Letting go of the pause button

Have you ever wished life was like a DVD that you could pause the good bits, rewind the funny bits but fast forward all the boring stuff?

My children are both fixated with DVDs to the point that I can name every character on Peppa Pig and every machine on Bob the builder! But being autistic they don’t just want to play the DVD from start to finish…they want the same episode repeated and rewound, the same few minutes fast forwarded every time and the DVD turned off at an exact point every time it is watched. The DVD is predictable, familiar and brings security. Unlike the reality of life.

As a parent I will need to help my children deal with that reality. Every child craves security, predictability and routine but children on the autistic spectrum cling to these things for dear life. And they need so much more patience and support to face change of any sort.

We are normally programmed to want to try new things, to challenge ourselves and master new skills. If we didn’t have this drive then new technology would never be discovered. We would never be able to learn a new language and we would never visit new and exciting places. No-one would ever learn to drive. We would all still be wearing nappies! But what do you do when your child seems to have no desire to learn new things, when the thought of even something a little different causes them so much distress and confusion and makes them scream? How do you get their life off of ‘pause’ and get them to ‘play’ again? How do you show them that there is more to life than their beloved DVD?

We are taking every day slowly. In fact we are taking life slowly. We are reaching milestones years after other children and celebrating achievements that other families thought nothing of. It is kind of like living life in slow motion. But then slow motion has to be better than pause!
Anything is better than pause!

So I have moved my daughter out of nappies and into pull ups. It’s a start. Slowly I will be introducing her to the concept of using a toilet. What some children achieve within a week is taking us years to master. But she is slowly becoming more aware. It isn’t going to be easy and yes I wish we could just fast forward this one to avoid the tears and the tantrums and the wet clothes but this is part of the programme and as long as we take things slowly one day we might just get there. We are just not going to settle for pause any more.

Slowly but surely things are changing around this house. New books are getting introduced at bedtime and new activities are going to be tried. I am pushing the boundaries by pressing the play button and holding onto the remote so that rewind can not be pressed any longer.

There’s going to be something new on their plates too. Just a little for now. A few grapes, a different flavour of yoghurt, a little bit of rice to try. It may only get touched or licked but hey that’s progress! It may get thrown on the ground or left on their plates but we have to start somewhere. They have lived on mashed potato, the skins of chicken nuggets and fish fingers and chocolate spread sandwiches for way too long now. I am even making them have a multi-vitamin. Oh what a cruel mother I have become! I am not popular but then I would not be good mother if I allowed them to remain where they are. They have to grow up and move on. They are not babies any more.

And the DVD’s are getting limited. For children who struggle with social interaction and especially for my son who can not speak at all, watching DVD’s is not helping at all. I appreciate we all need time to relax and unwind and that life is very overwhelming for these children but mum is going to become more interesting than your DVD. We’re going to play together somehow. We are going to learn together and have fun. We’re going outside to explore new things.

It isn’t that we haven’t done these things before. But life can so easily find you stuck in a rut. It became easy to settle them by putting on a DVD. It got too much trouble at mealtimes to face introducing new food again and the heartbreak and trauma of toilet training combined with constant appointments found me putting nappies back on my daughter too often that it became an everyday occurrence. And now I have realised that sometimes it has been me pressing ‘pause’ and not just the children.

We can’t allow the mundaneness of life to put our life’s on pause. We can’t allow ourselves the liberty of getting stuck in a rut. If we don’t try something different we will never experience the fullness of life. Yes my children have developmental delay and autism and find doing things differently a challenge. But life isn’t a DVD. It isn’t the same thing every day (even if they do everything they can to make it so). Today is a new day and I am determined my family is going to enjoy it and let go of the pause button. If you don’t hear from me it’s because I’m busy playing with my kids!

Advertisements

There’s no better support than the love of your sister

There’s been so much happening in the last few months. We have moved house, the twins have moved to a new nursery and we have had an abundance of appointments. We are now in the midst of working alongside a sleep counsellor, a developmental community paediatrician, a medical paediatrician, a genetic nurse, a social worker, a speech and language therapist, an occupational therapist and our public health nurse. Life is busy but it is such a relief to have support in place and to have so many people working with us to support us in caring for our children.

Today we received the first of the equipment which can make such a difference to caring for my son. I am so grateful. Grateful that such simple equipment can be provided. Grateful that within a week of being assessed it was delivered to our door free of charge. But mostly grateful that someone listened. Someone cared.

That is the best support any person, any professional, any friend can give. The support of a listening ear, a caring heart and a shoulder to cry on when the nights are long and the days are scary. That’s where support groups come into their own. Parents going through similar experiences who can hold your hand, listen to your story and support you through the challenges as well as rejoice with you in the breakthroughs.

I am so grateful to be part of groups like that. Some are online with people I have never met but who have walked similar paths and can help navigate tricky ground they have walked through before. Some are in real life who have watched my children grow and now know them personally. And then there are the others who support and encourage me who don’t know what it is like to raise a special needs child but who can join their faith with mine, share a hug and listen and do their best to understand. And pray. All of these people are precious and I need their support more than they may ever know.

So I feel supported right now. Great.

But I am not the one with autism. I am not the one who has severe problems communicating, is unable to speak and is fighting an invisible condition called neurofibromatosis. All the professionals I mentioned above have one person in common: a little boy called Isaac. We all want to help and support this boy to achieve the best he can. We want to help him learn to sleep, perhaps learn to talk one day, to appreciate the value in communicating, to share his world with us, to support him physically and to encourage his development, to know if he is in pain. They write plans, discuss options, make referrals, supply questionnaires, have meetings, make phone calls  give us equipment and ideas and sometimes even work directly with him.

But meanwhile, without any training or degree, without any agenda or targets to meet, there is someone very special supporting this little boy and who is working miracles in the background. While mum and dad sit discussing schools and development with the paediatrician a precious little one is helping her brother remove his coat and socks (he pulled his own shoes off long before!) and guiding him to the corner where the toys are. And when he starts getting unsettled, even for a moment, she is there opening his cup of juice for him, holding his hand and handing him new toys she knows he likes. While mum and dad discuss genetic conditions and family trees at the genetic clinic there is a little one sitting close by to Isaac working the portable dvd player for him, keeping him amused with Peppa Pig. She is looking at him, talking to him, touching him. Basic things that so often the professional don’t know how to do as successfully as a loving sister.

And in all the busyness of dealing with so many people in our lives I want to take the time today to mention the biggest support that Isaac has in his life right now: the love of his twin sister.

If Isaac wanders off she leaves her dinner in search of him “just making sure he is ok, mummy and then I will be right back”. If I get frustrated at him she will tell me softly “It’s ok mummy, he has autism and he doesn’t mean it”. If he splashes soapy water in her face for the hundredth time at bath time she will wipe it off and once again show him how to do “little splashes, Isaac, remember how I showed you.” When we were at a church service recently and Isaac was noisily rummaging through a box of pens and I placed my hand over his to quieten him down, his sister speaks up and says “he’s only little mummy, let him play.” When asked where she would like to go to she will tell you she loves the library not just because she loves books but because she knows her brother loves the automatic doors there!

I am so glad to have professionals supporting me and my family. I am thankful to God for each and every one of them and all they can offer but to young Isaac there will never be a greater support in his life than the love of his twin sister.

And I am so proud of her for that.

Here she is showing him how to climb the steps to go down a slide. How many professionals can do that?Image

“I’m sorry, he has special needs”

I found myself saying this to someone earlier today. I hate having to apologise or explain my child’s behaviour to strangers but sometimes he is so ‘out there’ that I have to say something.

On this occasion we were visiting a local supermarket restaurant and Isaac had wandered off (he won’t sit for long) so I had gone in search of him. To drag him back or even try to persuade him to come back and sit with us would result in a massive screaming match so I try to watch him and pick him up only when necessary. He would never cause willful damage and just needs to explore and move around as part of his disability. But today he was in full ‘autism’ mode and very excited. He was walking, flapping and being very vocal and became very excited when he saw two ladies eating something he liked the look of. They also happened to be sitting on a window seat which makes him even more excited (not sure why but it does). So I watched my 4 year old boy, who to everyone looks perfectly normal, walk up to this table flapping his arms and making noises and heading straight to their table. He then stopped, looked at their table from strange angles and clapped his hands like he was cheering them on. Had he moved on I could have coped with this strange behaviour and said a silent prayer that the ladies would not try talking to him and carry on like nothing had happened. But Isaac turned around and walked to the centre of the restaurant before immediately turning right back and repeating every action he had just done all over again to the same ladies at the same table. Oh dear. One of those moments you just know is going to end in tears.

I was still reluctant to intrude on my son and hoped his short attention span and sensory processing problems might lead him on to somewhere else quickly. But something about these ladies, something about their food or the seats they had chosen to sit in where clearly interesting to Isaac. He was off again. The ladies tried to ignore him but I defy anyone to ignore a strange child who comes to you when you are eating, flapping his arms like a bird, looking at you through strange angles and tilting his head to the side and then stops right at you and claps his hands wildly making strange noises like a seal.

So I went and explained. “I’m sorry, he has special needs”. Well I guess that was pretty obvious by now! I picked my son up, kicking and screaming and took him out. I never did get to finish my lunch. And I really don’t know what they thought of my kids behaviour.

I don’t like apologising for my children’s behaviour. But I have to. There are so many social ‘norms’ and rules that people expect both from other adults and children. They say people with autism don’t understand social rules. My child does not even know social rules exist! He looks normal (discounting the strange way he looks at things, the strange noises he makes and the flapping and clapping) so it is expected he will behave ‘normal’. He isn’t in a wheelchair or walking with the aid of a walking frame. He doesn’t wear hearing aids or even glasses but he still has a disability.

And I want him to have a life. I want to take him places and let him explore. I know there will be times like today when he is too ‘out there’ and draws attention to himself. I know plenty of people will have seen him today and passed judgement. On both Isaac and myself. I know some people will feel I allowed him to go too far today. It is a difficult balance. The balance of allowing him to be himself, accounting for his developmental age and disability and that of acceptable social norms and rules and preventing him from ‘disturbing’ others. I walk a fine line every time I take him out. But I will continue to take him out.

Every day I take him out I am going to have to say to someone “I’m sorry, he has special needs”. Some days I will be saying it with pride. He is my boy, even if I have to apologise that he has done something you don’t understand or that has upset you, I am proud he has made it into the shop in the first place. I am proud he is walking. I am proud he didn’t help himself to your dinner! Some days I will be saying it with sadness that society still isn’t used to seeing enough ‘different’ people to understand and tolerate disability in all it’s forms. Some times I will say it in embarrassment as his behaviour crosses the boundary of ‘acceptable’ (oh there are too many ladies bums and boobs he has now touched as we pass in the trolley) But other times I will be saying it to educate.

I guess today I said it for all of those reasons. Maybe I should just wear a t-shirt saying “I’m sorry, he has special needs” but then again maybe, just maybe, a combination of more education, tolerance and understanding plus perhaps my child slowly learning what is ‘acceptable’ would mean one day soon I will be able to take Isaac out in public without having to say “I’m sorry, he has special needs.”Image

I refuse to give up hope

img_6075

I’m hoping my son will sleep all night tonight. I am hoping he will let me dress him tomorrow morning without a full blown tantrum. I am hoping he might want to watch something other than Peppa Pig again. I am hoping I don’t get yet another call from his nursery.

Although these are all unlikely tomorrow I can still live in hope. When he seems developmentally ‘stuck’ I still hope. I live in hope that one day he will learn to talk. I have to have hope. Hope for today, hope for the future. I can’t and won’t give up on him, or his sister or life.

I remember hoping that one day I would have children. When I was asked at aged 8 what I wanted to do when I grew up I said “have a husband and children”. At such a young age I never doubted for a second it would happen. The husband came when I was 21 but the having children part was a long hard struggle. Every month I remember hoping that this was the month..but it wasn’t. Every time I bought a pregnancy test I remember thinking that this was the time. Every time a friend or a relative announced a pregnancy or gave birth I hoped I would be next. I lived in hope for so long that hoping became harder and harder. Have you ever been in that place? Hoping that things will change for the better but not seeing anything different? It is a very hard place to be in. It can be a very vulnerable place to be in too. I was so hopeful about having children that I was willing to try anything to make the dream come true. It became an obsession at times. I read books, I dreamt about it, and I thought about it day in day out. And many years later I am back in that place of hope again. The circumstances are different but the desperately clinging to hope is the same.

I have visited that hope on so many times that it has become a familiar friend now. I have become so attached to hope on my journey that I now realise I can’t go anywhere without it. I refuse to give up hope.

You see not that long ago I never thought my children would ever learnt to walk. Naomi required input from physiotherapists, occupational therapists, and a paediatrician and after a month of using a standing frame she finally took her first steps aged 2 years and 8 months. It was another four months later before her twin brother took his first steps. I am now hoping Naomi will one day learn to jump, balance on one leg and climb. I am hoping Isaac will learn to kick a ball, catch a ball and hop and jump. I hope one day they will both be able to join in physical games with other children their age. I hope they will be included.

Naomi has selective mutism. She talks great at home but seizes up in unfamiliar and stressful environments. I hope, with help, she will one day overcome her anxieties and let others hear her beautiful voice. She has so much to offer and so much to say that the world needs to hear. I have so many hopes for her brother. I really hope he learns to talk in a way that he can be understood. I hope he learns to communicate his desires to others to lesson his frustrations. I hope one day he masters toilet training. I hope he will learn self help skills and be able to live with some level of independence. I want to hope for so much more. I so want to hope that one day he might fall in love, drive a car, get a great job, get a degree. But right now my hope only stretches so far. In time my hope will grow. As he achieves more and more (and he will) my hope for his future will increase. What gave me hope when I wanted to have a family so much was medical treatments. I am so thankful for IVF. So thankful for trained doctors and nurses who carried out the treatment and midwives who successfully delivered my twins . Now I am thankful for specialist nurseries and schools, teachers willing to specialise in special needs children, physiotherapists, speech and language therapists, occupational therapists, paediatricians, and other parents walking the same road as me who all give me hope. Hope that one day things will change for the better. Hope that one day our lives will no longer be controlled by autism, neurofibromatosis and learning difficulties. Hope that we can overcome difficulties and trials as a family and face a future that holds wonderful things for us all. I refuse to give up that hope.
Image