Which way

In life you get asked so many questions. But some questions keep repeating themselves. Like the classics ‘Are we there yet?’ and ‘where’s the remote control?’.

Then there are other questions. More vexing questions. One question keeps popping up. I’ve been asked this by family members, other parents, teachers and even once a nurse. It does have a number of variants but it’s basically the same question

Will your son get better?

Will his Aspergers improve?

Will his Aspergers improve as he gets older?

I’m no clinical specialist. Just a bumbling parent. But here’s my take on the question.

Aspergers is a lifelong syndrome. It’s not going to get better. Its not going to be cured. It’s not going to disappear. What might change is that over time the individual and the family may develop strategies to help deal better with some of the situations life will throw at them. Also some of the specific symptoms may fluctuate over time. For example in a number of individuals something like repetitive hand flapping may become less prevalent with age. Also Aspergers often coexists with a number of other conditions – dyspraxia, ADHD, dyslexia…. It is possible that some of these conditions could improve with time. For example our son has with hard work started to overcome some of the issues which his dyspraxia and dyslexia had caused him in his earlier years.

So yes it is possible that improvements may occur. But here’s the thing, it’s not guaranteed. Each individual case is different, unique. Things may stay the same with age. They can also get worse with age.

So we just don’t know.

The Clinical Psychologist who did the full review of our Son was quite clear. The majority of his Aspergers related traits will stay with him over his life. However at around the teenage period changes may start to occur. It could go either way. He could become fully independent or he may regress and may need some form of life long support. She talked through a number of possible scenarios. One scenario was that some improvements would occur potentially in the areas of dyslexia and the diminishing of some of the repetitive behaviours. Another scenario painted a downturn in his existing anxieties and fears. This could occur naturally during his teenage years or could be triggered by a single significant event which effects his view of the world. Tips the balance in his risk assessments of the world. This could lead to significant mental health concerns and potentially social isolation. Where we are sat currently, we are not a million miles away from that scenario. The triggers – the death of his mum, a pandemic, his teenage years…. He is currently physically cut adrift from the world. His fears and anxieties ramped up to the rafters.

Nothing is set in stone. We just have to go with the flow and see what life brings. It could be still be a fully independent life. But it could also entail a lifelong requirement for support. In this country we don’t cater for the latter scenario. Support has to be fought and won for young children. That support is at best is patchy. During the teenage years the support tends to be reduced due to funding cut backs. By early adulthood the support has completely vanished. That’s a sobering thought for parents in this position. It really is.

Family History

I was checking my phone for a photo for the blog and I came across this one. Yes Hawklad has been playing Pokémon Go again. Either that or my last selfie was a bit of a shocker.

I am listening to a cheery Pearl Jam cd and thinking about family history. For a lesson today he is trying to list some of his family tree. It’s easy with my partner as we can go back at least 300 years. Lots of documented history. Long line of Quaker and Liberal Political tradition. An MP. With mine it’s more patchy. Yes we can go back to someone born in 1805 but there are lots of blanks. Someone who refereed a big national football semifinal. Someone who walked on the Jarrow Poverty March. A female relative who went to be an exotic dancer in London at the turn of the last century. Someone who was gassed in World War One and survived. An uncle of mine who was a pilot during the Korean War. My Dad who fell in love with Iceland while serving during World War Two. But that’s about it. So many gaps.

So as Hawklad thinks about being partly English, Welsh, Scottish and German (maybe even more diverse), I have a new project. Time to try and fill in some of these family gaps. I owe that to my son.

It’s so important that we keep our own history alive because it forms a narrative to how we are.

Different

Who are you looking at

I’ve always felt like the black sheep in the family. The odd one out amongst my siblings. The youngest by a decade. My brother and sisters had partied together and flown the nest while I was still at school. The tallest. The only shy one. The only one with a stammer as a kid. The only one who went to college and university. The only one you got letters after his name (M.U.P.P.E.T). The only one who never got married (huge mistake). The only bereaved one. The only single parent. The only blogger. The only vegetarian. The only one who has given up alcohol. The only one who is gluten free. The only runner. The only climber. The only one learning a second language. The only one who has visited mums grave. The only Asperger Parent. The only Newcastle United supporter. The only one without a middle name. The only one whose first name doesn’t start with a P. The only one how formed a close link with a Quaker family. The only religious one.

I could go on. Hopefully you get the picture.

Don’t get me wrong. I love my brother and sisters. We are close. Close but we don’t see each other much. Mum was always the centre. The gravitational pull that kept the various differing orbits from spinning away. I will see one sister every few months. Another one maybe a couple of times a year. Brother and the other sister maybe once in several years. An occasional phone call or text maintain a link. But since mum left we are slowly spinning apart.

So yes I do feel a little bit like the odd one out. That’s where friends come in. They get me. They make me feel not different. They make me feel whole again. Thank you ❤️

I will leave the final words to my departed partner. We were spending a night in London before we caught the first train to France. Off on our first holiday together. That was back in 2000. We were in a quiet but very full pub in Kings Cross. After a large lager my partner asked about my dieting life choice. In a voice which echoed round the pub. “Are you the only VEGETABLE in your family…”

Yes I probably am….

Identity and Grief

So pleased to have another guest post for you from Katie and Evee. If you haven’t already, it’s so worth checking out their beautiful blog, twitter (@thegriefreality) and instagram sites (thegriefreality). They have a wonderful view on life and living with grief. Today you will find a new post from me on their blog.

Identity and Grief

Tell me about yourself. What makes you, you?

Grief strips you down to the soil of who you are. When you experience this, you may realize you don’t know who you are. The person who you miss the most has been replaced with this new awkward lump of emotion; Grief. That’s exactly what it was like for us.

When the nurses chatter has died down, and everyone has gone home to resume normal life; You are left with yourself, but who are you now?

This question was one we both struggled with at different times.

Grief forced us to not only walk without Mum in this life, but also to relearn who we were when everything was stripped away.

We used to hold a firm sense of self. We trusted that our identity was unshakeable; we knew who we were, and nothing was going to stop us from being us.

But nothing could have prepared us for how alien we felt when we lost our Mum. What made us ‘Katie’ and ‘Evee’ seemed to have run for cover when we experienced that crashing loss.

Certain aspects of identity are dependent on certain factors; the family circle being one. Your family teach you everything you need to know about the world, how to react and respond. Your family teaches you to love.

When a key member of this circle is taken away; you feel lost, bewildered, confused. How can you continue living as the person you were before, when all of the factors that created you are gone?

The crucial part of this is to know that that version of you is undeniably altered. It may disappear for a little while, but you will come back to yourself one day: just a little more beaten, and a lot more experienced.

This is not necessarily a bad or negative thing. When you cut open a tree, you see the rings of growth; your previous selves are concrete in these rings of growth. The rough patch you are going through is like the bark which will eventually grow into another ring to make up that tree.

No growth comes from being what you were, and staying stagnant in your identity. Growth comes from turning up for a new day, each day, no matter how weary you are. Becoming a new you with those previous experiences making up this new edition of you.

Your loss and your love will always be a part of your identity. Your loved one will maintain an inherent component of you. That is not going anywhere.

You may have a few more grey hairs, wrinkles or awkward branches sticking out, but your core will always be you. Whatever that now looks like. That is what holds you firm, and renewing your green leaves.

Stay hopeful,

Katie & Evee