So in recent days Alfies tics have stepped up a gear or three!!!! his finger tics accelerated , his arm rubbing and his flapping along with head jerking all did the same,along with throat clearing, toe curling and shaking his leg when he gets over anxious/excited. His finger tics created problems at school again with his writing so his lovely teaching assistant set him up with a net book to help him, the main issue is that, (bless him) he is trying so hard to concentrate on his work and all of the usual things he needs to think about like finger spaces, margins, spellings, punctuation but on top of that he is also having to suppress the urge to tic,at one point he told his TA that was too tired to do anymore work and she said she could just tell it was mental exhaustion, like his little body just couldn’t do anymore so he sat out the last part of the lesson with her, He has also had be taken out of class to have a good old stretch when he was ticcing so much that he couldn’t physically do any work, this makes me feel so sad as his mum that i can’t take it away from him, there is no cure for tourettes, noone knows what is going to happen next, noone knows what tics will develop or which ones will disappear, what i know is that i am incredibly proud of how he is coping, We have also introduced Paediasure into his diet to help boost his vitamin intake as i am getting increasingly concerned about his selective eating, thankfully he loves the chocolate flavour so he enjoys it and will have it happily with his breakfast and before he goes to bed, i have also just ordered him some more chewelery as once again he has demolished his glasses, i am now going to look around for some sort of reinforced frame so that he can’t keep ingesting them as it can’t be good for him! He has been assessed for his year 2 sats this term and i really hope that his tics haven’t interfered too much because he is such a bright little boy and it would be a shame if the marks didn’t reflect what everyone around him knows he is a capable of.
We are almost at the beginning of Tourettes awareness month and some of my lovely friends have agreed to help me raise some more money, last year we raised £400 for Tourettes action by wearing a onesie for the day which just happened to be the hottest day of the year…it wasn’t pleasant but soooo worth it to give that money to a fantastic cause.
Well that’s it for now, thanks always for reading xxx
i am so useless at this blogging business! my life has been so busy with work and the kiddies that it completely slips my mind! Alfie is halfway through year 2 now and for the moment is experiencing a very quiet period in the way of tics, they are only noticeable when he is stressed or excited like for instance when he is playing his x box he tends to kick his leg out a lot and his finger/shoulder tics all come to life as well but it doesn’t bother him at all, he is incredibly talented at playing games and has even talked about becoming a ‘game maker’ when he grows up 😀 his two uncles are very much into their games so he has good teachers! Education wise his behaviour is much more settled at school, myself and his teacher have decided to stop communicating through the home school diary purely because he is doing so well there is nothing to report other than that he has been having really good days at school, he is also enjoying the horse riding program that is run by the local council for the children who are under the senco at the school (special education needs coordinator) and he has taken to it like a duck to water, i was lucky enough to be allowed to go and watch him before christmas and i can honestly say i have never seen him so calm and relaxed, he wanted to try karate but his social anxiety stopped him from joining in and he won’t take part in large group activities at school or attend school discos which makes me feel sad, i want him to enjoy life and not be afraid to go to his school discos with his friends so to see him actively enjoying something independently is brilliant, i think it’s easy to take it for granted that your children will just ‘do’ things but for alfie it’s a struggle to participate in things that are unfamiliar or too crowded. He also no longer wears his ‘chewy tags’ (gumigem) anymore and although he is missing half of the top button on all of his school tshirts the chewing obsession is much better than it was, every morning without fail i have to make sure he has no lumps in his socks and make sure that the name label in his tshirt is flat so he can’t feel it (he doesnt have any tags in his uniform as he gets too agitated by them) so yes overall at the moment everything is well and we are all happy with how he i coping although the eating habits are very much the same! still a worry of mine! My youngest child corey is currently under speech and language and on the waiting list to see a pediatrician and a child development specialist due to some behaviours he has been presenting but as i am well aware these things take a while and what will be will be, i wouldn’t change any of my children, i love them all just the way they are, they are wonderful little humans and i am so so proud of each of them!
thanks for reading, Ells xx
It’s exactly one year tomorrow that we received Alfies official tourettes diagnosis and what a year it’s been! Although nothing changed in regards to the way we treated Alfie it definitely changed how i see him, i realised that for most of Alfie’s life he had been experiencing this thing and had just ‘got on’ with it, i am aware that he didn’t know any different but even today at the age of 6 he is well educated on his condition and yet it’s very rare that you will hear him complain about it, i know it affects him more than he can/will tell me but he really is a soldier, i know he feels self conscious and embarrassed, i KNOW this, who wouldn’t?! but i have watched him find ways to ‘disguise’ some of his tics and for that i am one bloody proud mama! As everyone knows i have never made a secret of his condition and i am always trying to make people aware of what it actually is compared to what people think it is, as i previously said we were warned that it may get worse as he gets older and he is experiencing a particularly ‘ticcy’ time at the moment, the dreaded finger tics have returned along with his arm/rib rubbing and the flapping but as ever he copes incredibly well, his vocal tics are a little more vocal but only if you know what you are listening for 🙂 His school life is good, apart from his difficulties concentrating which i think have made it hard for him to get going a couple of times he is off to a good start in year 2 🙂
thanks for reading 🙂 xxx
Hey, i have realised that i am hopeless at blogging! so i appologise for the lack of posts i do believe since the last time i posted Alfie has been discharged from CAMHS as they felt we had everything under control at home and at school and his visits to the clinic were becoming unnecessary but they will always see us again if we feel we need them 🙂 i can’t thank them enough for what they have done for my little boy, when the doctors wouldn’t take my concerns seriously i felt so deflated and talking to them really helped me to understand Alfies condition and to realise that everything i was/had been /am feeling are all normal and just part of the process.
It’s the summer holidays so i am enjoying having all three of my children together for some quality time, plus my daughter will be starting reception in september so i will be sad to lose the afternoons i have with her from now on, Alfies tics are relatively quiet,no more throwing thankfully!! his shoulder shrug is still here,there is a slight variation on his arm flapping, he now rubs his arms against his ribcage, he still says ‘c’ occasionally but i haven’t heard his throat clearing tic for a little while, another of his everyday tics is he grabs the neckline of his tshirt and pulls it across his body diagonally, and he is still chewing everything! i bought him some new necklaces from a company called chewellery and that helps a lot, it is textured so i was a bit worried he wouldn’t like it with his sensory issues but thankfully it was fine and i also got him some fiddle toys for when he was sat on the carpet at school as he finds it difficult to concentrate and they found giving him blu-tac helped BUT they found him chewing it so that solution didn’t last long! he also has yet another pair of glasses since he cannot resist chewing (and digesting) the plastic arms of his glasses! never a dull moment 😉 however his sensory issues are very much present, he is still only eating peas,pasta and yorkshire puddings and for a short while was very obsessed with only having 10 pieces of pasta and 6 peas which worried me a lot, i still don’t feel that what he eats is anywhere near enough but i hold on to the hope that one day soon he will decide to try something new, i think a lot of people who have never experienced the sorts of things we deal with will probably think i am doing the wrong thing and ‘pandering’ to him, but you really need to be present at meal times in our house to see that Alfie really does have a physical/mental aversion to certain types of food and smells , particularily yoghurt, if his sister has one and is sat near him he gets distressed, it makes him cry and he gets aggitated, as a parent it’s a wierd concoction of emotions to watch your child react to food in ways that i don’t understand, i feel frustrated, upset, worried and at the same time fascinated by it all, i just looked over at him and he is currently chewing on a plastic toy….yet if i gave him a cheese sandwhich it would upset him. it’s very strange to me, yet all very normal…does that make any sense!?
we still have Indie the ‘puppy’ he is 8 months old now and a fairly decent size!! the kids get on well with him, he has become my youngest child, coreys very best friend which is lovely to see 🙂 Oh and last month me and my best friend in the whole world Niki dressed in our onesies for a whole day (i’m pretty sure it was one of the hottest days we had) for the school runs, shopping and even sports day to raise some money for Tourettes action UK and we were shocked and amazed to raise £400 so now we just need to figure out what to do next and how to make even more money 🙂
well i think that’s all for now, thanks for reading 🙂
Quite a while since i have updated the blog, been very busy at home with the newest member of the family, Indie our 11 week old Husky puppy 🙂 we got him as a welcome addition to help alfie with his communication and anxiety difficulties and also our youngest child Corey doesn’t really talk very much yet he seems to respond well to animals 🙂 our very own doctor Doolittle 😉 …and it appears to be working 😀
Today was the final stage of Alfie’s umbrella pathway assessment, it was basically a summary of all of our meetings/questionnaires/assessments and there were no surprises, he isn’t on the autistic spectrum but he has social anxiety, obsessive behaviours and sensory difficulties (seeking and avoidance) the plan being just to continue as we are, working around him, finding things to help him, as all of his difficulties stem from his Tourettes syndrome and as everyone knows there is no magic fix for that.
….not feeling too good myself today, nasty germs so i’m cutting it short but thanks for reading and i will update again when i’m feeling better 🙂 xxx
So last week Alfie had an appointment with his pediatrician who is still concerned he has a social communication disorder and some sort of sensory disorder, possibly sensory seeking, so they are having a diagnostics meeting to discuss his symptoms and to figure out if he has enough to be given another diagnosis along side his Tourettes. They are all so lovely and supportive it sometimes feels like a counselling session for me! however it doesn’t come naturally to discuss my child,the good the bad and the ugly with someone i don’t know and it’s even harder to know that a room full of strangers are discussing him without me! so the next step is to wait for our next appointment where they will diagnose anything specific and move on from there. The main concern for me is his eating habits, he currently will eat 10 pieces of plain pasta and 6 peas…..it’s kind of like a ritual to him, so i have been working with him to stretch the number out a bit more……he loves fruit so usually after dinner he will have a banana or an apple or his favourite treat at the moment is the gooey cookies with chocolate inside.For breakfast he has ‘8 squares of toast with a litte bit of butter’ and a coco pops cereal bar which he will eat in a specific way, he has bread and butter, apple,grapes/strawberries, mini cookies and a kitkat everyday for his lunch at school, the smell of yogurt makes him feel sick and he hates having food on his hands. it can be testing!!!! most of his ‘meltdowns’ over the years have been food related and it’s not something that just happened overnight, he was breastfed until he was 15 months old purely because he hated bottles and any other kind of milk, so it was suggested that i carry on feeding him so that he was still getting the nutrition, but i was pregnant with his little sister as well and it was taking its toll on me physically, and at that point the health visitors were all adamant it was a phase he would grow out of so i weaned him off breast milk, but nothing changed. he still wouldn’t have milk in any form.
Alfie has recently had another development in the way of tics, his arm flapping one has calmed considerably and now he uses only one arm most of the time when he does it, but it has been replaced by an eye blinking and stretching tic, but it doesn’t bother or effect him in any way. more recently there have been some concerns from his teacher about him ‘impulsively throwing things’ namely, his glasses (which he has chewed the arm off again for the second time) his lunchbox and the whiteboard pen, he is described as looking ‘shocked’ when it happens, i won’t lie this particular one has me feeling quite sad, as up until now his tics appear to be more compulsive but now it seems we have his first ‘involuntary’ movement. i asked him about it and he just replied ‘i don’t know what happened’ and it broke my heart a little bit. It’s hard to see your child going through something that you can’t understand. And with no way of making it better. i can but try!!! I received a letter from Camhs a couple of weeks ago that reassured me i was doing everything i could to make his life easier, They want to use some of my ‘solutions’ as tips for other parents with similar issues and the doctor commented that she thought i was a remarkable mum and how she could tell myself and Alfie had a close relationship, which we do, i’m incredibly close to all three of my children, i’m lucky enough to work from home so i am able to be a stay at home mum which is a blessing, i’m sat here now being covered in cars and trucks by my 18 month old, best go play brum brums!!!
Thanks for reading 🙂 and i will update again soon xxxx
So as presumed Alfie’s tics increased during the run up to christmas with one of his old tics making an appearance (arm flapping) one of his more obvious ones it’s hard to miss, even to the ‘untrained’ eye. it’s human nature to have a look at something unusual or different and its also human nature for me to be protective of my children so unsurprisingly when i have caught people looking it gives me a mixture of feelings, i am incredibly proud of my son and nothing he will ever do will change that, but sometimes when we are out and about and more often than not its adults that stare at him, i kinda wish they would just ask me, but when they catch my eye i can tell they are embarrassed for being caught staring at my child! Alfie is blissfully unaware of people looking at him and that is a blessing because i never want him to feel ‘different’ as such. i can only hope in the future should he come across any negativiy towards his condition that i will have built his confidence high enough so that he will always be above it. my main aim as previously stated is to raise awareness and part of that would be me sharing some videos i have of alfie’s tics so that people fully understand what it entails, i may link the web gallery i have of some of his videos so you guys can see what a struggle he faces at times with every day tasks.
Before Christmas alfie was ‘star of the week’ in his class at school for improving his hand writing and remembering ‘finger spaces’ as i mentioned before he used to struggle to write when his finger tics were bad so i am chuffed to bits for him, during a conversation before the christmas break he told me he ‘tries to do finger spaces but sometimes he needs to tic his fingers and then he forgets to put his finger back in the space’ which was quite sad to hear but clearly it didn’t stop him 😀
On another note i recieved a letter today, Alfie has been discharged from CAMHS and the doctor involved said some lovely things about my relationship with Alfie and my skils as a parent which is a breath of fresh air! 🙂 I try my best in sometimes challenging situations but i am still learning, Alfie is almost 6 now and he is such a beautiful soul, he is intelligent and has a wicked memory, which may i add he got from his mama 😉
I hope you all had a lovely christmas and new year ❤