It’s been busy!

One of the things my blog is meant to be about is life, so it is a bit of nuisance when life gets in the way and there aren’t the hours in the day to do some writing!

The last couple of months have been a struggle.  My poor Mum had a nasty fall, resulting in broken bones and a miserable hospital stay.

As a student nurse the ‘Activities of Daily Living’ were what was drummed into us and the importance of ensuring that these needs were met during a hospital stay. It was hard to witness the lack of personal care and the malaise shown towards patients who were elderly. Modern medicine is great but if we are to keep people living for so much longer we surely need to offer services that reflect the interventions used to achieve this. Life must have value to and quality. We cannot treat people as though they are no longer important once they reach a certain age.

Mum is now in a nursing home and my Dad still at home in their flat. They have been married for 69 years and it seems very sad so I am spending a lot of time beetling between them and trying to ensure they see plenty of each other.

While all this has been going on we have had Zach’s 21st Birthday Party. It was so great to see so many people who have been such a big part of our journey all in one place. The look on Zach’s face as more and more people he cares about arrived was a picture. Thanks so much to everyone for coming, you are all fabulous!

 

There has also been plenty of work going on with the ‘Spectrum of Misconception’. We cannot thank you all enough for your generosity and support with our crowd funding. We have the first illustrations for our autism myth busting cards and we also have a great logo and a Christmas card.

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Our logo is based on the triad of impairments which are often referred to in relation to the autistic spectrum.

Triad of Impairment is used to describe the main features of autism. These are social interaction, Communication and language and rigidity of thinking.

The triad of impairment will tell you all about the most negative aspects someone who has autism may have. I am sure I don’t need to explain the meaning of our logo!

We are now working hard to get the Christmas card out in a timely manner so that it isn’t too late for those who want to buy it. I know some people are incredibly organised and buy cards early so  I can’t bank on everyone being like me and buying, writing and posting my cards on the last day of posting.

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Our Christmas Autism Awareness message is….Autism comes in all shapes and sizes! It will be on the inside left cover, so subtle but lets hope the message hits home.

We have all we need for the packaging so can post cards out to online orders. All our packaging and products will be environmentally friendly and recyclable.

Our Christmas card is a beautiful design which has a very subtle autism awareness message. We wanted our card to be able to sit happily alongside others whilst raising awareness at the same time. I hope you will love it as much as I do.

We have a face book page and have been working on the website. I am pretty much totally useless with anything on a computer so am waiting for expert support to make them look as interesting and professional as we want them to be.

Please keep an eye out for our Christmas Card design and if you would like to order some let me know, I promise it will be ready as soon as possible.

The website (when it goes live) is at http://www.spectrumofmisconception.com and the facebook page is Spectrum of Misconception.

I look forward to hearing from you (fingers crossed!) 🙂

 

 

 

 

 

Crowd Funding update and massive thanks!

Hi all, thank you so much for all of your wonderfully generous donations. We really appreciate it. We think it’s high time to let you know what our plans are and what progress we are making. After deliberating over the type of product we wanted to create, we felt strongly that it should somehow link closely to Zach’s journey and autism awareness more generally. For all the goodwill that is out there, there are still so many untruths, misconceptions, and myths that we need to work together on to dispel and change.

 

For that reason, we have decided to capture many of the mainstream misconceptions of autism and to do our best to make people think differently. We are doing this by employing a wonderful artist and illustrator to capture some of these concepts pictorially, which we will then be designing onto cards. The plan is for the cards to  be brought to Zach’s base where he and his team can organise and process orders, package the cards, and post them out to customers. We plan on opening an online store where people can buy the cards, interact with like-minded people, and give us their own ideas for future designs and concepts.

 

We have finalised the name of our product, and are putting the finishing touches on our logo and first two concepts. For our next update – coming soon! – we will upload some of these images to show you the process.  We would really like to get your feedback and input! We will also post some of our ideas to online forums to get feedback from other like-minded people in the hope that we can truly offer a product that will be valued by those who buy it. Finally, we’ll set up a Facebook group in the not-too-distant future to facilitate further discussion as we continue to develop our concepts and corresponding designs.

 

Thank you so much once more for your donations, and watch this space for further updates!

Carer Burn Out!

What happens when Carer’s burn out?! Who picks up the shattered carer pieces and tries to put them back together again?

Over the years it would be fair to say I have crashed and burned a few times, the degree of care tips slightly with something, a family bereavement or as at the moment my parents needing more support and I feel like I am in free fall to the bottom of a very deep hole.

The pressure of needing to be able to care at all times, 24 hours a day and 365 days a year is huge. If all those who care stopped to think about it, we would probably all be in free fall.

When it comes to caring for Zach we have a plan, and we hope we are heading in the right direction. We have the best support in place for him that we could hope for and he is learning and for the most part enjoying life.

We no longer have any overnight short breaks for Zach which was a step backwards for him and us. Zach had got used to spending a couple of nights away from us each week which was good for his independence and it gave John and I a little window of time to do ‘normal’ couple things, a meal or maybe a film.

However eventually we will find somewhere which will make a suitable Transition House for Zach and some other young people who are at a similar stage in their journey and he will start to have independence from us again. Although it will be a slow process it will be good to know that we are moving forward.

So I have my job caring for Zach, there isn’t a day goes by when I am not considering things which need to be put in place, looking for interesting trips out, making appointments, buying equipment or wondering what to put in his nutri-bullet that night.

I have my paid job, 6 hours a week as a Community Staff Nurse, I visit patients in their homes who are in need of nursing care. Many patients are at the end of their life and require Palliative Care, It is so important that I am able to reassure both patients and family and friends. My head cannot fall off.

My parents are both 93, Dad is 94 on Sunday and my Mum in September. I am incredibly lucky to have them both and physically they are both in good health.

For a number of years my Dad has been almost completely deaf and my Mum has had Alzheimers Disease. This combination makes communication very difficult, my Mum often struggles to find words and my Dad can’t hear them even if she can.

Over the past months things have become increasingly difficult for them both. My Mum has severe anxiety at times and my Dad can’t seem to find a way to calm and reassure her. Other days my Mum is lucid and cheerful while my Dad is tired out and sleeping. My Mum is lonely and feels that they never do anything interesting or laugh with other people and has days when she doesn’t want to get out of bed.

The Carer’s go in at 09.00 every morning and my Dad panics if Mum refuses to get up! With age, my Dad has become inflexible and change aversive which I get, but it is also understandable that some days my Mum doesn’t want to get up.

I have been getting more and more frequent phone calls asking me to go round and help, I can hear shouting in the background, speak to my Mum on the phone who sounds distressed and feel I have to go, most people would. The idea that my elderly parents are struggling to cope and I might just be able to calm things down is what makes me go. It sometimes takes a while but we usually get there.

It is strange how one day you are bumping (not gliding) along like a sort of busy Water bird, paddling madly out of every ones view and then all of a sudden you feel like a dying swan. You don’t feel able to bump along anymore, the mass of responsibility that you feel at making sure everyone else is doing okay completely overwhelms you and you crash and burn.

I am at the moment hopefully back on the way up from my latest burn out, I have organised GP and Social Work visits for Dad and Mum which I hope will be fruitful.

I have to acknowledge I am only human and I don’t have a magic wand. I can’t change what has happened but I can help to change what might happen if help is put in place.

John is as ever a massive support, as are wonderful friends and it certainly helps to talk.

Sadly this is all too common for Carer’s, the isolation, expectation and responsibility just weighs too heavy.  It is hard to know what the answer is, we can’t predict what will happen in our lives so can’t prepare and alter the course things take.

I am sending love and strength to all those who are Carer’s, you do an amazing job. It is probably the job with the least recognition and plaudits but one of the toughest there is to do.

 

 

 

 

 

 

 

What is the 2nd April all about?

April is World Autism Awareness Month. The United Nations deemed April 2nd World Autism Awareness Day 11 years ago.

The idea being to raise awareness, they committed to promotion of full participation of all people who have autism and ensuring they have the needed support to be able to exercise their rights and fundamental freedoms.

Sounds good so far.

I wonder however, what this is supposed to mean to the thousands of people who have autism and their families who struggle every day to meet the needs of someone they love who has autism and all the complex issues which come with it.

I remember thinking when I was maybe less cynical it was a good thing but how has it changed people’s perception and what difference does it actually make, how far have we come since the first World Autism Awareness Day?

 I am autism weary. It was never going to be an easy journey but with a massive increase in the prevalence of autism, 1 in 150 and despite being 11 years on not very much seems to have changed.

World Autism Day has somehow become a celebration of autism, but as a friend asked ‘why would we celebrate autism’. I don’t see many friends who have a child who has autism throwing a party. Autism is at best difficult and at worst wrecks families and lives.

Over the last 11 years there has been far more in the media regarding autism. Many of the public have an inkling about the triad of impairments but have little understanding that not everybody with autism is the same.

It is so rare for the media to share anything other than moderate autism. The exception is the horror stories of Winterbourne View and Mendip House to name two. Other than these grim headlines people who have severe autism, behaviour that challenges and complex needs are never mentioned.

What we can do to stop the vile abuse of power and violence to those very vulnerable people living in such establishments which I am sure sadly still exist, is let people know more about them and stop them leaving the communities they grew up in and make them visible.

If there is something in the news or on television friends and family eagerly ask if we have watched it. I have to say I see enough autism in my life.

The A Word which is a drama recently shown on the BBC portrays a cute little boy who has autism. All our children were cute when they were young, autism or not. What about people who are adults who have autism?!

Children grow up and it may come as a shock but adults do have autism, you just don’t see them very often!

 Channel 4 recently showed a program called ‘Are you Autistic’ which was hosted by young ambassadors of the charity Ambitious about Autism. I’m not suggesting life is easy for these young people but they are all able to communicate and indeed present a television program.

I emailed Channel 4, I applauded them for airing a program about autism but I explained that they were just reinforcing public perception of what autism is.

Their response was that autism is such a wide issue and they couldn’t possibly cover every aspect which was the reason they chose to cover this particular aspect.

My response (I do always like to have the last word, as my poor husband knows only too well) was ‘What is massively disappointing and sadly predictable with all the media coverage of autism is that despite it being intricate with so many different avenues to discuss it is always the same aspects which are shown and discussed.

I hope that Channel 4 will be brave enough to make a program which is not just a reinforcement of what is already the majority of the public’s perception of autism’

I don’t expect they will.

How about World Autism Awareness Day instead of encouraging people to change the colour of their lightbulbs (which is never going to bring about change! Who even thought of that?!) sharing facts and figures about autism over the month of April.

Engaging with broadcasters and media who are willing to bring something different to the table and share with the public what autism at both ends (and in the middle) of the spectrum look like.

The more complex aspects of autism, perpetual anxiety, the difficulties with transition, the lack of suitable services, gut problems, what happens to people when they leave school and have nowhere to go to continue to learn, lack of peer groups, social isolation the list is endless.

What can be done to help people who have autism and are struggling in a public place, why getting out and about is as important for people who have autism as any of us, what can be done to make it easier to do this.

The Equality Act, Disability discrimination, the Care Act, the Autism Act and all the other things written in law which are ignored far too frequently. Empower those who have autism, parents and carers!

Engage with retailers, food chains, employers, towns and cities to make them more autism friendly. Ask sports centres, clubs and recreational facilities to provide inclusive activities. To make reasonable adjustment without families and carers feeling side lined and excluded.

World Autism Day and month should not be about celebration, celebrating autism is something of an oxymoron to me but should be about encouraging change and helping those who have autism have a life which we are all at ease with.

 

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Zach’s fingers are crossed for change and progress!

 

 

 

 

 

 

 

 

Planning ahead.

I haven’t posted for some time, I have had plenty to post about but it is more of the same, brushes with the law, the public intervening when Zach escalates in public. I don’t want to keep repeating how tricky it is accessing the community for adults who have complex needs until I have something positive to report!

I am in Manchester! A few weeks ago the Challenging Behaviour Foundation informed readers about a conference here, it is for those living with or working with learning disabilities and it is called ‘Fulfilling Potential and Supporting Better Lives’. The CBF were offering 5 complimentary tickets to the conference and very kindly gave me one.

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Fair to say, I’m not here for the view!

It feels like the right time for me to come to a conference about this. One of my goals this year is to make some headway with setting up a Transition House. The purpose of this would be to start the process of Zach beginning to start transitioning to what his life will be in the future, a life where he has independence from his parents.

Initially Zach would just visit for a few hours at a time to build up familiarity and explore the house and hopefully feel comfortable there. We would gradually build up the amount of time he spends there. Transitioning is especially difficult for people who have autism, they upset expectations and routine and therefore cause extra anxiety.

Zach will always need 24 hour a day support but at home although he does a little to help he is pretty much the King and John and I are his minions! In the Transition House there will be expectations that he will help with the running of the home which will definitely come as something of a shock 😮

At the moment Hertfordshire doesn’t have anything like this to my knowledge but I hope that they will be receptive to the idea.

Tomorrow there should be a wealth of  information about other such projects which have been successful and I really hope to go home with fresh ideas and confidence that this is something I can do!

It seems bizarre that I am here in Manchester to try to garner some ideas for Zach’s future when I am already worried about how he will cope without me at home tonight, and how I will cope not knowing how he is coping!

Fortunately John is on hand and is hopefully putting the finishing touches to Zach’s dinner at this precise moment!

I went for a wander to check out where the Conference is being held and as I put my hand in my pocket felt a slinky and a scoobie string, it made me smile! Anyone who knows Zach will know these are synonymous with him 🙂

 

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 Manchester is nothing, I’d go to the moon for Zach! xx

 

 

 

 

 

 

Happy New Year!

Happy New Year everyone, I hope you all had a merry and bright Christmas.  We have slid into a New Year relatively unscathed! I hope it is a great one for you all.

2017 was an up and down year for us and thezachproject. We found out in December 2016 we needed a new base as Mudlarks were losing the use of Scott House so the first two months of the year were spent in a massive frenzy knocking on doors until I found somewhere suitable. Our current premises is great and has been one of the successes of last year.

 

My one disappointment with our current base is that it is really only big enough for Zach, it is still my goal to find a base which can have multiple users. The base would be for people who are currently in ‘no mans’ land, they like Zach cannot access current services because of their complex needs yet need a base, inclusion, activities and a peer group. A fulfilling and satisfying life.

The other morning I woke up after a very vivid dream (I have a dream!) when part of a large local sports centre was being sold off for £159,000 and that was going to be the base……anyway I’ll keep doing the lottery!

We had plenty of ups and downs with Zach’s behaviour over the year and his new supervisor worked tirelessly to try to find ways to satisfy Zach’s rituals without it descending into an escalation and challenge for everyone involved. Beam ABA Services continued to support Zach and us as a family and I thank our lucky stars (if there are such a thing) daily that he has such expert committed support from them.

To contact Beam ABA Services Limited if you are looking for expert support call -020 3886 0640 or email contact@beamaba.com

Becky who owns Art Explorers in Hertford started working with Zach in September and she is one of the big hits of the year! Zach has art with Becky every week on a Thursday morning, I am so pleased to have found her! She is so tuned in and switched on and Zach really looks forward to her sessions. She has given so much thought to the sort of activities that Zach responds to and gets satisfaction from. It is so refreshing to have found Becky, I had seen her posters around town for the classes she runs with young children and just on the off chance contacted her. She had such a ‘can do’ attitude from the off set, she is smiley and cheerful (which goes a long long way with Zach) and enjoys the sessions herself too which is a real bonus.

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To contact art explorers you can email artexplorers1@gmail.com, I can’t recommend her enough.

We are still looking for a drum teacher, Zach had an electronic drum kit for his birthday and we would love a drumming Becky if anyone knows someone who is patient, enthusiastic, smiley and happy who may be interested 🙂

One of the downsides of the year was the almost frequent contact we had with the police. In November one Sunday evening when Zach was upstairs and John and I were watching the Strictly Results show (it’s just how we roll!) there was a knock on the door. I opened the door to find a policeman asking after Zach’s welfare. I invited him in and he told us that a member of the public had reported seeing Zach and his support team in Stevenage on the Friday afternoon. Zach had escalated and been escorted back to the car and the member of the public had reported his team were repeatedly shutting the car door on his legs and laughing and joking saying that they mustn’t leave any bruises on him.

I was astonished when he told us this, Zach had just had a great weekend, he was happy and cheerful and certainly had no bruises anywhere.

After a long chat with the Officer he was satisfied that the member of the public had not given an accurate account of what actually happened, but the police had reported it to Social Services and on the Monday morning I had a call from social services who then visited Zach at his base and spoke to Zach’s supervisor, the matter was then referred to safeguarding.

Fortunately due to the diligence and professionalism of Beam recording and taking data after the Safeguarding meeting the matter was closed. However it didn’t feel very nice knowing that if the meeting did not go well, or if there was not a clear report concerning the incident that the outcome could have had a very negative consequence for us all.

I am grateful to members of the public who look out for the vulnerable and act if they are alarmed by something which they see but to report something and embellish what happened could have caused an out of control snowball for us! I like a bit of snow but….

When a person who has autism escalates it is not pretty, it is an uncontrolled mess! Zach’s team are all qualified in Team Teach which is safe and causes no harm or pain. It is alarming to witness, it is chaotic and frightening and what is happening could easily (and has) been misinterpreted but the alternative of public escalations is them happening somewhere out of sight because the support team are not confident to take him out in public……Zach loves going out and about and that isn’t something we can ever let happen.

I had my broken ankle in September which put a lot of extra strain on John. We were however overwhelmed by all our wonderful friends, although I would rather not have broken my ankle to have this affirmed. Zach was an absolute star when I was in plaster and was very gentle to me, who says people who have autism don’t have compassion!

Laura and April gave up having Zach overnight in November due to a change in their circumstances so I need to explore our options and find the best solution for us all before this year gets too old. I need a plan, then I need to get the plan agreed and make it happen. We are very grateful for the support they gave us as a family.

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Cora and Daniel still take Zach out for the first two Saturdays of every month. He has a great time with them and positively jumps with glee when they arrive. He has been to some new places and some which are old favourites and always comes home happy and content from their trips out. They have been taking Zach out for some years now and we feel very lucky to have them, they are really wonderful, kind people. They both work full time but still give their free time to us, we really appreciate them.

 

‘Get Set’ was a great addition to Zach’s weekly activities, it is an initiative by The Three Rivers District Council and designed to increase accessibility to leisure activities for adults who have disabilities. They have a number of different activities over the course of the week including dance, games, trampolining, drama and horse riding. To find out more about what they offer contact 01923 776611. It is a shame East Herts District Council don’t have a similar offer.

My last mention in this post goes to Hertford Theatre. It is a lovely little theatre and I have had conversations with Ben who is the front of house manager about doing more for people who have disability at the theatre and he seems keen. The theatre runs its own pantomime every year, this year it was Rapunzel. The production ran from the beginning of December to January 1st. On the 28th of December there was to be a relaxed performance, we and many other families I know purchased tickets and looked forward to the one relaxed live production of the year.

On the 28th December due to cast illness the performance was cancelled! What a massive disappointment. It may have been unavoidable but still such a shame that our children missed out on the experience of live performance.

Today I went into the theatre and got a refund on the tickets. I asked if they were going to put anything on instead as a relaxed performance. I was shown two shows between now and April. While I applaud that they are having performances which have British sign language and audio description it is quite alarming that this was regarded by the theatre as being a relaxed performance!

Disability comes in all shapes and sizes! One size does not fit all and I am pretty sure that Zach would not be very interested in a show about Afghanistan and post traumatic stress disorder, it doesn’t sound quite as much fun as a pantomime!

 

 

The A Word and other such things…

The Beeb possibly thinks it is being radical and right on airing a television drama about a family with a young son who has autism on a prime time slot.

We had Chris Packham tell us all about his life with aspergers and the difficulties which he has faced as a consequence.

He also touched on the use of Applied Behaviour Analysis in America. ABA is used here to excellent effect and this needs to be recognised.  Zach learns using ABA delivered by Beam a specialist ABA provider and there are whole schools of pupils learning using it right here in the UK. People need to know that!

I have many friends who have family members who have autism to a similar degree as the child in The A Word and who have aspergers and I am sure that they can relate to these programs and identify with the drama and facts.

I can’t bring myself to watch these things!

So many people have asked me if I saw The A word or the Chris P documentary, I didn’t. I am guessing that people think I would be interested in them because they are about autism but they aren’t about my son’s autism or many other young people I know who have autism. They don’t relate in any shape or form and I can almost not bear that people think they do.

For some reason (and I know I have blurbed on about this before) families who are living with someone they love who has severe autism and challenging behaviour are rarely, if ever acknowledged by mainstream television.

A few years ago the lovely Louis Theroux filmed in America one of his documentary programs on Autism and a school which was helping pupils who have challenging behaviour and difficulty coping with daily life. One of the reasons Louis gave for filming in America was that there has been a massive increase in Autism in New Jersey. News flash Louis, it isn’t only America!

I watched this 2012 documentary with interest, I can remember it graphically showing young people who have massive anxiety and communication difficulties in full melt down at home with their struggling families and how well it portrayed the stress and despair for those families and young people.

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Louis Theroux and his 2012 documentary ‘Tough Love’

 

 

 

Autism and complex needs is a recognised term for describing what Zach has. The complex needs covers just what it says.  Daily challenges which change on a weekly basis so just as quickly as Beams expert team of behavioural psychologists get a handle on one behaviour, Zach decides to change to another equally challenging behaviour just to keep them on their toes.

Repetitive behaviours which come and go, throwing things out of the bathroom window has recently re appeared in Zach’s repertoire. Expensive skin creams and cosmetics need hiding again.

With colder weather most people want to keep their windows shut and the warmth in, Zach has started opening the bathroom window as wide as it will go. If I ask him he will close it but I am not always aware it has been opened until I feel the wind whistling around the house.

Zach has also started turning lights off when he leaves the room which is great unless you are left sitting in the dark!

None of these things are the end of the world and as with every aspect of life we have to pick our battles, so what if my bare mineral eyeshadow which I have yet to wear disappears out of the bathroom window, or John is standing in the shower naked and wet before he realises there is no shampoo or soap in the bathroom as it has all gone the same way as my eyeshadow! These things are a minor inconvenience and we learn to live with them very quickly.

We never have any toilet paper in our bathroom, it is kept in a special secret place because our back yard was covered in more loo paper than a whole litter of Andrex puppies as Zach sees toilet paper and it immediately gets thrown out!

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Very cute! The toilet paper on its own is less cute and much less so when it has been raining and is strewn all over the back yard!

 

We are used to compromise in our house and in our lives which is usually fine unless we are being pushed very hard by other aspects of life and it can seem especially tough.

The most difficult thing by far is the challenging behaviour, that is something which no matter how often it happens we can never become used to. Zach’s challenging behaviour at home has decreased since Beam started working with him, they offer consistency and have given him the tools he needs to be able to communicate which is fantastic.

Even though the challenging behaviour has decreased we still both are victims of the aggression which Zach feels when he is excessively anxious, tired, hungry, unwell or maybe just feel incredibly frustrated.

Would people tune into a drama about a family living in Hertford with a gorgeous son who throws things out of the bathroom window and switches lights off leaving his family in the dark? The likelihood is that they wouldn’t and I entirely understand that.

But why do organisations such as The National Autistic Society react as if it some major coup to have The A Word on television?

Sadly its rather like Rain man all those years ago, Tom Cruise and Dustin Hoffman in what was a nice film but led many people to think that anybody who has autism is a mathematical genius or has some other amazing talent.

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Nice film but it was just a film!

 

 

Although the National Autistic Society do some good work they are mainly geared towards families such as the one portrayed in the Beeb’s offering about autism. We are members and there is so rarely an article or campaign which is relevant to our lives I often wonder why we bother.

The Challenging Behaviour Foundation is a charity which was set up by a parent, they share excellent advice and information and is far more useful and relevant to us.

www.challengingbehaviour.org.uk
Louis and Chris if you are reading this and fancy finding out about Autism and Complex needs please do get in touch, I know of many people who could contribute and want their family members to be better understood by the general public.