This is my ‘normal’

This is my ‘normal’

The intense sadness is beginning to ease now. Waves of heaviness still creep up on me at times but I cry, wipes my tears away and face another day with a smile.
Maybe I am getting to that point of acceptance?
Maybe I am realising it isn’t the end of the world and I still have two beautiful, amazing children?
Or maybe it has all just become ‘normal’?

I looked back on some old videos and photos this week. There were happy moments of my children playing, flapping moments at lifts, lovely memories of my daughter singing, and too many photos of my children eating! Reminders of how things were and a stark reminder that in many ways things are just the same.image

My son still has his chubby cheeks, big brown eyes and cheeky smile. My daughter has stunning golden hair, piercing blue eyes and beautiful petite features.
And my son is still not speaking…

This is my ‘normal’.

Since my children were months old I have been trailing them regularly to hospitals and clinics. We have so many professionals involved they have to add extra chairs at every meeting. If we decide to change something, if my children have medical issues arise or don’t eat their dinner for a couple of nights I feel I have to call everyone to keep them up-to-date. I have phone calls from schools, people dealing with our children, and others who have just received referrals about them on an everyday basis. We have to take our mobiles everywhere and be available to pick our children up at short notice at any time. Every week I have to discuss with transport about times my child will not be at school due to appointments.

This is my ‘normal’.

I have visuals in every room of my house, we have regimented routines, I read the same bedtime story every single night. I make the same dinners, in the same way, at the same time every week. I buy my children the exact same shoes in the next size hoping they won’t notice I have changed them as their feet grow. We visit the same places we have been to before. I use google street map to show places before we go there and I have become an expert at knowing where every single lift is in every shopping centre within travelling distance of my house. I spend hours watching hand dryers with my son because it keeps him happy.

This is my ‘normal’.image

I can’t tell you if, or when, my son may speak. I can not tell you if, or when, my daughter may overcome her severe anxiety or be able to speak in school. I can not say if, or when, my son will ever stop wearing nappies. I do know my son is unlikely to ever attend mainstream school in any capacity. I have no idea if he will ever learn to read or write. I have no idea if his tumours will grow anywhere else in his body or if his seizures will remain stable.
I live with uncertainty. But I also live with intense gratitude.

This is my ‘normal’.

I am thankful for everything. I celebrate the mundane. I kiss and hug my children in private and in public without caring what anyone thinks. I smile because I have a thousand reasons and more to cause me to. I laugh with my children. I treasure life and find enjoyment in everyday moments. I take pictures of my children like tomorrow is not guaranteed. I love with all my heart because my children have taught me too.

This is my ‘normal’. And normal is good.

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When someone knows your name

It takes just one person to make a difference. Someone to care, someone to action something, someone to notice. When someone knows your name it changes things. And what can seem a little thing can often have major significance. Just because someone knew your name and was willing to care.

Take this week for example:

Safety adaptations at last!

We have been pushing for some safety adaptions to our house for almost a year now. Little adaptions that could make a huge difference to our quality of life with two disabled children. It felt like we were getting nowhere until one person came to see us this week. This professional has been working with my family for months now doing home visits and spending a lot of time working with us to help us. She works for the social work department but isn’t a social worker. She noticed a record on our file that said ‘mum seems to have hurt her knee’ and so she was expecting a little graze and nothing more. Not crutches and a knee splint and trips to the local hospital. She left promising so much. And it happened! Within two days we had someone out doing this to the front of our house:

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And it is making a huge difference. To me, to Isaac, to Naomi. Even when the knee injury is long forgotten and the children are grown up these railings could still be there. As a sign someone knew my name and was willing to do something to help. It really doesn’t take much to touch another life.

Speech therapy finally!

Then there is the speech therapy story about Naomi. Naomi’s name was first known to speech therapy in March last year when she was referred by her paediatrician. They agreed to put her on the autism pathway and refer her for diagnosis but having seen her in a clinic session just once she was then suspected of having selective mutism. So her name got forgotten. It became an anxiety issue rather than a speech issue and her name was no longer an active case. No-one seemed to know about her anymore. She might have had an annual review but as the therapist was about to go on maternity leave it would depend on her name and case being transferred. And then we moved house. So we applied again for speech therapy as we were now in another town. We waiting until her name reached the top of the waiting list and then we recieved a call from a therapist. It was a thorough call, but at the end of 45 minutes her name was still not getting put forward for therapy. I still felt they could help, nursery felt they could help and her educational psychologist wanted them to help. But with the thoughts of selective muteness still there their hands were tied. I continued to fight and push for the service but I was getting nowhere.

Meanwhile the original therapist had her baby. And time passed. Her baby moved onto solid food, leant to sit up and crawl and even said his first word…while my 4 year old still had no confidence to speak in nursery. But then something amazing happened. The therapist returned from maternity and on going through her files came across my daughter’s name. She went that extra mile and through detective work managed to get our new phone number and called me for an update. She knew my daughter’s name! Do you have any idea how amazing it feels when someone remembers you? And wants to help. So we had a phone discussion and I became quite emotional. Because this is my daughter and I know she needs support. Because I had been fighting so long for something that I was beginning to think might never happen. And all of a sudden someone remembered her name. So Naomi’s notes will now be transferred over with a covering letter saying she should be fast tracked for therapy as soon as a therapist become available. Never give up fighting. Never stop praying for breakthrough.

Junk mail will never be the same again

You can tell junk mail straight away. Why? Because they don’t know your name! And like most people, we get our fair share of ‘junk’ put through our door. This week we had a catalogue delivered. The kind old people usually get (perhpas those adaptations we had done might work against us here) that would usually only get filled in that round filing cabinet also known as a recycle bin. But on my way to the bin the phone went and I temporarily placed the brochure on the coffee table. My son has been eternally grateful for that call. Because I forgot all about that magazine until he came home from school. And he spotted it. And he certainly never thought it was junk in any way! The magazine in question was from a home delivery company specialising in prepared meals delivered to your door. The prices were immaterial to my non verbal autistic son but the bright, colourful, mouth watering pictures of the meals were like heaven to him. Nothing I could have bought him from any toy shop or book shop would ever be of so much interest to him than this item of mail. He turned the pages one by one (a very recently acquired skill) looking at every picture

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and when he found one that really interested him he flapped and became vocal:

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and he even allowed it to be a shared experience. There was something so beautiful about this moment when he took dads hand and placed it over the pictures he wanted to share with dad. He has only ever did this with mum before. He rarely lets us into his world. Shared moments like this are rare and therefore treasured.

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That book went to bed with him, went to school with him and even came to church with us. But we knew it would eventually get ripped and we would have a distraught child. So dad emailed the company and asked them if we could have any old brochures and what our son had done with their catalogue. Until then the company never knew our names, or anything about us. We were a number, a random house to deliver to, just a potential customer among many hundreds.

They have since called us and emailed us. And they have prepared a ‘goody bag’ for my son. His name has been the talk of their office this week. They have even offered to send samples of food to his special needs school. Ok, so the cynics reading this might just think they have found a new business venture. Or they might actually feel that they could make a difference.

But to me it is special however you look at it.

It takes just one person to make a difference. Someone to care, someone to action something, someone to notice. Someone to know your name. We all need people like that in our lives. And we can all be that someone to someone else.

And you know what? God knows your name too.

“Before I was born the Lord called me, from my birth he has made mention of my name” Isaiah 49:2

That is really amazing!

What do you mean she has autism?

Sometimes a child’s disability can be so obvious.We know a child confined to a wheelchair requires support, or a child who is blind or wearing hearing aids may need extra patience and help, but what if the child is accademically able and looks like any other child? They don’t flap, they follow instructions and they are in mainstream education. But stratch beneath the surfice and you might just see that they DO have a disability. Often a hidden disability at that: they are on the autistic spectrum.

This is my daughter:

ImageShe is called Naomi and she is almost 5. She is the youngest of twins and her brother has classic autism, neurofibromatosis type 1, seizures, global developmental delay and a visual impairment. So she has a LOT to deal with! Her brothers difficulties are very obvious so her challenges so often get overlooked. She is so clever, so verbal at home and so co-operative, that her disability gets hidden.

What do you mean she has autism?

She doesn’t flap like her brother, she looks at people when they are talking to her, she goes to ‘normal’ nursery, she’s a girl!

Well, yes girls can have autism too! And not everyone with autism flaps, or lines toys up all day or has a learning disability. Millions of people around the world with autism attend mainstream school. My daughter may be one of them next year.

But at almost 5 she is still in nappies. And until two weeks ago she only ever described people by the clothes they were wearing or as being ‘horrible’ or ‘nice’. In the two and a half years she has attended nursery she has never mentioned a child by name: until 10 days ago. She says she has a ‘friend’ but has only ever whispered to him. She plays beside him, not with him. He just happens to be in her group in nursery and likes similar activities to her. So in her mind he is a friend.

This last week we arranged for her to go on a play date to her new friends house. At first we had to stay. She eventually moved from beside me and went to the play room adjacent to where we were sitting. But she could not bring herself to talk to her friend. Her anxiety level escalated to the point she burst into tears. She had absolutley no idea how to socially interact with another child. It does not come naturally to her at all. And the different house and different toys were overwhelming.

With support and a lot of reasurrance she stayed for an hour without us. But she never spoke to anyone. She was no trouble but she didn’t play with her friend at all. Or his little brother and sister. She just found toys and played herself. She set up some toys and looked at them. We hadn’t told her new friend’s mum about Naomi’s challenges as we wanted to give her a chance to be herself and be just like any other 4 year old. But when we went to pick her up even the mum commented on how Naomi seemed very shy and withdrawn.

What do you mean she has autism?

She had no idea. Because the spectrum of autism is so big, because we don’t always think our child’s friends could have such a thing, because awareness isn’t at the level it needs to be yet, because she is a girl!

But yes she has autism.

She struggles to communicate outside of the home environment due to extreme anxiety. She rarely ever speaks outside the house unless mum is with her and even then only to people she is relaxed around. She has selective mutism. She has no confidence to approach people so can not communicate a simple thing like needing help to get her hands washed or her coat buttoned up. She is verbally able and understands almost everything but can not make that step to initate communication herself. She just freezes.

She get anxious and stressed at routines changing. Not quite to the same extent as her brother who could not, for example, have a bath in the morning because he would assume it was bedtime, but more things like changing teacher at nursery or coming home with mum rather than on the nursery bus. She cries if you change her nappy anywhere else other than on the couch she is comfortable with. She only likes to sit in one place in the lounge. She will only eat if sitting at ‘her’ seat at the dinner table. And certain things can only be done by mum, and other things only done by dad. Because that is just how it is. And anything else brings tears and heartache like you have ripped her world apart.

She plays the same games over and over. She will only allow things to be done a certain way. In her train set for example there can only be one train on the track at one time. It must do the entire loop of the track and then the next train goes out. And this gets repeated everytime. She could happily watch the same dvd’s for hours. If she plays with her toy kitchen the exact same meal is cooked 25 times or more in the exact same way. Toys often get set up and then just stared at.

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She had the order of those characters memorised and if one was moved she would burst into tears. In nursery her anxiety is demonstrated by sucking on her tongue continually like in this picture:

ImageHer co-ordination and gross skills are behind too. She can’t kick a ball, or climb or balance on one leg. She isn’t able to dress herself and never wants to run anywhere.

And she has sensory issues like so many others with autism too. Clothes have to be soft and fluffy and she gets very upset if she has tights on as the toes just never ‘feel right’. It is the same with shoes. They are too big, too tight, too small, too hard and just not comfortable. And she will become very aggitated if her pyjamas or top do not cover her arms, no matter how warm the weather is.

She is a very fussy eater. The skins of chicken nuggets, the bread covering of fish fingers, sausages without the skin, a little mashed potato, and the chocolate spread licked off of a sandwhich is her main diet. Chocolate buttons for a treat but never any other type of sweets and only orange juice or milk to drink.

And noise just soars her anxieties to record heights. If there is one thing she hates more than anything it is noise. And children running around. And going barefoot. So soft play is like a form of torture for her. Bouncy castles are another fear. And dogs, especially ones that jump up her or bark. Crowds. Intruding on her space. Scary TV programmes with loud animals and people with swords etc. The list goes on. And her anxieties become higher and higher. So understandably she needs a lot of patience and reasurrance.

And she lives by rules that can not be broken. Her brother must sit behind the driver in the car. Dad has to go out the back door of the house first. Her nursery bus MUST come before her brothers school taxi. Mummy must answer the phone, not daddy. If it is a call centre you must still say ‘hello, who is it?’ even when you know as this is the rules.

But you would never know by looking at my beautiful girl. She is sweet, quiet and no trouble to look after. She will look you in the eye when you talk to her and she is academically able. She is loving, caring, funny and brings me untold joy. She adores her brother and has so much patience with him. She teachers him and cuddles into him and talks to him even when he can’t say anything back. She is his carer, his guide, his support and his best friend.

All while having autism herself.

And that makes her one very special girl indeed!

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What do you mean she has autism?

Autism is just part of her. Have patience and understanding with her but never ever underestimate her! This girl is very precious indeed.

I refuse to give up hope

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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.
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The journey thus far…

So this is my first blog.

I’m a 30-something wife, mother and Christian from Scotland. All sounds pretty straight forward but it is anything but.

This year I will have been married 15 years. When I married I expected children would follow soon after. They didn’t. My husband and myself read books, went to doctors, prayed, believed and bought more pregnancy tests than my local pharmacy sells in an average month…but it didn’t happen. Tests revealed numerous problems and finally we were placed on a waiting list for IVF treatment. I had no idea at the time just how many ‘waiting lists’ my family would be on in the years to come. God was clearly preparing me for a longer journey than I ever thought possible. I learnt so much during that 10 year infertility journey but at the time it seemed like never-ending. Deep down I must have had faith as I started to knit and made some faith boxes full of little things for my babies- to-be. My greatest desire was for twins. Sometimes you just don’t realise the implications of what you ask God for.

I could write so much about that infertility journey but finally in 2008 that journey ended with the arrival of healthy twins Isaac and Naomi. Despite doctors saying it was impossible to have children and that even with IVF we had a less than 1% chance of it working, our treatment worked 1st time and I had a wonderful pregnancy (discounting sickness) and had a planned c-section at 37 weeks and 5 days. My life seemed complete. I was truly convinced I had reached the ‘destination’. I was doing what I always thought I was born to do.

I then entered a new world of sleep deprivation, nappy changes, endless feeds and baby vomit. I loved it! Trained in child education, I had dreams of these little babies reading before they were starting school, thriving in the education environment and achieving great things. All parents dream. It’s what parents do and part of the inspiring, cheer-leading, ego boosting role we are given when God blesses us with children.You expect cut knees, the odd bruise and even a number of falls. You expect them to say funny things you will tell them all about when they are older. You expect them to have friends, join clubs, go to the local school. You don’t expect classic autism, still in nappies at aged 4, global developmental delay, sensory impairment disorder, non verbal, neurofibromatosis type 1 and seizures. And that’s just one of the twins!

This blog is going to let you join in my journey in raising my two beautiful miracle children who both have special needs. It’s a journey of faith, laughter, tears and fun, and one which may just make us all look a little different at the journey we are on too.

The children are 4 now and recently our journey has intensified and became even more ‘adventurous’. Isaac was identified as having global developmental delay before he was even 2 years old. He never took his first steps until around his 3rd birthday. He still can’t speak at all. He is still in nappies. He won’t wear shoes or socks and eats more than I do. His sleeping is very erratic. He still drinks milk from a baby bottle and all his play is on a sensory level. Most toys are eaten, mouthed or licked. He loves his sensory area at home though and does a wonderful flapping, marching dance if shown a bag of lollipops. He is a fan of Peppa Pig. He was diagnosed as classic (severe) autism in July last year. He has eye problems which we thought were due to having a squint. However, he was diagnosed in December as having neurofibromatosis type 1. No, I had never heard of it either! In layman’s terns he has tumours on his nerves and these are affecting his skin, eyes and brain. He has brain tumours. Terrifying to write; challenging to live with. His tumours are not cancerous but they can not be removed. They need monitored regularly and we need to know if they are causing him any pain. Our biggest challenge is that he can not communicate that to us. He has no language and can not even point. If I even needed God to help me in raising my son it is now! His Neurofibromatosis is a genetic condition and in two weeks time our whole family will be undergoing genetic testing which may lead to further developments in our journey.

I’ve been holding on for a long time to the fact that his beautiful, loving and caring sister was doing so well. As long as I avoided other children her age I could reassure myself she was doing wonderfully. She can talk beautifully. She will sit and tell you stories from books for hours. She has memorized entire episodes of Peppa Pig. She is an ok eater and she walked at 2 and a half (after needing a walking frame for a few months to strengthen her legs). She plays with a large variety of toys and acts out wonderful stories. But she is terrified of other children, diagnosed selective mute last summer and has never bounced on a bouncy castle (too loud she says), can’t climb, is still in pull ups and has no friends. She craves the same routines we need to create for her brother. She is on one of those infamous things they call ‘waiting lists’ to get assessed for autism too. Until last week I still believed she would attend mainstream school (although I did want her deferred for a year). Last week her name was put forward to be considered for additional support needs education. She’s her brother’s hero, carer, defender and best friend. She sings ‘Donald where’s your trousers’ whenever her brother strips off his clothes. She makes me laugh daily. She has the sweetest, kindest nature and always says please and thank you.

So this is our journey so far. A journey of hope, faith, special needs and special prayers. A journey I am willing to make public in the hope that I can raise awareness of autism, share some thoughts on life and maybe encourage you along the way. I am a faith-mummy. I needed faith to have my children and I need that faith daily in raising them. Every day is an adventure and I hope you will come on the journey with me…

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