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!

So when did you become a carer?

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I bumped into someone the other day who I hadn’t seen for over a year. We exchanged pleasantries and briefly caught up. It’s hardly high up on the social etiquette rules to say ‘oh yes my kids are almost 6 but both disabled’, so I dodged the issue talking about the fact they are now at school (I didn’t even say where as that would take some explaining as to why one travels so far while the other attends the local primary), we are all well and how lovely it was to see her again after so long.

And then the inevitable question:

‘So what are you doing these days?’
‘Oh, I’m a carer.’

‘So when did you become a carer?’

What a good question!

When did I suddenly go from being ‘just’ a parent to my children to becoming their carers too?

moses basketWas it the day my children were born shortly after I first gave up full time work to start my maternity leave?
I was ‘just’ a parent then. New and excited and enjoying the beauty of holding two new lives.

Was it when they were around 9 months old and I made the choice to not return to work after my maternity leave?
I was ‘just’ another stay at home mum then.

Was it the day I first realised something was ‘wrong’ when I called my health visitor and they were only 18 months?
I was ‘just’ a worried mother then.

Was it when they were 21 months and the paediatrician first mentioned autism?
I was just an anxious, confused and upset mum then, frantically googling ‘autism’ hoping and praying there was some mistake. But I still didn’t see myself as a carer.

Was it when my children had their third birthday and still one of them wasn’t walking?
I may have been edging more towards a carer but everyone, including myself, still viewed me as a parent.

naomieegWas it when my children, first one and then the other seven months later, began receiving disability benefits?
Possibly. I guess signing as their ‘representatives’ should have made me realise. Over time I was doing more and more of a caring role but don’t all parents ‘care’ for their children? I was only doing what all parents should.

Was it when my children started having more hospital appointments than birthday party invites?
All kids need to see the doctor at some time, right? I was ‘just’ a busier than normal mum.

In truth I don’t know when it actually happened. I never had a starting date, I certainly have no finish date and it wasn’t something I ever planned on becoming. But the reality is both my children need twenty four hour care, well above what other children their age require. I am more than a parent:

I am a fellow professional at every meeting, knowing more about their needs than any of the others combined.
I am their voice when they have no voice. I will fight for them way beyond what anyone else ever will.
I am their advocate. I will take their side against all odds and push for what is in their best interest.
I am their driver, lifting them out and in transport, pushing them in wheelchairs, changing their nappies, and ensuring their health needs are met.
I am their nurse making sure daily medications are taken on time and reordered as needed.
I am their speech therapist, occupational therapist, mentor, and encourager. I spend more time doing exercises from therapists than I do doing homework from school with them.
I am their researcher ensuring new guidelines on their conditions are adhered to and they receive the care they should.
I am their educator when school has finished but they still struggle with the concepts and learning that others grasped easily.
I am their administrators filling in forms on their behalf and keeping their records up-to-date.

Over time my job evolved. I have a full-time job that brings me huge rewards but very little pay. I have gained patience, empathy, a sense of humour and the ability to function on very little sleep. I have become well versed on my ‘clients’ needs and wants. I am highly educated on how their disabilities and conditions affect them personally.

To many I am still just seen as a parent, a stay at home mum, or even an unemployed person.

But I am proud to be a carer.

When did I become a carer? When I realised my children needed more of me than I thought I would need to give. When I realised their care needs were overtaking my life as well as theirs. When there was no longer time to think about a job let alone apply for one or have one. When the meetings and appointments and paperwork became my life.

And I was finally ok about that.