8 Top tips for navigating through difficult experiences with autism.
That moment you find out that the challenging behaviours are due to the Autism Spectrum Condition. That is a life-changing moment for any autism parent. That is how it was for me.
My daughter was 12 years when I first heard that she could be autistic. At 13 years, she was diagnosed with autism and pathological demand avoidance, PDA (ASC profile). PDA’s main characteristic is avoiding everyday demands and expectations to an extreme and is rooted in anxiety.
It is a challenge raising a child with autism, a rare form of autism, a high functioning autistic who will integrate into society and a gifted and talented autistic. In my experience, I find that I don’t only raise a child with autism but must also educate everyone and anyone who meets her on how to interact and engage with her and interpret her behaviour. It’s exhausting.
If you are an autism parent reading this, then I suspect you can relate.
My daughter is now 16, and I can see a new life emerging for her and myself. I can see the light at the end of the tunnel, and I have gained some time back for myself. But this happened not without trial, error, and training. Incorporating well-being into my life was of utmost importance during the most challenging times. So today, I want to share some of my top tips on how this is even possible, especially when you are going through the most demanding period.
Yep, this sounds so simple or is it? Take care of yourself first. Here’s a metaphor to understand this concept better. If you feed your children but not yourself by the 6th day, you will not survive. You will have very little energy to support yourself, let alone your children. So, ensure you are feeding and nourishing your mind, body, spirit, and emotions. Do not put yourself last on the list because your family relies on you. They count on your mental capacity to help them navigate to a secure and safe place. Your children depend on you to emotionally support them, and they rely on you to physically provide for them.
My next question is, who supports you?
2. Create a network of support for yourself
Of course, you create a network of support for your child/children. This includes the school, Occupational Therapist, Psychologist, Paediatrician, and this list can go on depending on your child’s needs.
But equally, create a network of support for yourself too. I had a counsellor, my reiki therapist, a massage therapist, an osteopath, and my GP. If you cannot afford any of this, then a good friend you trust and can be non-judgemental can be of benefit.
You can sometimes think that you are invincible (you are not alone in thinking this). It will eventually catch up with you and pull the rug from underneath you. But I will recommend you consider investing in yourself and your emotional and mental resilience.
3. Creating well-being in the home
Your home environment is essential. It’s the place where you spend a lot of family time. With a child with autism, that place can be both enjoyable and a place you want to escape. So, creating a healthy home environment is crucial.
Anxiety is a massive emotion that can plague an autism home. As a reiki master, I reiki my home environment. I place crystals and salt lamps to absorb some of the chaotic energies, and more recently, I started using Young Living essential oils. The one I use the most is Stress Away, and it works a charm. My family and I cannot live without it. We even use drops in the car so that everyone is less stressed and anxious by the time we get to a destination.
4. Organizing your home
Whether your child can read or not, labels are a must in every autism home. I put labels on everything, even if it seems obvious to me.
At first, it didn’t look like a label on a cereal container was doing much, but as time went on, she started to get little things for herself such as cereal, milk, her socks etc.
The more she saw where items and objects were, the more familiar she became with her environment, and it gave her the confidence to attempt independence. Alongside this, make sure there is a place for every item. Autistic children like their environment to be the same. It makes them feel safe and secure.
5. Don’t take things personally
Autistic children are still developing their emotive language compared to their peers. So, as a result, they tend to use extreme words to express how they are feeling. Sometimes, adults can become offended by this. They are simply still learning how to articulate a complicated emotion that they are feeling.
So when they are calm and feeling more secure, you can explain how those words might make someone feel and help them use more appropriate language and give them examples of how to express those feelings. But this can take a long time to embed, so be patient and, more importantly, don’t take it personally.
6. Don’t ask your child how their day went immediately after school
Autistic children need processing time and a lot of it. So let them have as much downtime after school. It will support your well-being, and it won’t trigger their anxiety. Triggered anxiety, hunger, tiredness, and sensory overload can cause meltdowns.
Just let them chill.
7. Let everyone who’s working with your child work with your child
What I mean by this is that you must allow others to work with your child without micro-managing what they do with them. School staff will get it wrong. They will make mistakes, and it may cause distress for your child. That’s ok. Children, even autistic children, need to learn to solve their problems; otherwise, we hinder their progress. Educate So do educate staff because you know your child best but avoid micro-managing their every move because their job is to help your child integrate into the school community.
You can also achieve this by being a supportive parent to your child and explaining things when needed. Other times be a listening ear and ask, ‘so how can you solve this problem?’ Allow them to think for themselves. It’s an important life skill to learn. As long as your child is safe (and I cannot stress this enough), create a supportive space for your child to solve some of their problems.
8. Schedule Me Time
So, I know I mentioned self-care earlier, but now I want to talk about scheduling that “ME” time. When you schedule time for yourself, then it is more likely to happen. If you don’t schedule it, you will go to the bottom of the list or fall off it.
Don’t wait till you are completely overwhelmed before you do something for yourself. By that stage, you need a therapist. Instead, schedule a little bit of time for yourself every day.
YOU ARE IMPORTANT!!
Schedule one thing that is destressing – mediation, mindfulness, reiki, walking, yoga or whatever works for you.
Schedule an activity you enjoy doing – dancing, painting, crocheting, baking etc.
Schedule eating and nourishing your body.
Schedule your sleep time.
Schedule drinking water throughout the day. Have a big bottle that you carry around with you or set your alarm to drink water. Water is a great detoxifier, hormone balancer and brain energizer. As an autism parent, you need a lot of brainpower.
So here you have it. Just some things that helped me navigate through my most challenging times.
Managing your well-being during tough times is like ensuring you have oxygen to breathe. Give yourself a break. You are doing the best you can.
Author Annie Gillenwater
Get in touch if you want to talk further.