Sunday, November 17, 2013

Facing Down the Tunnel

When I look back, I realize that we started this particular chapter of our journey over a year ago. Last September we took Miss K into the intake appointment for Speech and Language after a referral was placed the month before. Here we are 15 months later and the bulk of the activity has occurred in the last six months.

December 3rd.

That is our outcome appointment with with autism team that will tell us whether our little girl falls on the spectrum or not.

I'm conflicted.

On one hand, no one wants their child to have autism, but on the other hand, given her issues, her being on the spectrum means she'll be able to get support that we couldn't afford to do if we had to do it on our own. And that's huge!

She started nursery in September and it's been amazing to watch her bloom. Her language is progressing dramatically (as we expected it would), and she's participating in groups more than I have ever seen before.  She still freaks out in large groups, and new places have her throwing herself into our arms to be held pretty quickly, but she's better than she used to be.

The thing that hasn't gotten that much better is her meltdowns. There's tantrums... and then there's the meltdowns. Twenty to thirty minutes where she is raging and inconsolable- hitting, kicking, screaming and everything. It's exhausting. And scary, because the rage is directed usually at the one person who's around and telling her no and setting her off. Me.

In those moments I have to become detached, while still providing the comfort she needs and make sure she stays safe.

It's bloody hard!

In those moments it's so difficult to see my child, and it's like someone else stepped in and possessed my child. Disconcerting is one way to describe it.

I'm taking a parenting class. It's part of the Triple P program and I'm doing a level four group class. There classes are small and all of us are dealing with challenges with our children that are above the usual small child troubles.

Lots of people I know knows someone who has a child with autism or works with children with behavioural issues, but to sit in a room and share our frustrations and our loves, and feel it's okay to be at our last and final straw, well, you can't put a price on that. It's immeasurable.

And I am very grateful to have a team of people to work with us right now. Who knows what will happen after the 3rd, but currently we have her GP, her nursery workers (2 key workers plus everyone else), Speech & Language therapist (plus an assistant), Paediatrician, Occupational Therapist and possibly a Educational Psychologist. That's a lot of people!! And I'm grateful for each of them!

We have a physical next week for Miss K, and then it'll be a (in the grand scheme) short wait till the outcome meeting.

Am I nervous? Yes. But I'm also more than ready for this. We need answers and specific help and hopefully we can smooth out the more challenging wrinkles in raising our lovely, funny and bright little girl. Who just turned 4 last month! And whom I registered for school for next year already. Queue overly dramatic mommy faint...

It's been a reminder for me lately just how fleeting life can be, that moments pass before you can process them. It's ever a reminder that as much as we need to plan for the future, we need to live in the moment.

Thursday, August 29, 2013

Dodging Bullets

I've started posts and then deleted them. I've written them in my head sooooo many times I've lost count. I think there is a part of me that hasn't wanted to write it down for fear of... judgement maybe? But really, at the end of the day, the truth is that last month brought forth every fear I have about a very complicated topic:

Another baby.

I don't want one. End of story.

Well, not quite.

I have a lot of reasons for being perfectly happy with the one child we have. Health issues from my fibromyalgia for one. A couple nights poor sleep and my body rebels. I just can't do the being awake every 2-3 hours for days on end with a newborn. I can't. I will go crazy... again. And that fear of Postpartum Depression is not a small matter. I don't have the luxury of not being okay. My husband travels a lot and it's often just me and Miss K. Add a baby to the mix and I'd lose what little sanity I have left and I'm not sure about my ability to bounce back so well, even with the right medication.

We're a long way from home. 7000 kilometres from our families. I have friends here but no one who could drop things if I really needed help. They, after all, have 2 or more kids themselves. Support networks are really, really important and mine just isn't as good as it would need to be.

Then there is the whole thought of trying to conceive and carry a pregnancy that makes me feel ill. I cannot do another miscarriage. I just can't. The second was seriously devastating to our marriage and I don't want to go through that again. I realize that that is just plain fear. I accept that. I can own that emotion.

We're broke. Like barely scrapping by. We can't keep out of overdraft because we need to buy food. When choosing between maintaining good credit and eating, it's not a hard choice. We scrimp and rarely splurge on anything and it sucks because we have so many goals, so many things we want to do and experience while we're living in the UK. And we just can't. Basic needs first. Which is a drudgery that is hard to explain and rather demoralizing for a couple who feels like they should be "settled". Add a baby to this mix? And knowing that it is unlikely I could breastfeed would need formula? Are you kidding?

Then there is Miss K, whom is possibly autistic and whom I have to give 110% of my energy to just to make it through each day. Some days are good, some days are awful. She needs so much from us and I want her to have what she needs so that she can find her way in this crazy world.

But there is the one fundamental and most poignant reason to not have another baby. I don't want one. I hold newborns and older babies of friends and I smile and coo and love them to bits. But there is never a moment when I get the pang to have another one. And having had that so strongly in the first place that we tried to conceive those years ago, I know when my heart is telling me to go for it and when I should not. This is my head and heart uttering a resounding 'NO!'

For me, our family is complete. But it's been hard to tell people this, to get them to understand. I hear 'oh, you'll change your mind in a few years'. Even if that was true, my health is an overweighing concern and I have to take care of myself. My family needs me to be healthy (body and mind), and frankly, so do I.

I can answer the question 'so, is that your only one?' with a frank and happy smile and say 'yep'. She's the light of our life and makes me laugh, even when I sometimes want to cry. So is so utterly lovely and amazing to me, even on the days when motherhood feels so disheartening.

Things could be better (by a lot), but I like our family as it is. This makes sense for us, both now and in the future. We wish we could give her more somedays (especially in the way of activities to help develop some of her skills), but we're doing the best we can and we give her all the love she could possibly want.

Which is why last month brought reality crashing down around us in a very big way.

We had a pregnancy scare. Do you know how bizarre it is to say that after having such difficulty having a baby in the first place?

It's a complicated story, but suffice to say, after being so damn careful all the time, there was an oops right at my fertile part of my cycle. I was devastated at even the possibility that I could be pregnant. Angry and emotionally numb in turns. I had to stop and think for the first time in my life, could I do this? Did I have a right to go through with it if I was? How could we possibly manage? Some people would say, 'oh you just do'. But at what cost? If it would put us into true poverty, destroy my health and well being and impact my family negatively, isn't that too much? I wrestled these questions against the fact that having a viable pregnancy is a miracle for me, so if that was the case, how would I feel? For me, if I was pregnant, there was no situation that had a positive outcome. None.

10 days later (I've got short but clockwork cycles), right on time, I got my period and a negative test. I tested again about 4 days later to be sure. Negative.

For someone who had wanted positives so badly before, there was nothing less than ecstatic relief.

Deep breath.

There are things to think about, decisions that need to be made that require both my husband on I to be on the same wavelength. For now though, I can know that we dodged that bullet. And yet, it feels like it still grazed me because I think about it lots, pondering in turns what I would have chosen. I still don't know and that is the part that is difficult. It is a narrow miss that has impacted me just as much as any of my pregnancies (miscarried and successful alike) and I can't help but think it will mark me just as much.

Friday, April 5, 2013

Sweet Scent of Spring

The scent is wafting through the flat, pervasive and yet I only actively notice it here and there.

Narcissus and daffodils... is there anything more indicative of spring that can make me smile? One large bouquet is divided between two vases. A bouquet that, as is tradition in April for me, was bought to support cancer research.

Thursday, April 4, 2013

The Assessment Checklist

Spring has finally arrived here; though I should point out that it's still dipping below 0 Celsius at night. With the time change, it's light out at 8pm and after hubby gets back form this trip, I am looking forward to starting my evening runs again.

Yesterday, I met up with a couple friends and their kids and we played in the residential garden at one's townhouse. It's a concept that's quite common here in the UK, where a garden (read: fenced in green space, not necessarily with flowers) can be accessed only by the residents who live around it. My friend has a key that she needs to use to get in and out, so it's safe to let the kids run around without worrying about them getting out, and there are no dogs allowed, so no worries about dog crap in the grass where they play. There are plenty of benches, a small treed area for them to poke about and lots of grass with some hills to slide and roll down.

We took to plopping ourself on the grass and sunning ourselves and pretending it was summer while we chatted and kept an eye on the kids, who were mostly content to kick a ball around or play with the pails and shovels in the gravel walking paths.

Miss K had her hearing test yesterday. It consisted of her sitting at a small table with my behind and one of the technicians in front of her. There was a small wooden tray with holes in it and little wooden people that sat in the holes. On either side were large speakers. The game was that when she heard a tone play, she was to put a person in a hole. they played loud tones, quiet tones, middle, high and low pitched tones. They played them from different speakers too.

She passed with flying colours.

Which is a relief, but means that her issues with sound discrimination and attention are likely related to her likely autism.

But one step done and they told me it was good I got it done because Child Development would have wanted her to have it done anyway.

Yay for being ahead of the game for once!

My girl's 'thoughtful' pose...

Friday, March 22, 2013

Small Steps

The snow is coming down furiously right now, or at least it's being driven incessantly by the strong Scottish wind that prevails around here and is currently making our hovering around zero celsius temps feel several degrees colder (yay for Arctic fronts).

My desire to step out of the house today is about, oh, nil. But that's okay, there are some chores and writing I should do and Miss K is in a decent enough mood that if the snow doesn't stop and we do stay in all day, I think I can keep her occupied fairly easily.

I still feel stuck in my head a bit right now, but I'm calmer than I have been. Resigned a bit perhaps, and I know things will continue to shift (hopefully in a positive direction). I was productive yesterday and got out in the bright sunshine, pushing the stroller with my 16 kilo child up and down the crazy hills around here.

I made it to the nursery I want her to go to, and picked up an application form. The wait list is crazy, but with her extra needs and her age, she will likely get a higher priority. I've also had some reassurance that we should qualify for the 15 hours of free nursery that all Scottish residing children are entitled to from the age of three. I've assumed given our unusual tax status that we didn't qualify, but it's a statutory guarantee so it might work out after all. But I've also come to the conclusion that even if we don't qualify for funding, we will enroll her anyway and figure out the financial end one way or another. She needs the leadup to starting school. They don't have a kindergarten year here, so throwing her into P1 (grade 1) after being at home all the time would be ridiculous given her issues.

So right now it's a matter of getting the application in asap and hoping for the best. I'm hoping she'd get in for the August term, but that might be iffy, so we'll see.

All in all, it's the small pushes that are helping me sort things out. Baby steps.

Tuesday, March 19, 2013

A Few Notes to Start With

Today is a good day.

It's funny the metrics we use to measure a day, since there are a vast range of descriptors one can use to describe something as varied as a day.

There is much to say and I wasn't sure if I'd get to the point where I'd lay it all down. I mean, I've been writing blog posts in my head at an alarming speed lately but by the time I get around to trying to write them down here there are gone, lost to the minutes and hours of my day with no help from my memory.

I won't do details right now, but I will later. More and more I need to sort out the myriad of stuff going on or else lose my mind.

For now, to start with, I will give you a few bullet points:

-Over the last several months I've been noticed things about my daughter's behaviour that, for lack of a better word, aren't 'typical'. At 3.5 years old, I know 2 year olds who have a more complex vocabulary than she does. I've spoken before about the way when she melts down, she tends to react with kicking and hitting. Add to that screaming and it's not a pretty picture. But all kids this age have tantrums, right?

-Miss K had her speech assessment. She is in the words of our speech therapist, (not surprisingly) "quite delayed".

-The full report paints an interesting picture which she explained to us at the assessment: Miss K's behaviours may indicated autism. In fact at the home visit, the therapist (I'll call her JC) said that not all children who display some autistic behaviours will meet enough of the criteria to fall on the Spectrum. She can't diagnose K herself, but she does believe "it is likely" that she will meet the criteria for a diagnosis on the Spectrum.

-We've been referred to Child Development, who will look at the grand scope of her behaviour and will do the autism assessment.

-Meanwhile, we have an appointment for a hearing test on April 3rd that will help clarify my original concern about possible hearing loss.

-A block of speech therapy appointments are being set up for Miss K at home so that we can work on that side of things.

To say that I'm overwhelmed is an understatement. I, however, am not terribly surprised. There are so many small things that on their own seem like nothing, but when you add them up, paint a very different picture.

My daughter is amazing and lovely. She is also challenging. The moments where she throws herself into my arms for a hug do much to ease the frustration some days and we're working hard to figure out her triggers to make our days more calm.

There are so many resources out there and it quickly gets overwhelming, but bit by bit I'm doing my research and talking to people. Once we have all the testing done, it'll be easier to know where to start. For now, we're talking it one day at a time and trying our hardest to keep our heads above water.

Sunday, February 17, 2013

Words Before and From Me

I've been absorbed in reading books lately. Sucked in so completely that I can't put it down! I love that, thrive on it really. That the need to take in the next word, sentence, paragraph, page could be so enthralling that time slips by blissfully is truly one of the greatest simple joys in life.

But I'm also of the avid belief that reading requires a certain mood, or set of moods. Perhaps it's a range of them. All I know is that it comes and goes like the daily tides ebb and flow, making it absolutely vital to finish a book one month, and then next I couldn't be bothered.

One part of this need to read is that space of time where my own mind is quiet, where the incessant flow of thoughts are calmed and focused on one thing. Being online to read is fine but the internet holds too many distractions, pulls me in too many directions sometimes that I forget how to 'be'.

Reading is a form of meditation for me. It allows me to reflect and wonder and dream and be inspired. And that inspiration is exactly where I am right now because it sparks the need to write from a deeper place within me. It's this fact that I know is propelling me as I start to write my novel.

It's hard to eek out enough real time to write the way I want to some days, but when I do, I find myself wrapped up in the words that pour out of me. To be honest, it's a little dizzying to see it in action and it makes me wish I could be that fly on the wall who could silent and objectively observe. Just out of curiosity.

I can tell when I'm inspired, because not only do I write everything constantly in my head (which means I better get it down quick or lose it), but I feel more eloquent. I can't say myself whether my writing style changes or not, but the process feels different, less hindered.

The beauty of our modern age of technology is that even 7000 kilometres from my home and where all my boxes of books are, I can still keep up and explore reading. For Christmas I got a Kobo Glo, which I absolutely love. Sure, there's nothing like holding a book in my hands, but given my fibro, I'll take the light e-reader over a 1000 page hardcover any day. There are so many titles in my library that are the freely distributed ones that it's hard to decide what to read next. It's just as exciting to peruse my book list as it is to walk the aisles of my library or local book story, looking for something that catches my eye. It's less about the cover of the book, that letting the title capture my attention and beckon me to take a risk. A time when words can trump an image.

I mentioned in my previous blog incarnation that I am a Star Trek fan, so it should come as no surprise that I quite happily delve into those with abandon, and can freely admit that I've read two of them in the last week and was so engrossed that I end up staying up far later than I planned to or should have. Oh well, the inspiration to write that I got was well worth it.

I intend to keep this going too. Some of my other mom friends have formed a book club, which to be honest is just an excuse once a month to get together without our children and drink wine. But we did select a book (The Thirteenth Story by Diane Setterfield) and I've just starting reading the first chapter. I've only read the first page, but already my attention has been captured.

Bliss indeed.