This way up

Christmas

2011-12-27T02:09:00.000-08:00

Happy Christmas everyone. We have enjoyed a very happy traditional family Christmas. In-laws to stay, mountains of food,too much chocolate....
Freddie is delighted with his present; a tricycle. After many years of doggedly trying to teach him to ride a bike I've finally concede ended that he doesn't have the required balance! The tricycle was advertised second hand by another parent at his school at the end of term. he loves it. Now we can all go on family bike rides and he'll be able to go so much further on the trike than he can walk.

Wales

2011-11-01T15:14:00.000-07:00

We've just got back from a lovely half term break in Wales. Rented a cottage in the middle of now where, surounded by mountains, no mobile phone signal :-) Freddie did everything, but we let him off climbing Snowdon! We went on two narrow guage railway train rides, visited castles, went of muddy damp walks and played a lot of Monopoly.

Hello

2011-11-01T15:10:00.000-07:00

Hello, been having a bit of an IT break since the summer. Back now, regular posts resuming!

School prom

2011-07-17T00:16:00.003-07:00

Still no broadband! Thanks BT. I'll have to put up a load of photos when it comes back on. Freddie had his school prom last week. He looked so grown up and dashing. He told us he is James Bond!

Spain

2011-07-14T14:53:00.000-07:00

No posts for a while because we've been on holiday in Spain. We had a fantastic time. Freddie did lots and lots and lots of swimming! We have decided that he is in fact a fish. There are no photos at the moment because BT have managed to kill my broadband and I am connecting via a hook up through my mobile phone. Phones to follow as soon as BT allow.

BAHA crisis not a crisis

2011-07-14T14:51:00.001-07:00

After all the panic over the BAHA, it turned out that despite a GP, Consultant, Surgeon and nurse all sadly poking and proding and concluding that it had fallen out...... it was fine! All he had was a particularly bad infection. BAHA is OK!!

BAHA disaster

2011-05-22T14:20:00.001-07:00

After 3 very successful and uneventful years with Freddie's BAHAs, disaster struck on Friday - one of the abutments has come off leaving a nastily infected hole in his head. A swift drive up to the hospital in Birmingham led to the diagnosis that he might have lost the whole implant. I hope not. It's now badly infected so he's munching his way through antibiotics. The plan is to let it settle down and heal, then they'll operate again and screw in another abutment (if it was just that the came off) or activate the sleeper (spare implant) if the whole thing's come out. All in all not good, and something i could have done without!

Blog holiday over

2011-05-12T10:29:00.000-07:00

The blog holiday is over! I was successfully elected as a District Councillor for North Somerset, Yatton Ward. I'm delighted! It's going to be a very tough time to be in local Government with a lot of spending cuts to manage but I hope that having someone on the Council who really understands the lives of people with disabled children and the services we rely on will help.

Blog holiday

2011-03-03T02:08:00.000-08:00

I am standing in the local council elections on 5th May and since that's going to be taking over my life for the next few months I thought I had better declare a "this way up" blog holiday! I will be back up and posting regularly about Freddie's life after the election. New parents, take heart, it is possible to have a child with Downs Syndrome and stand in a local council election! Life goes on.......

IPSEA facebook page

2011-02-03T10:35:00.001-08:00

I have been busy helping to set up a new page on facebook for IPSEA - Independent Parental Special Education Advice. The page is here www.facebook.com/ipsea.page I work as an advisor on IPSEA's advice line helping parents who are having problems with their children's education. We deal with everything from general enquiries about who should be doing what and who to talk to, to very serious legal cases. The facebook page will help us keep in touch with all our supporters and make it easier to get information out to parents when laws change, new guidance is published or any other issues we think they should know about.

Please do visit and "like" the page to get updates and "share" the link with your friends and any other newsgroups or networks you are on.

www.facebook.com/ipsea.page

Piano

2011-01-16T13:00:00.000-08:00

Just before Christmas Freddie started piano lessons. He's a short video of him playing after only 4 lessons. If you are reading this on the main website you'll have to click on the link above to get to the main blog to see the video

http://www.facebook.com/#!/video/video.php?v=10150155972852542

I'm astonished at how quickly he's picked up the idea of playing. At the moment we're using a book (sadly now out of print) with different animals for different pictures so all he needs to do is follow the pictures; which he does with no trouble. The first thing to work on now is to persuade him to let the other fingers have a go!

DLA consultation

2011-01-11T09:42:00.000-08:00

If you are caring for a child with a disability, please do look at the Government's Disability Living Allowance consultation http://interactive.dwp.gov.uk/disability-living-allowance-reform-public-consultation. I found the online form a nightmare so I've produced this http://www.thiswayup.org/DLA%20consultation%20questions.doc which you can just fill in and email back. It’s not official but they’ve been happily accepting it. You don’t need to answer all the questions. It took me nearly 2 days!! Most people will take one look at the questions and not bother but it’s vitally important that we get in as many responses as we can so even if you only answer one question it would be good.
Note that the consultation says it’s about DLA, but if you read between the lines it’s actually about DLA/direct payments/respite and all the other allowances rolled into one. It also says it’s not about children but there is one question specifically about children!

A small task for this evening! Thank you.

Hearing Aids

2010-12-30T09:21:00.000-08:00

Spent the day up at Birmingham Children's Hospital in audiology having Freddie's hearing aids and hearing checked. No real change from last time, a bit worse in the right, about 40 to 60 dB loss, getting worse at higher frequencies. The good news is that the BAHAs (bone anchored hearing aids) are still correcting everything. The best thing we ever did. No more checks now until end of 2011.

HAPPY CHRISTMAS

2010-12-26T05:31:00.000-08:00

I hope you are all enjoying the Christmas holidays and making the most of the snow. The boys all enjoyed a wonderful snowy white Christmas day yesterday. Christmas is Freddie is always magical - he loves Christmas and starts talking about it in September. We started off our celebrations by taking part in the local Church Nativity play. Freddie was a shepherd again. He tried being a king a few years ago but we ended up with a rather odd nativity with a king following the shepherds around so decided to stick to shepherds!

Freddie in the middle of the shepherds

On Christmas day, after the excitement of opening stockings and eating a huge breakfast we went sledging on Cadbury Hill - again. The snow is now packed into a perfect piste! On the way home we dropped into Claverham Cricket club who thoughtfully open the bar for a few hours. We found Freddie at the bar ordering "boo cisps and cococococ" (blue crisps and coke!)

Once home we opened all the big presents. Freddie was delighted with his gogear MP3 player; he had spent all year borrowing Amber so now he's got his own. Amber Mummy very kindly loaded all Amber's music onto it which he is delighted with.

Freddie with his favorite present

Finally we tucked into a huge Christmas dinner - Freddie ate everything and had seconds!

HAPPY CHRISTMAS!!!

Snow

2010-12-18T13:05:00.000-08:00

What a fun packed snowy day! Snow where we live near the sea is quite rare so we get doubly excited when it happens. Freddie's friends Amber and Tobias and Samuel's friends Max and Keiffer all came round, so what with George too, we had 7 children in the house! We all went sledging for hours. Freddie's great at sledging!

Centre Parcs holiday

2010-12-07T15:27:00.000-08:00

We've just got back from a wonderful week at Centre Parcs - Longleat, with 37 other members of the Bristol Area Downs Syndrome Support group. Amber (Freddie's friend) came with us and we had a brilliant weekend. Everywhere we went we bumped into someone we knew! The whole weekend was triggered by funding that our group got last year from the "aiming high" project. We applied for and got £20K for short breaks for families caring for children with disabilties. Our group spent some of our money on a holiday to Croyde last summer, some on a spa break for mums and the remainder on this holiday.

Lots of photos here

http://www.facebook.com/album.php?aid=335715&id=709112541&l=d6b015d919

Birthday boy 12 today

2010-12-01T12:49:00.000-08:00

Wow, where did the 12 years go? Freddie's had a lovely day. He started off opening his presents in bed; very early! He took a cake in to school which was very well received! He normally goes to an after school club today, but insted, came home for a birthday party with his friends Amber and Tobias and Amber's family. He loved all his presents, especially his collection of James Bond videos and the pop up pirate game (the third we've owned, thy always get broken).

He'll be a very tired boy tomorrow!

Snow

2010-11-30T13:57:00.000-08:00

Yippeee, snow. For some reason snow brings out the child in me. We've had a great time the last few days in all the snow. Freddie loves sledging and can play and enjoy the snow as much as any child. I had a lovely surprise on Saturday. Driving back from Freddie's piano lesson he sat very thoughtfully in the car, then, as we got near to where Amber lives he purposefully put together a sentence. "Mummy go Amber sledging". It was reinforced with signs but it was absolutely clear what he wanted. I slammed the breaks on, turned round and we went to Amber's house to see if she wanted to come out sledging. Freddie was so pleased with himself and it was great to see him enjoy the rewards of communicating what he wanted.

We had a great afternoon all sledging up on Cadbury Hill.

Disability management

2010-11-18T08:03:00.000-08:00

While Freddie’s life carries along merrily, today has been one of those days of managing the seemingly endless bureaucracy that goes with having a disabled child. To put things in context, Freddie is having a great time at the moment. He woke up full of the joys of spring this morning and got his uniform on reasonably quickly, ate his breakfast with no fuss and happily went off to school. Lovely child. So from that point of view, I’ve got no complaints.

However…. I had two things to tackle today; a routine appointment with the Paediatrician and the joys of trying to cancel carer’s allowance. Although Freddie’s health is generally very good, it’s important to have regular medicals to keep on top of things. This was a new Paediatrician. Our usual centre seems to be in a bit of disarray at the moment with one recently retired and one on maternity leave. I think they’re shipping others in from out of area to cope. Anyway, this one was very nice but it takes ages to go through all the medical history with someone who’s not familiar with it. The consultation took about half an hour and we came out with referrals to dermatology (for an odd looking mole), the BAHA people in Birmingham, the Bristol sleep clinic (no known problem there, but apparently they want better sleepers to study!) and a trip to the specialist dentist…… multiplying hospital visits. So that was one morning off work leading to probably 4 more mornings of work.

Against that background I’ve finally managed to scrape together enough employment (fitted in around all these hospital visits!) to earn me enough to lose my entitlement to careers allowance. I’ve been in the careers allowance trap for long enough now and decided it was time to get on with it. It’s a tough one though. Carer’s allowance is worth £53.90 a week and you can earn up to £100 a week (+various deductions). When I took my last contract I knew it was going to take me just over the limit. So, I may be earning more but I’ve taken a heck of a hit. On balance though, I will be marginally better off and I'll certainly find life more interesting (and I'm doing my bit to do something about the national debt!).

Taking a deep gulp, I then spent nearly all afternoon trying to tell the benefits people I’m not eligible anymore. I spent hours on an unanswered helpline and eventually completed an online form which assumed that all people work regular hours for regular employers rather than chaotic hours (to fit round the hospital appointments etc!) with lots of different employers, so heaven knows if that’ll work. I’ll report back.

Birthday party

2010-11-10T08:12:00.000-08:00

We all went to a family birthday party at the weekend in the local village hall. It made me realise how much Freddie's grown up, how wonderful his friends are and how things do get easier. I remember a similar party when he was about 7 when he absconded and we ended up having to call the police! Now he's far more reliable and I'm able to enjoy myself without worrying where he is all the time. His friends are a great help. Because he likes being with them he sees no need to go off and do anything else. He pretty much looked after himself at the party. I did have the bar staff chasing me around at one point as he'd gone to the bar and ordered some crisps and coke - which they'd given him! It was kind, but from a learning perspecive it would have been much better if they'd sent him back to me to get the money.

Fireworks

2010-11-05T15:15:00.000-07:00

Anyone wondering how to manage fireworks with a child with Downs Syndrome? Here's the answer.

If you're looking on the http://www.thiswayup.org/ blog feed you'll have to click on the title above to visit the blog so you can see the photo. Something I never thought I'd see!

Visiting London

2010-11-03T11:21:00.000-07:00

Over half term we went to visit our new flat in London where Richard is going to be working for the next couple of years. Despite having moved house more than 60 times between us (honestly! ex service families) we decided that we love where we live now and the thought of uprooting Freddie after all the effort we had put into getting him settled into such a good school sealed our decision; we are going to stay based in North Somerset and Richard is going to "weekly board" in the flat in London.

We took the flat over a few weeks ago and this was our first visit. It was also the boys first visit to London. Things started well with the discovery that we have a parking space and as we have a motability car, don't have to pay congestion charging. Our arrival was less successful. The contract cleaners had been in and removed the curtains for dry cleaning, leaving exposed floor to ceiling windows. Freddie hates windows! Freddie spent the first hour in the bathroom. He spent the second hour hiding under a duvet and the third hour crawling around on the floor like spiderman!

By the morning he'd come to terms with the windows and we went out to explore London. We went to Tower Bridge then took a boat trip down the river. We saw Parliament square then went up to Leicester Square where we had lunch in Pizza Express followed by a movie.

The next day we went onboard HMS Belfast where Freddie decided to only go DOWN the ladders, which was fine until we got to the bottom where he was perfectly happy to stay (away from those windows?!). In the afternoon we spent £11.25 on 4 day tickets for the Docklands Light Railway and spent the afternoon riding around! Great entertainment, it's like a fairground ride.

Coming back to North Somerset, the boys are shattered, but I'm so proud of how well Freddie managed all the changes and unfamiliar routine.

What goes on in the evenings?

2010-10-21T10:56:00.000-07:00

I thought this evening I'd go back to my original aim for this blog; to give people a view of what it's like having a child with a disability in the family. I thought I'd just write a bit about this evening.

After school Freddie and Samuel went to their childminder as I work on Thursdays. I picked them up at about 5:30 and also collected Freddie's friend Amber on the way. Back at home, Freddie put the music on full blast - Lady Gaga - and it's been blasting away ever since! He and Amber are reconstructing the playmobile house again. I think this is the most rebuilt house in the country. They pretty much sort themselves out and Amber if brilliant at helping Freddie. I have had to help out a few times, but most of the time I've been pottering around doing boring housework and things. Freddie's speach is poor and if he wants to do something he'll ask me rather than ask Amber. We're working on encouraging him to talk at the moment and it can be quite a time consuming process to get even the basic things out! He wanted to get Amber to move so he could reach something and it took quite a while to model what he wanted to say, with Amber pretending not to understand what he wanted until he said it properly; which he can.

Otherwise, I wouldn't think there's much going on in this house that isn't going on anywhere else! Children listening to loud music, older one watching the Simpsons, younger one setting up soldiers, Mum on Facebook ...... Nearly time for a glass of wine :-)

Update on the shoes

2010-10-19T12:33:00.000-07:00

The shoe saga has been resolved! A few weeks ago I posted about my disappointment that Freddie's new orthortist and physio had decided he only needed insoles in his trainers instead of orthotic shoes. My now standard response of snotty letter, followed by "sorry, I was having a bad day, what can we do about this.." phone call did the trick. In fairness, his notes hadn't come down from our last hospital (surprise) so they had no idea of his foot history. The orthotist and physio came back with in a week and phoned me to confirm that he did have all the problems I said he had. Result, he does need the shoes, and insoles. Not only that, but they saw him last Thursday and the shoes were delivered today!

Moral of the story - don't be afraid to question the professionals.

Amsterdam International

2010-10-14T01:34:00.000-07:00

Today I'm going to cheat and pass on someone else's blog. My friends with disabled children will be familiar with Welcome to Holland, which is great but I always felt was a bit Polyannaish. This Mum's written the bit that was missing - the bit about when you're stuck in Amsterdam International! I am sure lots of you will relate to it. http://niederfamily.blogspot.com/2010/10/amsterdam-international.html