Freddie was quite young when we got his first piece of funded equipment. He was under 1 years of age and we were struggling to bath him. I trawled the shops looking for an appropriate chair but nothing was suitable. Freddie wasn’t able to sit up unaided and all of the lay flat chairs that were in the shops were too small for him. I spoke to Freddie’s Occupational Therapist over our problem and she managed to get us a big ergonomic bath chair which was perfect for Freddie.
The chair unfortunately didn’t last long so we had to approach Freddies Occupational Therapist again to ask for something more suitable. She made us an appointment at the local disability and mobility aids center and we took Freddie along to try out a new seat. It was an upright, corner seat that we could strap Freddie into.
Next came a specialist corner seat which helped Freddie to sit up for longer periods of time. It came with a table that allowed Freddie to play with his toys whilst sitting, something he struggled to do when just sitting independently on the floor.
We then received a standing frame from Freddie’s physiotherapist to help him strengthen his legs and improve the strength of his core muscles.
As Freddie continued to grow his pushchair was becoming more unsuitable. He would struggle to stay upright in it and would often just slump over the side. We spoke to Freddies Occupational Therapist about it and she put our name down on the waiting list to visit the wheelchair centre. We weren’t able to get the funding for a specialist pushchair until Freddie turned two so we had to make do until his birthday. Eventually we were given an Alvema Ito.
It was decided just before Freddie’s 2nd birthday that the corner seat was no longer suitable for Freddie. He was getting very big and heavy so we needed something that was more mobile and height adjustable. In July 2012 we took delivery of an R82 Panda seating system. We were able to push Freddie around the house in it and change the height to suit Freddie’s needs. It also reclined so Freddie could sleep in it if he wanted.
Freddie quickly outgrew his standing frame so his physiotherapist looked into getting him a new one. In December we were given a new Leckey frame for Freddie. It was alot more suitable than the first and had a play tray to help keep Freddie occupied whilst he stood up.
In Freddies short life we have made our way through lots of equipment. We have been lucky enough that all the equipment has been given to us without having to push for it too much. But now Freddie is older and in need of more equipment we are finding alot of it isn’t available to us on the NHS.
Seemingly specialist beds and car seats aren’t seen as important equipment so they aren’t funded. To buy a specialist bed for Freddie it will cost us alot of money, it could cost well over £5000. A specialist car seat that has a swivel base to help us get Freddie in and out of the car without damaging our backs could cost us up to £2000.
We have asked if Freddie could have a specialist highchair as his current one is getting a bit small and isn’t really suitable for him. Unfortunately you can only get funding for one type of chair so, as Freddie has his R82 seating system we can’t have anything else and they want us to use that chair to feed him in too. I feel that it’s very important for Freddie to have a separate high chair and play chair. With Freddie having learning difficulties it’s hard to help him understand whats happening and what is expected of him and by having two chairs it allows him to know when it’s food time and when it’s time to play.
It’s not just equipment like this that Freddie needs, it’s also toys. Freddie does struggle a bit with the function of his hands. He has unusual index fingers and adducted thumbs and holds his hands fisted alot of the time. He will rarely hold a toy in them or play with anything that requires picking the object up. Freddies interest in toys is very low and it’s hard to keep his attention on them. One thing he does love though is lights. Which is why we want to provide Freddie with a proper sensory room. He does have a few sensory lights but they are very basic and flimsy. A sensory room can cost alot of money, some lights can cost over £1000 alone. A sensory room would be particularly useful for Freddie during the night time. Freddie doesn’t sleep like he should and, will most nights be awake from 3am onwards and not go back to sleep. Having a relaxing sensory environment would be the perfect place to have Freddie during this time and will hopefully help him relax and go back to sleep, or at least keep him quiet so he doesn’t wake his sister!
When you become a parent to a child with additional needs alot of decisions over equipment are taken out of your hands. You lose the freedom to be able to go down to the shops and purchase what you would like for your child, be it a bed, a chair or a toy. Everything becomes alot more expensive, more than most average families can afford. You find yourself worrying about how you are going to cover costs for items as a basic as a bed. There are several charities set up to help parents fund the cost of specialist equipment but having to approach a charity to help is a hard thing to do.
As a parent you want to be able to support your children, to provide them with everything they need. There is a big part of you that feels like you have failed your child for not being able to provide them with their first bike or suitable toys to help them learn.
I’ve been contemplating for a long time now about fundraising for Freddie. I’ve put it off for such along time but i’ve finally taken the plunge and we hopefully have 2 events coming up in the next few months. The first event is going to be a sponsored walk in fancy dress outfits and the second will be an online auction. All money raised will go into a special bank for Freddie that we can only access when we require something for him.
By fundraising we feel, as Freddie parents, that we are doing our very best to support and provide for him. We will undoubtedly still have to apply to several different charities for help with our ever growing list of equipment but we are putting alot of hard work into the fundraising and will do everything we can to make sure Freddie has every piece of equipment he needs to help him grow and learn as he should.
We have a just giving page set up for Freddie for anyone who wants to sponsor us on our fancy dress charity walk http://www.justgiving.com/Swan-Freddie
Also we are on the look out for items for our online auction so if you can help or know anybody that can please do get in touch.