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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Just don’t ask my neighbours!

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Most of the time I am happy that people don’t know what really goes on behind my front door. I live in a quiet dead end street in an end terraced house with neighbours either side of me. Ordinarily that would be fine but I also have two children with additional support needs. Between them both they have diagnosis as long as my arm including autism, global developmental delay, neurofibromatosis type 1, anxiety, visual impairment, learning difficulties and a whole heap of sensory issues. One of the twins is non verbal.

Maybe one day I will tell my neighbours some of their issues. But right now I am having fun wondering what they might tell you about us.

The lady two doors down might tell you about the morning she saw me wave my daughter goodbye to nursery on the bus while she happened to look out her window just as my son was running down the street flapping wearing nothing but his red school jumper! If you are going to talk to my neighbours it may be best to avoid that one.

The previous neighbour to my right that moved out last year may not have been a good choice to talk to either. He might tell you about the time he caught my son standing at his camper van licking it clean! Thankfully he sold up and moved out a few months later so I might not hear about that one again.

Mind you the couple and their son who moved in after him may be best avoided too. They would only tell you about the screams they hear from my children most nights like they are being killed. I could tell them I am only cutting heir nails or washing their hair but somehow I doubt they would believe me.

The neighbours the other side are not the best choice either I’m afraid. They could tell you about the time they had friends over for a BBQ and turned around to find my son helping himself to the food while they were all busy chatting. Please, please avoid the wife! She was sunbathing one day and as she looked over her hedge she saw my naked son running along side the hedge with his eyes right up against the bush peering through it. I maybe should tell her he is visually impaired but unfortunately she isn’t, so she probably thinks the naked child requires more of an explanation. She hasn’t been sun bathing as much this year for some reason.

The elderly lady across the road could tell you a good few stories. Like the time she saw us manhandle our child into a taxi and wave goodbye to him and he screamed in sheer horror. One day I might explain it was a different colour car that day and he could not cope with but in the meantime it maybe best to keep your distance. She has also saw us a few time wave our hands in glee as the children left for nursery or school and I have a feeling she thinks we look too happy to see them go. There could be some truth in that some mornings.

When we moved into this street we were reliably informed that it was quiet and that there was very little movement in terms of people selling up. It was seen as sought after. We seem to have pleased the estate agents though as since moving in at least three houses on the street have changed hands. We must be a good influence I think.

I’m quite sure my neighbours wonder why my son always wears the same school jumper everyday. Or why we have so many ‘visitors’ who come for around an hour a time and then go again (Social workers, occupational therapists, speech therapists, physiotherapists). They are maybe suspicious of the plain white van that drops huge boxes to us once every two months (nappy delivery month), or wonder why we get our refuge collected once a week when they are on a fortnightly schedule (that’ll be those nappies to blame again!). If they knew where we were going they may wonder why we take the kids to hospital appointments so often or why if they come to the door it is always locked and the key hidden away (think back to the half naked child escaping). They may wonder why my son never talks to them or my daughter won’t look them in the eye. They may even wonder why they see me regularly carrying six year olds who are screaming and trying to bite me. They have no doubt not seen many parents hang out bedding that is half eaten before or hear a child so distraught because you dared peg an item of clothing out without the pegs matching. If they saw my weekly shop they may even judge us for buying only the same select few things every week. A balanced diet in this house means a biscuit in each hand sometimes!
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I’m not sure my neighbours have heard of autism. But I do know they have heard my children! If you want to find out about me please talk to me and whatever you do…just don’t ask my neighbours!

The week time stood still

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This week has been a battle of an entirely different sort. I am used to battling the system, fighting to get my children the services they need, coping with the demands of autism, living with the uncertainty of neurofibromatosis, sleepless nights and fussy eating; those are just the norm here. But this week brought an entirely new challenge: a very sick child.image

For five days and five nights I battled to keep my six-year old’s temperature at bay. I battled to get her to keep down fluids and to stay out of hospital. I would have given anything to see her flap, repeat phrases from the TV or line her toys up. I held her, I willed her to get through it, I begged her to drink. And when she dropped off to sleep I cried.

Everything just stopped.

Time stood still.

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I was so thankful that the Easter spring break had just finished and Naomi’s twin brother was able to go back to school. Naomi needed all of me and she needed me day and night.

I carried her twice to the doctors. She just kept getting worse. My poor little baby is now on her third set of antibiotics in three weeks. This time it is a longer course and we seem to have finally brought her temperature down.

The diagnosis is atypical chest infection which has built up immunity to the common antibiotics. Her body is weak.
Meantime as life seemed to carry on in slow motion everything is ‘on hold’. A recent meeting in her school highlighted the fact she doesn’t drink and barely eats in school at all. Now because she has been so poorly all her targets have been adapted and strategies will be put in place on her return to try to help her regain her physical strength. The fight for her health is far from over even when her medication is finally completed.

This is when it really hits you.

Having a child with such restricted food and drink intake is serious.

So many people see autism as a minor developmental condition. But for many, like my daughter, it can lead to quite serious health conditions. Autism did not give her a chest infection but her limited diet, constant anxiety and lack of nutrition has weakened her immune system and made her susceptible to infection.

And until she is well again life is on hold.

She is only able to drink one drink right now. And now is not the time to even think about meddling with that. Physio is on hold, her education is on hold, home visits are on hold and so are all her brother’s appointments too. Time is standing still.

And when it starts to move again everything will be different. We will be playing catch up for a long time to come.
But at least I can hopefully be mummy again rather than nurse. I can’t wait to see her playing like this again. It is so hard to believe this was only 9 days ago!

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To the woman on the helpline

I called you today in desperation.

Yes, I am stressed and sadly you got to witness that in all it’s glory. Thankfully we will (hopefully) never meet. I ended today’s conversation in tears and there was so much I didn’t get to explain. The fact I even got to speak to you when both my children were in the same room as me is pretty amazing in itself. You probably think I am crazy so I hope this shows I am maybe not as crazy as you first thought. If I came across as emotional, stubborn, even perhaps agitated, I hope this letter makes you realise it wasn’t you I was getting at. I am just a mummy desperate to help my baby and today that happened to involve you.

I honestly don’t make a habit of calling helplines and crying for assistance. Sometimes I just don’t know how else to make my child better.

You see when I called you this was what my six-year-old was doing:

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She is sick. Again. For four weeks now she has had a cough that just won’t budge. She is already underweight. The doctors say she has a chest infection and the day before I called she was given her second dose of antibiotics in just two weeks. No mum can bear to see their child unwell. It is like a stab to their own heart and they would do ANYTHING in their power to get them better. The thing is to get better my daughter needs to eat and drink. Unfortunately this is a real challenge at the best of times and a hundred times worse when she is sick.

She has a very limited diet. She always has done. The only two things she has drunk since coming off breast milk is cows milk and a certain brand of orange squash that happens to be made by the company who employs you.

The doctor said milk would make her condition worse. So that only left the juice. I went to make her some and realised we had just run out. Her dad popped to the shops for some. He couldn’t find any. So he drove to another shop. Same problem. We just could not understand why this was, so he tried a few more shops. Still no sign of the juice. I tried tempting my daughter with so many other drinks. She would not take anything and was crying for her favourite orange drink.

When Naomi gets something in her head nothing but nothing will shift it. She smells everything to make sure it is right before it passes her lips. She examines what it looks like and often feels the temperature and texture too. She has sensory difficulties which affect her eating. She has rigid thinking which means she likes things as they always are. She struggles with change. She needs routine in order to feel safe. She has a condition called autism. She wanted her juice and would dehydrate rather than drink anything else. My heart was breaking for her so I thought I would just call and ask if you knew where I could purchase some of her juice.

I wasn’t intending crying on you, honestly.

Then you told me the worse thing you possible could ever say. And that is why I cried.

You told me you had stopped making her juice and you had no plans to make it again. Just like that you broke my daughters heart. And that broke my heart.

In the six and half years of living with my children’s autism I have rarely been so desperate. I remember pleading with you to help me. I remember saying she has autism and yet you said there was nothing you could do. I had to hang up I was so upset.

Your company now see me as a pest. I have written on your social media sites about my daughter and created a storm you don’t like. Kind people from throughout the UK have been looking out for the juice, buying, posting, bringing it to my house and giving me online links to buy it. There is a massive autism community out there and we stick together.

Today it was my daughter and your company. Tomorrow it could be another child and another company.

It is not my daughter being stubborn or obnoxious refusing to drink anything else. This is autism. It affects children and adults. Change has to be gradual, supported and is a process, sometimes taking years. It can not be done when someone is unwell. Sometimes, despite everything we try, change still never happens until the person is ready.

You shook my little girls world. You devastated mine. I do understand you were simply the messenger, the call handler, the employee. So I am sorry you witnessed this mamma breaking down.

My world is fragile. My daughter is fragile. I just never realised quite how fragile we both were until I called you.

Thank you for understanding,

One stressed and emotional mum.

P.S. Naomi is now much better thanks to us getting some juice eventually. We took her to a shop today but she refuses to walk down the drinks aisle because her juice isn’t there anymore. And she keeps repeating ‘why can daddy not buy my juice?’.
I just can’t answer that one.
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