Autism + Siblings {It’s not always pretty}

Autism + Siblings

It was Miss J’s birthday a couple of days ago.  22 years.  Where on earth does the time go?

In the lead up to her dinner at a local Thai restaurant, I found myself reflecting on being a mother to her and what it was like for her to grow up in our household.

We try so hard as parents not to screw up our children.  We so desperately want them to remember their childhood with fond memories, all warm and fuzzy of what an amazing time it was.

It wasn’t for her.

Master J has autism.  We didn’t know he had autism.  We were told it was ADHD and that with proper behavioural management his unbelievable outbursts and rages would improve.  They never did.  And Miss J was usually caught in the crossfire.

Just let him watch the program he wants, Miss J

Don’t annoy him like that Miss J

For goodness sake, don’t sit in HIS chair, Miss J

Like any child on the spectrum, Master J had sensory issues.  He needed to control his environment to manage those issues.  None of us knew this.  We were just acutely aware of the rages.  Things flying across the room, walls being punched, the kicking, the biting and the screaming.  We, meaning I, would do anything to avoid it.

And Miss J copped the brunt of it.

I am still angry.  Angry that the misdiagnosis not only robbed Master J of early intervention which would have given him a much less anxiety-driven life right now, but also a better childhood than Miss J got.  She deserved so much better.

You love Master J more than me!

The words slapped me in the face.  How could she say such a thing.

You always let him have whatever he wants.  You always make me give up everything.

I denied it, of course, unable to face the reality of it.  Looking back, it was true.  Not the I loved him more than her part, that is absolutely not the case, but the part about her having to give up everything, that’s true.

Miss J has mentioned her childhood a couple of times recently.  She is dating a wonderful guy who also has a younger brother with autism.  They have been comparing notes, supporting each other in what is very often a lonely existence for siblings of children with autism.  It has clearly brought up some unresolved issues for her.

At the birthday dinner it came up again.

Mum loved you more

Damn straight, Master J responded (this is a usual response for him to a range of things)

I had to step in.

I don’t love either of you more than the other.  I love you both the same.

Nah mum, you know you love me more.  Master J said.

I don’t J, I love you both equally.

Well, it didn’t feel like it, Miss J said, he got away with everything and I got nothing.

My heart broke.  A thousand times.  I could never give back to her that was so rightfully hers.

I had a dilemma.  I wanted to deal with it, right then.  I needed to acknowledge her pain, yes, in front of everyone.  I needed to let her know that I understood.  But Master J was there too.  I didn’t want him to be left feeling like he was a bad person for what he had put her through.  But the reality was he hadn’t put her through it at all.  I had and Mr C had.

I know it was hard Miss J.  It wasn’t easy.  Dad and I did all we could to avoid Master J’s outbursts and rages and that meant you missed out on so much.  I know it affected you so much.

I felt so awful saying this in front of Master J.  I was so torn, as I always have been, between his very special needs and the very natural needs of his older sister.

The trouble is that we didn’t know that Master J had autism, we had no idea.  We had no idea how to cope and so we did the best that we could.  It wasn’t enough sometimes, but it was the best we could do.

Master J went very quiet.  Miss J just looked at me.

It just wasn’t fair Mom.

I know Angel, it wasn’t.

Mr R, the boyfriend piped in how awful it was for him too, growing up with a brother on the spectrum.  He used the word ‘horrendous’ and whilst I knew he meant it in the best possible way, to support, to show solidarity, I shuddered.  Master J by now was very quiet.

But you know, Miss J, there were a lot of good times too.  Like how you and Master J would dress him up in your outfits.  I have some wonderful photos of Master J in your dresses and even a bikini.

Burn them!!! Master J cried and we all laughed.

Plus, despite it all Miss J, you were so protective of him, loved him so much.

Still do, she said.

Dad and I should have, could have done things so much better, love.  We just weren’t armed with all the facts.

The conversation needed to end, so Mr C changed it and the evening continued as usual.

That night, at home, I worried how Master J had taken the conversation.

Did you think we were saying you were a bad person?  I asked him.

A bit.

We weren’t Master J.  You are an amazing person.  But your autism, when you were little, meant your ability to communicate was impaired.  This caused you to not be able to communicate what you needed and so you would rage.  Miss J often caught the brunt of that.  You have autism, that is a fact, but it is how Dad and I handled it that was at fault, not you.

He nods.  I know he is processing.  His self esteem is so fragile, so very fragile.  Please god do not let it be broken.

Mr C says he is going to speak to Miss J further about this.  It is clearly an issue for her and we need to let her know how very much she is loved, how we are aware that her childhood was not easy, but that as parents we did the best we could.

And that is the crux of it, isn’t it?  We try so hard to do the right thing, with the information we have to hand at the time.  When I was pregnant, feeding had to be 4 hourly and nothing else, now attachment parenting and on-demand feeding exists, with baby led weaning.  It all feels so foreign.

All we want as parents is to bring up children that are relatively happy, and able to contribute to society in a way that is meaningful for them.  I think – I hope – we have largely achieved that.

Miss J and Master J are incredibly close.  Miss J is a young mum who is fighting very hard to live life on her own terms.  They both have incredible sense of justice and cannot abide any injustice in the world.  I could not be more proud.  And since I am their mother, I am exercising my right to take some credit.

Being a parent is hard enough.  Mistakes are okay.  And it is never too late to put things right.

Much love,

SHW Signature

 

 

 

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4 thoughts on “Autism + Siblings {It’s not always pretty}

  1. Sounds like a healthy, sensitive, necessary conversation Sarah. I think it is awesome that you didn’t brush it under the carpet, and that you debriefed your son about it afterwards too. When my kids are big I want to be parenting just the way you are. Honestly. 🙂

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  2. Sarah I cannot imagine how tough this is and how crushing it feels….and I am going to sound like a horrible person here but.. it may have done your daughter substantialy more good , than Master J harm , to see Master J feel a bit hurt by your honesty. She probaby feels she has had her feelings hurt quite a bit, and maybe every occasional blue moon it may be good to stand up for her in front of Master J and let him feel a small pang of the brunt. I know it is not logica but it is pure human nature – maybe Miss J just has to get the win every now and again… and it seems like through all your work Master J will handle it.. and even if he doesn’t .. maybe he just has to handle it occasionally the same way Miss J had too? I think it was good to say what you did

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    • Hi Melinda and thank you very much for your comment.

      I hadn’t looked at it like that and to be honest, it is a little more complicated than that in that children on the spectrum have acute emotions and extremely fragile self worth, but yes, the reason I made the decision was so that Miss J would know that we acknowledge how hard it was for her growing up and that we ourselves have learned from our misguided intentions as parents, which of course we hope she will learn from too now that she is a parent. Parenting on the spectrum is difficult. There are constant choices to be made, constant juggles, constant demands and many challenges. All we can hope for at the end of the day is that we have done a good enough job.

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