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