Just don’t ask my neighbours!

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!

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

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.

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.

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!

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:

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.

It takes a man

Manliness : the traditional male quality of being brave and strong. Synonyms include: virility, vigour, strength, roughness, muscularity, control, power (Google definition)

Most men have the physical ability to father children. Not all men make good fathers. The exact same can also be said of woman.

I am very aware that the majority of my readers are of the female variety. I am in no way putting woman down or saying that any of the following things can only be carried out by the male species. In fact it is the exact opposite.

What I do want to do though is particularly honour those men who are bucking the trend by supporting, nurturing, caring and standing by not only the mothers of their children but also their very unique, and at times very challenging, children. Those very fathers who have perhaps had to give up jobs, lost careers, livelihoods, friends, and positions, to be there full-time for their child or children who may never live independently, or be employed, or get married. It takes courage, bravery, and strength to father a child who may never call you daddy, who you may never teach to play sport or see graduate from university. This is for all those men and for all those woman having to find the courage to be a man too.

Because it takes a man to be patient with a child who has yet to learn his own name.

It takes a man to still dress your child and carry out intimate care on your son or daughter beyond the age when a father or mother would be expected to.

It takes a man to teach your child right from wrong when their body is many years older than their mind.

It takes a man to try to teach your child to walk safely when they are pulling at your clothes and screaming at you.

It takes a man to wipe your child’s tears away and hug them after cleaning up their bodily waste from walls, bedding, toys and their own body. It takes a man to refrain from shouting when anger bubbles inside you.

It takes a man to allow professionals into your home to criticise your parenting and question your ability and not physically remove them from your home.

It takes a man to sit at the level of your child and gently support them to do tasks a child many years younger is able to do without hesitation. It takes a man to push his own personal choices aside and allow the child to create how they want, knowing they will never win any competitions or awards for their endeavours.

It takes a man to take pride in a simple scribble when other men are boasting of their offsprings masterpieces.

It takes a man to keep pushing a grown child in a swing designated for babies and watch other people stare.

It takes a man to be willing to push your beloved child in a wheelchair and not be ashamed.

It takes a man to stay at your child’s bedside while they fit, or scream or have needles attached to them.

It takes a man to be willing to fight for your child because they have no ability to do it themselves.

It takes a man to attend meetings dominated by females who are not always willing to listen.

It takes a man to be willing to sit up with your child right through the night, watch the same ten seconds of whatever it may be on repeat over and over again, and make the same meals day in day out.

It takes a man to be willing to clean, wash, iron and cook to allow the mum a break.

It takes a man to continually take your child to hospital appointment after hospital appointment and still have no answers.

Raising any child takes courage. Raising a disabled child takes extra courage. It takes bravely, strength, control, dignity, patience, character, and vigour. It takes a man or a woman of valour and power.

It doesn’t just take a man. It makes a man too.

Pass it along…and leave it to mum

What qualifications did I need to become a mum? Very little, if any.

Teachers study for years, as do speech therapists, occupational therapists, physiotherapists, social workers and psychologists.

I am just a mum. I don’t mean that in any way to put down what I do. But my role is very different to the specialists named above. My job is to love, nurture, support, encourage and guide my children to become the best that they can be in life.

For my children with additional support needs that means I will be changing nappies much longer than average, still teaching basic sounds and numbers long after others, and spending that bit longer supporting my children (possibly way into adulthood). That I can, and am happy, to do. I will happily spend my evenings singing nursery rhymes, playing board games and doing homework. I have no issue with cooking, cleaning, washing and other seemingly mundane house hold chores.That is what being a parent entails.

But increasingly I feel I am being asked to be way more than a parent to my children.

As financial pressures increase upon the services my children depend upon to support them, there is a current trend of ‘pass it along’. Basically for so many professionals their time with my child is very restricted. Their roles are goal oriented where after a few sessions it is expected they can record progress and show they are making a difference. Then they show me how to do what they have started and move on.

So for example, the speech therapist may visit and introduce some basic visuals. He or she may check my son or daughter appears to understand, then proceed to give me a quick demonstration and hey presto…they vanish off the scene leaving me to do their job! They have little choice really. They have referrals coming out their ears and fewer resources at their disposal. So ‘pass it along and leave it to mum’ is the only way for them to survive.

So now I am a parent and suddenly a speech therapist too. That adds a bit of pressure.

My daughter was finally seen by a physiotherapist this week. She was lovely and very thorough. We now have a much clearer understanding of some of my daughter’s physical difficulties. More referrals will now be made (the hospitals must think we have a season ticket!). When I asked specifically where we go from here I was told that hopefully someone can show the school some exercises and we will also be sent leaflets full of things to do at home too. No time to come and teach me. It is expected I will be able to work it out myself, without all their years of specialist training. No time, no resources, not enough staff. Pass it on; discharge.

So now I am a parent, a speech therapist and now a physiotherapist too? I can sense the washing pile mounting up more and more!

The occupational therapist came this week too. Her case load is more than some schools have on their entire role! There was insufficient time (as usual) to complete the paperwork she wanted to do that day so a pile was left for me to complete as soon as possible. And of course she left us with more practical ideas to support the children. No time to teach but ‘the sheets will explain’…where have I heard that before?

Now I am a parent, a speech therapist, a physiotherapist, and an occupational therapist!

Do I really need to tell you what sort of thing the psychologist meeting was about? I think you get the picture!

Of course I could easily chose just to default and be ‘simply’ mum. But the reason my children were referred and accepted by all these professionals is because there was a need for their services. Their input could apparently ‘add value’ to my children’s lives. They could apparently help us.

So while I am left with not only the raw emotions of finding out my child has yet more physical issues and needs, and passed to yet more health professionals and departments, I am also forced to take on roles I am neither qualified or trained to do.

And when it all unravels and my child still can’t talk or use visuals in years to come, or my daughter is still unable to carry out certain physical tasks or is still crippled by anxiety who will accept responsibility?

They will say the have done their best. They did exactly what the system expected them to do. They passed it along…and left it with mum.

Meanwhile poor mum has little time left just to be a mum. She is far too busy trying to be the professional needed for her children.

It’s just she has no-one left to pass it all along to.