Thursday, 24 November 2016

Exasperation!

How many times a day do you throw your hands up in the air in pure frustration or mentally scream inside your head exasperated? I don't think I'd even like to count how many times a day I do this.  All I know is that inside my head it feels like there's a washing machine constantly churning around an endless bundle of negative emotions.  Half the time I don't even think there are identifiable thoughts any more - it's all so jumbled up now that I can't actually pull any of them out to check over.

I was talking to a friend recently about parenting (I sometimes wonder if that's all I ever do!).  I like to pick up tips and see how other people do it.  Personally I feel like I've lost the parenting plot a lot of time and I realise that I'm feeling way too serious about it all and not really enjoying the time I have with my children.

In my defence my time with my children generally involves Katie calling Pip a "butt-hole" or shouting at him to get away from her (unless she wants to play with him of course).  More recently she's discovered the word "bitch" so that's a new level of name calling currently in use.  We've already been and done the "F" word last year.  Mostly she's bored of that one now which is a relief. I do know that Katie doesn't use these words at school - she has at least that much sense - but Pip doesn't have that filter yet as he's only 4. I'm dreading the day when I'm pulled aside to be told he's taught some poor unsuspecting child some colourful new words.  I either spend my days telling them not to call each other names or telling them to stop harassing the poor kittens or not to throw things at each other.  I'm sure I'm exaggerating.  There are some musical interludes of whale song and playful dolphins but my stress levels suggest they aren't as plentiful as I would like.

My friend is able to parent her child with logic, reason, some wonderful reverse psychology and lots of humour.  I don't even know where my humour has gone to hide at the moment.  Being "playful" about my parenting when I'm being thumped or screamed at or totally being ignored when I'm asking either of the children to do anything quickly becomes a state of mind that I am unable to access.  How can you be playful when you've asked someone to put their shoes on 20 times or have argued that "yes you do need a coat because it's almost winter/it's raining/it's chilly"  I'm fed up with asking Katie to clean her teeth and then having to police it because she'll just use mouthwash (in fairness I used to pretend to clean my teeth when I was younger too). How can you be playful when you've called your child 10 times and they are pointedly ignoring you for whatever reason they have in that moment? Why do we feel this need to defy our parents requests at every turn?  For me that's the issue in our house.  It's the defying at every turn.  I don't think my children do anything they are asked to do the first, second third, fourth, fifth, sixth, seventh etc time - unless it involves sweets.

So, tell me, are we the exception or the norm?  Am I turning into one of those parents that is pitiful, who has to scream to get anything done and loses all authority and respect in the meantime?  Is it just me? I am not naturally that person.  I can be a bit controlling and like things doing the way I like them done and a bit of a know it all (I'm a Taurean I'm afraid - it's in  my stars!).  I am very kind and caring however and will do anything for anyone and frequently end up rushing about because I do a little bit too much of that. I'm a bit of a hippy in many ways and often describe myself as tie dyed without the tie dye.  I want peace and harmony in the world.  I'm a Reiki healer.  I don't feel the slightest bit spiritual in my house though I can tell you that for nothing and it flies in the face of everything that I am and I'm at a loss to know how I can parent in the face of such opposition and still maintain my integrity and the person that I am.  My neighbours would probably die laughing if they knew I do healing with the amount of arguing they can hear from our house. My friend said to me that she felt that I was shouting "listen to me" and she's right.  Generally when someone says something to you and you feel like crying it means it's hit a raw nerve.  Much of that is my stuff - I can't lay that on the children.  It's all the result of a difficult childhood etc etc etc. I'm bored with dealing with the effects from my childhood if I'm honest. If I could make a bonfire of all my residue issues and burn the lot of them then I would. I've had enough counselling to sink a battle ship and I don't think under normal circumstances these issues would be more than a passing niggle.

It's the "under normal circumstances" bit though that's the problem.  These are not normal times.  My house doesn't feel normal - or is it like this for all parents?  People never admit what it's like in their house.  Why is that? We could all normalise so much if we could talk openly. Generally I feel that I am a strong woman. I've come through a lot of stuff over the years and I'm still standing and functioning well. I'm at a loss to know how to deal with some of these fundamental issues with the children though. My friend has a tactic of just walking away in the fact of such behaviours or making fun of tantrums. I know I try and reason with the children too much and I know I need to use fewer words. I'm a communicator though. It's in my blood! I like to know why I can't do something so that I can decide if the reason is a good enough one or not. The problem with being an adoptive parent these days is that there is so much information coming out about parenting and it's often conflicting that we end up worrying about doing the wrong thing.  Will walking away and ignoring your child spark feelings of shame and worthlessness or exacerbate attachment problems?  Will sending your child to their room for bad behaviour make them feel too excluded and unwanted? Will forcing your child to do homework lead to some mental breakdown (most likely mine!)? As another friend highlighted on an adoption parenting group I belong to shame is often what inspires us to behave well or reflect on things that we've done.  That is how we learn. That is a refreshing point of view.

As a parent I often feel totally deskilled.  It's all very hit and miss.  Some days I do well and some days I don't.  As much as anything that it linked to the mood Katie happens to be in that day.  After a recent CAMHS assessment we have been offered a parenting course for ADHD.  I'll go on it with an open mind; try not to feel too judged, and see what they say.  I do wonder if I inflame things too much by not distracting or de-esculating Katie. Half the time I'm too exhausted to even see it coming if I'm honest let alone finding a playful way of handling things.  My head already hurts from over thinking just about everything as it is. I'm trying to ignore the little stuff (there is a massive volume of little stuff though, it's hard to ignore it). I'm trying to give lots of positive praise where I can. I don't want my children to feel that they can't breathe without getting into trouble but equally I'd like them to just put their friggin coats and shoes on when asked and maybe if we weren't so caught up in the small stuff we could cope with the bigger stuff a bit better. I'm haven't even started on the stress I feel every time I go to use something that has been stolen. I now lock stuff away in a cupboard so keep some things away from Katie.

For the most part Pip is easier to parent than Katie.  His capacity to rationalise, reflect and understand is greater than Katie's.  Katie is stuck in oppositional mode most of the time.  She wants to just do the opposite of everything she's asked to do. Pip is often concerned about whether he is behaving well (except when he's arguing about his coat or throwing things at me because he doesn't want to go to bed). Katie is not like my friend's son who will learn from a negative experience - Katie would just go right out there and do it again - the joys of FASD. Neither child seems to get that the outcome is always the same no matter how much they argue. Shoes and coats are always worn; teeth are always cleaned eventually after being threatened with no sweets for a year! We do get there but it's at the cost of my own mental health.  I feel so stressed by the time the school run is over.  Is that just me having unrealistic expectations and taking it all a little bit too personally? How do I find a playful approach to these issues?  If I could find it for these things maybe I could find it for other things.

Answers on a postcard (or the comments section below) would be welcomed please.....




Thursday, 17 November 2016

Steps Forward....


It's been a few weeks since I wrote properly. I've been doing a lot of doing and doing much less reflecting of late. As usual I'm juggling way too many balls in the air and will be glad to put some down. We're still tying up lose ends after Pop's died and are currently in the process of selling their house. It's quite the task as there isn't a lot of clearing out to be done. I've been going through another low energy phase so I'm looking in the opposite direction than their house for a few weeks.   

The reason I'm low in energy ties in with a difficult phase with Katie. The start of term has been tough for her (and ergo us). The transition to Year 4 wasn't handled as well as I would have liked so anxiety and stress kicked in for Katie as she settled into the new school year. This fact has been pointed out to school. She's getting there now after some great steps forward with support from an Occupational Therapist and the Behavioural Optometrist which I've written about before in Understanding Katie. School have taken on board the suggestions from the OT and there has been a noticeable improvement in Katie's work. The simple addition of a sheet with the instructions on for the work has been brilliant and at the Parents Meeting tonight it was a positive discussion indeed.  It's still all very stressful in our household though.  Katie is teaching Pip all sorts of words we'd much rather him not know just yet and are getting fed up with being constantly told to "shut up" or being called "buttholes".  Levels of non-compliance are very high and this is one of the things that pushes my buttons the most. Asking someone 10 times to do something simple like say "put your shoes on" and getting a constant reply of "no" or my other favourite being totally ignored is hard work.  We have a rule of no technology until both children are dressed and teeth cleaned and that helps to a point but we are often late for school because Katie takes ages to put her shoes and coat on.  She can generally only remember one instruction at a time.  Pip is pretty organised and I can definitely tell the difference between parenting a relatively neuro-typical child to a non neuro-typical child.  Pip at 4 is capable of much more organisation than Katie is at 9. One of my strategies with him, even at this age, is to teach him to think for himself and not follow Katie.

As I often say "it would be funny if it was funny!"

As part of my ongoing mission to get all the help onboard for Katie as possible I recently met with CAMHS to see if they are able to work with us and also provide a full psychological profile for Katie. It won't be a surprise to many to know that they won't offer the Psych profile despite an intimation that they might and have "suggested" school ask the Educational Psychologist to provide this assessment. I've already asked school three times for this and it was irritating amusing that CAMHS wouldn't put this suggestion in writing in case it was "dictating them how to spend their budget". I do love a bit of joined up working! So I have asked school (again) today for an Ed Psych assessment. Katie's teacher has promised me she will be seeing the EP tomorrow and will raise the issue. It helps (I hope) that her teacher can see why I'm requesting the assessment and how it will benefit her as the teacher to have this knowledge.   

In addition to tackling school Katie and I met with her Paediatrician recently and asked if we could try Katie on atomoxetine (Strattera) at the suggestion of the OT (we're building up lots of initials in our life now). The Paediatrician was very helpful and prescribed the Strattera and Katie has just started her second week on the drug. She had a few worrying days of mood swings last week but seems more settled this week thankfully. It will be 4-6 weeks before we see a marked difference if this drug works. The aim is to help dampen down some of the external noise for Katie as her high levels of distraction and hyper-vigilance are preventing her brain from developing properly. I hate the idea of medicating her and agonised over the decision but, if this works and it can give her brain some quiet time to develop and feel less anxious, then I pray the pros will well and truly outweigh the cons in the longer term. 

I do feel like we're making steps in the right direction even though day to day life is very stressful. We're still a million miles further along though than we were last year and the year before when Katie was having mammoth violent meltdowns. We've tightened boundaries at home with instant technology removal for hitting and swearing and we've seen a massive reduction in swearing and a noticeable reduction in her hitting her brother. He does push his luck though so I try and be mindful of the pressure she is under. 

One problem causing Katie grief is friendships. This has been an ongoing issue since last term but is now with different girls. Many adoptive parents report concerns about friendships and for children with FASD this is heightened. My ears started burning with after-school grumbles about, quite frankly, some rather bitchy behaviour from some girls in her class, not letting Katie play with them etc etc. Year 4 girls are notorious for taking no prisoners as they find their way with developing "best friends" and excluding others. There is this going on in abundance at school and it seems however that it is not Katie who is the instigator or the only victim. This year, partly because I wasn't sure that Katie could handle it, but largely because of these issues I decided to cancel Katie's intended birthday party. There was no way she was inviting those girls into my house this year (and they were on her party list). I had a moment of thinking about killing with kindness but I didn't think Katie's party should be spoiled if they paired off at her party and didn't include her. Instead I took Katie and a friend (another one being targeted by the girls) out to lunch and to the movies. We had a lovely time, both girls were fantastic and really enjoyed themselves and I felt vindicated in my decision. There is a big dose of "girls will be girls" going on here and lots of learning required but it's all getting nasty silly so I had a chat with Katie's teacher tonight. I'm glad I did. She was gathering information about what she was seeing in class from the parents of the children involved. She was frustrated that the girls haven't been to see her themselves to tell her but she has been seeing the bitchy looks and gestures and has already moved one girl so she can't see another one in class. My biggest issue really is Katie not wanting to go to school because of this. It doesn't take much to upset the apple cart. We've talked about ways of responding and ignoring etc but I did feel,she need something to do to be able to get the upper hand so I taught her how to give the bird Ross from Friends style....



Well it had to be done didn't it? Her teacher thought it was amusing when I told her what I'd done.

So over to the school to see what happens next.......





Sunday, 23 October 2016

Picky Pip!

My darling son is becoming quite the picky Pip just lately. It's quirky and funny and frustrating all in one little pickle parcel.  For all Katie's "issues" she was quite amenable for me to choose her clothing at aged 4, but not Pip.  He knows what he wants and he will stand up for his right.......

Big Time!

First he started being very choosy about his PJ's.  It's quite the selection process watching him decide which tops feel soft enough to adorn his little body in bed bed. Piles of discarded tops and PJ bottoms are thrown on the floor for me to put away again.  During the very hot spell in the recent summer he insisted on wearing full length PJ's to bed "in case he got cold"

More recently he started rejecting jeans and trousers in favour of soft joggers (classy!).  In all honesty, because he's been very slow to potty train, joggers are easy to get on and off especially that now he has to get himself changed if he wets himself.  Pulling off some tight jeans that are soggy with pee is not my idea of a good time I can tell you.

The funniest argument we are now having is over swimwear.  Pip has been having toddler swimming lessons for nearly a year. There's not much swimming involved in Pip's case and an awful lot of bouncing up and down splashing the water everywhere or disappearing away from his little class to go and explore.  His teacher calls him constantly to return (a bit like I do all day long). Every single boy in his class wears swimming shorts now but Pip insists on wearing an all in one type of affair that you would normally put on children in the summer to protect them from the sun.  He will NOT wear trunks.  He will NOT go in the pool without wearing his swimming T-shirt thing.  He will NOT take off his swimming costume for a shower unless everyone else has left the shower area. He's mortified if anyone else sees him less than dressed. I've tried pushing the issues with him but he genuinely panics. If it wasn't for the fact that he would happily spend hours in the shower at home all nudie I would question whether this was a sensory issue.

The other stuff I will put down to sensory difficulties.  He likes soft things against his skin. So do I!  I hate feeling trussied up and unable to breathe.  I remember the dresses in the 1970's with the elasticated top halves which felt like ants crawling up and down my skin.  I can't cope with jumpers that are woolly and fluffy as they irritate my skin. I hate dressing up and live in my jeans all the time. I don't make a fanfare about it though so I don't think it's learned behaviour. Katie is the complete oppositie, she loves being dressed up.

So is this just a phase?  Children do love their phases don't they?  Or is there more under the surface? He has a large birthmark that I wondered whether he was sensitive about. No-body mentions it at home though (apart from Katie occasionally when she wants to be mean) so I'm not sure how aware of it he is.  It will remain to be seen.  He's a 4 year old living in a highly controlling house.  He lives with Katie doing all she can to control her life and the mood in the house with her behaviour.  He lives with me trying to control Katie and counterbalance all the controlling behaviour.  It's not really a surprise he's decided to join in the party and do a little controlling of his own.  What I'm now trying to do decide is whether I just let it all go and ignore it all or push the issue.  The issue of the swimming costume is fast becoming an issue of size because he's pretty much grown out of his current one and I either need to give in and buy a new one or just wait until it gets too small to get his head into (already becoming an issue) and see if he decides he doesn't want to wear it anymore.

Life is never dull is it?  Has anyone else had this issue with their little one? Did they just grow out of it? I don't think we're in autistic territory here but do wonder if there are sensory issues at play.

Tuesday, 18 October 2016

National Adoption Week 2016


I'll admit that #NAW16 has caught me napping this year. I''m chiding myself a little bit because it was National Adoption Week 2010 that brought me into the Bloggersphere as I wanted to share our journey with potential adopters.  I suspect I was very rosy-tinted back then and I had good reason to be.  We were ok Jack.  We had our dream ending.

Except we didn't.

We just didn't know it then.

One thing I've learned is that there is no "ending".  Adoption is just the start of the journey.  It's not a journey without incident.  Think "Planes, Trains and Automobiles" and you're getting a bit closer to the type of  journey you might be embarking on.  As I type this I'm thinking about the challenging start to the day today and how frustrated and angry I felt when Katie refused to go to school because Daddy was going to take her.  The reason Daddy needed to take her to school was because she didn't hurry up enough and we were late.  If she'd eaten her breakfast when asked then we might have been on time.  She didn't eat her breakfast though because the yoghurt was one day out of date.  It was perfectly fine to eat but to an anxious, OCD, FASD brain she would be sick and probably die if she ate it. Maybe I should have done as requested and made her another breakfast but I'm afraid I refuse to give her anxiety over food too much airplay because it makes her worse. If she hadn't been screaming and shouting about breakfast then I wouldn't have been delayed and then maybe I could have taken her to school.

But we were delayed and I asked Daddy to take her to school because I was still drying my hair.  I was already stressed because of the rigmarole over breakfast and also the fact that I had to get my car to the garage to be fixed; take two children to school and prepare the house for a client who was coming for a Reiki appointment.

Let's just say our house didn't reflect any image of the house where the mum is a Reiki Practitioner that you might have.  There was no zen to be found anywhere.

I probably didn't help things by pretending to phone school and ask to speak to the Head Teacher but I was desperate to get her to school at that point.  I should have remembered that she'd just spent the weekend sabotaging Pip's birthday so was clearly highly stressed and needed the kid gloves approach but I was late and I'm really not good at responding well when I'm both late and stressed.  The meltdown that followed the pretend call was epic and visceral.  No good to be had there.

I felt so alone and frustrated.  Daddy needed to get to work.  I felt like everyone was looking at me to find a magic solution to the screamfest that was our house.  Daddy got my big voice as well I'm afraid as I sent him to work telling him that I was just winging it the same as everyone else and I didn't always have the answer.

I'm sure some people in my life think I'm Google you know!

With Daddy gone Katie calmed down.  I told her we were going to take Pip to school and then get her to school late.  As it turned out the Lollipop Lady was still outside school and kindly waited for us to go into school and come back before locking the gates (I have chocolates to give her at pick up time). I managed to get a subdued Katie into school and have a quick word with the Head and asked her to keep an eye on Katie today.  We were only 15 minutes late.  Pip was 30 minutes late.  I then had to nip home; get my car; drive to the garage to drop the car off and walk home.  The walk home was very therapeutic and I decided to practice my new skill of mindful walking.  By the time I got home I was ready to clean up and get my practice room ready.

So why am I sharing this story today?  Well I think it fits in nicely with the theme for #NAW16 which is Support Adoption.  It's a clever play on words really because you could read it as a request to support adoption in general or you could read it as the support adopted people need and also the support we adopters need when parenting children who are often experiencing lots of challenges.

I'm going to focus on the latter interpretation because without support for adoptive families and the children then adoption in general becomes highly problematic. As a family we now need support.  We don't just need it as a one off.  We need it on an ongoing basis.  We need someone to say "I'll help you coordinate that support" or "I have an idea of the kind of support package you need".  Sadly that isn't how it works.  The reality is that you have problems and you try everything in your power to fix the problems.  Then the problems get too much and you need help but you don't know what sort of help you need.  You contact Post-Adoption Support and they assess you.  You start to feel optimistic that someone is going to really help you.  They then offer you some in-house Theraplay sessions when what you really need (as in our case) is someone who can help you access a diagnosis for FASD and a psychological and sensory profile and provide a full picture of what your child needs.  You need someone who can coordinate that package but you get offered Theraplay.

Don't get me wrong, our Post-Adoption Social Worker (PASW) is lovely but lovely doesn't give me what I need.  Instead I have contacted the GP and manipulated him into the referral to a paediatrician. I have taken Katie to see a Behavioural Optometrist.  I have asked our PASW to access funding via the Adoption Support Fund (ASF) for an Occupational Therapist.  I have self-referred us to CAMHS. Where is the support for doing all that?  Where is the support package for my adopted daughter? She's lucky she has an adoptive mum who used to specialise in support for young people and who talks to other adopters because that is the only way she is accessing the support she needs.  I have been trying to get this sorted for 4 years and we are only just getting somewhere.  Today I received an email from our PASW who wants to close our case because she has done her little bit but she can reopen the case if we need some specific work around adoption.

I'm sure you can imagine what I'm thinking.  The air inside my head is blue!  I know she has lots of other families that need support but what support are they actually offering?  Where is the coordination of services that we need?  Why am I having to coordinate all this on my own?  Why doesn't the ASF fund Behavioural Optometry when it might actually help my child?

So #SupportAdoption is an interesting topic for me this year. My rosy-tinted glasses have been ripped off big-time.  That's not to say that I regret adopting.  I don't.  I love and adore my children and I'm still an advocate for adoption in cases where children absolutely need a new family.  It is that love that will keep me coordinating their support and fighting for the help they need.  But it doesn't stop me wishing that someone else could be in our life to advise us on the support we need and help coordinate that for us.  It doesn't stop me wishing someone could have told me years ago that an Occupational Therapist could lift the lid on the struggle our daughter has at school and prevented me having to shout out in the wilderness for 4 years before anyone heard me.  It does rather feel like the support on offer for people who are adopted or who are adopters is crying out for coordination and definitely needs to be more easily accessed.  Maybe if it was we wouldn't have experienced the awful morning we had this morning because we would have had the help we need a few years ago and my children might be further along the road to recovery than they actually are.

I will be sharing information about adoption and videos from other adopters via the Life with Katie Facebook page over the course of the week.  Do come and share your thoughts about adoption with me.




Tuesday, 4 October 2016

Understanding Katie....

Regular readers of this blog will know how long it took us to get a diagnosis of Alcohol Related Neurodevelopmental Disorder (ARND), which is a diagnosis under the Foetal Alcohol Spectrum Disorder (FASD) umbrella, and ADHD. It took us a while to realise that her challenges and behaviour weren't age related and "just" adoption related.  There is, of course, never a "just" when it comes to adoption but it can be easy to miss other diagnoses when you're seeing through adoption spectacles because they can tend to blur other issues. Let's face it, it's hard enough to wrap your adopter head around trauma and attachment issues let alone then working out what else might be going on for our children.  Most adopters I know spend a lot of time watching their children and worrying that they might be missing something.  You tie yourself up in knots trying to work out why your child is doing this or that and whether you should be doing something about it but then not quite sure who to ask and where to access support.

It's a real minefield when it comes to FASD with very few doctors trained in diagnosing the condition. A diagnosis of FAS (Foetal Alcohol Syndrome) is possible via a genetics referral but only if the child has all the facial features associated with the full blown syndrome. Only a small percentage of children have the full blown syndrome and symptoms can vary depending on when during the pregnancy the baby was exposed to alcohol.  As a parent in the UK you are lucky if you can find a GP who has actually heard of FASD let alone then be able to access a referral onto someone who is able to diagnose the condition.

We were lucky - well lucky and very tenacious.  Our GP had never heard of FASD, in fact he wrote ASD in his notes - I had to stop him and inform him that we weren't talking about Autistic Spectrum Disorder. We managed to find a paediatrician locally who was trained in diagnosing FASD through our own resources and agreed to take our our referral.  I then went back to the GP with the details in my sticky fingers and asked him to make the referral.  Being used to my dymanic approach, he agreed.

Having accessed a paediatric referral and received a diagnosis of ARND and ADHD we have turned our attention to trying to understand exactly what this diagnosis means to Katie's functioning.  We can easily see her distractability. We know the full force of her behavioural challenges.  We watch her struggle with OCD and panic attacks due to anxiety. We are starting to understand that she has processing difficulties but what is driving those co-morbidities? Fed up with her teachers at school telling me "she's fine at school" but seeing the stress that she experiences through a general school day I decided to start finding this out for myself.

I spend a fair bit of time these days reading up about FASD and asking what other people are doing to help their children with this diagnosis.  There are so many symptoms and co-morbidities that it can be hard to know. What other information do we need?  It really is a case of piecing it all together because my GP doesn't have a clue.  Other than a small head circumference we have ascertained from our paediatrician that Katie has no other physical difficulties except for mild hypermobility. From talking to other parents I learned that with FASD it's often common to have sensory processing challenges as well so that was where I instinctively turned my attention next.  I contacted our Post Adoption Social Worker (PASW) to ask if we could access an assessment from an Occupational Therapist via the Adoption Social Fund (ASF) and I also made an appointment independently with a Behavioural Optometrist. Initially the ASF said they would not fund the OT assessment if the issue was related to a physical difficulty but they would fund it if it the assessment was due to trauma.  I noted back to our PASW that if being fed alcohol in the womb against your will and receiving a diagnosis of ARND as a result wasn't a trauma then I didn't know what else could be. Thankfully this viewpoint was upheld by the ASF and funding was secured for a full OT assessment towards the end of the school holidays.

Whilst we were waiting for the OT assessment I took Katie to meet with a Behavioural Optometrist. This was something I had been recommended to do by a friend who's son has a diagnosis of ADHD and it had been found to be very helpful.  This assessment has to be self funded because, despite it being enormously helpful and quite possibly one of the most helpful services we have accessed, we have been told it is not funded by the ASF which is highly frustrating because the cost of this service in our local area is quite high. To deny Katie a service that might actually help her makes me feel very puzzled.

The assessment was enlightening in itself and highlighted that Katie's brain processes in relation to her vision are compromised due to the brain damage and her delayed brain development in some areas.  Whilst she can see perfectly well her visual processing takes in too much information and struggles to maintain focus and is easily distracted.  The easiest way of describing it is to say she sees everything and nothing.  Her brain is on permanent sensory overload which impacts heavily on her executive functioning. If you ask her to find a pair of shoes in a cupboard or tidy her room she is unable to pinpoint where those shoes are because she can't see the wood for the trees.  She also pre-empts a lot what might be coming next, her brain jumping about in anticipation.  I also saw first hand how easily she becomes anxious when her perception of a situation is challenged and how this then impairs her ability to think clearly and function well.  Watching the Behavioural Optometrist assessing her was fascinating. We had chosen to go for a 45 minute assessment rather than the several hours long one because I didn't feel Katie would be able to cope and I was correct in that judgement. She was incredibly cooperative (as she always is with other people) but was clearly very strained by the end of the assessment and unable to hold her hyperactivity together.

The Behavioural Optometrist immediately reported back that he could see how quickly she questioned her knowledge and how her anxiety prevented her from being able to access information from her brain.  This was noted when he asked her to cover her left eye with a lens.  Katie covered her right eye so he asked her which eye she was covering.  She replied her left and he then asked her to tell him how she came to that information.  I was confused at this point because usually she knows her left and right fairly reliably. You could see she was confused and I attempted to jump in to help her but the Optometrist asked me to hold off.  He then asked her if she was left handed.  She looked confused and then said that she was.  He then asked her if she had always been left handed and she said "yes" but looking very confused at this point.  He asked her how she knew which was her left and right.  She put both hands up to make an L shape but still got confused. He pointed out to me after the assessment that, due to her anxiety about the task, she was unable to access the knowledge she had about which was left and right so ended up questioning everything she knew about this.  

We have seen this before when a friend at school told Katie she didn't have a cat.  She was very upset about this because she does have a cat (we now have 4).  At home I asked her if she had a cat and she said she did but because her friend questioned this fact and told her that she didn't she got so confused she was unable to argue her point or even know what the truth was.  Imagine an older child or young person with FASD being queried about an event or something about them by the police and giving an inconsistent statement because they literally cannot access the truth from their brain due to anxiety and brain damage. It made me realise just how vulnerable my daughter might be in the future without the right help now.

The findings of the Behavioural Optometrist were backed up by the OT when she assessed Katie. Thankfully all Katie's sensory development is age appropriate which ticks one problem off the tick sheet. The conclusion of the OT was that Katie is very inattentive so gave her a diagnosis of ADD, without the hyperactivity element. It isn't commonplace these days to diagnose using that terminology. ADHD is an umbrella diagnosis rather like FASD but her description was helpful nonetheless. Knowing that her hyperactivity and distraction is driven by external stimuli rather than internal helps us find a plan to support her. The OT recommended that Katie access a prescription for atomoxetine (also known in the UK as Strattera) which she feels will dampen down the external onslaught and hopefully give Katie's brain the space it needs to develop. Currently the sensory overload is preventing her accessing her memory effectively and is causing her to be highly anxious. I'm curious as to how that will impact (or not) on any brain damage caused by the alcohol exposure but I suspect that will become clear over time.

So how do we accessing atomoxetine? Back to the drawing board, although it was a drawing board slightly confused by the OT who didn't think our Paediatrician would be able to prescribe atomoxetine and recommended we access CAMHS (I do love a pipe dream!). To cut a very long few weeks and a self referral to CAMHS short I have now ascertained that our Paediatrician can prescribe said drug so an appointment is pending. I'm going to leave our referral to CAMHS ongoing because there is still the issue of a recommended full psychological evaluation to sort out and to examine her executive functioning and I think we need a referral to CAMHS because Katie's anxiety is impacting on her eating, sleeping; behaviour and mood. This post is already long enough so I won't go into great details about that but parents with a child under the FASD umbrella will know how intense and stressful it is parenting a child with this condition. Let's just say there isn't much rule following going on here at the moment along with lots of oppositional behaviour. Thankfully the temper tantrums have calmed down considerably although have recently been replaced by panic attacks where she is convinced she is going to be sick. Being sick is one of Katie's biggest fears along with food being out of date and her new one of the house being broken into (thank you to the would be burglars who broke into Nana's house for that new fear – thankfully her house is empty pending the sale so nothing was stolen and no-one hurt).

Katie's OT came into school last week to do a class observation and perception test. It only took her 20 minutes in class to see Katie misunderstand instructions. The class had been asked to copy down the days of the week in French, randomly written on the whiteboard and list them in the correct order in their workbooks. All Katie heard of the instruction was to copy the words down, and that is what she did, as a mirror copy of the way they were written on the board. When I asked Katie about the task later on that day she was genuinely convinced she had completed the task correctly. This explains why she doesn't often ask for help - she doesn't realise she's misunderstood. The way we have agreed to help her with this in school is for the teacher to provide a sheet on the table for small group work with the task written on it so Katie can re-read it. This also ensures she doesn't feel singled out. School have agreed to use small groups where possible instead of whole class teaching and approved the use of fiddle toys. We are going to pin fiddle things such as material or soft keyrings into her pockets to keep them discreet. The use of LSA support was noted. Because there is a lot of pressure on the class LSA due to the needs of another pupil this will need to be assessed by the school. Katie doesn't meet the level of need required for an EHCP plan because she doesn't need one-to-one support so this, I suspect, will be a challenge for school. I'm hoping that once the other pupil gets the diagnosis needed to meet the need for an EHCP that additional funding might come out of that and free up the current LSA. I'll have to stay on top of that though.

So that's where we are currently: Pending an appointment with the Paediatrician; waiting with fingers tightly crossed that we will meet the criteria for our local CAMHS service; watching to see how school work with the recommendations of the OT; and deciding what we can do about working with the Behavioural Optometrist.

One positive that we experienced this week was that we realised there was a link between Katie feeling sick and panicky on a Monday before going to Brownies. Because the Brownie pack has moved to a new hall Katie is struggling with the transition; the new smells; the new hall and this is raising her anxiety levels. After helping her through screaming and hysteria where she wouldn't believe she wasn't going to be sick this has been a massive realisation and enabled her to go to Brownies with a little Cherry Plum Bach Flower Remedy to help calm her down. She is beginning to understand that anxiety for her feels like she's going to be sick. We have a way to go with this but I'm pleased she finally is able to hear what I'm saying to her and know that we can help her through it.

Useful Links for FASD:

FASD Trust
NOFAS UK
FASD Network
FASD Clinic
Adoption UK - Living with FASD
British Association of Behavioural Optometrists
FASD Through My Eyes

Wednesday, 27 July 2016

Challenging Pip!

I was expecting Katie to be a challenge at the start of the holidays. I didn't need to dress up as Einstein for that one. She's been mouthy enough at the best of times so I was primed and ready for the transitional fall out as I wrote about in my recently in Transitions. What's taken me a bit by surprise is Pip's current regression and behaviour.

I'll be honest, Pip has always been my Ronseal child. He's relatively straight forward. He has his "stuff" and issues that we manoeuvre around and there were the issues of his weight and being a bit delayed in his speech etc but mostly he's quite an easy and sunny young man. Well he was. Not at the moment he's not. The balance has tipped to 70% grumpy and 30% his usual sunny self. I don't know whether it's tiredness; the transition to the big room at pre-school; the change in routine; the fact that he's 3 and a half; he's had some sort of hormone surge; he's a bit bored; he's copying Katie's behaviour; or, dare I even consider it, issues similar to Katie; or prehaps all of the above; but he's possessed by some sort of crazy demon at the moment. He's very regressed both in his speech and his behaviour. He's being very rude and hitting people; he won't listen to a single word being said to him unless it involves the word "sweets"; he's running off all the time and can't sit still for more than 5 minutes which is unusual for him, and won't follow any rules. He's like a cat on a hot tin roof and he's very hard work. 

I know boys can be physically hard work. He's a real live wire and I joke he's like a dog that needs walking twice a day. We're all a little stir crazy because of my sprained ankle although I've managed to get them to soft play and to the park to burn off some steam. It doesn't help that he wants to see what the builders are up to in the garden and doesn't understand how dangerous it can be if he doesn't play in the areas I've said they can play in. Katie doesn't listen either. I must have told them over 20 times to stay on the patio today. Katie with her 8 year old FASD non-listening ears and Pip with his 3 year old non-listening ears are being a mammoth challenge. I'm feeling ridiculously frustrated. I can't do anything in the house without checking every few minutes to see what they're up to. I'm trying to sell my Mother-in-Law's house and manage her finances and stay on top of the housework and build whilst stopping every few minutes to have a circular argument about staying away from the builders. I could scream with frustration and irritation. In fact I have been known to shriek and holler a few times (a day). The timing of the builders coming back couldn't have worked out worse really but we need the garden back in action so we can put up the trampoline and swings which will make life so much better. Well, it would but Pip is also disappearing whenever he can and doesn't reply when called so I'm not sure I could trust him in the garden currently. 
I'm mentally exhausted and feeling very tetchy. It's not how I want to be. I had a row with my sister in Asda the other day and stomped off and left her with a few choice words. I feel like I want to take no prisoners. I'm aware enough to know that my reaction is now probably exacerbating the children's behaviour but my stress now has friends and I'm really struggling with ignoring the head in a vice feeling   In a funny way I suspect the timing of my sprained ankle was to remind me I need to slow down a bit. I really do need to slow down but my response to the universe would be "Have you met my kids? The Chaos Kids? Would you like to babysit them so I can rest my ankle?"

I can't end in a low, it's not in my nature. It's good to remind myself of the positives and remember that nothing is forever. Time is always moving on and nothing stays static. My children are lovely. Katie is fantastic and beautiful and funny and full of crazy ideas and thoughts. Pip is like a wild horse who wants to gallop with the harras of horses, mane flying behind him. He's utterly delightful and so generous and loving. 

But boy are they hard work.....

Sunday, 24 July 2016

Not how you want to start the holidays.....

O

Sitting with my foot elevated and iced isn't how I anticipated to be spending today. We should have been off to see a story time with Paw Patrol today. We should be packing to go and visit Mrs Vander-Cave tomorrow for a few days but sadly I'm stuck with my leg in the air trying to ensure my ankle heals as quickly as possible. 

I'm wondering if the universe is trying to give me a message (although a massage would be more beneficial at the moment if I had my say in it). Am I not supposed to be on the roads? Am I supposed to be having an enforced rest? I can cope with the concept of protection but the universe clearly hasn't met my children if it thinks I can rest. I do believe that things happen for a reason though but sometimes the reason isn't immediately clear. 

So, what did I do I hear you wondering (I'm clearly telepathic)? Well, this is the penance for trying to have a family outing. To give the children a break from the heat yesterday after a challenging day with viewings at Nana's house, we decided to head off into the New Forest to a wonderful river spot in Brockenhurst. And wonderful it was. The children splashed in the river and Katie bravely dived into the chilly water to swim around the banks. Pip was in his element in the water and finding stones. He ran from bank to bank with a huge grin in his face. We planned to out to a favourite pub restaurant for some dinner on the way home. What a lovely treat!

Well it was until Pip decided not to come and get changed when he was called. I flip-flopped down a slight incline towards the river to collect him and suddenly the stones started to move under my feed (I did feel the earth move under my feet but the sky didn't tumble down!) and I slid down the slope and felt my ankle turn. I had long enough during the fall to hear my ankle crack and pop and for the thought that I'd broken my ankle to occur to me. 

A wave of sickness and pain washed over me. TCM and Katie rushed over to me. I managed to prevent my phone from sliding into the water with a nifty over arm throw to TCM before allowing the agony to engulf me. Being incredibly independent is not good at these times as TCM wanted to get me to stand up but I batted him away wanting to stay in the muddy puddle I'd landed in whilst I assessed what had happened and whether I thought I could stand up. I was also unsure how the heck I could get back up the stoney incline. 

I sat there for about 10 minutes wondering what to do; wiggling my toes and trying to flex my ankle. No bones were protruding so that was positive. Katie by this time was hitting full blown anxiety mode. Sadly this doesn't present itself as concern for anyone. She gets very aggressive so I was trying to reassure her that I was OK whilst wondering whether I needed an ambulance. 

Eventually the sickness ebbed and I felt able to attempt to stand and hobbled gingerly with the aid of TCM back to our picnic blanket. I tried to entertain the idea of still going out for dinner because I hate being a burden to anyone but acknowledged eventually it really wasn't a good idea. I could feel the pain travelling up my calf muscle like a tight band and just wanted to get home. TCM had to drive home which caused a fresh wave of panic for Katie because she knows I get motion sickness and she was beside herself with worry that I might be sick in the car. With a sing-song voice masking the pain I was in I did my best to reassure her that I could make it home in the car without being sick. Which I did - thankfully!

I spent the evening at home with ice (sadly not a slice as well) and a pile of cushions. I decided to assess how it was feeling before going to hospital. I suspect it's (just) a nasty sprain of my ligaments. Today the ankle is sore and stiff but it's not throbbing with pain and I'm hobbling about. I can't flex it backwards much yet so will give it another night and review my progress in the morning. All this goes against the advice of my friends on Facebook. Mrs Vander-Cave, TCM and myself are in agreement on holding off the X-Ray's this my sister was all for taking me to A&E and took some talking down.

I'm so hacked off that I can't drive up to see Mrs Vander-Cave-Cave tomorrow and am currently wondering how on this earth I can entertain the Bonkers Twins tomorrow with a dodgy ankle and the builders in. I'll worry about that one tomorrow I think and I'll give myself more Reiki and Arnica and ask Archangel Raphael for a miracle healing. 

I had such a great week planned as well.......