A Hidden Path

It seems that I have had a yellow Ladybug in my life, for the last 14 or so years.  For those who don't know, a yellow ladybug is in reference to girls with Autism.  Big Miss was recently given a provisional diagnosis of Autism, at age 14.5.  Unfortunately, the actual multi-disciplinary testing cannot happen for another 18 months at least - that's how long the waiting list is.  But the Paediatrician is quite sure she has it, and to be quite frank, she does fit most of the criteria very well.

So, why did it take so long to identify Autism in my daughter?  (After all, Mr Man was picked up extremely early... not even 2 years old... and diagnosed properly at 2yrs 8 months).  Well, the thing is, Autism presents quite differently in girls.  I had often wondered, at times, if my Big Miss danced around the edges of the spectrum.  She was particular about the placement of her toys, she would colour group pencils,  she would look at people as if she had no idea what they were talking about.  She began to grow very shy.  She began to get more and more needy of support outside of home, rather than develop an age-appropriate independence.  She would fad so very intensely on things... Dora the Explorer, My Little Pony, Garfield, Pokemon, My Little Pony again and more recently, birds.  She preferred the peace and quiet of nature to the rowdy fun of a family get-together.

Can't believe I found this photo!  All the teddies lined up on the couch, around 2 years old.

Colour grouped the pencils, 'cause she felt like it; around 4.5 years old.

Going through primary school, she struggled to make friends.  She usually had one or two, but they  seemed to disappear after a few months, bored with her limited games and her confused social presentation.  She had one particular friend, longer than all the others, who had ADHD (she often gravitated to other special needs kids, and we always thought it was because of her deep compassion and understanding of special needs, thanks to having an autistic brother).  This friend's treatment of Big Miss could be considered abusive.  It was a difficult situation, because the other girl's behaviour was obviously due to her ADHD, yet my daughter was suffering and hurting because of it.  She was sworn at and told to go away.  She was clung to, invited over, invited out, and given gifts.  She was abandoned and given the silent treatment for no reason.  She was confused and upset and sad.  We moved house for a different reason, and of course, moved schools as well, and this gently brought a solution to that dilemma.

She struggled to make friends in the new school.  The class was rowdy, the teachers unable to control the room.  She hated it and struggled with the chaos and noise.  In the schoolyard, she stuck with her little sister, who was - and still is - such a source of support for her.  Her shyness got worse and worse.... still, we thought she was just painfully shy, introverted; It's just her personality, we said.  She was not interested in the same things other tweens were interested in.  Make-up?  It feels yucky on her face.  Earrings? It hurts to change them.  Pretty clothes? Uncomfortable and painful.  Party? Excitement followed by deep silence and social/emotional retreat.  Pop stars? Not interested.  She just wanted to play with her ponies in the imaginary lands she created or play Minecraft.  We didn't realise it because she masked it so well, but Big Miss's anxiety was growing and churning beneath the surface.

Miss Jane, left, 7, and Big Miss, right, 8, enjoying toffee apples under their favourite tree.

Brushing her hair was painful for her, and she hated it being cut.  I had to remind her frequently to have a shower, use her skin care products that I'd bought for her, put her dirty clothes in the wash and wear something different.  New clothes were often never worn, and when asked why, she said they were uncomfortable or hurt.  I began to get frustrated with her lack of developmental independence.  Surely I shouldn't have to brush or wash the hair of a 13 year old anymore!  I shouldn't have to coax her to take care in her appearance!  I shouldn't have to be worrying about whether she's okay, or holding back tears when we go visit family/friends (rare enough as it is!).  This is not the way normal tween/teen girls behave.  Something is wrong.

Back in Dec 2104.  Add another, oh, 8 inches or so to this, and you'd have it at about the
length we've now got.  Yip!  Not even kidding!  

One day, a post came up on my Facebook feed, about symptoms of Autism in girls.  Pretty much every one of them described my Big Miss.  The penny finally dropped.  She's not dancing around the edges of the spectrum.  She's on it.

I did some more research, and then decided to speak to her about my thoughts, and ask her to do a short screening questionnaire that I'd found on a reputable site.  More to give some tangible reason to check things out further, than anything else.  When I took her aside, and spoke to her, the response blew me away.

"Darling," I said, "I've noticed that you are feeling so anxious when we go out; and that you don't seem to be interested in the same things that other girls your age are doing.  That's ok!  You are who you are, and you are beautiful.  But I can see that you're struggling sometimes, and I am wondering if you might be on the autism spectrum - maybe Aspergers?  Obviously not as severe as your brother, but it's something I'd like to check out.  If you've got it, then we know what we need to do to get you the help you need.  And if you don't, at least we know, and then we can keep looking to figure out why you are so anxious and get the support that fits properly.  I have a short questionnaire here that can help us work out if we should look into this further... What do you think...?"

"Oh mum," she answered, "I'm so glad you said that.  I've been wondering the same thing! I feel so different to the other girls and I just can't work out why."

The questionnaire results said that a score of 30 or more indicated the likelihood of an ASD, and recommended following with a visit to a Professional.  Big Miss scored exactly 30.

Fast forward about 2 years, and we finally have a provisional diagnosis.  In that time, her anxiety got so bad, she began to self-harm without noticing.  She has developed depression as a result of her severe anxiety.  She has asked me if she could stay home from school.   She has contemplated running away from certain classes, and only the guilt of "doing a bad thing" stopped her from absconding.  She would shut herself away in her bedroom after school, crying and sleeping from the exhaustion of holding herself together all day.  I did everything within my capacity to help her...we had long (2 - 3 hour) conversations about what was happening.  We brainstormed grounding strategies for the times when anxiety attacks struck.  I emailed her teachers and the welfare coordinator to implement support at school (they've been fantastic).  I bought her fidget devices to try to channel her anxiety.  We prayed.  I prayed....

Big Miss starts intensive counselling this week with a Psychologist.  We have got the ball rolling for a formal diagnosis, but we don't need to wait for that paperwork to get her the help she needs now.  The Paediatrician has put recommendations in place, and I anticipate some intensive homework and behaviour plans to help with things.  We will need to check back in 6 months, to review progress and take a blood test, to rule out any chromosomal factors.  She is so relieved to have this label.  Finally, she can put a reason and a name to her experiences, and this has been very empowering for her.  She still struggles with school and with social anxiety, but finding some sense... some reason... for it all, has provided an important validation for her.  She has given me her consent to write here, and to tell people about all this.  She has embraced it, and is keen for people to understand why she is the way she is.

Big Miss still has dreams and ambitions.  And I intend to see them through with her.  The label has not boxed her up or limited her, it has released her.  She now has a platform to work from, a framework of reference from which she can plan her life, and launch out into the world to take hold of life, establish her goals and conquer them.  I will admit, quietly, but truthfully, I am a little bit afraid.  What if her anxiety really does get the better of her?  What if she never learns to drive, to manage university or employment?  How can she work if she can't even ask the teacher for a piece of paper? What if I have to support two adult children when I am old?  But I don't dwell on those fears.  My God can take care of it all, and as always, He's got us.  My job now is to consider the challenges, and do what is in my hands to do, with, and for, my daughter.

It seems, this whole time, I was walking a hidden path.  While Mr Man took up my time, energy and attention, there was also this little yellow Ladybug who was here the whole time. She managed to tag along, unique, but otherwise unremarkable, until now.  As with my son, nothing has changed - she is who she is, who she always has been, and I'll do what I have always done in taking care of her.  And yet, everything has changed.  It's like a whole second pathway has unlocked beside me.  Somehow, I walk the two at the same time, or perhaps they will merge in some mysterious way, as life goes on.


xx




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If you would like to know more about Autism in girls and women, please do visit the Yellow Ladybugs website, or check them out on Facebook.  This is not a sponsored post, I've linked this of my own volition because I've found this volunteer organisation to be wonderfully supportive, informative and helpful.

Strong Boy

 Erik is now 9 1/2.  Young, but not so little anymore.   I'm not such a tall lady myself... 5'2" on tippy toes... and my boy reaches well and truly up to my shoulder.  He's a skinny kid, and this has always worried me a little.  But our Paediatrician and family doctor both say he's well within normal range for his weight.  It is likely he is just following the genetic growth patterns of his father, (who turned out to be a solidly built 6'1" man by the time he was in his mid 20s), but when I see my sons ribs front and back it still freaks me out a little.

However, skinny doesn't necessarily mean weak!  This kid has a grip like a vice, and when he grabs my wrists to pull me over to some place in the house it can be really hard to break free.

Thus I found myself employing Krav Maga moves to release myself from his hug this morning, which was more like a headlock down in the arms of a 9 year old boy.  I just couldn't break free the usual way.  I'm constantly grateful that my son is not aggressive by nature, because even in his gentle interactions, he doesn't know his strength, and it seems he just doesn't have the comprehension to grasp that he needs to use a gentle pressure when dealing with his mum and sisters.

As mum to a special needs boy, there is a constant tickle at the back of my mind of how I am going to care for him when he is a grown man.  Even the tender age of 12, I have concerns for.  I try not to worry too much about this, and just take each day as it comes.  I try to remember that there is every possibility that he will change/improve/develop to a point where these things are no longer a concern.  But I can't deny the measure of progress to date has been precious little, where each teeny tiny developmental step is celebrated in a big way around here.  What if this doesn't change at all?

He fights me when I must brush his teeth.  How will brush them when he is bigger?

How will I shave him when he needs to start that?

How will I keep him off the roads when we are out and about?

How will I shower him when he is taller and more muscly than me?

Will he be using the toilet properly by then?

How will I defend myself and my daughters from his pushing at the rare times he does get frustrated?

What is going to happen when puberty hits and the hormones affect him?

The questions are always there.  Sometimes I worry, sometimes I don't.  Sometimes I feel resentful at being in this situation at all.  But most of the time, I just trust that God will take care of things, and my job is to simply do the best I can to plan for the future.

For some reason, he seems to prefer his collar turned up.  I keep finding it this way after fixing it several times during the day.  Fonzie from Happy Days anyone?

Blocking his ears in anticipation of crossing the train tracks on the way to school.  He does this every morning and afternoon, whether or not there is a train coming!

xx

Changes

In October of 2015, my life was hurled to the ground so hard that I completely crumbled.  My husband and I broke up, after just shy of 17 years married.  To say it was traumatic is a major understatement, but I won't be going into the details.  The only thing I will add is that it is 100% over and my personal recovery is still in progress.

I hope to continue blogging, but obviously there will be a new perspective now... I am a single parent, and the primary carer for all of my children, Erik included.  The details of the parenting agreement are still being fine-tuned, but on average, the children are supposed to spend every fortnight weekend and half the school holidays with their dad.  

Myself and the children continue to adjust to life as a single parent family.  The kids have been amazingly resilient and I am disgustingly proud of all of them.  Things get hectic, there is a lot on my plate and I often feel overwhelmed, but generally speaking, life has actually gone on as usual and the overwhelm is more for the emotional adjustment for me.

I'll be trying very hard to leave the emotional realities out of my posts, but due to the transparent nature of my personality, that might not always happen.  It is likely that my posts will be erratic and irregular for various reasons - too busy, too emotional, too much to say, too little to say... etc. etc.  But I'll try, because blogging here began as a way to document my journey as a special needs mum, and that's the reason I'll continue.  The beautiful thing about this blog is that it started before Erik got his official diagnosis... so the beginning really is the very beginning.  At this point in time, Erik is 9 1/2 years old.  I actually find that pretty amazing.

Lets see if I can pick this up again and carry on.....

xx