A time to cry

It’s been a tough week.

I feel like I’m carrying a stone weight in my chest. Everything is hard. I cry often, but nothing seems to take away the pain at the centre of my being.

I know the diagnosis of autism for my son will be the best thing in the long run. It’s already helped.

But I’d kind of wrapped my head around it being ADHD. He is high functioning, and very affectionate (in an awkward, stick-insect kind of way) and I’d persuaded myself that ADHD was the answer to his rage, his argumentative streak, and the difficulties he was having in school. ADHD seemed more limited somehow, more manageable, its effects smaller (I know this is not always the case, but from my reading, children with ADHD who have high intelligence seem more able to develop coping strategies).

Autism was a shock. I still feel sometimes that it isn’t right … and then my son has a complete meltdown, screaming on the living room floor, and I know this isn’t typical 11-year-old behaviour by a long stretch.

I’m aware that I’m grieving. Tears. Denial. Anger. Depression. Yup.

I feel a little guilty saying it. I know there are children with autism who are non-verbal, who will always need full-time care, and whose successes will be things we all take for granted. I know that Son#1 has high intelligence, and is likely to be able to go to university and get a decent job. For someone with autism, he has every advantage. His prognosis is as good as it could be, in one sense.

But then I look at my family. I look at everything we’ve lost over the last 11 years. I think of the rows, the frustration, the things we’ve not been able to do because of Son#1. I know that this is going to continue now. Things are not going to get better.

I’m sad. I’m sad for me. This is not what I wanted, when I imagined motherhood. I didn’t want a child who woke me through the night until he was seven, and who still, at times, wakes me for unreasonable reasons, so that I’m often tired and irritable. I didn’t want a child who is obsessed with screens, and Sonic the Hedgehog, and who is unwilling to try new things, even things he knows he would enjoy. I didn’t want a child who has to be persuaded every night that, yes, he must do his teeth; and yes, he must wash.

I’m sad for my other children. I didn’t want family trips out to be made miserable by one child who complains the whole time because they didn’t want to come, even though if we’d stayed at home he would have been bored and miserable. I didn’t want some family trips to just not happen because the thought of going to a theme park and queuing and managing Son#1’s impatience and disappointment, as well as two other children, just felt like too much. I didn’t want family games to always be an exercise in behaviour management, and to often end in pieces being thrown across the room, and doors being slammed, because Son#1 didn’t win.

I didn’t want my desires and longings for motherhood to be slowly eroded until I feel I don’t want to do this any more.

I didn’t want to write this blog.

But you know, all this week, I’ve felt this permission in my heart, from my Father, to grieve. It’s almost like he’s sitting with me, saying, “I know. It’s ok. This isn’t how it’s meant to be.”

Because he of all people knows that this world isn’t the way it was meant to be. He sent his own Son, after all, to bear all our griefs. He has had his own heart broken too.

The book of Psalms has many songs of lament. I’ve read them often. They give words to pray when words are hard to find. Most lead us to a positive end, affirming God’s good power, and our hope that good will prevail in the end.

One ends with the sombre words, “Darkness is my closest friend”.

I’ve often returned to Psalm 88 and wondered why it ends in darkness.

I think it gives us permission to grieve when we know things are not going to get better. Son#1 is not going to get better. This will afflict him and us for the rest of his life. It may well be that I, as his mother, suffer more than him, watching him live a different life. I hope that’s the case. But he may suffer much too. He may want to get married but be unable to find someone to accept him. He may want close friends, but be unable to connect to people meaningfully. He may have close friends and lose them, because of his social ineptitude.

This is my Psalm 88. I will blog another time about hope, about God’s goodness, about the rainbows he is painting through this storm.

But right now I am sad. Right now I am angry. Right now I need to cry.

And if you are dealing with hard, hard things, know that it is ok for you to cry too. God is listening.

Not alone

My oldest son was diagnosed with autism on Tuesday.

I don’t quite know what to do with the diagnosis yet. It sits in my chest like a stone, hard, heavy, painful.

He’s been under the neuro-developmental team for 18 months, and we’ve known for at least three years that there was something going on. We’d kind of wrapped our heads around it being ADD, and felt he had some autistic traits, but because he’s doing so well academically, I suppose we had ruled out a diagnosis of autism.

And I’ve realised that I’m the kind of person that holds onto hope, however unlikely it seems. I want to believe the best, I want things to work out, sometimes to the point where I won’t accept the obvious fact that something isn’t working out.

I mean, when your 11 year old is rolling round on the living room floor, crying and screaming because you’ve told him he can’t have any more X-box, you’d think it would be obvious that something was not quite right.

Still, it’s hard to accept. He’s my son. I want the best for him. I want a happy, simple life for him, with a good job, marriage, kids.

Suddenly all those things are looking less likely, perhaps even less possible.

So I’ve come back to this blog (after a looong break) to try to process it all. I suppose I’m aware that lots of other mums are going through the same thing, and will go through it in the future. By putting my journey of acceptance out there, then perhaps I’ll help someone else.

After the meeting with the consultant, after driving my son home and picking my other kids up, and cooking tea … my first big concern was how autism would affect my son’s acceptance of Jesus and the gospel.

We’ve already encountered some problems. I mean, he has a really hard time accepting that he might be wrong, so wrapping his head around personal sinfulness might be hard. He seems to struggle to engage with the church service (we go to a more charismatic-leaning church at the moment, so emotions are high on the agenda) … he doesn’t like to sing, and just wants to draw Sonic the Hedgehog through the sermon. He also checks out during our family worship times, or cracks silly jokes and distracts his brother and sister.

Can he even become a Christian, I feared. The obstacles just seem too high for him.

Almost immediately I felt the reassurance of God. Nothing is too hard for Jesus. He has defeated death, sin, hell, Satan. Autism is no obstacle to him.

Jesus can save my son. It’s a spiritual work, not mental or emotional (though of course the Holy Spirit will transform those things as he works). And maybe my son will always struggle with aspects of church and spirituality. But Jesus has a special place in his heart for the broken, the weak.

So my first fear was laid to rest.

 

My heart for you, if you are a fellow mother, struggling to accept your child’s future, is for you to press closer to Jesus. He is so strong, so good, so kind. I know it might not feel that way right now. But he is. He will sit with you while you weep; he’ll weep with you in fact. He knows this world is not the way it should be. You are not alone.