#specialneedsmum

I couldn’t write everything I wanted to you, I wouldn’t know where to begin and I know our experiences are different, plus we’re at different stages of those journeys. I wish I knew the right things to say and I wish I could take your pain away, I thought I’d be better at this than I am… you know, seen as I have a vulnerable child too. Truth is, I wish I could protect everyone from going through the pain and heartache we have. I guess that’s what makes it harder, I understand, and I know there are no words and I know how frustrated I sometimes get when people try to find the right ones but say the wrong.

Instead I would like to share something, I hope you find in beneficial.

This is Holland by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

When you have a non verbal child, life is just that bit harder. Sophia has never called me mum. She can’t tell me when she is happy, sad, scared, angry, tired, hungry or feeling sick.

Over the years I have learnt to identify a number of physical cues from Sophia which give me some idea on how she is feeling. For example, when she is happy, she flaps her little hands and rocks back and forward. When she is angry with her little brother she gives him what I refer to as an ‘extreme hongi,’ where she pushes her nose into his hand or forehead so much her head shakes! When she is unsure of something new, she sniffs it. However, a lot of it is guess work. I have got quite good at picking up when Sophia had an ear infection just by the pitch of her crying.

As she has got older, she has formed a few important words for her most in demand items. These include ‘Ipat’ (her favourite electronic device) and Ah-kwee (Ice Cream).

In June 2011 following Sophia’s diagnosis, I was a mess. My emotional self was literally closing down. Pain and confusion pulsed through my body constantly. Over the following 8 days, I put pen to paper. Day by day I released the poison in the best way I knew how. I then folded the page up and filed it away for another time when I had hopefully found a little more peace and clarity. As if by fate, I found it last week, the week I started my blog. I am obviously supposed to share it now, so I have typed it out for you all in its unedited, raw, entirety. It makes me sad to see how lost I was, but proud as to far I have come.

Day 1. Home from the doctors Apprehension/Fear/Relief/More fear. Brain racing. Brain fog. Out of body. Raw. Gutted. Terror of that ‘A’ word Tentative acceptance on a physical level. Fear of disappointing my mum and disappointing those who love Sophia the most. Fears for Sophia’s future - Will she be ok? Marry? Children? Flatting? OE? All that I knew for certain is out the window. Feeling wobbly. I’m not comfortable being alone with my thoughts today. Internet is not my friend! Knowledge is power that can wait for tomorrow.

Day 2. No entries. Just hanging on.

Day 3. I’m back Time to be proactive? Denial. Put emotions away for the day. Use that ‘A’ word with ‘mild’ in front of it always. Like lipstick on a pig. A day for mourning - for lost potential, for hope for the future. CAPPED POTENTIAL. Reality sucks, IT IS WHAT IT IS (clutching at straws?) I can’t give up on my daughter. It is what it is, but I can’t accept that a diagnosis seals my baby’s fate. Destiny give me my hope back! Increasingly uncomfortable with quiet, still moments. My thoughts and inner monologue make my heart palpitate.. Ignorance is bliss… Give me back last week. Now we have a diagnosis, what do we do with it? Lost, lost lost. Can’t give up. Searching for some sort of vindication. My daughter, the diagnosis. Caught up in words, terms and medical gobbeldygook.

In walks my daughter and she gave me a bear hug around my legs. I love you Sophia Grace.

The bureaucracy begins. Who to believe? Books? specialists? Find our own truth. Read a book. Burn the book. Write my own book. Re-find my daughter on my own terms in my own time.

Day 4. Up and Down. Anger. Raw deal. Why me? Guilt. Karma? Guilt. Anguish. Beginning of acceptance. Touched by family and friends response. Determination. Strength? Education. Rain. Relationships. Stress. “I didn’t sign up for this,” GUILT. Bold and underlined. Distraction please. Lonely. Isolated. I miss my mum

Day 5. Cornered by emotion Should be feeling better. I just feel angry. Lashing out. Ran away! Wandering the streets just wanting to feel normal. Overwhelmed, sad, woeful. Desperate. Shutting down.

Day 6. Breaking point Mum visited. Tried to be strong but I broke down. Powerful moment. Outpouring of grief, fears, confusion, sadness. Cathartic. Release. Light now, floating with the breeze. Not afraid of my own thoughts or silence any more. Love my mum :)

Day 7. New Woke up, refreshed. Have turned a corner. Not feeling ‘wobbly’ any more. Clear, less fuzzy head and thoughts. Time to face facts. I am no longer just a mum. I am also my daughters advocate/mouthpiece/no.1 fan. Went to playgroup. Normal?

It’s a funny thing, in no shape or form am I in denial about Sophia’s autism. My personal mantra for this whole adventure is simply ‘it is what it is.’ I accept her differences wholeheartedly and focus on what she can do, not what she can’t.

However, when the note came home from school that class photos were tomorrow, I prayed for the unimaginable.

“Please god let Sophia look normal.”

Embarrassingly, I wanted to be able to have in my possession a snapshot of my daughter showing off her thick, wavy hair, deep brown eyes framed by long eyelashes and infectious smile. A beautiful image of my visually perfect daughter minus the flapping, rocking and screaming.

Effectively, I wanted to photoshop her of her autism.

After five years of having to keep silent while other mums around me competed for bragging rights on whose child was crawling, walking, talking etc first, I knew I could finally enter the race if I had a lovely photo in my wallet of Sophia looking happy and, well, normal. If only she would sit still for a second and flash that beautiful smile I know and love. For a moment I could be a normal mum. How pathetic and superficial is that? Very. I feel terribly guilty admitting this, but guilt is an emotion I am getting used to as a parent.

Here is a list of my current sources of guilt

1.Regularly having to put Sophia’s needs before those of my 3 year old son, and also my much ignored husband 2.Causing upset to close family and friends when I need to vent about problems we are having with Sophia 3.Causing upset to strangers when Sophia has a meltdown in public 4.Regularly turning down kind invites to fun events like kids birthday parties because I don’t want Sophia to make a scene 5.Not keeping in contact as well as I should with close friends who make the effort to keep us in their plans. One day I’m sure they will give up on me and I won’t blame them! 6. Am I doing enough for Sophia? Is the reason why she still isn’t talking because of something I am/am not doing? 7.Are those conspiracy theorists right? Did immunisations/diet/environmental factors cause her autism?

In the end, Sophia did smile for the camera. Her first class photo was absolutely gorgeous. Not a sign of autism to be seen. It was duly framed and hung on the wall in pride of place. Unfortunately, because of the hours of stressing by yours truly in the lead up to photo day, every time I look at it, the only emotion I feel is… well, you can add it to the above list.

I used to love doing the weekly grocery shop. Hand-picking all the best fruit, cashing in on crazy coupon deals, sneaking in a packet (or two) of tim tams and daydreaming about that first chocolate biscuitey hit as you wait in the check out queue. It was a part of our household weekly routine I really looked forward to. Sophia enjoyed sitting in the trolley as long as she had a lollipop or chippies to keep her happy.

As she got older and our family routine evolved we ended up doing shopping while she was at kindy, so for a time it was not part of her routine, but no harm done, right? Wrong. As I was to find out in the school holidays just past.

One happy December morning, I decided to do a bit of pre-christmas goody shopping. However, Sophia had other ideas. She refused to enter the local supermarket. She cowered behind me at the sight of it like I was taking her to some terrible place. I persevered with a reassuring hug, which was met with bloodcurdling screams and tears. We returned home, where she quickly reverted to my happy go lucky girl.

It took several weeks of walking the exact same route to the supermarket, firstly walking past it without stopping. Eventually she allowed us to stop outside the shop if I gave her a chocolate fish, all the time gripping my hand for reassurance.

One day out of the blue she dropped my hand and walked straight in to the supermarket like it was no big deal! As you can imagine, we bought every treat she picked up so she would remember the experience favourably for next time. Since then I have had minimal problems getting her to go inside the supermarket. For her it seems to be about consistency. So, now even on the days when we don’t need groceries we go in there (generally at the start of the day when there aren’t many shoppers around) and she gleefully runs up and down the aisles stopping only to look at the iced birthday ‘cakies’ and again in the pets aisle once to pick up and smell the birdseed and fish food!

She still refuses to go to another supermarket in our area. The screaming starts as soon as she senses we are turning off the main road into its carpark. She hasn’t been there many times, but the last time was on a really busy Saturday afternoon. It was a gala day and there was music blaring from loud speakers into the carpark, that was enough to tip off a massive meltdown without even stepping foot into the supermarket!

Sure the Supermarket music selection and the bruised produce might get you a bit hot under the collar on occasion, but to autistic children, this sort of environment can cause great anxiety. The fluorescent lighting, cool blowing air from the deep freeze, squeaky trolley wheels, not to mention the crowds of people can be really distressing.

Have you ever seen a child wearing sunglasses and/or headphones at the supermarket? They might be autistic. All this visual and aural stimulation, let alone being away from their home comforts can cause an overload which is very distressing. Some children feel actual physical pain from the harsh lighting. Isn’t that horrible? Some children will tolerate such environments if you bring something familiar with them (god bless the Ipad) that they can put their focus on to.