Discharged from paediatric services.

  • We had an appointment at the hospital on Tuesday.  Now this post may be a bit random at times because I’m still trying to process it.  The consultant has discharged Oliver from the paediatric hospital service aged 5.  There’s nothing they can do for him.

Now on one hand it’s nice to have some honesty but on the other hand it’s 20 years since Max was diagnosed and there’s still nothing they can do?  I know the NHS is at breaking point, so I understand them wanting to lighten their books and get rid of cases where they can’t do anything. But it feels like we have just been basically told to get on with it.  The doctor said “yes his behaviour might be unmanageable now but it may calm down as he grows up.  We have no sleep clinic here it’s miles away and I don’t know how you go about referrals” which made me ask who does know?  Apparently family support groups can help but they are full round here and aren’t really able to help anyone else at the moment.  Social workers are overworked and we aren’t an at risk family so no chance of getting one of them.  School nurse should know more.  If anymore non-autistic behaviours arise see GP for a referral.  The problem is as I learned through Max, is that all behaviours are put down to autism once they have a diagnosis.

I feel quite alone now and that it’s down to me doing the speech therapy work- we have a great ST, he sees her once a month and she has given me her phone numbers so I can check I’m on the right track.  School aren’t doing his IEP’s, he actually got sent home with homework last Friday and asking around it was the same as everyone else’s- Finding Nouns.  So you can guess how well that went down.  I know he’s my child and my responsibility, but surely school should be doing their part as they agreed to take him and the extra funding he came with.

I wonder if deep down I was expecting more from the professionals, if I was expecting science had moved on in 20 years.  I suppose it has in a way because the doctor made sure to point out to me that it was probably something from my genes that made him this way.  It’s always nice to hear that.  We have our first appointment at genetic counselling next month so we’ll see what they say.  I think overall I feel abandoned.  It’s down to me and the ST to reach him and make him fulfil his potential- whatever that may be.  I am not trying to make him conform, like school is, I’m trying to find a way into his world and share mine and maybe meet somewhere in the middle.  I’m trying to find a way to ease his frustration and make him happy.  I’m trying to stop the violence and tantrums and tears.  I’m trying to get people to realise he’s just as important as everyone else and has a voice and rights.  I’m trying to make him know he’s loved, no matter what he does.  I’m not worried he will fail- he can’t, I’m worried I’ll fail him.

He’s different- not less.

 

xx

Poison- or as I call it, liquid paracetamol

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Max is at respite this weekend- he’s gone to the caravan with his lovely other family. As a treat I thought I would book tickets for the zoo for Saturday for the little ones as an end of summer treat.  I should know better than to book anything.  It’s Popples last week at nursery before she starts nursery school in 2 weeks, Oliver is back on Monday- big year 1!  So on Tuesday I get a phone call from nursery saying Popples isn’t well, running a fever and crying.  She’s not a crier.  And she was ok when I dropped her off.  So I went to pick her up and sure enough she is hot as hell.  Great, last week in nursery and she’s going to miss it.  She has recovered well, don’t know what it was, Calpol a cool and soothe on her head, wrapped up on the sofa, lots of sleep and she’s back to her normal self so she can go in and say goodbye (with cake) on Friday.  Huzzah!  I hear you cry.  But wait, not to be outdone by his sister, Olly comes down with the same thing the next day.  Higher temp, floppy, and not wanting anything- I made the mistake of offering him a drink, and got a tearful wobbler for my trouble.

He let me, after a few minutes of persuasion and showing how I do Popples ears, finally take his temperature  and at just over 39 degrees I knew it was time to poison him.  Well if you saw his reaction, the screaming, thrashing, scratching in self defense you would be forgiven for thinking I was trying to kill him, but it is actually strawberry flavoured liquid paracetamol especially designed for children.  Brings down temperatures, and soothes aches and pains.  It comes with an oral syringe for ease.  Yep so easy.  No mess, just squirt (or dribble) into the mouth and most kids swallow it no problem.  Oliver on the other hand, does not care for the syringe, or teaspoon or juice with it hidden in.  Once you have him in position, legs and arms restricted you can actually get the syringe into his mouth.  Now over the years he has developed various techniques for getting it back out and I thought I had got all angles covered.  Yesterday I checked his mouth and could see nothing so thought it had been swallowed.  Silly me.  Of course he hadn’t, he’d somehow stored it in his throat and when I released him it got sprayed (literally) everywhere.  I’d seen him swallow so don’t know how he’d done it.  It is also the stickiest substance known to man, which is really great when me, him the sofa has been sprayed with the stuff.  Anyway after much sweating, and soothing words and restricted limbs, I managed to get some into him, and his temp did come down.  I also had to ask his dad to pick up another bottle on his way home from work- we buy generic now at half the price.

So he has his favourite dvd’s in a pile and  is sat under the “poorly blanket”.  It’s almost time for the next dose, and I hate it.  I hate that I can’t explain it will make him feel better, I hate that he won’t look at me afterwards, I hate that he runs away shouting “no mummy”.  I hope that he will one day understand, Max took years to understand “much better” but now he does I can dress wounds, give him meds and apply creams to his eczema.  I’m hoping he is well enough for the zoo and well enough for his new term.  His immune system is not as robust as his sisters and the lack of sleep doesn’t help either.  I don’t know if offering a smoothie after his poison is just asking for trouble.  Ah well I like to live dangerously!!  Medicine time- I just hope the neighbours don’t call social services 😉

 

xx

Shoe shopping, dentist and haircut.

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These three things fill me with dread.  We had to go shoe shopping this morning for new school shoes as term starts in 2 weeks.  I called in the eldest, Emily, as helper today much to her delight!  I can’t do it alone, it’s physically impossible.  It started well with Oliver in his major buggy watching Popples get measured and choosing shoes.  She tried on every pair in her size and eventually settled on the ones with “little diamond sparkles”.  So far so good- and the added plus that they were in the sale.

How soon the smiling turned to screams of “no more shoes! No! No! ”  and kicking and using his old shoes to try to smack the lady measuring his feet.  We got a rough size and she brought out a selection.  We chose the no-scuff-toes ones and I had him held close talking calmly to him while they tried to fit them.  It didn’t make much difference, by this time he was sobbing, “no shoes, mummy no shoes”  and everyone is feeling like crap.  She checked them, he tried to do a runner, they fit, she asked did we want to try anymore on. (Ray Liotta face) We went and paid (fifty quid for boys school shoes!) but I couldn’t put him through anymore so we paid and left, but I also told the manager that the girl had done a sterling job considering what Oliver had been like.  I don’t know why shoe shopping is so traumatic, Max used to be the same when he was younger.  I wonder if it’s the invasion of personal space, or the feel of new shoes or just because it’s new shoes.

Haircuts are another traumatic time.  We have a fabulous hairdresser called Helen and she used to do Max’s hair so is used to dealing with customers that wiggle.  We have had a couple of dodgy cuts where she just couldn’t finish due to distress by all involved which meant me nipping in at night time and snipping long bits off.  We have had cuts where she’s been lay on the floor next to him snipping bits off.  She gave me her internet password so I could put you tube on my mobile for him to watch (until he managed to grab it and throw it) and last time we took a dvd portable player with Sing! for him to watch.  Last weeks cut was probably the best yet.  One major wobble, one grabbing scissors, and only had to finish the back on the floor.  I am trying to take him regularly so he gets used to it.  He will now let me chase him with a hairdryer and brush his hair so it’s progress.

The dentist- well she checks his teeth whilst he is on my knee screaming his head off.  That’s after I’ve carried a screaming, writhing child up the stairs to the dentists room.

Some things that cause stress can be avoided or be built up to but these three things can’t be avoided.   He needs shoes, he needs his teeth checked, he needs haircuts.  I am hoping that as he becomes more familiar with the situations things will get calmer and easier.  We talk about things, we role play, we read books and I try to present a calm front.  I don’t know why he feels so strongly about these things, I can guess, but I will always try to make them as painless as possible- even if that means buying the most expensive shoes in the shop!

xx

 

Oliver v’s the range rover

This morning started like most other- getting three children ready for the day, drop Popples at nursery, wrestle Oliver in the car and drop Max off at placement.  All done on time- even arrived early for school and was looking forward to Foundation Stage’s production of Jack and the Beanstalk.  We’ve had to grow beans at home and keep a bean diary, and there’s been lots of work done in school with the story being at the focus.  Oliver was part of the beanstalk and had to wave a leaf at the appropriate time.  It was going to be interesting at any rate.

So we pulled up at school and was just finishing listening to Room on the Broom before getting out.  Now I know my son is a runner and a flight risk, we had a near miss just outside the house a couple of months ago where I let go of him to put the key in the door and he ran down the neighbours path into the road.  I shouted and ran after him and got to him a second before the car did.  A couple of weeks ago he got past the teacher on the door in the morning and ran off to the Bug Hotel/outside readers corner.  Fortunately he went down that path and not the one next to it as it would have been onto the road.  Therefore I am super vigilant and hold onto him all the time when he is mobile.  Today I had him by the wrist as it was hot and he is sweaty and I didn’t want to lose my grip on him. Five steps from the gate he managed somehow to get loose and was on the road in front of a range rover who fortunately wasn’t driving too fast and I had reached him and snatched him out of the way.  He is so fast and seems hellbent on escaping and running into dangerous situations that he has no comprehension of.

Teddy’s gran saw the whole thing, she said he was fast and I did nothing wrong but its hard to feel that way when I know him and he’s in my charge.  School made me a cup of tea and had a chat about his Houdini type antics.  I watched some of the play and he was happy as anything waving his leaf.  I think Teddy’s gran got upset too, she used to work with kids like Oliver and it’s never nice to see a near accident. I use reins everywhere else but never needed them to get from the car to school.  Well that’s what you think until this happens and you think “I knew what he was like why did I not do it as a precautionary measure?” When I went to collect him after another day of “what if’s” and sweet tea I took his reins and put them on.  Whilst walking with him out of the gates he managed to get the shoulder straps off.  So I did my research and have ordered him some super strength reins designed for children like Oliver.  They weren’t cheap- nothing is when you put special needs in front of it, but they may save our lives. Teddy’s mum said this afternoon “I bet you can never relax, always waiting to run ” and I am.  I have seen Oliver watching where I put my keys, watching which key I put in the door and I know he is waiting for his chance.

I’ve tried talking about cars and squashing.  Used simple language, told him NO.  Nothing works, he doesn’t understand danger, he has no clue as to the seriousness of consequences, he thinks mum shouting “no” and him having a time out is worth it to “catch” a car.  I need to be more vigilant, and I need to stop being lulled into a false sense of security.  Lets hope these reins help- at that price they had better be good!

Bing Bunny is Banned!

IMG_0497Ok so that’s like a headline you get in the tabloids, he’s not banned totally, just the DVD’s.  We have noticed that Oliver’s speech has improved recently- not chatting in a conversation way but when he has been playing he has been jabbering to himself using more words than his usual noises.  Playing in the sandpit we’d build a castle then he’d put a flag on it then fall on it and say “oh Pando!” from the episode where Pando falls onto Bings giant sandcastle.  When playing with his Bing toys they would do things rather than just standing in a line.

However things took a different turn when he started throwing books into the bath or washing up water (whatever was most convenient at the time), started widdling on the floor and taking things off his younger sister-just for example.  We watched the swing episode together and then watched others as the swing episode showed us something we didn’t expect – the naughty person was never told off and in fact his behaviour was not even slightly discouraged. The basic premise is that Bing is on the swing, Pando comes and wants a turn so they agree that after counting to ten Pando can have a turn then it’s Bings turn again.  However the little miscreant Pando does not stick to the deal and starts messing about and the worst thing is that his minder, Padget, enables his behaviour.  SHE CARRIES ON PUSHING HIM!  She carries on pushing him whilst saying “come on it’s Bing’s turn”.  Why?  Just stop pushing him and tell him to get off.  But wait- it gets worse.  Bing is by this time totally fed up so runs to the swing in the hopes of pushing Pando off and gets hit with the swing.  Bing then gets a lecture on HIS behaviour! He shouldn’t have tried to seek justice, but no one tells Pando off or tells Padget she needs to sort Pando out!

Anyway watching more episodes (I’m all Binged out now) no one ever gets told off.  It’s always that’s ok, never mind, don’t worry about it.  Now I’m sorry but where are the consequences for their actions? Even at nursery my kids have a thinking board.  If they hurt someone or do something not nice, they get their name on the thinking board and told why it’s there.  And they are a similar age to the Bing characters.  Peppa Pig gets told off if she’s mean.  Ben gets mad at Holly when she upsets him and she apologises.  Why does Flop not tell Bing off for ruining Sula’s mural? Ok there are some good points too like don’t mess with geese which is a valuable life lesson but unfortunately my son has decided to pick out all the wrong behaviours so for now there’ll be no more watching Bing!  He can keep the toys and we’ll try again when he’s a bit older for the dvd’s- the books he chose to “bath” are dead- maybe we should put them in the bye bye box ;-p