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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As long as they wear it!

The weather is getting colder and the kids keep growing, so I took myself to the shops today to buy them some new winter clothes.

Like everything else though it was much harder than I thought it would be.

So it seems everyone is into the film Frozen and this is reflected in all the clothing stores. My almost six year olds have never watched a film in their life and when my daughter saw a clip from Frozen in her nursery last year it gave her nightmares for weeks. Numerous other characters appeared on t-shirts, jumpers, and pyjamas for the girls yet I had no idea who they were. We watch very little TV. My daughter’s current obsession is Octonauts and like her previous obsession of Thomas Tank engine it seems that girls are not supposed to like such things, and certainly there is no demand for pink items with such characters on. She will, once again, be most disappointed. Neither is she a huge fan of all things ‘girlie’ like tutu’s, bows or frilly socks. She would far rather wear a jumper and leggings to play on the floor with trains or her little characters from Octonauts.

She also has sensory issues. She likes soft, cosy and lose fitting items. She hates tight fitting or hard fabrics like jeans and much prefers her arms to be covered. She only likes soft tights and only when the seam is ‘just right’. Socks must be neither too tight or too loose and this poses a real problem just now as her feet are at that transition size when she is right at the bottom end of the sock size and thus socks are all baggy and loose until her feet grow even more. But the smaller size socks are right at the top end of her shoe size and thus too stretched for her to feel comfortable. She is petite and very slim so that also makes it difficult as elasticated items often just fall right off her.

If I thought she was hard her twin brother is even worse! For 440 days now (yes THAT many!) he has only ever wore his school jumper EVERY day, including his birthday, Christmas Day and every weekend. I have tried every style of red jumper imaginable but nothing will encourage him to even try anything else. His school uniform includes jogging trousers (far easier in an incontinent child) but he used to happily wear any trousers that I put on him. But in the last few months he has refused to wear jeans or chinos or corduroys and now insists on jogging trousers everyday too. There isn’t much selection of colours in jogging trousers and even if there was there are only a limited amount of colours that match the traffic light red of his school jumper. At least a jumper is appropriate winter clothing!

He refuses to wear a hat and gloves. He sees no need to as he rarely feels the cold. It is a massive battle to even get him to wear a coat. But he will at least wear wellington boots, preferably if they are red! He would happily be bare foot, even outside!

Clothes for Isaac have always been an issue. He never walked until three and buying trousers for a toddler who could not walk was difficult as they all had pockets and thin knee areas that are useless to a crawler. As he has aged less and less trousers have the elasticated waist required for a child in nappies and it is all button flies and clips suitable for children developmentally the same age as their clothing size. And then there is the age appropriate issue of bibs and motifs. While my almost six year old would still be delighted to see socks with Igglepiggle on or Peppa Pig, it is assumed that those wearing bigger socks would rather see superheroes, Lego and characters from computer games. Isaac has no idea what any of these are. His feet may be the size of a six year old but his brain is still that of a young toddler.

He will be requiring Velcro fastening shoes long after his peers have learnt to tie. I pray Velcro shoes stay in fashion for years to come.

It doesn’t matter to my children where I shop. I will be cutting the labels out of the clothing anyway! They are not brand away or swayed in any way by peer pressure. They have no concept of cost.

At the height of Halloween I didn’t need to enter into the frenzy at the costume areas either. Neither of them will entertain dressing up at any time. They are happy with who they are and imaginary play is not a skill high on their priority list.

In the end I settled for another few pairs of the same joggers I always buy for Isaac. And Naomi got a new fleece jumper and some warm soft leggings. And both of them got some new pyjamas. Not that they are bothered really.

Clothes are just functional to them. And since Isaac stripped off in the middle of a restaurant last weekend it hardly matters what I buy him…the important things is he wears something!

I choose my battles carefully. And I buy what they like not me. After all it is them wearing it not me.

Are they warm, comfortable, happy and wearing something? Well that is all I ask.

Winter, we are ready for you :)

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Because it never ends

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I woke up this morning. Once again it was far too early. One again the alarm clock never got a chance to ring as screaming became my wake up call. My mornings, like so much of my life, are very predictable.

In a few weeks it will mark six years of it being like this. I thought children were supposed to sleep through the night at some stage?

I guess that is one of the things about my children having special needs. The early waking never ends.

So to stop the screaming I dress him. In the exact same things he wore the day before. So it may be a school day but it really doesn’t matter because he wears the same jumper whatever day of the week it is. Sometimes I can shrug that off, laugh at it, even smile at the predictability of it, but other times it gets to me deep inside. We’ve been doing the jumper thing since August 2013. It is one of the hundreds of things we are ‘working on’ just now but getting nowhere. It just seems relentless. And sometimes pointless.

On a positive he has still been saying his first word ‘on’ that we spent an entire week learning last week at half term. It still isn’t fully pronounced but he is trying. And with massive prompts he is using it for the DVD player, the iPad, and his jumper. But like everything, it is all consuming, all encompassing; exhausting. I can’t let it go because if I just do things without having him try and talk I will be training him that there is no need to speak; no reason to communicate. So now we have started it has to continue. And if we manage to, by some miracle, add in a new word, it will be the same again. We HAVE to take every opportunity we can to help him. It’s just sometimes I would like a break from it all.

We’ve had some problems with the national oral health programme. Not surprising when the simple task of daily teeth brushing is a battle for both children. So now both children have to attend a specialist dentist every six weeks for ‘familiarisation and treatment’. For one of them that means dragging him away from the lift in the waiting room every six weeks. And sometimes that is just another battle that never ends.

It just adds to the myriad of appointments we have anyway; Eye clinics, paediatricians, clinics, home visits, school meetings, training courses, genetics, opticians, and regular GP visits. And unless we want them to have hair like Samson then we have six weekly hairdressers visits too. For most of these we are still struggling to get past the lifts and the automatic doors. Sometimes I could punch the person who invented such things.

I know, I know, this is my life, and I need to get on with it. Lots of folk have it worse. I know that. And I am not depressed. In actual fact I had fun tickling my son and watching lifts with him on his iPad at 4:30am.

It’s just that knowing that this is for life: Autism, genetic conditions, learning difficulties, neurofibromatosis type 1, developmental delay. They are relentless. They put stress on families and make everything seem massive. They add strain to marriages and test the patience of saints. They require more energy than the national grid can provide. They can’t be cured. I can’t walk away.

Forgive me for blogging in a negative way. Please understand I am not feeling sorry for myself. I am exhausted. I am surrounded by battles many of which I may never win.

I now understand why so many marriages struggle when there are children with special needs involved. I know understand why so many parents of children like mine are on anti-depressants. I now understand why so many are begging for respite.

The reason is this: because it never ends.

Come on son, I know you can do it!

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When you have a child who is seriously struggling you would expect therapists, teachers and support staff to do everything they can to help. You put your faith and trust in them. They have years of training and experience behind them and have skills that a humble mother couldn’t possibly have. You send your child to school believing they will push him, encourage him and motivate him to bring out the best in him. You are in fact handing over your most precious possession to them in the belief that they have the necessary skills to help them. They have expensive technology, highly trained staff, a vast array of agencies at their beck and call to support them and the facility to give my child undivided attention.

If only life was that ideal. The reality is that budget cuts, lack of interest and time restraints often mean that some children fall by the wayside.

So when my son’s school notified everyone that the speech and language therapists were no longer going to give my child one to one intensive therapy and direct support, when his individual education programme showed no signs of pushing him to learn to speak and was heavily leaning towards getting him to point and use some pictures, when even his legal support document was threatened with being closed I decided I had no choice but to show them what I believed my child could do.

It seemed impossible.

While the staff and professionals working with Isaac all have the luxury of a full nights sleep, I am functioning on a few hours a night and some night less. While they are entitled to regular breaks, have the support of other staff and get paid a salary, I am balancing life with two children with autism, have very little training and get paid nothing more for working intensely with my child. They can go home at the end of a frustrating and emotional therapy and forget about it. I have to wipe my own tears, internalise my own fears and deal with the heartbreak of knowing this is not just any child I am working with, this is my beloved son.

It may not matter to them if they never hear my child’s voice. But it mattered to me.

Just weeks before his sixth birthday, not having spoken any recognisable word for over a year and a diagnoses of classic autism, Neurofibromatosis and global delay, the odds were not on my side.

But I had to try. It helped that he took a sudden interest in hand dryers and hair dryers but could not work them. So during half term week I decided to do some intensive interaction with him to try and get one word. I found him one day on my bed pointing to the hairdryer. Now was my chance. I modelled the word lots and let him see my mouth. I said the word and then turned on the dryer. His excitement showed I had a motivator. So every time he went on that bed I got into the room with him and worked with him to say a simple word. One syllable, just two little letters, not much to ask. But a massive mountain for my boy to climb.

Here is what day 5 was like: he was trying so hard:

But I wanted to show he could actually speak. I want to prove to everyone involved it is worth continuing to teach him to speak. I want them to see he is worth believing in.

And here is day 7:

It may not be too clear but he certainly vocalised a sound not unlike ‘on’. It may only be for the hairdryer, but it’s a start.

I am exhausted, physically. mentally and emotionally. Some days this week I could have easily given up. But love carried me through. And it was so worth it.

Don’t stop believing. Every child has potential. Despite funding issues, staffing constraints and time pressures I refuse to let anyone stop believing in my son.

He has so much potential. And I intend to prove that. I just need Isaac to do this with me.

Come on son, I know you can do it!

Am I crazy buying my 6 year old a smart phone for his birthday?

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It seems the shop assistant thinks so. When I payed for the item and told him it was for a six year old’s birthday he gave me that ‘look’. You know that look that shows he thinks you are clearly deluded and should he be calling the doctor on you? I know that look too well.

So I am sitting here asking myself what is wrong with a smart phone for my six year old?

I KNOW he will love it.

He will be able to work it way better than some adults I know.

He will be able to teach others to work it.

It will amuse him for hours and I already know it will be the highlight of his birthday.

It has an incredible ability to help him learn.

It is portable so can be used in the car to keep him occupied on long journeys.

Provided we limit the amount of time he is on it everyday it should not cost us too much money.

He will be the envy of his school friends.

But most of all it will probably give me some quiet time where he will sit alone and play.

I will be judged. I know that. I am used to that. And the same people will also judge the fact he is also getting a CD player too. He broke his other one dropping it down the stairs so like all good parents we are just replacing it and saying nothing. No sitting on the naughty step. No time out. We just replace it because he liked it. He was so upset about it after all and no-one likes to see their child upset. I never even had him ask for a new one. He just knows he will get a new one soon.

So you probably think he is spoiled. And that I have more money than sense. Some people may even be calling me unkind things by now.

So what if I told you he dropped his CD player when he was at the top of the stairs because he had a seizure? What if I told you he hasn’t asked for a new one because he can’t speak?

Here is the CD player in question:

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It is designed to be played with by young toddlers. My almost six year old is so behind developmentally due to neurofibromatosis type 1, autism and global developmental delay that he is only just starting to play with toys like this.

And here is the smart phone the shop assistant was so shocked I was buying for a child his age:

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A baby toy!

It lights up, it plays music and it gives instant feedback. Just his sort of toy really.

It’s easy to judge when you don’t have all the facts.

Am I crazy buying my six year old a smart phone for his birthday? When you think he can’t speak, is still in nappies, can’t dress himself and still eats with his fingers…baby toys and toddler toys are exactly what he needs.

In fact here he is on his first birthday having no idea how to play with a toy he received:

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20140217-224411.jpg5 years later he would just love this toy again. I wonder if there are any keyboards with dancing drumming bears on sale…

The crazy thing was I threw out all his baby toys and now I am buying them again five years later. At least now he might play with them.

Have you any idea how excited I would be if my six year old actually asked for and was able to use a REAL smart phone?

Call me crazy but if that happened I would be right back at that store buying him one tomorrow!