Maintaining my mental health & relationships

Imagine ....

Your Son was diagnosed with autism a month ago by a child psychiatrist. You are trying to find out what autism is (and isn’t), you are chasing to get appointments with the paediatrician as well as several other therapists whose opinion you need (Occupational, Speech & Language, Educational).

With 2 weeks to submit your parental views to convince the LA that your Son needs an EHC needs assessment, you have been called into school for the third time in a month to discuss his challenging behaviour. They want you to agree to a reduced time-table which you can't support as you both work (it’s not illegal as they are an independent school), and they believe you are “lucky” they are being “nice” and not talking about exclusion. 

Then you get a work email that you need to migrate your email. What do you mean I need to migrate my email? Cue breakdown. 

This happened to me last year. 

I read the two pages of instructions, three times. The step-by-step instructions were thorough but I couldn't make sense of it. On the fourth attempt it was too much to bear - I got to the second paragraph, decided enough was enough and closed my email. 

Fast forward a month.

My Son’s behaviour is getting trickier by the day, school are now talking exclusion, we are arms deep in assessments, the LA authority have turned us down for a lack of sustained external involvement (isn't that why we are asking for an EHC – to get the involvement from the professionals that I can’t get appointments with), I can’t remember the last time I talked to my other half, and I still haven’t tried to migrate my email which means that I am no longer receiving work emails.

I cry over the smallest things, and I worry – all the time. Even my worries have worries.

The pressure on mental health

Trying to care for a child with special needs, whilst trying to establish the support that they need to progress at school and at home brings a whole world of pressure and stress. This in turn can have a major impact on your mental health. 

Looking back, I remember the feeling of desperation and the fear of not being able to help my son. Our life was measured by the target time-frames of the EHCP, and our world became smaller as we limited going out for fear of a meltdown. I had seen doctors and counsellors, and had been prescribed anti-depressants, but I didn't follow up on any of it at the time.There was no time think about our own mental health, and I came so close to burning about and having a breakdown of my own. 

I know that I am not alone in having experienced this, I have come across many other parents who have had similar struggles with depression, anxiety and stress as they battled with different aspects of autism related challenges. This is why I fully believe that supporting autism needs to consider the whole family - and not just the child.

Caring for any child can be stressful, caring for a child with special needs adds even more pressures and sometimes it can feel hard to cope.

Impact on Relationships

It is so easy to forget about our relationships  in between the form-filling, school meetings, learning new parenting strategies, managing meltdowns, attending appointments, reviewing assessment reports and generally researching the internet for pointers on the things we should be thinking about or looking into.

Good relationships help us live longer and happier lives, with fewer physical and mental health issues

In the past year my relationships with my Son, my daughter, my partner, professionals involved in assessments, and teachers were all put under pressure as I fought to help my Son, while relationships with friends and family were largely ignored as we focused on the daily struggles in front of us.

The most challenging, and anxiety causing relationship was with our previous schools as we battled exclusion due to challenging behaviour. This is the relationship that I would most like to change.

I am not quite ready to join the P.T.A, but I do want to find a way to build relations with the school & teachers. This article on the Mighty has a great set of suggestions for parents and teachers - and I hope that with time we might be able to find a way to work together to help my Son.

Talking about the pressures on the relationships at home is not an easy thing to write about. Let's just say it was not good, and there were times when I wondered if we would make it as a family. 

Thankfully our relationships are flourishing again now that we have space to focus on things other than autism, getting an EHCP and potential school exclusion. We are finding ways to bond as a family, and last week my other half even suggested a date night (I didn't realise the intention, and almost took it as a suggestion to arrange a work team night out). 

Coming out the other side

Thankfully things have changed, and the anxiety that plagued me has diminished. I realised just how far we have come three weeks ago when I caught myself singing along to A whole new world (yes I do have the theme song from Aladdin on my playlist) as I laid a new pathway in our garden. 

Some might say what a difference a year makes, I say what a difference making small changes for 365 days can make. These are some of the things I tried.

1. Find a way to work through your emotions

Finding a way to express my thoughts and emotions allowed me to work through them and let them go, rather than dwell on them and let them drag me down. 

This blog was a big part of that. I blog for me and share it for other people. Each time there is something on my mind I draft a post, and get all my thoughts and emotions out - it is an extremely cathartic process. By the time the post is ready for publishing, I have organised my thoughts and processed my emotions. 

For some people, this can involve talking to friends, family or professionals. For others it can involve doing something active such as going for a run, or heading into the garden. Anything that lets you put things into perspective. 

2. Forget the past, deal with the present, and don’t stress about the future

Trying to be mindful has really made a difference to how much I worry about things which I can't change, and has reduced the overall levels of stress that I was feeling. 

My new motto is to only focus on the things which I can change that are important right now, and not worry to much about the things that have already happened or that I will need to focus at some point in the future. I am spending so much less time thinking (and talking) about what did or may happen, and my brain is enjoying the downtime.

My energies are now fully focused on what I need to do right now, which makes everything seem a lot more manageable. I have come to terms with the fact that I can't do it all, and I am not going to get everything right all the time. I may miss something important, but that is ok. 

3. Look for the positives

I became focused on the challenges and the negatives, and lost sight of the great things that were going on around me. A FB group, PDA Positive, helped remind me to look for the positives. Looking for the positives helped to change my focus and lighten my mood.

From the spontaneous bunch of flowers that my Son picked for me from the garden, to the Lego Phoenix he made using his imagination I have taken them in and celebrated them for all that they are. 

Then the Happiness Project helped me to think about the things that make me happy, and after reading it I set myself happiness projects which forced me to do things that I might otherwise have ignored. 

I can now make a mean biscotti thanks to an Italian cookery class, which was linked to one of my happiness projects. Those biscotti, with a nice cup of coffee, have brought me SO many positives!

4. Take time out – alone and as a family

Taking time for myself is now one of my top priorities, as I know that I need ME time in order to support the family and be there for them. From my Italian cookery course to enjoying time in the garden or with my camera, I have been able to remember the things that I love. This has help to make life seem so much more balanced. 

Getting out together as a family has been another priority for us, with day trips to the seaside and various Merlin attractions (easier with our max card). For so long we avoided going out as we wanted to take the easier route of staying at home which we knew would be less stressful. 

I am so glad that we have made the effort, as these days out have allowed us to have fun as a family - banking positive memories and building bonds which we are able to draw on in the more challenging times. 

5. Reach out for help

There were times when I felt so alone, and so isolated. Reaching out and asking for help has had a huge impact. I don't know how I would have made it through the year without the support of professional counsellors, charities, friends, family, local support groups and online support communities. 

The community support around us has helped us keep going through the tough times and I regularly reach out to others for help when I am faced with a challenge that I don't know how to tackle, as I know that we can't do this on our own. 

Supporting families with autism needs to be as much about supporting the mental health of the parents / carers, to ensure that they are able to remain resilient and face the challenges that come their way.

With mental health awareness week I am grateful for the support that we have received, and am committed to strengthening the relationships around me so that we don't let them fall victim to the challenges that living with autism can bring.

My MHAW #RelationshipsResolution will be to take time to find a way to build a relationship with my Son's school. What's yours? 

Useful links I have found

  • Cerebra, a charity which supports children with special needs, provides a free telephone counselling helpline for carers and has a freely downloadable Stress book to help families manage stress. 
  • There are a number of great links to professional help on Affinity Hub, along with numerous resources aimed at providing emotional support to parents of children with special needs. 
  • The Samaritans  have a helpline that you can call up to talk to someone about something that has been troubling you. 
Sons, Sand & Sauvignon

Cuddle Fairy

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