Tuesday, March 4, 2014

Understanding

Erik is the third of four children.  He has two older sisters, and one younger.  When he was born, my older girls were five and 3.5 yrs.  The little one was born when Erik was two.  Erik was diagnosed properly sometime around 2.5 years old, but we knew something was up when he was 21 months.  So I was already pregnant with Baby Miss at the time.  I hope this is not too confusing... the timeline might help paint a clearer picture...

---->  Erik born:  Big Miss - almost 5 yrs;  Miss Jane - 3.5 yrs

     ---->  21 months:    MCH points out that something is wrong.  Already 18 wks pregnant with Baby Miss.

        ---->  2 yrs 1.5 months:  Baby Miss is born; Big Miss - almost 7 yrs; Miss Jane - 5.5 yrs.

            ---->  2 yrs 7 months:   Formal diagnosis received.  Big Miss - 7 yrs, Miss Jane - 6 yrs, Baby Miss - 5.5 ms.

                ---->  Presently:  Big Miss -11.5 yrs; Miss Jane - 10 yrs; Mr Man - 6.5 yrs;  Baby Miss  - 4.5 yrs.

...or it might just add to the confusion!


Anyway, sometime along the way, the older girls came to understand that their little brother had Autism.  At some point, they grew into a realisation of what that actually meant.  I don't know when this happened, and I don't really know how this happened either.  I guess it was just a journey in getting to know him, as you would with any new baby.

Erik's first birthday.  Well before we had any idea that something was amiss, but the
signs were already there.

At times, I still feel sad for them, because they were so excited about a new sibling.  They were old enough to understand how cute babies are, how they cry and sleep, how they learn to eat and babble and walk.  But they didn't get much of this with Erik.  He hardly responded to them, and so, although they loved him, they didn't interact with him as much as I expected.  But they were ok, they had each other.  I just felt sad because I felt that they missed out on all those wonderful things that happen when a baby enters the family.  

But then, Baby Miss came along.  The girls were older again - seven and nearly six respectively - and everything we had hoped for but not found in Erik, we found in Isobelle.  The girls adored her.  There was cuddles and giggles and sharing of toys.  There was feeding and snuggles and delight at her cute antics.  It was just so different to Erik.  So terribly bittersweet.

This is what you get when you get a 7 year old
to feed a 7 month old. 
Always loved hugs with her big sister.

video
"Bye 'Sha, bye 'La" ...but my sweet boy is more interested in trying to lick his jacket.


Baby Miss was like a balm to my soul after the pain and grief of an AD diagnosis.  We watched her like a Hawk:  Is she responding?  Is there shared attention?  Smiles? Reaching?  Babbling?  Interest in family?  Pretend play?  Imitation?  She was a delight, but my heart was already changed after Erik's diagnosis.  It was so hard to just relax and enjoy my baby, even though I tried not to fret.

Baby Miss is 4.5 now.  She is the only one here who came into the family with an awareness of special needs already present among us.  It is all completely normal for her, from day one, and she doesn't know any different.  But she does have trouble understanding some things...

To a four year old, bigger kids are smarter.  They are more capable.  They do cool stuff - you want to be like them!  Baby Miss adores her sisters, she really idolises them.  She adores her brother too, but struggles to understand why, when she copies him, she gets into trouble but he doesn't.   Why is it that she gets in trouble when she stands on the table, but for Erik, we just quietly get him down?  Why is it that she gets in trouble if she gets out of bed to play, but we just quietly put Erik back?  Why is it that she is often left to manage eating her dinner by herself when she is tired, when Erik is tended to very closely?  It's not fair!  She is little and needs help!  She gets that he cannot speak or use the toilet, but she doesn't understand why.  She just can't seem to understand, that he doesn't understand a lot of stuff. 

The older girls from time to time have struggled with this too; that Erik seems to get away with so much, where they would have got into trouble.  It hurts them that mum can't do much to defend them when he is being annoying, and that they have to be patient of his more frustrating characteristics.  To be made to endure such injustices is a big thing to ask of children, even if they do have the capacity to understand why.  It is hard for them, and my heart breaks over the whole situation.

Trying to see the dinosaur display at our local shopping centre, but Erik was screaming and
crying the whole time, because he wanted to visit the playground instead.  It was a frustrating day,
but my girls are still smiling and trying to comfort their brother.

I know that out of this, they are learning patience, tolerance, grace and insight to the peculiar workings around special needs.  But oh, it is a hard lesson for them to be learning.  One day, it will all become clearer to them, and I trust that they won't hold these occasions against me.  I sometimes console myself by looking to the future, and knowing that I will have strong and caring daughters, who are not perturbed or intimidated by people who look or behave differently; resilient young women who already have the advantage of a skill-set unique to those who experience life with special needs.

And eventually, I'm sure that Baby Miss will get it too.  But in her very sweet four-year-old mind, all she knows right now is that "Erik doesn't learn things very easily" - her words to one of her dad's Army colleagues.  And I find that for all that she doesn't understand, she seems to have a rather decent grasp on the situation overall.




xx


PS:  I know I don't have a great deal of readers to this blog, and that's ok.  But if you or someone you know can share how your kids came to learn about their siblings' Autism, I would love to hear about it!

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