Was Roger An Angel?
I’m not sure. I met him on a train.
About 6 months ago, I was waiting on a train station with my 11 year old son Daniel (who has autism). A terminating train had just been and gone. Daniel began screaming and hitting me. No reasoning about why we did not get on that train could penetrate his brain now that he was in “meltdown.” This is not just the tantrum of a toddler wanting their own way. It is the behavior of one who is struggling to make sense of the world around them. He has perfected the art of using his diaphragm to produce a very loud, high pitched, ear piercing, squeal; and he hits his head so hard, you’d think he’s going to give himself brain damage; and he recently began hitting us; and throwing anything within reach! Nothing for me to do, but protect property and people until it’s over.
A man called out to the lady next to me – “is that one of your girls making all that noise?” In her defense, I say “No it’s my son. He has autism and he’s having trouble coping with…” I didn’t finish. I thought ‘I don’t need to explain to you.. you wouldn’t care anyway.. you only care about the fact that you are having trouble concentrating on what you are trying to read.. you wouldn’t care about the fact that I have to deal with this every day – in public and in private.’ The lady said to me, “It’s hard on you as the mum, isn’t it?” Yes ... I explained a little of the cause of the blow up.
I know there are valid reasons for his “meltdowns” = he doesn’t understand that sometimes you need to wait, things change – things move location, things sometimes don’t work like they used to, sometimes things get broken. He doesn’t understand why he can’t have some food item this time that he had when he was there last time. He gets anxious when he doesn’t know where he is going, what is going to happen. Sometimes there is too much sensory input and he gets overloaded. And then there is the constant pain/problem he calls “plopping” in his brain and pain in his gut.
I sat there – defending myself against Daniel’s blows, until he settled down again. Then my thoughts turned to memories and friends, hopes and disappointments.
Tears welled up, as I thought about some of the other recent places this had happened in public – airports, shopping centres, trains, on family holidays, at various outings – I get used to “all eyes” staring at us, comments made, yells from other people to “shut that kid up.”
I thought of my friend whose 5 year old son has just lost his diagnosis of autism (“totally recovered”). I am happy for them… but it hurts too… we’ve been trying everything we could find and afford to help Daniel for the last 8 years…
I thought of all the people we’ve seen for assessments and therapies (psychologists, speech therapists, occupational therapists, behavioural management programs, autistic centres, special schools, allergists, paediatricians, biomedical doctors (even expensive specialists from USA), remedial movement therapists… The services needed – respite, medical and communication aides… All the time spent in therapies (at appointments and in home programs) – educational, behavioural, movements, listening therapies, speech therapy… homeschooling (we had to pull him out of school 4 years ago)…
I thought of the daily hours of extra work – mixing of multiple supplements and syringing into his mouth; extra cooking due to special diet needs; extra washing & cleaning (wet beds & poo smearing – bed, carpet, walls, trampoline, pathways, not to mention his hair!); assisting him with self-help skills like a toddler (dressing, bathing, toileting, teeth-cleaning, eating); home therapy programs; use of his communication machine for his homeschooling & more complex conversations…
I thought of all the lack of sleep I’ve had – sometimes for weeks at a time surviving on 3-5 hours of sleep per night – due to kids that don’t sleep well…
I thought of all the house moves we’ve done – 7 times in the last 3 years – searching for that right location for our family to get the services we need and recover health…
I thought of the money spent (possibly around $120,000) and all the fundraising I’ve had to do to raise the money for Daniel’s needs (as more than half of the last 10 years, Adrian has been out of paid work due to his own health issues)…
All we have done has helped – most of the money we have spent has been worth it … But after all this our child has not lost his diagnosis…we are still here – with severe autism – limited speech, obsessive-compulsive behaviours, limited social understanding, delayed development, and these meltdowns!!!
Our train came, we got on, found the last seat available in the crowded carriage. I sat there, tears welling up in my eyes, too tired to really cry – I’d cried so much before. I wish I had the answers to fix Daniel’s problems… but most of all – I’m just so tired of it all. It is all so hard. There are some days I wish this was a job – I don’t want to quit or resign, but just call in sick some days and say I can’t come to work. But I just have to keep going. It took about 30 minutes to sort out my self-pitying thoughts and reconcile myself to the position God has allowed me to be in.
God has His reasons, why a friend’s child can be “totally recovered” but we still struggle along with such difficulty. One day I will understand. I know God says that he will supply all our needs, and nothing that He allows us to go through is too much for us.
Perhaps Daniel is shielded from many temptations that other boys face, as autism allows innocence to much that happens in the world. Daniel has a simplicity to him – he does have a relationship with God, loves to sing Christian songs from his DVDs and loves going to church. He does have a lot of the day that he is very happy – lots of laughter. He is such a polarized character – it’s all on or all off – either really happy, or having these screaming sessions.
A short time before our train trip finished, we moved to a seat on the other side of the carriage. An elderly gentleman moved across and asked “Do you mind if I sit here?” He introduced himself as “Roger” and his wife sitting opposite was, I think, “Bernitta”. He chatted with me about Daniel and where we live and where they lived. But one of the first things he said to me was: “You’re doing a good job with him.” They might not have been the exact words – but it was certainly words to that effect. Roger and Bernitta got off at the same station as we did – and they went up the lift. We parted ways.
How did Roger know the struggle I had just had in my mind? How did he know my great need for some reassurance about all I was doing with Daniel?
I know my Heavenly Father knew I needed some reassurance. To my delight, I realized – it was my Heavenly Father speaking to me through this man. My Heavenly Father said to me that He thought I was doing a good job with Daniel, that He was pleased with me!!
Little did I know how much I needed that reassurance in the next couple of weeks:
- When visiting a friend I hadn’t seen for 15or 20 years – who was staying with her Dad in a retirement village where my parents lived – I left Daniel to stay in the car in my parents’ driveway – so that he could go into their house when he was ready… came back to find he’d cracked the windscreen with his foot or water bottle or something!! The price I have to pay to be social – to enjoy a friendship!
- When cleaning splattered poo off the bathroom walls and off the trampoline and off the pathway in the yard
- When he is screaming and hitting me and throwing things around the room at 3am because his “plopping” in his head is driving him insane. – and I’m alone because my husband and other son are visiting relatives in another state!
- When cleaning up a smashed plate he has thrown across the lounge room – because of his “plopping”
- When he’s screaming and hitting me because his food is not ready yet (and he has low blood sugar) or his food is too hot to eat yet, so he won’t burn his mouth and insides.
- When cleaning up wee from the toilet floor practically every time he goes to the toilet – because he still sits on the toilet and misses.
- When he is screaming because we go to a new shopping centre and he’s not familiar with it.
Roger couldn’t have known the emotional struggle I was having – how did he know I needed to hear that? He didn’t, but God did – and suggested to Roger to go say those words to me. Roger listened and became a channel of blessing from my Heavenly Father.
Or did Roger know – was Roger an angel? My guardian angel – sent with words of encouragement for me?
I don’t know – but I guess it doesn’t matter whether Roger was an angel or human – he was still a channel through which a message was given me, direct from heaven, that God was pleased with me. And the thought that God thinks I’m doing a good job, carries me through the hard times I’m still having.