If Only People Knew

 If only people knew the trauma of having a child with autism who reacts with violence and aggression multiple times a day. The fear and anxiety it creates. The fear of the siblings getting seriously hurt, the fear that this beautiful child, whom you brought into this world, will not be able to grow out of it. What would the consequences be?

“I don't see it,” others say. " She doesn't seem autistic to me.” If only they knew what it is like to be their child’s ‘safe’ person, and behind closed doors, all masks are down, and the gloves are off. It is an unseen battle that scars the soul.

“Have you tried this?” " Have you tried that?” “I would do this,”” I would do that,” "I did this with her today and it worked, you should try it", and the clincher, “You need to discipline your children more.” The wounds to these words go deep because YES, we have tried, tried, and tried!!!

The judgment—the public meltdowns, the screaming in the neighbourhood, the neighbourhood kids asking why their friend is hanging out their window, screaming that she is locked in, the arguments, yelling, and screaming that happen within earshot of anyone.

The physical pain - being hit, punched, kicked, bitten, scratched, things thrown at you. Worse still, pulling muscles trying to restrain or move them into a room for safety, which becomes increasingly difficult/impossible.

Verbal abuse- they might be young, but somewhere they learnt some bad words and hurtful sentences. Yes, you're the parent and shouldn't be intimidated, but the threats and accusations wear you down.

The defiance—flat-out resistance to everything—the emotional energy it takes to win the simple battles in life, do daily tasks, and do what it seems others take for granted.

The distress- the feeling of being overwhelmed, failure, hopelessness, anxiety (oh the anxiety), pain of watching your child struggle and not knowing how to help and your other children exposed to behaviour, abuse, and words they should never be exposed to. Watching your child have severe separation anxiety from you and feeling the guilt of wanting to bolt at any given opportunity.

The confusing advice from the professionals is that one says this, one says that, one seems to ignore the sin issue, and one ignores the extra needs.

The lack of support—you can apply, but you’re on the longest waiting list in the world and have no idea what support will look like. What resources are available anyway? It’s a jungle to navigate. I didn't expect it. Even going to extremes to find support and help, ie, a two-week traumatic hospital admission and coming out with little.

The relational strain—Navigating this with a partner is much better than not, but the reality is that you are both under great strain, which causes some friction and damage.

The expense - money for therapists, quick food (because even cooking can be difficult, especially when meltdowns and arguments happen), items for quick convenience, drywall/paint/ doors for damaged things, locks on cupboards to secure knives, sensory toys/ equipment, prescriptions, etc. Thank goodness for a government that gives a tax credit.

The exhaustion - being woken during the night or in the morning, sometimes by being screamed at and punched, the constant demand as the primary caregiver who is seen as the answer to and cause of all their problems, the emotional toil of breaking up fights, calming people down, managing everyone's emotions and your own, the physical strain of restraining, blocking and moving into a safe places, and keeping the house in reasonable shape in all the chaos.

The time—the appointments: doctors, therapists, OTs, and physiotherapists. I often joke that my life is one big appointment.

The others—you are concerned for your other children and how they will handle all the stress at home. They aren't angels either, and they can push buttons, but overall, you wonder how it will affect them in the long run. They mimic behaviour, too. Aggression gets attention, so they all take turns if the others are calm. I'm told that it is common.

The expectation—though we aren't guaranteed anything, we do expect (or hope) we will have a life that looks a certain way (especially as Christians), and when it doesn't, it feels like a failure in some way. It certainly needs time to grieve what you thought you had, but it looks very different.

The summer—‘Are you excited for the summer?’, ‘Do you have any nice plans?’ Actually, I am fearful that I am losing all my support and will have to manage it alone. Everything intensifies, and there is little break from it.

Keeping it together—it’s not pleasant having everyone know your business, and for the sake of your child, you don't want everyone to know. Keeping up appearances seems ridiculous, but it is also necessary for survival.

I will always declare and believe that God is good and keeps us afloat, but perhaps I don't express enough the trauma that having a child with extra needs can bring. I have struggled with depression, fear of being left alone with my children (and feeling ridiculous for it), and I have wondered if Jesus cares and why he is sleeping in the boat when the storm rages. I have felt angry and alone. I never doubt God is there, but maybe I am seeing it is ok to lament, grieve, and say ‘I’m not ok and this isn’t ok’, while fully believing that the joy of the Lord is my strength. It is an undercurrent that I know more than I ever have. I choose to believe there is a greater plan; God will use this and bring beauty from ashes.

To others going through this, I'm sorry if I ever judged you without understanding the daily battle. Now I get it. It's so painful. I am truly sorry! I can hear you say, ‘If only people knew. ' All I can say is that God sees you, and you are not alone.