Show me…when the words won’t come

Have you ever been to a card shop but you just can’t find the right card? When it’s not a simple ‘happy birthday’ or ‘merry Christmas’ moment or perhaps even a crisis or bereavement. When you read the words on the cards but none of them seem to convey what you want to say. I guess that is why there is a market for blank cards. But then sometimes you just can’t think what to write yourself. Sometimes words just won’t come. If you could only just see the person and give them a hug. Then you could show them you care when the words won’t come.

If this is how I feel as an adult at times when I have a vocabulary of thousands of words at my disposal and an understanding of language that allows me to use those words to convey meaning, thoughs and emotions, it is no wonder children with limited language and understanding find putting things into words so hard at times.

My children are almost 5. My daughter has good understanding of spoken and written language for her age and communicates well at home. But there are times when her words just won’t work. When her anxieties take over and she is unable to communicate. Outside of home, without mum and dad for support she can find it crippling to use spoken language to communicate. I am a fluent communicator and able speaker but everyone can feel that anxiety at times and struggle to get the right words. Under pressure, with a camera filming you, faced with hundreds or thousands of eyes upon you, sitting close by someone you have strong feelings for but have never yet mentioned to them, in court having to answer questions in quick fire, meeting a stranger for the first time, and many other situations beside.

For Naomi we had a situation a few months ago when she came home on the nursery bus with tears sitting behind her eyes just waiting to fall down her cheeks and onto her clothes. Even with her language skills she was unable to tell us what had happened. So I held her, looked into her eyes and slowly said ‘show mummy’. So she went straight to her nursery bag and brought out her diary. In it was a card to say she had had her teeth polished at nursery that day. For two hours she had detested the taste of the polish in her mouth to the point she had felt sick. She didn’t spit the clumps out as she knows spitting isn’t nice. She had a drink, we got out all those horrid tasting clumps of polish and we shared a cuddle. She showed mummy the problem when her words would not come. And I was able to put it right and comfort her and show her all was well without using many words too. A hug and a smile go deeper than words ever can.

Isaac can’t speak. Now and again, mostly when very upset, we will hear the occassional ‘mum’. We have tried, speech therpists have tried and many other professionals have tried. But so far the words won’t come. So he shows me.

He shows me he is hungry by going to the cupboard and getting a plate:

He shows me he wants more by outstretching his arms:

He shows me he likes something by touching it:

He shows me he loves me..even when the words won’t come.

I tell my children all the time I love them. But I also show them. I tell my husband I love him everyday too. But I also show him. And he shows and tells me too. This week marks our 15th wedding anniversary. Long before the wedding, long before we ever had children, before we even confessed our feeling towards each other we had a special moment. Our relationship started with a hug. An embrace that conveyed way more than any amount of words. No words can ever adequately convey the feelings and emotions of a first kiss. 15 years later there are still many moments of silent love. When the house is quiet and he makes me a cup of my favourite hot drink the way he knows I like it. When I am in a shop and see the book he has been looking for for months and I buy it as a surprise. When we have got through another day of appointments and stresses and screaming and that smile and hug at the end of the day says more than the inside of any greeetings card ever could.

When that smile and the light in the eyes shows love when the words won’t come:

Cards are great. But sometimes there are no words to describe what you want to say. And sometimes you just don’t have words to start with.

So share a hug, send some flowers, smile, laugh together, treat someone, listen, spend time with people and show them you care. Actions really do speak louder than words. I know my children love me even though neither of them say. Even though one has the words and the other one is non verbal it doesn’t matter because they show me…even when the words won’t come.

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:

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

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

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.

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!

When the carer needs care

Wake up, eat, go out, come back, eat, play, sleep. Simple really.

And then mum went and fell down the stairs.

Kiss it better, put a plaster on it, don’t think about it and it will go away. Simple really.

Stop! Yes, you read that right: mum went and fell down the stairs. This isn’t a kiss it better situation. or a simple plaster affair. This is serious. This involved accident and emergency departments, a splint, bruising, pain killers and crutches. But it could have been so much more serious. And for that I am eternally thankful, despite the pain.

So what happens when the carer needs care?

By defination of a carer you are supporting and looking after and seeing to the constant needs of another. You are the lifeline, the advocate, the stronger one. The carer sacrificially puts the needs of the other person before their needs daily, whether this is in a paid capacity or not. And for many, like me, this is a 24 hour a day, 7 days a week job. There isn’t sick pay, or holidays, or even lunch breaks. Training is in your ‘spare’ time and has to be juggled around appointments and therapies and the care needs of the person you support. Parent carers like myself work behind closed doors, silently doing all that needs to be done to ensure the welfare of your disabled child or children is put first. We carry out therapies because there are not enough hours of speech therapy or physio or nursing care available. We administer medication as efficiantly as any nurse and our patients date of birth, allergies and personal information rolls off our tongues as easily as our own does. We fill in forms and specialise in the day to day care of conditions we have had no previous education in. We are nurses, therapists, entertainers, interpreters, cleaners, cooks and drivers on a daily basis.

But every carer is human. Accidents happen. We have emotions and feelings and sometimes, actually more often than we realise or want to admit, carers need care too.

So for me that has meant a period of rest and reflection. And allowing others to love and support me. And that is something I have found hard. Not only because I am used to being the strong one but because my beautiful children have found it very challenging too. It may sound a cliche but seriously my heart was often in more pain than my pysical body at times.

While I dealth with this:

my boy reacted like this:

Because he has autism and can’t cope with change. Because he is at the stage of requesting things by taking mum’s hand and leading her to what he wants and he can’t transfer that skill to anyone else. Because he has global developmental delay and can’t understand that mum is injured. Because he can not tell us what he wants or what is going on as he has no speech. Because he is just a child after all. And he gets the care, not mum. It’s hard to realise that person who does your washing and ironing, keeps your house clean, puts food on the table for you, changes your nappy and works the television is, after all, just like you and has feelings and pain and needs help at times. Gosh, many a teenager still struggles with that concept so no wonder a four year old can’t grasp it overnight!

So when he went to his room we found he had smeared. All over walls, bedding, toys, himself..well everywhere really. The mess, the smell and urgency to get him away before anything was ingested would be overbearing for anyone, but when you become soul carer to two disabled children and an injured wife, well it must have felt like the whole world was against him. In my eyes my husband is a hero. My admiration for a man who can face all that and still smile has just got so much stronger. But you would never known he had dealt with that behind closed doors. Because that doesn’t make news. It is just daily life. It is love in action.

And when we took him to a hospital appointment Isaac screamed. That ear piercing, get me out of here, all consuming scream. Continually. Because he was in his disability buggy, mum was on crutches and his sister was trailing behind. Because it wasn’t possible for one of us to supervise his urge to walk up and down in straight lines gazing at the ceiling lights. Because he was at a hospital and clinic he had never attended before and he hates change. Because we had picked him up early from school in order to go. Well, in reality for any number of reasons really. But the fact was he screamed. Continually. Even while we were trying to speak with the paediatrician. Hey, we are carers and parents and we are human too. It hurt our ears as much as it did everyone else. We needed headache relief like everyone else.

Do you ever stop and think that someone you know could be going through something like this behind closed doors?

He does sleep (albiet with the help of a supplement), and most weeks are not this bad. Thankfully.

But when I started blogging I said it would be an honest account. So this is life.

And then he does this:

He used a point for the first time EVER and actually tapped the ipad in the right place for the first time. His smile and the achievement and the love of his twin sister sharing the moment. Well, that is worth the screaming hospital appointments, and the smearing and the pain in my knee. That is why we care.

Injured knees mend, headaches from screaming ease, poo can be cleaned. Seeing a child reach a milestone is worth it. Hearing that first word makes it worth it. Knowing your child is breathing, eating and growing makes it worth it. It really is incredible to be a full time carer.

But the emotions and the intensity and the fact accidents happen and carers are human mean that no matter how big a smile a carer has, never forget that carers need care too. And that isn’t just because they are injured.

You never really know what is going on behind closed doors. Let someone know you care please. Hug, smile, do something nice for them, and don’t judge. It could be you they care for one day after all. Or you could find yourself being a carer.

Today has been a good day. There has been no extra cleaning, or extra high pitched screaming. No pain killers needed and the knee is improving. We all woke up, ate, went out, came back, played and went to sleep. Simple really.

But the week the carer needed care taught me that we are all human. And it’s ok to need help sometimes.

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:

She 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.

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:

Her 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!

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.