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.

The only things that are fair are my time and my love

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‘Why doesn’t my brother get homework mummy?’
‘But I don’t get to go to soft play in my school!’

And so the realisation begins at the tender age of 5 that life isn’t fair.

It is hard for any child to understand why a brother or sister appears to be treated differently or seems to get preferential treatment. Sometimes that can be explained away when there are large age gaps between siblings, or different parentage or illness. But when the inequalities of life are so obvious even within a set of twins it makes understanding the concept of fairness even harder.

I have been thinking of how to answer my daughter’s questions long before she has had the understanding to voice them. I remember begging a nursery head teacher almost three years ago at this time to make every effort to ensure both my children were photographed together in the nursery even though they were in different classrooms. Plans were already being made to move one of the twins out of mainstream nursery and into specialist provision and somehow I already knew this was the start of their long term separation. Despite huge difficulties even getting Isaac into the room that lady moved heaven and earth for my dream to come true. I remember saying then I had this uneasy feeling it would be the last time my twins would ever attend the same educational setting and be able to be photographed together. Although, due to a house move, 12 months later they did manage to once again attend the same nursery temporarily they missed the annual photographers visit and so this photo means so much to me.

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It was the end of life being fair for my babies.

Because of his complex needs Isaac moved on from his additional support needs nursery placement to a school for children with complex needs. Whilst his twin sister remained at nursery for an extra year.

It didn’t seem fair that one four year old had to travel alone in a taxi with strangers while the other got to go in a bus with other children. It didn’t seem fair that one four year old had to be out of the house for 7 and a half hours 5 days a week while the other only had nursery for a few hours a day. It wasn’t fair that one child got so much time with mum and dad while the other came home so tired he fell asleep before his dinner was even made. On the other hand while one 4 year old with autism was getting intense 1-1 support, horse riding, the use of a school hydrotherapy pool every week, weekly trips to the school soft play and sensory room and use of interactive TV and an iPad the other was mostly playing trains, going to the park or playing with her dolls house. Both children born to the same parents on the same day and both diagnosed with autism yet both experiencing life so differently. They were just too young to notice or care.

But now since starting mainstream school herself we are starting to get more questions from our daughter. She has a ‘thing’ for rules and equality and fairness. So why does her brother not get homework while she does? Why does he get to do so many ‘fun’ activities at his school while she has to do so many ‘jobs’ at hers? Why? Why? Why?

I could go into a long explanation about how he requires so much more in order to be able to support his learning. I could explain how the spectrum of autism is so wide and how that means some children need all sorts of intense experiences to help them to communicate and understand the world and how she is able to understand things without needing all these things. I could explain how we never chose for life to be like this and we would like nothing more than for them both to be at her school and doing the same work. I could talk to her about how her brother is non verbal while she is very verbal so he needs much more support and help to be understood. I could explain his Neurofibromatosis to her, or talk about his global developmental delay, or how he is still wearing nappies, or even say how he isn’t ready to learn and do all the things she is doing in school.

But I just couldn’t manage to explain all that in a way that would hold a five year olds attention or in a way that would make her feel just as special and loved as her brother.

So for now I took the easy option. I just said that life isn’t fair and sometimes it can seem like some people get all the good things and others get lots of hard things. But God sees it all and loves us all equally. And mummy and daddy think both her and her brother are equally special even though they are so different. She seemed to accept that.

But then I said, ‘you know what Naomi, mummy will try and make her time fair. So let’s us go spend some time just you and me doing your wonderful reading and letters and numbers together. Then you can get some peace playing trains while I spend some time with your brother. Does that sound fair?’

I can’t make it right for either of them. And the harsh reality is that one will always need more resources, input and support than the other twin. As they get older the differences will only increase. In time I will be able to explain and talk to my daughter more.

And tonight will not be the only night when they only things that will be fair will be my time and my love.

When reality hits

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I worry for the future. What parent doesn’t?

I booked my kids first ever proper birthday party today. A small affair in terms of what the play centre are used to but a massive leap for us. I used to worry that my children would never have a birthday party, or even understand what birthdays are. Now I am worried none of the children we invite will come. Will my twins notice? One of them might but the other still has no idea what parties or presents or cards are all about.

That worries me. He will be 6 in a few weeks time.

It worries me that he is still in nappies. It worries me that he still has no speech. It worries me that he still can not dress himself, comb his hair, respond to his name, read, write, jump, paint, wash himself, ride a scooter or a bike, understand instructions or use cutlery…all skills other children his age take for granted.

The lady booking the party asked me what 4 things the children would like to eat at their party. She gave us a choice. I asked one of my children and as I looked at the other one a silent tear ran down my cheek. It was unexpected. It was out of character. I try not to cry in public. But at that very moment reality hit me: my son is almost 6 and I can’t even so much as ask him what he would like to eat! He never even came when I called him.

I shouldn’t be with them in a soft play centre; not today. Today is Sunday and on Sunday we go to church. What on earth was I doing on my own with 5 year old twins, nappy bag still in hand, in a soft play centre on a Sunday morning? This wasn’t how it was supposed to be. They should be in Sunday school hearing stories from the Bible, making crafts for me to treasure for years to come and singing choruses. I should be listening to inspirational teaching, having fellowship with friends and worshipping God.

The reality is I just could not face it today. In soft play (at least as quiet as it is on a sunny Sunday morning not long after it opens) we are ‘normal’. The changing rooms are through the same door as the toilets so no-one has to know I am still going to the ‘baby room’ with children more than half my height. As my son buries himself in the ball pool no-one sees that he is licking them all and flicking them in the air to see the shadows they make as they fall back down. The noise of other children playing and the music drown out his squeaks and squeals and the noise of him flapping his arms against his chest. Lots of kids take off their socks even when they are not supposed to so he sort of gets away with that too.

But once we leave reality hits once again. I have to lift them both into their car seats. I have to strap them both in. I have to type the pass code into his iPad because he still has no concept of numbers or what to do. The entire way home (thankfully less than ten minutes) I hear just one word, and it isn’t from the lips of either of the children! Isaac has found an application with numbers that if you press them the name of the number is said…again…and again…and again. It could be animal names, names of people, letters, anything really. He just likes the sound. 2,2,2,2,2,2,2,2,2,2,2,2,2,2,2,2,2…….this is today’s ‘sound’. It may be tomorrow’s too. And for the rest of the week. Perhaps even the week after too. He has no concept of what it means, he isn’t going to repeat the sound or even start to write the number…it is just a noise repeated over and over and over…until you feel sick and want to throw that awful thing in the bin.

The reality is it is THE only thing that he will do for any length of time. And I mean even a few minutes. Other that eating it is the only time he sits still. So the iPad has to stay…2,2,2,2,2,2 included!

I worry what he will find to do tomorrow. I worry that one day there will be no red school jumper in his size for him to wear. I worry how I will continue to lift him in and out the bath, in and out of car seats and his buggy as he continues to grow and get heavier by the day. I worry that he might never ever speak. I worry how people will look after him. I worry I might one day be changing nappies on a teenager or grown man.

Right now I am wondering if he even cares about having a birthday party or if he would be happier alone in the play centre licking the balls and flapping his chest.

Then I smile knowing if nothing else he will love his chocolate birthday cake and whatever the meal is he will eat it like I haven’t fed him in the last 6 years.

Reality hits: I have a beautiful boy and he has made it this far. Whatever the future has we will get through it together. I booked him a birthday party today and there was a time I never thought that would happen.

That is the reality of life with disability: knowing there is still a long long way to go, but knowing you have come a long way too.

When reality hits.

My kid cried…let’s call a meeting

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Something about the ‘stay at home mum’ got lost on me this week. I was hardly home at all. One meeting was followed by another meeting, followed by phone calls and emails.
I am so grateful for having people involved in my children’s lives. I appreciate the work my children’s schools do and the professional involvement that they both have. But it is a stark reality that having two children with additional needs with two separate teams of professionals and two different school to deal with often means a whole load of meetings.
Add to that medical issues and everyday appointments like dentists, opticians etc and I once again realise why I am often more of a carer than a parent.

The reality is that meetings are necessary. I can not raise these children alone. I have had to ask for help. We have speech therapists, educational psychologists, social workers, occupational therapists, doctors, paediatricians, nurses, support staff, teachers, head teachers and carers all involved with the children. And they all need to know when things change.

Then there is church too. After almost six years attending crèche the tiimageme has come to discuss how we go about transitioning the twins into Sunday school in church. While other families just take their child to a different room one week, perhaps stay for a short time and then leave them, it isn’t that simple for me. So I had to have a meeting. The children need social stories, photographs of staff, visual timetables and lots of discussions about to manage behaviour, communication and anxiety.

Now school has returned and there are new teachers to work with, new support staff and medical issues to sort there has had to be meetings with both schools. I have had discussions with teachers, head teachers, support staff, seen where one of the children will be changed and sorted through lots of minor issues and misunderstandings. The transitions to new classes and starting school has been hard on the children. It has involved panic attacks, self harming, screaming, and a whole lot of tears. Only one of the children has the ability to tell me what has been going on. We needed meetings and phone calls to help sort out a whole page of difficulties for one child and meetings to sort out ‘unknown’ difficulties with the other child. School has brought with it such an intensity at times and family life has been very hard. While that is often just something families need to go through and you know it will sort itself out, when your child has a disability you have a duty to keep professionals informed in order for them to best help and support. No parent can have their child self harm or have daily panic attacks and just ignore it.

We had some teething trouble with transport. Lots of phone calls later and that seems to be more stable. We have had challenges with homework in a house where both children require 1-1 at all times. The balancing of needs is turbulent at the best of times but add homework into the mix and the storm hits with full force, from both children. So this needed discussed with school too.

Care plans needed updated, medical issues have needed addressed and sensory needs monitored. And it all involves lots of discussions and meetings.

At times it really has felt like the second one of the children cried we would be having yet another meeting.

Sometimes it would be nice to just get on with family life. It would be lovely to have privacy and not have to keep discussing daily how we will deal with today’s struggles and tomorrow’s worries. It would be wonderful to not have to read school diaries and feel the weight of concern when you read ‘they had a bad day today’.

But I have to accept that if my children have support then in turn I lose something of myself. I lose my time, my privacy and some of the confidentiality of family life. My children lose a lot of that too. In order to help there has to be meetings. People have to know when my children are in pain, highly anxious or upset. We do need to share sensitive information with others like when they have had bowel movements or what they have eaten. It has to be recorded for their health and well being. Sometimes that just upsets me. It can feel like an infringement of privacy at times but sadly for everyone these things need to be shared.

But can I tell you that today my kid cried. And I just dealt with it. No-one else will know why and there will be no meeting. Because in all these discussions my family still needs respect and privacy.

Just because my children have extra needs does not mean everyone has to know everything. Help us, don’t suffocate us.

I might just mention that in the next meeting I go to…