They never told me THAT at diagnosis!

imageThey never told me THAT at diagnosis!

So I am a ‘special needs mum’, more by accident than choice. I have six-year-old twins who have an array of medical and developmental diagnosis. There have been a number of occasions when we have sat down with doctors, specialists and psychologists to receive spoken, and later written, diagnosis and each time brings a huge array of different emotions. But over time you realise that while professionals may give you a ‘name’ for what your child is experiencing there is so much else they DON’T tell you. Here are a few things no-one told me when my children were diagnosed:

1. This won’t just affect your child. It will affect the entire family.
Having a child with a genetic condition, or a developmental disability or who requires on-going support, puts a huge strain on everyone in the family. Parents have to walk through their own private journey to come to terms with, and hopefully eventually accept, that life is not going to be quite how they planned it. And siblings have to cope with perhaps not getting the same attention they need or facing seeing their brother or sister go through things no child should ever have to. Grandparents, uncles, aunts, and extended family members don’t always know what to say or how to support and so sometimes appear to criticise or upset when perhaps they never intended. It is like dropping a pebble in the ocean and seeing it ripple out way beyond where it first dropped. No-one told me that at diagnosis. I wish they had. I may have been more patient with family if they had.

2. This will put a huge strain on your relationships.
Even couples who are incredibly close and resilient struggle when you add in the added complication of a child with a diagnosis. Blame, jealousy of the child’s needs, extra financial pressure and lack of sleep, make it so difficult to maintain a healthy relationship on top of the caring responsibilities of a special needs child. Then there is the strain put on friendships when you can’t make as many social events or you cancel things at short notice. Social gatherings such as weddings, parties, and christening become quite a burden to a family who can not readily get a babysitter for a child with additional needs. I wasn’t prepared for how a diagnosis would affect my marriage and my friendships. I wish someone had told me. I may have been more understanding if they had.

3. This will stretch your finances beyond recognition.
Raising children is expensive. Raising a child with any sort of diagnosis is even more expensive. Hospital visits cost not only in travel and parking costs but often in food, treats for your brave soldier and perhaps time off work. For many families giving up work to become a full-time carer is the only option and that brings with it a drop in income that never seems to get replaced. Private therapies cost and toys with the words ‘special needs’ in front seem to double or triple in price. Extra heating to keep a sick child warm, ongoing clinic and therapy appointments, carers, equipment, specialist clothing, continence products and replacing broken communication devices all put a huge strain on the financial situation of a family. I had no idea about this when we first had a diagnosis. I wish I had known. I may have been more prepared for it if I had.

4. Everyone you speak to will now be an expert.
When I had no ‘name’ for my children’s challenges people were happy to listen, offer a hug and at the most perhaps suggest a few things they thought might help. But mostly people just felt sorry for me or my children. But once we received that all important diagnosis (especially for some reason when one of the diagnosis was autism) everyone seemed to suddenly become an expert! We needed to urgently start this therapy or that therapy! It was because we had the kids vaccinated! It was the stuff we fed them! They knew someone who had the same thing and they took this vitamin or read this book and now their child is cured. And so on. We were judged, and corrected, and criticised for everything from the moment we mentioned the diagnosis! No-one told me that at diagnosis! I wish they had. I might have developed a thicker skin quicker if they had.

5. Diagnosis is the start of a journey not the completion of one.
When you have spent months and years fighting to get your children’s needs recognised and acknowledged, when you have been on waiting lists for so long you can’t even remember the person’s name who referred you in the first place, when you have put your heart and strength and fight into this one thing, you can easily see the diagnosis as the end of a very long journey. It is three years this month since we were told my son had classic autism, global developmental delay and severe learning difficulties. Three years on and I am still fighting his corner, still trying to get people to listen, and still pushing for more support. I naively thought everything would ‘fall into place’ after we had a diagnosis. Sadly that never happened and I have discovered it rarely does. They never told me that at diagnosis. I wish they had. I would have saved some of my strength and stamina if I had known.

6. There will be days or years later you will still be sad.
I expected to cry the day we were given the diagnosis. What I didn’t expect is that years later there would still be days I would look at my child and cry. That does not mean I am not a happy person. My children fill me with pride daily. They are achieving in their own way all the time. But some days I watch them struggle. Or see something another child does easily that they have yet to master (like talking or waving goodbye) and the tears come easy. And I have realised I am not alone. Some days I relive that diagnosis day and it stabs me in the chest as much as it did the first day I heard it. I don’t live there anymore but I still hurt. And that is ok. It’s just no-one told me that on diagnosis day. I would have kept some tissues with me had I known.

7. Diagnosis doesn’t change your child. Love does.
I looked at my child differently the day they were diagnosed. I saw a child struggling with medical issues or developmental issues and I worried for the future. I saw a life mapped out for them I never planned nor wanted and that broke my heart. I thought the diagnosis would somehow define them. But years later I realise that has not happened. As time has gone on people see my children simply for who they are not the name given to their communication difficulties or social struggles or medical challenges. When I introduce my children I just call them by name. That is who they are. That is who they will always be. They never told me THAT at diagnosis. Maybe if they had I would have realised it would all be ok.

They gave a name that day for the collection of difficulties my child presented with. But that was all. A name. A word. Something I could learn more about to help them. They took my breath away for a moment. But they never ever took my child.

My children are awesome. But they never told me THAT on diagnosis day either. That is ok though. I tell them that everyday anyway!
image image

It’s all about me!

Being positive is not being in denial. Posting highlights of your day on social media is not being fake. Trying to find hope in hopelessness is not wrong.

Attitude means everything.

And recently I have had to give myself a good shake.

Living with the daily challenges of two children who struggle can really get me down. Some days, more than I would like to publicly admit, I cry. I worry about the future. I struggle through everyday, often silently. And I feel alone.

But then I realised something important. I came to realise it was actually all about me!

I could look at things negative. Or I could try to see a positive.

imageFor example I could have wallowed in upset at the thought my daughter was so anxious she never made it to her first ever school trip. I could have become angry that she seemed to be excluding herself due to fear. But instead I chose to take her out for the day instead and shared a picture of her smiling face at a science centre rather than dwelling on her inability to join her peers at the zoo. School trip failing verses mummy and daughter quality time? Which would you have thought about more?

imageSame with sports day. I could shed many a tear over the fact my daughter was unable to join in many of the activities due to her difficulties. I could share pictures of an older girl having to take her hand and support her for even the simplest of races. Or I could take pride in the fact that on the tenth go at running around the cones my six-year-old finally had the confidence to say ‘can I try that myself?’. Those nine turns at needing support could have broken me but that final time doing it independently will make up for that every single time.
image
And then there was her class assembly. I was hurt and devastated when my daughter came home to say she was the only child in the class who did not have a speaking part. Her teacher had asked her and she had told them she felt she could not do it. Though I admired her honestly I have to admit I also felt so sad. For her, and for me. But can I tell you something? There was not a dry eye in the house on the day of her assembly when she took centre stage and held the entire show together with the most crucial part in the play despite not saying a single word! In the words of my six-year-old, ‘We can’t all have speaking parts. Someone has to do the acting!’ There is so much wisdom in that.

I could think about the sadness of taking her to yet another appointment.Or I could look at her smile as she played innocently in the waiting room and her sheer delight at being given insoles to help turn her feet. I think as adults we too often set our minds on that appointment rather than the child-like look at it all.
image
I could be angry at the fact I never get to sit in church with everyone else due to my children’s needs. Or I could take pride in the fact my children will sit outside the hall in their own little bubbles allowing me to at least be in the building. This is progress.

I could be embarrassed that I took my children to visit a friend and my son preferred to feel her garden bush than to be social. Or I could snap a picture of his happy face and be grateful my friend accepts us for who we are. And is happy for us to come back anytime.
image
I could shed tears at the fact my daughter recently went to a party and spent two hours sitting at the side next to me on her own. Or I could be delighted she was invited in the first place and see this as progress that she stayed in the room and enjoyed watching.
image
I could become frustrated at the fact everywhere we go my son is fixated with the elevators. Or I could ride with him, film him and discover on play back that he actually said the word ‘again’! Had we not been at that lift I would have missed that word! He hasn’t said it since but I have a video as proof and in time I may one day hear it once more!
image
And finally I could despair at the fact that for almost two years now my son has refused to wear anything other than his beloved school jumper. I mean literally every day I only get to see him in red. It started off funny but then in time I somehow gave up hope. Then, just today, he let me put a t-shirt on him and he kept it on happily all day long! And after all those tears, hopelessness and feelings of despair, I found a reason to smile again.
image
My children have some real struggles. I will never deny that. And everyday is a challenge. But sometimes it isn’t about them. It is about attitude: My attitude. Sometimes it is how I see things that makes a real difference to everyone else.

And now I realise that: it is all about me!

Why is it always about children?

100_0137

March is fast becoming my busiest month. Last year, quite by accident, I found myself making a video to mark autism awareness day on April 2nd. Within 24 hours I had been sent over 150 pictures of children from throughout the UK, mostly by people who I had never met in person, and within a few days I put them together in a video along with some music. It was all new, and hurried and compiled without a great deal of deeper meaning. And in my enthusiasm, innocence and haste I never really gave it too much thought. I was more worried about copyright laws and technical issues of teaching myself how to make a video and upload it to you tube than I was about thinking about any deeper questions. But a year later I look at that video and ask myself one question?

Why is it always about children? See for yourself…

We are approaching autism awareness day once again. And if anything it highlights to me again how much it always seems to be about children. You would think autism was a childhood condition. You would assume that at 16 or 18 autism ceases to affect someone. But that could not be further from the truth. My children (yes they are still very much children and so I am as guilty as the next autism parent of making it about children) will both grow up to be adults with autism. It is a life long condition. There is no cure.

There are reasons why it may seem we hear so much more about children with autism than we do adults. Here are some of my thoughts as to why that is:

1. Children touch the heart-strings more. Charities get more money when children are involved. The innocence and vulnerability of little children seems to open up even the coldest of hearts. So like any condition, if it affects children, everyone is keen to go down that angle. A crying child, a clearly disabled child or an ill child seems to be so powerful. And with autism being a hidden disability it can be so tempting to show children in this light just to bring our cause to the forefront and show that autism can be just as devastating to a family as many other conditions. I have done it myself. And so much publicity about autism does it too. Because it works.

2. The majority of people with autism are diagnosed in childhood. When you first find out your child has any condition your natural instinct is often to find out more and to find others in the same position. And so support groups are born. It is natural to want to promote your cause when it has suddenly became all-consuming to you. Newly diagnosed families often need time to talk, vent and ask questions. Professionals don’t have the time and the after care is seldom there. So when opportunity comes to promote awareness parents of newly diagnosed or young children are often the first to want to be involved. They are desperate for support, inclusion and a sense of being part of something that makes them feel like they are helping their child.

3. Young children are not so aware of what is happening. This is something I am acutely aware of. My son has classic autism with learning difficulties and severe delays. He currently can not speak. His awareness of the world around him is very limited and although that may increase in time he is unlikely to understand difficult concepts like public perception, peer pressure, vulnerability and susceptibility. He may never understand, for example, the implications of having a mother who blogs about it. His twin sister, however, may one day be much more aware. She may have embarrassment, anxiety or upset at the thought of her image being used to promote autism awareness at some point. And I would be wrong to ignore her feelings on the matter. So parents of older children and adults are faced with the issues of protection and permission that parents of small children are not.

4. The more children grow up in a society of inclusion the more they do not wish to be seen as different. As more and more children and young people with autism attend mainstream schools and colleges the more pressure there is on them to not stick out. For many older children and adults autism awareness brings with it the reality that they have not actually been able to overcome their difficulties and somehow their disability is still visible. For a few this will bring major anxiety. For some adults this would involve admitting to work colleagues, neighbours and friends that they have a condition they have yet to discuss. So they would much prefer anonymity. That has to be respected.

5. After years in the system weariness can set in. Can you imagine 20 plus years of lack of sleep? Can you imagine having to fight every day of your child’s life for twenty plus years just to get basic support? Some of these families have been through so many campaigns, so many fundraisers, so many promotions, that they can almost feel it has seemed pointless. They hear stories of families with younger children still fighting for things they fought for many years before and it can become so disheartening so they disengage. But we still need to be aware of them. And we still need to support them.

6. Not all awareness is positive. Parents of older children and adults have come to realise this more and be using wisdom more in how to make people more knowledgable of autism. There is something to be said for this maturity.

As we approach autism awareness day remember, like everything else, we all deal with autism differently. We are all on a journey and sometimes it can appear to just be about children. When you next see an image like this bear in mind that there is a reason why you are seeing a child. But this girl will still have autism when the toy rainbow has long been forgotten. And she will still have autism when awareness day has passed by too.IMG_2182

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?

imageimageimage

Still a child

20140410-223147.jpg
Dedicated to the wonderful children who are too often defined by diagnosis, difficulties and impairments.

He sits in a wheelchair with a bib around his neck. People talk about him like he isn’t really there. They feed him something without thinking wether he likes it or not. He has no say where they take him or how he is dressed. But just because he can not speak do not assume he can not understand. Give him a chance. Would you treat any other six year old like that? Treat him with respect and love. Let him try. Let him be included. He may be disabled, but he is still a child.

He screams in your face when you touched him. He bit himself when you closed the door. He is flapping his hands at the rain falling at the window and isn’t interested when you say his name. You don’t need to shout louder because he isn’t deaf. As frustrating as it is to watch, losing your temper at him won’t help. People talk about him like he is unaware. They had information about him but never took the time to read it or do anything about it. It was filed away and forgotten. People try and engage on their terms taking no account of his interests or sensory issues. Some even physically remove him or close the blinds.window Where is the respect? Where is the love? He may be disabled but he is still a child.

She lies on the floor trying to roll. People are pushing and pulling her this way and that. Talking over her noises and ignoring her pain. They think they are helping. They talk to each other without looking at her face, her eyes and listening to her cries. They have their agenda, exercises to increase her movement that no-one has involved her in. Their intentions are good. But have they motivated her and relaxed her? Would you expect any other five year old to exercise without motivation or encouragement? She may be disabled but she is still a child.

She stands at the side of the playground watching all the others play. The adults find this concerning so they devise strategies to include her and teach the children to not allow her to be on her own. She is badgered by voices shouting her name and pulling her hands. She is forced to join in, forced to interact when she didn’t want to. Why did no-one ask her what she wanted? Did she lose the right of choice and privacy when they diagnosed her with autism? They think they are helping but no-one thought to find out if she was happier watching and joining in if and when she wanted to. While other children can watch it seems she isn’t allowed. She may struggle socially but she is still a child.

He can’t speak so they buy him toys that they think he should like. No-one thinks to watch him and see what his interests are. He wants to look at a flyer from a frozen food shop but adults deem that wrong and would rather it was a book. When he licks the toys they take them out his mouth and take them away. They set up fancy sets with tiny cars and bricks that he can not hold and expect him to play like any other child. They get upset and annoyed when he brakes them and screams. They put dvd’s on he has no interest in because it is deemed more age appropriate. They think he can not speak so he can not communicate. But he can. He would rather the baby toys still but they are too embarrassed to buy them for a six year old. He may be developmentally delayed, but he is still a child.

He swears at your face when you say hello. He came out of school kicking and screaming and threatening to kill his teacher and classmates. The other children are scared of hi20140225-210850.jpgm and the school threatens the parents with the police. They label him as disobedient, a bully, having challenging behaviour. They yell at him more than they talk to him. He is retrained far more than he is ever hugged. He is isolated from his peers and banned from after school clubs. They try to fix complex problems with behaviour star charts and bribery. He may have difficulties, but he is still a child.

Despite physical, mental and and social difficulties these are all children. Children who deserve time, patience, understanding and love. They have a right to choose, to be educated and respected, to be listened to and included. They deserve to explore the world around them, learn in their own way and play with toys they enjoy. They deserve hugs and tickles and kisses.

Difficulties and diagnosis should never define anyone. Even if they can not feed them self, dress them self, attend to their own needs, speak or struggle with social interaction or behaviour they are still worthy of respect.

Because most of all, they are still a child.

Just imagine if that child was yours.

They can’t just “get over it”

image

image

 

 

 

 

 

 

 

 

 

 

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
.

Because a disabled child is a disabled family…

20140528-213036-77436593.jpg
Firstly, I want to stress that I am blessed. But secondly I also want to say that I still struggle.

I struggle with everyday things like taking my children out, buying food when we need it, cooking a meal, juggling hospital appointments with picking up children from school and nursery, dealing with the piles of paperwork and phone calls that have to be made whist functioning on just a few hours sleep, and trying to give both my children the time and attention they need.

My children are both disabled and therefore my entire family is disabled. That may seem a strange thing to say so let me explain what I mean.

This week my children have had some time off again for a holiday weekend. Like parents around the world I want to spend time with my children and enjoy them while they are young. The weather was not in our favour one afternoon so I thought I would do some basic baking with them. They are both 5. One is at school and the other nursery. How hard can it possibly be to make some chocolate crispy cakes?

Nothing is easy when you have a disabled child. My daughter was super excited about baking. My son could see it was something to do with food when the cereal packet came out the cupboard but that was all he understood. I explained the process to them using photographs (google is my friend) and we filled a mixing bowl with some cereal. And then everything went rather crazy after that! Because his sister had poured cereal into a mixing bowl and not a cereal bowl; because she wasn’t sitting at the table to eat breakfast like he expected from seeing the cereal out; because he had no idea what we were doing. So he lashed out. He screamed, bit himself, banged his head on the floor and threw everything about he could get his hands on. What should have been an enjoyable family activity was now becoming yet another casualty of my sons disability. Once again his disability was spilling into the entire family. My daughter could not continue baking, I could no longer give her attention or help and my son was seriously struggling. In the end Naomi made the quickest crispy cakes ever and Isaac sat and ate a bowl of cereal with some chocolate drops in. I made the mistake of trying to drop some melted chocolate in for him. Never again! The photo shows a smiling girl with a cake. But you just don’t know what else went on that day just to achieve that. One disabled child not coping and the entire family struggles.

20140528-224434-81874470.jpg
Then there was a 9am appointment for one of the children. That is quite common for us. Appointments in general are so common it is rare to have a day without one. But certain times make negotiating the logistics of family life a real challenge. How do you get one to an appointment and back to school 13 miles away and the other to nursery a mile in the opposite direction at the same time? Any family having to juggle hospital, clinic and therapy appointments with other siblings, work commitments and family life knows this dilemma. The disability of one child has a huge knock on effect on the others children and the parents. So often parents of disabled children are unable to continue working because the level of commitment needed to attend these things impacts on working life so much. A disabled child becomes a disabled family.

Then there’s the places you just can’t go to because your child is disabled. Yes more and more places are wheelchair accessible but that doesn’t make them autism accessible, or suitable to take an ill child or a child prone to seizures or public outbursts. Or even make them safe for a child with developmental delays or the ability to escape within seconds. As my children grow the list of places I can take them both to gets smaller. Holidays make that worse as everywhere is busy, noisy and unpredictable. Taking them to the local grocery store just to pick up basics takes military planning, praying the one (yes you read that right just one) disabled trolley is available, the music isn’t too loud, the layout has not been changed and the checkouts are not too long. I can’t just tell my children to follow me, or hold their hands or ask them to help. Picking up a pint of milk is as hard as an army assault course when 9 months pregnant! It is exhausting. One disabled child is all it takes for an entire family to be affected.

Emotionally disability affects everyone too. Parents worrying about test results, operations, high temperatures, infections, the next therapy sessions, the fight for the right services, the concerns about the future. Brothers and sisters torn between wanting time with their parents to support them whilst realising that far more attention has to be on their sibling. Children often becoming young carers long before they should have any real responsibility. Young ears hearing things that no child should have to hear simply because there was no child care to go to and so once again they had to ‘tag along’. Children seeing adults cry and not knowing how to cope with this weight. Brothers and sisters coping with their toys and valued possessions being destroyed by a sibling who never seems to get told off, or who doesn’t seem to care. Children afraid to tell their parents they are being bullied because they don’t want to add to the already heavy burden that their parents are coping with, or worried about asking for money for a school trip because they know money is tight, or even struggling with feelings of resentment towards all the attention the disabled sibling seems to get. That balance is often impossible for parents of disabled children to get right. Whilst one child might be registered disabled, emotionally everyone in the family is disabled too.

One child wakes up screaming and often the whole family gets little sleep. One child is sick at the dinner table or throws the meal across the room and no-one gets to enjoy a meal. One child refuses to go to school or wear the uniform, every child is late as a result. It is a ripple effect.

We need to support disabled children. We need to continue to spread awareness of disability in all it’s forms and continue to invest in services, therapies and medical equipment. But we also need to remember the parents and the brothers and sisters too who live disability on a daily basis. They might look fine but remember…a disabled child is in fact a disabled family. And they ALL need our prayers and support. Thank you!

Is it time to return to routine yet?

20140417-222638.jpg

‘Mummy, it’s 3 past 6 o’clock.’

They don’t do lie in’s, my children. They don’t do early nights either for that matter. And my 5 year old number fixated daughter has just discovered a little alarm clock. In true autism style it has become the latest thing to be carried everywhere. And thus we must be informed of the time at every opportunity. Except she can’t tell the time yet so the results are funny, cute but incredibly annoying all at once. Does the speaking clock require a stand in for a day or two?

‘Mummy, it’s 4 and 6 o’clock. That’s breakfast time you know.’

Sigh. I guess I should be happy she wants food when she is such a fussy eater. Chocolate spread sandwich it is again. Oh to try cereal just once.

‘Mummy, the clock moved again! Look it’s 8 o’clock and 6 now.’

‘I’m sure that must mean it is wash and dressing time honey.’
‘Don’t be silly mummy that is 11 past 1 o’clock. It is numberjacks DVD time of course.’

Strange that. Always seems to be numberjack time. Maybe I should change the battery in that clock sometime.

‘Mummy come quick, did you see the clock move again. Look it’s on the 5 now. That’s my favourite number. That’s my number. I think it will go to the 6 next. Yes, I think that. Did you know 6 comes after 5 mummy?. Look it’s 5 o’clock and 6 now isn’t it….’

Oh yes, that means shower time for mummy. Quick check that twin brother is settled on google earth travelling into oncoming traffic on the motorway and mummy is out the room.

And breathe. Surely one has to be safe in the bathroom….

Was that a little voice I heard over the noise of the running water?

‘Mummy, I just had to come show you this. Guess what? It passed the 6 and I missed it. Fix it mummy. It can’t move to the 7 if I missed the 6 can it? Fix it mummy, please. Oh mummy, Isaac is screaming down stairs too. He wants mashed potato again for breakfast but he can’t have that because that was at 6 and I missed the 6 mummy. Fix it now mummy!’

Now I know I have eyes in the back of my head. I know I can cook up a meal for four on just half used bags of all sorts from the back of the freezer, I know I can wipe noses, fix iPads, change T.v channels and catch an escaping child all at once…but turn back time because she missed the six while still dripping wet and naked in the shower? A quick turn of the clock and all is well. Now surely that means 5 minutes to get dressed and ready? You kidding! Remember her brother is screaming for mashed potato down stairs…

So towel tied around me, hair dripping, and glasses still on the bathroom windowsill, this is what I face in my return downstairs.

20140417-222755.jpg
Now if only that turning of the clock could mean a rewind of everything for 5 mins! A quick turn on of a lift door opening on you tube and a run upstairs to get ready. Passing the ‘talking clock’ on the way of course…

‘Mummy, it’s passed the 6 now. That means almost 7 o’clock you know…’

I used to take my time dressing, choosing clothes, drying my hair, even stopping to check myself in the mirror. Now I break world records getting ready only checking the mirror to make sure I didn’t accidentally put talc in my hair instead of shampoo.

While dad has returned from hanging out washing in the garden (I am sure this is just an excuse to escape) and little miss talking clock is happy resuming her watching of numberjacks, I check the fridge to make sure nothing got eaten by Isaac in his search for mashed potato, and make him a drink and snack while I am at it. It really will only be a matter of time before he once again screams for that illusive mashed potato. So I offer mr lift door watcher a biscuit. Aghhh, how could mrs asd super-mummy not have known that all said biscuits were indeed broken. Cue meltdown once again.

Time for escape plan A. Trip to the shop. Who cares what time that little clock says this mummy needs a cup of something full of caffeine and we are either buying the shop out of mashed potato or biscuits…but we are NOT buying anything, I repeat anything, number related! At least the boy won’t bleed my ears in the car other than with screaming.

And then he did it. Maybe he wanted out from the constant number and time talking. Maybe he realised this mummy was on a mission. Maybe he actually understood he was getting biscuits. Either way he was just utterly amazing. Walking right through his beloved automatic doors, right to the biscuit aisle, picked up some biscuits and then went to the checkout to pay. Actually if only I could pause time right now. Because this was something incredible. My non verbal, global delayed, classically autistic son just held my hand and walked into a supermarket with me to buy biscuits. He even put them in a bag and walked back to the car with me. And carried them into the house.

20140417-222927.jpg
‘Mummy you missed the 9. It went past the 9 and you missed it. I think we should have biscuits at 12. Yes, that can be biscuits time. 12 is after 11 but we are not at 11 yet. Because they are really big numbers. You have to wait a long tome for the big numbers….’

Too late, the boy had eaten three biscuits by then anyway.

‘Mummy, daddy dressed me. But he did it wrong again. He did it at 10. But I wanted dressed at 3 o’clock. I told you that. And he didn’t pause the DVD. So I missed the good bit. You know the bit with 3 launching out the sofa. Where’s my number 3 mummy…’

So in between the clock watching, the never ending time talking, the screaming for mashed potato, the full volume videos of lift doors opening and closing, trips to soft play and parks, we have also somehow managed to squeeze in two visits from the children’s different speech therapists, a visit from the health visitor, a visit to the eye clinic and a meeting at the daughter’s nursery. How did we find the time…

Actually just talk to Naomi about that one. She’ll tell you what number on the clock they all came at, left at and everything else in between.

I love my children. I love being a mummy. But is it time to return to routine yet?

Autism awareness video

This is for those of you who have not seen this.
I was approached by a social media group of parents to do something to mark autism awareness day on 2nd April.
This is the outcome:

Thank you once again to all the families who helped me make this by supplying photos of their beautiful children.
You are all wonderful x
Can you spot my own two beauties?

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.

20140314-104149.jpg
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.

20140314-112225.jpg