I'm Sophie, married to Simon and mum to Jeremiah (10), Isaac (8), Malachi (5), Ezekiel (3) and Zechariah (2). Also our 2 little ones in heaven, Eleanor (2005) and Elisha (2011).

Jeremiah has Autism.

Isaac has hypermobility syndrome/Ehlers Danlos type 3 and uses a wheelchair for anything other than very short distances.

Malachi has hypermobility and wears piedro boots to support his ankles

Ezekiel has a cleft palate, hydrocephalus, hypotonia and development delay

Zechariah was born with sepsis and has mild development delay.

Wednesday, 24 October 2012

It's been a while

We've just been plodding along as usual, counting down the days until half term.  I phoned school transport and was told that Isaac is not disabled enough to qualify for free school transport but if I send them letters from Simon's employer (saying he is at work at school run time), my GP (saying that I can't walk 9 miles a day pushing Isaac in the wheelchair and carrying Malachi) and Isaac's paediatrician (saying that he can't walk to school) along with copies of the DLA award and blue badge then they would consider it.  I'm not sure if it's worth it to be honest.  But it's only a few letters and a bit of photocopying says the lady from the school transport office.  Yes, added to the other "only's" that I have to do whenever Isaac needs anything.  So far I have phoned the paediatrician who is on holiday and made an appointment to see the health visitor which we had to cancel because Isaac was poorly.

In the meantime we found out that breakfast club is only 70p per day so now Simon is taking Jeremiah to that every morning and I am taking Isaac on the days he is in and collecting both of them.  So now one of my children is always on time for school.  Isaac now has ear defenders for school to try and block out some of the noise.  He took them to school for the first time today so hopefully he will have a better morning than he has done.

Isaac was in the local paper this week.  A photographer went round to all the reception classes in Somerset and took a photo.  So here it is, 15 happy smiling children, and Isaac in a strop.


And Jeremiah's one from 2 years ago, because I'm having a nostalgic moment


15th October marked the end of baby loss awareness week and as is tradition we lit Eleanor's candle at 7pm for the international wave of light.  I dithered about whether to light 2 candles this year but I couldn't find one or think of an idea to make one that felt right for Elisha so we just lit the one that we usually light.

Isaac finally told me why he didn't like school.  Apparantly it's too noisy so he is now the proud owner of some ear defenders.  So now he is happy although the teacher is having trouble getting him to take them off when she wants to talk to him.  And he is even more unwilling to play with the other children in his class.  According to him, Jeremiah is his best friend and he doesn't need anyone else.  Not sure what Jeremiah thinks about that!

Malachi is at that in between stage, more toddler than baby now and cruising round the furniture.  He has a cold so he is back on his inhaler again.  He has also learnt to take apart disposable nappies so he is back in cloth nappies for the forseeable future.  He doesn't really have the right shape for cloth nappies as he is very short and rather chubby so finding nappies that fit under his trousers is a challenge.  His 9-12 month trousers are a bit long anyway so we can't get away with moving up a size to accomodate his nappy.

Tuesday, 9 October 2012

A conversation with school transport services

The worst part of having a child with EDS is the red tape. I tried for the third time to get Isaac school transport today and it went like this:

No, we can't help you, phone this number, phone that number, then phone another number. No, we don't have any record of you applying before. At his age he should be able to walk 2 miles to school and you are only 1.5 miles away. Well, you could try filling in this long form and submit medical evidence why you need school transport but I doubt you'll get it, he's not disabled enough. Or you could try phoning yet another number tomorrow. He's a wheelchair user, how can he not qualify for school transport. Bangs head against the wall.

Monday, 8 October 2012

One happy Isaac

For the second time this term Isaac went into school happy.  I finally got out of him what has been bothering him at school.  Apparantly it is too loud so I had a chat with the TA and the SENCO and they are going to try and get some ear defenders for him.

In other news, the road is being resurfaced.  Which for us means more delays with the buses.  We were late for school again this morning and I was nearly late picking Jeremiah up.  I am seriously considering learning to drive as I'm so fed up with being late all the time because of the buses.  Also when Isaac turns 5 I will be spending £68 a week on bus fares.

Tomorrow I will be having the day off.  Dropping Jeremiah off at school and then coming home and catching up with various jobs until it's time to pick him up again.

Tuesday, 2 October 2012

Welcome to Holland

If you have a child with special needs, sooner or later someone will send you this story:

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Like many other parents of children with special needs I think it's a nice story when told by someone else who has also ended up in Holland but incredibly insensitive when written on a postcard from Italy.  There are a few songs, stories and poems like this around, some of which I like and some of which I don't.

I really don't like the ones that paint an unrealistic picture of children with special needs.  Children who have physical disabilities are mostly like any other child except they have certain limitations.  Isaac isn't a saint like being who smiles at old ladies and generally looks ill.  He is determined and fiesty.  He says "mummy, can I have ....?" at various things while going round the shops.  In many ways he is like any other 4 year old.

Of course in many other ways he is different from other 4 year olds and we have really been feeling it since he started school.  He is doing 3 mornings at school this week and already he is struggling and it's only Tuesday.  He's not settling very well either but that could be partly to do with his part time hours.