Because a disabled child is a disabled family…

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Firstly, I want to stress that I am blessed. But secondly I also want to say that I still struggle.

I struggle with everyday things like taking my children out, buying food when we need it, cooking a meal, juggling hospital appointments with picking up children from school and nursery, dealing with the piles of paperwork and phone calls that have to be made whist functioning on just a few hours sleep, and trying to give both my children the time and attention they need.

My children are both disabled and therefore my entire family is disabled. That may seem a strange thing to say so let me explain what I mean.

This week my children have had some time off again for a holiday weekend. Like parents around the world I want to spend time with my children and enjoy them while they are young. The weather was not in our favour one afternoon so I thought I would do some basic baking with them. They are both 5. One is at school and the other nursery. How hard can it possibly be to make some chocolate crispy cakes?

Nothing is easy when you have a disabled child. My daughter was super excited about baking. My son could see it was something to do with food when the cereal packet came out the cupboard but that was all he understood. I explained the process to them using photographs (google is my friend) and we filled a mixing bowl with some cereal. And then everything went rather crazy after that! Because his sister had poured cereal into a mixing bowl and not a cereal bowl; because she wasn’t sitting at the table to eat breakfast like he expected from seeing the cereal out; because he had no idea what we were doing. So he lashed out. He screamed, bit himself, banged his head on the floor and threw everything about he could get his hands on. What should have been an enjoyable family activity was now becoming yet another casualty of my sons disability. Once again his disability was spilling into the entire family. My daughter could not continue baking, I could no longer give her attention or help and my son was seriously struggling. In the end Naomi made the quickest crispy cakes ever and Isaac sat and ate a bowl of cereal with some chocolate drops in. I made the mistake of trying to drop some melted chocolate in for him. Never again! The photo shows a smiling girl with a cake. But you just don’t know what else went on that day just to achieve that. One disabled child not coping and the entire family struggles.

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Then there was a 9am appointment for one of the children. That is quite common for us. Appointments in general are so common it is rare to have a day without one. But certain times make negotiating the logistics of family life a real challenge. How do you get one to an appointment and back to school 13 miles away and the other to nursery a mile in the opposite direction at the same time? Any family having to juggle hospital, clinic and therapy appointments with other siblings, work commitments and family life knows this dilemma. The disability of one child has a huge knock on effect on the others children and the parents. So often parents of disabled children are unable to continue working because the level of commitment needed to attend these things impacts on working life so much. A disabled child becomes a disabled family.

Then there’s the places you just can’t go to because your child is disabled. Yes more and more places are wheelchair accessible but that doesn’t make them autism accessible, or suitable to take an ill child or a child prone to seizures or public outbursts. Or even make them safe for a child with developmental delays or the ability to escape within seconds. As my children grow the list of places I can take them both to gets smaller. Holidays make that worse as everywhere is busy, noisy and unpredictable. Taking them to the local grocery store just to pick up basics takes military planning, praying the one (yes you read that right just one) disabled trolley is available, the music isn’t too loud, the layout has not been changed and the checkouts are not too long. I can’t just tell my children to follow me, or hold their hands or ask them to help. Picking up a pint of milk is as hard as an army assault course when 9 months pregnant! It is exhausting. One disabled child is all it takes for an entire family to be affected.

Emotionally disability affects everyone too. Parents worrying about test results, operations, high temperatures, infections, the next therapy sessions, the fight for the right services, the concerns about the future. Brothers and sisters torn between wanting time with their parents to support them whilst realising that far more attention has to be on their sibling. Children often becoming young carers long before they should have any real responsibility. Young ears hearing things that no child should have to hear simply because there was no child care to go to and so once again they had to ‘tag along’. Children seeing adults cry and not knowing how to cope with this weight. Brothers and sisters coping with their toys and valued possessions being destroyed by a sibling who never seems to get told off, or who doesn’t seem to care. Children afraid to tell their parents they are being bullied because they don’t want to add to the already heavy burden that their parents are coping with, or worried about asking for money for a school trip because they know money is tight, or even struggling with feelings of resentment towards all the attention the disabled sibling seems to get. That balance is often impossible for parents of disabled children to get right. Whilst one child might be registered disabled, emotionally everyone in the family is disabled too.

One child wakes up screaming and often the whole family gets little sleep. One child is sick at the dinner table or throws the meal across the room and no-one gets to enjoy a meal. One child refuses to go to school or wear the uniform, every child is late as a result. It is a ripple effect.

We need to support disabled children. We need to continue to spread awareness of disability in all it’s forms and continue to invest in services, therapies and medical equipment. But we also need to remember the parents and the brothers and sisters too who live disability on a daily basis. They might look fine but remember…a disabled child is in fact a disabled family. And they ALL need our prayers and support. Thank you!

An open letter to my friends and family

Dear friends and famiy,

I love you and appreciate you so much. Your thoughts, your support and your prayers really encourage me. But I know that sometimes I hurt you because I am not able to come to things that are important to you. I really am sorry. This letter is not an excuse or even a cry for sympathy, but rather a letter to explain my heart and my actions because I realise that things are not always obvious. It appears sometimes that I ‘back out’ of things at the last minute, or I just plain so ‘no’ to things you find hard to accept. I am also much less able to commit than I ever was before. And even when I am at things I am tired, poor company, very distracted and seem pre-occupied and uninterested in being there. My mind and heart are elsewhere.

I am a mum. Like all mums my children are always in my thoughts. But the needs of my children are very high. And, although in lots of ways my life is like any other mum, is so many ways my life is very different. Everyday is very stressful and nights are very interrupted and don’t last nearly long enough. I am permanently sleep deprived. So if I forgot about your party invite, or that coffee date, or your birthday, please forgive me. One day runs into the next and my diary is bulging at the seems with appointments for two disabled children plus my own affairs. This year I will try and get the balance right even if at times I only get to send you an e-card and online voucher. It isn’t because I don’t care. It is only because there just wasn’t enough hours today. Or yesterday. Or the day before. Belated birthday cards seem to have been invented for people like me, but even then how belated can I really send it? A week, two weeks, a month? It would be better to send an early one for next year sometimes instead.

I do feel bad and guilty at times and even reminders can get forgotten when my child is screaming for dinner and the other requires an urgent nappy change. Please continue to give me grace and patience.

And please most of all extend that grace and patience to my children. They both have autism. One of the biggest ways that affects them is in social interaction. There are some major family and life events that it is just not possible or practical to bring them to. Babysitters are very rare for special needs parents and even if I can manage to arrange one there are certain times of day like bedtime and dinner time when my son is just totally unable to accept a change of person. So if your event clashes with dinner time or bedtime for my kids I have to put them first. One days change of routine and change of person can affect both my children for months. To leave the house, even without the children, takes military planning and co-ordination and my mobile phone HAS to be on. And that is why I may seem distant or quiet.

And if I do have the children I am even more pre-occupied. To have come to church today or to your house to visit or even to an everyday event like softplay has taken a lot of explaining to and talking to my children. I have probably had to google the place and show my children pictures or I have taken photos in the past. My son will have screamed most, if not all, of the way to the event as we have taken him somewhere other than school. I will have had to remind him where we are going at least ten times. Every stop, be that traffic lights or junctions or slow moving traffic, will have caused further screaming. I will have wondered if we will even make it at least half a dozen times. The event may be close to home but we will still all arrive exhausted. And it will always be touch and go if my son will come in. The lights could be too bright, the music too loud, the place unfamiliar and the people too stressful. But most of all the doors could be far too entertaining, especially if they happen to be automatic!

If you have a buffet my son will not understand that social convention means people usually access this after some level of social interaction. We might see people first, he sees food. My daughter sees stress. And even though it might appear I have eyes in the back of my head, I don’t. So watching two unpredicatable and stressed children is very exhausting.

If I visitted your house this year and my son caused chaos I am sorry. He used to be fixated with water and would seek out anywhere he could find this. Unfortunataley when you are only 1 metre high the best place to locate this is in fact the toilet! Though this still interests him he is currently fixated with beds and will think nothing of climbing on and under the duvet of every bed in your house. Whilst his twin sister is glued to me and knotting herself around my legs it is hard to truly keep up with her twin brother. I wasn’t being paranoid when I asked if you could lock your doors. It is common for him to escape. And that wasn’t lightening we saw that day. It was Isaac switching lights on and off continually. And yes he did help himself to food in your house without so much as asking. Sorry.

I need you to know dear friends and family that this is autism. This is my life. I have tried discipline. I have tried training. We are still teaching him. But this is very real sensory and ritual behaviour. This is autism. And this is why when you invite us round I often say ‘no thank you.’. It is because it is stressful; for you, for me and for my children. It isn’t because I don’t care. It is just easier to stay at home.

I am not being anti-social. I am looking to my children’s interests. Weddings, family get together, christenings, parties, family meals and church events of any kind are almost impossible and extremely stressful for me. If I bring the children it is chaos. Or I become invisible all night watching my son playing at the automatic doors or running up and down a ramp or flapping at the lift going up and down all night, while my daughter is hysterically crying for mum. If I come alone I know I am going home to screaming children and one thousand questions from my daughter as to why everything was done differently tonight. Or to a sick child from head banging.

So thank you for understanding. Thank you for inviting me to things even when it feels like I never say yes. And please keep inviting us. We might be having a ‘good day’ and be able to come for a little while. We might have enough time to prepare the children or get that rare sitter. Forgive me if I look like I have come in fancy dress as a cleaner. I probably cleaned something you don’t want to know about just prior to leaving home. Or had a handful of baked beans rubbed into my back that I wasn’t aware of. And forgive me if I leave early. I am exhausted physically and mentally. I eat, sleep and breathe my children. So naturally it is my only real conversation topic too. You see they are my full time job, my hobby, my family, my everything. I don’t get out much. Sorry if I bore you talking about professionals, and hospitals and things you take for granted like eye contact.

So thank you for sharing your events on social media,by email and in your blogs. I want to see your wedding pictures, your birthday party snaps and your summer holidays. It is like being there but without all the stress. I know you want us there and I truly appreciate that. But sometimes life doesn’t go as you expect.

I have two disabled children. I have two beautiful children. I have two amazing children.

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and they are my priority.

Thank you for appreciating that and loving and supporting us. It might be better if I say Happy Birthday, Congratulations, and Happy New Year now in case I miss your events in future. Don’t lose contact. I love texts and messages and even the odd card in the post. I am still here, even if you don’t see me as much as you would like.

And I still care and love you all.

With love,

Miriam.

A label won’t define them

Are you one of those shoppers who reads the labels before buying a product? Do you want to know how much salt it contains, whether it has any artificial products in it or even just how long a use by date it has? Or do you just recognise familiar brand labels and put them in your trolley because you know your kids will eat it? Whatever you do the label serves a purpose but without opening the product you still won’t know what it is actually like.

Autism is the same.

‘Autism’ is a label that was given officially to my son on 31st July 2012. It is a label he will have for life. Some people see his label but don’t see him. Others use the label to get a better understanding of his behaviours and tailor his education to suit his needs. Some see his label as just an excuse for anti social behaviour. Still others are frightened by his label. Many do not understand his label and a few see past his label and get to know Isaac. And even fewer are interested enough to read the small print and see the other labels he has such as global developmental delay, severe learning difficulties and neurofibromatosis type 1. 

So I thought it would be good to explain his label (his diagnosis) a little more:

Autism is a complex lifelong condition that affects how a person sees and makes sense of the world. It is a spectrum condition meaning some people are affected mildly and others more severely. There are four main areas it affects including:

social communication (Isaac can not talk or point and struggles to make his needs known. He does not use social gestures like waving or pointing or blowing kisses. He is unaware of others around him much of the time and can not read facial expressions such as knowing when someone is happy or sad. He can hit or bite as he does not know this is not a socially acceptable means of communicating)

social interaction (Isaac does not give eye contact and ignores people when they are talking to him. He has difficulty following simple instructions. If he wants to sit on a seat and someone is already on it he will sit on top of them as if they were not there. He only plays on his own. He does not understand other childrens games. He will break up a train set unaware his sister is playing with it.)

social imagination (Isaac is unable to imagine dangers exist such as moving cars on a road, or falling down a hole. He can not cope with changes to his routine because he can not ‘imagine’ doing anything differently. He can not cope with new places as he has no concept of the wider world around him. New toys stay in the boxes as he can not imagine they could be taken out. He can not imagine what another person might be thinking so can act very inappropriately. He is unable to work out what other children are playing or that a train set toy is representative of a real life train.) 

sensory issues (Isaac processes sensory information differently to others. His play is all on a sensory level and he finds great delight in water play or exploring feathers. He likes to scan things across his eye line. He hates socks and shoes on. He chews and bites everything. He prefers to have no clothes on. He likes deep pressure. He loves the detail and repetitive patterns on things. He adores straight lines.)

 

But this is only how those areas affect Isaac. Everyone with autism is so unique and the areas of difficulty can affect people in all different ways. It is very likely Isaac’s twin sister will also be diagnosed as having autism later this year. But, she can talk fluently, gives good eye contact, is socially aware and academically thriving. Yet they could both have the same label.

Because a label can not define a person. 

You have to open a tin of beans and taste them to know what they are really like. For all a washing powder label says it gets “rid of every stain known” until you try it on your childs ground in blackcurrant juice stains you will never know how good it is.

Please don’t be frightened of my childrens labels or diagnosis. And please never let it define them. They are funny, boisterous, happy, loving children who are unique in every way. Autism helps us understand them but it will never define them.

Here they are playing together with a toy kitchen. Communicating, interacting, using imagination and experiencing all sorts of sensory feedback like noise and colours and movement. Because no label can define them!

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