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!

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When the carer needs care

Wake up, eat, go out, come back, eat, play, sleep. Simple really.

And then mum went and fell down the stairs.

Kiss it better, put a plaster on it, don’t think about it and it will go away. Simple really.

Stop! Yes, you read that right: mum went and fell down the stairs. This isn’t a kiss it better situation. or a simple plaster affair. This is serious. This involved accident and emergency departments, a splint, bruising, pain killers and crutches. But it could have been so much more serious. And for that I am eternally thankful, despite the pain.

So what happens when the carer needs care?

By defination of a carer you are supporting and looking after and seeing to the constant needs of another. You are the lifeline, the advocate, the stronger one. The carer sacrificially puts the needs of the other person before their needs daily, whether this is in a paid capacity or not. And for many, like me, this is a 24 hour a day, 7 days a week job. There isn’t sick pay, or holidays, or even lunch breaks. Training is in your ‘spare’ time and has to be juggled around appointments and therapies and the care needs of the person you support. Parent carers like myself work behind closed doors, silently doing all that needs to be done to ensure the welfare of your disabled child or children is put first. We carry out therapies because there are not enough hours of speech therapy or physio or nursing care available. We administer medication as efficiantly as any nurse and our patients date of birth, allergies and personal information rolls off our tongues as easily as our own does. We fill in forms and specialise in the day to day care of conditions we have had no previous education in. We are nurses, therapists, entertainers, interpreters, cleaners, cooks and drivers on a daily basis.

But every carer is human. Accidents happen. We have emotions and feelings and sometimes, actually more often than we realise or want to admit, carers need care too.

So for me that has meant a period of rest and reflection. And allowing others to love and support me. And that is something I have found hard. Not only because I am used to being the strong one but because my beautiful children have found it very challenging too. It may sound a cliche but seriously my heart was often in more pain than my pysical body at times.

While I dealth with this:

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my boy reacted like this:

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Because he has autism and can’t cope with change. Because he is at the stage of requesting things by taking mum’s hand and leading her to what he wants and he can’t transfer that skill to anyone else. Because he has global developmental delay and can’t understand that mum is injured. Because he can not tell us what he wants or what is going on as he has no speech. Because he is just a child after all. And he gets the care, not mum. It’s hard to realise that person who does your washing and ironing, keeps your house clean, puts food on the table for you, changes your nappy and works the television is, after all, just like you and has feelings and pain and needs help at times. Gosh, many a teenager still struggles with that concept so no wonder a four year old can’t grasp it overnight!

So when he went to his room we found he had smeared. All over walls, bedding, toys, himself..well everywhere really. The mess, the smell and urgency to get him away before anything was ingested would be overbearing for anyone, but when you become soul carer to two disabled children and an injured wife, well it must have felt like the whole world was against him. In my eyes my husband is a hero. My admiration for a man who can face all that and still smile has just got so much stronger. But you would never known he had dealt with that behind closed doors. Because that doesn’t make news. It is just daily life. It is love in action.

And when we took him to a hospital appointment Isaac screamed. That ear piercing, get me out of here, all consuming scream. Continually. Because he was in his disability buggy, mum was on crutches and his sister was trailing behind. Because it wasn’t possible for one of us to supervise his urge to walk up and down in straight lines gazing at the ceiling lights. Because he was at a hospital and clinic he had never attended before and he hates change. Because we had picked him up early from school in order to go. Well, in reality for any number of reasons really. But the fact was he screamed. Continually. Even while we were trying to speak with the paediatrician. Hey, we are carers and parents and we are human too. It hurt our ears as much as it did everyone else. We needed headache relief like everyone else.

Do you ever stop and think that someone you know could be going through something like this behind closed doors?

He does sleep (albiet with the help of a supplement), and most weeks are not this bad. Thankfully.

But when I started blogging I said it would be an honest account. So this is life.

And then he does this:

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He used a point for the first time EVER and actually tapped the ipad in the right place for the first time. His smile and the achievement and the love of his twin sister sharing the moment. Well, that is worth the screaming hospital appointments, and the smearing and the pain in my knee. That is why we care.

Injured knees mend, headaches from screaming ease, poo can be cleaned. Seeing a child reach a milestone is worth it. Hearing that first word makes it worth it. Knowing your child is breathing, eating and growing makes it worth it. It really is incredible to be a full time carer.

But the emotions and the intensity and the fact accidents happen and carers are human mean that no matter how big a smile a carer has, never forget that carers need care too. And that isn’t just because they are injured.

You never really know what is going on behind closed doors. Let someone know you care please. Hug, smile, do something nice for them, and don’t judge. It could be you they care for one day after all. Or you could find yourself being a carer.

Today has been a good day. There has been no extra cleaning, or extra high pitched screaming. No pain killers needed and the knee is improving. We all woke up, ate, went out, came back, played and went to sleep. Simple really.

But the week the carer needed care taught me that we are all human. And it’s ok to need help sometimes.