true tales from the gates of the underworld


ADOS
October 20, 2017, 11:27 am
Filed under: Life, ND is OK, Uncategorized | Tags: , , , , , , ,

In one week, we will face the day we have been waiting for since the day 4 years ago when I went to see our Health Visitor, desperate because Squidge just wouldn’t sleep. The wait intensified when we were referred, on his Reception teacher’s request, for an ASC assessment. 

Over the years, there have been different stages of waiting; at first it’s nervous anticipation. Once your hopes have been crushed some 300 times you’ve come home to no post from the assessment team, you learn to temper your emotions a little. You push it to the back of your mind, you are in no man’s land. Every day when you return home you get a little reminder that you are still waiting, that nothing has changed. 

Once in a while someone asks you how the assessment process is going, and you resolve to phone the team, to beg for a cancellation (again), or for any information at all. You just want a little glimmer to feed your hopes. You wait by the phone for days, nervously. When the call finally comes, of course it brings no relief. 

You push it to the back of your mind again, repeating the cycle. One day, just when you have resigned yourself to the fact that it will probably never happen, you come home to a letter. A letter with a date. 

The fear begins to set in, along with the doubts. 

What if we got it all wrong? What if they just can not see what we see, live with every day and night? What if it’s all down to our parenting? 

The fears are much more centred around not getting a diagnosis and having to live without support and answers in limbo for another 2, 5, 10, 30 years. 

You would have thought that after such a long wait, this last bit would be easy, but it doesn’t feel like you know you are coming home. It feels like you should come home, like your long awaited comfortable safe space might be there, or it may have disappeared, been redecorated or put on its head while you were travelling. 

One more week.

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Please don’t tell me everything is fine
September 21, 2017, 9:36 pm
Filed under: Life, ND is OK | Tags: , , , ,

Back to school. I think most parents of neurodivergent children dread this time of transitions and new beginnings. The meetings, the meltdowns, the battle to be the voice for our children. 

School staff always think they are doing me a favour, when they tell me in a reassuring tone how great Squidge is at school. Good as gold. Always does what is asked of him. No problems at all. Everything is fine.

Everything is not fine.

My child comes out of school and he is pressurised like a shaken bottle of coke, and the lid is about to come off. There is biting and headbutting, screaming, vocal stimming and hitting. Clothes and shoes are discarded almost immediately, sometimes they start to come off before we even get to the car. He bit his brother so hard today that he broke the skin. I need to keep him safe, too.

Everything is not fine because he has been good as gold all day. No sensory breaks, always hiding behind the mask. Being himself is scary at school, he says. 

Everything is not fine because he is in a new classroom, where the windows are different to his last one, the tables stand in different places, the routines are not the same. His list that helped him gather himself to go home at the end of the day didn’t make it to his new teacher.

Everything is not fine because he doesn’t get to change his reading books when he wants to. Explaining that he can read library books does not help.

Everything is not fine because I can’t safely drop him off with the other children outside. There is nobody to watch the gate. 

Please don’t tell me everything is fine, you are not reassuring me. All it does is undermine my belief and hope that you can understand and support my child, because you can not see how hard he struggles. He probably is good as gold, but please, for once, could you say Tell me about the little things to look out for? What can we do to help? And maybe one day everything really will be fine.



I wish you could see him
July 13, 2017, 4:47 pm
Filed under: Life, ND is OK | Tags: , , , ,

I wish you could see him the way we do. The joy and hunger for life, but also the struggle, every day. Everything is bigger, louder, more. Open. Intense. His laughter, his sadness, his love, his fear.

The energy that comes off him is almost palpable. To you he may appear calm, but you can not see in his eyes how his brain never stops ticking. How his senses drink in his surroundings. How he fights to keep them out and pull them in, all at the same time.

There is always movement. Most of the time, his whole body is in flux. Running. Round and round, upside down, tip toes, heels. Eyes wide open, to know, to feel, where he is. When he closes his eyes, he forgets, he stumbles, falls. 

Look closely. He pushes, he pulls, he squeezes and crashes. The longer he sits, the bigger it gets. Hands, feet, head, body; first gently,  then less so. The mask slips a little more with every minute, unable to hide the energy beneath it. Tension.

Talking, humming, singing, vocalising. Repetition. Vibration. Buzzing. 

He wants to be everywhere, all at once. He wants to know everything. When you think he isn’t listening, he may be deeply in thought. When he doesn’t say hello or goodbye, he may be avoiding the shift from having you there, to you being gone. Sometimes, being everywhere at once is just too much, but he can’t stop. He can’t shut it out. Tears fall. Walls cave in.

At night, when dark descends and the world slumbers, he is still awake. Senses wide open, mind alert. Even when his body is exhausted, there is no end, no rest, no respite. Sleep does not come. He can’t. The world won’t let him.

There are spaces, safe. Tight, dark, almost no space at all. Safe. Even there, he always seeks for more. Always more.

Do you see, do you understand? 



An Open Letter to my Second-Born Child
May 1, 2016, 8:06 pm
Filed under: Life | Tags: , , ,

Dear Second-Born,

I am sorry.

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I am sorry for every time you have been overlooked – when you were born, each birthday, christmas, when you started school – by people because you are not my First-Born.
When instead of a visit and presence, you received a card in the post with money to buy yourself a present.
When instead of a visit and a card, your first day of school went unmentioned.
When your siblings received their ideal gifts at christmas, and yours was clearly an afterthought, as you grew out of that interest over 2 years ago. They would have known this, if they had come to see you, or asked about you.
I am sorry that they still don’t know how to spell your name.
I am sorry if you have ever noticed these things.
I am sorry if you have ever felt like you don’t matter. You matter.

I am sorry for every suggestion that we don’t care as much about you as we do about the First-Born, or the Youngest. I am sorry that people believe you suffer from Middle-Child syndrome, because they don’t understand Sensory Processing Disorder, or Autism, and all they see is some of your behaviour, separated from who you are.
I am sorry that people do not realise how awesome you really are because they would rather hold on to their stereotypes about middle-children.

I am sorry for every time I asked you to go back to your bed at night, because there is not enough room for 4 of us in our bed.
I am sorry for every time I couldn’t play Minecraft with you because I was dealing with the Youngest.
I am sorry that sometimes even I expect you to act like a neurotypical child, just because my patience is running thin.

I wish you knew how fiercely protective we feel of you.
I wish you knew that we love all three of you more than you will ever be able to comprehend, in your own different ways.
I hope you remember the times I have sat up with you at night, massaging your legs because your joints hurt, holding you because you had a bad dream, watching you breathe because you were ill.
I hope you remember that we always came to you when you called for us, the same as we always came for your siblings, because to us, you all matter the same.

I hope you may one day realise that the love we feel for your siblings does not subtract from the love we feel for you, but rather that it multiplies, as seeing you all together is just the best thing in the world.



Rainbow hair
May 13, 2015, 8:37 pm
Filed under: Life | Tags: , , , , , ,

At some point during my pregnancy with Rainbow, I stumbled across some photos of rainbow hair.
In the beginning I said I love it but would never do it. Then slowly I started to research, and a couple of months ago I worked up the courage to ask a very clever friend to help me dye my waist length, thick and dark brown hair into a rainbow.
She agreed, so I ordered the dye (Directions, in Plum, Midnight, turquoise, apple, daffodil, mandarin, pillarbox red and cerise), she would provide the bleach, and I the pizza.

4.5 hours later, the results surpassed anything I could have imagined.
My hair didn’t totally take to the bleach, it only went to a light brown/dark blonde, but the colours are bright and the coverage is totally even (there are a lot of reflections in the photo but it’s the best I’ve managed to get).

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Becoming a more peaceful parent
July 28, 2014, 9:51 pm
Filed under: Life | Tags: , , , , ,

Sometimes it’s hard to see past how much our children have grown, and remember that they are still young and fresh in the world.
Still tiny, in the grand scheme of things.
Still without much of the knowledge and understanding that we take for granted every day.
Easily overwhelmed, sometimes frustrated or scared by things that seem trivial to us.

I’m challenging myself to repeat to myself, every time I find myself getting annoyed with the whinging, clinging, clamor for help or things, night time wakings, mess…life – “You are only tiny. I’m your grownup, you love and trust me. Breathe, let go of the rising anger.”
I started this a few days ago, in the hope that we may have a fairly peaceful and fun 6 weeks this summer, despite both my husband and I having to work full time while the children are around.

This evening I managed to get through bedtime without shouting, and all three children were in their beds, asleep by 8pm – something that has not happened for a long time.
I had to remind myself that they were not trying to annoy me by asking for drinks, thinner blankets, less light in their room then more light. Stories, toys, trips to the toilet.

Now, I can enjoy some guilt free peaceful silence.

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They told me
February 15, 2014, 1:10 pm
Filed under: birth, Life | Tags: , , , ,

They told me… 
…I couldn’t
…I wasn’t allowed
…they would do
…they don’t do

“They” “told” me…
One syllable words that take away power and makes women hand over responsibility. 
Words that make me want to shout “please inform yourself rather than be told”, that make me angry at “them”, and that break my heart a little for every woman who says “they told me… but I don’t want to… but they won’t let me.”
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