Joined At The Hip

My husband published the newest edition of his blog this morning (http://wp.me/p1Pkq9-a0) and it contained my favourite ever song “The Ice is Getting Thinner” by Death Cab for Cutie. I had a listen to it when i woke up and it has left me feeling all sentimental, so forgive me if this week’s blog is a bit soppy!

Last week, we got Thurston’s school place offer. He has been offered a place at the school where he attends nursery which is exactly what I wanted. In fact, I didn’t put down any other options as I’m certain that he belongs there. The school is really helpful and understanding with Thurston’s needs, and more than that, they just seem to genuinely really like him and want him to be happy. Him being happy is all that matters to me. As happy as I am that he is going to the school we carefully chose for him, it has raised a few issues for me, not least of which how I’m going to get 3 children to 3 different schools and back every day, currently without the use of a car. If anyone has any ideas on this, please let me know because I am still puzzled!

Apart from the practicalities, the official-ness of Thurston’s imminent school days is very unsettling for me. I have packed 2 kids off to school before (including one who only turned 4 a week before he started), and honestly, it hasn’t affected me. I knew they would be fine and they were. I was confident that I had raised them to be polite, sweet little boys with no qualms about dobbing in any horrible brats who so much as give them a nasty look. So far, I have been proved right, they are proper little telltale, suck-up, teachers’ pets just as I had hoped. Now that Thurston is abandoning me, I’m starting to feel a bit weird about it.

I always assumed that when I shipped the 3rd baby off to school that I would start to feel broody for another baby, in fact I’m always about 25% broody. However, now that it’s here, that’s not how I feel at all. I’m not broody for another baby because it wouldn’t be Thurston. Thurston feels like he is an extension of me and a lot of the time I feel like I am the only person who understands what he is thinking and how he works. With my other children, I worked 22 hours a week and shared childcare with my husband, so I knew that they were happy and understood with a variety of other people. However, once Thurston was born, I ended up as a housewife/stay-at-home/full-time mum or whatever people call it these days! On top of this, Thurston obviously had a very high, constant need for care and attention, so I’ve always felt (probably overly) clingy to him. Because his lack of communication skills, it is hard for me to trust anyone with him for more than a couple of hours because they might not know that he prefers to watch YouTube in the reflection in the oven, or that he doesn’t want to play with his toy cars, he just wants to put them all back in their original packaging over and over again. Therefore, T & I have been joined at the hip for the last 3 years and 10 months. I know him inside out and despite having little in the way of speech, he is delightful company.

Since it was my birthday 2 days ago (I turned 29 NOT 30!), I’ve been having a think about the last few years and whether things happened for a reason. I’m not sure if I believe in fate, but in 2007, I lost a baby 12 weeks into pregnancy. Looking back on it now, losing the baby meant that I was given Thurston. I wouldn’t have had him if I hadn’t lost the other little one. In a weird way, I feel like I was meant to be his mum, because no one else could be. He is a complete and utter pain in the bum a lot of the time but he is also the funniest, most adorable, creative person I’ve ever met. I am probably ever-so-slightly biased, but Thurston Jonas is truly the most beautiful little boy I have ever seen. His eyelashes are so long that grown women are jealous of him, he looks effortlessly cool in whatever clothes I dress him in, and he has the shiniest golden hair. He is a dream! I might be being selfish, but I don’t want to share him for 6 hours a day, 5 days a week and I might just indulge in a little sulk about it!!!

When my older children come home from school, I am given the low-down on their days. They love to shower me with the gossip of which kids have been in trouble, who has got weird new shoes, what all the other kids got for Christmas. They also tell me everything that they’ve been up to that day (albeit after I have bribed them with custard creams). The hardest thing about the prospect of sending Thurston to school is the likelihood that I won’t know what he’s been up to. There will be 30 hours of every week where I won’t know what he has been doing because he won’t be able to fill me in. At the moment, we have a home contact book from nursery but I’m not sure if that will continue into reception year. Even if it does, I know it won’t contain the level of detail that I need to be happy!! Added to this is the uncertainty of having a child with special needs go to school. I’m hoping that by keeping him at the same place where he goes to nursery will mean that the children there will grow used to him and his peculiar ways and so hopefully he won’t take too much flack for it. The Statementing decision is also due next week, which is probably adding to my anxiety about the situation. I take comfort from the fact that Thurston is now incredibly assertive and if he is unhappy or not getting the level of attention he needs, I’ve no doubt that he will make his feelings known, even if it is by yelling or headbutting whoever’s nearest to him. He works with what he’s got!

Another side to my little buddy moving on, is what on earth am I going to do with myself? I have been at home for the last 4 years, going to speech therapy, physio, hospital appointments. I’ve spent my days teaching Thurston how to eat and say “hello” to people. I don’t know how to be normal. I suppose the ‘normal’ thing to do would be returning to work, but I need to find something that is more flexible than just being within school hours. If I have a job, I need to be able to leave at the drop of a hat, in case Thurston has a sudden temperature or has hit someone in the face with a cow-bell. I’m suddenly realising that being someone’s Carer as well as their parent means you never stop being on call. Hopefully, I will be able to find a couple of things that I can fit around being Thurston’s everything, perhaps working from home. Living in my little Thurston-bubble has meant I’ve forgotten how to be a normal woman. I definitely need to sort that out and even though it’s scary, I am a bit excited about being Hannah again, instead of “Thurston’s mum”!

Since I’m being nostalgic, here’s a few photos of me and my baby! Thanks for reading. Let me know how you all got on with the transition to school! Hanj x

The Element of Surprise

Happy Easter Sunday! My little Easter Egg developed a pretty nasty, oozy ear infection yesterday and is on antibiotics so we are home alone. Alex has taken Louis and Zeke to his parents house for a family Easter Egg Hunt. I don’t like missing out on stuff, but such is life, Thurston couldn’t help getting poorly and I don’t like to share vomit so we will stay at home and try to find the silver lining! Well…..Thurston is allergic to dairy and I’m on a diet so I guess staying away from the chocolate overload won’t do either of us any harm! Annoyingly, Alex appears to have taken my debit card with him so I can’t even occupy myself with a little treat from Urban Outfitters like I’d hoped, so I’ve taken control of the laptop instead!

We took Thurston to see the out of hours GP yesterday, he had been so so poorly during the day at home. His temperature was peaking at 39.9 and he was getting more and more lethargic and couldn’t keep any fluids down, so I knew he was going to need antibiotics. We waited around all day for the doctor to call us back and he gave us an appointment of 7.30pm because it was so busy up there. Of course this is no problem, but when we got there we were the only patients and there were 3 doctors! Before we left the house, Thurston had been very difficult to rouse and I was starting to be really quite worried about him. As soon as we were called in to see the doctor, he turned into a completely different child. We introduced him and obviously pointed out that he is Autistic and doesn’t have much speech, only it turns out that when Thurston is poorly or worried, you can’t shut him up! We’ve been to the out of hours doctor many times in the past and they are often fairly grumpy and who can blame them? Thurston had this guy in fits of laughter to the point that he couldn’t actually listen to his chest. There was no stopping him! “U ok doctor? is my ear doctor? u sad doctor? u like toy story doctor? i watch cars doctor. whatsa matter hanj? i go daddy car doctor. my name thurston doctor. bye doctor. have nice day doctor. see soon doctor!!”. He certainly knows how to lighten the mood. If it hadn’t been for the raging temperature and oozy ear, you wouldn’t have known there was anything wrong with him! Once we were home, he instantly became clingy and whingy again and is still not his normal self today. He often takes us by surprise and we never know what to expect from him anymore.

It feels as though Thurston has had a bit of a growth spurt this week not in his size, but in his confidence and risk-taking. He also looks different because he has had his hair cut short (thanks to me sitting with him, alex holding the iPod for him and a very talented and patient sister-in-law doing the hair cut in record, super-quick time). As well as this, he is now sleeping (as much as he does sleep) in a bed and sitting up at the table in his booster seat, so it seems very much as if our little boy has fully graduated to toddler, if a little late by the usual standards. After months of trying to get Thurston away from his baby cups, I spent a gift card that had come free with a catalogue on a Brother Max Trainer Cup. I had literally 0% hope that he would touch it other than to slap it off the table, but I filled it with water and left it out on the coffee table for him. I came back into the room to find him happily slurping away as if there had never been any problem with cups and the other 50 + toddler cups I had tried simply weren’t the ones he wanted. In the past, giving him a new cup would have been like trying to poison him. It completely breaks the trust between us and he thinks I am trying to trick him into drinking something new and will often not drink anything else I give him until the next day! You can imagine my surprise that he finished his entire drink of water, wiped his chin and said “thank you Hanj” as if it was the most normal thing in the world! (anyone who has children with low muscle tone or difficulty with traditional spouts on cups should take a look at brothermax.com, they have really different baby & toddler products to the normal ranges which are really innovative and easy to use).

Since it is the Easter holidays, we have been out and about this week. We had a trip to Canterbury and I spent some time with the boys whilst Alex shopped for my (hopefully many, many) birthday presents. Louis had a bit of birthday money leftover so he asked to go to Build a Bear. My kids go nuts for Build a Bear, they would have every outfit, lightsabre, wig, tent and buggy for their bears (Bear Lightyear and Woody the Cowbear) if they could afford it. Thurston on the other hand, is not a shop lover so I was ready to be speedy and get in and out with as little screaming and slapping the general public as I could get away with. Louis was having Woody the Cowbear stuffed to the fluffiness of his liking when it dawned on me that there wasn’t any screaming. I looked round to see Thurston completely hypnotised by the “stuff station”! This is a gigantic tombola which permanently tumbles fluffy bear-stuffing around, it was like he was in a trance. Louis and Zeke deliberated over their bears and settled on a Spiderman outfit, rollerskates and sofa-bed for their bears before printing off birth certificates and having the bear dressed. They managed all this without a peep from their little brother as he was in a cotton wool dream world! Build a Bear is one of those places that before I went there would have made me cringe with its sickly sweet customer service and OTT sentiment. In fact, I still found it hard to watch as the bear-stuffing executive was asking the kids to kiss the heart (that would be stuffed into the bear) so it was loved, rubbed it on their muscles so it was strong and close their eyes to make a wish, and I probably did roll my eyes and mumble ‘oh god’ whilst I watched them completely fall for this tripe! However, there is something almost relaxing about the place. All the kids that are in there are hyper and noisy, so you don’t feel as noticeable as in other shops. It is also one of the few places that encourages children to accept that everyone’s different. You can buy spectacles for your bear or even a wheelchair. Nonetheless, I’m hoping I don’t have to go back there for a good few months as it was all just a bit too lovey-dovey for me!! (I would have much rather spent that hour in H&M but the lift was broken!).

Somewhere I will be going back to sooner rather than later is Wagamamas! Whilst in Canterbury, we took the kids for lunch to Wagamamas as we had a voucher from Christmas that we still hadn’t spent. I’ve talked on here before about Thurston’s love of the mini Chicken Katsu so I knew I wouldn’t have any trouble getting him to eat but I was surprised at how he went about it. The minute the dish was placed in front of him, he picked up his chopsticks and started shovelling it in. Surprise! Thurston is a chopstick pro! Alex and I are regular chopstick eaters and Louis and Zeke can use the kiddie version without any problems, but Thurston skipped that whole step and went for the full on grown-up chopsticks. Alex and I just stared at him in disbelief, laughing while he devoured his whole Katsu and then moved onto our Ebi Katsu (breaded King Prawn) as he was still hungry. I didn’t even recognise him anymore. This is a child who was referred to Occupational Therapy again last week because he cannot use pencils and here he is chopsticking his way through lunch! There is nothing better than when Thurston surprises me, it feels like Christmas every time!

For Good Friday, we decided to spend the day in Margate doing traditional seasidey things. Lunch had to come first as Zeke’s tummy was starting to sound angry, so we took them to the Greedy Cow Deli in the old town. Alex and I had been there while the kids were at school a couple of weeks ago and noticed that they had kids burgers and nutella sarnies on the menu so knew we’d be fine for the older boys. Out of habit as a mum of a kid with allergies going somewhere new, I packed Thurston his own lunch of Organix crisps and marmite sandwich. We sat outside despite the fact it was pretty damn cold because we couldn’t get the buggy up the winding staircase and I started feeding Thurston his crisps. When our food arrived, he started to cry and shout so I gave him my iPhone assuming this was what he wanted. He wouldn’t stop crying and started reaching across the table shouting at us all. I was just about to give up and take him off for a walk so the others could eat in peace when he grabbed the doorstep sized chunk of toast and rapeseed oil from the side of my salad. He scoffed the lot, and the next piece. Then he ate half of Zeke’s beefburger. I was so surprised but I felt so guilty that it hadn’t even occurred to me that he might want his own plate of food like everyone else! Next time we go there, I will order him his own burger. I’m so proud that he is starting to do things with us as a family, and he is really becoming ‘one of the boys’ rather than ‘the boys and the baby’. It’s a lovely feeling.

After lunch, we went to the beach. Louis and Zeke went for a ride on the mini train and Thurston went for a long walk on the sand to walk off his greedy-guts lunch. Even though his feet were turning in and his left leg was going wonky from being so tired, that kid walked for at least 20 minutes, almost the entire length of the Margate sands. I was so impressed with him, I was even struggling to keep up. At the other end of the beach there was a big bouncy-castle type of maze/obstacle course. It was fairly empty so I couldn’t see any reason why all 3 boys shouldn’t have a go in it. So we took off Thurston’s shoes, picked him up, threw him in the bouncy house with the others and hoped for the best. We followed him alongside the house, watching through the mesh and the joy on his face was so adorable. He bounced and crawled and had a blast. The bouncy castle started to fill up and the boys’ time ran out. It soon became obvious that Thurston wasn’t interested in coming out. No amount of offers of iPhones or daddy’s car were helping. Alex had a word with the owner and I was nominated to head in and retrieve him. So with my shoes off and a benchful of parents staring at my arse, I crawled through the bouncy castle and fought my way back out with a happy boy under my arm. Thanks Thurston.

Another surprising thing happened this week. After telling our miserable key worker Marge (see Hiring & Firing entry) that we would only contact her if she was needed (which she hasn’t been), she came to our house this week to inform us that she is officially closing Thurston’s key working case file! How unexpected! I am so pleased we are now competely key worker free, interfering nosy busy-body free. What a relief! We can handle all of Thurston’s appointments and forms by ourselves so I am very happy that there is now no chance of her just turning up to the house or any of his appointments.

So much of our day to day lives are spent doing the same things over and over. Watching the same movies, playing with the same toys, singing the same songs. When Thurston does something new out of the blue and takes us by surprise, it is refreshing and exciting for everyone. When someone develops so slowly, it really gives you chance to enjoy all the little things that you otherwise might skim over or try to rush along. Any little thing Thurston does is a massive achievement to me because I know how much determination and bravery it takes for him to try something new. I hope he never stops taking me by surprise.

Thanks for reading and keeping me company!

Hanj x

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