How I learned to find the positives in special needs parenting (and how you can too!)

I recently addressed a local group about overcoming adversity and finding the positives in special needs parenting.

As I prepared for the speech, I looked back over my life and fully realised, for the first time, just how crazy my life has been over the last 15 years.

During that time:

  • I received diagnoses of epilepsy, depression, anxiety and coeliac disease. On top of those, I also experienced a suspected mini-stroke nearly 3 years ago now, which was the scariest moment of my life.
  • I watched my father receive a cancer diagnosis, lose his voice box, struggle to communicate, suffer through immense pain and, ultimately, lose his life.
  • I farewelled my job of nearly 20 years, a job I enjoyed and loved, because I could no longer balance the needs of my family, my health and my employer.
  • I received 5 separate diagnoses for 2 of my 3 children. My eldest son, Gilbert, received diagnoses of oculocutaneous albinism, autism and generalised anxiety disorder while my eldest daughter, Matilda, received diagnoses of autism and separation anxiety disorder.

When you look at it, in black and white, it’s quite a list.

Some days it can be hard to keep going (which is why chocolate and wine are my best friends, just quietly x)

However, I know I need to keep going. Because life is more than events, diagnoses and challenges.

When I was young, I remember my parents teaching me (well trying to, anyway) that you can’t change what happens to you. Life is life.

But you can change how you react to events in your life.

I remember missing the last part and instead arguing with my mum over the first part, because, to me, that seemed like giving up. Why accept what life throws at you without a fight? I really struggled to see how being passive could help the situation.

Now, as a mother myself, I finally understand. Accepting what happens to you is not being passive.

It’s being proactive.

It’s about making the decision to accept what comes and not waste energy fighting what can’t be changed.

It’s about understanding that your energy is best spent finding a way forward rather than railing against the world.

It’s understanding that you can’t control life but you CAN control how you react to what life throws at you.

(For what it’s worth Mum, I finally understand what you spent so many years trying to tell me!)

This understanding has helped me face and overcome the many challenges of my life.

Instead of only seeing the negatives, I’ve done my best to adjust my thinking and seek out the positives.

I made the choice to find positives in my life as a special needs parent.

How I learned to find the positives in special needs parenting - www.myhometruths.com

I’m lucky that I’m a naturally optimistic person but I’ve still been challenged throughout my life by various obstacles. I may have been nicknamed Pollyanna by colleagues at work but playing the Glad Game doesn’t always work on the worst days, believe me!

So, you may be thinking there’s no way these strategies could work for you. I get that.

But, believe me, if you try hard enough, it’s possible to start leading a more positive life and find it easier to see the good all around you.

How I Learned to Find the Positives in Special Needs Parenting (and how you can too!)

Face up to your fears

Until you’ve accepted your situation and have acknowledged your fears, you can’t move on and see the positives in special needs parenting. You need to face what really scares you and accept the reality of your situation.

For example, I needed to face up to my fears for my son’s future. I was worried about bullying he might receive over his appearance, whether he’d ever be able to live independently, if he’d make meaningful relationships with others and whether he’d ever be able to attend mainstream school.

And you know what? I’m still scared of these things. However, I needed to face these fears in order to find ways to overcome them.

It helped me to write a list of the worst possible things that could go wrong so I could see my fears in black and white. Seeing my fears there, in print, helped me acknowledge them and put them into perspective. I still share the same worries but they don’t have the same power over me.

Facing your fears really is the first step forward in looking at life in a more positive way.

Identify the facts

After acknowledging your fears, it’s time to look at the facts of your situation. It’s hard, but you need to try to be as objective as possible and identify exactly what you do and do not know. Separating the facts from fear and assumption, again gives you more power as a special needs parent and makes it easier to find the positives.

In the case of my son’s albinism diagnosis, we knew his level of vision and where he struggled most (with glare, distance vision, depth perception and focus). We also knew what we needed to do to help protect him from the sun. So, this knowledge gave us a starting point to help him and a direction to follow.

We were able to put a plan together and give him the help he needed, rather than assistance he didn’t require. It helped me to accept his level of disability and, more importantly, understand his strengths and ability.

Listing the facts helps identify the things you should and should not be worrying about right now. I know this process helped me put my fears into perspective and prioritise what I needed to concentrate on.

Ignore the unknown

It’s obvious, but it’s worth the reminder to focus on the things we know rather than the things we don’t. It’s harsh, but there’s no point in worrying unnecessarily about things that may never happen anyway.

Having said that, I’m a control freak so I find this very difficult to do myself!

I’ve had to try to put aside my concerns about my son’s future, such as whether he’ll be able to ever live independently, because it’s impossible to know for sure right now. I’m better off concentrating on developing his life skills now, as a nearly 13-year old, so he has a better chance to live independently in the future.

All our energy, right now, is on giving him the skills to look after himself, increase his executive functioning, safely navigate his environment and giving him the social skills to make connections with others. I can’t waste time on worrying about the future right now – he needs me to help him in the here and now.

It really is more productive to channel your energy into dealing with the certainties and leave the unknowns until they become known.

Separate issues and deal with them one by one

It’s taken a lot of practice but I’m now in the habit of breaking down issues into smaller chunks. It doesn’t help to look at things as one big problem (trust me, I’ve tried this with my son’s various needs!)

The most recent example of this was the long, detailed and comprehensive process we went through to get Gilbert ready for high school. We could have easily been overwhelmed by the totality of his needs (due to his autism, his albinism and his anxiety diagnoses). It’s daunting to identify everything he needs and to work out how we can meet them all at the same time.

It helped me to look at his various needs separately and concentrate on each one in turn. We looked at his vision issues first (concentrating on orientation, mobility and technology) then we concentrated on his autism needs (timetabling, organisation, behaviour and points of contact) before moving to dealing with his anxiety (developing routines, plans and responsibilities to support him).

Tackling an issue as a series of smaller obstacles makes it so much easier to get started, make progress and keep going – trust me!

Shift your outlook

This could be difficult to start with but instead of focusing on what might go wrong and how terrible that will be, I’ve learned to concentrate on how I could turn things around to make things right again should the worst happen.

As a special needs parent I need to prepare myself for every eventuality and that will never change. However, shifting your outlook to see potential challenges in a less threatening way definitely helps cultivate a more positive mindset.

In my son’s case, there was a time where I thought mainstream high school was going to be all too hard. I really struggled to see past everything that could go wrong with his transition. What if he couldn’t find his way around the school? What if he couldn’t keep up with homework? What if he had a meltdown in class and lashed out at his classmates?

It helped me to look at these fears and flip them around. I concentrated on developing strategies to reduce the risk of these events happening while putting in place plans to help him if they did.

This little shift in outlook has really helped me over the years and has definitely helped me get through this most recent challenge.

Choose to view challenges as opportunities

I passionately believe we all need to be open to new experiences. Instead of viewing challenges as obstacles, we need to make the effort to consciously switch around our thinking and see challenges as potential opportunities.

To be honest, that’s the only way we were able to set off on our many travel adventures as an autism family.

Again, my son’s recent transition to high school provides another example of this positive mindset in action. Although we were worried about how he would cope (okay, we were terrified and we still are!), we also knew that high school would give him new challenges, provide interesting opportunities and allow him to show everyone just what he could do.

The challenge of moving between classes? We saw that as an opportunity to build in movement each hour.

The challenge of more detailed subjects? We saw this as an opportunity for Gilbert to delve into new areas of knowledge and be more engaged in class.

The challenge of navigating a new environment? We saw this as an opportunity to utilise new technology and develop a new level of independence.

I’m trying (and mostly failing) to teach this skill to my kids right now, but this simple change in thinking does help me stay positive in the face of new challenges.

Go forth and find the positives

This is a much easier switch in mindset once you’ve started putting in place the strategies above.

There will always be something positive there, however small and seemingly insignificant. Some days all I’ve been able to be grateful for is a hot cup of tea and an unaccompanied trip to the toilet!

But, a positive is a positive, however small. We just need to constantly remind ourselves to look for them.

For example, I use my blog and Facebook page to identify and share something to be grateful for every day because that works for me. If you are looking for something a little less elaborate, keeping a gratitude journal or noting down a positive thought each day on your phone are also practical ways to reinforce this thinking.

For me, making a conscious choice to look for the positives and to be grateful for the little things is ultimately the best way to cope with the unexpected challenges of life.

How I learned to find the positives in special needs parenting - www.myhometruths.com

It’s not always easy to practise positivity, I know. Even employing these strategies, there’ll still be days where you will feel overwhelmed, despair of your situation and want to give up.

Believe me, I’ve had a few of those moments in the last few weeks as we’ve guided Gilbert into high school for the first time. I’ve been overwhelmed with everything we’ve had to do to get him ready and to have his needs accommodated.

Those nights are the ones where the chocolate and wine come out to help keep me going!

However, having these strategies in place for finding the positives in special needs parenting, helps me get back on track faster.

Life will never be easy. As my parents taught me, we’ll never be able to control what happens to us. But we can choose to control how we react to the events of our lives.

I choose positivity and I hope you do too x

How do you actively try to look for the positives in special needs parenting? 

N.B this post is based on a guest post I wrote here.

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18 Responses

  1. Hugzilla says:

    You are a legend. That is all. I’m a pretty pragmatic person in general so when my son was diagnosed I didn’t bother with the hand-wringing and the worrying and the “whys”. We just got on with it and took each appointment as they came. The way I see it we are in the best place in the world when it comes to affordable and accessible medical care. We are so lucky to be here in Australia – the system might not be perfect but we have had great support services and for my son’s disability and access to expensive equipment to help him that we might not otherwise have been able to afford.
    Hugzilla recently posted..My Valentine’s Day Break-Up Letter to Chocolate. It’s Been Real.

    • Kirsty says:

      You speak so much truth. We’re deadset lucky to live here and have access to world class and accessible care. Like you, I’ll never take that for granted.

  2. Bec Senyard says:

    You are so inspiring Kirsty. I don’t know how you do it. And I love how your blog has grown and is helping a lot of parents out there with children that have special needs or get similar diagnoses. You are one incredibly strong woman.

  3. You are a very strong person and I really admire it! You’ve managed to take the best out of a bad situation and you continue growing, even though everyone else would crumble under the weight. Children with special needs deserve our love and understanding, just like every other child. It’s great that you share your experiences, it will make everything easier for other people with the same issues.
    Jane (Modern Housewives) recently posted..Custom Housekeeping Chore Charts Based on Your Cleaning Personality

    • Kirsty says:

      Thanks Jane. I hope what I share can help others or, at the very least, get them to view special needs parenting a little differently!

  4. This is a text-book for parents (all kinds..not only special needs) so they can see they are not alone! Each of us has worries and fears for our kids and yet, you have added issues. The way you write, and add details from your experiences, along with anecdotes is just great. I wish you well for this year. I can tell that having your positive outlook gives you the lead in so much where others would be falling in a heap. Congrats Kirsty!
    Denyse Whelan Blogs recently posted..What Works Best For You? 2017.26.

    • Kirsty says:

      Thanks so much D, for reading and commenting here but for also having my back and supporting what I’m trying to do. I really, really appreciate it!

  5. Some great insight shared here Kirsty – well done! Much of it I can relate to as a mum to an Aspergers boy. Your mother was very wise. There is no time or energy to fight what cannot be changed. It can be really tough at times but with the right attitude you can manage (with some wine and chocolate – I’m with you there)! #TeamLovinLife
    Min@WriteoftheMiddle recently posted..Siobhan White – HYPOXI Bulimba and Newstead

  6. Deborah says:

    I love this positive approach Kirsty. I always wanted to have kids but couldn’t in the end but worried how I’d cope with a special needs child. I’ve got friends whose kids are autistic, two of whom may never live independently, and a friend whose child has down syndrome. I would have been a single parent had I got pregnant so I can’t even imagine the struggle. #teamlovinlife
    Deborah recently posted..Why I don’t read romance

    • Kirsty says:

      It has it’s hard moments but there have been so many more unexpectedly amazing times that I would not have experienced otherwise. Life can throw anything at you. You can choose to be defined by that or you can make the best of it. I’d rather give everything my all and live positively than giving up and living in negativity. But, then again, I’m a glutton for punishment!

  7. Love this! Behind every challenge is an opportunity for growth. You (and so many others) show that daily and I love your positivity.
    #teamlovinlife

  8. What a stunning post/article. I couldn’t agree more…. accepting what is and finding a way forward is showing strength. I often use the ‘serenity prayer’ to remind me of this (even though I’m not religious). Those 15 years included some traumatic and harrowing experiences. You are so strong. Linda. x

    • Kirsty says:

      Linda, your words here mean a lot to me. It hasn’t been an easy period of my life but I’m in a much better place now and I know maintaining a positive outlook has been a big part of getting here.

  9. It’s all a little too overwhelming sometimes, while it bears down on my happiness, I do try to stay positive with what I am working through at the moment. I can see the positives, but it’s going to take a bit more hard work to get there. I do know I need a darn break!
    Alicia O’Brien recently posted..Never boring

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