Exchange

When I was at school it was common to have a few foreign exchange students join us for a week or two. They seemed so exotic. Their clothes were brighter, speech eccentric, even their mannerisms seemed strange and new.

I was never lucky enough to host one of these fascinating creatures, but recently have been enjoying a cultural exchange of my own.

Imagine being air-dropped in a foreign country. Totally fluent, you just fall out of the sky one day. You’re articulate, the locals treat you as one of their own. They assume you understand everything, not just the language but also cultural jokes and idioms. Facial expressions seem strange and don’t always equate to those you saw back home. Gestures you knew to mean particular things make little sense.

The initially friendly residents of this new state become short tempered with you, assuming you are ignoring them, or being rude and difficult. As well as this, all colours seem much brighter, and the volume of everything has been turned up to the very edge of bearable. Textures seem more pronounced, clothes rougher, trees pricklier and worst of all – smells are much smellier.

This is the closest I can come to imagining the world my bright, witty 15-year-old son with Asperger syndrome inhabits. I can tell you now that if I was living with that every day I would be crankier, more tired and have meltdowns on a regular basis. Wouldn’t anyone?

The family he was airdropped into was noisy, opinionated and busy. Oh, and blessed with a permanently sarcastic mother.

I had limited experience with classic autism through my work as a speech therapist – so never suspected my son could be on the spectrum. He was caring, cuddly and very verbal, fond of long complex words; this was not what autism looked like. Being busy with two other children, one of whom had significant special needs, I was quite short-tempered. This boy who didn’t listen properly, willfully misunderstood obvious situations and took everything literally.

I’m known for being perceptive, caring and empathetic (modest too!). In moments of glorious parenting these graces were not extended to the boy.

I could not believe he could not follow simple commands. ‘Your ears are big enough, use them.’ He used multisyllabic words in conversation, but would then ask for explanations of simpler words. ‘Of course you understand it,’ said the ever-loving mother. As for the ‘tantrums’ we thought he was putting them on.

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The day I saw him practicing facial expressions, I began to wonder. My guide into this new country was Tony Atwood. As I read The Complete Guide to Asperger’s Syndrome the scales fell from my eyes (metaphorically speaking). It became my anthropological guide. Chapter after chapter, another apology to my poor boy.

Attempting to understand his autism has included unpicking everything I perceived and understood to be normal. Things I assumed were right are just cultural or societal, not inherently correct.

I’ll give you an example. Someone recently told me that a member of their church was autistic and non-verbal. The church was very accepting of him even though ‘he always wears a hat, won’t take it off – and of course you can’t wear hats in church.’

I nearly choked on my tea. Who or what decided that wearing a hat in church was wrong? GOD?! This, my friends, is a cultural, not ‘normal’ expectation.

Presumably, our culture has this ‘normal’ expectation too, which allows us to happily go about our lives feeling comfortable and reassured. Now, like it or not, my son is going to have to learn some of these rules to ease his way into society, but actually as a society perhaps it’s us that need to make some adjustments of our own.

Look at our own culture. We live on a small island with a rich literary history. Fond of quotes and metaphors, big on small talk and oblique passive aggressive hints. How would anybody on cultural exchange be expected to know that the correct answer to, ‘does anybody want this last potato?’ will always be ‘no’? Why would anybody peel their eyes and if they did, how would that help them to see better? If somebody looks affronted but says they are ’just fine’, why are they angry if you switch topics?

The English place a high value on social conformity, and are just waiting to be embarrassed, hard if you are wearing the wrong clothes, tapping, flapping or smelling the items in shops.

The boy was reluctant to wear coats. I have taken ages to get my head around this. I am a chilly mortal, and have worn gloves in June before now. He, however, is not me. Also, he has sensory processing disorder. I was astonished to learn that this is really common in autism spectrum disorder (ASD). So, perhaps I needed to look at the fact that he would happily wear a hoodie. A hoodie is, after all, a coat by another name.

Wasn’t he grateful when I bought him two pairs of new jeans as he’d asked? ‘One just the same and one a different colour and cut, just to make a change,’ I assured him. ‘The horror in his eyes as I realised – rookie mistake on my part – that for many people with ASD, a change will NEVER be as good as a rest.

So, as I prepare my boy for transitioning into the wider world, where going shoeless and wearing a 4-year-old hoodie, which only reaches his elbows is frowned on, he also shows me that so many things I thought were important, are really just part of my culture. It is, indeed, possible to wear a duvet outside to keep you warm. Do this in public and the locals will stare at you. Is the staring more uncomfortable than wearing an extra layer? That’s your choice.

I’ve learnt to hold clothes to my cheek before buying, and laugh at idioms. We journey through together, picking through social etiquette, deciphering the most important rules to save, to keep the peace, while trying to keep it real.

 

First published on My Family our Needs as “Unpicking Everything That’s Normal”

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Rear Window

In which the state intervenes in the parenting process,but fails to offer any sense of direction.

Imagine this. A bright room, full of children and toys. A one to one adult to child ratio. Music. Paint. Glitter. Lovely.

At the rear of the room a large mirror. I am sitting invisibly on the other side. It’s dark. There are a lot of other parents of various shapes and sizes I’ve never met before. I can see Pearl, she can’t see me. I can’t help her. I can’t touch her.

For an hour and a half adults neither I nor Pearl know, interact with her and the other children, in a variety of ways. They play, they question and touch her. They also occasionally share knowing glances with each other. I have 18 months of experience of what Pearl can or can’t do, and how best to help. I can see through the glass when she has not understood, even see when biscuits are being given out and Pearl is asked “Do you want a biscuit?”, “eh” (yes) the reply. She is asked again,replies again.The TA looks exasperated and asks again. Finally the Occupational Therapist who was looking at another child’s hand control intervenes  “Pearl said yes”.  A beat. “Well I can’t understand what she is saying”replies the TA-who disappears mysteriously in the weeks to come. I sit on the other side of the glass, invisible and shrinking into myself. The parents of children with Down’s Syndrome have formed a group, two other parents who have loud opinions on everything are holding forth in a corner. I am slowly reducing in size, wanting to pound the window, pound the TA’s head, feeling utterly disempowered.

This may sound to you, gentle reader, like a hellish dystopian future where the state judges, you, your child and your parenting. It is in fact The Child Development Centre.

As Pearl’s difficulties became more pronounced, and as the Professionals utterly failed to recognise what a beauty and genius she was, we had somehow accessed an open play session at the CDC. We arrived once a week to play with the children, have access to therapy services to ask questions, and chat.

It was fun. Pearl and I were speedily fast tracked into the CDC proper, which is where you find us. Fun and soft observational assessment were quickly replaced by standardised tests,sessions with all the therapists and a growing sense of desperation. I have since found out that the children who attended were thought to be the ‘worst’ in the county. The one redeeming feature for me was the presence of our amazing physio, who continued to provide appropriate exercises, useful suggestions, and spoke to me like an equal. Apart from this I’m not sure what the CDC was for. I had briefly thought that Pearl would receive the golden “early intervention”that would cure her and get her back on track to join her peers, but as the months went on this seemed less and less likely.

What did I gain from this early intervention then?  Well I found out about Disability Living Allowance. Although there were in session, two specialist TA’s a Special Needs Teacher, an Occupational Therapist, a Speech Therapist-the person who told me about this was a parent behind the mirror. I met a ridiculous continence nurse,  who came to give us everyday advise on potty training, and seemed peeved, when a few of us explained that we did not see it as a priority as our children could not walk, talk or sit up on a chair let alone a potty. Later it was another parent who told me that we would be eligible for nappies-not mentioned by the continence nurse. Nobody would advise me on what would happen to Pearl as far as nursery or school was concerned-because it was not their decision. In the end another rear window parent told me about a School for Parents  in the adjoining county, which Pearl eventually went to before being accepted into the attached school.

In a sense then I did learn something about Special Needs Parenting. Firstly that no one would tell you anything, that you would have to find out for yourself. That other Special Parents could offer incredible support and point you towards resources. That some parents operate a kind of reverse competitiveness “oh she sleeps through the night, lucky you, mine doesn’t sleep AND has fits AND is autistic AND has reflux AND… but she did start walking at 18 months so I expect yours will too” Avoid these parents at all costs. In retrospect I can see this was a coping mechanism, but never let someone else’s coping mechanism interfere with yours.  Just don’t. Hopefully these parents found their tribe. I found mine and met some parents whose coping mechanisms involved coffee, cake and dark humour. I also met our current Paediatrician who is just wonderful, got Pearl and us, and begins every report with “what a delight it was to see Pearl in clinic today”.

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So Child Development Centre Professionals and your ilk, what would I say to you?

Don’t become overexcited by the assessment process and forget the child.

Don’t congratulate yourselves on providing “early intervention” if the parents don’t know the purpose or see the outcomes you are working towards.

Use your common sense about human interactions, introduce a group of parents to each other before putting them in a darkened room together, perhaps use this time to lead a group looking at resources or an introduction to Makaton.

Remember that in these early stages many parents will be in denial. Others will be overwhelmed. Do not assume that they will take everything in. Tell them your plans.Tell them again. Tell them again. Write it down. Put it in a handout.

Make sure your TA’s like children.

Explain to each parent why their child is in the group and what you hope to achieve. For example “because they are struggling in some areas we will assess and give you ideas to help at home. We aim to put together information that will form the basis of an individual plan to help them on the educational setting, we want to involve you every step of the way and help you decide what kind of a plan and setting would be most appropriate for your child”

Check that parents know all about support available, do they have a social worker? Do they receive  the relevant benefits? Are they accessing hydro therapy?  Do they have appropriate seating,  adaptations?  Do not EVER for one minute assume that these things are already in place.

Do not forget, DO NOT EVER FORGET, that parents can see EVERYTHING through that mirror. They can see if you are exasperated with their child, they can see if their child doesn’t like you. They can see and hear if you are talking over their child and ignoring them. Treat watching parents like you would an Ofsted inspector. Show them your working, planning and best practice, and then do it again the next week, and the week after that, and keep right on doing it. These parents are your partners.These children deserve it.

 

Outdoor Activities to Get Kids Out of the House This Summer — Kids Gallore

Reblogged from kids gallore.

Pearl is an outdoor girl-have wheels will travel.

Her school is amazingly awesome at providing her with astonishing things to do.

There is a reason I was not a special needs teacher. I have no ideas.Unsurprisingly,in the holidays she is not keen on sitting quietly beside me while I read for 6 weeks.

Fortunately I have just discovered http://www.kidsgallore.com and found this nifty little blog. Full of ideas which can be easily adapted for a wobbly girl I particularly like ice eggs.

If like me the summer holidays seem slightly terrifying have a look!

 

Craft With Seashells Seashells make a great craft because they are inexpensive (or free) and the options are endless. Your tots can paint them, string them, or stack them. The only thing needed is some glue and a little creativity! Make Designs With Body Paint No need to head to the fair; have fun at […]

via Outdoor Activities to Get Kids Out of the House This Summer — Kids Gallore

Echoes

In which the past though a foreign country, suddenly hijacks me on the Millennium Bridge.

There was a road that led home from my school, a long endless road it seemed to me, although I was much smaller, and my legs much shorter. I walked home down this road every day from the ages of 5 ’til 18, often twice a day when I went home for lunch.

I remember small girls thoughts inside my head. Would I always be walking here?  Did the Jane of yesterday and the Jane of tomorrow walk along here at the same time as me?  Could I one day bump into myself?  ( I was a solitary bookish child).

I recalled this when I hijacked a works trip to London with Father of Pearl.  London was so close to my Essex home, that school trips, gallery visits and teenage forays all started at Liverpool Street station. F o P dashed off to his meeting while I moseyed over the millennium bridge to catch a tube to the V & A.  I found myself face to face with St Pauls, and wondered if a primary aged Jane crept around the whispering gallery, awed, excited, nervous.

I stride, child free and grinning from ear to ear over the Millennium bridge. Briefly I was taken aback and wondered if small girl Jane would believe the world of wheelchairs, special schools and endless fights she would grow up into. Before  I had a chance to feel the sad longing for a ‘normal’ life I remembered.

I remembered the quiet serious, bookish child, who struggled to fit in. The girl who was concerned to keep the peace so her poorly Daddy wasn’t worried into hospital with an asthma attack. The teenager who always wore the wrong clothes, bought at the wrong shops and who was declared” the frumpiest girl in the school” (oh how we laughed) The sixth former who on a trip to this very London threw up in Covent Garden (something I ate?  Nerves? I’ll never know) which triggered a two year battle with an eating disorder which seemed would make her fade away.

And then I think of my ‘non typical ‘ life the profession I had to give up, the hospital appointments, statement reviews and filing cabinets of reports. The tired days the worried nights, and I catch myself.

I’m happy (and well medicated) confident, loved and in love, with life my jumbley, surprising, unexpected children, my fabulous Northern powerhouse of a husband, with this London – and with myself. Truly. And I remember that the solitary, serious Jane always had a huge capacity to love and was always loved in return.

So unexpected though my life has been would I change it? Well some days, yes. On the mornings I wake dreaming Pearl has started to speak I will always feel an aching and a longing.

I bend down and whisper to the skipping infant aged Jane ” it’s going to be alright”.

Saturday Siblings

A big thank you to the first born.

Someone here has been feeling a little left out of this blog.

In the blogosphere she is “The Glory” and glorious she undoubtedly is. Unfortunately (!) for her she is neurotypical, independent, helpful and as such doesn’t get much space on here.

So a quick thank you would appear to be in order.

Thank your letting me try out my parenting skills on you. I remember how I shook when I gave you your first bath-I was so afraid I’d break you!

Thank you for bringing Bad Lucy into our lives-I’m afraid she made us laugh lots.. and yes we did know it was you that did those things.

Thank you for growing into such a fabulous person, I’ve been scared of teenagers since I was one, you however are splendid, stylish, clever and witty and HAVE GREAT HAIR-you really do-so don’t ask again!

You show such maturity in your outlook and thinking, you are working so hard academically and I know you are struggling with social anxiety and depression. If I could wave a wand and take it away I would, but I am here and I have tea and cake.

Glorious, glorious Glory I love you, I ‘m sorry family life can be so tricky, and sometimes you get shunted to one side but you and we will be OK ‘cos we have each other and a tonne of love, kindness and humour (oh and video games).

Thank you for growing into a friend, but always remember I’m The Mummy. So there.

 

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Balance.

I had perceptions of special needs parents before I became one.  So strong, so calm.

Genetically programmed to be fairly pragmatic about life, I generally trot along on an even keel with the help of Citalopram and HRT (no I’m not that old, yes it was early).

Apart from having a constant obsession with Pearl’s bowel habits (possibly tmi-let’s just say for her own dignity that chronic constipation is a thing for girls like Pearl and it’s horrible) it’s fair to say our life has rebalanced to a new abnormal, normal.

True, The Glory asks me 100 times a day if her hair is alright, but she is 17.

Also Rab told me he saw a man walking a tortoise on the way to school yesterday, and although I wondered if I was dreaming, I am prepared to believe him.  He is on the spectrum and honesty is kind of his thing.

When Rab was out of school for 11 months having meltdowns and suicidal ideation (more of this in a future blog) our abnormal normal was shaken quite badly. We found the right school, he settled in, we picked ourselves, dusted ourselves off and…well started all over again.

During a regular appointment The Orthopaedic Surgeon blithely mentioned “keeping Pearl on her feet for as long as possible”.  I didn’t actually realise growth and development may lead to a future decrease in mobility.  I was thrown off course but again recalibrated.

Parents and carers of children with physical, medical and learning difficulties are among the most emotionally resilient people I know. Have to be.  We live in the moment, we really do not know what tomorrow may bring.  I took part in a Study  by the local University run by the lovely Dr Katherine Runswick Cole.  Investigating how parents of children with additional needs developed emotional resilience in their offspring, it was very interesting.  First question, “what helps you as parent maintain a sense of yourself when parenting a child with additional needs?”.  Deep thought on my part, “Having my hair cut at Toni & Guy”.  Truly.  Bless Katherine.  As we chatted over coffee later it transpired that she too had a child with additional needs.  What did she do to maintain her sense of self?  Went to Uni got a degree and followed it with a Doctorate.  Hmm.  Hidden shallows-that’s me.

Emotional reliance is essential to us as a family and I feel is an absolute prerequisite for children to develop good mental health.  Pearl has it in spades-she came with it.  The other two, have had to develop it as well.

Thus far frankly, a long preamble about the thing that nearly broke me.

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My washing machine.

Pearl drools, constantly.  She is doubly incontinent.  Hate that phrase.  Prefer “working towards continence”.  As a result I do a LOT of washing.  Three loads a day at least, sometimes six.  Care for the Family suggests that bringing up a disabled child costs significantly more than bringing up a ‘typical’ one.  In our family that money goes on washing machines. (Oh and the Toni & Guy bill).  We average a new one every two years.

Fortunately we have a wonderful local family firm who fix and sell machines.  Bob has come out on many an occasion to fix an ailing washer and before now to “just get me any model and plumb it in before this evening please”

Gentle Reader, I can endure bad medical news, I can fight local authorities, I can speak to MPs, I can even leave the house looking like a reasonable approximation of a human being, but remove my washing machine and I am a broken woman. I wish I was joking.

Last week I was working on some admin when the washer started making an odd noise.  An error code appeared.  I googled and fixed and ran another programme . It worked.  Then it didn’t work, then it locked itself with 8kg of wet washing inside.  I may have cried.  Bob arrived  (I have him on speed dial) it worked.  Bob left  .It stopped working.  It carried on glitching for two days and then, as I was about to phone the manufacturer, spontaneously healed itself.  Clearly a software issue, said Mr PJ, Bob agreed.  I suspect it was possessed.

I began to loose all sense of reason.  The feelings I usually bat away “I can’t do this””I’m a rubbish mother/wife/human being”, “I’ll just run away and join the circus” (my back up plan incidentally, along with two friends,we have names and acts already chosen). Feelings which would more reasonably be linked to having two children with individual needs and one sitting AS levels, all became attached to the washing machine. It is ridiculous, I know it’s ridiculous.

Did you know when the ravens leave the Tower of London it will fall down?  True Story.  In our house when the washing machine breaks down the family crumbles.  More accurately I go under and try to drag everyone down with me.  I am considering having a plumbed in back up washing machine.  We may have to build an extension, but it would be worth it surely?

I remind myself that before the advent of Pearl I had a life, skills, a degree, a Profession for goodness sake.

It has all come down to this. My good mental health depends on good hair and a working washing machine.

Hidden shallows, my friends, hidden shallows.

PS. If I’m alone in this, keep it to yourselves or the next blog will be from the Big Top.

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DNA

As somebody with a very fine sense of my own importance, not many of you who know me will be unaware that I recently visited Parliament.

Rab was convinced that I was going to take over the running of the country.  While I am both bossy and opinionated, I was educated at a Comprehensive so lack the prerequisite background of most of our current Parliamentarians.

The Glory had suggested something altogether more anarchic, but as I believe in democracy not revolution I was not about to comply.

The present Houses of Parliament were built in the 19th century, there has been a Palace of Westminster on the spot since the 11th, and the buildings have been used for meetings of law makers for at least 500 years.  There are places which have come to symbolise London, and this is one of them.  Despite its presence on tea towels and the news, familiarity has not bred contempt in my case.  I am always surprised by how architecturally beautiful it is. The stone is golden and it glows.

There are three things I feel absolutely passionately about, Science, Politics and Pearl (not necessarily in that order).

In my mind everything in life is about Science. How the sun rises, how we carry information genetically from one generation to another, even our washing powder, all science.  As long as people remain curious there will be scientific discoveries.  We will never classify, describe, collate everything. Science is infinite and has infinite possibilities.

Politics, similarly.  Politics is everywhere.  Not just how we vote, but how we structure society, how we spend money, what we as society place value on, it is all politics.  Whatever your opinion on the current bunch of movers and shakers we are a very fortunate country.  Thank goodness for democracy and universal suffrage.

As for Pearl, well in my life everything is about Pearl.  Every waking thought, every sleeping dream is related to one small girl.  Has she had her meds?   Will she remain fit free?  How will her muscles age?   Will she ever talk?  My life is Pearlescent.

Imagine my delight when I was invited with a group of SWAN bloggers and area reps, to combine a day of science, politics and Pearl. What could be more perfect?  Oh and I got to meet lots of faces I have only seen on-line, and was allowed a day trip to the Big Smoke into the bargain.

An All Party Parliamentary Group is an informal cross party group of Members of Parliament.  It has no status within Parliament, and is several stages away from the statute process.It is actually one of the bread and butter workings of Parliament that our politicians get involved with regularly.  APPG is effectively a committee meeting.  Non partisan, it raises awareness of issues, educates those who take part and promotes cross party working.

This particular APPG is The All Party Parliamentary Group on Rare and Undiagnosed Conditions.  It met to discuss (with geneticists, medics, scientists, pharmaceutical representatives and SWAN parents) what we do with some of the new abilities we have to decipher the genome. Is diagnosis always possible?  (no) Is it always a good thing?  (largely yes).  How do parents feel about it?  (varies).  How do professionals handle giving the news?  (meh).   Who helps the parents?  (why SWAN UK of course!).  Many parents had been involved in information giving and discussion in previous meetings.  This was an opportunity for the report that followed to be shared with everyone involved.

The meeting was ably chaired by Ben Howlett MP for Bath, who also managed to press gang George Freeman Minister of Life Sciences at the Department of Health into speaking.   Wonderfully both had a very able grasp of the issues, as did all the other speakers.  Sarah Oakes mother of Joel spoke clearly and informatively about her experience of diagnosis, resonating strongly with our experiences as a family who have taken part in the DDD study.  Read what she had to say here http://www.undiagnosed.org.uk/news/newsandevents/joel

Alistair Kent from Genetic Alliance  reminded everyone that the parents,child and families of the study need to be forefront of the process, no matter how exciting the science.

George Freeman proposed a future where NICE  (how we decide what is prescribable to who) guidelines may be relaxed to allow drug trials of relevant drugs to those with genetic or undiagnosed conditions.  As a parent it felt very inclusive and collaboratory.

We all watched Renata Blower’s brilliant video about professionals working in partnership with parents you can watch it here : http://www.buff.ly/1s4tQGp

Of course what you really want to know is was there cake?  Indeed and amazing canapés. Also wine,which in my role as a taxpayer I felt I should try on your behalf.

My MP David Rutley, graciously responded to my invitation and came,and has subsequently been informed (!) by me of some of the difficulties we’ve experienced,and how they are likely to effect his other constituents.  (He also recommended some of the sausages,which I was being far too polite to consume).

So how did I find the experience (the Reception rather than the sausages,which were incidentally delicious).  It was immensely heartening to see cross parliamentary working, to be taken seriously by professionals and politicians, and to hear that they often want to do away with bureaucracy as much as we do.  I  can only hope that young politicians rising up the ranks such as Ben Howlett, will be able to ensure that Parliamentary process remains relevant and not unnecessarily bogged down in historical red tape.  We all want a government run by the people for the people, and that is what our Parliamentary representatives should be, people who stand up for their constituents whatever the political persuasion.

So what is the outcome of the APPG what has it achieved?  The report is excellent,and a resource for patient,parent and professionals alike.There are also amazing pictures of beautiful rare and undiagnosed individuals along with their experiences take a look.  Hopefully it should give some guidelines on how to apply some amazing scientific advances.

“Genome sequencing continues to become quicker and cheaper with every passing week and the NHS must take advantage of the clinical benefits that will arise in parallel.  However, as it does so,the real people behind the data must not be forgotten. For families who receive a genetic diagnosis, it’s not the end of the road; they still care for a child with complex medical needs every day.  By implementing the recommendations in this report the journey for families accessing genome sequencing will be smoother and provide the care that these families really need”
Undiagnosed.  Genetic Conditions and the Impact of Genome Sequencing.  2016

As a parent I feel hopeful about this.

As a parent I also feel concerned that all the beautiful guidelines in the world, will not help anybody, if austerity measures continue to lead to cutbacks in frontline education, health and social service budgets.  Good communication is key, but so are people in clinics, if parents are to receive effective support.  This was something I put to both of the MPs I spoke to,and something I will continue to bang on about for the good of science, politics, and my Pearl.

Pearl will always be more expensive than her siblings, she will always require support,and will never be able to pay this help back into the economy financially.  None the less her life is just as valuable as that of any politician in the highest government in the land.

Read the report: http://www.raredisease.org.uk/documents//undiagnosed-genetic-conditions-and-the-impact-of-genome-sequencing.pdf

Remain engaged with politics, and science.  Also engage with Pearl by following thewrongkindogsnow.

Check out the work of the Genetic Alliance: http://www.geneticalliance.org.uk

SWAN UK: http://www.undiagnosed.org.uk

And if you are a professional take a look at Renata’s vlog to see how we as parents appreciate your good practice.

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