SEN

Life on Jupiter

| caraconquest

Spring 2020 has announced itself with a worldwide pandemic, a lack of loo roll in London and my son declaring there are daffodils growing in our ramshackle garden. A year ago, we were wringing our hands about Brexit (now we’re just washing them), I had planted a ton of bulbs that were all pulled up to make space for the new fence, and we received Sam’s Autism Spectrum Condition diagnosis.

A good friend had the grace and wisdom to tell me, while I recounted our meeting with the diagnostic team through hiccups of tears, that the first year would be hard.  That even though the diagnosis was expected, and requested, to go easy on each other and myself. That I was allowed to feel all the things all at once. Relief, fury, confusion, fear, hope, worry, sadness to name only the ones I could articulate. There were many I could not. A relief that I could now parent with impunity. That I had permission to no longer follow the rules, a gut instinct I knew to be right but which had been so at odds with the norm was now validated. A pass to be ourselves.

Our bossy and jovial speech therapist advised that I spend some time wallowing in the often forbidden emotion of self pity, in order to really feel it, and get it out of my system. But not to ignore it. We had to run the gamut of it all to move forward. She spoke from her own experience, and was kind.

Of course I ignored her and in a bid not to feel it, I spent most of the first few months reading all of the literature I could get my hands on. I reached out to people online, I read biographies, I swatted up on all of the council’s recommended guidelines. I went to conferences on the weekend. I started to feel heavy with the weight of it, the stats, the lack of resource, the negativity. I got completely consumed by it and had to stop or risk full burn out.

Somewhere between the academic journals, the blogs written by autistic adults on ethical therapies, and the forums on Facebook I realised I wouldn’t be able to study my way out of this. Our road map was in front of us, making words out of magnetic letters on the fridge and collecting every peg in the house to create a rainbow on the carpet, singing Iggy Pop’s The Passenger on repeat.

I started listening, and crucially, began accepting help.  With the support of an amazing team in our borough, we transitioned Sam from mainstream nursery to a setting that caters for his needs within a mainsteam pre-school. We started working with the utterly brilliant and committed head teacher there and started unlearning and re-learning. We have accessed parent support groups and training, and finally after many many months of WORK (alongside, you know, normal day to day work) we secured Sam his Education, Health and Care plan and a place at a wonderful school in September.

For the first time in a year I feel like I can lift my head up, take a breath and enjoy the view. It’s amazing, in its quirky, definitely not normal way. Today, we have fifteen multicoloured balloons in the bedroom, five rainbow coloured hourglasses dotted around the house to remind us when we’re due to redo the puzzles. An assortment of magnetic numbers part way through sums, part way having adventures with their letter counterparts.  A selection of musical instruments propped up next to their corresponding letters.  Calendars and wall charts and pencils for colouring and writing and drawing, literally everywhere. On any given day our flat looks like a pintrestcraft board exploded. Chaos and order humming together seamlessly to the tune of the Go-Jetters theme song.

Its become more and more important to celebrate these moments of joy. Grab them out of the ether and commit them to a memory, guard them with ritual. We make up happy dances, and bounce around way past our collective bedtimes. We eat chocolate buttons for breakfast.

Uncertainty has become a strange and constant companion this last year, nothing has been guaranteed, and very little remains set in stone. We now have a few hard won dates we can start to build around, carefully and with an eye on the horizon, but if I were to look for silver linings they would be this. I am more equipped to navigate difficulty in all its forms, I can pivot and realign quickly and calmly.  I have found a steely sense of purpose, a kind of laser focus that has meant I can see very clearly what needs doing when. I have been forced to get clear about my boundaries for my health (physical, emotional, spiritual). I am still learning to enforce them. I know who I can rely on to help. I have learned to ask.

My son asks to go outside and see the moon (and Venus mummy), and it will be full tomorrow. We’ll put on our wellies and our coats and step into the front garden and look around for the moon rise, perhaps just above the Wembley Rainbow as its known here.  It will be cold. But it will be bright and we’ll talk about the time we saw the moon in South Africa above the mountains, and when we saw Orion. And the Southern Cross. He’ll insist he can see Jupiter. I don’t correct him, just maybe he can.

The Art of Asking

| caraconquest

Support. The comfort of knowing you are held up, and that your decisions are validated. That someone has your back. That you will not be let down. That there is someone to help you when you need it. That you are not alone.

I am obsessed with support. Writing out endless forms to get my son into the appropriate preschool, and to secure funding for said preschool. There is support available. But there are hoops first, a veritable cornucopia of obstacles. May the odds be ever in your favour.

Anyone who has crossed paths with the local authorities knows what these forms are like. DESCRIBE THE WAY(S) IN WHICH YOU NEED THIS SUPPORT, they shout at you in thick bold letters, on inscrutable PDF formats that don’t format correctly when amended. GIVE EXAMPLES OF THE SUPPORT REQUIRED & THE TIME IN MINUTES EACH TASK WILL TAKE.

I do my best to list and correlate and describe in intense detail exactly what support he needs, in which areas of his development, and at which time of day and how frequently per week. Forty pages at the last count. NOW PLEASE GO TO PAGE 72 and DETAIL ALL HEALTH PROFESSIONALS (and their national insurance numbers in birth date order). I would do it. Because we need the support.

In a flurry of weeks ahead of a looming deadline, we do the work. We jump the hoops, we wait. We wring our hands and chase up on the phone. We leave polite but anxious messages. We fill in more forms. We wait. And then….We get the place. JOY! We do tiny dances in kitchens and whoop with the key workers and write effusive thank you letters to the people that have helped proof read, add supporting documents and counter signatures. We kick start the next round of logistical planning. We almost remember to take a breath and then forget.

Three days later I sit in the humid front room of my counselor’s house with my head in my hands and breathe. The windows are all flung open onto a very smart street in Hampstead, but the curtains are closed to keep the strength of the afternoon sun at bay. It gives the room a strange illicit feeling. Like she should be burning joss sticks and smoking opium. Maybe she does. I don’t know this woman well. We have had a few sessions. She mainly listens and asks pointed but relevant questions. She frowns far too much. I think it might just be her face. This is my chosen support. Cobbled together fairly last minute when I found myself crying on the tube and unable to sleep. I’m unsure about it at this point.

During this session, I have been waffling on a bit, not really sure what I am getting at and feeling irritated with her quiet nodding. Exasperated, and probably a bit on the dramatic side, I sigh

‘I just feel like I need more support’

She frowns from her wicker chair in the corner where she sits like a sphinx, both arms perfectly still on either arm of the chair. She cocks her head to one side,

‘What support do you feel you need?’

And there it is.

I have no fucking idea.

Outside of that room, I am at a loss. A friend of mine who manages large teams in a high profile job, and a big family, puts a question to me. Its the same one she puts to her employees who say they are finding it hard to get the work life balance to make sense, she asks, ‘What do you want me to do about it?’

Not in an aggressive or defensive tone, but as a real question. What do you need from me to help you? What does your unique set of circumstances require?

I realized, while sitting on this very worn sofa in semi darkness somewhere in NW3 that I needed to to know the answers to these questions. What support do I need? What does it look like? How often will I require it? Does it require input from a different department (family) or additional funding (HA)? If I were applying for support for myself – what would I say on the forms? As a grown woman approaching 40 I need to get better as knowing the answers to these questions, and when someone offers to help, to say YES and explain where it would be needed.

If I have learned anything this year its that you need a team around you. We have a brilliant one in place for our son now, its flexible but has a solid foundation in the right health professionals, independent third parties and outsourced advice, so I don’t feel if one had to go we’d be bereft. I’m looking at building something similar for myself. Starting with family and working my way out. Looping in new connections, making sure there’s a good mix of advice, and time to be on my own. For me support is equated with finding time not to be a mother/wife/boss/general of life admin. Support is getting help with those things, asking for specifics. And letting go of the rest.

Parenting: A Foreign Country

| caraconquest

Opening the door to an empty house is a novelty I am not used to. Returning from a work trip, foggy with jet lag but jumped up on caffeine I braced myself for the usual onslaught of a bouncy three year old and the cacophony of kitchen chaos that soundtracks most of my mornings. A click of the lock and a swish of post of the floor – almost silence – and I remember my family are happily scoffing scones in Cornwall. I have 36 hours to myself before they return.

Its a rare thing, time to oneself. I’m lucky enough in that I travel with my job. I have hours up in the air with a kindle full of almost-books to read ahead of publication, and time to revise notes, presentations. None of this requires wet wipes, there are very rarely tantrums, and I get to tune out for as long as we’re cruising at 31,000 feet. But its not strictly relaxing. Low level anxiety that spikes when the turbulence kicks in, a last minute delay which has a knock on effect on the meeting schedule. All inane and completely able to ruin a tightly planned week, so the ticker tape of ‘things-that-must-be-done’ switches from tantrum wrangling, to currency conversion while we’re waiting on those magic words from the pilot – ‘Cabin Crew : 20 minutes to landing’

Away we go, passport control queues, ‘How Long Are You Planning In the United States Ma’am’ and sometimes ‘Welcome Home’ (when I’m in South Africa) but mostly ‘Please Look Directly At the Camera’ and ‘Four Fingers on Your Left Hand Here Please’ – the flurry of coats and bags and belts and restricted areas, visa requirements, taxi lines, hustling bag handlers, checking in, finding wifi and adjusting the body clock. There is an expectation, a calm order in the chaos tightly wound beneath all of the hustle and bustle. I find it very reassuring because compared to my day to day as a parent its predictable. If things go wrong there’s travel agents and insurance and teams to help. Not so at 3am back home in London when fevers top 40 degrees, the calpol is running low and no one can find the asthma pumps

Its been 3 years since we have been lucky enough to find ourselves here, parents. We have found our own ways to manage the night time crisis, tag team the pick ups and drop offs, the day to day hum drum minutiae that comes together to make a family tick, although never like clockwork – and unique in its quiet rhythm. It’s that off beat singularity that surprised me. I had assumed that we are more similar than different, and at the heart of it we probably are. In that we love our kids. We’ll do irrational, crazy stupid things for them, that sleep deprivation fucks us all up, that nothing is as we expected to be. Sometimes its better. And sometimes its not. But we share the first smiles, first steps, first milestones together. We can count on sharing birthday cakes at parties, and moan about nursery fees, and fret about schools, we do this together, at roughly the same time. Comparing notes.

Until we don’t.

We noticed Sam wasn’t picking up language at the same rate as his peers around the 20 month mark. I wrote it off as being a Super Tiger mother who was expecting far too much of her toddler son. When he refused to engage in playgroup activities, preferring to investigate the out of bounds church offices, or to just literally try to climb the walls – I told myself he was probably shy and introverted and just didn’t like new people. And when he bolted off into the sunset without even a backward glance at literally any given opportunity I scoffed and said he was incredibly confident and independent and my weren’t we doing a marvelous job at making him feel secure. He wasn’t making eye contact because he was shy, and therefore not interested in strangers. He was used to us anticipating his needs so didn’t need to speak. He was, just Sam. And all of this is just my very normal parent anxiety

And it is. Until it wasn’t.

We met the Pediatrician who diagnosed significant speech delay with attention/social & communication difficulties. And so began the building of The File (all parents of SEN kids will have one, or a drawer, or an entire wing dedicated to the paperwork). I still can’t read the first report without feeling queasy. Its blunt and medical and objective. Which as a parent you can never be about your kid.

We were referred for everything and introduced to ALL OF THE TEAMS. A few were exhausting – OT (rejected once, appealed, waited a year, jury’s out), and Audiology, (four appointments where he refused to wear headphones, ironically he loves them now). There are others who are nothing short of my personal heroes, our amazing Speech & Language Therapy team, which we would be lost without but who we can NEVER call (its like that episode in SATC… she can reach me, but I can never get her…).

Not forgetting the secret SWAT team that appeared out of nowhere -the brilliant Early Years Inclusivity Team who have coached, cajoled, answered stupid queries and fought battles for us with nurseries and waiting lists and impossible switchboards.

All of this has been happening over the past year, mainly behind the scenes, between the usual routines of work and childcare and college. I have been lucky enough to have had a very supportive & flexible work place and a self employed husband so we can just about keep up with the barrage of admin that comes with each department at each stage. But its taken me a year to get my head around the parenthood that we have found ourselves in. My head is still catching up with the reality of where we are now. A feeling not dissimilar to jet lag.

So where are we?

We’re not sure. Its not where we expected to be. But its not without its charms. Sam adores his speech therapist and is making huge progress every day. He is so damn smart. He loves his nursery and drives them crazy by refusing their lunches and demanding jam sandwiches. He gets all his pronouns wrong which is hilarious and his echolalia makes for interesting listening – it like having a spy at nursery. He’s obsessed with colours, letters, shapes, numbers and fascinated with words – like hes making up for lost time. He wants nothing more than to jump on trampolines and chase his pals while shouting. He loves cuddles and lemon yoghurt, diggers and the 182 bus to Brent Cross. His laugh is magical, and he laughs often.

The CAMHS team assessed him for ASD today and we’ll know more on May 22nd. But whatever the outcome, if this year has taught me anything its that help has come from unexpected places. That there are extraordinary people both health professional and friends who will listen to me cry about ‘labels’ and gently remind me that the more information we have, the more we can share with others to help them understand Sam. That the fear is of the unknown. That people will surprise me. Friends (online and IRL) who will educate me about policy and politics. They will text me their experiences warts and all to give me the heads up on what not to do, and what all the acronyms mean. My mini guide book on WhatsApp. You know who you are. Thank you.

Next up. Choosing a school. The fasten seatbelt signs are now on.