‘Equasym’ – what’s your experience?

When J was diagnosed with ADHD end of last year before his ASD diagnosis, this May, we were recommended to put him on medication. He was struggling to cope with school and After School Club and it was advised that his FAST assessment might not happen until he was on medication.

We eventually decided to put him on it, ‘Equasym XL’ 10mg and from day 1, school show a huge difference. After School Club, not so much as the medication wore off pretty much as he started there at the end of the school day.

Over the summer holidays, the days he has been in Summer School Club, we have given him his medication. But every other day, we haven’t bothered. The doctor said it doesn’t have to be given every day, it doesn’t get built up in his body and there is no repercussions to him taking it as and when.

Of course, one Summer School Club day, I forgot to give him it. The next time he was in club, I was greeted with “so is that us starting again then?” by the club leader….

Basically she was under the impression that he SHOULD be on it every day and that if you take him off, it’s like starting afresh. She was quite annoyed that I told her what the doctor told me. Of course, getting an appointment with the school doctor is nigh on impossible at the moment.

So what’s your experience with Equasym? Is it supposed to be given daily with no interruption? Is the School
Club leader wrong to dictate in a roundabout way that I should be giving my son drugs every day?

Summer fayre

He just can’t do it can he?? He’s been asking for MONTHS to go to the local fayre, it’s a beautiful sunny day and it’s costing me a fortune. But it’s just not fun…

These inside castles with footballs and huge yoga balls in it. He just cannot stop hitting other children with them. And really hitting…. Really violent.

But say to him “no you can’t go on it” and we have a major screaming paddy.

I asked him three times to stop throwing the balls at people and to no avail. He even sees me watching him and he STILL does it.

Family days out are just not fun….

I seem to spend every day saying “are you listening to me?”, “why are you not listening to me?….. All day, every day…..

“Don’t use that as an excuse….” WHAT?!

I collected him at 6pm last night, and apparently he had had a bad morning. So Lauren, the manager for the day sat him down and told him that if he didn’t behave, he wouldn’t get to go on the trip today………..

My concern for threats like this;

– J continues to have a bad day through meltdowns out of his control. Is it wrong to then punish him for something he can’t control?

– He’s booked to go on the trip, which I will have to pay for, whether he goes or not, as I have booked him on it.  I am also working, hence the reason he is in School Club in the first place.

He’s never going to be perfect and he has learning difficulties, he has autism. When will they accept that?

I remember last year when I told them that he had been diagnosed with ADHD first. I went to the main Manager Carol and told her; her immediate response? “Don’t use that as an excuse”……….. Excuse me?! Don’t use my child’s learning difficulties as an excuse for his behaviour?! He has learning difficulties, hence he doesn’t behave like other children.

The “bonus” if you can call it that, is that now he also has the diagnosis of autism, he is classed as disabled. So he can’t be thrown out of school club without a battle from me.

When he was 3/4 years old, he was thrown out of his childminder’s. He had major meltdowns and tantrums and, like now, liked to throw things, push things, and generally to us, and everyone else, be the child from hell. One day I got a phone call while I was at a wedding, saying he had to be collected, he had pushed the childminder’s own child and she had bumped her head. I couldn’t collect him, I was photographing someone’s wedding, I couldn’t just stop and say “Sorry no photos!”, my husband, as a manager was in an important meeting, he couldn’t leave immediately, it wasn’t an emergency. Long story short, we were called bad parents for bringing up such a child…..

I see this childminder regularly, she continues to look after one of J’s class-mates… I am SO tempted to say to her that she needs to learn about autism, just like we are doing. Then she will realise that bad behaviour in a child does not always mean bad parenting….

Meanwhile I sit today, work away at putting other people’s children’s images online for them to view, and hope that J is enjoying Blair Drummond Safari Park today, and is behaving as well as he can be………

Summer school club disaster

Ok joy – about to start Day 2 of 3 days at Summer School Club. This is the summer holiday version of J’s After School Club. He goes for various days in the summer, for me to be able to get some work done in the daytime and for him to play with other children.

For the past 2 summers, we’ve had bad days at SSC and even had the threat of him being thrown out, even though it’s council run and he’s gonna be there until he’s at least into High School.

Went to pick him up yesterday and got the rollicking again…..
“he’s been disruptive all day, shouting, stamping, arguing, throwing things. We had a 4 year old in as a trial for starting After School Club in August and he was really upset.” etc etc etc

I really thought this summer they would be more understanding as we now have the diagnoses of ADHD and autism, and he gets his meds before going in.

But no…. Yet again, I’m made to feel like the bad parent and J is made to feel like a bad child. And I don’t know whether to punish him or what…..

He says he couldn’t help it…. I don’t know if he really means that or is old enough to be able to know the right things to say to avoid getting into trouble (he’s 7).

Just about to take him in for Day Two of 3 in a row? I’ll have a chat with him to behave but I know he’s gonna have a meltdown at some point today. He’s in school club till 6. He woke me up at 0645 playing the Wii loudly as usual.

Today is going to be a disaster…..

 

UPDATE

So I took him and got greeted with this comment by the Leader of the day “J, we are going on a trip tomorrow, aren’t we? Well, you’ll need to behave today, so you can get to go on the trip……”

Emmmm, he is booked to go on the trip, he will be going. If he has meltdowns today, he has meltdowns. How can they say things like that? If he is doing things he can’t control because of his ASD, threatening him isn’t going to help…

Last year when I pulled the Manager aside and said that’s him been diagnosed with ADHD, she said “Well, don’t use that as an excuse……” Excuse?!? Just because you can’t cope with him….

This is where we all need help. Until we found out just a couple of months ago that he has ASD, we have done the same thing. “You need to behave J”. He does try, he even says himself now “I will behave Mummy, I won’t try, I WILL behave….”

Poor lad…..

It’s my birthday

It’s my birthday today. A biggie – the big 4-0….

After an awesome family holiday, followed by a surprise weekend away with DH to Switzerland, today is a bit of a downer…

School holidays with J are always difficult. He gets so bored because I’m either working or sleeping. I’m do tired these days…..

Lanzarote, July 2012

Better days…

Auch, yesterday ended up being a good day and actually thinking about it, J HAS been pretty good this holiday, and with no medication.

But he has been allowed to do what he likes; swim, play, eat – whenever. The good and bad of an all-inclusive.

Sad to be going home tomorrow actually. Sounds like the weather in Scotland has been pretty rubbish. Really enjoyed this sunshine. Good for my moods too.

Holidays… Not that easy with a J in tow…

Starting this blog while on holiday with DH and J.

We deliberately picked to return to this all-inclusive hotel in Costa Teguise as they had a kids club.

All fine and well when your kid is 3 to 6 years old. Not good when J is 7. And try explaining to the not-very-good-English-speaking club reps that J has autism and is best in a contained environment….

So he’s let loose in the big pool. Not bad considering he only became swim-safe early this year while on holiday in Miami.

Unfortunately he is getting picked on by kids and teenagers who think it’s funny to take the mickey out of him….

Not such a relaxing holiday after all…..