Babylab

Back in January of this year, I received an email from a very nice lady called Bryony inviting me to the launch of an exciting new project at Birkbeck university: The Babylab. Although I wasn't able to attend the launch due to prior commitments, Bryony was kind enough to send me a press release about the project, as well as links to further information. It made for fascinating reading.

The Babylab project launched in January as part of a £2.5 million Autism study calles STAARS (Studying Autism and ADHD risk in siblings). The project will involve over 400 families from Europe and the UK.

The aim of the project is to study infants who have older siblings with autism and ADHD and to monitor them from birth, as they have an increased risk of developing these conditions. With earlier diagnosis come earlier intervention and improved outcomes for families.

The research team are currently looking for families with infants ages between 3-10 months old who have an older sibling with autism or ADHD to take part in the study.

Professor Mark Johnson, who is leading the study, says: "

We are very excited to be embarking on what is one the most innovative collaborative research projects into early markers of autism and ADHD to have been carried out to date.  Combining the data and expertise at the Babylab in London with that of our partners across Europe and North America will enable us to drive discoveries that will make a real impact on the lives of people with autism or ADHD and their families.”

The research will involve cognitive tests, neuroimaging and behaviour tests to study babies and toddlers as they play. The families involved in the project will participate in questionnaires and interviews in order to give the research team a fuller picture of the child's background and influences. 

For more information on the project, visit the research team blog, or view the Babylab podcast.

If you are interested in taking part in the study, you can contact Janice on 020 7079 0761 or email staars@bbk.ac.uk

Overload at School

OVERLOAD!!!!!! Too.....much...stuff....

Ok, yesterday we had to take in:

Reading bag
Reading Record
Weekly Planner
A cheque for a museum trip
PE kit
Lunchbox
Fruit containers provided by school (one for fruit, one veg and the kids have to tick a card to say they have had their fruit and veg that day).

So I gave the teacher the cheque, because I knew it would get lost otherwise and I told her to make sure my son took the homework out of his bag and handed it in with the reading record.

When my son came out of school he was carrying:

A letter (swimming starts soon, another thing to remember...)
His bag containing his homework, reading record and planner
His lunchbox and empty fruit containers.

So then I say to the teacher:

"How come he hasn't handed in his homework and reading record?" (like I asked her to check)

and she looks at me as it to say "I haven't possibly got time to do that"

and he says "I have handed it in".

and I say "No, you haven't, its in your hand"

and she says "Yes, its in your hand"

and he looks puzzled.

and I take it from him and give it to the teacher. And I also mention this weekly planner, which they gave the kids weeks ago to write in and so far, ours is blank because my son doesn't know what to do with it.

and then we trundle home, overloaded with our glut of letters, lunchboxes and bag and fruit containers...because we walk, even when it's raining, which incidentally, it is.

And sometimes, I think I look like a bag lady or a one man band with all of this stuff hanging off me.

Rewards System for Good Behaviour

I now have a reward system to encourage good behaviour  and it seems to be working quite well for us.

I have a big bag of treats that I let the kids dip into every evening if they have been good all day.

OK...its bribery basically...but it seems to work for us!