The Assessment

News hot off the press from the initial assessment by the ppaediatrician, my son does not have ASD and it is very unlikely he has it!

Again, you think we would be celebrating by now, but no, we have not been discharged as yet as his behaviour he is apparently presenting at school is still very challenging.

If only?

However, there is a huge difference with his behaviour displayed at school and at home or social settings we take him to. Of course we have some issues with his behaviour, but very different to the ones he has at school, our issues is bed-sharing to go to sleep, occasionally running off (although a recent marked improvement) and the occasional fussy eating. The aggression is not as bad with us, but yes, sometimes he can be a grumpy uncooperative bugger, but nothing I cannot deal with.

The paediatrician also said maybe I am too much of an expert on my son and preempt his tantrums a bit too much, and should let him get on with it and try to problem solve these incidents for himself, and then yes, get yelled at by some some chav family that my son has got crossed at their child ha!

So that’s where we are, in limbo and no man’s land. His school have made it clear they don’t find his behaviour easy to manage, but have no idea where we go from here.

Been suffering with multiple chest infections and colds as a family, and stress of this probably doesn’t help me.

Looking forward to resuming our son’s gymnastics class tomorrow after a week break because of illness and hoping he is still making good progress here!

 

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School ☹️ Home 🙂

I don’t know what to say, I feel sorry for my son. He is trying to love school, I remember his first official day starting school, he tried to hold back the tears and he was constantly blinking, and his lower lip was starting to tremble. I could see he was nervous about his first day. Then upon collection as we took the first week of school off of work and collected him early everyday, he was so excited to see us and I wanted him to be enthused about going to school, and gave him a medal for his bravery.

His medal for bravery for his first day at school

However, as weeks have gone by and he has had his first month at school, our son is being constantly reprimanded for bad behaviour, we have been called into meetings and I am not even sure I agree with their way of handling it. We are being criticised we are not firm enough, whereas I think their tough love approach is not helping, making his meltdowns worse and I feel sorry for him. I don’t do time outs or naughty steps, I have tried to in the past, but I just end up in a battle of wills with my son and it does no good for me either, and just end up making myself feel more stressed and angry. I rather do time ins for my son and I think they work better. I think the school want a quick solution and more worried about staff ratios, hence, I want an assessment of my son completed and if he needs more support and funding for more one on one attention, I am prepared to fight for that.

https://www.positiveparentingconnection.net/time-out-vs-time-in-whats-the-difference/

Last weekend was a real downer, the school called us in and the headteacher said ‘it was the worse behaviour she had seen in her 30 year career span’. I realise she might want to emphasise the seriousness of the situation, but I don’t appreciate her professionalism for saying it or how even saying that helped. After a good cry that evening, I refused to mope about the entire weekend with my son. We went to playgroup as usual, the volunteers wanted to hear things had turned around for our son starting school, but unfortunately I had to say they hadn’t. However, he had a nice time at the playgroup and I couldn’t fault his behaviour there. We went to the library to return some books and get some new ones afterwards, and the only struggle we had was he wanted to run off while we were trying to walk to the library. This has always been one of the ongoing issues we have had, running off, fussy eating (some not his fault as he has had intolerances and a hyper sensitive gag reflex when he was younger), refusing to sleep sometimes even though tired (this is something we experienced a lot less of now) and his dependency on me to fall asleep, he is scared of the dark and being on his own. However, we dealt with the running off issue and had a good talk with him, and have to report he said to me at the beginning of this week ‘Mummy, I am learning to walk by you’.

The school wanted me to punish him all weekend, but I was never going to do that, I talk to him about his bad behaviour and told him he mustn’t do these things and we talk about alternatives, but then we move on and give him another chance. We enjoyed the disco that I got tickets for ages ago despite us all being a bit coldy, he was less apprehensive about a darkened, noisy dance hall, loved the falling metallic streamers and the giant balloons, and I loved helping him trying to reach and hit them back up in the air. We didn’t stay as long and left early, before my son got too hyper and timed it just right.

The other thing my son has been doing really well at is his preschool gymnastics classes, joining into both parts equally and letting me move to the upper viewing gallery part way through without a fuss. He has earned a Star of the week sticker 3 times in a row since the beginning of term and his first badge, and he has truly earned it and it is a big leap forward for him.

Star of the Week

Balance Bar work

Trampoline

Today we went to a church fayre run by the organisation that runs the playgroup we regularly go to, first it was nice to see my son taking the initiative to do some crafty things as a lot of the time he isn’t interested. Particularly the sand art work as it required concentration and patience, and it seemed very therapeutic for him. He also picked out this bracelet for me to make up for the jewellery he has broken in the past (his words), I forgive him for that as he was a lot younger and going through a grabby stage even though I tried my best to keep things out of the way. He also picked out a necklace for his nan who has recently been recovering in hospital, and might finally be going home again this week!

Getting crafty and tombola winner

New bracelet for mummy chosen by lo

Hoping we carry on with the progress at gymnastics, school I am not so sure where we are heading with that.

EHCPs – our reality!

Ordinary Hopes

Before my disabled son came into my life I was blissfully unaware of all the difficulties some parents have in getting their children’s needs met.

I assumed that the right wheelchairs were provided when needed.
I assumed that the right school places were available.
I assumed therapy needs were met.

Then along came Adam!

You might have heard it said that the hardest thing about having a disabled child isn’t caring for them, but fighting the battles to ensure that their needs are met by the appropriate services. It is true!

Many years ago, when Adam was at nursery, we started the process of getting him a Statement of Special Educational Needs, the legal document to ensure his needs were met. It took 19 months from start to finish and he ended up starting school without having a Statement in place.

The process left us baffled, emotionally battered and exhausted. Our child had huge and pretty obvious…

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Bemused?

Fabulous? Yes, really she is!

So what’s the latest?

My son is still a hooligan apparently! I also upset an old distant friend by something I thought was quite funny, oh well.

I am just bemused and slightly amused at the same time, maybe there was an element of truth in there that hit a nerve ha the last time we agreed to meet up, she blew me out by agreeing to go on holiday the same time we were suppose to go to a concert. It was no skin off my nose, as went with my then current bf instead, and still enjoyed it, but didn’t like being let down at the last minute. Still you move on from these things and this was years ago. Still if you jump straight to negative conclusions in a joke, I think it probably says more about your head than mine and have other things to think about than petty drama with people I hardly see.

As for my son’s hooliganism we have the referral appointment to go to in a few weeks time and we have agreed a stricter privilege reward system at home with the school, and see if it helps. However, as for joining in more with the welcoming committee as encouraged that is not going to happen, not after the welcome and the Spanish Inquisition from one parent we experienced.

Still it’s the weekend soon, but regretting getting more baby disco tickets as we are all feeling ill with colds, boo hoo!

Blah!

Feeling blah!

First week we have really tested the back to work/school routine, done our best, but time is tight and puts us under pressure. My lo has seemed happy, but yes, still getting into trouble, groan, headteacher now wants a meeting with me. Not even thinking about it. My son’s referral assessment appointment finally came through earlier this week too after all the drama that came with trying to achieve getting it in the first place.

Feeling tired, tired and not even where I want to be at work, not talking about job roles, but just with my workload. My OH still being stretched thin with his mum going back into hospital again, just don’t know when the drama will stop.

Trying to have a nice weekend, saw an interesting production of the Stick Man today with my two favourite boys, and hoping for another good Gymnastics session tomorrow morning for my son like we had last week!

Last night before…

No, not Christmas, but before starting school.

School uniform bought & all labelled ticked.

Stories about starting school read to our boy ticked.

Settling in sessions attended ticked.

Continued going to weekend playgroup to mix with other children ticked.

Mummy more nervous and apprehensive than my son, most definitely!

We had a nice last day before starting school, managed to do a few overdue chores to the house over the weekend, it made me feel better before we had a home visit from his teachers. He was better behaved than the time the health visitor came to see us, perhaps because the focus was more on him and felt the health visitor focused too much on my history than on my son, which was actually really draining for me.

We had a nice afternoon at soft play and the playground, gave him a relaxing bath and a bit more time to play with his trains before bed, and let him choose some books from our last library visit for his bedtime story. So, time now to settle my own nerves and hope my boy has a nice first morning at school.

 

Playing and reorganising his train layout

Trying on his uniform

Our weekend and starting school countdown

We had a pretty good bank holiday weekend, stayed local, enjoyed the newly refurbished local splash park before it broke down on one of the hottest weekends of the year, grrr, typical ha! Had a lovely morning at our usual weekend morning playgroup, Thomas themed it as went to watch the new Thomas the Tank engine film at the cinema and also went to a Thomas Play Experience session, big layout track, motorised trains and lots of kids(big & small)!

Cooling down at the Splash Park

Mmm ice cream

Trip to the Lego store

Thomas Play Experience session

Thirsty work after bouncing like mad on a bouncy castle

Parents manage to drink some BH weekend mojitos

Thomas Play Experience session

Thomas Play Experience session

Got a week left until my son starts school, yes, the 7 day countdown has begun, feeling nervous, more than my son most probably. It doesn’t help that all the childcare issues over the last few months haven’t built up our confidence. Feel the nursery washed their hands of him and the state of their arithmetic really meant 2+2=5, that is the best analogy I can come up with how they were drawn to their conclusions and made the relationship between us unteneable. The childminder who we once thought was promising seemed to be hinting our son was possessed like The Omen and coming up with unprofessional diagnosis’. The health visitor who we have been dealing with is absent minded, I think she was just hoping to get us off her books and never hear from us again, oh well, sorry to disappoint. What can I say about starting school? Trying to keep positive, finally got school shoes last weekend for him, don’t think we have anything left to get for the winter. We have read a few stories from the library about starting school to him and got some starting school exercise books that my mum or myself have worked with him a bit on. I am hoping for a miracle or answers once and for all, wish us luck we need it!