BBC BLOGS - The Ouch! Blog It's a disability thing
« Previous | Main | Next »

She does know it's Tuesday (Disability Dads series)

Guest Guest | 13:27 UK time, Thursday, 23 February 2012


Four-and-a-half year old Amy Reyes has Rett Syndrome, a neurological disorder caused by a faulty gene. Almost three years on from her diagnosis, her dad Eduardo blogs about the way she challenged and changed what he needs to be as a loving parent.

I loved being a parent first time round. After a few months of sleep deprivation, being a Dad seemed to be easy and intuitive on the whole.

It helped that our first was a total daddy's girl. She was easy to spend time with and, back then, I felt that I was hardwired for a sort of parental greatness.

Amy arrived in 2007 and did a lot to demolish that confidence - though she's also been responsible for rebuilding it in some good and different ways.

Rett syndrome affects mostly girls. Heartbreakingly, girls with Rett regress, losing almost all the skills they've acquired in movement and speech.

Amy never progressed as far as walking and talking before the deterioration started. Just before she was two years old, over a period of a few days, I found she had lost the ability to sit for ten minutes in front of CBeebies without toppling. "What am I doing wrong?" I'd ask myself.

I had the same question when she lost the ability to hold and chew a torn piece of baguette at the farmers market and, on one occasion, I stopped just short of angrily accusing a baker that he must have changed the shape of his loaf. 'On edge' doesn't quite capture how I felt.

Then, and now, she'd scream with discomfort for a portion of any day. When she was younger it happened a lot during the night too. I recall one episode in the early hours where her yawl had attracted a local Tom-cat who just wouldn't stop prowling outside the back door while I struggled to cope. A particularly low point, that.

I have always felt an incredibly strong instinct to protect Amy, but other stuff around parenting, the intuitive stuff that was so simple first time round, didn't come as easily.

Unable to direct most of her movements or speak, Amy is 'locked in'. She can't show me for sure that she understands what I say so I found explaining to her what she was going to do, or where she was going to go next, didn't come naturally.

Likewise, without a conscious effort in the early days, I was bad at taking the time to try and give her choices - too impatient even to wait and see if she took more interest in the cover of one story book over another.

The fear that doing something public with her just couldn't work, made me reluctant to arrange it. Last year I almost vetoed Amy coming to a Chinese restaurant for her sister's birthday dinner.

I reasoned it was often her worst time of day, that one of us would have to leave if she wasn't happy, and even if it worked well we'd be pretty fraught with the worry that it wouldn't.

But her sister was adamant Amy should be there. She was right to insist - Amy had a ball.

The restaurant is a pretty sparkly place, the tables are widely spaced (she hates to feel hemmed in), she loved trying different dishes, and thought me feeding her using chopsticks was hilarious; her laugh, when it's there, is infectious.

Choices, being included, horsing around - they all matter. We have to keep on passing a lot of exit signs and fighting the urge to turn to the privacy of home, instead of taking the time, and a few 'risks', to line up those nice moments where everything comes naturally. And even then, it doesn't always work!

One final thought on learning to 'get' a four-ear-old who can't speak or do sign language ...

On those few occasions when I've told people that Amy would "never walk or talk", and they've responded by asking "what do you mean never?", I've closed down their annoying line of questioning by darkly joking: "And she'll never know it's Tuesday, either."

A few months ago, I suddenly twigged that her special school had different colours up in reception each day of the week. They actually make quite a big thing of it. So, you see, she absolutely does know it's Tuesday, and I need to remember that.

Does your child have communication difficulties? How do you gauge what they want and how they're feeling? And how do you respond to unwanted questions about your little one?

The Disability Dads series continues next Friday.

Comments

  • Comment number 1.

    This comment was removed because the moderators found it broke the house rules. Explain.

  • Comment number 2.

    EFT is described as 'unfalsifiable and therefore pseudoscientific' on wikipedia and controlled trials have found any effectiveness to be due to the placebo effect, desensitization or distraction. Or in other words if you can do it for free then you may as well give it a go but for goodness sake don't part with any money!

  • Comment number 3.

    I am not sure if this would work for your child, but have you looked into text to speak apps. They are affordable and easily accessible.

    The best app I have found is http://www.alexicomaac.com

  • Comment number 4.

    I would recommend visual timetables, communication and memory books, sensory books, sensory stories, make sure she has a way of saying yes, no and that she is in pain. Sounds like you have a speech therapist involved in her care - they will do their best to maximise her understanding, expression and social skills. My thoughts are with you - stay positive.

  • Comment number 5.

    What a lovely and truthful blog about a heart-breaking situation for any parent. I only learnt about this syndrome when I became governor at a special needs school. It is great that Amy's sister insisted that she came to her party. You obviously have two special girls to love and bring up. Their needs will be different and demands on you different too - which is true for all parents with more than one child! Keep learning. It is never easy being a parent!!

  • Comment number 6.

    Great article. I could have written something very similar ten years ago and interestingly we took a very similar approach in raising my son. And my son's big sister is just as adamant that he is included ! All the very best, it is hard work but so vrey worthwhile - the same as all parenting - but more so.
    @audiofairy, we use a lot of these techniques still. At holidays we have a calendar that is coloured in each day to maintain a schedule when not at school - perhaps Amy could use something simliar to match the schools colour scheme ?

  • Comment number 7.

    Eduardo, you are an awesome dad! Amy's story has put a tear in my eye. my bro has four kids and my sis has three, so I can imagine how devastating something like this must have been at the start. Bless you mate. Keep on keepin on. :¬)

  • Comment number 8.

    Really interesting to read. I have a daughter aged 24 ( well nearly 25 ) with Retts Syndorme and whilst life has been hard, and we have been through some tought times, she has the most amazing sense of humour and knows far more than we give her credit for.

  • Comment number 9.

    Can relate to the experience with an elder sibling, and bad nights... My daughter was a rock when my son was born with undiagnosed downs. She was only 5 at the time, and as far as she was concerned she had a beautiful baby brother. I remember trying to explain to her about the extra chromosome that he had. Her response: "Dad, how could you fit extra stuff in to something so little?" ... Made me laugh at a tough time.

    It's very easy, as a parent, to spend all your time worrying about your child; actually what's needed is that you accentuate the positives, and not worry, but fight for your kid to get them the care they need. Then life becomes a bit better.

  • Comment number 10.

    Im a "young" parent (23) to my 3 1/2 year old who has autistic spectrum disorder, severe learning difficulties and challenging behaviour to name but a few and as such can understand a small proportion of what you are going through, Eduardo I admire your positivity and hope that you and Amy receive the correct support, it's not easy looking after a disabled child and remaining positive, truly you are a brilliant human being

  • Comment number 11.

    A very honest and touching account of how it can feel as a parent of a special needs child.

  • Comment number 12.

    My daughter will be 52 next week and she was brain-damaged at the age of five months by the whooping-cough vaccine (DPT). Even though this was an iatrogenic injury she was not given the care and support that the NHS ought to have been able to provide. This was largely because her condition is not understood (not even recognised by some) and there are no specialists who seem to be conversant with it. There is no mention of it in any medical textbook (as far as I have researched) and so I have had to study it and write my own; albeit that it is specific to my daughter's case. In doing so, I have discovered that autistic spectrum disorder can be brought about by post-natal atraumatic brain damage. I am happy to share this information on a need-to-know basis.

  • Comment number 13.

    This comment was removed because the moderators found it broke the house rules. Explain.

  • Comment number 14.

    I work with Special Needs kids, currently a little girl on the autistic spectrum, and I know how you feel about having the patience to wait for their decisions and trying to interpret how they feel. I have to bite the inside of my cheeks sometimes to stop myself from re-asking or re-phrasing a question and just wait for them. It's hard work trying to monitor the environment constantly to watch out for things that may upset her so I can prevent it or simply be ready to help her through those issues. It must be so much more difficult when it's your own child, so well done and good luck to you both.

  • Comment number 15.

    A sad story well told. Makes me grateful for my little girl who though cheeky, disobedient, anger-inducing and just downright awkward some times, is still the light of my life. I am so thankful she is here and healthy and happy. I take my hat off to those who have to deal with challenging situations - I am not sure I could cope and you reaffirm my faith in humanity.

  • Comment number 16.

    @oakwoodbank, you are correct in that it can be caused by PNABD, however there isn't conclusive evidence as to any of the possible theories as to how and why children suffer from ASD i know this from the hours of research myself and my partner have done and continue to do, one relevant fact is that if you have a child with an ASD, children born following this child are much more likely to suffer similar issues not sure of exact percentages but again this is as yet concrete fact, we sit and we wait.....sorry to go on i could talk for longer : ) , this thread should be just about praising Eduardo and what he and his family have and will achieve in life!!

  • Comment number 17.

    Hi, what a wonderful blog. Telling people how it is, is wonderful, because people often feel they are on their own, or this particular thing is just happening to their child. I just wondered if something like 'BigKeys'. The company specialises in large keys for children with dyspraxia etc. The keys can be about 2" big, so after a while Amy may by able to type something. There are even more special keyboards, like ones that have a picture of a glass of milk and Amy could just press on it. May be well worth looking into. Children (with learning difficulties or not) always know more than we give them credit for. Keep up the good work. If I can help please email: maria@dyslexiaa2z.com or go to my website: www.dyslexiaa2z.com and click on dyspraxia. God Bless. Maria

  • Comment number 18.

    I love this story - well done for writing about your frustrations and also your self doubt. Anyone who has contact with a person with Rett Syndrome will know exactly where you are coming from. On a positive note, I designed a multi-sensory colour coded week for use in the local Total Communication strategy on the Isle of Wight - using the colours of the rainbow, so Monday is red, Tuesday is orange yellow is Wednesday (etc - green, blue, indigo and violet. We also used pink for the weekend, i.e. no work or school). You might be interested to know about some trials we are running using the Tobii Ceye control of computers for people with Rett Syndrome. So far, all the people we have worked with from 2 to 40 years, have shown an interest in what is happening on the screen; most can be calibrated and enjoy the cause and effect of early software. One lady who had never seen a computer before, let alone controlled one, was asking for a drink within 20 minutes of being calibrated. Exciting times. Contact me if you are interested. I wish you all the best with your lovely daughter, and might meet you sometime if you come to the RettUK Family Weekend.

  • Comment number 19.

    Thanks for sharing this. This comment pulled me up short though:
    "Just before she was two years old, over a period of a few days, I found she had lost the ability to sit for ten minutes in front of CBeebies without toppling. "What am I doing wrong?" I'd ask myself."

    As a parent and a farmer and horseman one is always first an observer - noting everything from hour to hour and day to day. Very little of what is observed is to do with me and 'fault' is rarely a relevant concept in caring. I simply do not see how your first reaction could be that it was your fault!Rather observe, come up with theories and test them. It is a fascinating puzzle and even when too young or unable to speak the response when you get something right is wonderful! In fact the just about the only thing the carer can get wrong is failing to notice, or not paying attention and that seems unlikely to happen in this case! Communication goes far beyond speech. When she is older a little dog might enhance your family life too as they do not need speech to communicate.

  • Comment number 20.

    Hi, one of the simplest and cheapest ways of communicating with children who have severe motor impairments is through eye contact, using a clear sheet of plastic with 2 images on for her to choose, you watch her eyes and wait for them to fix on one object. Obviously this requires patience from both of you and a lot of practice, but it could open up a new world. I work in special education and it is so easy to underestimate the wonderful children I work with. As long as you show your children love and acceptance you can't go far wrong. Well done to the dad in this article and many other parents/carers/guardians/friends who are working hard to support somebody living with impairment.

  • Comment number 21.

    My daughter is five years old and has Retts Syndrome. As sunshine (comment 18) said, RettUK is more than just an information resource. It's immensely reassuring to be able to talk to other families who may have already experienced the unique regression symptoms and behaviours girls with Retts suffer from.

  • Comment number 22.

    I have taught some very beautiful girls with Rhetts, they truly are Rhetts angels. I am very grateful to have been given the opportunity to become part of their lives. Luckily the 2 girls that I have taught recently had amazing family support, and their love and devotion helped these little girls to become the shining stars that they are.

  • Comment number 23.

    A belated thanks for your comments, support and thoughts everyone (moved house Thursday, just getting back to things that don't involve a jay cloth/ screwdriver/ call to British Gas...). Just to add, we've met some incredible people through Amy - knowing them and being her dad are genuine privileges, and I hope that came across.

  • Comment number 24.

    Eduardo - a really great article, and exactly mirroring our own experiences with our daughter Lizzie. Lizzie is now 11 (going on 14!), and was diagnosed with Rett Syndrome when she was about 2 1/2. For us, the thing that's helped us through all this more than anything else is Lizzie herself - she's highly sociable, and has a strong personality that everyone who interacts with her adores. I'd also echo the other positive comments about Rett UK, who provide really good-quality information and support.

  • Comment number 25.

    Eduardo - it's a great article. Thanks to the Wizard of Ouch for giving us Dads a voice for this series. The restaurant incident is so familiar - I hope that many people - parents of of disabled kids and not - read this. By the way, folks, Amy's Mum blogs under "Living with Rett Syndrome" - a must-read!!! Steve

  • Comment number 26.

    Parents of children with disabilities deserve far more credit and support than they generally get. Your efforts are appreciated though!

  • Comment number 27.

    Eduardo is such a wonderful father and Amy is so sweet. I admire this kind of love and care especially in the self centered world we live in today. I agree that parents of children with any disability should be praised as it can't be easy.

 

BBC iD

Sign in

BBC navigation

BBC © 2014 The BBC is not responsible for the content of external sites. Read more.

This page is best viewed in an up-to-date web browser with style sheets (CSS) enabled. While you will be able to view the content of this page in your current browser, you will not be able to get the full visual experience. Please consider upgrading your browser software or enabling style sheets (CSS) if you are able to do so.