Thursday, 28 January 2016

A Lost Pip....

Today I lost Pip for about 5 minutes. 

We were watching Katie's swimming lesson at the pool and one of the mum's from school popped over to say hello just as Katie's lesson was finishing and it was time to go down from the viewing area to meet her in the changing rooms. Pip, who, was restless after half an hour of staying in one vicinity and has been a bit of a pickle just lately with running ahead and not stopping, started walking off down the viewing area towards the stairs. I called him back but he continued walking on and disappeared around the corner. I grabbed our bags, said goodbye and speeded after him expecting that he would just be looking at the little pool from the window there. 

There was no Pip anywhere to be seen. 

I called him loudly. Years of parenting Katie has enabled me to shout loudly when required (not a fact I'm proud of but most parents can embrace their inner fishwife when required I'm sure).

No reply. No shuffling of size 10 feet. Nothing.


I span around, sweeping the area visually with panic forming in my stomach.

No sign of him.


I raced downstairs. My instinct was that he'd gone back to the poolside to meet Katie but what if I was wrong?

At the bottom of the stairs in the reception desk. I saw the swimming coordinator and asked if a little boy had come down the stairs wearing a red jacket. I quickly gave a description of him and the rest of his clothes including his Spider-Man trainers and she put an emergency alert out to all staff for him. 

Staff appeared from everywhere. Within seconds the doors were manned and staff were looking for him.

I'm not sure I can articulate the fear and panic that I felt. Was this really happening?

Giving an impression of someone calm(ish) I told the swimming coordinator that I was going to quickly check by the changing rooms to see if he was there. 

I rushed frantically to the changing rooms, wildly calling his name.

I turned the corner to the pool entrance and there was Pip standing looking very nonplussed and relaxed in his orange hoodie (not a red coat) and actually rather pleased with himself for finding the poolside to wait for Katie. Although my instinct was correct as to where he'd been headed and I'm secretly a little bit proud of him for finding the way unaided, I was still flabbergasted that he'd managed to get there so fast. 

I rushed over to him and gave him a "panicked and relieved all at the same time" ticking off before hugging him and explaining to him that I was scared that I'd lost him. I was also suddenly feeling an utter numpty for forgetting he wasn't wearing his red coat and I'd given the wrong description to the swimming coordinator. What sort of mother forgets what her child was wearing? He had been wearing the red coat all day in my defence and I'd left it in the car because we'd managed to park so close to the leisure centre entrance for once. What if he hadn't been there and had gone past the staff because I'd given the wrong description? It doesn't bear thinking about. 

My mind was awhirl with fear and relief and panic and delight and embarrassment.

"I sorry Mummy" he said with a sweet little face, interrupting my thoughts, and my panicked heart melted. I hugged him tightly again.

We quickly raced back to the reception staff to let them know he was safe and to explain my new numpty status and apologise for being such a plonker and rushed back to meet Katie.

Katie gave him a telling off as well once I'd recounted the story to her although that is a case of the pot calling the kettle black because it wasn't that long ago she gave me the slip in the egg aisle Asda (I'm an observant mum I promise. I just have two children who think they can go where the mood takes them). I saw her give him a sneaky cuddle though when she was getting changed and suspect she really does care for the little monkey, even if she does continually call him a "Nut burger". 

Because Pip has made a habit of running off just lately, and I have to keep checking with him whether his ears are working, I've told him he's back on his reins now until he learns to stay with me. 

What a scare! Thankfully it proved my instincts about my son's intentions were strong but also proved just how much ground he can cover in a very short space of time. 

Usain Bolt beware.......

Sunday, 17 January 2016

If I Were a Child

I feel like I missed a lot of my childhood. I can't remember much of it at all. Not remembering was my defence against things I'd much rather not remember. The only trouble with that is now my brain is well and truly trained not to remember things, well except the words to songs. I can tell you the words to most songs I have heard.  It's interesting that these are what I can remember because I used to sing in my head to blank out things that were happening when I was a child. 

Singing was always my greatest love as a child and still is as an adult. It was my expression and it was my protector.  If I was a child growing up in a different life and in a different time I would sing with joy. I would let my heart fill with the joy of music and sing for the world to hear. I would sing to the breeze and sing to sun, moon and stars. The music would bubble up inside me and froth over with the excitement that the sounds and words can bring. I would open my arms wide, spin and laugh, sing and be free in a very Maria in the Sound of Music sort of way.

I wouldn't be scared to do that if I were a child again. I wouldn't let other people put me down. I wouldn't care. I would share the music of the birds in the trees. I would share the joy that is all around. It would be easy to do so because I could feel that joy uninhibited by the sadness and fear that I felt when I was a child. I would let my voice ring out all the love I have inside me. 

That's what I would do if I were a child.

This post was inspired by this week's #WASO title at the Adoption Social. Pop over and have a read.

Saturday, 16 January 2016

In the still of the night.....

There's something soothing about being the only one awake in the house in the middle of the night. Well, when I say "the only one" what I technically mean is that I'm sitting in Pip's room trying to get him back to sleep after I accidentally woke him whilst putting his duvet back over him.

As I tiptoed out of the room his little head popped up and a voice said "Don't go mummy".

My heart just melted. I could read so much into those words. 

"Don't go mummy"

I'm possibly reading more into those words because I'm currently reading The Primal Wound by Nancy Ferrier. It's a book that is literally ripping my heart out from my chest both with enormous sadness for my children but also for myself as I open up my heart to feel the loss of my own mother and our estranged relationship in order to fully understand the loss of the bond my children have had with their birth mother. I've had to put the book down over the past week to spend a little time understanding my reaction to the book and to settle my heart again.

When I hear my son sleepily yet urgently saying "Don't go mummy" in the middle of the night my heart breaks a little because I know he needs me close to feel safe enough to go to sleep. Is he really asking me not to go or is his sleepy heart calling longingly for a mother he knew only for a short time? I expect it's a little of both. 

If you met Pip you'd probably think he's mostly unaffected by his early loss and adoption . He's happy and smiley and full of cheekiness and mischief. He's well attached and loving. He's fun to spend time with. He loves tinkering with things and will happily play with his toy kitchen or tool set keeping himself busy. He's bright and very switched on. His speech has caught up now and he can count and do all the things regular 3 year olds can do.

There are little things that I know though, like the fact that he's started speaking in baby speak when I change his nappy partly because we've moved house and partly (I suspect) because I've been talking to him about saying goodbye to his nappies. Part of him wants to be a big boy but conversely he tearfully told me last week he doesn't want to be a big boy and he wants to be a baby and stay in nappies. Pip has always felt younger than most of his peers. He's growing up fast and gaining independence but he's very much a baby still. I feel he needs to be babied for a while longer so I'm not going to argue with him. We'll try the nappies again in a few months time when the weather is warmer. He's taking little steps to emotional independence so I feel confident he'll get there in his own time. Over the past week he's slept all night in his own bed nearly every night. This is a major step forward after nearly 18 months of creeping into our bed in the middle of the night for cuddles. To me this shows he's feeling more secure and sleeping more soundly (except tonight when the mere act of pulling the covers over him was sufficient to wake him). I'm enjoying some better quality sleep as well.

So do I mind sitting on the chair in his room in the still of the night listening to him breathe and yawn every now and again and making little huffing sounds like he's holding his breath for a second? Not at all. I'd like to be doing the same in my bed and I will admit I'm now getting a bit chilly and dreaming of having a warm duvet wrapped around me. I'm also feeling a bit cross that Leo the cat has just jumped on Pip's bed disturbing him again and setting us back at least 10 minutes or more but I'm happy to offer him the comfort he needs. I hope that if I can get it right now, whilst he's young, and try and help him feel safe and protected we can go back in time in his emotional development and heal some of those wounds and losses and insecurities and maybe I won't have to spend time sitting on his bedroom chair writing, in the middle of the night, to reassure him back to sleep.

What shall I do now I've finished writing this post? Thank heavens for my IPad, there's lots I can do to keep myself awake.....

I've linked this up with #WASO over at The Adoption Social where you'll find lots of fantastic adoption blogs to read. 

Friday, 8 January 2016

Katie's ARND Diagnosis

They say when your child has been diagnosed with a medical condition that nothing has changed, they are still the same person that they always were. This is, of course, true but the reality of hearing the diagnosis changes a lot for the parent and the child. It doesn't change the love you feel but, in the blink of an eye, it can change the possibilities and dreams you have for your child. It can change the hopes and plans and expectations you had for your own future. That diagnosis, even when it was suspected, can open a door to feelings of sadness and grief for what might have been and anger at what should have been and confusion about what will be. That is very much the emotional place I am in since our daughter was recently diagnosed with a branch of Foetal Alcohol Spectrum Disorder (FASD) called Alcohol Related Neurodevelopmental Disorder (ARND) and Attention Deficit Hyperactivity Disorder (ADHD). Foetal Alcohol Syndrome (FAS); FASD and ARND are caused by exposure to alcohol in the womb and are completely preventable disorders.

After many years of infertility and recurrent miscarriages my husband and I decided we would build our family through adoption. We adopted Katie in 2010 when she was 2 years old. It was love at first sight and she captured our hearts immediately. She was, and still is, a bright and chatty, fantastic little whirlwind. Before we met Katie we read reports about her health and development and spoke to Social Workers and the Medical Adviser about her start in life. We knew she was exposed to alcohol when in the womb (although reports varied as to how much) and that she was born with a small head circumference which we were given no cause to be concerned about other than being told that any difficulties might not present until she was at school where she might need a bit of additional support. Nothing that would be of concern. Katie was meeting all her milestones and was bright and articulate. That remained the case for our first few years together but over the last few years we have gradually pieced together a different story. It has taken us a few years of unbelievable stress due to Katie's behaviour and a lot of research to reach a diagnosis.

We noticed very early on that Katie found it hard to amuse herself and was also very bouncy and busy. She is always in constant motion but toddlers and young children generally are and it wasn't until we adopted her brother, Pip, in 2013 and we noticed at even at 7 months old his ability to self amuse and be calm was far more developed than Katie's. We learned that Katie could not be left unsupervised for more than 10 minutes without immediately getting herself into mischief, doing things she had been asked not to do and taking no notice of house rules. Currently, at 8 years old, this has not changed. We discovered if Katie was quiet then there was trouble afoot. She is rarely quiet though; talking and singing loudly at 100mph; discarding toys and mess all over the house and taking things that don't belong to her. The stress is enormous because we are constantly worrying about what she is doing. I can't even have a shower without worrying what she is up to.

After initially sleeping 12 hours a night sleep became an major issue when in our first year together Katie struggled to adjust to the clocks going back, resulting in a winter of 5am wake ups. Going to bed then became a challenge once Katie came out of her cot. We spent hours putting her back to bed, trying every parenting method we could to keep her in her bed long enough to sleep. I eventually spent about 2 hours each evening sitting on the floor outside her bedroom door to ensure she stayed in bed. It was exhausting! We felt angry; frustrated and unsure how to manage the situation and initially putting it down to defiance but eventually realising she was anxious about sleep because she was unable to switch off. Our evenings as a couple were ruined and we often didn't eat until 9pm or 10pm when she finally went to sleep. We rarely went out as a couple because a babysitter could not be expected to deal with the bedtime challenge.

Defiance is probably our toughest challenge. What started as a cute little 2 year old saying "no" and having normal toddler tantrums became the angry and often violent tantrums and meltdowns of a 6 and 7 year old. We noticed, as she grew older, that when she has a tantrum she was hard to communicate with but there is a glint in her eyes that looks like she is deliberately behaving badly, and enjoying it! Screaming and shouting, swearing and slamming doors is an hourly occurrence in our house but interestingly Katie rarely displays this behaviour to anyone outside of the home so we find that people do not really believe us, my own family included. They see a beautiful and polite and seemingly compliant little girl. In a way I'm glad of this because it means she can have play-dates without any cause for concern and behaves pretty well in school but frustrated because we get the fallout from the effort of that compliance and many people assume it's just bad parenting that causes the problems. It really isn't. Believe me, we have tried every parenting trick in the book. What makes it harder is Katie finds it difficult to show any remorse or empathy or pick up on social cues so finds apologising difficult because she seemingly cannot understand or feel that emotion or understand how we are feeling and what is expected. This is common for people with FASD and incredibly challenging as a parent because you can forgive your child anything if they are able to show they are sorry. You have to be very forgiving when parenting a child with FASD. I will admit I don't always find that easy especially when she is holding the cats and not listening to their pleas to be put down or when obscenities are being shouted at me.

When Katie started school she was a quick reader but struggled with maths particularly understanding the relationship numbers have to each other. She was identified as potentially dyslexic after Reception Year tests but I told her teacher I'd be more inclined to lean towards dyscalculia. In Years 1 and 2 this difficulty became more apparent. Many people struggle with maths concepts, myself included, so my concerns were initially dismissed but I explained repeatedly that Katie's understanding of numbers was different. After two years of us and school trying to teach her number bonds to 10 they finally agreed there was a problem. By the time Katie reached Year 1 I had started to query whether Katie had FASD. A chance conversation on an adoption support board triggered some research on FASD and as I read the description of ARND I realised that Katie ticked all the boxes. Katie's physical appearance is normal showing none of the facial characteristics of Foetal Alcohol Syndrome but her small head circumference; her behavioural difficulties; the problems with sleep; inability to show empathy or remorse; not learning from consequences; taking things that don't belong to her; not remembering home rules; articulate speaking but not fully comprehending replies; hyper-stimulation; restlessness; anxiety and OCD; difficulties understanding numbers are all indicative of ARND.
A helping picture depicting the differential between age and understanding in a person with FASD
A wonderful Year 1 supply teacher eventually backed up my growing concerns about Katie's learning and issues with struggling to concentrate in the classroom and advocated for us in school. Katie was, and still is, however very well behaved and fairly compliant in school (although staying in her seat is a challenge) so it's taken a lot of impassioned conversations, and the support of an Educational Psychologist who I contacted through our Post Adoption Team, before school understood our description of our home life. They were great at supporting her transition plan to a new school in Year 3. The change in schools has been a revelation. The Head Teacher and other teaching staff have listened and reacted fantastically to my concerns and suggestions and Katie is making good academic progress at school and is more importantly feeling more confident with maths and all her subjects. She is excited about learning French and her reading is well above her age. She has an amazing singing voice and has joined the school choir; goes to brownies; swims and does gymnastics and has a good group of friends although her emotional immaturity impacts on her friendships at times.

Getting a diagnosis wasn't straightforward. We had already sought support from our local Post Adoption Team which has been helpful with managing Katie's very controlling behaviour but we needed to see a paediatrician for a diagnosis. I took Katie to see our GP who didn't understand anything about FASD. He refused to refer her to a paediatrician, saying we needed to access a referral through the Educational Psychologist at school, although agreed to prescribe Phenergan, which we had found helpful, to enable Katie to fall sleep. Undeterred we found a local paediatrician who was able to diagnose FASD and asked directly if they would accept the referral. When they confirmed I returned to our GP with the details and he agreed to refer Katie. We saw the paediatrician in November 2015, when Katie was 8, who confirmed our suspicions of ARND, additionally diagnosing ADHD. Katie was prescribed melatonin to help her sleep and this has revolutionised bedtime for us because generally Katie falls asleep within 45 minutes of taking her tablet. Katie is delighted that she can now sleep like other children and we are hopeful of an evening out in the very near future and having some time together as a couple. For us the next steps will either be a psychological profile from a Clinical Psychologist locally or a referral to the FASD clinic in Surrey headed up by Dr Mukherjee if local support is unavailable. He is the country's leading expert on FASD. We want to understand exactly what parts of Katie's brain have been damaged by the alcohol exposure so we can help develop her many strengths and support her challenges more effectively and understand her prognosis.

We haven't yet told Katie about her diagnoses. She struggles a lot with the emotional impact of being adopted and feeling different and we don't feel she is ready to be exposed to things we don't yet understand but we are drip feeding little pieces about how her brain works so that she can understand her emotional responses and learn coping techniques as she grows up. We don't want her to feel limited by any diagnosis or use it as an excuse for not reaching her potential but equally feel it is a part of who she is and we would want her to understand her whole story in time.

Some website that I found useful for piecing together Katie's diagnosis are:

The book I've found most helpful to date is Foetal Alcohol Spectrum Disorder: Parenting a Child with a Hidden Disability by Julia Brown and Dr Mary Mather

 There are also a growing number of support boards on Facebook where you can talk to other parents of children with FASD and also adults who have the disorder. Just type FASD into Facebook and you will find them.

Our story about Katie's diagnosis was shared on Mumsnet as a guest post. Click HERE to read the post.