Reasons to be cheerful despite my daughter finishing school

So much has happened in the past seven days, but a lot of it makes me very cheerful indeed. So here goes...


  • I began running again post op and I swear that I can run faster without being weighed down by sweaty, steamed up glasses.

It's not special needs that pregnant mums should fear

Perhaps it was the come down after Smiley's wonderful graduation ceremony on Wednesday, but Thursday felt like the pits. My daughter finishes school next week and her graduation should have been a celebration of her school years and excitement about the next stage in her life. Instead she has nowhere to go and faces an unknown and uncertain future, like many other young adults with special needs.

Thursday also marked the start of another autism group workshop with a bunch of great people: therapists, adults and their teenage children. I'm not allowed to tell you what happened, but I can tell you that it used up the entire morning, and was a replacement for the one-hour appointment that I and my son had been expecting. That used to take place in our home. This new arrangement may be efficient for the cash-strapped autism service providers, and I know that I should be grateful that my son is getting some kind of a service, but I just felt ground down by yet another drain on my time.

Why I cancelled respite and what I learned

I don't think it was the fault of the staff, I don't think it was lack of information, I don't think it was the place where she stayed. But last time that Smiley came home from respite she was clearly traumatised. And I don't say that lightly. She was only there for one night. Lots of preparations had been made, yet something went badly wrong.

She came home early on Friday morning. She wasn't her usual animated self, so I assumed that she hadn't slept well, which often happens in respite.  But she just got flatter and flatter. There were no smiles, no interest in anything, and she even bit me, which she almost never does. She also refused to eat or drink, until in desperation I gave her a large glass of chocolate milk late afternoon. Luckily that was impossible to resist. I was desperately upset for her and guilty for sending her to respite, but when it works it's wonderful for her and for us!

More meetings with her service provider followed, and it was decided to try her in respite again for a few hours and not overnight.  She was well-prepared with a a specially written social story and she seemed okay when I collected her in the evening.


We've a Dragon on the loose and a GIVEAWAY too

We're big fans of dragons in this house, but sadly my brood are more interested in really scary adult dragons, so I'm looking for a home for the charmingly named Snotlout and Hookfang, who landed unexpectedly in my porch this morning to publicise the upcoming DreamWorks Dragons series on Netflix. So I thought a giveaway would be a good plan and the details are below. But first I let the dragon out of its cage box and we had some fun...

Look what I've done!

How to feel younger when you're getting old

It's my birthday weekend, and for once I'm feeling it. And not in a good way. I'm now officially in my mid 50s, and I do not like that place at all. On Friday night I celebrated Angel's return from Tenerife and my last day in my early 50s with wine, and I'm regretting it now. It was only a couple of glasses too! It looks like me and teetotalism are going to be best buddies from now on. But perhaps that's just as well.

Sometimes I feel about 100 as I look dispassionately and without recognition at the younger me in old photos. It's not my face that's changed, it's what I do, what I think and how I feel. But I'm not ready to get old yet, and I think the key is in my head.

It seems that I've always thought this way too. Before Pinterest I used to be hoarder of bits of paper and cuttings from magazines, from pretty ideas to tart up my home (those were the days when I cared) to random articles about stuff that interested or inspired me. During a recent decluttering session I sadly chucked a huge pile of them into the recycling bin. But one or two I kept, including a tiny article from ten years ago on a talk given by a Trinity College Dublin Professor about how to keep your brain sharp as you grow older.

I read through it again, and it's a beautifully simple manifesto for ageing well:


Here's how I'm doing...

Reasons to be cheerful 18.6.15

Lots of little reasons to be cheerful after last week's major one, which I'm still celebrating.

A holiday in Tenerife


Not mine. Angel's. Delighted that she got a break. Relieved to get a text to say that she had arrived safely, and thrilled to hear the door open last night as she arrived home. And catching up with all her news this morning. Still, I wish I was there!


The pain of losing a child

I had an older brother. I never met him. I never knew him, I never saw a photo of him. All I know is that he was premature, born with spina bifida, and only lived for a few days. My parents only gave me the facts, they never told me how his death affected them or how they dealt with it. And now they are gone too and I will never know.

Unlike them I have not lost a child, though it has nearly happened more than once, and the most terrifying hour of my life was after Smiley turned blue in my arms. But I know that was only a small taste of the devastating and overwhelming emotions that must have affected my parents at the loss of their first born child. Too many friends have suffered this loss also, this pain that never really goes away.

But if the unthinkable does happen, the focus is often mostly on the child's mother, with fathers sometimes being an afterthought. So in memory of all bereaved dads, including my own, I'm supporting a campaign by Irish charity Anam Cara, which helps families who have experienced the death of a child.

10 lessons from laser eye surgery

I was doing fine until I saw the chair. It looked like a dentist's chair, except the surgeon would be operating on my eyes, instead of my teeth. This did not make me feel comfortable, in fact it made me want to run. But how could I back out now? I'd spent years thinking about laser eye surgery, and with a friend's help, I'd finally found a surgeon I liked, who was also going to do the procedure for half the normal price (May seems to be the month for discount eye surgery vouchers in Ireland).

Even two days later it is hard to remember the procedure in detail. It was very fast and my surgeon talked me through each stage, but the noise, vibration, pressure, and bright lights combined with firm instructions to stare at the lights, stay still and not talk (which is what I do when nervous) were pretty stressful, but not painful. My biggest fear was that I would cough or sneeze at the wrong moment and ruin the operation.

Afterwards a taxi was flagged down for me and, despite eyes covered in goggles and blurry from drops, I was able to text my daughter and a couple of friends without too many spelling errors. I came home and collapsed on the bed, and there I lay for a number of hours, fitfully dozing with one ear on the radio and the other on the noises floating up from the kitchen, and despite my best laid plans I did have to venture carefully down the stairs a couple of times to reassure the children. Those hours were quite painful and nauseous and sleeping through them would have been better. But soon after 10 I found myself sitting in my usual chair in the living room with Netflix for company, and I could see it! The following day the pain gradually lessened and my near vision improved so fast that I was sewing by mid afternoon, and it was easier than it had been for years.


Two days post op and I'm back driving and going to meetings and appointments, but on the downside I currently bear a passing resemblance to Miss Havisham and I can't wait for the makeup embargo to be lifted!

My superpower, and why I wish I could give it to my son

Later this week I'm getting laser surgery done on my eyes. And I'm not afraid. Once the idea of it terrified me, but these days it seems that nothing is as difficult or worrying as being an autism mum. I'm even looking forward to the six hours sleep afterwards, with someone else minding my children.

I've realised that nothing will ever scare me again as much as my daily failure to make life better for my son.

I don't think I'm a bad mum, because my girls have turned out pretty well: and there were challenges along the way with both of them. But I feel like the worst parent in the world, because I seem to be completely unable to help him to become a well-adjusted, happy, fulfilled and independent adult.

Apart from RDI, all of the advice, strategies and interventions have failed or made things worse here. And we can't progress any further with RDI as I would need to video our sessions and my son objects to that idea, understandable as he is a teenager!

But I have to keep trying, spurred on by the words of one member of his team...

Loosening the apron strings

I have an impressive filing system, even if I do say so myself. I can find gas bill from any time in the past 20 years within 5 minutes. But it's not just bills I keep, it's everything home related.

Each year I begin a new folder, and there is a section for each member of the family. It's where I put everything from school letters to medical information to stuff that might interest them. Usually they are pretty full. So it came as a big surprise to me yesterday when I opened Angel's tab for 2015. Because it was empty. No more do I deal with any of her paperwork. How did that happen? Somehow we've managed a fairly smooth transition from girlhood to adult status.

For the last 22 years I have been living in the present as much as possible, important when you're a special needs mum. Of course Angel does not have special needs, and I've mostly muddled through as her Mum between all the other stuff. I had no checklist of skills she needed to achieve, goals she had to get or information that she needed to know. Most of it just happened naturally and a a very few we're still working on, but we'll get there, we always do.

Bloom, Books and Boys

Bloom


"I'm leeeeaving on a jet plane, don't know when I'll be back again!"

"I've gotta get outta this place, if it's the last thing I ever doo."

I was giddily humming these tunes rather too loudly as I left the house with Smiley, straight after breakfast. This rarely happens. Of course it wasn't a jet plane, just my crappy Berlingo, but still it felt the same. The sense of freedom, the deserted roads (Bank Holiday Monday in Dublin) and off we went to the Phoenix Park for the Bloom Flower Festival.

It's become a regular fixture in this house, as the festival is about a lot more than flowers. In Smiley's eyes it's about being around other happy people, music, movement, lots of food to try and things to see.