Learning to be resourceful….and brave.

I’m not into New Years resolutions but this year I decided to make one. Not so much a quit this or start that type…more of a quiet mantra that I will return to as the year goes on. This year I want to be resourceful and brave. Because this year I will need to be. There’s a reason I haven’t written for months and I guess I just didn’t know where to start. You see, Mick and I have decided to separate.

It’s mutual, amicable and will be for the best in the long run but here’s the thing…it’s not particularly something that I want to write about because it’s personal and private but it will change how I do everything from now on….including my writing, my parenting and my ability to support myself and Wade. So even though it’s private, it’s kind of relevant to this blog and I’ve been at a loss to work out how to write from now on and still keep some of me for me if you know what I mean. I will answer the obvious question though….it’s not because Wade has Down syndrome. If anything, I think that is helping us stay good to each other during this process.

So, while the details of why we are separating are irrelevant here, I think the range of emotions and feelings I have been experiencing as I go through it reminds me of the feelings I was going through when I was pregnant with Wade. The similarities are so strong that it has given me a new perspective and a new understanding of what it means to face challenges and how useful sad and overwhelming emotions can actually be.

Behave…everyone is looking at you.

I was in the supermarket the other day and I saw a woman up ahead with a child in the trolley. The child was about 2yo and was crying.

“Look around…” the mother said, “… you’re the only one crying here…”

I am not judging this woman. I understand that there is often A LOT going on in the lives of others that bubbles up to the surface and comes out as frustration when someone is at the end of their tether….

….it’s just that I hear this kind of thing a lot.

It takes many shapes and forms;

“Behave!, everyone is looking at you”
“Don’t do that, you’re embarrassing me”
“Don’t wear that, it will make you look fat/skinny/daggy/whatever….”
“None of the other kids are being as naughty as you”

It always gets me thinking…. People are often terrified of what complete strangers think of them. It is so common for parents feel embarrassed by their kid’s behaviour in public or use the spectre of public humiliation to encourage better behaviour from their kids. Whenever I hear something like this, I find myself asking the question….

When the wheels fall off…in public…

I met a group of mums not too long ago who all have kids a bit older than Wade. As we were talking, a few mentioned how the feelings of grief that some have after diagnosis can reappear at different times, usually around transition times as our kids move from one stage of development to another, like starting school. On an intellectual level, I felt strange about this. In my mind, I have already dealt with the feelings I had around the time of diagnosis. I know that my fears were mostly misplaced and I am so truly in love with who Wade is. I don’t feel like I have lost anything by having Wade. But the more I thought about it, the more I realised this is exactly what has been happening to me over the past few months.

As Wade is getting older, the developmental gap between him and his peers is getting larger. My logical brain tells me that this is ok. I know he doesn’t need fixing or to be made “normal”. I know his value is the same as everyone else regardless of his achievements but as a parent, the universal feeling of not doing enough is a monkey on my back.

I want full inclusion for Wade. I see it as an important goal and one that is not only possible but worth fighting for. The problem is…as Wade is getting older and becoming more of his own person with his own strengths and weaknesses, I am starting to ask myself whether my desire for him to be included in any and every facet of life, is more about me than about him. Trying to balance the concept of “the more I put into Wade’s development the better off he will be” versus “the more I embrace and nurture him for who he is the better off he will be” has been driving me crazy.

Selling Down syndrome.

I am Wade’s mum but I am his advocate too. I made a conscious decision when he was born, to presume that he can do anything. Not for one second will I think, “he has Down syndrome so he won’t be able to do that”. I will not think to myself, well, I won’t bother teaching him world politics, for example, because he will never understand it anyway. If it becomes abundantly clear that something is beyond him or not of interest to him or he is physically incapable of it, then I will strike it off the list….but not before. I’m sure this sounds delusional and to be clear, this does not mean I have him on a strict regime of study so that he will become a Rhodes scholar come hell or high water…. What it does mean, is that if he wants to play a sport or learn an instrument or study at university or live independently or get married or work in a shop or run his own business or travel the world or drive a car or anything, I will help him do it to the best of HIS abilities, not to the best of society’s expectations. That is the difference.

Lately though, I have come across an unintended consequence of my enthusiastic advocacy….

Childcare: or Giving with one hand and taking with another

A little while ago, Wade’s physio suggested that he might benefit from a day a week at childcare. The idea being he would get a bit of extra stimulation and spend some more intensive time with other kids. It would also give me a day to myself and he might get used to being away from me for more than an hour or two. Seemed like a great idea! She would come with me to help me pick a place which was great. I hadn’t considered childcare previously so I’d spent no time researching it. I had no idea what to look for in a centre.

We dropped in to a local centre to get the ball rolling but it was awful. My mind was swimming with all the horror stories I’d heard from other local mums about having to look at 20 or so childcare centres to find anything half decent. I compiled a list of nearby places and did a bit of ringing around. I didn’t know how inclusive your average childcare centre is so I put on my advocacy hat and got ready to leap to the defence of my boy, only to find that most places were completely unfazed by the prospect of caring for a child with Down syndrome which was reassuring, except for one….

Writing and working…(and worrying unnecessarily)

It’s been a month or so since I last wrote here, and what a month it has been. I started writing here 6months ago for two reasons.

One….to write.

I have always wanted to write, but never had anything to say. In the past, my writing read exactly like you would expect from someone who sat down with a clean white writing journal, freshly bought “writing pen”, probably a glass of wine or cup of coffee, perfectly positioned ashtray and pack of rollies (as was my want back in the day….).

All the gear but no idea.

I would set myself up to write aaaand……nothing……just contrived, scripted crap that was painful to read back. Now I can write because have something to say, something I actually want to share. Something I believe in and believe that it needs to be shared. I write to answer the secret questions people have about my life but never feel comfortable to ask. I write to demystify, to normalise, to make it ok to talk to me about this stuff because it just is what it is…. I write to make sure Wade lives in a more understanding and compassionate world because people know more about what Down syndrome is.

The second reason I write, is to help others who are starting on a similar path to us.

Sleep and other Nightmares

Our honeymoon period is officially over. Up until recently, Wade has been dream baby, day and night. Sleeping was his forte. It was always fun to freak out visitors when I went to put Wade down for a sleep. I would return after a couple of minutes and he was already asleep. No screaming, no yelling, no tears. It was a pretty cool party trick.
During the day, his naps would last for about an hour and he woke up smiling.
At night he was out by 7pm and the evenings were our own. Usually he would wake up a couple of times overnight but we could usually settle him easily.
Yep, I was that annoying mother with the bewildered look on her face during conversations about what to do with screaming, inconsolable children.

“I don’t know, we just don’t have that problem!”

Then it all changed…. Slowly and gradually, it crept up on us. I can’t really remember the moment when my little piece of paradise began to crack and drift free. Maybe he had a cold and was a bit restless or maybe one of us just didn’t have the patience to go back in there during the night. Somehow though, Wade got wise to us. He worked out that if he cried during the night, we would bolt in there convinced that something diabolical must be wrong. He worked out that if he didn’t take the dummy or wouldn’t settle, we would pick him up and cuddle him. He cottoned on to the fact that if, (after laughing in our faces at the idiots we were for falling for this trick), we decided to put him him back in the cot, he would up the ante using real tears. (I’m not making this up, he actually laughs)

Milestone Junkie

As with every other aspect of my parenting story so far, Wade’s developmental delay has me swinging wildly from graciously understanding the reasons why everything takes longer to learn, to tearing my hair out over why he can do some things easily and not others.

Kids with Down Syndrome are usually characterised by some degree of developmental delay. When they are older, this is usually known as an Intellectual Disability. The reason for this is an Intellectual Disability is a specific, clinical term that is determined by an IQ test. When children are not old enough to be formally assessed this way, they are known to have developmental delay. Developmental delay means that our children can learn and can develop along the usual trajectory but everything takes longer to learn and often requires some specialist help along the way. This usually affects all aspect of development including the physical, the cognitive and the intellectual.

Before Wade was born, I remember being shocked at the approximate ages that children with DS achieve physical milestones. I couldn’t imagine a 9 month old unable to sit up or a 2-3year old unable to walk. It completely floored me. Like a lot of things I read during that time, this kind of information is general and each child develops completely differently. Wade, for example, came out of the gates racing. His gross motor skills were quite good. He has low muscle tone but he was quite strong and active. I would put him on his back and he would kick his legs about and wave his arms. It didn’t take that long for him to lift his head during tummy time and other DS parents and medical specialists were very encouraging about how well he was doing early on. This is when you get your first taste of that tempting, intoxicating parenting drug….praise. You get a high, you feel fantastic. Nothing gets better than this.

The Cynic V The Anxious Wreck: a war story

From the day Wade was born, I have been waging an internal war about how to manage the competing feelings of wanting to do the best for him, yet not wanting to get sucked in to the heaving pile of guilt-laden extra “stuff” that society makes you feel utterly compelled to do for your child, whether they need it or not.

In the past, I have struggled with anxiety. Snowballing worries and being paralysed by indecision usually topped the list of how it manifested. The great paradoxical irony being that, before I met Mick and had Wade, the consequences of bad decisions were fairly minimal but the anxiety levels were pretty high. There was only me to worry about yet I found it extremely hard to move forward when there was no clear path or there were too many pros and cons to manage. Now, even though there is much more at stake, I find it much easier to manage the anxiety and make clear decisions. The turning point for me came well before Wade though, at the police academy, where I learned that when faced with an unfamiliar situation, you have to make a decision and do SOMETHING. Walking away is not an option because when you are standing there in the blue uniform, everyone is looking to you to fix the problem and even though you might not know the absolute best course of action to take, you have to back yourself and pick one.

It was the greatest lesson I ever learned.