S: A to Z o Family Rights and Family Lives

We’re happy that “S is for” landed on today’s date as it’s Undiagnosed Children’s Day.

S is for SWAN UK:   Syndromes Without a Name is an initiative of the charity Genetic Alliance UK offering support and information to families of children with undiagnosed genetic conditions. Today is Undiagnosed Children’s Day 2015 – Friday April 24th 2015. Today we are thinking of all the families who are part of this fantastic organisation who are either waiting for a diagnosis for their child or who will never have one.

SWAN is not a condition, it is not a diagnosis and it does not refer to one specific syndrome or condition. In fact, the reason that many children remain undiagnosed is because it is highly likely that they have a very rare syndrome or condition.

Swan is the closest and only term to describe my child without reeling off a list of symptoms (or saying undiagnosed, which is meaningless.” (SWAN UK Member)

S - A to Z of Family Lives and Family RightsWhat else is S for?

S is for Sleep:  We may be feeling sleepy and nodding off during the after lunch slot at the very dull conference and losing the battle to keep our eyes open.

Or we are sleep deprived due to having been up since the very early hours of the morning with a child bouncing off the walls or because we have been giving medication, and turning a child with complex health needs throughout the night. Sleep is essential and without it our stress increases, our resilience drops, and we can’t function.

S is for social worker:  Pity the social worker. At a time of cuts and when we dread another assessment social workers are often not in our list of favourite people. We know that most social workers entered the profession because they really feel passionate and want to make a difference. We also know that most still feel that way. We are, however, regularly hearing stories of direct payments or our short breaks being reduced and the social worker is the one that is making the assessment and taking it to panel. If we don’t blame the social worker who do we blame instead?

S is for Short Breaks:  There seemed to be a lot of talk about short breaks a few years ago when there was money in the system. The last Government introduced Aiming High which allowed organisations and services to include disabled children and young people in out of school clubs, leisure activities, and there was something called DCATCH (Disabled Childrens Access To Childcare) which now feels like a distant memory. Some local authorities even built disabled friendly properties or a caravan and rented them out to local families. Those were the days that were plentiful.   Now, we are hearing that short break services are being cut left right and centre.

S is for SEN – Special Educational Needs:  Before, we were all trying to understand the educational maze of getting the right statement and making sure that schools met our young people’s educational needs. Now, statements are transferring to an Education, Health and Care Plans so this is something else to confuse us.   This all needs to happen by April 2018. One of the biggest stresses we face is around making sure our kid’s educational needs are met whether they are in a mainstream or special school. This can drive us to our limits and can take over our lives. We become the enemy and difficult to work with. We are labelled as being uncooperative, angry, parents who are fighting and in battle. When it works it works wonderfully. We all want our kids to be happy – happy kids learn more, make friends, and enjoy their education.

Sun, Sandcastles and Sea

The Asplands

S is for Sun, Sea and Sandcastles:  For someone who lives in the centre of the country between Bridlington and Blackpool the sea is a place we rarely go to. I am envious of those friends who are able to head for a picnic on the beach after school and the memories of sand between my kids toes, sand in my kids underwear, their shoes, their mouths, in the car, and of course all over the food bag. Whilst feeling the sun and all that Vitamin D whilst the kids build sandcastles. Take me to the beach!

S is for SocIal Isolation:  families with disabled children just don’t fit in. It’s not just our kids that struggle to be really included. It is a whole family thing. Our kids don’t get invited to birthday parties, and neither do we!   Families can isolate themselves and don’t ask for help. We often feel our immediate family don’t understand and so we spend less time with them. Angry that they don’t know and don’t ask what we need, that they don’t listen to us or leave us on our own to swim against the tide.

Nearly three quarters of families with disabled children have experienced anxiety, depression, isolation or family breakdown, according to research by Contact a Family.

What we need is families to come together – to join in and support one another. There is no money left to have new “services” to meet the needs of families – we are the ones here for the duration and to make sure that our families are feeling positive, getting out and about, and leading purposeful lives.

S is for Shit:  There is nothing like having a good swear and a bit of a rant and a rave. A bit of stomping around the house and cursing every god damn professional that ever dared to work with us.   It can sometimes do us good! But it leaves everyone else then feels pretty bad in the house!

Lastly S is for Support. Where would we be without the support groups, the parent forums, other parents we meet on our journey, our family and our friends who really, truly understand us?   It is nearly impossible to do the journey on our own. Good support is worth its weight in gold!

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BuT Site Admin

Debs is one of the co-founders and Directors of Bringing Us Together. She is mum to three child with a variety of SEND and has a great husband.

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