There’s a Van Morrison song that talks about when things are better. For anyone who has a children on the autism spectrum, we find that we are just holding on to that glimmer of hope that days will be better than the current day we are in. As I write this, my beautiful little boy is having a massive meltdown and is telling us that he doesn’t want to be part of our family, that he wants to die. These kinds of words come from his mouth quite regularly and have for a number of years. It was one of the things that caused us concern and eventually it lead us down the path to testing and diagnosis.
Now, not a lot of people will see what happens to parents of kids on the autism spectrum. They don’t see the heartache of not knowing why their child isn’t coping. They don’t see the struggles with finding extra finance to pay for what they need to in order to help their child develop. They don’t see the tiredness from the extra hours that are taken going to appointments, researching different issues, praying for solutions and insights. They don’t see the loneliness because what previous social life existed has been severely curtailed. Or the stress involved with juggling the needs of two other children, who have their own challenges and issues and concerns and who just want Mummy and Daddy to spend time with them.
Parents of children on the spectrum forget about the grand goals of life that they had for themselves and their children at times as it gets too much to handle the daily challenges, the daily issues. They forget about the purpose that they were created for as they struggle to just make it through one meltdown, one appointment, one fussy meal, one judgmental stare, one rude comment, one rejection for their child…at a time. So instead of enjoying life like they should, they enter survival mode. They just hope to get through one day at a time. And then if there are any added issues that arise with them, personally or as a couple, it can all become too much.
I know this has been my experience over the last 6 months since Mr E’s diagnosis. I’ve had to deal with learning about the triggers that upset him, what things I can do to help him, take him to appointments and put things into place to make it easier for him. All the time, I also have my own challenges with health and my mental well being. Add to this that our family has had an external situation to deal with, my wife’s new job has increased her workload, a business that isn’t growing, other children who need help with what is troubling them and I can safely say that it has been a rather challenging time.
At times, I have lost hope in the promises of God for my future, of the dreams that I have had. I have struggled to write the books, blogposts, articles and other documents that I have ideas for. Struggling to comprehend how I feel. Not knowing how to deal with my own challenges. Trying to lead my family in the path God has for us and feeling like we are failing in that. It has caused me to be withdrawn, short tempered, afraid, quiet, highly anxious. I haven’t been coping with things I normally would. And as I look at my family, I find that we are all the same.
It is times like this where we have had a song, a verse, a sermon, a text, a call, a Facebook message or just a time of prayer which have given us strength. It has been the occasional person who’s encouraged us or taken the time to ask how we are doing and not cared what the real answer is. These things have helped us get by. Knowing God will get us through, that He’ll help us understand how we can help others through this situation and He’ll give us the strength to share our story, has been a rope to hang onto as we dangle off the cliff.
The song I mentioned earlier is called Days Like This. The first line says “When it’s not always raining, there’ll be days like this” This line helps me to realise that gloomy, dark, cold, wet days aren’t always around – just like days when Mr E isn’t at his best, when I’m not coping, when the family is fraying at the seams – it won’t last. This is but a season and no season lasts forever even though it may seem like forever.
If you know someone going through a tough season, then the very best thing you can do for them is to be there for them during the hard time, so you can help them celebrate the good times when they get through it. The Bible says we mourn with those who mourn and we rejoice with those we rejoice. It is time to walk alongside those whose journeys aren’t rosy and whose strength is failing to the point where they can’t keep their head up.
If you want to know what to say when someone says they are going through a tough time – try this: how can I help you? And then follow through. It may just be a listening ear is all they really need.
Thanks for reading 
Oh, and here is a clip of “Days Like This” by Van Morrison