true tales from the gates of the underworld

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.


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?