World Autism Awareness bumper blog

Today is World Autism Awareness Day, and so “Daybreak” interviewed a famous author with a book out about her son with Asperger’s syndrome. I managed to get the children to stop singing “Man or a Muppet” long enough so I could hear what she was saying and I was so disappointed. She stated that all Special Needs children ‘must’ go to Special Needs schools or they will be bullied and never make any friends. She said that putting a Special Needs child into a mainstream school was like “giving a fish a bath”, it was so pointless. It’s very worrying, especially on World Autism Awareness Day that people will have watched “Daybreak” and assumed that this woman knows what she is talking about. She doesn’t. She knows as much as I do, which is everything about ‘her’ child, no one else’s. Autism Spectrum Disorder is just that, a spectrum. Therefore, there is a whole spectrum of ways parents can approach their child with Autism, with lots of different and often surprising results.

Don’t worry, that’s the serious part over! It is a very beautiful sunny Spring day and lots of people all over the world are hosting amazing fundraising events to raise money and awareness for World Autism Day. Last year, my good friend Clair took part in a Roller Marathon to raise money for the National Autistic Society because she is so lovely. Perhaps next year, I will arrange a fundraising event myself, but this year I have been a bit pre-occupied with family stuff and I thought I’d concentrate on this bumper blog edition to raise awareness.

So much has happened in the last 7 days, it’s hard to know where to start. It’s been one of those up & down weeks with good news and bad news in equal measure but the good has just about pipped the bad stuff!

Thurston is turning 4 in a couple of months but for several reasons was still sleeping in a cot. Firstly, it kept him contained which is fairly important to someone who cannot come down the stairs by themselves. Secondly, it kept him away from the other boys which is fairly important for someone who is known to whack people over the head while they sleep. Thirdly (and probably the least valid reason) is that we are lazy and scared and keeping him in his cot was the easiest option!! However, we live in a 2 bedroom house with 3 children who are 8, (almost) 6 and (almost) 4 so it had finally come to the point where we needed some more space and bunk beds for the older children seemed the most obvious solution. This meant upgrading Thurston to a proper bed and finally chucking out the 8 year old decrepid cot. We put a safety gate on their bedroom door and I still carried Thurston up to bed asleep so he didn’t actually have a clue anything was different until he woke up at 2am. He cried for me as usual, then got up and didn’t seem phased in the slightest. The next night, my middle son Zeke woke him up as soon as I put him down and he pressed the button on the lullaby musical book constantly for 10 minutes before I had to take him back downstairs to let the others get to sleep. He went back to bed fairly late and actually didn’t sleep too badly. So far, so good. In the morning, I woke up feeling like someone was staring at me. I get this feeling a lot and it is usually Zeke begging me for food as he wakes up so ravenous that he is often close to tears. I opened one eye and realised that Thurston was stood at the end of my bed grinning at me. Zeke had let him through the safety gate in his desperation for cereal. I didn’t want Thurston to make a run for the stairs because he still cannot descend stairs safely, so I had to talk to him the way people talk to suicide jumpers; very calmly while edging nearer to him! I finally grabbed him and pulled him into bed for a cuddle, then gave Zeke a safety talk! While we have been making the transition from cot to bed, Thurston has regressed a little bit which is to be expected I suppose, and is fighting sleep again, which means a sore face for me. Last night however, there was a definite turning point. Thurston started whinging in his bed at 1.45am. I went in to see him, fully expecting to get up with him but instead, I gave him his dummy and he rolled over, hit the lullaby button and went back to sleep. I probably would have fainted but the thud would have woken him up, so I tiptoed back to bed and miraculously, Thurston slept for a few more hours. I’ve never been so happy!!

When I bought the bunk beds at Ikea, I ended up buying a fair few other things at the same time, so it has been a week of flat-pack assembly and spring cleaning. A couple of days ago when I was sorting out the toy boxes, I bent my finger back and the nail bent with it and cut underneath my fingernail open. OUCH!!! I’m not just letting you know so that you can give me floods of sympathy (although that would be appreciated, I love a bit of sympathy, I’m a wuss!), but it made Thurston sympathetic towards me which was very very sweet. Thurston’s language is mostly Echolalic, which means he speaks in repetition of words and phrases he has heard from others, so the likelihood is he was just copying what my husband and other kids had been saying to me. I don’t care though, it was so adorable! It goes like this:

Me: “Thurston, mummy hurt finger”

T: “mummy hurt finger. oh no”

(i show him my finger)

T: “poor mummy. daddy! hannah hurt finger. it ok hannah” then he HUGS me!!! I love it. Now I realise the next part is self indulgent and silly but never mind. I painted my nails pink last week and they are inevitably now completely chipped and there is just a splodge of pink on one of the nails. Thurston has ignored the genuine cut under my fingernail and thinks that the splodge of nail varnish is the injury. I may or may not have painted a new splodge of nail varnish on that finger so that we can play “poor mummy” whenever I need a hug. There, I said it!! Anything for a cuddle with my gorgeous kid!!

The boys have just finished their Spring terms at school and nursery so we have been busy with Parent’s consultations. The older boys have done beautifully well, I am very proud of them. Louis was taken out by his teacher for a treat of cinema and lunch for doing so well and he is doing fantastically. Zeke’s headteacher rings us weekly to tell us he has had a special mention in assembly for his good work. However, his teacher thinks he may need a spot of Speech Therapy for his “th” sounds. At first she tried to blame me for my common accent (I can’t help it, I’m from Margate!) but she has decided to check with the SENCO to see if he might just need a little bit of help. Thurston’s Parent Consultation was a touch more manic because we took him with us, but that went well too, and with the help of his one-to-one helper, he is making progress which is very reassuring. He is even starting to interact with the other children which is really heartening to hear.

As welll as reports from nursery, we are currently swamped with copies of statementing reports from various Healthcare Professionals. The statementing process is well underway and he is up for review mid-April. This week he was observed by an Educational Psychologist whilst at nursery. His report arrived Saturday morning. It has everything you want from a Statementing report which sadly makes for pretty bleak reading as a mum. Statementing reports are understandably negative with good reason. A few weeks back, Thurston’s nursery funding was dropped by half because someone had written on a report that he was “happy”. Within one afternoon, he became so distressed that the funding was almost immediately reinstated, but you can see why the professionals refrain from saying anything complimentary. The report is very thorough and picks up on a couple of points that I’d forgotten to mention in my paperwork so I was pleased from that point of view. However, the report also includes results from a series of tests looking for Learning Difficulties. The results are in percentiles and so if your score is on the 20th percentile, it means that out of 100 children the same age, 80 children would be expected to score higher than your child. Here is the killer: Thurston scored on the 0.5th percentile. They wouldn’t expect anyone to score lower than him. That is a pretty grim thing to have to take in. Gutting actually. I sat on the sofa, showed him my splodge of nail polish to get a hug and stroked his long blonde hair and kissed him. Nothing else I could do about that really. Luckily, I spent the rest of the day watching my best friend Kate try on wedding dresses otherwise I might have wallowed all day. (Kate looked beautiful by the way xx)

As I said, it’s been a very busy week. As well as moving out of the cot, Thurston has also been evicted from his highchair. This was probably another result of laziness on our part but Alex has been unable to sit at a table during his back-attack and so Thurston has eaten all his meals in his highchair in front of the television. So, once I’d assembled the new Ikea table and chairs, I set up Thurston’s new Disney Cars booster seat and we now eat our meals together at the table like a respectable family! Thurston’s focus on his food has improved rather quickly and so I hope it will help me introduce some new foods to him. He also finished his latest Physiotherapy programme this week and has actually completed all of his targets. Clever boy! He managed to step over a block, do a little jump with both feet off the ground and kick over a tower of bricks. Most importantly, he has begun to properly run rather than a grannyish speed-walk. His little run is so enthusiastic and gorgeous to watch. It also has the added bonus of forcing me to do a little jog a few times a day which can only help me fit into the Maid of Honour dress for Kate’s wedding!

Thanks for reading and please share my blog as your good deed for World Autism Awareness Day

Hanj x

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10 thoughts on “World Autism Awareness bumper blog

  1. I saw that piece on Daybreak, I don’t have any first hand experience of young kids with autism, but even I thought she was talking a load of rubbish!! Another lovely blog 🙂 by the way, I’m rachels friend from working at the castle x

  2. I missed the Daybreak report – was busy working on my World Autism awareness day blog post! My son was in mainstream primary school, but there was no suitable secondary so we fought all last year to get him into a specialist school from Yr 7. We won, and the school is brilliant. But I don’t believe that all kids should go to special schools. Ideally we should all have the option to choose the school that is right for our children. Autistic or not!

    1. I completely agree Jacqui! I think every parent knows their child best and should get a choice of schools. Also, their needs may change and they may need different schools at different stages of their education. All autistic children have different needs and should be looked at as individuals. Thanks for reading x

  3. hey.
    found your blog via twitter.
    i think your blog is awesome. i work with people on the autistic spectrum and people just dont get what positive things can come from having a child with autism.
    i have let everyone i work with know about your blog
    hugs,
    holly zz

  4. A fantastic blog for world autism day hanj, you are doing thurston proud! I’m excited the wedding got a mention. Love you! Xx

  5. I didn’t see Daybreak but I totally agree with you, my son (6) who is high functioning ASD attends the same amazing mainstream as his ‘normal’ sister. Last year (in reception) they got him successfully out of nappies, this year in year 1 they’ve made such progress with his speech therapy.

    1. Wow brilliant news on the nappies, that is going to be a tough area for us I think!! So glad to hear your little boy is doing well, gives me hope x

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