The lone warrior: the parent of a child with complex needs.

Being a parent of children with complex needs can be excruciatingly isolating.

Before, you’d have the time and energy to socialise with friends and family. Meeting new people, working 9-5, trickling a steady stream of vitality into connections.

A child with complex needs absorbs every ounce of your being. Your time and energy is thrown into a vortex that sees no beginning nor end. Minutes become days. Days become months. Years go by and you wonder when you became so heavily invested in this insular existence that you can barely remember your life before this duty was thrust upon you.

You evolve over time, bent into an inconceivable position, like an aerial tuning in and searching for that crucial clearer picture. To most it would look insanely impossible. Most question it’s practicality and openly wonder how you do it.

You do it because the alternative options have all been exhausted and proved devastating to your family unit. All traditional parenting strategies are thrown out of the window because they do not apply.

Once your lens is thus adjusted, it makes it utterly implausible to view others without this sense of logic. You find it difficult to relate to the seemingly senseless world outside your family unit.

Frivolous activities that you may once enjoyed appear benign, the importance of your visual exterior an unnecessary action. Your time is so heavily invested into your child that all your stamina is spent and you learn to live in energy-debt.

Your sense of self becomes disjointed and any free time is spent staring into space marvelling at the depth of silence around you. These moments bring much needed clarity and your already heightened senses fill themselves with a plethora of delights, unseemly inconspicuous to the vast majority. They offer much needed comfort and sustenance on your relentless journey.

But you crave connections. We are all hard-wired for connection. But we are too consumed inside our quest to stop. It’s achingly sad.

The lone warrior must continue their journey into the unknown, comforted by the bittersweet memories of yesteryear. Surviving on what we scavenge. Invisible to life’s normality and utterly devoted to their lonely plight.

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Autism: when your kid doesn’t get an early diagnosis.

Here's how the journey starts.

You have a baby. You look at this healthy kid and dream what their life may be. A doctor? A lawyer? You set the bar for 'happy' and you adjust to parenting life.

The baby doesn't settle. Doesn't sleep. You hear advice from the correct professional channels and read many books. (The ones you read when you were pregnant)

You meet other new parents. They've other issues that your kid has cracked. You offer advice. They listen but take no notice. You do the same.

Weaning. Your kid eats stuff but rarely food items. You put it down to teething. You've an inquisitive child and you vacuum 3 times a day or else your kid does with their mouths.

They start to walk. Oh hell. Everything needs to be put on a higher shelf.

They start to climb like mountain goats. Everything gets moved higher still.

They cry at familiar people. They hug strangers. You're worried but say your child is naturally friendly and you encourage every encounter. You really want your family and friends to like your kid but your kid doesn't adhere to this strategy.

They start nursery. They play with everything and everyone. They get into scrapes. The nursery staff take you to one side to tell you the hilarious thing they did today. Or the inappropriate thing. You're mortified. You chalk it down to experience.

They start school. It's the same as nursery except they have a uniform they hate to wear. It's scratchy. You cut many labels out and keep receipts of items that they just won't even try on. They insist on wearing the same pair of shoes even though they are so old the soles flap. Going shoe shopping is such an ordeal, you order online and hope for the best. In fact, you order everything online because the stares you get when your child has a 'tantrum' are not worth the sale prices.

They get invited to parties. They get invited to friends houses. This declines as the years progress. Sure, you'll have any kid over as long as they offer you a break and play with your kid for an hour. Except they don't. They don't share. They ignore the friend. The friend thanks you for having them but your kid doesn't want to invite them again. The kid doesn't reciprocate.

They invite another kid. The same happens. You stop inviting kids. Kids stop inviting them to parties.

Terrible twos turn into terrible threes. Awful fours, the fives, sixes etc. With each year you hope for a breakthrough. It doesn't come.

Each parent teacher meeting is full of woe. This little fishy you created just won't swim at the same speed or direction as the other little fishes. They won't listen to the teacher. They cannot hit their teaching targets. They fall behind more and more with academic year. Teachers want to know what's happening at home. Ah, it must be the home life. That day you left them with that childminder and they cried for the entire day? That's the abandonment issue. Did you breastfeed? No? That's the attachment issue. Behaviour at home is worse so it's your fault. You despair.

You meet many medical professionals who explain your kids behaviour as poor parenting. Oh, they may not openly suggest this but they'll book you onto parenting courses, ones that explain all about the countless books you read up on to see if you can find a theory that fits.

You try reward charts/behaviour management. They work for 3 days. The chart gets ripped. You despair.

You have lots of friends but you never get to see them. Or when they call, you avoid the call because how can you tell them that you want to close your eyes and not wake up.

You're house becomes a sanctuary and a prison. You watch many dvds over and over again because they seem to settle them. You tell yourself you're a bad parent and look at Pinterest for inspiration. The get clay for art therapy. That's therapeutic isn't it. You envisage your child creating an abstract sculpture or even an actual thing that resembles something. They like the feel of it so much, they become the sculpture and wear all the clay. Nothing tangible is made. You despair.

Your health declines. Your energy levels are so low from this marathon parenting journey you climb upstairs on your hands and knees. Take me time for a shower? You kid will only shower with you. The lines blur from parent to carer. You need a break but your kid cannot bear to leave your side and no one volunteers. And that's ok because your tiger needs a tiger handler and you can't know what unpredictable behaviour would ensue.

Doctors tell you they're anxious and to make them a worry box so they can write all the little things that set them into meltdown on a tiny piece of paper to post. Except your kid doesn't like writing, least of all in meltdown mode. The box gets trashed. As does their room and your favourite vase. You despair.

You read about autism. They don't tick every box but they tick enough to provoke suspicion. You meet doctors/ CAMHS (after waiting 6 months) and they say no, it's your poor parenting skills. You despair.

You're left in the wilderness for years. Unless your kid displays high levels of autism in every category then your kid doesn't get help. They get labeled a troubled child. A manipulative child. An aggressive child. A defiant child. You see, we label everything. Labels tell us what's inside the box. For people who hate labels I say this: would you buy a tin without a label? Would you buy a mystery box without a label? Labels are important. The Autism label is important. It tells my child that what they feel inside is normal. It reminds me that they are different and different is a good thing. It gives us all instructions and insight on how to understand autism and what that means to this individual child. Not every kid is Rainman. Autism may be just one ingredient in a plethora of interesting additions to their personality. And they do have a personality. Every autistic child is different because it doesn't define them, it enhances them.

You finally go private after many years on the NHS hamster wheel. They confirm autism. You cry. Tears of joy at the relief. They believe you. They see it too.
You cry for the years you misunderstood your kid. You cry for the many negative interactions with friends, families and peers. You cry for what the future holds. You cry for the doctor they may have been. Or the lawyer.

Or just happy. You just want them to be happy.

You fight for what your child has missed. Missed therapeutic sessions. Missed interactions with likeminded peers. Missed pleasures. Your lens changes. You ignore the picture perfect social media families and search for kindred spirits. You hope for happiness. You're weary but you'll never give up even though you come so close every single day.

You're a diamond parent. Youre formed under immense pressure. You're a gem.

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. 

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. 

    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.