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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Do I just accept this?

image Do I just accept this?

Do I change my children or do I change the world?

As my daughter sat beside me in bed and read from her reading book I wanted to freeze frame the moment. This is awesome. That any child learns to decipher scribbles on a page and decode them to understand words and meanings is amazing. This is the wonder of learning to read. It made me want to cry. Partly with pride in my daughter but partly with sadness for her twin.

Will her brother ever understand sentences and grammar and spellings? Will he ever be able to speak or read a book to me? Does that really matter?

And once again I am faced with the autism dilemma that I try to bury every single day:
Do I force my children to conform to social norms and mainstream curriculum, do I carry out therapy after therapy with them, alter their diets and ‘treat’ their autism, or do I accept their differences and embrace all that they are and instead spend my time educating and encouraging society in awareness and love for all people?

In other words, do I just accept this? Do I try to change my children or try to change the world?
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The longer I am in the autism community the more I am pressurised to join a different ‘camp’. People want to know if I am in the ‘acceptance’ camp, the ‘genetics’ camp, the ‘vaccine blaming’ camp, or the ‘healing camp’. And it is so complex an issue I just can’t decide.

The problem for me is I have two very different children both of whom have a diagnosis of autism spectrum disorder (or should that be condition?). One is non verbal, one very verbal. One has severe learning difficulties and global developmental delay, the other is academically able and only displays delay in gross motor skills. One attends a school for children with severe leaning needs (a special needs school), whilst his twin sister goes to the local mainstream. I have the honour and privilege (some would argue stress and difficulties) of seeing so much of the spectrum. I hear talk about which end is the most ‘difficult’ or the most ‘challenging’ and I truly can’t answer that.

On the days my son is biting me, screaming for hours in distress and I have no idea what the cause is, or I can not pull him away from the lifts in the shop in order to buy a simple item, I would agree with those who argue the more ‘severe’ end is harder. Then on the days when my daughter takes panic attacks and can barely breathe, when she talks about how sad and confused she is, when I look at her and see a child so vulnerable and socially struggling, I can identify with those who feel the more able end of the spectrum have it harder. I love that my children won’t bow to peer pressure and see the world in a very unique way. I love that something so simple as a lift door closing brings my son to the height of ecstasy. I love that my daughter can focus so intently on her obsession and memorize huge chunks of script. I can see benefits to their basic understanding of the world, how things are black and white to them and their love of order. Of course I love them for who they are, irrespective of autism. I don’t ‘hate’ any part of them even in my toughest moments.

But on the other hand I fight strongly for speech and language, and occupation therapy, and support in school. I would do anything to hear my son’s voice. I push for respite even though I love them. So I feel so torn between the different camps.

While I didn’t see much change in my children after their vaccines I know families for whom the change was both real and devastating. If I truly thought vaccines had an effect on my child would I want the world to know and prevent their child or family going through what I had to? Of course I would. So while that anti-vaccine camp may not apply to me I do understand people’s passion.

While I really want to know and understand if there is any genetic reason for my children’s autism I feel very uncomfortable with the thought that if a full genetic explanation can be found this could lead to couples choosing to not give birth to babies believed to be on the spectrum. And it does seem like every other day there is another article giving some bizarre reason why there is an increase in ASD. There is enough guilt on families already and for a huge proportion of families this can lead to parents taking antidepressants. And with massive funding in research there seems to be ever decreasing funding for support.

As a believer in God I have also been asked about my views on whether I believe God could heal my children. I firmly believe he could. Do I believe they need healed? That is another question altogether. So I pray for strength, wisdom, and knowledge to know what paths and camps to seek advice from and when. I pray for healing. I pray for their teachers and therapists and I also pray that as a society we become more tolerant and understanding.

As with everything in life there is rarely a simple answer.

Do I just accept this?

Well I clearly want the best for my children so I will continue to pursue any avenue I feel is right for them to help and support them.

Do I change my children or change the world?

Right now I think it is a bit of both. In fact I would even say my children are possible changing the world in so many wonderful ways.

They are starting by changing me.
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Still a child

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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.

25 confessions of a special needs mum

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I had great plans for being a parent. My children would play board games with me at night, have friends around for tea, talk to me enthusiastically about their school day, and always say please and thank you.

Then I had children.

So there is more technology than board games, no friends around and no chit-chat about the school day but I still thought we would read stories before bed, go shopping for clothes, kick a ball around in the garden and bake cakes.

Then I had children with special needs.

Parenting is now intense, includes working with a large team of health and educational professionals, involves lots of trips to hospitals, means sending my child miles in a taxi to school and consists of huge amounts of paperwork. But it is still a huge amount of joy and love.

It is a different style of parenting. I have thought and done many things I never dreamed I would. Some are weird, some wonderful, and others just brutally honest. Here are my top 25 confessions as a mum to two beautiful, funny and highly individual children with extra needs:

1. I have carried out speech therapy in a public toilet!
My son has a current obsession with hand dryers and I am trying to encourage him to say ‘on’. Where better to find a whole bunch of hand dryers than in public toilets? Yes, I seriously asked strangers to wait to dry their hands in the hope he would vocalise. Yes, I am THAT desperate to have my son talk!

2. I rewarded my son’s defiance!
So he finally at almost six worked out how to shake his head to mean ‘no’. You’ve got to reward and encourage communication even if it does seem crazy saying ‘well done’ when he has just appeared to go against what I asked of him.

3. I have been known to record the bedtime hour of cbeebies so we can watch again at 3am when they wake up in the vain hope the kids will still realise it is bedtime!

4. I made my son dinner for breakfast!
When his current food obsession is mashed potato and gravy you just know it isn’t going to go well with corn flakes on the side! So mash, carrots, peas and meat for breakfast it is then. No rush when mornings start at 5am anyway.

5. I have spent hours in shopping centres with my children and not boosted the economy in any way. Lift doors, escalators and hand dryers in the toilets are far more interesting anyway.

6. I have nodded and agreed at meetings with professions even when I have no intention of doing what they suggest just to get them to leave my home or have a meeting finish. It is just easier sometimes.

7. I have sat in my son’s room staring at his bubble tube even when he has been at school. If it calms him down it may just work for mum too.

8. I have resorted to bribery just to get everyday tasks done. First dressed, then ipad. First nappy change then chocolate. Sometimes there is just no other way.

9. I have taken myself to the naughty step just to get some time out.

10. I have cried publicly in a supermarket because they had no microwave mashed potato left.

11. I have emptied the inside bag of breakfast cereal into an old box of cereal because the packaging has been changed by the manufacturer and the kids won’t eat it any more.

12. I have seriously considered installing a lift or a hand dryer in my own home and actually googled the costs involved.

13. I have stayed up all night researching my child’s conditions in the hope that someone, somewhere is working on a cure.

14. I have taken photographs of lines of toys and elaborate train track set ups so they can be restored to the satisfaction of my daughter in the event of them accidentally being touched.

15. I have felt tempted to tell people my child has a contagious illness so they leave her alone and don’t speak to her. It may avoid the tears and tantrums when she gets home because her personal space was intruded upon and she could not cope with the sensory overload of people asking her questions.

16. I have seriously considered saying my children are much younger than they are to avoid having to mention why they can’t jump, climb, talk and still want carried.

17. I have kissed a waiter in a restaurant because he was willing to get five different options for drinks for my son so he could put his hand on the one he wanted. Some people are just angels in disguise.

18. I have washed and dried my daughters comfort blanket only to sit on it, walk on top of it and stick it inside my jumper for a while so she doesn’t notice it smells different or hasn’t got that dirty worn look about it.

19. I have rushed from one hospital to another because I was frightened to change appointments that clashed as I knew we would have to wait months again for fresh appointments.

20. I have worn my hair down and put on long-sleeved clothing to hide the fact my son attacked me when he was angry and my arms have bite marks and scratches from a five-year old. Why is it ok to admit a partner is abusing you but still taboo to say your child injured you?

21. I have wrapped a packet of nappies up in brown paper to take into my daughters school so it looked like a parcel to shield her embarrassment at being incontinent in a mainstream school.

22. I have told my daughter it is ok not to share. This girl would give away everything to others at her own expense but freaks out if something special of hers is touched. Sometimes others have to recognise when something is very special and learn that not everything has to be shared.

23. I have ignored my phone ringing. Some days it just gets all too much.

24. I worry about the future.

25. I have amazing children. I have a husband who loves me. I am very blessed. But I want to confess that often I still feel sad. And very alone.

So there you have it. They say confession is good for the soul. I hope that is true.
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