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

 

 

 

Dear Child {Some things you should know about grief}

Dear Child,

First of all, it is important to know that grief is a part of our every day existence.  We grieve, no matter how momentarily, when we miss the train, or when we spill something on that freshly washed shirt, or when the driver in front of us is going so slowly you feel sure you could get out of your car and run past him whilst whistling the theme tune to Friends.

We grieve at these things because we expect things to go our way.  We are, as Alain de Botton so eloquently puts it, eternally optimistic about how our lives should go.  Our brains predict a certain course of action and when it doesn’t quite go according to plan, we grieve. Not of course in a life-ending “I can’t face the world” kind of way, though I have seen some people react this way, but more in a “I need to let off some steam, or cry, or yell” kind of way.

It is our acceptance of these little aggrevations that determine our ability to cope with this often frequent daily dose of grief.

But let’s shelve that for a moment.

What I would like to talk about is the kind of grief you get when you lose someone you love.

When I was 25 I lost my first husband.  You, my dear Miss 21, were just 16 months old.  There we were, my sister and I, at the cinema watching Mrs Doubtfire (have you seen that movie?  You really should, it is quite funny), when we suddenly noticed a bobbing light coming down the aisle.  I immediately recognised the stature of my dad’s body behind the usher and immediately said to my sister,

Oh my God, Dad has bought me a car.”

Because I had been wanting a car and my husband and I couldn’t afford a car and I thought it was perfectly reasonable for my dad to buy me one.

Of course, I was mistaken.  As soon as I saw Dad’s face I knew that there was no car.  Instead, my darling husband, the man I had been with since I was 14 years old, had died.  Drowned in a scuba diving accident.

My next brush with death was when, four years ago, my mom died of lung cancer.  It was just 8 weeks from diagnosis to death.  Hardly time for any of us to get ready for such a momentous thing.

These two departings have had a significant impact on the person that I am as of this date and I thought it would be good to impart to you my feelings on the subject of grief.  It is probably important to note that each person is different, and that this perspective is only my own but may be helpful to you when you get to experience the same thing.  And darlings, you will, because we all do.  It is just when that changes.

So:

  • No matter how you think you are going to react when a person dies (and we all try to imagine what we would do), it isn’t anything like that.  For instance, I did not imagine for a second that when they came to remove my mom’s body from the house that I would throw myself on her body refusing to let the undertakers close the body bag.  My brother and dad had to pry myself from her.  I imagined my sister to have this reaction, perhaps, but not myself. It is absolutely okay to react in which ever way your mind and your body see fit.  Do not fight it.  Let it happen.  It’s important to do that.
  • After the initial shock of the death and the funeral, people find it really difficult to know what to say.  They avoid the subject like the plague.  They say, “How are you?” but they don’t really want to know the truth.  They want you to be okay, which is understandable.  In our culture we don’t cope well with extreme emotion.  I have often debated about how to handle this situation.  Do I be truthful to how I am feeling, or do I protect them and their aversion to the chance of tears uncontrollable sobs.  Depending on who it is will determine how you cope with this.  On the whole, I have found honesty to be the best policy.  If I am having a crap day I say so, if not then I smile and say “I’m fine, thank you.
  • This links to the one above.  People also will expect you to “get over” the death at some point.  I do not grieve now, some 20 years later, as much for my husband as I do for my mom.  I remarried two years after he died, and that companionship I shared with him was largely filled, although I hasten to add in a completely different way (more on this below).  For most of us, however, there is only one mother.  This void can never be filled.  I have grieved that enormously.  For me, the loss of my mom has meant the loss of the person who gave me life, knew all of my faults and loved me unconditionally anyway.  It has been four years now and without warning I still cry and have some very dark days because I cannot hear her voice.  This is okay.  I know people who grieve for their parents well into their old age.  There is some belief, I think, that we should just accept and move on.  Perhaps we should and I know that many people are able to do this.  If you aren’t able to do this, that is okay.
  • If you are unfortunate enough to lose your partner and then lucky enough to find someone that you love enough to marry, do it.  Do not feel like you are betraying the departed partner.  You are not.  When I married your dad, for weeks before the wedding I had nightmares about my first husband returning and demanding that I don’t marry your dad.  It was pretty harrowing.  I was racked with guilt over the choice to marry again.  It was so silly to feel this guilt.  Why should I feel so guilty to finally find someone who would bring me so much joy and light again. 18 years later, I am so glad that I did not let my fear and guilt get in the way.
  • You may or may not shout out the dead partner’s name whilst making love to the new partner.  This is okay.  Do not beat yourself up about it.  You have had one significant other for a long time, then he/she died.  Now you have another one.  You are bound to get them mixed up in the heat of the moment.  This, I assume, will pass.
  • Grief is our way of coping with an incredible loss in our lives.  There is absolutely no time limit on when that will finish its course.  I would wager that it is never.  Time may be a great healer to some, but my experience has been one not of healing as such but the ability to move through each day with greater ease.  There is something to be said for that.
  • The loss of a loved one and the consequent grief changes you.  How can it not?  You know at that moment, when the life has eked out of your loved one, that your life will change forever.  The road on your journey of life has forked and you are now walking in a different direction.  There is no getting away from this.  Know that through grief, we do become stronger and, in my opinion, better, more compassionate people.
  • Expect to cry a lot more easily and frequently in movies.
  • Don’t be afraid to talk of the person that died.  I had a friend who cried every time I spoke of my mom.  I would comfort her and it was okay.  I still talked about her and I still do.  It is good to talk.

I think that is all for now.  It’s turning into an epic!  Just know that grief is nothing to be afraid of, ashamed of or to be shied away from.  It is a natural and healthy part of the human condition.  It means you ARE human.  And when you grieve for someone so greatly, it means that you have been extraordinarily lucky.  For you got to experience the kind of love that elicited that grief and, my dear darling children, that is a rare gift indeed.

From my heart to yours,

Mum/Gogo