Don't mess with a SEN mama.

I’ve always been against medicating Charlie, it was a personal decision and I thought it best, given some family history that prescription drugs was off the table. It’s a decision that I had stuck to until a few weeks ago. I have done every parenting course, attended every appointment, worked hard at fighting the right provision, engaged in all the therapies, promoted all the therapies and where are we? Still nowhere after all these years. Charlie still hasn’t progressed and other than speech development and language development I feel as though we are still where we were 5 years ago. Anxiety rules his life, and undermines everything I do. Maybe, medication will make a difference.

Here I was believing that I could just go to the GP and that would be it. Turns out, that was not it! A few weeks ago I made an appointment with a GP, she called me back as it was in the midst of lockdown 2.0, and the surgery was only doing telephone consultations. This is a blessing as Charlie does not cope well with any medical appointment at all. Said she would have to look into the case, and get back to me .

I waited a week until the 19th November, and rang the GP surgery back, went through the whole process once again explaining our difficulties and how I feel medication will benefit Charlie. The Doctor wanted to send me on a parenting course and point me in the direction of an autism website. Firstly, the course was the course with Action For Children that I completed in October, that stated they were a short term intervention and couldn’t help Charlie as he has more complex needs to what they can offer and needs long term support - I know!!! This is what I’m saying. And the website, was for ABA - Applied Behaviour Analysis, if you haven’t come across this before, it is a “treatment” from America. They use it a lot over there and believe it is successful. We completed a 10 week course - it didn’t work. Surprise, surprise.

Life then got a little busy, and we struggle on. I don’t hear anything at all from anywhere. Then last week around the 3rd December (it had been 14 days) I contacted the community paediatrician’s secretary to chase up. She emailed me back (lovely woman, always willing to support) saying that yes the GP had sent a referral off it has gone to SPOA, single point of access - where referrals for children go to, it has been accepted and a consultant will contact us shortly.

In the meantime I have been on Facebook and tried to figure out what this means and how long the waiting list is, how long are we looking to wait for this consultant? A bit of background, we last had referrals go to SPOA in 2017, back then after around 6 weeks it came back as school nurse could meet need - the issue was behaviour in and out of school, school exclusions (had no idea on any diagnosis, SEN, neurological pathway at this point) and school refusal, how on earth was the school nurse going to help?! I begged for another referral and the school raised an Early Help Assessment and we got a family support worker. This family support worker was trained in autism and immediately put us on the ASD pathway referral and SPOA accepted it. We then had to wait 12 months for our first appointment!! In that time, you can guess - Charlie was permanently excluded from Reception at the age of 5!!!

So….. when I hear the words “SPOA referral” I don’t leap for joy, I’m not relieved I know that there is probably a lengthy waiting list. So, after getting the information back from the community paeds, I ring back the Dr’s surgery again, this is Friday, the care coordinator informs me that once a referral goes off to SPOA then that’s it, they don’t get anymore updates. If it’s rejected or accepted I will get a letter and a copy would be sent to them. I will just have to wait - it’s been weeks. And to make matters worse I have been informed that the community paeds can not prescribe anxiety meds, the school even though they have a clinical psychologist can not prescribe anxiety meds and the GP can not prescribe, this leaves only one service that can - the Children and Adolescent Mental Health Service, or better known as CAMHS.

Roll on today and I get a text message asking to ring the GP surgery and speak to a DR. Ok, I ring, the Dr will ring me back, Charlie is horse riding today - I am hoping and praying that I don’t get that phone call while he’s on a horse. I get the phone call - the Dr, the same one I spoke to on the phone on the 12th November confirms to me everything I have already found out myself. Tells me nothing new, and here I am hoping that it was good news! So I ask her

“when did I first make the appointment” and she answers “12th November” so, a little shy of a month ago? yes, she replies. So I say : It’s not good enough though is it? “why not? we’ve sent the referral, like you’ve asked, it’s not been a month yet” … well actually I say “I raised these concerns with a paediatrician, back in April, but we were still signed off and had to wait 6 months to go on a parenting course, that didn’t work, so it’s been longer than a month” her reply “if you are not satisfied with the service you have received, you have to go back to the service, and make a complaint with them, not us. We have done as you have asked” me: “but how could I of known? how could I of possibly known that after discharge we would have to wait 6 months for any intervention, that intervention wouldn’t be right, that intervention wasn’t long enough? How would I of known?” her response: “ if you weren’t happy to be discharged then you should of requested not to be discharged, because we can’t go back to April and change it, now you are back on the referral list for SPOA” helpful! Real bloody helpful. I am not a medical expert and I could not of foreseen that we would end back in this situation 8 months later. So I replied with “But they should of known, and it shouldn’t of taken this long to get support, we have no support, no one is supporting us, I don’t think I have another 12 months in me to wait again for a referral” once again I was met by “make a complaint to the service”.

I find this shocking real shocking. That the possibility is we could very well have to wait another 12 months for another referral and somehow that is my fault? That I should of insisted not to be discharged, because of course I am a medical expert aren’t I.

Obviously the good Dr must of realised the error that this is not down to me, this is not my fault so I received the following text message “Further to our conversation, I will be writing to SPOA to expedite the referral, I trust this meets your approval” Well, no not really, back in April someone telling me we would have to wait 6 months for an intervention that wasn’t going to work and not to discharge would of been far better!!! And no mention of CAMHS so I can imagine I will flip if after all this we are referred to a service that can’t prescribe. But of course, I have found the email address for SPOA (they aren’t taking calls or voicemails) and I have already contacted them. Not quite sure if I want to lodge a complaint against the surgery yet. It is a battle I could do without.

Will update with more news when I can.

Georgina x

Tips for a SEN Christmas

Summary

  • It’s 1 day - stick to your everyday routines

  • Don’t overwhelm - spread out opening presents

  • Follow your child’s lead - don’t expect too much for them.

  • Be prepared - use everything you can to organise

  • Think sensory

Christmas is a terrible time of year for some little ones. When the world is busy, they don’t want to be! Here’s some tips for a positive Christmas

1) Keep calm its only Christmas - Having a calm settled experience over Christmas will benefit everyone in the family. It is only one day, is it really worth backtracking all that positive good work you have done developing routines and building confidence in your child to knock it back and set them back.

2) Think sensory - If there is more anxiety and the possibility of challenging behaviour and meltdowns then think sensory. There are new smells, brighter lights, busier places over the Christmas period. Think of the sensory impact on your child, try and figure out what may be causing sensory overload and remove it.

3) The overwhelm - Is it too overwhelming, everything is different, busy, there is more of everything at Christmas. It has been built up to be commercialised, bigger and better every year. But is bigger and better best for your family? Say no to extra family visits and shopping trips if it will overwhelm.

4) Less is more - For the last few years now I have realised that Christmas presents are rarely all opened on Christmas day, so why not space out the presents. If it’s going to be too much for your little one, then let them open a few on boxing day. Or New Year’s Day perhaps? Don’t overwhelm. I also go off a present list, once it’s done and ticked off that’s it, no more. Helps keep me in budget and stops the present pile being overwhelming.

5) Don’t wrap presents - We have stopped wrapping presents. The overwhelm, mess and anxiety was too much and at times ruined a perfectly good Christmas day. So one of the best ways to remove the anxiety is to no longer wrap our Christmas presents. We have these huge Santa sacks that I just put the children’s presents in. None of them mind, and it takes a huge weight off my shoulders not having to wrap everything.

6) Have a Christmas drawer - I have 2 at the moment and will probably have 3 from this week. Drawer one is in my bed, I have a divan bed and I clear out one of the drawers to stash the children’s presents in it. As I put more presents in, it reminds me how much I have bought them already. The next drawer is a drawer in the freezer, this is my Christmas dinner drawer, I start adding to this whenever I come across anything we will eat on Christmas day, I got pigs in blankets this week! Obviously not everything for Christmas dinner will go in there, but the freezer stuff can! The final drawer is the treat drawer, from now until Christmas I will pick up extra treats and pop them in the drawer so by Christmas we will have lots of goodies.

7) Christmas Dinner doesn’t have to be on Christmas Day - Probably one of the worst parts of being a single parent at Christmas is the burden you carry to do everything. I am on my own with no family to go to on Christmas Day, which means I have to balance, opening presents with cooking the dinner, building all the toys, playing with the children, all the cleaning and all the washing up!! So, to make things easier and so I don’t miss out on the kids opening and playing with presents I sometimes do the Christmas dinner on Christmas Eve or even Boxing Day!! Whatever works for our family. Sometimes it can be so overwhelming so I need to do whatever helps for our family.

Hope it helps!

Georgina x

24 Hour challenge. Build that bridge.

Over the weekend, Charlie wanted to do a 24 hour challenge. This child is obsessed with gaming and YouTube and ALL his favourite YouTubers do these 24 hour challenges. So, if you don’t know about them (count yourself lucky) but basically its when someone on YouTube, Facebook, TikTok or any other social media platform spends 24 hours doing one activity, like gaming, sleeping in a shopping centre, inside a cinema, in a den that sort of thing. As Charlie is a gamer, naturally he wanted to do gaming.

If you had said to me a year ago, or 2 years ago I would of flipped. That conversation would be cut dead and I would not of even entertain the idea. Charlie is too young, out of routine affects him massively. He isn’t mature enough to deal with the tiredness or the aggression that comes from being awake for long periods of time.

But, we hardly sleep anymore, it’s not unusual for Charlie not to settle until 11pm and quite often he’s up regularly throughout the night. So actually having a lack of sleep isn’t a major problem. And ALL the YouTubers are doing it and he just wants to be part of that world. He quite often feels disengaged from the world and society between autism, no schooling, no social group, no peers and sensory issues so why not?

I first heard the term “Build a bridge” a few months ago, and even though we have been on this journey for several years I had never heard the term before. It’s meaning is to build a bridge into your child’s world and connect with your child, build a positive interaction with them and hopefully your child with join you on that bridge and walk back with you. I’m not an expert, and we’ve never tried it before, I will be honest as I always am I find it hard to connect with Charlie for various reasons and none that are because of him but because situations and environments don’t allow us to.

So this weekend that is what I did! I built that bridge and went over to his world. We stayed up until 3.30am a staggering 21 and a half hours and we had lots of fun. I actually enjoyed it, even though I hate gaming and find his videos boring. And he really benefited from it. Today he has been positively lovely, telling all his online friends about his 24 hour challenge, in fact telling anyone that will listen and has gone to bed tonight on time, no fuss (probably exhausted) and straight to sleep!!! Within minutes, by 10pm an absolute miracle.

So I can actually say I think it worked! Giving Charlie this time, and allowing to do something he only dreamed of made it a reality, I built that bridge, walked over it and held Charlie’s hand on the way back over. Watching him sleep tonight - I always do, helps me refocus back on him when we’ve had a terrible day I felt such a strong connection. I couldn’t leave! Which is why I am writing this so late.

If you see the chance to build a bridge, walk over it!

Georgina x

Below is a link to another blog post on building a bridge.

https://www.nymetroparents.com/article/building-a-connection-with-your-child-with-autism

Thou shalt not have.

Back in October, with the new finalised version of the EHCP we were awarded 50 hours of respite…. a year!! Shocking I know, such a small amount for the level of needs Charlie has. Anyway, I had asked continuously since 2018 for respite and a social care assessment, it was extremely difficult to get one. Despite everyone that knew our family, knew I was a single mother, and dad was not active at the time, didn’t support any of the journey - he had been supportive, he had turned up for meetings, he had listened to advice and tried to work around schedules and he had engaged in some way with professionals. However, by 2018 he had stopped.

I have no parents, so the children don’t get that grandparent engagement, and my only sibling lives 70 miles away and we only see her in the school holidays. So the LA were fully aware of the difficulties I had with managing Charlie, not to mention I was responsible for 2 other children also. I would say that it qualified us for respite but it was always a no, I tried to self refer, no one got back to me. Being a parent carer to an under 18 year old is actually harder to get respite than if you were a parent carer of an adult child.

So I made sure when I took the EHCP to appeal in April that I went to National Trial, which was a pilot project that looked into the health and social care needs of the child. An EHCP stands for Education, Health Care Plan but funnily enough only the education part of the plan is enforceable by law. By going to appeal on the national trial meant that I could have the assessment as a carer under the EHCP. We were awarded 50 hours, however, that has not transpired, we are now 2 months in and I have not yet received a single hour.

Short breaks had contacted me to advise that there was an extremely long waiting list for referral and it might of been better for us to receive the funded hours from a different provider. I contacted a local ASD charity that has previously worked with us as a family and unfortunately they too are not taking on any referrals because of higher than normal waiting lists and I imagine a reduced capacity to see clients because of covid.

So the LA have given this wonderful funding albeit it’s a pitiful amount and has then not given the services the resources and funds to effectively carry it out - hence, thou shalt not have. Their suggestion is to get a personal assistant and then receive money through direct payments to fund this, “maybe I can use a family member” I honestly don’t know if they ever read notes! That would be impossible given the fact we don’t have a family member we could use, hence the fact I need respite! There is a few issues with this, obviously the main one would be introducing Charlie to someone new, he is autistic and has separation anxiety, he doesn’t do new people well. Who wants to work for 50 hours a year? And then there is the admin side of things, I would be responsible for that person’s tax, NI contributions and providing the LA with receipts and proof of this respite, that sounds like more than 50 hours of life admin to me.

However, when having a catch up with my family liaison officer today she has suggested that if I don’t have anyone in mind, then there is a TA that already supports children from the school in the holidays. This sounds perfect! This way Charlie will know, and have been introduced through the school to the TA, and the TA will be available and be thoroughly trained! To the standard that I need for them to be in order to take care of Charlie effectively. Great news, however, I’m still a bit miffed that it will be me doing all the work so this will need to be rectified.

Another bonus, is that after a few meetings Charlie is top of their priority list to get back into education so there is an new plan. This plan is to move him classrooms, less children and more 1:1 opportunities. So we will definitely give that a go. Charlie isn’t keen on changing classrooms but as I’ve said, he’s not attending! So it is unfair to keep his place in a classroom where he is not going and then another child can make use of that school place, and more children need inclusive education.

I will keep you posted.

Georgina x

We have visited the stables.

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If you have seen my social media posts you will know that today we visited Barleyfields stables as part of equine therapy for Charlie. There is other news, as Charlie’s family liaison officer came to the stables with his occupational therapist, however, because I want to keep Charlie’s equine therapy in a category and record progress, it is best that I write about that in another post.

Today, was pretty low key. It always is for the first visit, which is just an introductory visit to meet the horses and look round the stables. Charlie did amazing though! Was there for an hour! As I said, the family liaison officer came, the occupational therapist came and we met his riding instructor. I imagined Charlie being so overwhelmed but he wasn’t he was in his element and off he went! Because the stables are so big, it took us ages to walk around them.

After the initial meeting of the horses, Charlie got to walk a tiny Shetland pony up the road and back again, he loved the activity as he was able to lead the pony with her reins. And then it was time to meet his own pony. He now has a pony called Logic, a boy one, a chestnut pony. His responsibilities will include brushing his mane, cleaning his shoes and walking him. Once, he is more confident, he will learn to ride him. What struck me the most was how much Charlie was willing to get stuck in and get the work done! So much passion, I’m really looking forward to watching this relationship grow.

At first the occupational therapist will attend regularly, but eventually she will fade out and it will just be Charlie and the riding instructor. What is brilliant, is the fact that the riding instructor is also a TA at Charlie’s school so understands the stresses and anxieties that children like Charlie have and she will also be a familiar adult at school = bonus.

And, I will be sent to the car. Bliss!! It’s not that I don’t like horses, or want to see Charlie develop, but that 1 hour in the car will be so blissful, it will actually be the only hour I get off a week. I can’t wait, it will not only help with Charlie’s sensory needs but with his separation anxiety levels I can’t wait. This really is a win-win situation.

Georgina x

10 money saving ideas.

SUMMARY

  • Check your current benefit entitlement - Are you getting the right amount

  • What hidden benefits does your bank account have - get one that benefits you

  • Discount codes - Sign up for them, you’re buying that item anyway!

  • Utilities - Do a comparison, go cheap! save ££££

  • Record your spending habits - cancel your subscriptions

  • Meal plan - reduce waste, save money

  • Pay upfront - save more

  • Free tickets - always check websites and research where you are heading for good deal

  • Be frugal

As a single mama and a SEN mama, keeping as much money in my household is so important to me. We don’t know what the future holds, it’s very unpredictable. And as a SEN mother, the cost of raising a child with disabilities is higher than a child without. Scope did a research study and it had some alarming results, the average extra costs are £581 a month with 1 in 5 families facing £1000 price differences. You can read the article here:

Life costs more for disabled children and their families | Disability charity Scope UK

So I’ve come up with a few ways to lighten the load.

1) Benefits check - make sure you are receiving the right amount of benefits. This isn’t just for Disability Living Allowance (DLA) or Personal Independence Payment (PIP) if you are caring for anyone over 16. Disability premiums are paid in tax credit awards, universal credit, housing benefit and for some people on council tax support. Check with your local housing and benefits agency to see if you qualify. There are different premiums, for different awards.

2) Carer’s Allowance - If you, or someone else cares for someone for 35 hours or more a week, receives the middle or higher care component of DLA and earn less that £128 a week then you may be eligible for carer’s allowance. Carer’s allowance is a taxable income, but it also counts towards your National Insurance contributions, which is incredibly important for any pension income you may be eligible in later life. Carer's Allowance - GOV.UK (www.gov.uk)

3) Make your bank work for you - What bank are you with? Have you checked their benefits and rewards system? I get so many rewards with mine. I get a cashback for all my direct debits I’ve made £94 since April, and although it might not seem a lot when there is hundreds going out every month in direct debits, but it did buy some Christmas presents this year! I also have a range of other benefits which include phone insurance (handy if you’re rubbish with phones and have 2 teenagers). Travel insurance for me and the children, discounted travel benefits and good rates on travel money, UK car breakdown cover, a tastecard giving benefits for 2 for 1 dining or 50% off your bill on selected restaurants and cinema discounts. Martin Lewis from Money Saving Expert always has some great tips

Bank Accounts - MoneySavingExpert

4) Use online discounts - This should be a no brainer, however, how many times have you bought something online without checking for a discount? Download apps that do it for you. I use Honey which searches for codes and Quidco that gives you cashback and discounts on their partner brands. Don’t be afraid of a discount code, I can’t remember the last time I bought something full price. The discount codes doesn’t have to be online, if you can get them instore or through other advertisements then do it.

5) Utilities - Are they working for you? Are you on the lowest tariff? Have you done a comparison check? If the answer is no to any of them, then change. Why are you still paying for services that aren’t working for you and your family. Utility services aren’t loyal so you don’t have to be either. Turn your thermostat down, I turned ours down from 30degrees to 20 degrees, it’s now almost December and I’ve not had to switch up the thermostat yet, it works and it will cost me less in the future. Do you know all the benefits you can receive from your utility service? A few are listed below:

6) Understand your spending habits - check your bank statements, where is your money going? Have “no spend days”, days when you do not and can not spend money. Give yourself a challenge, choose a few days a month and stick to them. Become familiar with your spending, are there subscriptions you can save on? Have you signed up on a free 7 day trial and then forgotten about it? Set a reminder. If you want to cancel the free trial, don’t wait until day 7 cancel the trial straight away or the day after when it is fresh in your mind you will still get the 7 days but you won’t be charged if you forget. Do you have too many takeaways or meals out, find the deals. Find days where restaurants have special deals and use those as your meals out instead. Do you spend on your card? Set yourself a spending limit, take physical cash out and be mindful on how much you are spending.

7) Meal plans - The number one way to save money and reduce waste is to make a meal plan and stick to it. Not only is it great for your purse, but for your health too. Make a daily meal plan, write a list of the ingredients that you need for each meal and only buy those ingredients. Work out what you would have for snacks, and measure out your snacks, don’t impulse buy treats. Meal planning will also save food waste, that in turn helps the environment. Check what you have in your cupboards already. I used to go shopping and buy the same things every week, but then I would end up with 5 packs of 1kg pasta what a waste! See if you can already make a meal with the food you already have and then shop for your meals. If, like us you enjoy a takeaway count it into the weekly budget. You don’t have to feel guilty, we have dominoes on a Tuesday because they have a deal. Sometimes we’ll have a chippy tea on a Friday, that is Friday’s meal plan it’s counted in the budget. Choose when you go shopping, don’t just go on a Monday because it’s habit, go when you need to. And once you’ve been try not to go again, if you go on Monday, there might not be a reason other than habit to go on Friday. If it’s not important and you can manage, stick it out. If you are going on a Sunday to set yourself up for the week, make sure you count Sunday in your meal plans for the week, then you will always have extra.

8) Pay up front - When renewing any policy, whether it is an insurance policy or a subscription consider paying the fees up front, there is often a discount for paying the yearly figure. My home contents insurance last year was £72 if paid annually or £89 if paid monthly over the year! So with the prospect of saving £17 I choose to pay upfront. And I really do benefit from that extra £5 a month that I don’t have going out as a direct debit every month. Now, go back to step 5 do a comparison check, use a comparison website and check out the prices of annually and monthly costs you will find that the annual costs are lower. If you can, pay the annual cost and enjoy the financial freedom of less outgoings monthly. You will win overall.

9) Free carers tickets - Always check the websites for concession rates and free carer tickets wherever you go. In most cases you will need evidence of this, such as your benefit letter. But it is worth it, we have saved a fortune in trips out by using the discounted prices. But the best way to enjoy a free day out is to go on local trails, take a flask of hot drinks and a packed lunch and look online at some local nature trails or country parks. It’s free and other than parking charges you will be able to have a day out and better still exercise! If you’re paying for a gym membership and not using it, get rid! Not only are there free nature trails but you can pick some with hills and get that work out in.

10) Live frugally - Buy from charity shops, if the kids want new games to play with why not check out the local charity shop for any toys, games, books and dvds. I needed a small suitcase that would class as hand luggage on flights, I got one from a charity shop for £3. Fix your clothes, rather than throwing them out see if there’s any way you can mend them, even by changing jeans into shorts. If you are purchasing items online, pop it in your basket and don’t check out, if in a couple of days you still want it then buy the item if not delete the basket. Check Facebook or gumtree or freecycle for the item that you need first, maybe there’s a cheaper or better still free one online. Use the discount codes. And follow the previous 9 steps.

I hope this helps!

Georgina x

Self-care Sunday

If someone had said to me back in 2017, take some time for yourself, self care is important, you are important, I would of laughed in their face. There was no way 3 years ago I would be in a position to even have 5 minutes alone (as I write this, Charlie is about 3 metres away playing on the PlayStation). We’ve had some pretty tough years, but 2017 was particular difficult, Charlie was 3 months into a new mainstream school placement and either school refusing or being excluded on a daily basis. This was after he had been restrained, or removed from classrooms. What I didn’t know back then, other than the fact Charlie was more sensitive and harder to parent than my other 2 was that he actually had special educational needs and actually mainstream school would never be the correct place to educate him.

So 2017, after he was permanently excluded from Reception at the age of 5 and sent to a pupil referral unit, sent me into a deep depressive state. In these dark times, Charlie wouldn’t leave my side, he was so traumatised from school and the pupil referral unit could only admit him for 1 hour a day. I had to do everything I needed to in that one hour, and then he would come back in an even worse state. We lived off takeaways as I couldn’t even leave him to go and cook, the food shop was delivered online and god help any emergency because the thought of me leaving him caused a huge meltdown.

I signed off work sick, back then I was working part time for the NHS in a job I deeply enjoyed and had 8 years service, a work schedule that was easily managed for the children, plenty of time to balance work and life and a monthly pay cheque which was generous for part time hours. Not to mention £40 being deposited into a pension scheme that would look after me in later life. Charlie’s SEN came as a huge shock and something none of us were prepared for, unfortunately while I was off sick I developed appendicitis and had to have my appendix removed. A complicated surgery for me, as I had 3 previous emergency caesarean sections so it was more complex. Two days after being admitted to hospital and 1 day after surgery I discharged myself, there was no one to look after Charlie and I would struggle to rest if I was in hospital, I needed to be at home and begged for it. I also needed intravenous antibiotics but like the blood transfusion I should of had after Charlie was born I ignored it and went home anyway.

There’s no one to take care of my family, my home, my bills, my life admin or Charlie’s needs but me. I’m more than just a single mum flying solo with fleeting appearances of a father that just watches Charlie while I work (so I can continue to work) I am on my own, there’s no parents to pick up, and give me a break, no grandparents, and my only sibling lives 70 miles away in a different county. I’m all alone. Which is why I can never allow 2017 to happen again! I can’t work myself into the ground balancing all the balls, and risk dropping one, last time I dropped me, next time who knows what it might be.

So now I love self care. I practice it, I enjoy it. The hot tub this weekend was my treat to myself. Obviously the children have loved every second of it and it benefitted Charlie! But also, feeling weightless, calm and relaxed in that space meant that I have been able to take care of myself and actually feel so much better for it. Plus the benefits it gives Charlie means we’ve had a lovely weekend all around.

As we head into December next week, this is the toughest time of year for our little ones, and I will need all the self care I can get. Will be writing a post on surviving Christmas soon.

Georgina x

It's hot tub weekend

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This weekend we have hired a hot tub. Charlie loves the hot tub and the bubbles, he loves being in water full stop however, hates the thought of a bath. Which is strange. Dislikes getting in the bath but once he is in there, absolutely loves it! And will happily stay in for a few hours if I let him. In water, Charlie loves being under the water so I have to make a conscious effort to always remember goggles or there is trouble brewing. Goggles always make our trips so much better when we go swimming. And of course in the bath.

The hot tub is massive, fits 8-10 people, so even with just the 3 of us in it there is so much room!! It really does feel like a private swimming pool, Charlie can even do a few strokes across it. The benefits of hydrotherapy on a child with sensory issues are amazing which is why a hot tub does well in our household. I have included a link below.

Benefits of hydrotherapy for children with complex needs – Which School? for Special Needs (specialneedsguide.co.uk)

Unfortunately I don’t have the funds to run a hot tub all year round, along with the garden space and water and maintenance it would take for the upkeep. It is a shame, and hopefully one day we will be in a position to make this a reality because I know Charlie would massively benefit from it.

I booked this hot tub in June and then saved towards it until we received it, I knew it was coming and booked so I made sure we had the funds available. It comes with many extras, like disco lights which are very sensory friendly, and a bluetooth speaker so we can listen to our favourite songs. The guys are always on hand to help support, I even got a text message last night reminding me to put the cover on because it was freezing last night!!

Family fund also offer money towards hot tubs as part of their offer, this goes to show the benefits of having a hot tub. I have posted a link below.

Download.ashx (familyfund.org.uk)

We have the hot tub until Monday, but will probably drain it Sunday night. I can’t imagine we will use it on the Monday!!

Off to have some hot tub fun

Georgina x

Horse riding and OT.

So some great positive news for school, finally. We are now 3 weeks since Charlie last attended and we really need to do something to get him interested in school again. His Occupational Therapist rang earlier in the week to offer some horse riding therapy. There has been proven links between equine therapy and autism and the benefits that it gives. Below is a link to highlight some of the benefits:

8 benefits of equine therapy - Seriously Equestrian

I am really excited to see this happening. It is definitely a step forward for us and I want this placement to be successful for Charlie too. It will start with only half an hour to begin with, and the aim is to build on that. His OT will be there so that is how we will manage to get in his occupational therapy sessions and then hopefully we will find a way to get his speech and language therapy in too so with nothing else hopefully the therapies will be implemented into his days.

Another positive is the plan to get a buddy system for Charlie to help smooth the transition between me and school. Charlie struggles so much with separation anxiety and leaving me at any point causes him extreme distress and as you know, if a child is already in distress and traumatised then they are not ready to learn. A child is already starting from a negative place and that will not encourage any academic progress. The first session is due Tuesday! So I will let you know how it goes.

I have some more articles to write, one as an Instagram blog for a page that is encourages empowering autistic individuals and one for a podcast about surviving a lockdown Christmas for a child with special needs. My to-do list never gets smaller, life admin always prevails.

Georgina x

The calendar was short lived.

Unfortunately I have had to pull the plug on the community calendar. It was with a heavy heart I did this, but I started too late in the year and although I had managed to sign up an incredible 10 charities and organisations out of 12 it was still going to be too close to call for a 2021 calendar. I’ve been given some great advice on how to take it forward in 2021 to build a 2022 calendar so fingers crossed that will be more successful.

I want to put my name to something I am proud of, that has taken time and a collaborative effort. However, it all felt very rushed and it wasn’t making me feel good about a positive project for the community and raise money to go back into the very charities that have supported Charlie and myself for the past few years.

Hopefully the printer is still on board, as it was exceptionally kind of them to offer to do the art work for free, and I did a lot of shopping around and research into printing costs and they came up with the best value and quantity for money so I am hoping that the offer is still there for next year.

I have been overwhelmed with people’s generosity, giving me their advice for free and helping support this venture as I think a lot of people can see the benefits of the community calendar so I’m hoping that the same generous offers will be there once again. Of course it is really disappointing because I had investing so much time and energy into it over the passed 3 weeks, however, it has not gone unnoticed and I have added a lot more content to the website in the local area section on services that are in the local area of Derby and Derbyshire.

I have recently discovered Smile by Amazon, I am kicking myself as I did not previously know about it and I have spent a fair small fortune in Amazon in recent weeks due to Christmas presents. So I could of really made a difference with the donations, oh well I know now. Amazon Smile donates to a charity of your choice when you make purchases on Amazon, at least this way I can still donate and make a difference to local charities that have supported us by supporting them. I have added a link below.

smile.amazon.co.uk: You shop. Amazon gives.

So fingers crossed 2022 will be better and more successful, in the meantime I won’t give up my day job, finding car insurance renewals and cleaning out the fish tank!

Georgina x

The Community Calendar fundraising is live.

Good morning, I barely feel as though I’ve stopped! What started as an idea just 9 days ago has spiralled into something I’ve become so passionate about and really want to make this project a reality. The community calendar was an idea to pool lots of different information on local charities in one place. Charities specifically for the SEN and disabled community. A way of highlighting what there is in our community and how to receive the information, advice and support that a parent, carer, brother, sister or other needs. Some of the charities aren’t age specific so those of all ages are supported. Unfortunately the printing costs are pretty steep so I need to raise the funds for this.

I can’t tell you how busy it’s been filling out numerous application forms for funding, checking social media, filtering out people sending random messages on social media that is totally irrelevant to the cause (proposals for marriage and sending money abroad). Keeping up with the progress and emailing of the calendar and then having 3 children at home to run around after. It’s extremely exhausting but it’s definitely given me a new lease of life, a real project that I can throw myself and my talents into.

For now though, I really want to get the calendar off the crowd so I have set up a crowdfunder. The link is below:

https://www.crowdfunder.co.uk/community-calendar-for-sen-services

Please let me know if the link doesn’t work! And please if you can, donate and share. Myself, and the other charities and organisations in this project would really appreciate it.

Thanks all

Georgina x

Projects!

I don’t think I’ve been this excited in a long time! I had a nice long think about how I could help the SEN community in my area and what I could do from home and I came up with a plan. I’m so pleased. Having Charlie and the level of time he is at home, I’ve come to grips with the fact that he needs me at home and I can’t be physically present in a workplace, it is impossible. This may change, I hope it does but I have accepted it for now. So the project, it has meant getting in touch with local charities and SEN services to collaborate on the project together and fingers crossed it will all become clear on the 1st of December. That is the date I have given myself! Not sure if it’s over reaching or not yet!

To do this, has meant I have changed this website into a business one and created a business email too. It has taken up the majority of my Sunday. I have a meeting tomorrow with a financial advisor to find the best solution to be able to balance the finance side of things and a meeting with a printers. All done at home, which is a blessing. We are now on day 6 of not leaving the house, it’s a total regression and it is upsetting to feel this. I feel sad that we have regressed so much, just due to change and the feelings of trauma around it.

I have a webinar on controlling behaviour which was released by Yvonne Newbold of Newbold Hope and I’m looking forward to working with her in the future, Charlie struggles with controlling and challenging behaviour so hopefully I can get some worthwhile tips! Unfortunately, you are not able to buy the webinar after the post date however, it is a popular one and I’m sure it will be released again. I will pop a link to the site below.

https://yvonnenewbold.com/webinars-workshops-courses-and-books/

Next I will be registering Advocating For Charlie as a business, I don’t want to be a charity or a community interest as I believe the area that we are in has enough, and I don’t want to take away from already vital charities and services that already do amazing work and support so many families already. I have however, made a business plan of how much it will cost to run this website for a year and fingers crossed can generate the money to pay for this website so it will pay for itself and therefore it can continue to be a free resource for anyone that needs.

So lots going on and lots that keeps this mind of mine busy. All stuff I can do in the same room as Charlie as separation anxiety in controlling our lives right now. I really do need a break!

I’m also very excited for the future.

Georgina x

I will always advocate.

We started off badly, this week has been a total write-off if I’m honest. We’re a little out of sorts as my daughter is also off from school on a 2 week isolation period as someone in her class tested positive for Covid. So, she has been around this week which, again, has upset the balance of the house. As you may of seen Monday was particularly awful for Charlie, the sheer thought of leaving me and being separated to go into school left him with such distress that he ran off, and then assaulted a teacher. I was absolutely mortified. It’s been a good year I would say since he reacted that badly, and it really upset me to see how much he has regressed. Anxiety levels are at an all time high, and we are together 24/7. Charlie hasn’t seen his dad in 13 days, and isn’t likely to see him in the next 14 either unfortunately. All I can hope for is that there is a break at the end of the month, but only time will tell.

Unfortunately, me being furloughed means that there is literally no respite, I can do the food shop for an hour and that is the extent of my free time away from the house. Lockdown, has not helped, as where previously I could rely on a few friends that would pop in on us, which meant I would be less isolated but also Charlie would not have to leave the comfort of home. But lockdown prevents this, so no one comes in.

Next week will be even more isolating as my eldest son will be working away and my daughter will be back at school, so I will be totally isolated with only my phone for company. What a sad existence! But a reality to many of us that are in the SEN community, especially those with limited support and doubly those that are single parents with absent 2nd parents. Meditation I believe is helping, and hopefully I’ll fill out the gratitude tree every day next week to keep the spirits up, as I have no knowledge if or when Charlie will return. He should of gone back on Wednesday, however, refused. And today is another session but so far he is refusing.

The anxiety really does cripple him, and it has made me ponder along the lines of medication. Would it help? Is it something we can explore? I made an appointment with the GP, surprise surprise they can’t prescribe childhood medications. It has to go through the community paediatricians, of which we were discharged from in April. Unfortunately, it’s around 12-18 month waiting list for a referral to community paeds, so I’m really not sure where that leaves us. All I can say, is that this journey has been painstakingly long and stressful to access any support and any form of acknowledgement for Charlie’s needs. I wish I had a magic wand and I could make it all go away, I wish I was rich so nothing would be an issue and I could cocoon Charlie up until he was ready to face the world, but most of all I wish I could take all the anxieties and fear away so that he can lead the life he was meant to.

Still no news on respite, I believe we are on a waiting list, it’s been 3 weeks for one service and almost 6 weeks for the other, and still no news. At the next EHCP review I may look into direct payments to have a carer, but that of course will be another battle, and a possibly long drawn out communication and transition for Charlie and of course, it will neglect the fact that I fought for this because I wanted him to have access to the community and be ready to join in with his peers in social activities. We all just want our children to be inclusive, no matter what.

So just to summarise, I will need to advocate for medication now, advocate still for respite, advocate for the specialist provision because although I advocated for the placement, it still isn’t secure. We still have work to do. Advocate for changes to the EHCP. It will never stop, it will never be “done” I will always have to advocate for Charlie.

Georgina x

Short Breaks

As part of our appeal tribunal for Charlie’s EHCP and placement I opted to go down the National Trial route so that the court could make recommendations over health and social care provisions. I did this, because I did not feel like I was listened to when it came to social care and respite, help for community activities for Charlie. I have included a link for National Trial for info. Links work yay! I have included information from IPSEA which are an independent organisation.

https://www.ipsea.org.uk/FAQs/if-your-appeal-is-part-of-the-national-trial-what-difference-will-it-make-to-the-appeal-process

Because of the lack of recognition I had for services that included respite for me and access into the community for Charlie. I did this for a number of reasons, but mainly, because of his SEN needs he was excluded from all types of community activities such as football, beavers, dance, karate. My older children took part in those sorts of activities and I paid anything from £4 per session to £15 per term which really wasn’t that much. However, when I looked at these sorts of activities for Charlie I was met by extortionate rates! So, I was looking at £10/20 per hour, £100 per hour for the karate. Which is ridiculous. And pretty much excludes him out of everything as I simply can’t afford to pay those prices.

My aim when going to tribunal was to get allotted hours of funding for Charlie written into his EHCP which would guarantee me some time for him to do an activity out in the community with a qualified carer. Firstly, I needed a section 17 referral to social care. Understandably they assessed and closed the case as there were no safeguarding issues, but they did write in the report that Charlie was unable to access community activities and with the flight risk he needed 1:1 support. This is all we needed to take it further and have the recommendation built in, From the report, it went to the integrated disability service for the LA and from there went to panel and was accepted. It was a lot longer and more drawn out than needed if I’m honest.

https://childlawadvice.org.uk/information-pages/child-protection-referral-assessments-and-outcomes/

Anyway, it was accepted and I received a letter from the integrated disability team. There are no hours available and we are on a waiting list. Never mind, we’ve been waiting several years for any respite and community support. They did however, send me a list of local agencies that also accept the funded hours. Which I’ve popped the links below. Hurrah for clickable links!!

https://umbrella.uk.net/

https://www.crowwoodcic.org/

https://www.derbyquad.co.uk/whats-on/get-creative-families-and-young-people/q-club

http://www.stjamescentrederby.co.uk/fun-abili8y

https://www.jubilee.org.uk/smile/

Of course, with the current circumstances over covid 19 there are restrictions and undoubtedly we are on a waiting list again.

We have an EHCP review in January and if there is no progress then I will be moving forward to get either a personal budget or direct payments to pay for this service and employ someone.

There is a link below to personal budgets.

https://www.nhs.uk/conditions/social-care-and-support-guide/money-work-and-benefits/personal-budgets/

Now that these links are clickable I hope to do a lot more in the blogs. Eventually the dream is that I will have enough of a following on Instagram to give me clickable links on there, as I can freely share links on Facebook and there is a Linktree on Facebook too. Unfortunately I’m unable to do the same on Instagram, but checkout our Facebook as sometimes the content is different on there from Instagram.

https://www.facebook.com/Advocatingforcharlie/

Georgina x

Building Sound Minds

Back in April Charlie was discharged from the community paediatrician, he had his diagnosis and we weren’t under any medication so there was no reason not to discharge him from the service. I had concerns around Charlie’s anxiety levels and negative feelings and obtrusive thoughts. I’ve strongly been against medication for Charlie, as I don’t want to lose the boy he is and I really think medication will change him into someone that I don’t recognise and I didn’t want to do that.

So, the community paediatrician referred us to a local charity called Action For Children who run a project called Building Sound Minds. The project is aimed at short term intervention to give parents and carers the tools to change the mindset and perception of their children to assist them to build sound minds.

https://services.actionforchildren.org.uk/derbyshire/build-sound-minds/

I didn’t know if links worked in blogs so I guess we’re going to find out.

The project consisted of an assessment and then a referral to see which project would best suit the child’s needs as they have a number of interventions and can help in many ways. After Charlie’s referral it was decided that building sound minds would be best to suit his needs.

There were 4 weeks in the intervention with week 1 being about self esteem, week 2 anxiety and week 3 anger. These are all issues that Charlie struggles with in his emotions. All 3 are just as important as the other and I felt like we could benefit from this service. I will just point out that at the time, this is the only service that was referred to us, and came from the paediatrician recommendation as there was nothing else available.

Week 1 - Self esteem. After a short presentation and a discussion on how self esteem effects our children we were sent some activities to do with the children. This was a group with 4 other parents, the children were not present and was only 1 hour sessions long. The activities that we had for that first week were:

Draw each other - then write 2 positives about your parent/carer. Swap the pictures and write 2 positives about yourself. The aim of this is to reinforce positive affirmations. Show each other your pictures and why you wrote the positives. Build self belief.

Draw a frame - In this exercise, we had a blank piece of paper and we could design it how we wanted, colours, stickers, decorations anything really. The idea was to write something in every day for the next week so your child can celebrate little and big successes and of course boost their self esteem.

Week 2 - Anxiety. Every week was the same in regards to content. Introductions, how we got on with the activities, a short presentation and then a discussion. There were a lot more activities for this week.

Emotion Dice - We were sent a blank template of a dice and asked to write some emotions down on it. Emotions such as happiness, anger, jealousy, fear. When we rolled the dice, whatever emotion it landed on we could discuss a time when we felt that emotion or what that emotion meant to us.

Jar full of happiness - Use an empty jar, decorate it however you want and then use the jar to fill with happy thoughts. Although recognising your child’s worries are important (you can build a worry jar too) it is also important to recognise the positives and of course practice gratitude. This is a great way.

Body Map - using a big life size piece of paper, or a small piece of paper to draw a body. Your body. Then try to recognise where worry and anxiety affects your child physically. This could be in the stomach, pins and needles in the hands, sweaty palms, faster heart rate. Whatever it is for your child to recognise the signs and symptoms of feeling anxious.

4 square breathing - By using a piece of card, or a cereal box or even an amazon delivery box, anything square or rectangular. Use this to draw a shape, either a square or rectangle, use the outline of the shape to control the breathing. 1 line breathe in, next line breathe out and continue. This is practicing breathing mindfully which benefits the whole body when feeling overwhelmed, anxious, scared or stressed. Practice this daily as a rule and then move onto using it as a technique when your child becomes anxious.

Week 3 - Anger. Session as above.

Anger Iceberg - Get an iceberg picture from the internet, important that the under sea iceberg is bigger. Now you can discuss with your child what makes the anger that ripples underneath show on the surface. What are the triggers, what are the feelings.

Anger Thermometer - Again find a blank picture of a thermometer off the internet and label it from 0-10 and ask your child to describe the feelings and emotions that they experience. 0 might be calm and 10 might be explosive, it is all about your child’s individual reactions to the feelings they experience.

Body map - As with week 2. Do the same body map but this time with anger as the emotion rather than anxiety.

Anger first aid kit - You will need a small box, shoe box or basket. Use this box to fill with some sensory toys or distraction toys that you are able to access when your child starts to feel angry or upset. The box can be full of anything that they find will help support them, like fidget toys, squidgy toys or just doodling paper.

Week 4 - Consultation. On week 4 we were given a telephone consultation to see where the service may be able to support or close the referral. At this point it was recommended that Charlie needs more long term intervention, which I would hope he gets with school. A letter was written to both the referrer and the GP to involve them that he has accessed this service and we have accessed the intervention that they can deliver.

I know from experience it is incredibly hard to get access to services, support and early intervention and I feel it would of been life changing had Charlie got this early on. I hope that this blog post does manage to help support some parents and carers that are patiently waiting on waiting list for the help and the support for their children.

I enjoyed this, and it did what it was supposed to, armed me with the tools needed to best support my child when he reaches crisis. Something I was begging for for years.

Georgina x

Mindful meditation

I’ve been reading a lot about mindful meditation, and the benefits it has on your life, your mood and your ability to stay calm and how to react to stressful situations. It started well and I did it solidly for a week, every morning for 10 minutes. Ten minutes is the recommended allocated time that is needed to make a difference, there are guided meditation videos on YouTube, and it only takes 10 minutes and that time would of ordinarily been spent scrolling mindlessly on my phone anyway so why not?! Why not spend that time doing something that might potentially make a big difference in your life.

As I said, it started of well, but lately we’ve had a change of routine and with the change of routine comes the falling down of everything I had put in place before. Just a small change of routine sets a domino effect off in this house and it quickly tumbles into chaos! Sometimes that chaos can’t be unravelled and most of the time it just takes months and months to rebuild what we had before. It’s completely exhausting, feeling the need to be 10 steps in front of everything in order for this home and our lives to run as smoothly as it can and prevent the chaos being unravelled.

As it is, I haven’t meditated in about 3 days and I’m actually starting to miss it. I could do it at another time of the day, but that is also so difficult, because trying to factor activities into an already busy schedule can be overwhelming and that just makes me shy away from it and avoid it. And I can see then the way Charlie’s mind works and the way that he ends up avoiding certain tasks as they become overwhelming.

Mindful meditation has been heavily promoted lately, because of the benefits that it has on both adults and children and there are lots of children’s resources out there too. The hope was that if I can build it as a healthy habit for my life, then maybe that habit will build for Charlie and then he will benefit from it too. So what are the benefits? Well there is the calming techniques, being in the present, grounding, mental wellbeing, reduce stress, efficiency and better sleep (and we can all do with better sleep).

I have definitely felt and seen some benefits even though it was only for a short time. I felt calmer throughout the day, less anxiety and I noticed a change in my voice and my sleep habits too. So I will continue as those benefits are definitely worth it when I consider it’s only 10 minutes out my day, where I would of normally just been scrolling on social media anyway! Definitely worth the sacrifice.

Georgina

Training and personal development.

I’ve felt a bit lost after my degree had finished. The kids do definitely keep me busy but I feel a little underwhelmed that I am not doing something for myself. I am a volunteer and currently only do 2 hours a month with a local charity that supports women suffering from domestic abuse. I’ve been there for 5 years now and I’m really passionate about the women we support. With being a volunteer comes a perk with training. I’m very fortunate to have access to a lot of training, and I’ve done quite a bit in the last couple of weeks:

  • Graded care profile

  • Eating Disorders

  • Mental Health and Wellbeing

  • Covid 19 Psychological First Aid

  • Neuroscience and professional development

  • Self awareness and personal development

  • Resilience

  • Growth mindset

  • Dealing with stressful situations

I have just booked another course to do on proof reading and editing with the aim of hopefully being freelance and working from home. Because, actually I can not see any way forward at the moment than to work from home. Charlie’s needs are so unpredictable and he needs a level of security that means I can only raise him if I can be fully committed to his needs and that includes being able to drop everything so that I can go to school if needed, attend meetings and reviews, appointments and therapies and that is increasingly hard when you have a commitment to work and need to be present in an office or in a workplace where personal calls and time out is limited. I adore working and I really miss it, I currently only work on a Saturday when Charlie goes to his dad’s at the moment it’s enough and gives us the right work/life balance which means I can attend to Charlie and commit to his needs. However, moving forward one day a week is not sustainable so I’m hoping to get something that would mean I can work at home and around Charlie.

I had wanted to start an online shop so that this website could pay for itself. There are monthly fees for this website, I know there are other free websites but this one suited me, suited the vision I had for the website and suited the overall journey we are on. Maybe I can still manage to do that, or find another way through advertisement however, I didn’t really want to flood this with advertisements as it would take away the originality of this page.

It’s Sunday and I feel I’ve got lots of blogs to catch up on. I might start a new habit being #blogdaysunday. But with the way life is, nothing ever goes to plan. Like today, and yesterday and Friday we should of visited National Trust sites but we’ve not managed to get out on any of the days we had booked, which is frustrating but that is just the way our lives go sometimes.

Anyway, lots to do. Blogs don’t write themselves.

Georgina x

Lockdown 2.0

Where do I begin? What an absolute hellhole of a day! Honestly. Started badly and continued to get worse. Since coming back from half term, school has been insistent that Charlie takes his temperature every day before coming into the building, this is something he finds so triggering. And it is such a barrier to his learning . Today, he was meant to have an OT session, but because of a refusal to do his temperature, this meant he was unable to stay in school. Unfortunately, Charlie reacted really badly to this and lashed out, he became very distressed and I didn’t think he would be able to stay. However, it was decided he could still participate but only outside and we could all go on a walk.

The walk was good, fun, he interacted with the other 2 children and the staff and covertly joined in with some autumn nature learning. Best way to teach Charlie, is to do it so that he doesn’t know he is learning, as he has such an aversion to learning. We got really muddy and dirty. However, the OT said she was happy to start Charlie on horse riding and horse therapy, which he will do with one of his classmates. This was probably one of the only positives to happen. When it was time to go, Charlie didn’t want to, so got cross as he wanted to stay with his friends. I have found this week, that getting him there is full of anxiety and difficulty but actually when he gets there he enjoys it and wants to stay.

After we got home, I had a call from my daughter’s school, she is now on a 2 week isolation period because she has been in close contact with someone that has tested positive for covid. She is in isolation but none of us have to isolate, we can go about our daily lives! Not that there is much to do. Charlie doesn’t ever want to leave the house, his brother hasn’t been able to attend college for 4 weeks now and I am furloughed for the foreseeable! So I doubt any of us will be doing much anyway.

Then I had the news my sister’s dog was sick and needed an operation, what a rubbish time for that to come. Her dog has a condition that one of our dogs got and I know how scary that can be. This is concerning for her, and I really understand what she is going through with that.

Finally, when I was back from the food shop (that’s all I seem to do is multiple school runs and food shops) I had a call from Charlie’s school to advise that I was no longer able to stay on the premises when he was in school due to the tighter lockdown restrictions. So it looks like I’m back in the car park!! Not sure if I’m happy or sad, Charlie is definitely not happy, he now hates school and hates the government, and doesn’t want to go back! Always feels like half a step forward and a 100 steps back! Although we did have bonus sleep last night! Charlie got around 6 solid hours! Me however, I got up thinking that he was up and then couldn’t settle back down at around 2am. Unfortunately even with 6 hours sleep it doesn’t change things, days can still be just as unpredictable and just as stressful.

Oh and we have had to buy our own thermometer. It is the only way forward with this barrier, otherwise we will continue to have issues accessing school. We have a new timetable next week, not too sure how that’s going to plan out as I have another child to pick up from school. And that really does make it difficult when considering SEN children the fact you constantly have to break yourself in 3/4/5 pieces just to make sure you get enough of you around! Impossible.

Georgina x

October half term.

Following on from the last post and the difficulties of transitioning through holidays, I will catch up on what we did over half term. If you read one of my earlier posts, you will see I had something planned for every day. This is a rarity as normally Charlie doesn’t like to leave the house much, it’s very controlled and Charlie led when we do leave the house, and I like him to have a decompression days too. Decompression days are days where he can be at home and process the previous day/following days events, and are particularly helpful if you have an anxious child that has many sensory needs and melts down often due to sensory issues. We have had many many days/afternoons/evenings where we have had to abandon our plans or paid to get in and left 10 minutes later or been in a situation where my older children have had to jump in to make sure everyone is safe. We have definitely had some scary times.

So the previous plans were:

  • Sunday - Staunton Harold

  • Monday - Bluebells farm

  • Tuesday - Calke Abbey

  • Wednesday - Pumpkin Carving with friends

  • Thursday - MOT car.

  • Friday - Aunt and Cousins

  • Saturday - Halloween

  • Sunday - Birthdays

I did write this out yesterday, but I accidently deleted it! Nightmare. Anyway, other than Tuesday, which we didn’t get to Calke Abbey, our week planned out exactly as we wanted it to. Unfortunately, Calke Abbey is still only bookable tickets, and although we are members of the National Trust so it would of been free to go, I just couldn’t manage it. Getting Charlie up and out the house is sometimes just too much for one person, and sometimes it’s just not worth the battle. So instead we went to a garden centre called Garden King around 20 minutes drive away and we went on the pumpkin walk there and a little walk around the Christmas displays. Unfortunately, there wasn’t very many pumpkins so it is now on my list for next year to visit there for the start of pumpkin season.

Although it may look like we’ve had an idyllic stress free calm half term, don’t be fooled. Because of the trip to see Charlie’s aunt and cousins, we actually had such a rubbish night’s sleep on the Friday. This is because when days are like that, and very busy Charlie doesn’t always process it there and then and instead during the wind down time at bedtime he will process the day’s events. This means bedtimes can be absolutely manic. And then there was Halloween, which along with Charlie visiting his father for the day and the transition between 2 houses, I had decorated our house ready for Halloween which was a massive change for him even though he doesn’t cope well with change! But because we couldn’t go out for Halloween I wanted to bring Halloween to him, naturally Saturday night was his birthday eve, so he didn’t sleep all night! So that was 2 nights on the trot, then Sunday was his birthday which was super busy between present opening and going out for a meal and then knowing he was going back to school after 11 days off he didn’t sleep again!!! What a nightmare. I’ve had to really resist the habit of putting him into my bed to get some sleep, as I need to break it, or I just don’t get any respite. My bedroom has to be my safe space for me.

I will definitely do another blog post on sleep as it really is one of the toughest parts of our life. I’m due to do some eating disorders training soon, all knowledge is power.

Georgina x

Transitioning and processing school holidays and term times.

I’m a little late in writing this! After having such a hectic week. We’ve had a massively successful half term, which is surprising. All to often, trips and days out that we do fall apart very quickly, I’ve learnt over the last few years that the issues surrounding school holidays stems from the sensory issues that Charlie suffers from. These include places being busier than normal, living to a timetable which increases anxieties in me, such as opening times/ticket times and risking not getting there in time. I will come back to this. The transition between home and holiday and how it effects Charlie. This is of particular importance, and I never really understood it until recently, and since then between understanding and respecting transition times and process times, life has got easier.

None of this was ever explained to me. Not one person, whilst we were struggling, waiting for a diagnosis for the years Charlie was under the community paediatrician and the several school placements that he went to, ever explained the harshness of transitioning or processing. When you have neurotypical (NT) children, you take it for granted that they just get it, and can adapt and process situations at lightening speed. However, Charlie doesn’t and hasn’t been able to grasp that over the years. This means when I’m considering all the activities and days out we do, I always have to factor in his processing time and his transitioning times.

His processing time, is how long it takes him to fully understand what we are doing with our day. The things that help me the most, is giving Charlie plenty of time to receive the information, however not too long before we have to go. For example, it’s not advisable to tell Charlie on a Monday he is going swimming on Friday, because every day all I will get is constant asking and frustration around the fact he’s not going until Friday when he wants to go there and then. However, I can’t tell him the day it happens as then he hasn’t got any processing time and then ends up getting too overwhelmed and often can’t manage the activity which in turn makes him feel awful so it really is a no win situation. So that leaves me with around a 24-48 hour previous to any activities to prepare him. On top of just telling him what we are doing, I write it on our whiteboard in the living room. The whiteboard was a bargain £5 from Wilkos and is updated with all of the plans we have. We have a term time one and a school holiday one, this is because of course the school holidays look so different from term time. Pre-Covid, our term time was set up in a way that every week was the same, this was easier due to the school timetable at the PRU. Charlie was only in 9.30-12.30pm so we often had the week set up that we would do activities in the afternoon which were much quieter because the majority of other children were in school. So we used that time to do things like go to the trampoline parks, clip n climb (indoor rock climbing) drumming lessons, all these are done much calmer, quieter and less stressful without hoards of children around, and of course trips to the park. Then in the evenings I didn’t feel the need to take him out and mix with others and do those after school activities as they had already been done in the afternoon. It was a win for us. Like now, with Charlie only doing 1 hour at school 2-3 times a week it means that the afternoons are there to enjoy on activities in a much calmer space.

Transitioning - this is the time Charlie takes to fully settle in his environment. And can be vary variable depending on the environment. For example it takes roughly around 20 mins to half an hour to settle into the classroom, 2-3 hours to settle into bed, several hours sometimes a whole day to transition back to my house after he has been with his dad, or to his dad’s house. School holidays are no different, it takes Charlie time to settle out of the school routine and into holiday mode. So for us, it probably took Charlie until Monday, from Thursday to appreciate, understand and transition that he was on a school holiday. And vice versa, on the flip side, I told Charlie Saturday he as back to school Monday, several times again yesterday he was told. And then again this morning, and this morning I had a particularly bad morning trying to get him in after the break. And this is perfectly normal for Charlie, that first transition back, after a school holiday is normally the worst I get. And this morning was no different. However, it has been a productive morning. More to follow on that.

So to recap, the major difference between parenting children with SEN like Charlie and NT children is the time it takes for them to process and transition and this is key when establishing any different changes to environments or lifestyles such as holidays or activities. When these things are taken into consideration it massively helps lessen the impact on when a poor transition or rushed transition has on the child, and the behaviour of the child. Some top tips are:

  • Plan your day/visit/activity

  • Search it up on the internet first - get your child involved.

  • Make a social story

  • Ensure your child has processing time so they fully understand what’s expected of them (age appropriate)

  • Be mindful your child is transitioning, and by expecting too much from them might hinder their transition.

By doing these small changes, they may have a big effect on how your child manages their days.

Georgina x