When everyone wants a piece of you

Another day. Another appointment. Another night of being woken through the night. More phone calls. More screaming. More bodily waste to clean up. More pressure. Never-ending stress.

Every parent gets stressed. Everyone needs a break at times from the 24-7 demands of raising children. But sometimes the added pressure of having children with additional support needs just becomes overwhelming when the days and nights become one, the paperwork piles up and everyone wants a piece of you.

What do you do when a professional calls you and you need to take the call yet your child needs your urgent attention at the same time (I could list any number of things they could be doing here like smearing faeces, climbing in a bath of water fully clothed, feeding the fish a tub of sudacream, eating frozen food from the freezer or escaping out of a window or door)? What do you do when you HAVE to find the time to complete urgent paperwork but your eyes can barely stay open and your mind can not focus due to exhaustion? How do you explain to a child with very limited understanding that their routine needs to change to go to yet another hospital or clinic appointment? What do you do when one professional says one thing and another disagrees and you are caught in the middle? How do you cope when mealtimes make you cry because your child just won’t eat and the other one just won’t stop eating? How do you remain at peace when your child comes home from school wearing clothes for the opposite sex because yet again he has gone through four pairs of trousers in a school day even whilst wearing nappies?

Everyone wants a piece of me.

I am expected to turn up at meetings and act professionally even when at times my heart is breaking. Crying is meant to be reserved for the privacy of your own home and only makes professionals question your mental stability if seen in public.

I am expected to follow through programmes designed by professionals who think they know my child better than me and who think I have nothing to do other than run with their latest plan.

I am expected to answer phone calls and emails in a timely, professional manner as if working in an office environment while the washing machine is spinning in the background, the children have technology at full blast (what other volume is there?) and the window cleaner is knocking my door asking for money.

I am expected to turn up to the right appointment, at the right day and time, with the right child, focussed, prepared and calm with a child who is alert, receptive and willing to participate in whatever therapy they are having today. And all this with a smile on my face and an enthusiasm for the programme.

I am expected to do homework with my children, take them to activities to ‘broaden their horizons and stimulate their interests’, give them a healthy diet and exercise, nurture their talents and spend quality time with them, when in reality we spend our evenings making chicken nuggets for tea again, watching the same programme on TV for the fiftieth time and coping with screaming children, toys and technology being thrown across the room and being physically attacked because I dared to run them a bath!

Schools expect me to jump at the first mention of ‘parent involvement’, hospitals expect me to fly my children to appointments (well they certainly don’t expect me to park given the lack of spaces they provide!), social workers expect to come to a house that is well run, clean, yet homely and comfortable, and my children need me to hold them, love them and help them all the time.

Yesterday I had one meal. It was one of those days. And the fact is I am not alone. There are so many parents in the same situation. Living with stress that is incredibly high, balancing meetings, appointments, therapies, professionals, children and the demands of running a home whist caring 24/7. Because despite the volume of people involved with my children it will still be me tonight who cooks them both tea, has clean clothes for them to wear to school tomorrow, reads them the bedtime story and kisses them goodnight. It will still be me who lies with them through the night while they cough or cry or scream.

It is me who knows them, protects them, loves them.

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Everyone wants a piece of me. But these two have a piece that no-one else can ever have. They have my heart. Every other piece of me can just wait while I take a moment to hold them. The phone can keep ringing, the post can wait a moment and the emails can stay unread just a little while longer. Whoever else wants or needs me these two always come first.

Ten reasons why I love my children’s obsessions

I imageam an autism parent. One of the things I have to cope with daily is my children’s obsessions. It sort of comes with the territory. There are times I could scream at the thought of watching another ten seconds of the same piece of video, or hearing the same script over and over again. Many times I would just love to pick up the endless rows of lined up toys to be able to just walk across my living room floor or have a meal without lines and lines of toys overtaking the dining room table. The compelling nature of my children’s obsessions has at times made me feel they hold Thomas tank Engine, lift doors or numbers in far higher regard than anything else in life, even me!

Their obsessions can have negative effects on them and others making them more socially excluded than they already are, or even making them the target of bullies. When they eat, sleep and breathe just one main thing it can be hard to live with and very exhausting. But when I look at these positives I have to admit, I really do love my children’s obsessions. Here is why:

1. It help them learn.
So many children with autism have learnt colours and numbers and words just by being obsessed with Thomas Tank Engine. Through my daughter’s previous obsession with Chuggington (trains are a definite theme here!) she learnt about turn taking (trains crash if on the same line at the same time), following instructions, helping others and working together; all concepts children with autism often really struggle with. Without her obsession such everyday basics would have been much more difficult to teach her as her brain was far more receptive while focussed on her current addiction.

2. It make them less anxious.
Like so many children with autism my daughter really struggles with anxiety. But while engrossed in her obsession or current trend she will happily escape into her own world giving her mind a chance to relax and settle from all the anxieties she carries around with her daily. It is often during play with her favourite toys that she will finally open up about something that has been troubling her. Everyone’s mind needs a rest once in a while and if escaping into her preoccupation helps her to ‘switch off’ then I love that she has that way of coping.image

3. It helps them communicate.
Naomi talks when she is relaxed. And she is most relaxed in her comfort zone of her current obsession, whatever that may be. We may only get scripted vocabulary at times but often this can be used to match feelings, fears or communicating a need. By tuning into her obsession and loving it with her I can interpret those means of communicating and help others to understand her too.

4. It allow others the honour of entering their world.
Naomi, like so many children on the spectrum, is happy to stay in her own little bubble. Social skills are not her strong point and she mostly relies on others to initiate interaction. So by having an obsession others have a way into this bubble that can help them reach her and help Naomi stretch her own world to include others. Sometimes she won’t allow this but without the obsession there is no key into her world at all.

5. It helps them socially.
Small talk is not her ‘thing’. But allow my daughter time to discuss her current interest and the start of a social interaction could begin. Even without knowledge of her specialist subject it is still possible to begin interaction with open questions about what she is holding, or lining up, or staring at endlessly from every angle.

6. It gives them control.
When she has had the demand of school to face all day and all the anxiety and stress this brings it is reassuring for her to come home to the security of her current fascination knowing she is in control of what will happen in her play. In an unpredictable and ever changing world this control helps her feel grounded and at peace. New toys do things she may not understand but when you know all there is to know about something and you are familiar with all the pieces and names you feel much more in control and happy. Where else could she get this control from?

7. It helps me to buy for them.
I hear so often around Christmas and birthday’s with families of special needs children that they have no idea what to buy for their children. Some children just don’t play with conventional toys (like Naomi’s twin brother who prefers watching lifts!) so the Argos catalogue and the Internet don’t help. When your child has a current obsession even if they have everything you can think of they will probably soon tell you of that missing train, or character, or whatever, that they need. And you can always have fun together making things related to the theme too. Every Christmas I am so thankful my children have some sort of obsession, even if it is only the number 2!image

8. It motivates them.
Recently Naomi was very ill with pneumonia and I struggled to give her a reason to get well. She had no obsession at the time so nothing motivated her to want to get off the couch and play or even eat. It is amazing how character spaghetti comes into its own when suddenly they want to eat just because it is Peppa Pig shaped! Use their interests to help get them to do things like get dressed, have a bath, and even walk to school. You will hear me say often ‘first teeth brush, then play with….’ Because it works!

9. It helps them transition from one thing to another.
Both my children struggle with moving from one thing or place to another. But using their current interest helps. We have had dinner with a line of Thomas tanks engines by her plate many times, and toy plastic food is a regular bath toy for my non verbal son. If it can go with them in a pocket…then it comes along with us. My daughter still takes a comfort toy to school in her pocket and it will always be related to her current obsession. It makes it easier for her to get from home to school and vice versa.

10. It makes them the interesting, unique, wonderful person people they are.image
Some obsessions have lasted years, others a few weeks or months. But each one get embraced as we go along on the ride with my children. Their interests are part of them.The same way everyone in life has a passion, a reason to get up in the morning, and something that gives them a ‘buzz’. It’s about accepting my children, using their loves in the best way I can and loving what they love…just because I respect them, accept them and embrace them for the wonderful unique individuals they are.

Am I Thomas Tank Engines biggest fan? Not really. Am I delighted to watch the same clip of lift doors opening and closing for hours on end? Not exactly. But these things interest my children so they interest me too. If I love them..then I love all that comes with them too.

Now I had better go. Apparently my son has found a different ten seconds of Peppa pig in Spanish he likes and he thinks I want to share that with him. I will love it of course…

Why can’t they take away his tumours?

I try not to think too much about my child’s medical condition. His classic autism I can deal with (well most of the time anyway), even the fact that at six years and six months old he has no language is just about bearable. The fact he has global delay and has the understanding of a young toddler is hard, but something that might improve. But when I talk about the fact my child has this condition called neurofibromatosis type 1 my heart still breaks, even though we have been living with it for over two years now.

This is not easy to write about but if it helps just one person then I feel I have to talk about it.

This handsome boy, full of life and energy and mischief, has a body that keeps making tumours!

imageAnd there is absolutely nothing I can do about that!

You see I know about autism. I can sit with him and work on that. He might never speak but there has been huge investment in autism and so many resources available. I can use the internet to access photographs, or even take some on his iPad that he can have instant access to. Then there is picture exchange communication that one day he may be able to understand. There is also makaton and British sign language. He can take me by the hand to things he wants and we can help his socialisation skills by taking him to a wide variety of places and hopefully in time introducing basic social stories.

I know he will always have autism. But the likelihood is he will improve, even if not by a lot.

I know about his global developmental delay. We can work on his physical skills, one day eventually we may even be able to toilet train him, and in time he may be able to use cutlery, wash himself, dress himself and learn basic life skills. Children with global developmental delay, especially to the level of Isaac, may never catch up with their peers but he will improve, even if he always needs support.

But his neurofibromatosis type 1? Well that is just another thing altogether!

I am educated and willing to learn. I know about the physical features like his large head, his skins marks (cafe au lait marks because they look like coffee stains) and his small height. I know that some of his learning difficulties is also due to his NF1 and that genetically he inherited the gene from his father. I see glimpses of how his body may look as he ages by looking at my husband. We know he will most likely get freckles under his arm pits, his cafe au lait marks will increase and grow, and he will most likely have fibromas (small tumours on his skin). Those are all things we can cope with. And I am sure Isaac will cope with them too.

imageimage imageIt’s just the unknown. The fact that when you say to people he has tumours the first thing they say is ‘does he have cancer?’, followed by the inevitable, ‘why can’t they take them away?’. That’s the hard bit. No he doesn’t have cancer, for which we are incredibly thankful. But he also can’t be cured. And should he develop certain tumours on his spine, or eyes, for example, he may one day require chemotherapy. But unlike cancer, there will never be the option of no longer having tumours.

He will always have autism. He will most likely always have global delay (although that may change to learning difficulties as he ages) and he will always have neurofibromatosis type 1. But unlike the others his NF MAY be stable, mild and not require treatment or it may throw¬†up hurdles we don’t want to even think about. Of course we hope and pray for the former and reassure ourselves this is how it has been for my husband.

Why can’t they take away his tumours? Sadly he would just produce more. And more. And more.

Do I want a cure for autism? Sometimes when I have tough days and my son is not able to be understood and is frustrated yes. When I spend longer watching lift doors with him than I do sleeping some weeks? Maybe. Would I like a cure for his global delay? Partly, but then he is slowly achieving things and I know in his own time he will get there. Would I like a cure for neurofibromatosis? Yes I would.

But then I look into these big brown eyes and I think I couldn’t possibly love this boy any more than I do. And I know whatever the future holds…well we’ll get through it…one lift at a time!
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When the invisible disability becomes visible

imageSomething has changed quite recently. Something simple, yet from societies point of view, something quite life changing.

It isn’t my son. His needs and difficulties are exactly the same as what they were yesterday. He still can’t speak and has limited communication. He still has global developmental delay and learning difficulties. He is still doubly incontinent and vision impaired. He very much still has autism. His genetic condition (neurofibromatosis type 1) hasn’t miraculously disappeared. He needs full support to meet his every need. But something quite fundamental has changed for him.

For the first time his invisible disabilities have become visible.

He has always flapped in public. And screamed. Those just generated stares and cheeky remarks.

He has always made strange noises and avoided eye contact. They have just made people look the other way and pretend they don’t notice him.

We have used disabled toilets now for some time. I think some people think I am someone very special because I pull a key out my pocket to open the locked doors.

We park in disabled parking spaces and display a ‘blue badge’. But still we get questioned and accused because we lifted a child out the car who then proceeded to walk to where we were going. Why does society only think you are disabled if you physically can’t walk?

We have endured awful comments, hurtful stares and had many people avoid us when our son has been in obvious distress over sensory overload or frustration due to communication difficulties.

We have had to live with the fact our son did not ‘look’ disabled so according to most people that meant he couldn’t be disabled. It was frustrating, distressing and hurtful.

But now that has all of a sudden changed. His invisible disability is now blatantly obvious. And the difference in the public attitude is incredible.

We have just been given a wheelchair for Isaac.

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So suddenly people are smiling at his flapping, they find his noises endearing and cute, they even open the door to the disabled toilets to help me in. They no longer have issue with me parking in a disabled bay because they see a wheelchair coming out of the back of the car and a child lifted into it. Strangers are coming up and talking to us like we are no longer contagious. When my son screams, rocks and bites himself people are wanting to help and asking what they can do to assist instead or avoiding, talking about us behind our backs, or staring at us in disgust.

When we take him to appointments now people are going out of their way to help and support. Even medical professionals seem to take thing a little more seriously. People are listening, respecting and supporting where before these were all major challenges.

All we did was sit him in a chair with wheels. But it shifted things.

They told me having a wheelchair would be life changing. I certainly would agree with that. A simple chair with wheels and handles has made life more pleasant, more manageable, and much safer. I was expecting it would be major for us.I just never realised how major it would be to everyone else.

When the invisible disability suddenly becomes visible we change how we behave. I viewed my son as disabled but now because of a simple wheelchair others see him as disabled too. The thing is he is just the same Isaac he was before. The only thing that changed was a set of wheels.

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