How Family Fund has helped us and how they could help you!

A Little Bit About Family Fund

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Family Fund, like so many other charities, helps families like ours across the UK. If you are raising a disabled or child who is seriously ill and they are under the age of 17 and are on a low income, Family Fund may be able to assist you as a family or the individual child.

Last year, Family Fund provided over 88,000 grants and services worth over £33 million to families across the UK but without regular money coming in they wouldn’t be able to continue the great work they do. We were one of those families. Thanks to their kindness and grants, we have been able to proper time together as a family.
Family Fund was first established in 1973, and the first grant of £26 for hospital visiting costs was issued on 1 April 1973. In 1996, Family Fund became an independent charitable trust. Today, they are funded by the four UK governments, private donations and income they generate through the work of their Family Fund Business Services.

Our Story

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We discovered Family Fund through our son’s Occupational Therapist. We wanted to go on a proper family holiday, but having recently given up work to care for our disabled son, we only had one income, and it was a struggle. So we discovered Family Fund, and I was pleasantly surprised by how straight forward the application process was. Our application was sent via the post with the supporting documentation, and it was roughly four weeks before we had our first approval. We’d applied for a Haven holiday voucher. Like most charities, you have to have a particular item or holiday in mind when you apply. They offer Ipads, white goods, garden modifications, holidays, clothing, just to name a few. You can apply, however, to change your funding once it has been approved if you want to change your award. We have never requested two items, but I have friends who have applied for money towards a holiday and garden equipment like a trampoline.

Once the voucher is awarded. It takes seven days to be credited to Haven or the appropriate holiday provider. Our first voucher we’d already booked our trip, so I called up and told them about our award, and they credited the amount to our holiday. This has since changed, and you can’t use the voucher for any holidays already booked. You can, of course, book two trips and use the voucher towards both.

What it has given us

We are no longer cramped in a budget hotel, in one room having to go to bed at 9pm with our son, having a caravan provides us with the flexibility to put him to bed and sit in another room and spend time with our daughter. We have found both Haven and Perran Sands to be so accommodating. Thomas is sensitive to noise, so we have always requested a caravan away from the entertainment centre. For the first time, this year have requested an accessible caravan as it was a struggle last year.
We have used Family Fund now for three or four years, I logon to our online account and once a year request a Haven holiday. They limit you to once a year applications for obvious reasons although in exceptional circumstances the may accept a further application.

How can you help them

It is often underestimated how much it can cost to raise a disabled child. In fact, on average, it costs three times more to raise a disabled child compared to a child without additional needs. Family Fund understands this and is committed to help families, improve their quality of life and help them feel included. A big key to their success is fundraising.
Every penny raised will help Family Fund continue to develop and deliver new ways to support families raising disabled or seriously ill children.
Whether you fancy hosting your own Messy Tea Party or Dress Fun Friday on the 21st June 2019. There are still so many families to help! Please check out their website for more information about how you could help.
If you have any questions about donating to, or fundraising for Family Fund, you can speak to their Fundraising Team on 01904 550033 or email fundraising@familyfund.org.uk.
*We are not affiliated, associated, authorised, endorsed by, or in any way officially connected with the Family Fund or Haven Holidays.*

Navigating Legoland Windsor with a Special Needs Child

What is Legoland Windsor?

Now, if you are from the UK. Most of us have at least heard of Legoland Windsor. It is a Merlin Attractions owned theme park in the Berkshire countryside, within an hours drive of London (traffic permitting). It is influenced by Lego and is ideal for children under the age of 13. Rides range from pre-school to primary school. If you like thrills and rollercoasters, you may be better visiting nearby Chessington World of Adventures or Thorpe Park.

Costs in Involved

Like most theme parks, Legoland isn’t cheap and the average price per ticket is £50-£60 per person. Under 3’s go free. They often do deals with Kelloggs, where a parent gets in free with a visiting child, this is usually towards the summer months but can offer significant savings.

My daughter and I have Merlin Premium Annual passes (Please see my other post on perks and costs involved). She’s nearly 12 and loves theme parks, so I invested in Annual Passes last year. My son has special needs and I’m not currently sure, whether the cost of the annual pass would be worth it (watch this space). My husband gets in free as a carer. So entrance wisely it cost us £15.00 for our son as we used a Friends and Family discount (perks).

I would suggest booking in advance as you could save up to 30%.

The Disabled Visitor

Driving towards the Legoland car park is easily signposted, I especially love the extra touch of mini lego characters. Disabled parking is located near the premium parking and right at the front of the entrance. We couldn’t have parked any closer. The picture of us in front of the blue railings is a foot in front of our car!

Like most theme parks now, you are greeted by security doing a bag search. They are lovely and high fived us all through the gate and at the end of the day are for our own safety.

To the average family, a trip to Legoland is like any normal day out but to a child with special needs, it could be all kinds of hell. Long queues, long noises from all directions, music, lots of people, unfamiliar surroundings, I could go on. But why should learning difficulties or social disorders stop our children from experiencing the norm? Especially when Legoland Windsor assist in helping cut out a little of the stress.

Thomas is eight years old now and I want him to experience things that other children his age do, just with support and a lot of advanced planning. I had heard rumours that Merlin and Legoland especially had changed their Ride Access Pass. I was keen to understand how it would work and why a few families were upset with the change.

With hindsight, I should have pre-booked our ride access pass, as that queue was empty and we spent 15 minutes with a distressed eight-year-old! The man at the Ride Access Pass explained all the details and we went on our way.

The Q Bot System

So the new Legoland version uses the QBot system. It’s basically a virtual queue. So for example, we love The Dragon rollercoaster and reserved our ‘space’ in the queue. It gave us 30 minutes, so we found a couple of five-minute queues and the time raced through. It did get busier and we found that by 4pm, the thought of waiting 45 minutes to get on any of the rides was just too much but I like the system. It’s a phone based system (remember battery charger although you can borrow phones). There are limitations, I agree it would be handy if one queue is 45 minutes that you could be able to add a second ride.

So our time counts down and we approach the ride through the Qbot entrance, pretty much enter straight away and don’t feel guilty for queue jumping as we have been queuing ‘virtually’ for the same time as the people at the front of the queue. It is however frustrating when your child wants to go straight back on but the queue is 40 minutes! That being said, I do like how it works, it probably won’t work for everyone but have a snack, drink, toilet break, face painted, lunch, look around the shops, it soon ticks down.

Ninjago: The Ride
Ninjago: The Ride

Staying Over

Legoland Windsor is a resort with two onsite hotels. The Legoland Resort Hotel includes everything for the die-hard Lego fan including The Bricks Family Restaurant and themed rooms, while nearby you can spend the night with Knights and Wizards in the Legoland Castle Hotel. Added bonus staying on site, closer to the park and an extra 30 minutes park access to some of the rides.

If you can’t stretch your budget for an onsite hotel, there are plenty of nearby budget hotels including Hilton Bracknell and The Copthorne Hotel both which are in easy reach of the park.

A Few Negatives

There has to be a few right?

  1. Now TV giving away free sticks – Now I’m all for a freebie but we passed them five or six times and it grew irritating!
  2. Some rides need an update. Vikings’ River Splash for example, we barely got a dribble of water on us, the bucket had been removed and nothing sprayed water anymore, it was a little disappointing.
  3. The NEW Wafflemeister – I love a good waffle, who doesn’t? I was excited to see one at Legoland Windsor, however, it should have come with its own queue time! I left the queue after queueing for ten minutes without moving!

My Top Five Tips for Navigating Legoland Windsor

  1. Pre-Visit – Check out Legoland Windsor Resort for all the update news, opening hours, new attractions or any ride restrictions.
  2. Pre-Visit – Make sure you have a fully charged phone and bring a second portable battery charger. My S9 lasted until 1.30pm before I needed an extra charge during lunch.
  3. During your Visit – Have fun, it is such a lovely family day out, there is a changing places accessible toilet in the main Heartlake City area and various disabled toilets dotted around, that need radar keys.
  4. During your visit – If it gets too much and you need a time out, there are plenty of picnic spots, with grassy areas to chill out or maybe take a look at the Total Sensory Space, its located in Heartlake City and is perfect for chillout. Unfortunately, during our visit, it was quite busy so I struggled to take photographs. There are a few on Legoland Windsors Resort. 
  5. After your visit – Don’t forget to download photographs (if you have any) and consider your next trip.

So there are a few of my tips for navigating Legoland Windsor with a Special Needs child and probably for most children under the age of seven.

Conclusion

Despite our original reservations, we managed a full day in the park. We tried out the City Walk Pizza and Pasta Buffet for lunch and wasn’t disappointed, we even saved 20% due to having Annual Passes. It’s all in the planning, taking the day as it comes and having no expectations. We’d already made the decision that should he struggle after an hour we would call it a day but he loved it. I can’t thank the staff enough, they were all accommodating, happy to help and on hand if we needed any advice.

Have you been to Legoland Windsor recently? Did you love it? Did you hate it? Do you think the Q Bot system works as part of the ride access pass? What do you think of the Merlin annual passes? Please drop me a comment below or click follow to read more posts like this in the future!

Thank you for Reading…

Juggling Work with a Special Needs Child

I came across an article recently where a parent/Mum spoke about her constant juggle with her home and work life balance. It got me thinking about my own work/life juggle. If you would like to check out the article written by Tania Tirraoro please check it out here at Special Needs Jungle.

I’m not going to lie, I wanted a career! It was important to me, it was one of my life goals. Happy and content mum means equally happy and satisfied children! I wanted it all… excellent career while juggling childcare and home life. For the most part, it worked, after having my eldest (11) I had no choice but to return to full-time work. Unfortunately, mortgages don’t pay themselves! I was lucky my Mum worked afternoons, so she had my daughter all day on a Monday and every morning. It was a life saver, as my employer was far from flexible. Childcare was one of our most substantial expenses and even with my mum’s help, it was still over £800 a month!

For three years, I worked up the career ladder, moved companies and continued to juggle family life. After having my son (8) things were going to be very different, he was born with Strep B and developed meningitis at three days old, please see my other post ‘My Son was Born with Strep B’.

Suddenly I had a baby that needed physio, occupational therapy, consultants, tests, scans, hospital appointments and needs beyond an average child. I was ever hopeful that my employer would understand my need to work part-time, it wasn’t your average circumstances. I didn’t return to my old job, it was no longer suitable and for a year I muddle along. I quickly realised how I saw flexible working, wasn’t how my employer did. I was continually taking holiday to attend appointments, having unpaid leave because nursery called as he had a temperature and the push came when I had to cancel three of his appointments. Appointments that once cancelled take three months to get booked in. I was having an emotional week, I walked into work and almost instantly nursery called and he’d been sick (he had reflux). I felt guilty for not giving work my 100% attention and I felt more guilty that my son’s needs were now suffering. He wasn’t doing well at nursery, he was struggling with his development and I went home that afternoon and wrote my resignation letter. The relief I felt was one of the best feelings. I never wanted to leave, but it wasn’t about me. Thomas needed his Mummy and nursery wasn’t going to fill the hole.

It was a decision that I have never regretted. It gave me time with Thomas to attend his appointments, plan for his future and spend the time that I just wasn’t getting while I worked. I worked part-time for a hotel, working a couple of evenings around my husband. It worked for us at the time.

Call me naive, but at this point, Thomas was still a toddler and developing averagely on time if not a little behind. He attended nursery two days a week, as I felt he still needed the social side of it and secretly I was hoping that once he was settled, I could get a part-time job and give up the evenings! Having taken the financial drop in pay, reducing the nursery costs, we lost most of our child tax credits. We muddled on for a few months until I cut nursery down to one day a week, it was pointless, but still, I wanted him to be like his sister and learn from others.

It just didn’t work, so I resided to the fact that it was best to remove him altogether. Fast forward two years, I thought the answer was return to education and get a ‘proper’ degree. He was young, at a nursery and it would work around it and for the most part it did but suddenly he wasn’t hitting his milestones, nursery kept calling me asking me to collect him for various reasons and then the file straw, I was two days late paying an invoice due to them undercharging, and they told me that they felt it best that he left.

CrayonsI guess back then, I still had this idealistic view that I wanted him to have a healthy life. Like most parents with special needs children, we want what is best for them and them to feel included. My dreams of a mainstream school were quickly fading when his epilepsy was diagnosed. He attended a special needs nursery, who were terrific!

Six years on, I was still working evenings having struggled to find a part-time job that contained the flexibility of hospitality. Degree under my belt, but for what it’s worth it hasn’t advanced my career, but it made me feel better.

How it Works for Us…

Three years ago, during my degree my husband came home from work one morning,  told me he couldn’t do it anymore. We’d had a tough night with Thomas, neither of us slept well, and it made a decision we’d been struggling to make more comfortable. He would give up full-time work, become Thomas’ full-time carer and I’d continue my degree. He now works part-time from home, around Thomas’ school drop-offs and pickups.

I tried last year to return to full-time work, financially one of us needs to work full time. It wasn’t, however, that easy. I wanted something locally so I could be at home within 15 minutes, but it was impossible. Most of the commutes were at least 30-40 minutes each way and as a family, it would never work. I realised very quickly that part-time hours would be our only option,

School HolidaysOur biggest struggle is the school holidays, we have one or two decent child care providers in our area who can caterer for disabled children and as you can imagine they fill up quickly and limit the sessions that a child can attend. Unfortunately, we don’t have parents who are able to offer their services for a variety of reasons we rely on school, holiday clubs and a playscheme one or two a month on a Saturday. We are still lucky in that respect, but I do panic with all the government’s budget cuts concerning disabled funding that within a few years they will be closed.

I like to call these types of posts ‘the get to know me’. No real reason but to share a little bit about our lives and our world. Do you struggle with work/life balance? Have you had to make changes to your working life to adapt to the balance? Please share your own stories or blog posts below.

Thanks for reading…

My Son was Born With Strep B…

There has been a lot in the news lately concerning Strep B. I am very much an advocate for educating and share a lot of news from The Group Strep B Support website. There is a whole host of information and Jane Plumb MBE, is the founder alongside her husband, Robert. Please have a read. Their campaign to improve awareness is fantastic.

I find writing about my son, Thomas the hardest. Not because I don’t want to but because unless you’ve lived it or you live it, it’s hard to understand. And if I’m honest, I’m not sure if I’ve ever come to terms with it. Thomas was four days old in the photo and at the height of the infection.

However, I am currently sat on Thomas’ bedroom floor while he sleeps, I will try to sneak out again in five minutes, but this is where you will find me between 8.30pm and 10.00pm most evenings.

I want to share Thomas’ and our story because as a Mum, we read all the books, we listened to what Doctors, Midwives and what everyone else said and none of it mattered.

Thomas is our youngest child, he has an elder sister called Alana. Both straight forward and relativity uncomplicated pregnancies. Both born naturally and healthy, I guess you could say. Thomas wasn’t right from when we arrived home, call it gut instinct.

At three days old Thomas was back in the hospital fighting for his life after being diagnosed as having Group B Strep, it’s a bacteria that usually is quite harmless lives in the gut or vagina however on birth it was transferred to Thomas. He went on to develop early-onset Strep B meningitis and spent three weeks in the hospital. Looking back, three weeks was nothing really, but at the time I was 40 miles from home, it was hard for visitors due to the distance and Thomas was extremely ill.

What shocked me was that I had no awareness of Group Strep B or anything related, there had been no leaflet in my maternity pack, no posters on the wall. It never hit my radar, until the Doctor uttered the words I will always remember. ‘Your son, has meningitis…have you ever heard of the Strep B infection?’ That sentence changed our lives. Ironically, I sat in the Doctors waiting room three months after his birth opposite a Group Strep B poster!

Thomas was a little fighter and the photo above was taken last year celebrating his eighth birthday! A day that has now become a big deal in our house as it reminds us of how far we’ve come. I don’t want to dwell too much longer on the past. I can be honest and say that Thomas has a multitude of problems ranging from epilepsy, cerebral palsy, learning difficulties, speech and language delay and social disorders but he’s Thomas and a daily challenge but he’s our miracle.

I will talk more about Thomas, epilepsy, cerebral palsy and other related things over the next few months. If you have any questions, please feel free to contact me. If any of you have been affected by any of this, please share any thoughts and feelings. I do have a facebook group ‘Group B Strep Awareness’.

Thanks for reading…

*All opinions are my own, I have not been sponsored, paid or gifted any items in respect of my views and opinions. I also apologise if you found any of the images upsetting*.