Am I Dreaming?

Son: Oh, Oh, I think this might be a dream. Mom, is this real or is it a dream?

Me: It's real. You are not dreaming.

Son: I don't believe you. I had a dream the other night and you were in it and I asked you if it was a dream and you said no. And it was. I don't know if I can trust you now.

There really is no answer to that, is there......?

Cygnet Course Review

It's now been a couple of weeks since I finished the cygnet course for autism parenting.

Did I find it useful? Did it help?

Yes and no.

It hasn't been some "magic pill" that prevents meltdowns. I've still had plenty of cringeworthy moments and public meltdowns to deal with over the past week or so.

However, it has helped me to understand and analyse my son's behaviour. Now, when a meltdown happens, I can pick it apart and try and work out what caused it in the hope of preventing future recurrences.

It's not a perfect system. Sometimes a scenario can hit you that you weren't expecting and you are left unprepared. But at the same time, now I know that there are a lot of things I can do to help keep my son comfortable and less likely to have a meltdown. I've learned distraction techniques and ways of helping him with his sensory overload.

I'm glad I did cygnet. I feel it is another layer of armour in my daily battle!

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!