Tuesday, 9 April 2019

How Little Hiccups started 10 years ago...

Thirteen years ago I gave birth to my little boy, full of the joys of becoming a parent and filled with all of the dreams and aspirations for our lives ahead…. those dreams were shattered just a few days afterwards as we very nearly lost our boy to Hypoglycaemia. We spent the following weeks in PICU and HDU before finally bringing our son home, only to keep returning to the LGI as the extent of his injuries came apparent. Jack had been left with scarring all over his brain, resulting in him having severe cortical visual impairment, he cannot sit, stand, hold up his head, or use his hands. He cannot speak (though he can certainly vocalise and express his teenage strops ;) he is fed via a gastrostomy and has a very difficult to treat form of Epilepsy called Lennox Gastaut Syndrome which means he has 20-30 seizures a day of every different kind. All that said, he is the most loving and inspirational boy I have ever met :)

I remember how hard life was back in the early days. I felt consumed by grief and fear for what was to come. Friends and family didn’t always understand - how could they!!? Some people backed away and left me completely isolated and alone. Jack had a growing number of therapists involved in his care, physios, OT’s, speech and language, epilepsy nurses, community nurses, VI teacher, Portage worker, Specialist health visitor, neurologist, paediatrician ….. and they were great, always asking if I wanted to be “put in touch with another family” but I knew if I had to speak the words out loud it was going to make it real!

Finally I did speak to another mum. We spoke of Epilepsy meds and hospital visits, the hardest conversation I have ever had, trying to speak with that lump in my throat and hold back the tears. However, that was my turning point! I realised I wasn’t on my own, there are other families out there going through this too!

The next couple of years saw me leaving my job of 18 years and becoming a single parent, not how I had expected my life to go but Jack needed me more than ever. I recall sitting in Children’s Outpatients one day and looking at the other parents with small babies and a look of total fear in their eyes, wondering what the Drs would tell them next. I knew how they felt and wanted so say “Its ok, you’re not on your own.”

We had been told that Jack’s condition was life limiting, heartbreaking! Somehow I had to get my head, and my heart around that. For a while it did consume me, until I realised I was grieving yet my boy was still here! Still in my arms! This was not the time to grieve, but to make sure I do Jack proud, and give him  the very best life I can. My greatest fear is to stand at his grave and feel I have let him down, which I have no intention of doing!  

Ten years ago I happened to be in the right place at the right time and secured the backing to get “Little Hiccups” up and running. I wanted to bring families together so they would know they weren’t on their own and could support each other. We started with bags of toys and a jar of coffee, ten years later we support over 300 local families and offer a range of services!

We run Stay and Play every Thursday afternoon at Leeds Mencap, an Outreach Service, Hydrotherapy Sessions, Information and Counselling services and a monthly Family Fun Day offering families the opportunity to do activities such as visit local attractions, the cinema (which is always fun with feed pumps, wheelchairs, walking frames and excited children) Canal Boating, Bowling, Water Sports, Parties, Skiing, Wall Climbing, Photoshoots and even Indoor Skydiving!

We firmly believe that our children, no matter what their diagnosis, have the right to experience as much of life as possible and make oodles of many happy memories with their friends and family. Life is a journey and this path we walk certainly isn’t an easy one, however it is very rewarding and we consider ourselves blessed to be part of these special children’s lives and to help make a difference.

Monday, 25 March 2019

Ever just wanted a decent picture of your child??

You all know the routine - you have a child that won't sit still, that struggles with a new environment, that cannot or will not pose for photos. There are many frustrations from families that just want a decent family photo and are unable to get one. One of the main concerns is that the photographer will not understand or be patient enough with the child. That the child will end up frustrated at being forced to pose in a way they do not want and the session ends in a melt down. 

I have so many families contacting me before these sessions worried about how it will go - and I always tell them the same thing.  You don't need to worry - not with Dean. 

Dean has many years experience working with families who have children with additional needs. His experience stems from his personal life and his work life and shows itself beautifully in his photos. We've never had a family come away unhappy and in fact many declare that this is the fist time a photoshoot has been successful. You can't really ask more than that! 

Although I didn't go along to this photoshoot (we just leave him to it now!) I've been myself with my children and I can speak from first hand knowledge at how good Dean is at capturing every person's personality. My two eldest children are polar opposites. I have one that won't say a word when she's out and just stares at people and I have another who is impossible to pin down and speaks at around a million words a minute and yet its not a problem. Trust is earned within minutes and the children are giggling away at Dean's entertainment. They love him to bits now. We generally start with the loud one! He's up for all kinds of poses and shows off while Dean snaps away (they'll always be one that isn't a blur!) The quiet one stands and watches and slowly prepares for her turn then when its is I even glimpse a rare smile. We can then persuade them to have photos together and, dare I say it, even hug...(they've hit that age after all!) We're never disappointed and the results always end up on the wall!

But don't just take my word for it. Here's some feedback from Little Hiccups parents:

Picking the photos on the laptop
"Fantastic experience. Dean greeted the boys, made them feel at ease in a judgement free zone! We’ve done a few photo shoots before but never been able to get good pictures or had the boys enjoy the experience before. Fantastic photos, great stress-free experience. Would highly recommend to anyone who dreads the ‘mission impossible’ of family photos."

"We went to deans and from the minute we walked through the door he was so pleasant and welcoming and made Ella feel so at home by letting her be herself. She loved every minute of it and he managed to get her to sit in the box for the photos to be taken and even got some amazing smiles from her. (No idea how as when I ask her to smile for pictures she acts the clown and pulls funny faces) she loved looking at the photos he had taken on his laptop before taking some more. The finished in the box picture is amazing. We will be booking with him again at some point through the year because we loved it so much"

"Dean was brilliant with us and great with Jack. He really put us all at ease."

"I cant believe this little beauty came from me.. i know im biased but hes sooo beautiful. He absolutely loved his photoshoot the little poser. Thankyou little hiccups xx"

Tuesday, 12 March 2019

10 Sleep Remedies by Hannah Dent

As its Little Hiccups' 10th Birthday this year we have asked our families for 10 Things that help them in day to day life. Hannah Dent shares 10 Sleep remedies that she uses to get her child to sleep on an evening. We all know how important sleep is for you and your child but the truth is that if you have a child with additional needs you're probably not getting enough! There is no end to the amount of advice that you can find but its important that you find one that works for you and your family. Here are Hannah's:
  1. Bath your child after dinner in the early evening allowing time for your child to come back down from splish splash fun. Then start the bedtime routine downstairs.
  2. Half a banana about 30 minutes before bed with a glass of warm milk. (More for getting them through the night).
  3. Don't take anyone else's advice to the letter you will find your own way within the advice.
  4. If it's not working and you've tried and I mean really tried to follow a Super Nanny course of bedtime routine then abandon it to another remedy.
  5. Treat bedtime as an all night event.  We all want that day to end and bed time to come...Now!!! However that pressure to make it quick and easy will allude to missed routine,  forgotten important steps and anxious kids. Treat it like you're in for the long haul and you probably won't be.
  6. Sensitive children like to use their senses to go to sleep.  Many use weighted blankets, some use safe spaces, others teddies, some wriggle their legs as if restless and some like mine like to have massages of the feet and nails tickling their arms and back. We call it nails and the circular motion is enough for him to relax into sleep.
  7. A child that leaves their bed after lights out.. lie with them on the floor, I've two old sofa cushions I prop against the radiator and sit until he's reassured enough to sleep. (The longhaul).
  8. Don't try and exercise them to sleep with  big long walks/park etc..Endorphins wake you up.
  9. Keep a sleep record so you can try and identify the worst days and the causes.
  10. Remember you're in it for the long haul.  If you're 3 hours into a long sleepless stretch that's starting to build tension between parent and child  then break off. Go back downstairs and do what I call baby checks. Are they hungry, are they the right temperature,  are they ill, did your husband let them nap earlier 😂😂😂. Read a book, play some relaxing music then try again.
Do you have any hint and tips for life with a child with additional needs? Please email Miriam on info@littlehiccups.co.uk to share them.

Monday, 25 February 2019

Have you ever felt completely alone in a room full of people?

Have you ever felt completely alone in a room full of people? In the baby groups you hide your growing concerns in small talk with the other new mummies. You try and ignore the voices in your head and agree with those telling you everything will be alright, but deep down you know it won't be.

It was in this muddle of emotions that I first found Little Hiccups. Emily had been hospitalised with seizures at 10 weeks old. Blood tests, lumbar puncture, EEGs and MRI scan followed but answers were few and far between. With a growing list of places where Emily and I no longer fitted in, Little Hiccups stay and play sessions quickly became the highlight of our week. A place where we could seek advice and understanding from others in similar situations. And if all Emily did was sleep while I ate my own body weight in biscuits, it didn't matter. No one cared. I didn't have to pretend that everything was ok.

Thanks to Little Hiccups we've enjoyed some fantastic experiences as a family - cinema trips where no one tuts if your child has to make a noise or run around, festive days out at Sundown Adventureland, steering a canal boat, cuddling a rabbit or even a snake a tarantula and Emily 'paddling' in her wheelchair at the beach. We can't wait for Emily to sample skiing and skydiving in the years to come! I've crawled through mud and swam through freezing cold water to raise money and we've enjoyed a rare night out as a couple at the annual Little Hiccups Ball.

Since plucking up the courage to go to that first stay and play group seven years ago, Little Hiccups has been a massive support to our whole family. Alongside copious amounts of tea/coffee and biscuits, they've provided loads of advice, raised awareness of other groups and services, listened to our fears and shared our successes. Having a child with special needs can be a long and exhausting journey, but with Little Hiccups it doesn't have to be a lonely one.

Wednesday, 20 February 2019

Relaxed Play Session

Little Hiccups ethos is #NoLimits (you've probably heard us mention that once or twice) but it is important to remember that everyone's limit is different. And this is something that we try to express through our events. So you do have the high flying events and the fast paced events that leave you buzzing and exhilarated after the event. But that is not the whole story. Pushing the boundaries of #NoLimits is a scale and what one child is happy doing might not even enter the consideration of another child.

The thing about Little Hiccups however, is that we keep trying. We keep reaching and striving that little bit further and the children keep experiencing new events. It may not work the first or second time, but it may the third.

I'm thinking of one family in particular where this was was especially prominent (and if the mum is reading this she'll know its her as I've mentioned it to her before). When they first joined us at Stay n Play along with their young child with autism they used to manage 10 minutes maximum before it became too much and they had to leave. But they kept coming and they kept trying. And that 10 minutes increased slowly as he came to know the environment. The same happened at the Family Fun Days. They used to come and only stay briefly before having to go home. But they kept coming and he learnt that these events and others were safe and he started exploring and expanding his limits. I have a very fond memory of this child dancing at one of our parties. He truly does portray everything we try to achieve and we're looking forward to seeing him strive even further forward.

And this is what our February event is about. We visited the soft play center, Kid Zone in Garforth and it was just fun. There was no stress and no anxiety. It was only Little Hiccups families in there and it was easy. To the extent I even managed to sit down during this event! The children went and played and the adults relaxed with a hot drink courtesy of Little Hiccups. The families were all fed so people didn't need to worry about dinner when they got out and hopefully a lot slept well that night from all the exercise.

A massive thank you to Kid Zone for making it so stress free for us. I really do recommend this place as they are so keen to make everyone feel welcome. They also have a Sensory Room for those that just want to relax a little rather than run around like crazy! Follow them on Facebook to find out about their Relaxed Sessions.

Kidzone website

Monday, 28 January 2019

Now that's how you throw a party...

Its been a (very busy!) month since our party but it is still talked about. Every year there is the challenge of making sure that the Christmas Party is just as special for our children as it has been in previous years.

This year we had a special Disney twist (and who doesn't love a bit of Disney!) because Little Hiccups, through In Kind Direct, have been joined with The Disney Store in The White Rose Centre, Leeds. And what this means is that if The Disney Store had any stock in the shop that they couldn't sell (ie. end of sale, slightly damaged, no box, parts missing, etc) they put it all in a big box and give us a call. We go and pick it up and over the year have collected some wonderful, wonderful gifts to pass onto the Hiccups children. Knowing this, we obviously went with the theme and had a Disney Christmas. Susie Sparkles was back as Jessie and Woody from Toy Story and the balloons from Celebration Balloons were Disney style. We had Claire's Facepainting back with her wonderful talent and this year she brought a friend, Louise, who created masterpieces from balloons. I spent most of the party with a unicorn on my head but that is another story...

We were back at The Royal Armouries and the room was again decorated in a truly beautiful manner. It makes the party feel so special as if the decorations were just for us. And this is what we want to get across to the Hiccups families - that they ARE special. That they SHOULD be invited to the most amazing parties and they definitely should enjoy themselves at all times of the year but especially at Christmas because that is when magic is real. And if anybody deserves magic its the Little Hiccups families.

A massive thank you to our Santa and elves who held back their return to the North Pole to visit our party and as always excelled themselves. There were so many happy children coming away with their gifts. And of course, thank you also to our photographers of the day, Heather (one of our volunteers) and Dean from Dean Sanderson Photography, because special memories like these are meant to be kept forever. Although I was slightly disappointed that Heather turned up in Disney style BUT Dean didn't. Next time maybe...An Alice in Wonderland and a White Rabbit theme would be perfect :-)

Wonder what our 2019 Christmas Party will bring? Thank you all for coming.

"Great party!! Thank you all!!"

"Such a fantastic time at our first Little Hiccups Christmas party yesterday. Both kids, even the "too cool for school" pre teen had a wonderful time and thoroughly love their gifts. Small one is upstairs now, racing his remote control car around the landing! Next one for us is Clip and Climb! See you there!"

"Nathan enjoying himself as Woody from Toy Story at The Royal Armouries today for the Little Hiccups Enchanted Christmas Party. He even won a cute little trophy for dancing on the dance floor!"
"Thank you Little Hiccups. xxxx"

Thank you for another great party we had a fab time and they loved their gifts xx"

"Callum loved it. Thank you hiccups"

"Our first little hiccups event and it was amazing, thanks so much for everything Woody and Jessie were great, food was yummy (especially the pudding) and the presents they got from Santa were fabolus all 4 of my children loved them really thoughtful gifts thanks you so much xx"
"Thankyou little hiccups for a wonderful Christmas party xxxxx."
"Thank u for a beautiful party, food was amazing ! And while atmosphere was brill, always love meeting our gorgeous friends there THANK YOU"
"That’s how you throw a party. Thank you xx"

"Thank you for the lovely party glad we came both boys had fun and now are both asleep now. Thank you also for the lovely Santa gifted boys love them. Santa must of know we love Olaf and McQueen"

Monday, 21 January 2019

Climbing to new heights

Well - if you wanted to kick off the year in style, visiting Clip n Climb in the miserable month of January is certainly the way to do it! I think a few bucket lists and conquering fears were achieved this day. We certainly had a few nervous looking families on arrival who went away beaming by the end of the day. 

We had approached Clip n Climb last September to organise a SEND session for Little Hiccups and right from the get go we knew this would be a fantastic event. The owners were keen to have us and were honestly one of the most approachable and helpful companies I've ever planned with. We explained we have a range of abilities and ages and include siblings in the events  and on the day we had around 150 people attending the to Clip n Climb event. 

It was slightly crazy as most of our big events are but I can honestly say this has been one of our best ones. The owners pulled out all the stops and nothing was too much for them. They bought a hoist and new harnesses to enable more children to experience the walls and experience it they did. We had the full range of climbers from the ones with low muscle tone in the SEND harness. This completely enclosed the child so that they could experience the sensation of 'climbing' high the see the sensory colours of the bright walls. Then there were the harnesses that the toddlers and the ones that needed a little bit more additional support. These harnesses went over the shoulders and meant that the line was clipped on higher up to give a more secure centre of balance. It meant that parents could support their child to climb but if they chose they were still able to climb themselves. The final group had the harness around the legs and waist. These were the most flexible climbers and the ones that needed the least assistance. The majority of these were climbing by themselves by the end of their session and even the most nervous beat their initial climbing heights from the start to the end of their climb.  

Clip n Climb also brought in extra staff and trainers from other centres and they also managed to feed all the families with extremely gorgeous home cooked food.  As soon as the food was put out, it disappeared it was that popular! There was no time pressures for the families and the staff worked extra hard to make sure that we were all well looked after. I certainly felt like we were in very capable and safe hands and I think this is certainly going to become a regular event for our families.  

If you didn't make it to our event but want to give this a try with your child, I fully recommend this place as they have all the necessary equipment needed to make it a success.  Just give them a call before you go and they'll make sure you are looked after! I've already promised my boy that we'll be back on his next Training Day! 

"Thank you for organising a brilliant day. Jack loved every minute of it. We would never have considered climbing an activity he could take part in and really appreciate little hiccups allowing Jack to have new experiences and such fun doing them."

"Our three kids! Especially my boys with learning disabilities. And hypermobilty. Were really excited about it at first. Got in and weren't shore. And got a bit scared too!. We werent shore they'd take part! But I kept phrasing them! And saying if it didn't matter how far they got! And started clapping whenever they tried. And they loved it. They tried to climb abit higher. Never got to the middle but almost! It was fantastic! They started to laugh and smile! They loved it! And they sister us all too! Just to see the boys have a good try! And have fun. And that they loved it. I'd definitely go again! Just to see them try as hard as they did today. They clearly felt on top of the world and they should. I think with most of the kids it was the same. Hit and miss but all did the most they could and enjoyed themselves! Well done on the organisation of this! And thank you so much. We loved it! X"

"Thank you sooo much little hiccups. I cant thank you all enough for today... callum had an amazing time climbing and seeing him genuinely happy and hearing him laugh is priceless and just makes my heart melt. I was so proud of him and everyone else there today. Memories ill treasure for life 😘💗 xxx"

"Thank u for a brilliant afternoon"
"Thank you, thank you, thank you!!!!! Xx"
"Thanks again for another fantastic afternoon!! We've enjoyed every minute 😘"

"What an amazing afternoon thankyou so much little hiccups for making it possible seeing my own n so many other children and adults conquering fears and climbing the walls was amazing there truly are no limits or barriers stopping our hiccups family xxxxxx well done all ❤❤❤❤"

"Thank you so very much for a fantastic afternoon. One very tired boy who cant stop talking about it."
"Thankyou for a great day out xxxxx"

"Had a great afternoon thank you so much xx"

"Georgia really enjoyed herself!! And there were a couple of ladder like walls Yanni did quite well with - different to the climbing walls they have in Ilkley. Really great, thank you."