Another Academic Year over!

So that’s the end of another academic year and how lovely is this?

A fabulous picture frame of Holly’s achievements this year. Being a teacher I see both sides of the end of the academic year report or ‘ Record of Achievement’ or whatever your school may call it. Our youngest daughter has an end year report that has lots of data and fancy bar charts and yes it’s been explained to me twice and I still don’t get it! Personally I prefer words and pictures. Ha ha ha!

Holly attends a brilliant special school (one of the hardest but best decisions we ever made!) and they do a year round folder that has photos from different activities. It’s fabulous. Such a lovely insight and keepsake from her world at school especially as Holly isn’t able to tell us about it. We love it. We are so grateful for all the wonderful things the staff at Hollys school do for her. They are all amazing.

It’s good to know just how your child is getting on especially if you hardly ever go there and like us your child gets a taxi there and back everyday.

We love seeing every little step that she makes. Over the years, we’ve come to accept that Holly may never be able to read or write (yes I’m being realistic and that has been difficult believe me!) She will need support for the rest of her life for everyday self care and life skills.

But we appreciate every little step. We hope that Holly will eventually lead as independent a life as is possible for her. After all we are not going to be around to support her for ever.

I have overheard parents comparing their child to another or complaining that their child has not achieved the same as another child. I wish parents wouldn’t. Just be happy for ALL those achievements your child has gained. ALL children are different and what may seem like a small achievement for one person may actually be a massive achievement for someone else. Always be proud of those small steps and be positive and at the end of the day surely what we all truly want is all our children to be happy!

And I have to say this photo is THE BEST photo I have seen all year! I look at it and it makes me cry with happiness. For this photo shows me Holly at her happiest… at school. She loves it! And I know she is safe, happy and enjoying life! Yes ok she’s playing with bubbles. She’s not writing her name, solving mathematical equations or winning a race. But she is happy! Who wouldn’t want that for their child?

So be proud, be happy for all of your children’s achievements however small or different and be supportive of their decisions.

Changing decor!

So a little while ago we decided to decorate Hollys room. After all it was her sisters room and had dark blue worn out walls! We tried to ask Holly which colour she would like…

This is the best way we could think of and we guessed that orange was her choice. So this week whilst Holly was at overnight respite (because we don’t know how we would get it done otherwise!!) we had the decorators in.

The paint was purchased and we crossed everything we had made the right choice!! There was a sudden feeling of regret as I realised it was just a few days before the summer holidays but we went for it.

I really like it and when Holly got home we hoped she would too!

The verdict…. yes! we think she likes it. All afternoon she’s been shouting one of us from her bedroom so that we go up and have a look. Although just before she went to bed she did point at the wall and said “painting tomorrow!” Not sure what she means but hope she doesn’t think we are repainting it tomorrow!!! 😆😆😆

Next thing we need to do is change the flooring. We are going to have wooden flooring as it will be more hardwearing and easier to clean but ‘ One thing at a time!’ And this will be a big change for Holly.

Thanks to our local painter and decorator ‘Mi Julies’ for being so understanding, quick and efficient. https://www.facebook.com/Mi-Julies-painting-and-decorating-360553010641175/

The dreaded Summer Holidays

The school holidays are fast approaching! Yes I’m looking forward to the break from work but I know the school holidays are not going to be easy. And in my opinion six weeks is too long!

I am now sort of used to it. I will be taking one day at a time. And the gin is on order but as I am on diet (at least until a very special wedding we are going to anyway!) I may have to restrict the cakes this year!!

My biggest challenge is finding things for Holly to do that I can safely do on my own, things she is interested in and lots of them as Holly’s concentration is very short and limited. So I can see plenty of trips in the car, horse riding and activities at home. And that’s in between all the usual shredding and destruction! House becomes more of a tip than usual but we will survive!

One thing I can almost guarantee is – it won’t be boring and I’m sure it will be eventful as usual! Oh well it will give me something to write about! 🤣🤣 And I will forget things even more than usual (Sorry in advance!) because I don’t know know about anyone else but during the summer holidays I don’t even know what day it is! I am also trying a new strategy… I’m going to write everything down in a book – one day at a time!

This has not started as planned as Holly has already broken and scribbled in the book 🙈🙈🙈😆😆😆

Maybe this could be a joint project? Now that’s one idea! lol I’ll keep you updated!

On a serious note I know I’ll get through the summer because I have a few things to look forward to which helps and I know I’ll get a break – a wedding (as already mentioned and sooo excited!), a full family holiday and Holly is at respite so we will get a short restful holiday too.

Most importantly I am very lucky to have many fabulous friends and relatives who will keep checking in with me and will invite Jasmine to do things which is great as sometimes it’s the siblings of children with additional needs that miss out.

And I will be doing my usual coping mechanism finding humour or making things funny that aren’t! 😆😆😆 As I wrote about in a previous blog

https://mummy-jet.home.blog/2019/05/14/its-mental-health-awareness-week-but-do-you-have-a-coping-mechanism/

I’ll keep you all informed…

Sensory needs #2 the need to move

So Holly is very rarely still and even then she is not completely still. She has been known to sit for a short time but not for long!!

She likes to sit with her legs up and even then the legs are twitching or flapping or bouncing.

She even moves in her sleep! She seeks movement. She loves her trampoline – outside and inside! She loves to bounce! See previous post

Holly loves Trampolines

A couple of months ago the OT recommended trying a gym ball. We have had these previously but it became a battle to stop her pulling the stopper out with her teeth and letting it down! But it had been a while so we thought it was time to give it another go…

So far so good. Holly likes to roll on it on her front. She likes to sit and bounce on it especially if she can be nosey and look out of the window at the same time! She likes to sit and bounce and look at her “iPad”.

So as the gym ball was successful we thought we’d try another suggestion… the wobble cushion!

Oh well! We can’t expect everything to be a success. Holly still won’t sit on it but the dog loves throwing it around!!! 😆🤣😆🤣

Our once a year Barbecue!

So it was a lovely weekend. Maybe summer is finally here? (Or May be that was it!) Every year we think ‘Yes let’s have a barbecue’! And then every year we think ‘that’s it! Far too stressful! We’ve done our bit for the barbecuing this year!’ What should be a relaxed, fun, family eating experience turns into a stressful, anxiety filled nightmare for us.

First problem Holly has no sense of danger! Ermmmm … fire! 🔥 So from the moment she could walk this was not good. She would try to touch the barbecue, grab food from it and just never got the “Do t touch!it’s hot!” thing. So we used to put the barbecue on the front garden and one of us would stand out there and cook the food whilst the rest of us were in the back garden waiting for the food. Now bearing in mind that Holly is hypersensitive to smells this drove her mad- she could smell food but couldn’t have it! Luckily we also have some lovely, very understanding friends and neighbours!

Secondly Holly can not cope with the fact that we are eating outside and not at the kitchen table. This causes major anxiety! And she ends up wandering around the garden, in and out of the house, slamming doors or bouncing on the trampoline watching us eat and not eating herself! To be honest it’s rare if Holly sits down through out any meal – she is always getting up and down at the table! This has got better over the years and she will sit for short bursts of time. This was last years barbecue memory…

Holly has never coped with the buffet/help yourself style of eating. If there is food in the bowl on the table to share she thinks she can just eat it all! More anxiety!

However this year was a little bit more successful! We pre-warned Holly the day before that we were having a barbecue! So the next morning she kept going into the garden, pointing to the table and saying “dinner!” So she knew that we were eating outside. She pointed to the barbecue saying “barbecue!” The last few years the barbecue has advanced into the back garden!! Yay! It’s been there since last year! So she is used to it of course!! (Our excuse anyway! 🤣🤣) But we still have to keep a very close eye on her all the time. So as weather forecast was good… we went for it! Ok Holly decided to eat compost for starter! But she’s had worse!! 🙈

She did sit at the table and eat in between bouncing on the trampoline!

She did eat more than anyone else this year! – helping herself but she was much calmer! That could have something to do with the fact she helped herself to the Rescue Remedy Emergency Spray in my bag before we started eating!! 🙈 Or that Jasmine wasn’t there?? Therefore quieter? Who knows? It was definitely better than usual! So much so we may even have another barbecue this year!!! Woohoo 2 barbecues in one year?! Well if the weather stays nice that is! 😆😆

Sensory needs trial #1 Rescue Remedy

So we recently filled in a sensory assessment for Holly. We’ve done this before and we do know the things that Holly is hypersensitive to (smells, sounds) and things she is hypo-sensitive to (touch) but it’s good to be reminded! Some sensory issues are obvious some a bit more complex. Taste? She’s not a fussy eater. She likes most flavours. In fact she’ll eat or put anything in her mouth – shower gel, leaves, dog biscuits, sheep poo! – although she did put bird poo in her mouth the other day before we could stop her and she obviously didn’t like that!! 🙈 🙈🙈 So as I know she is not that fussy about how things taste I thought she wouldn’t mind this!

And anything that says it’s anti-stress or reduces anxiety then we will give it a go! It says it’s also safe for babies, children and animals. I even tried it! (Thought I’d better before giving it to Holly!)

As you can see Holly is very interested. Now it would have been a really good test if I’d done this half an hour earlier when Holly locked me in the garage!!! But that’s a different story!! So… it’s got a very slight warming taste? Doesn’t really taste of anything (to me anyway!) So Holly should be fine. I did feel calm for about a couple of hours afterwards but there were no major ‘incidents’! Need to try it when a disaster strikes!!

So I’ve tried it 3 times on Holly. First time she’d just had a meltdown and we were going horse riding. Holly struggles with any transitions from one thing to another especially to and from toilet and to the car. I sprayed it on one of her chewy necklaces and put it on.

The journey to horse riding was quiet and relaxed. And I have to say that the trek was the calmest we’ve ever had and considering Holly had a different person leading the horse to who she normally has- this was a big thing!! She was even happy on the journey home!

I tried it again when she was having a meltdown- I sprayed it on the same chewy necklace and then put it on her. Not sure if she recognised it and remembered the effect but she chewed it straight away. Now a meltdown can last up to 45 minutes – this one – 5 minutes and she was up and out of it. Now there could be many other factors at play here – dad and sister are away so the house is much quieter and less busy than usual , Holly has all my attention 1:1 and it’s not too hot or cold (weather). But it is raining so we haven’t been able to go out in the garden??

Verdict? Well… not sure. It doesn’t have a negative effect and it does seem to help? I’m going to continue trying it and maybe see what happens for the more extreme behaviour or stressful situations.

AND please note this is what happened for us – it may be completely different for someone else?

I’d say is it is TO BE CONTINUED…

Does the sounds we hear affect how we feel?

This has to be THE BEST de-stressing music – the evening bird chorus!

So relaxing and just what I needed this evening after a tough week … a lovely peaceful walk with the dog listening to the birds singing. Then further along, the sound of running water as we made our way back along the canal.

Although I have to say, for a moment it made me think that I may need to pee but that’s more likely to do with my age and the number of cups of tea I have drank this afternoon!! 😆😆😆

This afternoon… I had an appointment with the OT and we filled in a sensory questionnaire which even though we already know about her sensory needs it made me think about them again – reinforcement and changes etc. Holly is hypersensitive to sounds. She can hear a key in the lock on the front door from anywhere in the house! There are sounds that she hates – mostly unexpected sounds like fireworks or corks popping, and these make her extremely anxious! There are sounds she enjoys – music anything with a tune and this appears to make her happy most of the time. She likes listening to songs over and over again. We even use singing to calm her down we she’s getting anxious.

It made me wonder tonight what she actually thinks about the sounds she hears? Does everything sound loud? Can she hear things that we can’t? Not sure we will ever know? Does she like bird song? I love it. I don’t think it bothers Holly? Although I’m sure it wakes her up early some mornings!!! 😆😆😆

People Watching

Today has been a particularly difficult, bad day for several reasons, some I can’t go into. I’ve ranted, moaned and cried on people today. Luckily I have some really good friends! Then when I got home just after lunchtime I found that we had no electricity! Just another thing to add to the crap from today! But several phone calls, an electrician, several engineers and 5 hours later we have power! But it’s not fixed yet. The engineers will be returning tomorrow to dig up the road!! I can’t say that without thinking of ‘Mr Bull’ in Peppa Pig 🤣🤣🤣

It’s been a tough day but tonight this made me smile as I was reminded how much Holly loves people watching, especially other people working! 😆😆😆

Free entertainment which can sometimes keep Holly occupied for a short time (well longer than most other things!) Shes not fussy about who is working or where. She’s just nosey. 🙈🤣🤣🤣

I love a challenge- and it runs in the family!

I do love a challenge- but our latest problem was not a pleasant one! Holly started getting things out of the bin, including the dog 💩 bags!!! Really really disgusting and no amount of explaining why it was not a good idea seemed to work!! 🙈 So I set about the challenge!

BUT… Grandad beat me to it when he turned up with this contraption …

WHAT IS IT? No idea! Daren’t ask! But it works so I don’t care!

That’s one up for grandad … this could turn into a competition!! 😆😆😆

Update on a past challenge – the window blind issue – it’s still going strong! Here’s a link to the previous post.

https://mummy-jet.home.blog/2019/03/10/window-cover-project-update/

#Autism #learningdifficulties #ASD #parentingblog #challengingbehaviour

Verbal or non-verbal? Or can you be ’a bit verbal’?

So when I am talking about Holly to others I do describe her as ‘non-verbal’ but she can actually say some words.

Holly was a late talker. Just before her 2nd birthday the first word she said was “Bob”. But everything was “Bob”! She’d point to food or toys and just say “Bob”. If you asked her a question she would just say “Bob”! You get the idea… This is how she earned the nicknames ‘Holly-Bobs’ and ‘Bobbers’ 😆

Holly then started to say a few words although not very clear. We have found over the years that as Holly learned new words some words were lost and she has never said them again. But some words more relevant to her she has retained eg “daddy”, “grandad” (see next video) She only seems to retain so many words at a time about 30-40)

From an early age Holly could sing songs – she could sing the tunes even if the words weren’t always exact. Here she is about 6 singing along. Can you recognise the song?

Holly cannot pronounce certain letters eg if you ask her name she says “Hoggy Hoggy”. Some words are random eg football is “booboo” and music is “moona”?

So it is difficult to know what she is saying. Sometimes if you say “I don’t know what you mean?” to her she will say a different word eg when she’s says “Bin” it could be bin or it could be “Flynn” if she then adds “horse” we know it’s Flynn the horse. Sometimes she’ll take us to something, point or add an action eg if it’s food she will do the Makaton sign for ‘eat’.

Sometimes she surprises us by saying difficult words like “medication” but for years she has struggled to say “yes” and I’ve only heard her say it 3 times. She has picked up some phrases like “Go away!’ – from her sister- yep that’s sisterly love there!!! And she will say or sing “Happy birthday” if she sees any cards, presents or a cake! 😆😆😆

But it is difficult for people that don’t know her well. I understand her so do close family, friends and her teachers but to someone meeting her for the first time, a doctor or a shopkeeper for example they would probably struggle and so for this reason I would describe her as non-verbal. This doesn’t mean she doesn’t understand what you’re saying. Oh she understands most of what your saying – especially when you’re not actually talking to her!! 😆😆😆 Now whether she takes on board what you or say or does what you ask her to do all depends on if she wants to at that time!

We recently got an iPad with a communication app on – we’re working on it and I’m sure that will be a whole new blog post in the near future! 😆😆😆