Tuning Into Charlie

So I have been toying with writing a new blog post for a good few weeks but to be honest I have been too frustrated and I didn’t want to just rant as that wasn’t productive or nice to read! I tried to rationalise my thinking and focus on positive steps in our journey. Positive mindset does a lot to help. 

The problem is resourcing this need and finding somewhere that can. We have seen two schools we feel will be perfect for Charlie. But both have no places for year 7 children in September. Which is awful to hear but also does not mean that the search stops, that one Won’t come up or we settle for something ‘for now’, as we need a secure placement that won’t involve another move. So if it’s ‘for now’ our position is a firm, he can stay where he is ‘for now’ until an appropriate place comes up. 

So the LA has sent Charlies EHCP to all of the 6 schools we/they think may meet his needs. Most of these we/they already know can’t meet his needs but this is a legal part of the process to prove that his needs can/can’t be met. This is what keeps me awake(along with C’s insomnia!) …as I have seen some AMZING settings by ofsted standards (as well as my own ha!) BUT we don’t want his needs ‘just’ met. He should thrive, he should excel in any way he can! His need shouldn’t simply be met he should be allowed to flourish. He is no more/less important than any other child in the LA system, all children need a place to flourish. I make it my job to make sure the children in my care at work do, to enhance their strengths, this is an entitlement. He is entitled to it as are all families. He will get it. The representative from the LA has been told this and she knows me well from working with me so she gets me and knows  that we do not back down. ???‍♀️

As well as sending his plan to all of these schools his name has been added to the North East portal. Where schools from the North East look and see if they can meet his needs. This includes independent schools. This is a long and sometimes tedious journey that we are frustrated with, as we know some settings can meet his needs. But with a system of over full SEN schools something has to give… more provision for these children is needed, when you are in it you see this so badly. There is just not enough specialist care available for children like Charlie. What is worrying is that some if these SEN schools continue to take in children when they are over full already. As parents we know this is a safety issue for staff and children and again something has to give. But how and when?!

Can you see why the frustration arises?

So we are basically still in no mans land, waiting, jumping through LA hoops when I actually want to smash them up and make some progress! 

On a positive note we have such happy boys at the moment! Charlie and Jack are both so content. 

Charlie is settled at school for now and seems to be happier in his class. He’s off with a tummy bug today but that’s a blip!??‍♀️? He is also still in his self-injury phase he’s nipping himself a lot but he seems to like that a sensory feedback ?He is also engaging more with the things he wants/needs/likes and with our older dog too! which is amazing ??

Jack is wonderful and loving his street dance lessons. This is his thing, He talks about it lots and we watch the greatest dancer, discussing how much he wants to go on! This is all about him, his thing and his special time and we always encourage him with this.  He needs the focus to be on him  and what makes  him happy?not to worry about us and his brother. Which he has a tendency to do. He has an amazing teacher who just gets how quirky he is! As he totally has his funny ways and worries about everything ??‍♀️bless him! (cheers Cassie?) He is  buzzing as he got through another street exam at the weekend! We are super proud! He is such a caring and thoughtful child…he asked tonight if we have another school yet and why it’s so hard to find one? A question I just couldn’t really answer as I have no idea myself! 

The search continues! 

Thanks for reading the rant! ???‍♀️

Lots of love 

The Freeman’s x

So it’s been two months since the last blog post. Holland is still a lovely place to be, but it’s been a lot harder to deal with….(if you didn’t read the last post you will be wondering what the hell that means now! *welcome to Holland poem, a must read*.)

We would love to report that it has been a wonderful start to Autumn but it hasn’t at all, it has actually been a shit time. We are honest about our ‘journey’ and feel no need to sugar coat a tough time. Although at this point again it is more of a ‘fight’ than a ‘journey’. Maybe we are always in a fight and sometimes we just have a break in the match, or this could just be a big bump in the road on the ‘journey?’ (How philosophical does that sound this early in the morning?! Ha!) Depending on the mood of the day it could be seen as either. Either way we have the boxing gloves on again.

In the last post we mentioned how Charlie was having some issues at school. These continued over his first half term in school. This was frustrating for us as at home he had been so settled, happy and to be honest a total delight to be with. The picture at school was very different. He was aggressive (hate this word! as he is not outwardly aggressive, his frustration can lead to outbursts but anyone who knows him knows he is not an aggressive child). He has been non compliant in tasks, no progress has been made and it is taking 2+ members of staff to engage him. This has been a new issue for us and school. As the home and school behaviours have always correlated and we can always make a link/find a trigger for this. This time school were finding trigger points hard to decipher and with C not presenting this way at home we were at a loss.

Frustration set in with us as parents and we did lay blame at school. As we assumed it had to be an issue at their end as he was not displaying anything like this at home. Communication between us wasn’t great, which is pivotal as C cannot communicate anything. We have a daily book that wasn’t being used effectively and this made the frustration grow more. This wasn’t good for anyone especially Charlie.

We pressed reset and had a very productive meeting with school and a rep from the LA SEN team this week, where they fully understood our frustrations and they stated the current situation in school. This opened the lines of communication more and explained a lot regarding his behaviours. He is in a new classroom (first move in 3 years) with new children and a lot of new staff and he needs a higher level of support than he used to, as well as a full sensory diet as a curriculum.

Moving forward on to year 7 the school feel that they will find it difficult to provide this for C. They can manage him going forward but want him to thrive as do we all. So the next step, for him, is one we never thought we would have to make. We thought school was set until he was 18…but now we are on the hunt for a new placement to meet his needs fully. His school are fully supportive in helping us find the right place for him and we appreciate all they have done over the last 5 years including their honesty at this point.

So we now look for another setting. One which will help further fulfil his needs, and give him the skills to function in society at a supported level. Which isn’t an easy task, we first need to find a placement and then actually secure it. We battled to get C into the out of authority school he is currently in. So the LA representative was told in no uncertain terms that this would happen again when we found the place that could meet his needs. SEN school places are generally decided by a panel who has never met the child. They read the EHCP and reports from school, OT, speech etc but they do not know the children they read about. This is a ridiculous system that the LA advisor assured us ALWAYS puts the child first (I don’t know who laughed harder at this point, us or the school staff!). We don’t need to get into the politics of this but that comment is basically a load of crap. It all comes down to a budget, a panel wouldn’t be needed if it didn’t. A school could simply assess if a child was suitable for their setting and if they had a place, allow them to attend. Instead a panel, who knows nothing of this child decides this, obviously on the basis of money as all councils have a budget, which we get! Money does make the world go round, so this is the nature of the beast we must battle. Although we were assured this wasn’t a ‘fight’ or a ‘battle’ from the LA but anyone who has been through this knows it is. It’s a frustrating battle against a pretty broken system.

We are now making sure C has an up to date report from the educational psychologist, OT and speech. His EHCP (educational health care plan) has changed considerably in the last meeting in terms of his needs and the level of support he requires. Which is the issue, he needs 2:1 throughout the day, a lot of settings cannot provide this, so the hunt is now on!

Charlie is unaware that this is going on. Since half term and a shake up in his class he has been happy at school for the first time in 9 weeks. A long 9 weeks. He is still so happy at home and is a total delight to be around. We are biased, but he is an amazing, funny, amazingly happy boy. He is wonderfully content and settled at home, his air of innocence shines through and he is loving his music and us signing to him (no matter how out of tune!).

We as parents are weathering the storm a bit at the minute but we will get there. We are a bit windswept and battered but we could be battling much worse fights! We have happy, healthy children which is a blessing in itself.

We are exhausted, stressed and sleep deprived but we are the only voice he has and we will continue to fight (YES mrs Local authority lady ‘fight!’ as what else would you call it!?) This is what any parent does for their children. Fight for the best for them, to make them thrive and be happy.

Bring it on… ?please hand us the coffee/pillow to scream into/booze to get us through!

Thanks for reading.

Much love,

The ?Freeman clan xxxx

So Charlie and Jack went back to school last week, as did I! I saw so many lovely back to school posts of children starting school and the new year..,The children who are Charlie’s age really caught my eye. In main stream school he would be entering year 6, the last year in primary school, thinking of the next big step of secondary and beyond. In his SEN school he is based within an SLD (severe learning difficulties) class with 5 other children, mostly fully non verbal like him, and aged from 7-11. He has been in this class for 3 years as it is a totally sensory based curriculum. I kind of love the fact that he won’t have to sit SATs/GCSE’s and have that unnecessary stress put upon him. He’s my little free spirit! Charlie doesn’t write, he reluctantly picks up a pencil but tells you with his eyes that he’s not going to be playing along with this game. We assume he cannot read words, but he may do and simply may not be able to communicate this. He does notice signs and symbols and focusses heavily on these as well as picture communication cards (PECs) at school, mostly for food, his biggest love!

I never usually compare children at home with my boys or at work as children are all individuals and they all have their own unique ways of developing and progressing in their learning journey. Charlie knows no different from his world. I did however have a moment of wondering…what if things were different…I didn’t feel sad, angry or sorry for him..or us, it was just a moment of wondering what if…I have done this over the years and never usually said that I do it…but I do! And it is human nature to wonder about things surely!?

Autism has taken us on a unexpected journey, that 10 years ago, when I held my beautiful 8lb baby boy in my arms I could never have imagined the rollercoaster we would be going on. It has made us all laugh, cry and become frustrated with a system that you have to battle with constantly to get what your child needs. But Charlie without autism and SLD wouldn’t be Charlie. This is all we all know how to be. I read a beautiful poem when he was little called welcome to Holland it says it all really (see below) we may have been planning to go to Italy but now we are in Holland the windmills and tulips are stunning and we certainly aren’t mourning Italy…?

I have to say I was Dreading the school holidays ending (like a lot of teachers I guess!) but not only because my hols were ending, mainly because Charlie was quite settled and almost serene in some ways. Don’t get me wrong we still had meltdowns and some pretty big kick offs which just come as part of the course with his condition and ever developing hormones. He still hated sleep, but we didn’t have the forced routine on top of it.

We could generally go with what he needed that day. If he needed a quiet time at home with his trampoline we could do that, Or we could go out and run him all over so we could actually attempt a good nights sleep. Some days we had things planned with friends and I knew he just couldn’t cope at that point. It wouldn’t be fair on him, Jack, my sanity or anyone we were going to meet! And that’s ok, we have wonderful friends who just ‘get it’ when I say Charlie can’t do this today or we need to leave now. But I know if he was stressed around any of these people they are always on hand to help as they know us so well. So so thankful for the lovely friends in our lives. ?

Charlie has had a mixed start to the term, clashing with another child at school has caused nip and scratch injuries, he is still doing this to himself also. Charlie loves to make noise and the other boy doesn’t like this… hence it always ends in tears! So he can come home very stressed! To help Charlie chill out we knew what would answer was…after Charlie loved the hot tub on holiday so much we actually couldn’t resist Santa coming early and bringing him his own at home. Which as you can see he loves…

Here’s hoping he settles at school, and keeps enjoying the hot tub as much as this. His smiles brighten our day and seeing him and Jack happy is all we want! see Holland is just as wonderful as Italy?

Thanks for reading all!

The Freeman’s xxx

It has been a while since the last blog and We have had ups and downs with C. The main reason for no blog is because it was the end of term and it’s pretty mental at work (school) and Home just gripping on for dear life until summer hols! Also when he’s been in low mood or having troubles at school. A blog with all this can sound negative and woe to us, and we are not built that way…. crack on and get through it we try to think…Crying sometimes, but we do it! and we think negativity gets us nowhere in life so ??

So update!! C is always ready for a school holiday. He likes a rest and break from a routine. Which you may not think would be the case with a person with Autism, but I haven’t met anyone with autism that follows the script of ‘a set of characteristics’ that google holds. Also our journey evolves as we go so he may need more structure in the future as he grows.

Anyway we are a few weeks into the summer holidays now and we have had ups and downs. We have had a fair few meltdowns and violent outbursts and some really. really happy and settled times too.

Charlie has enjoyed having chilled mornings and being able to have constant access to outdoors while in our house. As well as his paddling pool when the weather allows it. As he gets older we notice how much more frustrated he gets that we don’t always understand what he wants. The worry of puberty just around the corner and how this will effect him is another point for discussion in meetings at the minute! It fills me with dread when I read about it! It does with Jack, let alone Charlie who will not have a clue what is going on with his mind and body! Inevitably equalling in outbursts and he’s only growing in size… another thing to lose sleep over! ???‍♀️

We have to think carefully about where we go on holiday, travelling, destination, accommodation and facilities and also who with. Many of our friends, even close friends, say how chilled C is and he is so lovely and he will be fine! And he may be some of the time, And they also say, why bother what others think. (We Don’t) BUT saying that…We can’t go to a resort in a hotel with Charlie we do have to think of his needs and others. He doesn’t like to share space with lots of people. Especially a pool. We generally don’t worry what others think. If they have an issue with our boy. It is just that, ‘their issue’ not his or ours. BUT we also know what C can’t cope with and what causes us, as as family, lots of stress. So why would we want to inflict that on Charlie and Jack and ourselves on a holiday?! We always make use of my mam and dads caravan in the Lakes, And then plan another trip wisely!

2 years ago we went to Portugal, Charlie’s first time on a plane since being a baby. To say we were anxious is an understatement! We made sure he had an autism pass for the airport and we boarded last. Making sure we had booked the back seats on the plane, as we knew he could get up there and my mam and dad could sit in front of us. So if he kicked he would be kicking them! (They are good eggs!) We went away as a family group with my brothers, mam, dad and sister in law. So we had an army if needed. He was ok on the flight, minus some loud noises. and the staff were lovely. We stayed in a villa which was the best option for us. We had our space, our pool, our rules. We have booked again for next year to go to Spain in a villa and hope it is just as successful. We only wish it could be as simple to plan a holiday/take a package deal away. When you have a disabled child this will never be the case though and that’s ok. That’s our Normal.

Back to this year…We are just at the end of a holiday away to Cheshire in a converted farmhouse. It has been lovely to be away from home and have family time. C has loved the fact the house is spacious and he can get away from us all if he wants! And the bonus is it has a hot tub!(Water obviously a winner as usual!) He has loved his time in the tub, as the picture above shows. So much he doesn’t want to come out of it even with warnings that it’s nearly time go get out and get a shower or even go eat, his other favourite pastime. We have had a pretty big meltdown in the tub. Resulting in his uncle and dad having to lift him out and his dad getting a pretty nasty bite to the chest in the process. Charlie can’t tell us when he’s not happy, upset or excited.. his actions can tell us. The bite told his dad!

Other than this, Charlie’s mood has been mostly settled whilst we have been away. He continues to chew constantly, causing mouth ulcers and pain for him and is still in his self harming nipping phase which is our current normality….

Charlie did become stressed as we entered Chester zoo this week. But taking into account the volume of people we were sort of asking for a meltdown. Once we moved him away from the crowds and into the fish/reptile centre he calmed a lot. This was darker/quieter/less bustling/ included water so was an overall winner! He was then ready to tackle the other sites of the zoo. He LOVED the bird centre as it includes a waterfall, He was very excited by this if he wasn’t holding on to one of us he would have climbed in and had a blast for sure!

Sleep is an issue with C again, in that, he doesn’t seem to like it at all. It may also be that the chemist gave us flavoured melatonin that contains salicylate, which in itself has the opposite effect the medicine is supposed to have on C! Maybe being back in his own bed tomorrow will help but I very much doubt it! ??‍♀️ We will battle this with them (AGAIN) when We get home ?but for now he is asleep on the last night of his hols and we are not far off it ourselves… goodnight all!

The Freeman’s xxxx

Look at this face?this lovely, happy and content face! Charlie has had a lovely summer half term break from school! We have heard his chuckles again. We love that he belly laughs like he did when he was a baby and toddler. It is the most wonderful sound that I wish I could listen to forever. The whole family, as well as our friends this week have all noted that ‘our Charlie is back.’ I almost feel like I shouldn’t even write this as I don’t want to jinx this calmness….He is also very happy in this picture above, as he is in the Ikea cafe. He’s not a fan of Swedish flat pack furniture but he is a fan of food! No matter where that is! It’s always his motivation!

He did also love to sit on the arrows on the floor of the store this week as he was amazed by the projection they make and how he could stop it with his hand. Some other customers did give looks at this point, most walked on with no judgement at all.. one group began nudging each other and a young lady (i use this term loosely) tutted at him and huffed and puffed as she moved her trolley around him. She soon looked away when she saw I was staring back with a less than friendly gaze, mammy bear took over…What can I say… sometimes I am not in the mood for staring…sometimes I think whatever… sometimes I comment… this time a look did the trick. but when Jack was hyper looking at EVERYTHING in the children’s section and I am trying to strategically move a 7 stone 10 year old off the floor and you tut at him/me then you are lucky you didn’t get a mouthful rather than a look of ‘tut again love and you will know about it eyes’ (yes my eyes can say that it’s a Gift I now have after years of practise) This didn’t ruin the trip at all though and we moved on to our next stop along with Jacks new items for his bedroom make over. So two happy boys ✅

We then went to the Alan Shearer Centre(not an ad or review we just LOVE This place!) I can’t rate enough. It is a free Charity run service for children with special needs and their families. We had booked time in the hydrotherapy pool as Charlie loves water so much. We also visited the music room that the boys loved. The Hydro pool was like a spa pool. It was amazing and Charlie and Jack had so much fun playing with all of the pools features, including a waterfall! Yes I am one impressed mammy! We will be going back again ASAP! Charlie enjoyed flapping in the water!! I spent a lot of the time blinded by choline ?but still amazing non the less!

Charlie also has his new trampoline in place in the garden now which he loves! He is so happy on a trampoline! He is still in his nipping phase and wants gloves on all the time as well as wearing a blanket in the house which he wraps around his hands in almost an effort to stop his nips… he wears this blanket in ALL weathers! And doesn’t seem to regulate how hot he feels. But we keep a close eye on him and it keeps him happy at the minute so we are going with it.

Another amazing moment this week was today. I am still BEAMING as I write this! Charlie gave me a high five! This may not seem a big deal. Believe me it is! He followed an instruction, not on his own agenda and understood ‘high five’. When he was a toddler he did this and then he lost the skill. He is now 10 and has found it again. I am not sad about this I am delighted. He is joining in a custom to reward himself and he enjoyed it (see video- obviously he has his gloves on too, standard) we really really value the small steps as they are not small at all they are HUGE!! MASSIVE! And AMAZING! They are what we look for daily and we see them and celebrate them. Yes it’s a high five, yes I am excited about it, why? Because it’s communication, it’s interaction and it’s progress! https://tuningintocharlie.com/wp-content/uploads/2019/06/img_5926.mov

I feel like we are in a half term bubble this week and hope he stays settled at school next week. But something wasn’t pleasing him there the last half term and we all couldn’t work out what it Was. He has 7 weeks left before the summer holidays. Here’s hoping they stay as positive as this week. Our happy chap is back and it is wonderful to see!

Much love, thanks for reading ??

Kate xxxx