Saturday, July 23, 2016

If I Had Known Before

Birdy has developed a new and terrifying allergic response. Previously her episodes have involved anything from mild reddening of the skin around her mouth, right up to full-on wheezing with hives, running nose and eyes, coughing - anaphylaxis in fact.

Prior to her diagnosis, she had several anaphylactic reactions - thankfully none going as far as anaphylactic shock - but I didn't realise what they were until later as her symptoms varied slightly each time and she seemed to recover relatively quickly with the blue inhaler I thankfully remembered to administer. I had never seen it before and couldn't correctly interpret what was happening. The worst was when she touched some peanut butter. She probably has a reddening of the face reaction about twice a week, but we haven't had a serious reaction since we had some allergy testing earlier in the year.

However, nearly two weeks ago and only a few days after being discharged from hospital after the 'viral wheeze' episode, she had quite a different reaction. Swelling. I don't know why she's never experienced significant swelling before but on this day she made up for it in spectacular style. If I describe what her face looked like it will sound as though I am indulging in extravagant caricature. Suffice it to say, it was extreme, sudden and horrifying to witness. And it was accompanied by lots and lots of hives. The only explanation I can come up with is that some children in the vicinity had chocolate spread. She didn't eat the chocolate spread or, as far as I know, touch it. But there we are.

Yesterday it happened again, at home, over lunch. I was quick with the anti-histamine but still had to dial 999. It's very difficult to tell whether her tongue and throat are swelling in the heat of the moment when she's screaming crying anyway, and if I wait until I am sure, it might be too late. So off to the hospital we went. Thankfully, as with the first time, it was superficial and mostly confined to her face, leaving her airways unaffected. The culprit? Houmous containing sesame seed paste. It's not on her list of confirmed allergies and she's had it a couple of times before with no ill effects but apparently that can happen.

So, now we have an epipen to add to the Salbutamol and Desloratadine toolkit (note to self: carry a large bag), and a referral back to the Immunology Department for further investigations. And I have spent a couple of days re-reading the packets in my cupboards looking for sesame-related ingredients.

I can't help feeling as though my parenting resume makes me the last person who ought to be raising a child with severe food allergies. I am a terrible cook. My idea of meal planning is rifling through cupboards at 4.45pm wondering what we can have for tea. I am, in short, distinctly laissez faire about food in general. Added to this, I have no food allergies myself and I'm not aware of anybody else in the family that does have them. My friend has a nephew who is severely allergic to many foods. I have listened to her talk about him and his family with my mouth open, barely able to imagine how they live their lives when even a glancing contact with so many foods would land him in hospital. I thought I could never cope with something like that. And now, here we are.

Before you adopt, they give you a terrifying sheaf of papers detailing a list of potential 'issues' that a child might come with, and ask you to indicate for each issue whether you would be fine with it, would possibly consider it, or would not consider it. Would you consider a child with a range of learning or physical disabilities, chronic diseases, horrifying past experiences? You have to decide about that when your own personal experience of these things may be absolutely zero. I am eternally grateful that adopting children I have fostered has meant that I have escaped this form entirely.

I am even more grateful about that now as, had I been asked whether I would be comfortable with adopting a child with a range of severe food allergies, I might have been unsure for all the reasons above. I'm not even sure if that's one of the questions, but either way, I'm glad I was never asked. Many of the things on the list would have left me unfazed, but thinking very logically about severe allergies, I might have been concerned that I would not cope very well and that frequent hospital visits would have a deleterious effect on the other children in the house (and they do!).

But I am coping. I am coping because there is no other choice. I have to become good at things that I was not previously good at. I have to change my habits and increase my vigilance in order to protect Birdy because she's not a list of symptoms on a page, she's a lively, characterful, beautiful, funny, smart, loving, human being and I love her outrageously. I can hardly imagine a day without her. I can hardly remember a time before her.

Adopting a child with medical issues also means that family medical history will always be looming over us. In all of OB's life, I have never been asked about his family medical history, which is a good thing as I know virtually nothing of it. I get asked about Birdy's all the time. She is little now and doesn't understand so I can give all the information I have (we have some relevant information in her case) without beating around the bush. I hope those questions will lessen as she gets older and the diagnosis phase of all this is completed, but if not, we may be having a lot of conversations with medical professionals where 'adopted' and 'birth mum' will be unavoidable phrases. It's just another  manifestation of the 'white noise' that accompanies adoption.

Saturday, July 16, 2016

Our Best Interests

In a rare day away from the children, I have been in York today, laughing and talking and learning with a group of other adoptive parents, kinship carers and professionals at The Open Nest's Best Interests conference.

I would love to do a thorough review of the day, but honestly, there was so much excellent and varied content that it's simply too soon to process it and get organised thoughts down on (virtual) paper. The day was filled with passionate people sharing their journeys on subjects from parenting adopted teens to transracial adoption, from forming an adopter support network from scratch to managing positive contact with birth family. We listened, we laughed and, yes, we cried. Well, I did anyway.

What I have brought away from the day is a sense that our best interests - as parents, and for our children - are not easy to quantify. I hear about the choices that other parents have made in their own family's best interests and I wonder what I will choose if and when we find ourselves in that situation. It sounds obvious to say it, but no two families, no two sets of parents, no two adopted children are the same, even though they may have similar experiences in some ways. I have a theory that because many adoptive parents have experienced being judged, they are conscious of not judging others. It's been my experience within the adoptive parenting community anyway. Maybe I've just been lucky.

So it is that we were able to listen to one parent talk about how home education was in the best interests of her family, and to another talk about how establishing a peer support network was in the best interest of hers, and hear a couple describe how promoting positive birth family contact was in the best interests of theirs, and the atmosphere was universally supportive and encouraging, even if those choices were not ones that others had previously considered. Horizons were widened, new options were presented. It's invaluable to be able to share your experiences and know that others are listening without judgement, without raising eyebrows, even if their experiences and choices have been very different.

Today has also been a welcome opportunity to connect in real life with some people I have only 'met' on social media before, and re-connect with others who I have had the opportunity to meet before, however briefly. If someone had told me a few years ago that one day I would consider people I only knew via their profile picture and Twitter handle as friends, I would have scoffed. Yet it turns out that you don't actually need to know somebody's real name or what they look like to connect through shared experience. It's a concept that my 40-something brain is gradually acclimatising to!

So, yes, a lovely day. There was a big goody bag with chocolate (which I have to admit I ate on the train home) and my children had a fabulous day with their sitters and were appropriately pleased to see me. Couldn't be better really!

I am sure there will be more far accomplished reviews of the day forthcoming from other bloggers. In the meantime, if you want to know more and you're on Twitter, search the hashtag #bestinterests. The Open Nest website is here - worth a look as they have some ace stuff going on.

Oh, and finally, those of us who are used to conferences and training involving a lot of plastic chairs and wilty sandwiches, feast your eyes on these pics of our venue . . . . it's certainly nice to be treated to a bit of pampering every now and then!

Sunday, July 10, 2016

Screen Time and Self-Esteem on a Rainy Saturday

Last Saturday, it rained all day . . . . again. So, tired of trying to fill our days with worthwhile activities, I gave in to the grey skies and declared the day a write off. Pyjamas, screen time, being lazy, eating popcorn and emphatically not attempting any Pinterest-perfect activities was to be the order of the day.

When the clock informed me that it was lunchtime, (I couldn't tell from the position of the sun as we haven't seen it for aeons) I left OB in the playroom absorbed in his current favourite video game, "Beach Buggy Racing" (or some such thing), and went off to throw together a lazy meal.

About two minutes later, he roared into the kitchen, yelling with delight. "I came fifth Mummy! I came fifth!" Well, we whooped, we high fived, we danced around like two World Cup winners. I scooped him up from the ground in a massive hug and declared him awesome, wonderful and amazing.

He came fifth, Out of six. It's not a world-beating accomplishment, but we've been playing this little game for quite a few months now, and every single other time he has raced, he has come sixth. Every single time. In fact mostly, he just repeatedly steers the little car into the wall and finishes the race two or three minutes after the computer competitors.

When we sit down to play together, I am basically his racing slave. He paints the car, customises it, upgrades it, chooses the driver and the racetrack, and then I have to race, earning coins and crystals so he can progress through the levels and get even more customisation options, cars and drivers to choose from. It works for us.

But all that time, he has been watching. OB is nothing if not visually astute. Of course, those skills don't come into play when finding lost objects, but have been marvellously employed in sharp-eyed spotting of various in-race shortcuts which are so hard to see when you're actually trying to keep the car on the track. He's got them clocked and has started pointing them out to me, revelling in his expertise and specialist knowledge. More recently he's started playing himself more, improving his co-ordination with the Firestick remote. And then came the momentous day when he didn't come last.

Now, I know, I do know that OB is not going to make a living playing computer games. I was a teacher, for goodness sake. They include that phrase in the hefty manual of teacher cliches. But when I congratulated OB for coming fifth, my delight was entirely genuine.

Like many young children, OB often falls dramatically at the first hurdle. Sticking power does not come naturally to everybody. I have allowed several pursuits to fall to the wayside, notably Story and Song sessions (kept running out of the automatic doors into the street), and gymnastics (couldn't bear the instructor touching him). There are those that I cling to in hope like the trampoline (doesn't like to be outside alone, doesn't like insects, is afraid of a cat jumping over the netting onto the trampoline), the bike (terrified of falling or being out of control) and the drums (shows much talent but won't play if he thinks anyone at all can hear him). Then there are those that I insist on despite his protestations, like swimming (over two years of torture), and reading (dissolves totally if first word in reading book is even remotely challenging).

I long for OB to experience the feeling of being successful. He has little friends who are talented at sports, who learned to read ages ago, who do drama and singing and dancing. He has begun to notice, throwing himself around the lounge and saying "I bet XYZ can't do that!" I found myself practically begging his swimming teacher to give him another badge (he has had four in two and a half years) as the children he first started lessons with are long gone and their younger siblings are now coming into the class. Progress is there, but it is infinitesimally slow.

Don't get me wrong. OB has talents. Significant ones. His painting, colouring and drawing are lovely. He has a way with K'Nex that astounds me. I look in the box and see a pile of plastic sticks - he sees a possible future car or rocket or windmill. But these, and other things, are not measurable in his eyes. I know that car he built with K'Nex is awesome, but he doesn't quite seem to believe it.

But when the screen declared that he was fifth, not sixth, for the first time ever, he knew. He had something concrete, a definite, tangible marker of progress, of success. And he was more pleased with himself than I have ever seen him. Later in the day, it got better. He came third and then second. When you come in the top three, the game rewards you with a little happy music and some shiny gold stars. And then today, a first place, and joy uninhibited.

Yes, I know it's only a computer game, and they rot your brain and are good for nothing. I know that too much screen time makes your eyes fall out and your brain turn to lard and drip out of your ears. I know all of that. But I also know that my son couldn't do something and now he can. And he didn't take the easy way of buying cheats (I'm too stingy!). He persevered and tried and practised and didn't give up, and in the end he did it by himself and was rewarded with not just shiny gold stars and plinky jingles, but with a sense of achievement that thrilled him. And if I can't find a transferable lesson in all of that then I need to check my home educating mum credentials in at the door!

Saturday, July 2, 2016

It Started with a Cough

Actually, it didn't start with a cough, it started with a slightly runny nose on Thursday morning. By 11.45 on Thursday night we were at the walk-in centre. Less than an hour later we were whizzing to A&E in an ambulance, blue lights and sirens and the full works.

Officially, Birdy was suffering from 'viral wheeze'. Unofficially she had an asthma attack, except we can't call it that because she's too young for a formal diagnosis. Her tiny lungs were squeezing, whistling and wheezing, in spasm. All her coughing and straining for breath wasn't helping. Neither was her blue salbutamol inhaler.

After two sessions with the dreaded nebuliser (she can't tolerate the mask so I have to hold the thing under her nose, following her round as she twists her head away), I sat beside her bedside throughout the night watching the monitor, listening to the alarm bleeping, and administering 10 puffs of salbutamol every hour in the hopes of getting her SATs to stay consistently over the magic 92. While she slept, relaxed, her heart rate would drop to near acceptable levels, but her SATs would fall too. When she woke, her SATs would rise, but her little heart would be racing at over 180bpm and her respiratory rate would reach upwards of 45 per minute, stomach, chest and neck straining with every breath.

To put it into context, her heart rate should be 100-150bpm, and her respiratory rate should be 25-35 per minute. SATs should be over 97.

Nobody was panicking. We weren't talking intensive care. They didn't even crack out the oxygen. I wasn't terrified, or in fear of her life. It wasn't as bad as that. Just long and tiring and unpleasant for us both. By the morning, things were looking more positive and the doctors started talking about lengthening the time between each lot of inhalers and eventually reducing the dose to 6 puffs - the maximum that I'm able to administer at home. It was borderline, but by 8.30pm they discharged us, extracting a promise that I'd be back at the first sign of trouble, and arranging for a community nurse to visit daily.

Sometimes people will say, "I don't know how you can do it as a single parent!" or something similar. I'll tell you how I can do it. I can do it because I have friends who, at 11.30 at night, will leave their own families and come to my house to kip on the sofa so that I don't have to disturb my son in the middle of the night, and then, on 3 hour's sleep, take my son to their house and look after him for the rest of the day. I can do it because I have friends who are willing to give up their whole morning in a mission to retrieve my car from the walk-in centre and bring it to the hospital so I can get us all home when it's over. I can do it because I have friends who are willing to give up their afternoon to come and sit in a hospital and watch Birdy so I can nip home and brush my teeth and pick up essential supplies; friends who are willing to pray, friends who will call, text and message words of support and love. When the rubber hits the road in single parenting, it's all about our support network. Mine is awesome.