Category Archives: down’s syndrome

2014 Ceilidh

21 Plus, a Monmouthshire charity I’m involved with is holding a ceilidh in June.

21 Plus


We are holding our annual ceilidh for the whole family

on Saturday, 14 June 2014 from 5 – 9 pm.

It will again take place at Dingestow Village Hall in Dingestow, Monmouthshire.

There will be a hog roast and the Skirrid Ceilidh Band will be leading the dancing. We will have a licensed bar, sell cakes and hold a raffle.

Tickets are £10 for adults, £4 for children (under 16) and £25 for a family (2 adults and 2 children). The ticket price includes the hog roast.

All proceeds will go to 21 Plus (the local support group for families who have a child with Down’s Syndrome).

Please come along, bring your families, relatives, friends, colleagues and neighbours  and pass on this invitation!

For tickets please contact Victoria Hughes at

Hope to see you there!

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The Archers gets it right

As a parent of a child with Down’s Syndrome (we prefer that term to “Down’s Syndrome child/person”) and occasional Archers listener I was impressed how sensitively the writers handled last week’s storyline involving a couple who are told that the child they are expecting will have Down’s Syndrome.

In particular the way the consultant revealed the results of the tests showing the baby had Down’s was almost a textbook example of how it should be done. Too often, doctors in these situations have out of date attitudes and information and end up traumatising the parents. “You can get rid of it, you know” is not as uncommon a phrase as we’d hope.

Almost, because the consultant could have been a bit warmer and reassuring and because her speeches sounded like she was reading from the Down’s Syndrome Association literature! The latter is hardly a complaint though.

21 Plus – a support group for families with children who have Down’s Syndrome in Monmouthshire & FOD

This post is a shameless plug for the new website of 21 Plus, a support group I’m involved with. If you live in Monmouthshire, neighbouring Welsh counties or the Forest of Dean, have a child with Down’s Syndrome and think you could benefit from sharing experiences with similar families, get in touch with us via the website at


21 Plus - Support group for families who have a child with Down's Syndrome in Monmouth, Monmouthshire & Forest of Dean


Notes from the front: The annual SEN statement review

A friend of ours, aware that we have a child who has a Statement of Special Educational Needs, recently asked us for advice on how to approach the first annual review of the statement for their child. This, with some edits, is what we replied.

Disclaimer: this is not legal advice.

The purpose of the annual review meeting is to review and if necessary re-word an existing statement with the goal of getting your child the support he/she needs. Changes to the statement are to be made in Parts 2  and 3, but it’s really important to be very careful about the precise wording in Part 3 because what is committed to in that part is what is legally binding on the authorities.

Make your goals clear in advance

Try, in advance to make clear with the school’s SENCo what you are trying to achieve at the meeting. You should both be aiming for the same thing. In our experience that didn’t happen at X’s previous school and the SENCo wanted to place X in a special needs unit, while we were committed to mainstream education.

Don’t allow wiggle-room

Watch out for wriggle-room in words like “regular” in the context of visits by a professional. That could mean a visit once a year instead of what you imagined to be several times a term. Specify who does what, how often and for how long. Sounds pedantic but our experience has been that unless Part 3 is very explicit professionals will not work to the spirit of the statement but the letter, providing the minimum that the wording allows them to get away with.

Pay attention to Part 3

Thus, if Part 3 requires a visit “by the Speech and Language department”, your child  may get visits from an unqualified SLT assistant who trains teachers in SLT techniques, not an actual SLT therapist giving one-to-one therapy to your child. So get the statement to specify visits by a qualified therapist who gives therapy directly.

In case you haven’t noticed by now, it’s all about being specific in Part 3!

Sorry to be cynical but the people at the meeting may well take advantage of your naïveté about the process: their aim could be committing to as little expenditure or resources as possible, rather than getting the best outcome for your child. Remember that how they resource what is in Part 3 of the statement is not your problem.

Beware of blanket policies, e.g. “Borsetshire doesn’t do that” – they aren’t allowed and you should make sure they know that you know that.

Get their ducks in a row

All professionals involved with the child, whether attending the meeting or not should provide reports no later than two weeks prior to the meeting. The reports should be sent to each other and to the parents. If you haven’t got a report before the meeting and they only  turn up at the meeting with it, you have the right to request time to read it and postpone the meeting if necessary.

Hold until the right people can come

From our experience, if you have a specific issue that you want addressed, e.g. SLT, make sure the professional that deals with that is attending the meeting.  Again, postpone the meeting until that particular professional is able to attend.

Don’t go on your own

Being a layperson surrounded by a room full of professionals can be intimidating and you may feel more inclined to go with their suggestions against your gut instinct simply because you feel overpowered. Make sure you have your partner or a friend with you at the review meeting.

There is a Code of Conduct that governs all this. Each LEA has a copy on their website.

IPSEA, an independent charity has been really useful, so make use of them if you want more legal info – case law etc. They are at and the specific page about Statements is here.

An exasperating battle for our children’s rights

Every year many parents of children with disabilities in the UK have to play an absurd game with their local education authority. In principle, it is a process to define the special educational needs for their child that puts in a legally binding statement the steps which the authority will take to make provision for those needs.

Providing those services, such as speech and language therapy, is sometimes expensive and the authority will try to avoid providing it, by, for example, not making mention that it is, in theory available. What should be an exercise in providing exactly what the child needs becomes a battle of wits, with parents having to find legal precedents for provision of a particular service and authorities using evasive language to shirk their responsibility to provide for the specific needs of the child. The stress this creates for both parents and children is appalling.

Parents have paid for these services through their council tax. Imagine the uproar if your council used your money to provide some sort of service such as an after school club, say, but then tried to prevent you finding out about it. And not only that, but once you have found out, the council put forward spurious arguments (sometimes involving surreal bureaucratic jargon) to prevent you using it. You then resort to legal advice or expert opinion (for which you have to pay) to establish that the council has to give you access to it, which they ultimately concede.  They know that they have to provide the service but hope that you won’t have the tenacity, wits, money (sometimes) and letter-writing skills to go all the way. You are obliged fight an expensive, stressful and needless battle with council officials whose salaries are paid for by your taxes to get something you are entitled to anyway.

The result is that disabled kids whose parents don’t have the means, financial or otherwise – whom the present government euphemistically refers to as “hard working families”- are deprived of the opportunities that society supposedly affords them as a right.

This is a scandal that needs exposing and which makes a mockery of the present government’s aspirations to build a more caring and inclusive society.

So this report is very welcome.

Down’s art exhibition tour

This BBC report is a really encouraging piece about an art school in Mexico for people with Down’s Syndrome. The quality of the art is very impressive. I want some on my wall!

Also remarkable is the interview with one of the artists, who is clearly bilingual. It’s depressing to think that not so long ago he might have been locked away in an institution from birth.

BBC News Player – Down’s art exhibition tour

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