The day I broke 

No one is coming to our rescue.

Our social worker is a chocolate teapot who’s broken record repertoire of ‘no funding’and ‘nothing they can do’ is wearing embarrassingly thin.
CAMHS are merely a suicide hotline for young people, funding only the very extreme cases that can no longer continue being ignored and are pushed to make a permanent solution to what could be a temporary problem with the right support. 

Help. Such an empty word. Full of pity. Such a shame. 

Being a parent of a child with special needs means to continually rip your heart open and remain functional. To continue to breathe with minimal oxygen. To struggle beyond the realms of coping. To walk through firey battles and live in a perpetual state of weariness. 

No one is coming to rescue us.

You scream from a burning building, frightened for your sanity and for those little people you’ve made along with your unicorn child. Unique in their needs. So very different from the Rose-tinted parenting life you’d imagined. 

Put your own oxygen mask first, they say. But what of the children? How can you bear to watch their panicked eyes when they silently scream for air? No. You take yours off and give it to them because THEY ARE the very air you breathe. You learn to live with the snatches of air while they sleep. And you never dare to sleep because the dreams you have are the best you’ll ever have compared to living. 

Help us.

You struggle for long days, weeks, months. Years go by. You finally dig deep into your pride-filled pockets and pull them inside out. 

Help us. Please. 

You close your burning eyes and listen for sirens. You wait. Days. Weeks. Months go by. How long do you wait for someone, something to save you? Save your child from suffering? Save your family unit from combustion? How long would you wait? 

Wait for tests. 
Wait for a diagnosis.

Wait for funding.
Wait for eligibility.
Wait for maturity.
Wait in line.
Wait, cradling your children.
Wait to have that shower.
Wait in for telephone appointments.
Wait. Wait. Wait. 
WAIT. 

Until that day you realise. No one is coming. No one. Nothing is out there. Nothing in the void will save you. 

So. You fall. You don’t wait for a safety net. You fall. You breathe peacefully. You fall. Endlessly. Because on that day you broke, you finally understood that the quest for help would come from inside of you. It was there all along. 

A diamond is made from from high temperatures, pressures and depths. 

We are diamonds. We are precious. Our children need us like the air they breathe. We will adapt.

 We will save ourselves. 

Midnight thoughts

I love to watch the dark.

The twinkling horizon of electricity from distant towns. The occasional luminiferous streetlight casting a spotlight on pavements. The dark landscape of clouds framing the silhouettes of trees. The distant hum of night freight. The stillness. The vacant roads. So quiet. Like a prelude or a prequel to the day, resetting the parameters of time and it’s restrictive boundaries. A world that has endless possibilities and freedoms. A different world. 
Midnight ramblings are the best kind. Goodnight. 

What women REALLY want for Valentine’s Day ❤️

So. Valentine’s Day is coming up and we are reminded by consumerism that love equals stuff. Stuff bought for each other. Love is measured in currency. 

But is it? Perhaps. But there are other ways we show our love. 

The Five Love Languages is a book by Gary Chapman that describes the five ways people express their love that Chapman calls “love languages”:

  • gift giving
  • quality time
  • words of affirmation
  • acts of service 
  • physical touch

He goes on to suggests that in order to find out another person’s love language, you need to watch how they express love to others and listen to what they complain about most because people tend to express love in the way prefer to receive love.

But can love be also measured by social media likes?  By sweeping Facebook status declarations?

 “My husband/lover/partner bought me these massive bunch of flowers and this thing I always wanted and we are going to this amazing place to eat/fuck/pray and here is a picture of him doing these things and isn’t our life just PERFECT. ”
*delete/block/throw up*

We are conflicted. We want the grand gestures because they make us feel special. Cherished. Chosen. Loved. We compare ourselves to other successful women. We want the magic. The sparkle. The fireworks. 

But we don’t want generic. We don’t want contrived. We want special. Special is not buying us blah cliche stuff because you think that’s what we want. We want you to THINK. What do we like to do with you? What shops do we visit most? (Supermarkets don’t count!) 

Things we DONT want (unless we say so)

  • Perfume. Don’t go into any department stores and ask the assistant what ‘is the most popular perfume’ and then get them to wrap it. It’s BALLACKS. If you think perfume is a good gift, pick 3 bottles. Sniff each one. Pick your favourite. We want to smell nice and it helps if you like the smell too. Extra points for wrapping gift yourself. We can tell. Just shower when you get home. If we can smell another scent on you then you’re rumbled. 
  • A dozen red roses/flowers. They equal guilt. Guilt blossoms. You’ve done something wrong that you know/don’t know. Flowers. NOPE. The grand gesture is appreciated more. Are they her FAVOURITE flowers? Then she’ll love them. Because you put thought into them. (Do you see a pattern emerging here?)
  • Jewellery. A necklace or earrings when she doesn’t usually wear them. Is she a fan of brooches? Then yes. Buy her one. Get one made especially for her. Thought buys you what money cannot. 
  • Tickets to Paris (actually, yes we totally want that) It tells us you want to spend time with us. Money can’t buy that. Spending time with her. Or not spending time with her if that is preference. We all need a break. 
  • Lingerie. No. Just. No. This is a present for you. Plus you get the sizes wrong. Too small and she will feel like shit. Too big and she will think she’s fat. Just. Don’t. Ok?
  • Chocolates. She can buy her own, thank you. Unless they are a bucket full of her favourite type and then she will gracefully accept under duress. 
  • Stuffed animals. Because we are not 3. Unless we collect them. Because we didn’t get them when we were 3. HEY YOU MARRIED US. 
  • Stuff for cleaning/house presents. Why do we like to clean so much? We stress clean. Because our family makes us stressed. By making it messy. 

If she says no presents, she means NO GENERIC PRESENTS. It really means yes presents. Buy us a little something that’s says hey babe, I thought of you today and I got you this. Is it Valentine’s Day? I never noticed. I love you everyday. Well, not EVERYDAY but look I bought you those favourite biscuits you always look out for. I noticed you. 
Ultimately, Valentine’s Day SHOULD be celebrated with anyone/everyone you love and love knows no boundaries. It’s a day to remind ourselves why we love each other. Just don’t go generic or mainstream. 

Go with what your heart tells you to do. ❤️

The A Word

My child is Autistic. 
She has autism.

BOMBSHELL. 

You know those things she does and finds easy/difficult? That’s her autism. Or is it her personality? 

She is so friendly. She speaks to everyone. She is confident in unusual situations and reserved in usual ones. Is this her personality or her autism?

Does her autism define her? Yes. She is moderately to severely autistic. She is not ‘a little bit autistic’ she is a lot. Did it shape her personality or accentuate it? Who knows. Chicken or egg. 

There are so many people with different opinions of autism, how to approach the subject, the correct terms to use (she IS autistic or is it she HAS autism? 🤔)

Let’s get something straight here.

  1. I don’t mind if you say we should take her to Vegas to count cards (she’s not great at maths) 
  2. I don’t mind if you say you know a neighbours daughters friend is autistic and he is so literate (my daughter HATES to read)
  3. I don’t mind if you say she will grow out of it ( she has in fact grown INTO it as the years went by)
  4. I don’t mind if you don’t know what to say at all. (It’s ok. Let’s hug.) 
  5. I don’t mind if you’re desperately sad for us. (It is not what you hope for as a diagnosis for your child)
  6. I don’t mind if you send me links to various articles about autism (knowledge is power and I appreciate your research)

I don’t mind what you’ve heard about autism or what your assumptions are here BUT LETS TALK ABOUT IT. This opens the door for a much needed conversation and debate about the experiences and expectations you hold versus reality. Autistic people are all so very different. Let me tell you about MY autistic child. 

She is high functioning. This means she can speak, dress and appear ‘normal’. To a certain degree. Until that inevitable point where you think 🤔and now you’re getting the gist. She will hug police officers in the street. She will scream at any loud noises. She will ask you why your nose is so big/hairy/old. It’s awkward if you don’t know her. She is not socially acceptable. She cannot successfully read your body language. But she is bright and funny. Sassy and cool. Thoughtful and kind. Mostly. When things are too much she is none of these things. She is her autism and it impairs her relationships and how she is perceived. It debilitates and exhausts her and her primary carers. But now we have this label we can access the support she and we all so greatly need and deserve for going without for too long. 

    Don’t whisper and point. Come and talk to us. We don’t bite! (That’s an inside joke because she totally does) ok so I don’t bite and I don’t let her bite just ANYONE. 

    Don’t avoid us because that hurts like hell. Understand that usual invitations to social gatherings may not be ideal for us but still invite us. We do not plan too far ahead. She lives in the moment. Planning ahead makes her bitey. But we’ve got this. If you don’t hear from us for a while, understand that we’ve NOT got this. Send food parcels. DVDs. Hugs. Wine. It’s a minefield. Your support means more to us that you realise. 

    Autism is not a dirty word. 

    Let’s talk about it. 

    No to shared Christmas. 

    This may seem controversial but in the ten years since the kids biological dad walked away from his wife, a five year old and an unborn baby to be with another woman and her child, I have never shared the kids on Christmas Day with him. He’s asked. The first year. The answer I gave him was this: 

    Christmas is one of the special days of the year. One for joy and happiness. One to share opening presents with your loved ones. I work bloody hard all year. I turn up for parents evening. I listen to their heartaches when you don’t call. I support them when they wish you would see them more often. I even make excuses for you by telling them you are just really busy. I read bedtime stories and hug them when they fall over. I take them to school and pick them up. Wash clothes and feed them. I know their favourite colours/stories/tv shows. Memorised character names of Thomas/Thunderbirds/Whatever new show they adore. I’ve earned Christmas Day with my kids. 

    When you move over 150 miles away from your children to be with someone else and make another blended family of your own, when you choose these people over your children, when you prioritise your time with others but never your children, when you spend zero time calling/texting/visiting your children during the other mundane months of the year; you do not/will not/never ever ever will spend another Christmas Day with them either. 

    He has them after Christmas Day. They get a second Christmas Day with him and his family. There you go. It’s not all as bad as it sounds. They get 2 Christmas days. It’s just the actual one is spent with the parent who would never walk away, no matter what. Who would drive 3 hours to see them for 3 minutes.

    The one who had kids for life, not just for Christmas. 

    A poem of thoughts.

    Underwater world

    Living on the seas edge

    Listening to the crash of waves

    The murmur of moans

    Where are you?

    Sinking like a suitcase full of lead

    Locked underwater

    Cold and dark

    Longing for the change in temperature, the warm tides

    Floating and sinking in equal measures 

    The sea bed is uncomfortable and full of darker holes to swallow me up and burp me out.

    Close your eyes

    Truest voices can still be heard but they’re muffled. 

    The pounding of waves. 

    Sing to me the waters splash.

    A letter to my explosive child. 

    I love you. I’m here for you.

    A lot of things bother you. I hope one day you can process them in a safe way but you just can’t at the moment.

    I love you. I’m here for you. 

    You can be intimidating and explosive with your words and actions when you’re frustrated. I know your emotions overwhelm you. 

    I love you. I’m here for you.

    School is a anxiety overload for you with various demands amid expectations. Tests, reading, writing, comparisons to your peers boils your being. 

    I love you. I’m here for you.

    You want so much to be accepted and liked. The world confuses you. You’re like a cat stuck up a tree that desperately wants to come down but you lash out at anyone who tries to help you. It’s frightening up there. 

    I love you. I’m here for you.

    You sabotage all your relationships with friends and family because you think you’re not worthy of love. You constantly challenge their devotion. That must be so exhausting so you so you provoke them to fulfil your prophecy of giving up and leaving.  I hope one day you realise you’re cherished and loved for who you are and not for who you think they want you to be. 

    Some days you’re quite unlikeable. But I always love you and I’m here for you. I hope one day you’ll love you too.