Respite is not failure

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It is one of the many ironies about having children with additional needs: we fight long and hard for respite but when we do get it we struggle emotionally to accept and embrace it.

Let me get this straight right from the offset: respite is not failure!

The dictionary defines respite as: “a short period of rest or relief from something difficult or unpleasant”

I want to start by saying I do not find my children unpleasant. Neither do I wish to cease being the parent of two special and unique children. But the reality is my life is very intense. My children need so much more extra support just to get through every day, they have far less independent skills than they should for their age and we have more appointments in a month than some families have in years.

Physically it starts to take a toll at times. My son is three-quarters of my height now and a third of my body weight. Yet he is only six. I still have to physically dress him like a baby, support him climbing stairs, change his nappy and dry him after his bath. His behaviour can be physically challenging and his latest ‘game’ of pulling hair until it comes out into his hand is painful. At times he requires restraint and as he has no concept of personal space he thinks nothing of climbing over me or sitting on my knee for a cuddle like a baby. I still need to lift him in and out the bath and sometimes help him onto a chair. He can not even put his own shoes on.

Sometimes, just for a little while, my body needs a rest. Respite enables my body to recover from the difficulties and gain strength to do it all again tomorrow.

Emotionally it takes its toll at times too. Only this morning I found myself walking home from the local school in tears. I spend a few hours there every week volunteering and today I was working in the class of children my son’s age. As they sang to me in French I realised my six-year-old could still not sing the same song to me in English. That has to affect you. While the children talked to me about Egypt I realised that my son can’t even talk to me about his day at school. And the reality is he may never even say his own name. Everyone needs time to cry sometimes but parents of children requiring extra support need that time even more. The pain is raw, real and is right in front of your eyes everyday. The emotional toll of hearing your child cry because no-one plays with them, or dealing with the emotions of someone laughing at your child in public, watching your child harm themselves in frustration, or dealing with professionals who don’t seem to be listening; it all drains you emotionally.

Sometimes, just for a little while, my emotions need a rest. Respite enables my heart to recover from the stress and gain strength to face it all again tomorrow.

It takes its toll on relationships too. I read recently that parents of children with extra support needs are twice as likely to divorce than others. Wether that is true or not I can sure testify that raising special needs children tests your marriage in ways you never thought it would. How do you find quality time for another adult when your children’s needs are 24 hours a day? How can you support someone else when you often struggle yourself? We all deal with stress differently but getting precious time to regroup and discuss things is very rare when you are either dealing directly with your child or attending meetings and appointments to discuss them.

Sometimes, just for a little while, I need time for other relationships. Respite enables me to be a wife, a sister, a daughter and a friend, all of which make me stronger, happier and healthier and help me be a better mum.

I am so blessed to get three hours respite a fortnight. It is the most treasured highlight of my fortnight. It is no exaggeration that it has saved my marriage, restored my physical health and given my emotions time to settle. It is also helping my children learn that others can care for their needs and help them just as much as me.

I need respite. That is not a sign of failure but in fact a sign of success. It shows I know my limits and I am not too proud to admit them. It shows I am willing to let others support me. It shows I am human.

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I tried to find myself and realised I was lost

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When you have children you expect it to be all consuming…for a season. It comes with the territory to have more nights in than nights out, to swap posh restaurants for McDonald’s and to exchange studying for homework with the children. The pre-school years are supposed to be difficult, tiring and challenging. But the light at the end of the tunnel is that one day soon they will go to school and you will start to get your life back…at least to a degree. And as they go to high school and later college or university and gain more and more independence, so as a parent you get more and more ‘me’ time to restore the balance in your life.

But sometimes the child you gave birth to, held in your arms and sang nursery rhymes to, just isn’t developing like they should. And one day you realise the likelihood of them living independently, marrying or holding down a full-time job is a reality not entirely guaranteed.

I love my children, but I found the pre-school years of raising my twins very challenging, physically as well as emotionally. Somewhere during that season I lost myself.

I lost my excitement in the continuous nappy changes (which are still ongoing).
I lost my spark in the hours of never-ending sleepless nights. (Still having those too!)
I lost my enthusiasm in the cooking, cleaning, bathing and caring for two growing children who required so much attention. (Still doing all that too!)
I lost my heart in the discovery that both my babies had autism.
I lost my hope in finding out my child had an inherited genetic condition causing him to grow tumours throughout his body.
I lost countless tears trying to teach my child to speak (He is still not speaking)
I lost friends when we realised our lives were going in different directions and I could not join in the parenting boasting game.
I lost sleep worrying how my children would ever catch up with others and survive in school.
I lost my pride begging for help when it seemed overwhelming.
I lost my strength in the never-ending battles for support.

Caring becamee all-encompassing. Autism became a way of life. When the day came and my children finally started school I was sat writing social stories, printing out visuals, finding games to support them or researching online to help them. And when I wasn’t focussed on my own children I was supporting other families in the same situation. I had redefined ‘me’. I lost myself in my children and their needs. I lost part of me to autism.

A friend asked me recently how I was enjoying my free time now both my children were both at school. I had to think twice about what free time even was!

I thought my children were lost in the world of autism. It turns out I have been trying to find myself recently and realised I am just as lost as they are, if not more.

There is more to me than being a carer. There is more to me that being an autism parent. For my own sanity and mental health I need to find who I am again. Did you know you can be a wonderful parent, a great carer and even a warrior autism mum and still do something else besides look after your children full-time? In fact I am sure the more I actually find myself the better I will be at the rest of it all.

I have gained so much as a person, a mother, a wife and a friend these last few years. Raising two children with autism is making me stronger, more confident, more out-going and more aware of others. I have become resourceful, educated, thick-skinned and bolder. I cry more but I also celebrate more. I have learnt to listen when there are no words to hear and pray like I have never prayed before. I am a different ‘me’ to the one I was six years ago.

I tried to find myself recently and I thought I was lost. It turns out I have just been cocooned in a world of caring, disability, the high support needs of my children and everything else that has entailed. It is now time to take hold of all I have gained and rediscover me.

I want to thank these two for making me a better ”me’ than I ever thought I could be.

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My best friends…the beautiful flowers

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Sometimes I just don’t want to know about my daughters day at school. It seems contrary to all good parenting advice but when I asked my six-year-old whether she had any friends the other day she told me she spends her outside social time at school talking to and looking at the “beautiful flowers”. I just can’t bear to hear any more.

I know the school well. I know the names of every single child in her class. I even volunteer within the school for several hours a week. I talk to the Head on first name terms.

My daughter is not being bullied. She is just unable to play with the other children. Her social skills are limited. She takes what the other children say in a very literal way. She is vulnerable. Her interests are far different to the others of her age and ability. She is socially isolated and happy in her own world. She is surrounded by children who know and understand popular culture, current television characters and have physical skills she has yet to even attempt. She has only one current interest which not one other child in the class have even heard of. She is a little girl with autism in a world of mainstream children.

Her perception of what goes on in school is so different from the other children. Where others listen to a story she will home in on that one child who is biting their nails and tell me at home how biting your nails is not good and that child should have been told to stop. It is only when I deduce that the children were sitting on the carpet that I figure she was perhaps having a class story. Her tales of school are all about what children did to break the rules, whose name was taken down the tree today (a behavioural chart used in the class) and who touched her and when (she hates being touched!).

Try as I may she can not grasp that the world can be seen another way. Her autism prevents her from seeing things from other people’s viewpoints. And this is impacting on so much now. Even in the simplest tasks like reading. When I asked her the other night why she still had the same few words home to practice when I was confident in her ability to know those words she said, “I read them to you mummy so why do I have to read them to the teacher too?” It was a genuine question. In her mind she knows them. She knows that and I know that so why would her teacher not know the same thing? She is genuinely ‘blind’ to the fact the teacher will not know she knows them without her reading them to the teacher. The same way she thinks I know exactly what goes on in school because she does so why would I not too?

This is happening to so many children. ‘Inclusion’ is the way to go apparently. It is a very delicate balance between what is right for my child (and many like her) academically whilst balancing the child’s social and emotional wellbeing. School is like a mini real world where she will be misunderstood, become confused at things others find easy and just interpret everything in a different way.

She is the proverbial round peg in a square hole. It is about allowing her to be her, allowing her to be autistic but balancing that against her mental wellbeing and self-esteem when she seems so different. It is a very difficult balance and one that needs very careful monitoring.

So today as I walked my beautiful daughter home from school, with trepidation, I once again asked her how her day had been. “Oh mummy, wait until I tell you what happened to my friends today…” It was beautiful to hear her happy, animated and excited and talking about that elusive thing we call ‘friends’.

Has someone lost a tooth, had a birthday, had a new baby brother or sister, or even asked her to play I silently wondered.

“My friends, the beautiful flowers, opened up for the first time today and now they look even more beautiful!”

Maybe I have it all wrong. There is an area in her playground full of greenery, shrubs and flowers. But the one flower my daughter noticed was the one that was different. Because it was more beautiful, more noticeable and something very special indeed.

I think today she just told me the most beautiful thing about school I ever heard.

Why is it always about children?

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

Why is it always about children? See for yourself…

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

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

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

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

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

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

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

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

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

Forced onto my knees to beg for support

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I try to stay positive. I try my best to work within the system and I am very grateful for each and every professional involved with my children. But right now I am forced onto my knees to beg just for basic support and it is disgusting.

Here are some examples:

My six year old child is non verbal. He has complex medical and developmental needs. He has a diagnosis of classic autism, neurofibromatosis type 1, global developmental delay, severe learning disability, vision impairment and pica. He attends a specialist school miles away from our home. Yet despite the fact he can not jump, balance on one leg, speak a single word, dress himself, is not toilet trained and his understanding is very limited, he is not able to receive any physiotherapy or speech therapy! You see apparently they would not ‘add value’ to what he already receives, which in fact is only one sole autism occupational therapist who currently sees us at home once every three months! So school are left to do what they can and we are left with a very frustrated, self harming, agitated child with no means of communication and a high level of care needs.

It isn’t that I haven’t tried fighting the system for him either. I fought to get him diagnosed from when he was less than a year old. No I didn’t want my perfect baby boy labelled with a life long neurological condition but I knew early on that despite policies stating support would be based upon ‘need’ rather than ‘diagnosis’ it is very hard to get the ‘need’ recognised without an actual name. And ‘autism’ is way easier to write than ‘difficulty communication, socially unaware and unresponsive and engaging in repetitive activity including flapping, rocking and self stimulating activities. In addition it appears my son is not meeting milestones expected of his age including sitting, walking, speaking and self care skills.’ Writing the latter on so many forms was giving me writers cramp!

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So we got the diagnosis. We fought and got him his school. And now one by one the system is just dropping him like a hot potato. It seems my child is too costly. He can not enable professionals to tick boxes quickly enough, he is too time consuming. Instead they sent parents on training courses (at the parents expense), pay them £61 a week ‘carers allowance’ and leave them to get on with it. They won’t even provide my child with a wheelchair to enable me to take him out safely. Almost three and a half years ago they supplied him with a disability buggy and now this is no longer suitable no-one seems to care. Numerous referrals to wheelchair services later and once again we are still getting nowhere.

But we don’t just have one child. Our second child also has autism and she too is being failed by the same system. A recent visit to our paediatrician confirmed verbally that she is likely to have hyper mobility syndrome. This would certainly explain her joint pain she keeps telling us about, her exhaustion and her ‘interesting’ ways to sit and feel comfortable. It could also help understand her physical delay and inability to meet physical milestones.

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It is one thing to hear your child is struggling. It is another altogether to try and secure help for them. I asked for my daughter to be referred to physiotherapy 13 months ago. Three referrals later and we are STILL waiting to receive word from them. She is forced to use her brother’s disability buggy when we are out due to pain and exhaustion (while we struggle to deal with her brother and his needs without adequate equipment) since wheelchair services are not accepting a referral for her. She is also being let down by speech and language too and is left to struggle in mainstream without so much as a visual timetable. I could have cried witnessing her standing in the middle of her class with her coat and outdoor shoes on as she tried to process the steps required to her daily morning routine. What other children did without thinking required so much more processing for her, yet no-one seems to want to help or support.

Would you believe both my children have all the necessary legal support plans in place? They have fully recognised needs and they have been in the ‘system’ for many years. They also have parents who continually email, phone, self refer and devise strategies of their own to help them. We get the grand total of three hours respite a fortnight. We get very little sleep.

I feel so let down just now. I am watching my children suffer through lack of funds and a system looking for quick fixes. I am a grown woman. I am a strong parent.

But right now I am forced onto my knees to beg for support.

And that breaks my heart.

Would you swap your hand?

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Some years ago I was giving a friend a lift home in my car when she shared some words of wisdom, quite unplanned. She was going through some difficult times but reflected that if life was like a game of cards and we were able to fully see the cards everyone else had in their hands we would always choose to keep our own hand we had been dealt with.

There have been times I have felt unsure about that thought, feeling hard done by or feeling I have been given a raw deal in life and the idea of swapping with someone else, whose hand seems so much easier, appealed greatly. We all have times when the grass always looks greener on the other side. We look at the smile on others faces and assume the hand they have is easy and they are going to win. We read status after status on social media and assume everyone has a wonderful life because this is how they choose to paint it. Many have mastered their poker face. Years of playing the game has convinced them there is advantages to hiding their pain and smiling through difficult times. But what if you had the ability to see the full hand they had been dealt with? The chances are you would look at your own hand with a new perspective and appreciation.

There have been times I have wanted to lay my hand down and quit. As my children received diagnosis after diagnosis, my home got repossessed, appointments mounted up and nights were never-ending, quitting seemed so much easier than playing on. My ‘losing’ appearing so much worse by seeing others ‘winning’. But the fact is while you still have cards in your hand you have everything to play for. For a season I just needed to concentrate on the hands I had: the beautiful children I got to kiss each night, the roof above my head, the food on my table. A few special cards can mean so much more than a pile of insignificant ones. Used strategically and carefully any hand can be amazing for the right player.

There have been times my hand has seemed huge. I have felt blessed by friends around me, my marriage has seemed strong and my cupboards have overflowed with abundance . Many have looked at me with respect or jealousy thinking I have it altogether. They have wanted to swap hands with me thinking life must be easy for me. They have looked at things from the surface seeing only what looks like blessings. They see a new car in my drive, they see children’s toys in my garden and they see my children with expensive technology. It all looks fantastic. They think my life must be effortless. They perhaps don’t know about the times I looked on them the same way with those similar feelings. Because they are not able to see my full hand they may not know that the car is leased through a scheme for the disabled because of my child’s complex medical and developmental needs. They may not know that my son carries an iPad around with him as it is his only form of communication because he is totally non-verbal.They wonder how I can afford to stay at home instead of ‘working’ without realising my job as a carer may be unseen but it is extremely intense both day and night.

Other times it can all seem quite equal. The dealer deals the same amount of cards to everyone and the game is anyone’s call. But as each player sees the hand they have been given and does their best to turn it into a winning hand it is important to always look at your own hand as important, beautiful and worthy. Even the humble ‘2’ can become a winner to the right player. It is all about how it is played that counts.

Wether you are playing the hand of a single parent, raising children with disabilities, wrestling with health issues or struggling with huge responsibilities of caring or debt, always remember that if you had the ability to fully see the hand that others are carrying you would realise that, in fact, the hand you have is the very one you can handle. You have that hand for a reason.

I don’t know your hand in life. I don’t know your struggles or you talents and gifts. But I have faith in every one of you. I have faith you can take that hand you have and win the game. You can become a gifted player in life no matter what hand you have been dealt. Just keep playing.

Do you fancy swapping your hand? Just remember everyone is fighting battles we do not know. The other hands may not be all they seem. And if you had the ability to see everyone’s hands the chances are you would always take your own back. So keep your hand and use it to win. However long you get to play, play it well.
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What if the hare doesn’t nap?

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Most of you will be familiar with the age old story of the Hare and the Tortoise, one of Aesop’s fables. The story being that a hare and a tortoise race. Of course the hare, being by far the fastest, takes a very early lead and, not seeing the tortoise anywhere behind him, decides to take a nap. Meanwhile the tortoise continues slow and steady and in doing so passes the hare and wins the race. We can all pick out the moral easily about not being over confident in life and that there are advantages to going slow and steady.

I am a mother of two children with additional needs. We are living every day like the tortoise and moving at a very slow pace. We have missed more childhood milestones than we have reached so far. But we keep moving even if at times it feels impossible to catch up with others.

This last week my son got to go to mainstream school for the first time. Except, like so many other things in his life, it came years later than it should. And even then it was only a fleeting visit. But, just for once, I got to walk both my children home from school. It was beautiful. But it won’t happen as a daily occurrence. Because although I can dream and pray, the reality is he will never catch up with the hare’s in life.

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Because in real life the hare doesn’t nap.

In real life other children won’t take a ‘nap’ from their development to allow him to catch up or even overtake. They won’t stop learning, or maturing or gaining new skills. Life is not a fable, and there are no fairytale happy ever afters.

But that does not mean it is all sad. It just means I have learnt to accept that the race is not for winning but rather for taking part in. We are not all equal. But my job as a parent is to make sure my children never feel like failures because they are taking the race slow and steady. It could become easy for them to become intimidated by the speed and ease at which the hares are moving along. They could get frustrated, depressed or feel overwhelmed at the never-endingimage struggle just to master a little skill others did years ago. So my job is to make a huge deal of everything the hare takes for granted but the tortoise finds so hard.

Like the fact at six years and three months old my son finally worked out how to build a tower out of bricks. So what that he failed to do this task when assessed at his two-year check up? So what that babies younger than a year have mastered this skill with ease? He moved slow and steady and finally did it. He actually got to the end of that race even if it took years to get there. They just assessed him on the skill years earlier than they should have.

Like the fact at age six his sister mastered jumping for the first time. The himageares did this before they even started nursery and they are now onto skipping, hopping and riding bikes. And most of this probably went unnoticed. But we celebrate everything in this house. We celebrate the first snowman ever built:

We celebrate every little noise that may vaguely be the sound of a word. We celebrate getting invited to a hares birthday party because being with the hares is so good and often so rare too. There were fleeting times that it was hard to tell the difference between the hare and the tortoise at the party as both sat together to share food and drink. Hares are beautiful, agile, and wonderful. Just like the tortoise is too.

The hares may be winning the race with ease but I have no bitterness or anger about that. Because that is what hares were made to do. But my children are tortoises. They are hardy, colourful, strong, like their own company and move carefully and thoughtfully. Sometimes they just hide inside themselves for a while until they feel confident.

Meanwhile the hares don’t nap.

And neither they should. Life isn’t a fable. But we can still learn lessons along the way.