Saturday, 26 June 2010

This morning I woke up with a memory of Seth when he was a baby. I used to lie him on the sofa (there wasn't any risk that he would roll off) and dangle toys over him. I could never let him simply lie there, I always needed to try to stimulate him. But he never responded to them, never reached out to them and at the time I didn't understand why.

I'm not at all crafty so it's been a challenge but I wanted to create something that would help Seth understand his week. One idea I read about was to photo his activities and show them the correct one for each day. But we don't know how his sight works and if he would 'see' the pictures. I've done it anyway. and I've stuck them to card with the letter for each day of the week stenciled on it. I've then made each letter a different texture and colour. I'm going to stick them on his wall by his bed, in reach. and each morning I can show him the photo and let him feel the letter, for that day.

My mum bought Seth a present this week. It was a plaque to hang in his room. It says "the greatest pleasure in life is doing what people say you cannot do". Its a great plaque. I've been carefully stencilling out letters and sticking different fabric to card and I have such ambition for these bits of card but I don't actually believe he'll ever look at the photos or reach out to feel those letters. I'm still doing it though.

Thursday, 17 June 2010

Simply magical

Last night when I put Seth to bed he looked right at me, stretched out his arm and raised his hand. Every night I wave 'night night' and very, very occasionally he waves back and when he does it is simply magical.

Friday, 11 June 2010

Things I've discovered

This is an unconnected collection of things I've discovered (at least that I can remember right now):

Netmums website has a Special Needs area in their Advice & Support section. It has a directory of national organisations plus you can search within your town/postcode.

A really great book I bought is 'Small Steps Forward - Using games and activities to help pre-school child with special needs' by Sarah Newman. It goes through the various stages of development and, as the title suggests, gives games and activities for each. I've found it great to dip in and out of.

If you haven't had Speech & Language therapy for 6 months you are entitle to apply for a £500 voucher from the charity Cerebra. We applied because I hadn't found the community offering at all helpful. The voucher comes with a list of therapists in your area and I can't recommend Louise Bridgens enough. Although the voucher has been used up we have learnt communication tools that we can continue to use and Seth really enjoyed the sessions.

I was looking for recipes that would help to alleviate stress, insomnia and reduced energy levels and came across Good Mood Food which lists foods that are good for different conditions, and Food and Mental Health which has tasty looking recipes.

Tuesday, 8 June 2010

Dealing with the experts

We have no idea what to expect from the future. At every consultant appointment we have dire predictions; Seth will be physically and mentally disabled..... he might never walk.... he might never talk.... he will reach a point when his brain is unable to develop any further...we were even shown his brain scan to drum home the terrible extent of the damage. At the latest hospital assessment strangers spent less than an hour with Seth and then we were handed a report which told us at what level his cognitive, speech & language and physical development was at. According to them nothing much has improved since his previous assessment when he was just a year old (and at that point he was months and months behind), and it's possible that he will soon 'plateau'.

But here's what I know. He can walk a few steps(if supported) and his unsupported sitting is improving. He can totally understand what I'm saying to him and is trying to speak and sign. He does new things every day. He struggles with everything but he achieves so much. Whether the experts are right or wrong makes no real difference. Seth will do whatever he can and we can only do everything we can to support and encourage his continuing development.

Sunday, 6 June 2010

Getting access to appropriate childcare

Today has been a good day. Seth goes to a mainstream nursery two days a week and the nursery has been fantastic. But he needs a lot of extra support which I feel they've been struggling to provide and so I've been trying to get the LEA to let him start preschool at the local special needs school this September even though he won't yet be 3 years old. Whilst I haven't been successful at that (he'll start in January) they have agreed to pay 15 hours of one to one care whilst he attends his nursery. And it will start in July (the education office will pay term time and SENCO will pay in the holidays). What a result! What helped was the following extract of a report produced in December 2009 by the Council for Disabled Children, for the Department for Children, Schools and Families. The report is titled Disabled Children's Access to Childcare. Information for local authorities. Another mum in a similar situation found it and sent it to me. Thanks Vania!

From this report:

'The Childcare Act (2006) imposes a duty on local authorities to secure

provision of childcare sufficient to meet the requirements of all parents in

their area who wish to take up, or remain in work, or to undertake education

or training that may lead to work. Section 6 specifically requires local

authorities to secure childcare provision for disabled children up to the age of

18. In this context, childcare must be ‘sufficient’ in terms of the number of

places, affordability, and appropriateness. In keeping with other activity,

local authorities are advised to undertake development work in partnership

with people who use the services that are provided. A duty to improve

information for families with disabled children about childcare options

available in their area and about financial help is also embedded within new

duties to provide information, advice and assistance set out in the Childcare


Saturday, 5 June 2010

and so I begin

Seth wasn't breathing when he was born after a prolonged birth and having shoulder dystocia. He then spent the next 10 days in the special care baby unit. At the time it seemed forever, but looking back I'm amazed he came home so quickly but we attribute it to his 'fighting spirit'. I have since been advised that it is likely that I had a virus just before I went into labour which passed to Seth. This weakened him and he wasn't getting sufficient oxygen throughout the labour. The shoulder dystocia, and the several minutes this deprived him of oxygen, was just the last straw for him.

When Seth was 3 months old we were told that he had brain damage and that he was very likely to have severe developmental problems. He's now 2 and a half.

I'm writing this blog for several reasons. To document what we've been through, and will continue to go through. To scream out my frustrations and to celebrate achievements. And to hopefully be a resource for other parents who are going through a similar experience.