Fighting the same fight:-it’s like Groundhog Day

I’ve not written anything in an age because I have been exhausted from having to explain again that just because my son is in mainstream school he is not mainstream.

I have had many meetings with school, I have offered to help with basic makaton, I have demonstrated to the teachers how I deal with Olly’s distress before he reaches crisis and I still get phone calls telling me what he’s done now. I see the caller id and my heart sinks.

3 weeks ago I got a call to say he’d had a meltdown and members of staff had been struck. I went into school and arranged four afternoons to come in and show how I work. We put a de-escalation plan in place for all staff members to follow and we’d follow it at home. Three afternoons went ok, I made notes on where it’s falling down and the fourth afternoon he started cycling up. I tried to follow the plan but his play doh and sand were not available and neither was his emotion fan. He uses the play doh and kinetic sand to squeeze and the emotions fan to pinpoint how he’s feeling so we can understand and act accordingly. If he’s angry, move him to somewhere quiet and dark away from his peers, if sad a cuddle and reassurance. You get the picture. So I’m doing this at home, with good results, more speech, more trust, I think he feels more understood. At school we spent an hour putting this in place and when I come to use it it’s not there. Banging head against a bloody brick wall.

So we have a meeting Wednesday where they are going to try to claim that nothing’s working and maybe he’d be better somewhere else. I will counter with it’s not been tried sufficiently or to standard. But I wonder if it’s worth looking elsewhere if they can not follow a five point plan. He has an EHC and an IEP and it’s not being implemented.

We don’t know what to do for the best. They’re happy to take his extra funding money but not do the work. He will be moving into year 3 in September and he won’t cope with the current set up. He’s autistic. Expecting him to just stop being autistic because he’s in mainstream is ridiculous. A few tweaks and he can stay with his friends. I worry that kids like Olly are being failed because mainstream are stuck in mainstream ways and special school places are very limited due to funding cuts. He doesn’t fit the criteria for special school, he isn’t “normal” enough for mainstream. He’s in limbo. Homeschooling him would be more isolating for him.

We will see what happens this week but I don’t see an easy solution to this 🙁

Xx

Olobob Top.

Olobob Top was created by Leigh Hodgkinson and Steve Smith.  It is a programme currently shown on Cbeebies aimed at pre-schoolers.  I knew nothing about it until May this year when Oliver’s TA came out of school with him and told me about this “bigtop hill thing” programme he’d found on the computer.  It had apparently amused him no end so she was going to find the proper name and make a card so he could put it on his “working for” board.

Now I know that sounds nothing in itself, kids go through phases but let me expand.  From age 2 Oliver went to a private nursery.  He stayed there (3 sessions a week to help socialisation) until he started reception class.  He never brought me a picture home.  Never painted anything for me.  In almost 4 years I never got a painted picture, a drawing or even a scribble.  I asked school not to send home teacher made things like mother’s day cards unless he’d done it because what’s the point? That’s a personal choice, if others want them then that’s fine, what works for me doesn’t work for everyone.  It hurt a little especially as Popples was painting mad and my cupboards were full of her pictures, except a space I’d saved – just in case.  The day after Mrs D (TA) had told me about this thing he’d found on the computer I went to pick him up as usual and she came out smiling.  “Show mummy” she said to him and he presented me with this printout of a scene from Olobob Top (yes she found the right name) that he’d created himself.  He pointed to something and whispered “Tib” so I repeated it and praised his beautiful creation.  He looked quite pleased.  We showed it to Popples, I took a photo and sent it to his dad at work.  I found the blue tac and stuck it up.  He had made it!

The next day he came out again and he was smiling and Mrs D was practically bouncing. He handed me 2 sheets of paper and said “olobob top”.  I looked and almost cried- they were paintings!  not only paintings, but you could actually see 3 different figures and they were recognisable as Tib, Lalloo and Bobble.  This was the start of a new chapter for him.  Usually uncooperative at craft time, he painted, he crayoned, he drew on the conservatory walls (who cares it’ll wash) he made play doh models, he made characters out of stickle bricks and he verbally requested “computer”.  He often speaks in a whisper but some words were getting louder.

My models

Olly’s models

The biggest thing was reading.  I know I’ve talked about Julia Donaldson’s books allowing me to spend quiet times with him, but things changed when Mrs D gave him 2 books for his summer gift.  These were his books, they had his name in them.  One was a sticker book, and the other was a flap book.  He doesn’t like stickers.  I tried to show him the stickers go in the book to make scenes but I got screamed at “NO MUMMY! IT’S MINE!” ok fair enough.  He took his books upstairs out of my reach.  That night my husband put Max to bed and when he came down he told me that Oliver was currently sticking stickers all over his bedroom.  He didn’t know what to do because he doesn’t do stickers so I went up and said “what are you doing?” “Sticking” was the response – TO A QUESTION! “Sticking olobob top” he expanded while I stood looking at the stickers on the carpet, duvet, wall, pillows and chest of drawers.  “That is fabulous sticking! You are so clever. It’s beautiful. Well done!” The pride on his face nearly made me weep.  The I got invited onto the bed to look at the flap book.  I tried opening it but it got pulled away so I sat back and let him lead.  Eventually he moved it to within eyesight and pointed to the figures naming them.  He’d point, say the name then look me in the eye (we don’t demand eye contact in this house) and wait for me to repeat it. Then he’s nod and reconfirm.

Our next reading session was instigated by him.  He pointed to a pink bird on the cover and said “BIG” but I thought he said pink so I said “Pink”.  He shook his head, and I thought I was going to lose him, he doesn’t like it if I don’t get it straightaway.  He sat there and repeated it but we were having a miscommunication.  Eventually he took his finger and ‘drew’ the letter b on the bed, then I then g.  Light dawned “oh Big! big bird”. He then turned the book over, pointed to another bird and said “little” I repeated it then he pointed to another bird and said “small”.  I didn’t know he knew that word! We were having a conversation.  He was waiting for me to repeat, giving me eye contact and being in charge.  I didn’t touch the book.

Every day he was saying “upstairs, Olobob Top book” and we were reading the way he wanted to.  He was gaining in confidence and trusting me not to take over and let him lead me for a change.  One day he pointed to Tib and said “it’s Bobble” so I copied and said the same, he looked at me and burst out laughing and said “it’s not Bobble, it’s Tib” oh dear, silly mummy.  And that was the game that session, making mummy look a fool! But it paid off because the next day he finally opened the book and I got to see the inside, but just the first page. “Lalloo’s dress” so I added the word spotty. “Tib’s pants” so I added the word stripy.  Expanding his vocabulary with no pressure for him to say it back, just giving him a word he might not have but if he chooses not to use it at that time that’s fine.  He told me shapes, fish, trees, the other characters.  If we are making stuff he says “you could make it up” and gets stuck in.  He also has expanded his wardrobe thanks to Tib’s stripy pants, which is lucky as he ripped the bum out of his tartan ones swinging on his curtain pole, and all his other jammies were stripy.

2 more books were released (and bought), although I’ve not proved myself worthy enough to be able to read Norbert’s shop yet I live in hope 🙂 We were talking about Christmas with Popples and he came over and said “Olobob top toys, yes, Christmas” so I had to tell him there were no toys which we confirmed by googling, so he asked for “dvd yes” and again I had to show him there wasn’t any. He did his sad face but quickly rallied and asked for Go jetters instead.  They have a laptop where he goes on and plays games, makes characters and scenes etc.  He asks for it “computer cbeebies” or whatever he is after that day.  He chooses to read with me, he does crafts, he has taken a passion of his and instead of it being confined to one repetitive game or action, he has brought it into more aspects of his life.  He hums when he is doing things now, he talks quietly to himself (still a lot of jabber but some words) when playing, he seeks me out to do things instead of me having to instigate it, he knows his choices are important now.  They always were but I don’t think he knew that.  Now he knows if he wants to talk about the size of birds for half an hour, then mummy will stay and have as much enthusiasm at the end as at the start.  I know there is a long, long way to go.  I know that I may never have a conversation with him that runs along more conventional lines.  I know his language is still miles behind.  I know the sound of his voice, I know his laughter, I know he can joke, I know he is clever, I know that what he gives is the best he can and I know that’s enough. He’s calmer, he’s more patient and he’s more willing to try new things.

I got a painting off my son.  He was 6 and I got his first painting.  That was enough, everything else that has happened is a bonus.  We were lucky he found something he felt so strongly about that he wanted to share.  I know that Leigh Hodgkinson, Steve Smith and the Olobob’s don’t realise the world they’ve opened to my son has helped him, and us, so much.  Thank you

xx

“I don’t want to be your wife anymore”

Those were the words I finally had to speak to my husband a few weeks ago.  They were not said in anger, they were not the result of a row.  Since being married I feel he has become more secure, which is great, but I have felt less secure.  We stopped talking, he’d play on his phone of an evening when we were supposed to be watching a film, he’d come in from work and be on his phone, and yet when it came to him wanting to do something, we were all supposed to just be in good moods and grateful he wanted to spend time with us.  As you can imagine, feeling like a piece of furniture is not conducive to a great relationship so we did have a row about his phone and lack of interest and he said he’d try harder, especially with the kids, and he has.

I still didn’t feel right.  Instead of looking forward to him coming home, I dreaded it.  I hoped he’d have to go away for work more than I usually did and I decided that I needed to figure out what was going on in my head.  I don’t like doing that.  I usually bob along, making sure everyone is happy and that’s enough, except it’s not is it? Not really.  I file things away in my brain and don’t deal with them.  I’m not good about talking about my feelings either, it’s hard enough figuring out what I’m feeling, never mind explain it to someone else.  I was really unhappy.   He knew I was unhappy.  I kept talking about how I didn’t understand the world, how I never have understood it.  I don’t “get” people and their games, and why they lie, and why they don’t just say what they mean and I feel like I don’t belong to anything and never have done.  Except for my kids.  I fit with them.  They don’t have expectations of me in the same way.  They expect me to be there and look after them, obviously, but they don’t expect sparkling conversation or little amusing bon mots, I’m just there to be mum which I have done for, like, ever- so it’s something I know I can do.  Kids are easily amused, you just act daft and tell poo jokes.

And that’s when I knew what the problem was.  It’s the expectations that fill me with anxiety and unhappiness and the fact that I know I can’t fulfil those expectations.  I am not like most people, I am a nervy, anxious person and according to my husband very black and white about certain things like lying.  I don’t understand lying.  It drives me insane.  Why bother telling lies- you will get found out then trust will be broken and I will think you were trying to make a fool of me.  Ok you don’t have to be blunt but there’s nothing wrong with being honest.  Anyway, I’m going off the point.  The point is I can’t be the wife he expects, society expects and that I think everyone expects.  I couldn’t be the daughter, the sister, the girlfriend that was expected and I’m tired of failing.  So I told him I didn’t want to be his wife.  I told him if he wanted to go and find someone more “normal” he was welcome to, and I wouldn’t hold it against him and we’d make it work with the kids.  As I said, I am not good at expressing myself and the conversation went on for quite a while, as he was checking if I wanted to leave (no), if I was looking for someone else (no), if I was having another breakdown (no).  I just wanted to have my friend back who used to laugh with me, support me, have fun with me, talk nonsense with me, and all the other things we used to do.  I told him being a mum of 4 with each child having such great needs, and the lack of sleep meant I couldn’t be “a wife” the way he wanted.

Then he asked what I needed from him.  I told him I needed no pressure and I needed to know what he wanted.  He wants to be with me.  He wants us to stay a family.  He wants me to deal with everything that’s happened over the last 40 years, however long that takes, and he wants me to be happy.   He told me he didn’t give a **** what society expected.  He told me he always knew I wasn’t like everyone else, then proceeded to list all the ways in which I was different.  The list was quite extensive!  But, he said, I made life more interesting and challenged his ideas on lots of things and came at things from a different perspective.   Him being distant didn’t help our relationship but me being unhappy and maybe pushing him away definitely didn’t help.  Catch 22 situation.  So we are together, in that we are sharing the house and the children, but also back as friends.  Since our chat I feel relieved that he is willing to stand by me while I sort through my head and that he doesn’t expect me to change with regards my “oddness”.  I have found someone I don’t have to pretend with, pretending is exhausting.  I might get a chance to be myself.

I know this may have been a really selfish action, it’s all about me kind of thing, but I didn’t want him to stay and get nothing from it.  He’s allowed a life too.  I’ve told him he doesn’t have to do everything with me.  I’m not keen on going out so if he wants a night out with mates he can do it guilt free.  It’s a work in progress though as I’m not the only one in this relationship with issues.  Just as he has helped and supported me, I will do the same for him, when he’s ready.  We are happier now.  I don’t know how long it will last, I suspect our relationship will always have problems but I think we both feel a bit more confident broaching things with each other now.  If I was going to be with anyone, it would be him, we just have to define what “wife” means to us.  For the first time in a long time I feel a little bit optimistic about the future.  Just a little bit.

 

xx

7 days, 3 hospitals, 2 pox and one pizza ceiling.

It has been a very eventful week. My daughter had a couple of worries with the baby not moving and thinking her waters were leaking so she went to the doctor who immediately sent her to the maternity assessment unit as her blood pressure was high, her pulse was racing and her temperature was up.

At the unit, they hooked her up to monitors, started a trace on the baby, called a consultant and told us they had 15 minutes to treat if it was sepsis and may have to deliver at 33 weeks.  As you can imagine, this did nothing to help the blood pressure situation and with the consultant appearing in 10 minutes (I know, right, you never get them to appear that quickly) we were a bit worried.  I had taken her to the hospital, her husband was at work.  I had a word with the midwife who said to phone him because if they have to do anything it will be done quickly.  So they hang a drip with fluids and paracetomol to try to get the temperature under control.  She had a cold so then they were thinking flu, did swabs, took blood, and then moved her to HDU on the labour ward for 1-to-1 care until stabilised.

Thankfully, they managed to get everything under control and four days later she was released.  Unidentified infection treated with broad spectrum antibiotics, baby measuring fine.  Phew!  Lets go back to enjoying the easter holidays.

2 days later I get a text off one of the mums at school.  Her son has chicken pox.  He is in the foundation unit same as Popples, they have FS1 and 2 in the same unit.  I said I would keep and eye on Popples and if she didn’t get them I would be bringing the kids round for a pox party.  Didn’t need to go anywhere, she had a couple of suspect spots til after the bath- then she was head to toe, even in her hair!  Brilliant!  They could get the pox finally done with and not miss any school.  Oliver showed no signs except a snotty nose which he tends to have until spring anyway.  She had a raging temperature and couldn’t sleep due to the discomfort, so that was fun.  The calamine cream didn’t seem to work, so she has had a lot of cool baths.

2 days after that I was putting up the trampoline they have got for birthdays in the hopes it would save my furniture.  I managed to get the springs onto the frame which made them happy and they sat on it whilst watching me sort out the safety net thing.  As I was opening the metal rods that go at the top to keep it stiff and in place, I didn’t check to see exactly where they were.  They sprang open and caught Oliver in the eye.  Totally my fault, I know better and I should have checked and rechecked.

He started screaming, under his eye was bleeding and I applied a cold compress and tried to check his eye.  He wouldn’t let me look, I couldn’t drive so I asked my daughter to take me to A&E.  After 3 hours a doctor tried to check him but with him not being very cooperative and just alternating between “no, hurt” and singing get well soon, we didn’t get too far.  As a precaution he sent us to another hospital 20 minutes away that has a specialist eye department. Thankfully the nurse there let us jump the queue as by this point Oliver was really agitated.  The nurse and I had to hold him down, he had stuff squirted in his eye and the specialist finally spoke. “No abrasion, no damage to actual eye” and I almost cried with relief.  Oliver couldn’t tell me if he had blurred vision or if it felt wrong so we had had to go to the hospital.  He gave us some cream as the cuts were near his eye and he didn’t want it getting infected.  6 hours after setting off for casualty we could finally go home.

That night in the bath, I noticed a couple of blister spots on his back.  Yep he had the pox too.  I offered him some medicine last night and he nodded and took it so must have been feeling rough.  He’s having a pyjama day today. Hopefully all spots will have scabbed by school on Monday.

Oliver has returned to his old favourite pastime of throwing things.  He is bigger and stronger now so can throw a lot further.  Gooey louie now has no snot left as it’s all been thrown to the ceiling as it sticks.  I made pizza for lunch today so they can pick at it throughout the afternoon as they haven’t had much appetite.  Oliver took his into the kitchen, I thought he was eating on the picnic mat he’d made me put down for them the other day. He came in with a half eaten piece, put it on the plate then took another piece.  He came back again with a half eaten piece so I went to see exactly what he’d been doing.  I saw a bit of cheese on the floor so I picked it up and asked “what’s this” he looked up and said “Stuck!”.  I followed his gaze and sure enough it was stuck.  Bits of pizza stuck all over my ceiling, and tomato sauce where the cheese bit had dropped off.  He is obviously doing some kind of gravity experiment or it must be really good fun to make things stick to the ceiling.  He helped while I was cleaning it up by pointing out the bits of sauce I’d missed.

An that was a week of our restful Easter holidays where I was hoping to recharge a little.  Max got the best deal, his respite people stepped in and took him for a few days as he was stressing about Emily in hospital and the whining of the poxed one gets right on his nerves, so at least someone got a break. Oh and we managed to get the appeal done and sent off too.

xx

 

Dr Ranj and Get Well Soon

Dr Ranj is a real doctor and he’s on all kinds of programmes but the only one we are interested in is Get Well Soon on Cbeebies.  He is a very smiley patient doctor who is visited by a whole range of puppet patients with a variety of ailments.  He listens to them, listens to their worries, talks about their illness and how to help it get better.  Simple premise yes, but until this programme overlooked in my opinion.  Children get poorly or have to have injections and have to go to a place that often smells funny and let a practical stranger look at them and are supposed to make sense of that.  Now I know we talk to our kids about trips to the doctor, dentist and others and can talk about getting better- but how many of us do it to a funky song and dance routine?!

Oliver has spent a lot of time being poked and prodded when going through diagnosis and then the genetic testing so as you can imagine he is mighty upset when he has to go to see the GP.  By the way our GP’s are fantastic, very patient and friendly.  It usually results in me saying what I think is wrong while he turns all the lights off and crawls under the examining table so he can’t be looked at.  At home we play with the medical kit regularly, the toy one obviously, and the little ones now know how to look in ears, eyes, take a blood pressure and give mummy 500 injections.  If I don’t say “Ouch” they do it until I do.  I hoped it would help with doctor visits.  Alongside this we started watching Cbeebies, we were Milkshake fans for a long time, and came across get well soon.  The kids were entranced.  It is colourful with lots of singing and not everyone is happy.  But it’s ok, they don’t have to be.  It’s ok to be scared and worried and sad that you’re ill.  And more importantly it’s ok to tell the doctor if you are feeling those things.  Dr Ranj explains without being patronising.  Watched a brilliant one on asthma.  My sons favourite is the ear infection though, the song made him giggle and he actually tried to join in the singing.  His version went “doctor, doctor, ear- OW!” which was close enough and he loved doing the OW! bit and dancing.  (the words are “go to see the doctor when your ear goes OW”) so pretty close.

Anyway he had to go, coincidentally with a suspected ear infection and although he didn’t like it much he was much better at being examined.  He let our doctor take his temp, look in his ears, listen to his chest, almost let him check his throat and suffered the pulse-ox finger monitor for 15 seconds which was brilliant.  Then he went and turned the lights off.  I understand that the NHS is under strain and GP’s are supposed to keep to 10 minute appointments but I have to say that mine never make me feel rushed and if I go in with a sick child, they take the time to talk to the child, explaining what they are doing and why.  I think it’s important that the child feels like they are involved, important and have some say.  When Popples had a hip infection, she was only just 3 but the doctor said to her “can I just put you up here on the bed and have a look at this poorly leg” which made her feel like she had a choice.  When he said to Oliver “can I see inside your mouth” he got a “No no no” so he didn’t push it (we weren’t overly concerned about his throat, it’s just if he sees him he likes to do as thorough a check up as possible as we don’t go that often) , but then got to listen to his chest.  It builds up trust and lessens the fear.  I think all doctors should watch get well soon, some of the ones we saw at hospital had no idea about children even though it was their specialty.  All I need now is for my GP to learn a few song and dance routines, although I suspect the kids would then be feigning illness in the hopes of seeing him everyday!  If you haven’t seen it, you should give it a go.  I should warn you though that the songs can get stuck in your head.

Until next time- Be happy, be healthy and get well soon!

xx

Playing together

Oliver and Popples are 2 years apart, he’s in year 1 now and she’s in nursery.  I always worry that as she grows she will leave him behind and they will both have an element of loss and loneliness.  Yet as I watch them interact and I look back on videos (I’m old school I always call everything recorded “videos”) I worry less.  They have a bond.  They may not always understand what each other is trying to do but they try to get it.

Oliver got hold of my tablet and was watching the videos of him and her playing.  One game he invented was to shout “aaaahhh” at her and she did it back and they got louder and more giggly.  One of them was of Popples putting a happy meal box on his head and saying “burger head” amidst giggles whilst he chased her about with the box still on his head.  She watches him play and I can see in her eyes she doesn’t quite get his obsession with building towers, but then I see her face change, when she wants to play with him, and as young as she is I can see her figuring out how to insert herself into his world and be accepted.  Usually passing a brick, or counting or naming the colour and she’s in.  They have eye contact and a common goal and he jabbers, she talks back- leaves a space for him to answer- then answers for him if there’s no verbal response with a “yeah?” at the end.

He sometimes wants to play with her, he hangs back a bit more, obviously unsure of her more complex games but she notices and invites him in.  They like doing “shops and cooking” as he can name foods and can play tea parties, drinking pretend drinks and nomming pretend food.  He likes to chase, monsters is a popular game in our house accompanied with lots of screaming and bumping into each other.

In the bath last night they were blowing bubbles in the water, he took his turn then looked at her expectantly- being tired she missed the cue, but when prompted, joined in.  Then a bout of screaming at each other and splashing water all over the floor and it was hair washing time.   Laughing he used an octopus toy to rinse her hair, she laughed and then used a fish toy on his hair.  If I had done that there would have been tears, but it was their game and they played for an age- until there was hardly any water left in the bath!

He has confidence in a lot of situations that she lacks and she looks up to him to see if it’s safe.  She is wary of parties and changes at school, but he had his party Wednesday at school so when it came to hers on Thursday she was ok about it cos “my bruvver had one asterday”.  She helps him with his speech and making sure I know what he wants, she accepts him and loves him and looks up to him.  He’s her hero.  He helps her with her confidence and being brave and climbing.  She wrecked his game the other day and where 6 months ago he would have smacked her he shouted “Peppy.  Go away!”.  The fallout was short lived,  It’s much more fun being pals.

I wonder how much is instinct.  When something scary happened when they were playing upstairs he got her into the bathroom and shut the door- obviously the safest place upstairs.  Is that just what older siblings are “programmed” to do?  (obviously they weren’t alone long, certain footfalls a parent hears and knows that it’s not good).  Although they have rivalry over toys, time on knees etc I think their relationship is really good.  I love watching them play, especially when they don’t know I’m watching.  I think I need to worry less- that bond will only grow stronger, so I will just enjoy watching them and their relationship that is pretty much 50/50.

 

xx