Being mum to an anxious child

What is it like being mum to a child with severe anxiety?

It is helping her downstairs every morning despite the fact she can do it herself. It is reassuring her, yet again, that she won’t fall just because once, several years ago, she heard mum fell down the stairs and hurt herself.

It is encouraging her to dress herself when she is afraid she may fall over because that happened once before and she never forgets.

It is reassuring her that her clothes have been washed and that she has worn them lots before and said they were ‘OK’. It is showing her, as always, that the labels have been removed so they won’t hurt her, the trousers are soft enough and the socks have no sharp bits. It is telling her she is beautiful so often in the hope she will one day believe me.

It is letting her see the breakfast cereal in the box otherwise she will refuse to eat it in case you have somehow bought another brand by mistake. It is pouring out just the right amount in case some accidentally spills over the bowl because she lives in fear she may somehow get in trouble even though she never has.

It is brushing her teeth religiously because the dentist said she should do it twice a day and she worries what will happen if she doesn’t.

It is walking to school making sure we avoid uneven ground because she may just fall and hurt herself and that would be a disaster.

It is going over and over all that the day at school holds because she is worried you may have forgotten her PE kid (we checked three times before we left the house) or she may have done something not quite perfect in her homework the night before. It is the heartbreak of watching her become mute as she walks through that school gate holding your hand like you are sending her into the lions den.

It is watching her walk (never run as you may be pulled up for that!) to her line, avoiding eye contact or body contact with any other child in the playground in case they say something that upsets her or they accidentally touch her. It is looking at her standing facing the front, arms straight by her side like a soldier as she lines up, terrified she may lose points for her class because she is not forming a straight enough line.

That was just the first hour of our day.

My daughter will bite her lips, chew her tongue, barely eat or speak but conform to everything school expects of her. She will inwardly break her heart if she spells one word wrong in a speaking test (and break down about it that night at home), she will freeze during gym lessons when they ask her to stand on a bench for fear of falling. She will take a school dinner as she doesn’t want to be seen as different yet she will hardly touch it. She would never ask for someone to help her cut it up as she is too anxious she may get in trouble for doing so. She would even eat something she was allergic too if she felt it would make a teacher happy.

Living with that level of anxiety is not healthy yet so many children experience anxiety on that level daily.

I can reassure her. I can encourage her and prepare her for change, but I can not take her anxiety away.

Watching her refuse to eat because she had a wobbly tooth was awful. Hearing her cry because she can not read a word in her new reading book breaks my heart.

Sometimes you may see me climb on soft play with my seven year old and think I am crazy. Sometimes you may hear me say I laid beside my child until she fell asleep and you may feel I need to let her grow up. You may see me lift her on and off escalators and think I am keeping her a baby. If you knew I held her in my lap and cradled her and wiped her tears last night would you perhaps think I was over protective?

I am not an overly anxious person and it is so hard to parent a child who fears every moving animal is out to bite her, every child is out to hurt her, every adult is wanting to get her into trouble and every broken toy is her fault.

Her anxiety is huge. Her worries are real.

Today I will do my best to help her as I do every day. Tomorrow she will be just as anxious and I will try yet again to help her. We get through one day at a time.

I acknowledge her anxieties but I also help her overcome them.

That is the role of a mum to a child with severe anxiety.

That is what it is like being mum to an anxious child.

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The day my five year old changed her class without saying a word

imageLike every mum I was terrified when my baby started full time school. Even as I dressed her in her shirt and tie I wondered yet again if mainstream was going to be the right place for her.

I had more reason than most to worry as she left that day still unable to dress herself and not yet potty trained, diagnosed with autism and selective mutism, and despite having had an extra year at nursery already, she was still one of the smallest children.

On top of all that she carries a heavy burden wherever she goes even at the tender age of five.

I often wonder if professionals realise the daily weight that siblings carry on their shoulders every day?

As well as her own diagnosis my beautiful blue eyed girl is the twin sister of a boy with even more complex needs. He has tumours, severe autism, challenging behaviour, global delay and is non verbal. She has to live with that at the fragile age of five.

How would she manage without him as his school placement was 14 miles away from hers? How would anyone know to meet her personal needs if she was unable to talk? Would her anxiety, vulnerability and tiny size make her an easy target for bullies? Would her home life stress cause issues with her learning?

I worried. And wondered.

But something changed that first week she started school. And one day her classroom assistant told me that my special, fragile, silent girl had actually changed that whole class of new starts without even saying a word.

It turns out there were two other children in her class who were also silent, but for a very different reason: they were unable to speak English. For ease of teaching my daughter was sat next to these children so the one assistant could help them all. But none of the teachers spoke Russian and everyone was still trying to work out the best way to help this group of children who due to inclusion had all been placed in the same mainstream class.

The teacher taught a lesson and the children sat on the floor. My baby girl sat and listened intently and returned to her seat. The class had been asked to draw a picture and write their names at the top of the sheet. As all the eager children started to pick up pencils and pens Naomi just sat there. She watched as the classroom assistant struggled to help the two others who had no understanding of what had been asked of them.

As another child momentarily distracted the assistant Naomi got up from her seat and walked over to the two children. She took the water holder from the middle of the desk and pulled it beside them. And silently she took each child by the hand and pointed to their own name and then pointed to the top of their paper. She then picked up a crayon and began to mark their paper every so slightly and pointed to what the others were doing.

She waited while they took in her attempts to communicate without language and slowly they began to copy down their name and begin drawing. She looked at them and smiled. And only then did she return to her own chair to try and write her own name.

The classroom assistant cried. The teacher watched.

The most unlikely child in the class had taught them all a lesson that day. The child diagnosed with a communication disorder actually showed them all how to communicate.

She still does not know one word of Russian. But living with a non verbal brother with complex needs taught her something that changed her entire class of children without her saying a word: it doesn’t need words to help people.

I still worry. But I know that in all she lives with she is somehow managing to turn ashes to beauty. And I could not be more proud of her.

This article was originally published on firefly and can be seen here: http://www.fireflyfriends.com/special-needs-blog/specific/raising-kids-with-special-needs-without-saying-a-word

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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.

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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.

Let silent words be heard

My children live in a different world to me. They have autism. I don’t. They order the world, understand language and process sensory feedback in an entirely different way to me.But because they were diagnosed at just 3 years and nine months and 4 years and 10 months old they were unable to tell me much about their world. So I took it upon myself to learn about theirs.

I bought so many books about autism. And read them all. Around 99% of them were written by people like me who do not have autism but who felt they understood what my children may be experiencing. I went to training courses about autism. They were all run by people without autism too, trying to explain something they have never lived with. But I did find out something very early on: no two people with autism are the same. I already had that figured out with two very different children both with the same diagnosis!

I wanted to know what it was like for my own two children. I wanted to know how best to help them and teach them. I wanted to be part of their world.

So I watched them. I sat with them. I held them. I listened to them even when it seemed like to everyone else there was nothing to hear. And everyday I prayed that one day they would open up to me.

This week my six-year-old explained to me a little about why she never spoke a word in nursery for the two and a half years she attended. Speech and Language therapists diagnosed selective mutism. I had no idea why my daughter was speaking so fluently at home but not at all outside of the house.

It was relaxed, accidental, and natural. As I read a bed time story to her and read a line that said ”Hi Tony!’, called Topsy, but her voice came out not quite loud enough’ (Topsy and Tim start school by Jean and Gareth Adamson). Naomi suddenly opened up. She knew how Topsy felt. She went on to share how that happens to her all the time: She wants to talk but the words just won’t come out of her mouth, how it was like the words just stuck in her throat, and sometimes her mouth could not even open up. She was scared and worried that she would get a row. She was shaking because things were new and different and she seemed so small. Her voice was scared of new people and liked to hide and sometimes she was sure she was talking because she could hear herself but now she realises it was just her brain and not really her mouth. She was worried that once her voice did come out she may not be able to control it and it might never stop. It was like someone jumped into her mouth sometimes and just stole away all the words she was trying to say.

Here I was suddenly getting a glimpse into her world. We had read this story so many times yet tonight she suddenly realised she could identify with one of the characters. And more than any book, or course, or professional input, I got to learn so much more about my daughter, her anxiety, her selective mutism and her autism.

Naomi’s twin brother is totally non verbal. I may never ever get the privilege of a night like this with him. I may never know why he bites himself, insists on mashed potato and gravy at every meal, only ever wants to wear a red school jumper or what keeps him awake all night. So I will have to learn to listen to him some other way.

Last week there was a social media campaign to support and bring awareness of non verbal children, especially those with autism. You could say that for a long time that applied to both my children, but for very different reasons. When Naomi heard about it she was desperate to be part of it. For her brother. But also for all those other children who like her have struggled to communicate with selective mutism.

I struggled to write this week. Writers block? Maybe. Or maybe I just needed to be quiet for a while and let those silent words be heard.

My children live in a different world to me. Both of them want to tell me what it is like. Only one of them can now explain that with words. The other is silent.

But let us listen. Let us put our fingers over our mouths to keep them from speaking. And let those who are struggling have a change to tell us in whatever way they can. Let us hear from our own children. Let us hear from those who struggle:

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Does her anxiety look big in this?

image Last year, a week before her fifth birthday, my beautiful daughter was diagnosed with autism spectrum disorder. She understands the world very differently. She struggles with changes to routines, has sensory issues, has balance and co-ordination issues, loves repetition, and struggles a lot in social situation, but more than any of these she mostly struggles with severe anxiety. She is anxious every minute of the day, and even through the night.

But unlike physical difficulties which can be plain to see, anxiety is a silent, hidden disability.

Can you tell from her photo she struggles so much with anxiety?

It is well-known adults can have mental health issues. Most people will know someone who seems that bit more ‘stressed’ or anxious about things than others, or who seems very low in mood. There are even medications, both prescribed and off the shelf, for adults who struggle with anxiety, sleep disorders and depression. But what about a young child whose anxiety is just as crippling, whose fears are just as genuine, and who struggles daily with stress?

For so many children with autism this is daily life. The ‘traits’ of autism manifest even more when anxiety is increased. With my daughter that means she clings to me even more, struggles even more with sleep and lines up her toys even more than normal. She withdraws into herself more and her eating becomes even more restricted. She is snappy, uninterested in life and always exhausted. Just like if an adult had no appetite, stopped sleeping, withdrew and had a low mood a doctor, or loved one, would notice something was wrong. Thousands, if not millions, of parents are watching their children struggle with the same thing and there seems to be so little help available.

We are fortunate to already have a diagnosis. We already have a team of professionals involved. Yet when my precious baby girl became so anxious at the transition of starting school she began having severe panic attacks and nose bleeds no-one seemed to know how to help her. Advice was so conflicting from keeping her off school to insisting she went to learn to face her fears. Those who observed her in the school environment reported back that her anxiety was so obvious that she spends all day chewing her tongue. She may be in a mainstream school but I know in my heart it would not matter where she was educated she would still be on constant high anxiety.

So while others have left their infants by the gate from the second day of starting school and went home crying in pride, I had to wait fifteen weeks later before my little one felt ready to take that step alone. Until then I had to hold her hand right up until the moment the school bell rang and she was lined up with all the other children.

Now she is panicking about all the changes involved in the run up to Christmas. Will I remember to come to the play, will she know what to do when her anxiety overcomes her seeing so many people watching the nativity, why are they going to a pantomime instead of doing reading and number work in school, what if a child is off and she wants to give them a Christmas card, why are they having a party, will she have to go see Santa….and so on. Real worries, real fears and causing very real stress to a just turned six-year-old.

I can reassure her. I can prepare her. But I need to balance that by not feeding her fears and allowing them to become even stronger.

She can tell me some of her worries. Many other children with autism can’t.

In two weeks time we have our first meeting with the children’s mental health team. We only got referred because ENT have completed all their tests and concluded her severe nose bleeds have no medical basis and they believe they are directly related to her anxiety. Then her panic attacks were so severe she was struggling to breathe some days. That was back in August and we are only just getting seen in December.

There are days when I hear her laugh and play and read her books to me and I wonder if this can be the same child who becomes distraught if I leave the room to use the bathroom. But you don’t always have to be sad to be stressed. You don’t always have to be house bound to be anxious. And you don’t have to be an adult to struggle with mental health.

We need to recognise that so many children with autism are struggling with anxiety. And we need to have help to support them.

That starts by realising that even when we don’t see it, anxiety is still there: the silent, hidden disability.

Can you see it? Does her anxiety look big in these pictures?

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They can’t just “get over it”

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My son has Neurofibromatosis type 1: he can’t just ‘get over it’. He has it for life. The implications of it are unknown.
My daughter has autism: she can’t just ‘get over it’. She has it for life. How it will affect her in the future is as yet unknown.
My son is non verbal: he can’t just ‘get over it’. He may be non verbal for the rest of his life. He may not be. We just don’t know.
He also has autism, visual impairment and learning difficulties. You don’t just ‘get over’ any of those either.
My children are both incontinent. Well, guess what, they won’t just ‘get over’ that overnight either!

It is hard to understand. I have hope because I need to have hope. But there is no magical cure. The future is uncertain and I have to live with that.

But one thing I do know is that my children are doing everything they can to make the best of their lives. So when they get upset or struggle or become overwhelmed it isn’t because they have given in, or because they are spoiled or want their own way, or because they want an easy life. It is because they have disabilities; disabilities that may be unseen but are very real. You may look at them and think they are fine. But they are not.

The world is confusing and loud and overwhelming for them. They rely on support networks that others don’t need as much. They see the world in black and white. They take things literally. They overgeneralise. They look at things from a completely different perspective. They have sensory overwhelmed from places that cause others no issues. They have anxiety to a scale many will never be able to imagine. They struggle with simple everyday tasks that we take for granted. Everything is an effort, a big deal, a massive achievement.

My daughter lost her comfort blanket and she was distraught. It was impossible for her to ‘get over it’. She had had the same cloth since she was a new born baby. No other cloth was good enough. Nothing else smelled, felt, looked or could offer her comfort like that cloth. Maybe all children have to grow up at some point. Life has disappointments. Special things get lost. But a child with autism can not ‘get over’ anything just like that. Her whole world turned upside down. Her sense of security and comfort disappeared. Her brain had to process that her cloth was no longer available. The depth of sadness this brought was tangible. It was found again but her faith and security in life remains uneasy. Something of paramount importance to her was lost and now she worries that something like that may one day happen again. That is a huge amount of stress for any 5 year old to carry around all day. She will never just ‘get over’ something like that. Her world changed. And I can never fix that for her.

My daughter is coming home from school in tears. She has a long list of things causing her distress. She isn’t just wanting her own way or demanding she is someone special. She can’t cope with noise or crowds or new unfamiliar routines. She is struggling to keep up with her peers and in the midst of sensory overwhelming in school she is finding listening to a teachers voice a real struggle. This is not made up stories. This is sensory processing difficulties. This is autism.

I took her in the front door of the school this week to avoid the playground. Another parent spoke to me when I came out. In her opinion I am spoiling my daughter. I am babying her. She just needs it get on with it like all the other children do. She just needs to ‘get over it’.

If only….

If only my kids could ‘just get over it’…

They may learn to cope better as they grow. But they will always have nf1, or autism, vision impairment and learning difficulties. The same way others have health conditions, mental health issues, struggle with bereavement or loneliness. Be patient with people. Have compassion. There are very few things in life people ‘just get over’. Most people are trying hard. I know my children are.

“Be completely humble and gentle; be patient, bearing with one another in love” Eph 4:2
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World autism awareness day

It just would’t seem right as a mother of two children with autism to let this day pass without writing in my blog.

I had so many plans to write a positive, upbeat blog about how great my kids are, how much autism has taught me and how proud I am of them.
Yes that is all true but yet ironically, today of all days, autism has hit me right in the face again.

It started off so well with publishing a video on social media that was received well. Both kids got off to nursery and school easily enough and I even got to get a hot cuppa without the phone ringing or the door bell going. Gosh, I even managed a shower!

But then my daughter came home from nursery with that look that told me her morning had been a struggle and she was right on the edge of crying. Call it mother’s intuition or whatever you like, but I just knew this was a ‘big one’. This was something that was going to take days or weeks to recover from. And I was right.

First thing I noticed was the smell. My poor baby girl had been in a dirty nappy for hours and it hadn’t been noticed. She is in a busy mainstream nursery where she doesn’t speak but complies with requests without question, and is hugely anxious about approaching or interrupting staff. So she would never ever say she needed changed. After being refreshed and fed she told me exactly where she was when she ‘went’ and what she was playing with (she is a girl of detail) and how she looked at a member of staff but they ‘never noticed me’. You see, this is autism. She has no idea, even at 5, that the staff can not read her mind. They can not understand that she needs changed simply by her looking at them. And she did say they never even looked at her back as they were ‘busy like they always are.’ So my baby just carried on with a soiled nappy on hoping someone would notice.

It came to snack time. She rarely takes snack but staff are trying to encourage her more. So they succeeded and she sat reluctantly on a chair even though this was uncomfortable. Why? Because the ‘lady told me to sit down’. She was then offered strawberries which she took because she was told to. But she hates strawberries. They make her sick. So she naturally left them on her plate. Staff (who understandably have no knowledge that these make her sick as I forgot to mention it when enrolled her 18 months previously) encouraged her to eat them. So she did. Even though they make her sick. Why ‘because the lady said to eat them.’ Her autism makes her compliant to rules, even if those rules mean she will be in pain and discomfort. She has to obey. That is the rules. That is what you do.

At circle time she went to the carpet. By now she was sore and very reluctant to sit down. So she stood and looked at a member of staff. A silent plea for help. A silent hope that they could read her mind. They told her to sit down. So, despite the pain this caused, she sat down. ‘It made me sad mummy’. Oh baby, it makes mummy sad to hear this too.

She then sat on a bus for 45 minutes to come home. Still no-one noticed. Until finally she got home and it all came out. And shortly after telling the story she was sick. Then sick again. And again. ‘I ate strawberries mummy and I always get sick when I eat them.’ She knows. But would she do it again? Yes she would. Because she can’t seem to break the rules. If someone tells her to do something she will. She is obedient without question, even to her own pain.

She won’t be back to nursery for weeks now as she will be off sick tomorrow and maybe the next day too. And then the schools are off on holiday. Perfect timing as she never wants to go back.

I thought we were getting somewhere. I thought we were getting closer to going to mainstream school. Today reminded me we have such a long way to go yet.

I so wanted to be upbeat on this world autism awareness day. But autism doesn’t take a day off. Autism hits you when you least expect it. Autism can still be hard even when you accept it and embrace it head on.

This isn’t about the nursery getting it wrong today. Things happen. People are human. And they can’t be mind readers like my daughter thinks they are. This is about a little girl who is vulnerable, hurting, and confused.

This is about a little girl who is now sick. This is about my heart breaking once again. This is autism. On world autism awareness day.
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The power of a friend

To have a friend. To share laughter, smiles, dreams, moments in time. To have someone to hug. Someone who understands. Someone who wants to be with you. Someone who looks out for you, seeks out your company. Talks about you. To see a smile on someone’s face when your name is mentioned. To know someone cares and loves you.

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This.

Well what can I say? My daughter has found the magic that we know as a friend.

I have spent hours reading her a social story written by her speech therapist. To the point both Naomi and myself have it memorised. “I can say ‘hi’ to someone and take their hand. We can have fun playing together.” How simple does that sound? But when you can’t get that little word ‘hi’ out because you are so frightened, so anxious and overwhelmed. When you see so many faces of children that you can’t work out who the ‘someone’ could be. When you don’t have the courage to touch another child let alone take their hand. So we read the social story, we talked about it and we even tried to act it out. But we still had a child coming home from nursery with hands on her hips complaining ‘mummy, they want me to talk to other children. Why would I want to do that?’.

How do you explain the beauty of friendship to a child who loves their own company more than anything else? Friendship has to be experienced to see the true wonder of it. The healing that can come through having someone want to be with you. The joy that comes from sharing life with someone else.

And then Sarita started nursery.

Naomi couldn’t say ‘hi’ like her story said she should. So she smiled instead. And Sarita smiled back. That was 9 weeks ago. Now one three year old child has changed my daughters life. She started talking to Sarita on the bus. And then began to talk to her in the nursery room. And one day her nursery teacher asked Naomi a question. And because she had broken her silence by talking to her friend, with Sarita right by her side, my daughter found the strength to answer the teacher in a voice that could be heard.

With Sarita sitting beside her, Naomi has started taking part in snack time. Her little voice can now be heard at singing time mingled beside the sweetest voice of her friend. Naomi is choosing to play beside her friend rather than hiding in a corner looking at books. Where before Naomi would watch on while others participated, she is now following the lead of her friend and joining activities she has never touched in almost two years in the nursery room.

The girls have photos of each other in their homes. I can’t begin to explain just how much Sarita and her siblings and parents mean to me in the short time I have known them. I can not even explain the amount we all have in common. The girls could not have found a more perfect friend in each other.

And my heart rejoices. My 5 year old is experiencing the power of friendship. And in doing so she is linking two families, helping two mothers walk together and help each other, encouraging many and bringing healing.

The power of a friend.

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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.

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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:

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He shows me he wants more by outstretching his arms:

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He shows me he likes something by touching it:

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

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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:

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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.

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.