Incredible Summer Boot Camp

Summer holidays are often a time when we focus on our children. This summer we have reserved one hour a week to focus on parents and carers. In a small group of 6, we are offering Incredible Boot Camp throughout the school holidays.

Sim Jemmett Personal Training will be helping you spend a little bit of time focussing on your own fitness, whether you are a regular to fitness or like me an exercise dodger. Starting on Wednesday 5th August the sessions cost £5 per person per week.

When: Wednesdays 6pm-7pm Wednesday 5th August 2020-2nd September 2020
Where: Little Stoke Park
Who: parents and carers.

Reserve your place




Autism: Whose fault is it anyway? Blame does not help the parents. 10 tips for parents going through the SEND diagnosis process.

A guest post written for us by one of our parents.

Ten years ago as we entered the Sure Start Centre where our first parenting course took place, I remember the feeling of “Why are we here?” as though it was yesterday. Whilst the well-meaning health visitors watched us playing with our first child, the overwhelming feelings of being patronised, judged and let down as first-time parents started us on our long journey towards an autism diagnosis.

Far too often I hear of parents being blamed by professionals in the system and each time it brings back memories of endless conversations in blank NHS meeting rooms with those awful vertical blinds and blue chairs. My child froze in those rooms as much as we felt like doing. 

There are many amazing professionals out there who take the time to understand and support children and young people and to you, we say thank you! But there are sadly times when families are blamed and if that is you then this article is for you to feel encouraged and understood.

If I could go back ten years, these are the things I would tell myself. I doubt I would have listened though as I was so worn down and life was so very, very difficult. I’m sure friends told me these things but I wasn’t in a place to take it in. Zero sleep. Zero support. Zero breaks. That makes for one very tired and broken mama.

Yes, there are bad parents out there, but the chances are if you are reading this then you aren’t one of them – because you care about your child enough to find out how to support them best.

These are my top tips for coping when you feel like you are being blamed as a parent. Pick the ones that feel right for your family. It’s your family and you get to choose what works for you.

1.     Be patient

When you are tired and broken, all you want is some help, some support and someone to believe you. You put all of your hope and trust in those who you think will give you those things: the professionals. Sadly even if you do get the right diagnosis, it doesn’t always lead to help or support. You just enter the next level of the SEND Elevator –

Level 2: asking for SEN support in school so your child can be allowed to wear joggers in school instead of the trousers which feel like sandpaper to them…

Level 3: debating an EHCP draft with the LA who are 20 weeks over their legal timetable…

Level 4: asking for two hours social care support so your child can go to scouts… and being awarded 1 hour.

Up up up and away…

It’s not at all easy to be patient when life is so hard. I know that. I lived that. Take a step back and make a plan and stick to it.

2.     Gather evidence

Buy a big folder and start keeping a copy of everything. Everything. Or for the ultra-organised out there create an electronic system with everything in it. Get everything in writing. If school email you about your child – in the folder it goes. If they call you over for a little chat about any difficulty – email them so you have a record of the conversation and put that in your file. “Hey lovely teacher, it was really great to catch up today and chat about little Harri and the biting incident…” 

3.     Engage with their courses (It’s a tick box)

Parenting courses are on their checklist of “ways to check you aren’t a bad parent”. They can be soul-destroying, patronising, and tedious and no you shouldn’t have to but it’s the way the system works and they are not going to change it for you. Before you get a diagnosis it’s highly likely that the courses they send you on won’t be applicable to the needs of your child and they are often run by teenagers who haven’t had a whiff of parenthood. Smile, engage, and get the certificate, frame it! There are actually some good parenting courses that you may want to book yourself. Like Care for the family.

4.     Don’t give them any excuses 

“You are live in a paediatricians office…please do not swear” it might seem obvious to some but it’s always helpful to put your best foot forward. Sometimes they do make quick judgements about us as parents. It’s not fair but it’s just the way it is. Be yourself, I’m not encouraging you to pretend to be someone else but take the time to think about how you present yourself and your family before you go to your meetings.

5.     Focus on your child’s needs

It took me a long, long time to realise that the people assessing my child really didn’t have time to focus on how stressed, broken or tired I was. It took me a long, long time to realise they only had time to assess my child. I found my emotional and practical support elsewhere at places like Incredible Kids and from other parents who understood.

6.     Don’t just focus on your child’s needs

You’ll find it in every self-help book you could ever read – don’t forget to look after yourself and the rest of the family. Even if it’s just a takeaway coffee by yourself once a week, find a way to make it happen.  It’s easy for other relationships in your life to end up bottom of the list – it would be great if those people you care about now were still in your life when your child is a young adult and thinking of living independently.

7.     Consider saving for a private assessment 

Sometimes there are children who are so good at masking their issues that the people assessing them can’t fathom what’s going on. Their tick box says: “school say there are no issues”, “mum says challenging at home” Computer says no. With waiting lists for assessments sometimes lasting years and half-hour appointments every six months once you do get one, your child could be leaving secondary school before the paediatrician makes any decision. I’m thinking worst-case scenario, of course!! Whilst some Education Psychologists charge a lot of money you can get a full Ed Psych assessment for around £500 or an Occupational Therapy assessment for a little more. That evidence can be vital to getting over the hurdles that stop you from making progress. I know not everyone can afford it and not everyone thinks you should have to go down this route. If it’s something you feel is right, save up a little at a time, it’s cheaper than most UK weekends away. 

8.     Learn as much as you can 

Learn strategies to support your child’s needs and behaviour. This helps with number 3 above and obviously helps your child to some extent, although if your child has additional needs, you can learn every strategy under the sun and be the most perfect parent in the world and you will all still have some challenges to face on a daily basis. This is true for ALL parents. Once you’ve done that it’s time to move on to the serious stuff: the SEND Code of Practice. Whilst there may be times like 2020 Lockdown where the Government change the rules, in general, this needs to be your new bedtime reading. IPSEA and Supportive Parents (or your local SENDIAS service) produce some great leaflets and guides to simplify the legal stuff into more digestible bite-size information. If you understand your child’s rights and the responsibilities of the professionals around you then you’ll be in a much stronger position to access the help your child needs. 

9.     Create your own support

As if being misunderstood by professionals as a parent wasn’t hard enough to deal with, something often happens to friends and family whereby they make it their sole mission to convince you that you are wrong about your child. If this doesn’t happen to you, I’m glad, because it hurts ten times more than the professionals not believing you. Professionals get to see you for half an hour, twice a year through the lens of an overstretched, underfunded service, you can on some level understand why they take a long time to diagnose children. Family and friends know you inside out and should be your biggest supporters but sadly life doesn’t always go that way.

Here at Incredible Kids we make it our mission to help you create your own support network of people who understand what it’s like to be blamed, misunderstood and broken. You will need them.

10. Trust your instincts

After our first set of assessments for autism, we were told by a paediatrician, using their best gentle and understanding voice that our child did not have autism. “We don’t know what your child does have, but we know they don’t have autism”. A year later the same department had diagnosed our child with autism. We were told by the school that our child did not need any SEN support. “We just don’t see it,” said the headteacher at the time who was writing emails suggesting I was fabricating the difficulties. Within a few months of changing schools, our child had full time 1:1 and an EHCP.

NEVER GIVE UP!

The views, thoughts, and opinions expressed in the text belong solely to the author, and not necessarily to Incredible Kids

Grants for families, children and young people with SEND

If you are looking to fund something for your child whether they are stuck at home during this time or tentatively back to school then there are some very generous funders offering grants to families that have children with SEND.

At our sessions we have a huge selection of information about grants that families can apply for and offer application forms on our parent information desk. Obviously we can’t give you those at the moment so we’ve added a few of our favourites below.

  1. Boporan Charitable Trust

The Boparan Charitable Trust is one of our favourites and helps children and young people under 18 years in the UK who are disadvantaged through poverty, disability or terminal illness. Each application request is judged on its own merits, there are no set income limits and no set rules on what you can apply for. The Trust has previously funded wheelchairs, trikes, sensory books, toys and special wishes. There is a list of things they don’t generally fund but when we spoke to Boporan on the phone they told us if the need is linked to your child’s needs then it’s worth making an application or picking up the phone to check. To apply, download an application form from the website. www.theboparancharitabletrust.com

2. Family Fund

If your child has DLA or an EHCP and you receive some income-related support such as tax credits or universal credit then Family Fund could be your new best friend. Once approved for the support you could receive an annual award from their catalogue of grant offerings. Many of our families have benefited from a holiday and tell us what a difference that makes to them. With some holidays reopening now could be a good time to apply – or reapply if you are an existing member.

For those not yet ready to jet-set around the UK they have summerhouses, playhouses, outdoor play equipment and many other things that are lock-down friendly. Pro-tip: You can find the summerhouses here if you want to take a look at the options first.

For those not yet ready to jet-set around the UK they have summerhouses, playhouses, outdoor play equipment and many other things that are lock-down friendly. Pro-tip: You can find the summerhouses here if you want to take a look at the options first.

The Children’s Hope Foundation

The Hope Foundation aims to improve the lives of children and young people up to age 18, affected by illness, disability or poverty. It provides funding for anything (with a few exceptions) that will benefit the child such as medical equipment, computers, holidays and days out. 

Other ways to save money

For those who live in South Gloucestershire the old Pink Card has gone and in its place is the new SEND Registration Card administered by South Glos Parent Carers. This card will help you get a discount at places such as Bristol Zoo and the National Trust. https://www.sglospc.org.uk/latest-news-main/carer-discount. If you don’t live in South Gloucestershire then don’t panic you can use your DLA letter or blue badge to get many of the same discounts and free carer entry to many places.

Craft boxes

Recently, we have have been kindly awarded a grant from Quartet Community Foundation to help us support you during COVID-19 lockdown and beyond. As a result, we have created free craft packs with exciting activities for your child.

Photo shows craft boxes

The packs include: Doodle art books, sensory toys, materials to build simple crafts like wind chimes and bird feeders, sensory play material and instructions sheets for many activities. 

Our funding will allow us to offer a limited amount of these craft packs for free. In these times of uncertainty, some of our families will be experiencing financial hardship and may need to prioritise funds for life’s necessities.  If you are one of these families we warmly invite you to apply for one of our free packs by responding to us by emailing us on incrediblekidsuk@gmail.com – craft packs will go to the first 40 requests – limited to 2 boxes per household. 

Please do send some of your craft pack creation photos to us and we will zap them on the next newsletter for everyone to admire! The packs are diminishing fast, but there’s still a fine chance of nabbing one or two. We only have a limited amount left, but you could be lucky!

If you would love to own a pack for FREE and are finding it difficult to afford the resources, then write to us at incrediblekidsuk@gmail.com with a simple no explanation ‘ I’d love a pack ‘ and we will be delighted to send you one or two.

What’s on Summer 2020

Who knows what will be open this summer? We will all need to be a bit more creative and flexible this year as many of our normal clubs and activities may be closed. We’ve made a handy list of ideas which we will update as we get more information.

Of course, we will update you on our own service regularly through our newsletter and Facebook group. We vigilantly keep an eye on Government guidelines and make flexible plans for our own centre.

Everyone’s situation and risk tolerance is difference so we’ve listed a range of events and activities which may be suitable for your family.

Live Music Events

For those that like a bit of socially distanced loud music – Accessible tickets are available at Live from the drive-in at Filton Airfield throughout August including Dizzee Rascal, Beverley Knight, Russell Watson and many others. Under 16s able to attend with an adult. https://www.livenation.co.uk/festival/utilita-live-from-the-drive-in-bristol-tickets

Camping at Avon Valley

Due to COVID-19, Avon Valley Country Park is closed as an attraction. However, this has led them to open the park for a limited number of people who can book to camp inside the site, experiencing a safe and spacious environment to enjoy the outdoors. This is a once in a lifetime opportunity to camp inside the park’s gates among the park’s animals and play areas. https://www.avonvalley.co.uk/services/summer-camp-site/

Mojo Active

If your child or young person loves an active life then Mojo Active‘s events might be just up your street. Including COVID-19 compliant safety measures, their summer holiday club will be open as well as high ropes experiences. https://www.mojoactive.co.uk/kids/holiday-club

Jigsaw Thornbury

Keep an eye on Jigsaw’s website to see details of their online programme of summer activities. https://www.jigsawthornbury.org.uk/events/

NAS South Glos

Events such as Mojo Active and Fizz Pop Science will be held over the summer. Keep an eye on their Facebook group for events.

Wild Place

Pre-book tickets to visit Wild Place this summer with times entry and quieter visitor numbers.

Entering Post-Lockdown Social Anxiety

Most of us have been hiding away like hobbits since March, becoming ever more socially avoidant in the process. It’s no wonder that many of our children are facing severe anxiety about returning to the outside world, whatever that may look like. SEND and uncertainty are not usually the best of friends and right now it seems none of us can avoid change and precarious unpredictability. So how can we help our children to cope with these difficulties, even as we struggle ourselves as parent-carers.

1 It’s not a race

Just because you can do something doesn’t mean you have to do it, or that it has to be done right now. Take your time to think things through decide when to try new things at a pace that suits you and them.

2 Plan for Sensory Overload

If your family has been in a very quiet, low sensory environment for the last 3 months then adapting to life outside of the home will bring a whole range of sensory experiences that can quickly overwhelm. Think about where you will take a break before you go out and how you can minimise sudden sensory explosions. You don’t want to feel like you’ve walked into a firework factory with a match on day one so look for your ear defenders, sunglasses, chew toys, noise-cancelling headphones and whatever you know will help your child cope. Take new experiences slowly if you can, it’s better to do a small thing well than attempt trip to Bristol Zoo on a sunny Saturday with a coach load of toddlers.

3 You’re not alone

Although you may have been isolated in person from friends and family, remember that we are all in this together. Families at Incredible Kids can access our online closed Facebook group to reach out for support. Don’t be afraid to ask others how they are feeling, chances are they will be having the same worries and anxieties.

4 Decide what feels right for your family

There is lots of advice out there about how to live post-lockdown including this great podcast. Only you and your family can decide what’s right for you. Whether you want to go to Aldi head to toe in PPE or chose quieter places to start and go mask free – you will need to choose what feels right for you. There will be many decisions to make and discussing each of them as a family, or taking advantage of the many social stories and advice will help you decide. If you or your child are feeling highly anxious about coronavirus then seek advice and arm yourself with the facts.

Incredible Activity Pack

Lockdown and summer holidays provides a lot of time to fill. Not everyone has the natural talents of Mr Maker or Mr Tumble so we thought we would make our own activity pack to give you activities to keep your family engaged and busy over the summer.

Our playworkers have put their best creative hats on and designed our Incredible Activity Pack with 86 pages of ideas. Each activity has been given a handy guide to help you find the ones most likely to appeal to your family.

Please let us know what you think of the activities and send us your pictures of your Incredible Mr Makes!

Download “Incredible Activity Pack” Incredible-Kids-2020-Summer-Activity-Pack.pdf – Downloaded 46 times – 50 MB

SEND Children & Young People: Planning for an Uncertain Summer Holiday

On the face of it, three months lockdown sounds appealing – getting up when you want, no pressure of work and of course, hours of bonding time. Scratch the surface, however, and you’ll see the cracks. For some families, lockdown has been a mixed blessing – on one hand, it’s been great to spend time together but on the other, the lack of facilities and activities on offer have impacted heavily on families, causing more than their fair share of angst. And it’s not over yet.

Here come the summer holidays (sort of)

With some pupils returning to school, the assumption is that once the end of term bell rings, the summer holidays will be in full swing. But it won’t be like the 6-week break we are used to.

In other words, the attractions that welcome us with open arms for an hour or two will either still be closed or their hours reduced, their activities limited and, due to social distancing, restricted numbers of visitors too.

All those places and people you rely on to give you the break you need with a welcome hiatus in your routine are not there and if they are, can’t offer what they normally do. For many, many children with SEND, lockdown was tough. Wiping away their routines and regular support, you’ll have grappled with the fall out at times.

The long summer break, even when it looks and feels like ‘normal’, is a change to routine that needs to be managed. This year, it will feel different. How can you make the most of your time together during the upcoming summer holidays?

1 The Now & Next Board

It won’t work for everyone but if routine provides the stability your child needs, the ‘Now & Next Board’ can be a handy tool for establishing one during the upcoming summer holidays. There are various ways to use this board:

  • Use photos of what is happening now and in the next column, a photo of the next activity
  • If your child prefers a view of the whole day, use photos of the activities that will take place (and in order)
  • Create a weekly overview, again using images and photos

You can change this board and how you use it to suit your child. Using coloured pens and involving your child in the planning is also a great move.

2 Staying in touch online

We’ve heard a lot about Zoom meeting and other online platforms that have been connecting people, sometimes with hilarious results. These platforms, including WhatsApp and Google Meets, have proved invaluable over recent months. Even though we can now go out more and do more, there are still vulnerable people we need to shield.

Using these platforms to link with friends and family members is great for factoring into your summer holiday timetable. For many children, maintaining contact with the people they would normally see regularly is a means of accessing their support. It is also invaluable for staying in touch with friends.

It can also be a good time to talk about online safety, including when your child plays games online too.

3 Home activities

When you need it most, you’ll find that your memory fails you and that great idea you had for a calming or fun craft activity at home is lost. Creating your own resources is the solution. As well as a list of activities for rainy days, you can have activities on stand-by that help to quell growing anxieties or as a fun family project that everyone contributes to.

As well as having a list and links to relevant online resources, make sure you have all the necessary equipment ready too. If you don’t use it during the summer holidays, you have it there for future holidays and long weekends. Retailers are delivering and so you’ll come across great deals on everything from Play Dough to baking goods and more. Incredible Kids has created an online resource of SEND lockdown-friendly play activities.

Don’t forget story time and music – why not create lists on Spotify of your summer tunes? You can enjoy singing time as well as making and playing your own instruments from materials you have at home.

Ideas include:

  • Deaf children can use Zoom to create online quizzes with their friends
  • Hold storytime online with friends and family
  • Baking and cooking – bake a cake and then hold an online ‘tea for two’ with grandparents or friends
  • Art activities with Coach Art

When summer ends and school starts

The pandemic has had devastating effects on families across local communities, the UK and beyond. It’s not just adults who have found this an anxious time but children too. The easing of lockdown and the impending return to normal life has heightened these anxieties in many cases.

For children and young people with disabilities, returning to school at the end of the summer holidays will present them with a whole new set of challenges. As yet, we don’t know how school will ‘look’ in September, but the UK Government has sent a clear message – parents and carers who refuse to send their children to school in September will potentially face fines (unless you home school your children). That means the pressure is on parents and carers to prepare their children for the new term and this year, it’s more than just about buying new shoes and uniform.

Children and young people with communication needs will find expressing these anxieties difficult. Social stories are a wonderful way of introducing ideas of what school may look like in the new term. From washing hands more often to having to stay apart for a little longer, these stories help children to understand these changes. Singing with Makaton is also a wonderful way of introducing the new-look school environment too. 

You can’t plan everything

As a parent of a child or young person with disabilities, you’ll know and understand the importance of routine and how, when the circumstances and environment around this changes, it can send shockwaves through the home.

Planning is important but you can’t plan everything. The issue with the recent pandemic is that Government advice on what you can do, when and with whom will continue to change, something that in itself causes uncertainty. Even though the rules of lockdown change, it doesn’t mean you have to make changes immediately – stay in your bubble for a little longer, if you need to.

Don’t forget to enjoy this time together but stay in touch with other SEND families so you can support each other, but also develop great ideas for getting through the upcoming summer holidays and the impending return to school in September. If you’re not already a member make sure you join our facebook group to stay in touch with other families.

Take a look at:

Art – https://coachart.org/blog/10-easy-crafts-for-kids-with-motor-disabilities/ and https://www.autismparentingmagazine.com/art-projects-for-special-needs/

Social Stories – https://carolgraysocialstories.com/pandemic-social-stories-direct-access/ and https://www.andnextcomesl.com/p/printable-social-stories.html

Check out YouTube for Makaton singing with Singing Hands – https://www.youtube.com/playlist?list=PLjT4XhijakZiqAV_QjFd-8nV5CuO5Rpnz