A starting diagnosis

This week has been interesting for many reasons. Second emergency visit to GPs resulting in a drive to the Children’s Assessment & Treatment Unit (CAT) in the main hospital in the next city over. This was at 1840 on Wednesday so managed to catch T who promptly cancelled his hygienist appointment and came home to meet Sqk & I. I had already been on phone to my other Brownie leader apologising as having planned the meeting left her with the Brownies by herself with 20 mins notice – didn’t even have chance to pass material over. Once in hospital waited a while to be seen (busy evening for children’s surgery team) and then there were various other hiccups which resulted in Sqk having bloods taken (& cannula inserted) at nearly 0100 before we finally moved to the ward after 0200. He had managed to fall asleep on me at about 2100 and then moved to bed once T got back with stuff for us both. The blood test was not fun as he was woken up, moved and then sat on Daddy’s knee while a cannula was inserted into his hand. He did scream a bit but then fell back to sleep on CAT bed.
Continue reading “A starting diagnosis”

Long time

No post bar weekly Instagram posts.

In fact last time I posted was mid December. Since then both T & I have changed jobs – January was an interesting month and indeed it is only this week just gone that we are fully into the new routine as before half-term my sister was picking Sqk up from school with her two and taking him to Mum’s on a Friday evening. I have had to change my work at home day as all my teaching this semester falls on a Friday. So now I drop Sqk at school and pick him up on a Thursday after discussions with childminder as this is one of her busiest days. Busiest is Wednesday but that is never a good day in university terms as stuff often happens on a Weds afternoon although my new place of work appears to schedule teaching even then. Ok even with this I am still going into work for noon every other Thursday for research group meeting and this next week I am going in to cover a PG session on embedded software for a colleague who is in Germany.

Our PASW is getting stuff done – ASF funding permitting we are starting sensory work later this month and she is talking to school. We had a meeting this Thursday (was a busy day what with osteopaths, research meeting & this) at school with PASW, SENCO, class teacher and I. A pretty fruitful discussion ensued with me discovering that Sqk has had full-time 1to1 support since they came back after Christmas (would have been nice to be told!!!! Although I have wondered). Also our PASW is good friends with Sqk’s original SW who knew the birth family from well before his birth and has basically said she really doesn’t think there is any need to think about FASD. We still wander due to facial features, small head and ADHD like behaviour. His concentration span on anything he is not interested in is horrendous and as for fine motor control…. However his academic ability appears to be good when he can be sat down – they had a comprehension test the other week where his TA acted as a scribe. His teacher said he did very well – better than a lot of his peers and he is one of the youngest in his year 1 class. He loves reading and story time and enjoys maths so we are all determined to try to get the strategies in place to deal with his wonky brain wiring as he has capability to go far if we can get him to engage.

Socially he is liked by all his peers and is always surrounded by children in playground. Even this morning at soft-play he has made a little friend (probably 3/4) and they are happily running around together. Emotionally he is probably 4 on a good day, 2 on a bad one and somewhere in between most of the time. In some ways had we deferred his entry he might be better off but there is a very good reason we did not and school know this and are grateful for it. Academically it was right decision it is just those emotional skills.

We all agreed that the biggest issue we need to deal with is the ‘stealing’ (food mainly from teachers desks when he sneaks back into school) and lying about not doing something when he blatantly has. These are common issues at school and at home along with the disappearing in the blink of an eye. As the SENCO says he is not a runner but is very good at hiding. We are working with him by saying he must respond when someone calls his name unless it is in hide and seek. Getting better at this at home but it is work in progress. Going to try social stories but need to find some non-autistic aimed ones as he needs the colour and shading that autistic children do not need.

On the positive side Sqk is making progress and hopefully with everything we are all doing we will get there. He is on a modified behaviour policy (yeah). Even when he spat at TA last week it was handled by time in at break – sat on a chair in classroom with teacher present and a sand timer counting down the time. I will admit that having another adopter in the school who has already fought many of the battles has made life so much easier and I am so grateful for that. Plus Sqk copes with me working which is beneficial for my own mental health particularly thanks to the loveliness which is my new campus. So looking forward to the better weather and ability to go walking when I need to think. This is the view out my new office window…

Where we are….

Sat in our local soft play place which is keeping Sqk amused while Daddy has to work this morning – flu jab training today. Not certain if this will be paid or not – probably not as it counts as CPD (Edit: definitely not). We are in the middle of third anniversaries at the moment – yesterday was 3 years since our matching panel hard though that is to believe. Also this week it was 17 years since I started working at the university which bar a year as an intern (paid) in the USA is the only place I have properly worked beyond vacation jobs while at uni. Seems very odd to realise that 11 weeks on Tuesday will probably be (provided I don’t need holiday day beforehand) my last day there. Finished first week of term and told some of the students I am leaving – news will get round.

On adoption front this past year has included the 2 big milestones of Sqk being with us longer than his main placement in foster care (last Dec) and on my Dad’s 65th birthday having been with us longer than he was in care (which he was from birth). This year he has made some huge leaps forward although year 1 is looking like being the issue we expected. Really we should have deferred his entry to school by a year given his social/emotional age but there were a couple of reasons we didn’t and they still remain. This week is first time we have had a report from school that he has really struggled and been attention seeking all day – on the day I was home ill in bed which may have something to do with it. He coped with yesterday when unusually his childminder had him for the hour before school as I had a one-off 9am lecture I had to give. But that was with warning and preparation which we cannot give him when I am ill. Bless him Sqk still wants to play and not sit down and formally learn plus his handwriting is still a big problem. Reading and maths (verbal) he is well up in but his writing will start to hold him back. Mind you verbally he is great with literacy – last night he happily told me how to write a sentence correctly and he can tell you what is wrong with something you write.

I have managed to find an app on the iPad to help with cursive writing so hoping with his chunky stylus he will start to do that. Problem we really have is both DH (CP) and myself (dyspraxia) have problems with handwriting ourselves and neither of us hold a pen correctly so it is fun trying to help Sqk. We will get there though although cursive may never come fully. Really I just want him to be able to write legibly. Hopefully we will get there eventually…..

FASD Day

We are incredibly lucky in that Sqk comes from a non-substance misuse background so is not at risk of FASD or one of the other alcohol related disorders. It is only when we have thought about matters that we realised we would not have got a local child from a substance misuse background due to DH being a community pharmacist in our local city.

However, I know several children who have got a FASD diagnosis or are suspected of having it. In particular one boy who we do see a lot of given he and Sqk are at the same school and his parents are good friends of ours. So I have some knowledge of how much it can affect families – so many of the adopters I know either in person or online are coping with one of the disorders associated with drinking in pregnancy. We were both very happy with the recent guideline changes that say no alcohol is safe in pregnancy and do not see it as ‘nanny state’ interfering with our lives but rather entirely sensible advice to prevent a lifelong condition.

People are astonished when I tell them that alcohol is more dangerous to the foetus than heroin. We’ve been lucky in that one the expert’s in FASD has been our LA medical advisor – and she does regular training sessions for prospective & approved adopters on drugs & alcohol. When we attended one 3 & a bit years ago, DH actually wrote it up as professional CPD due to what he learnt in it – he has been able to use some of what he has learnt to support his clientele.

I cannot completely comprehend how it can be living with a child with FASD/ARND but I get glimpses from what other adopters say and post online. I am glad that the effects of this entirely preventable condition are becoming more widely understood and known in the country as a whole. Yes some mothers will say I drank through pregnancy and it had no effect on my child but it so much down to individual metabolism and also luck. Only a small proportion of children with FASD have the facial features – as those occur when alcohol is taken at a very specific point in early pregnancy when the face is developing.

I always said if I had been able to become pregnant I would not have drunk during it – and in fact when we were trying to conceive I avoided drinking alcohol – it seemed such a minor thing to do to ensure the health of any children. I know for addicts it is difficult because they are addicts but we have a hidden alcohol issue within this country so it affects more than the children of acknowledged addicts. Estimates put it at around 5% of children born have some level of FASD  so my major message when I am talking to young women is to remember that it is not just binge drinking but one or two drinks at the wrong time that can cause lifelong effects to your child so why risk it if you can avoid it. Yes don’t stress too much if you had a drink or two before you relaised you were pregnant if the pregnancy is an accident but if you are trying to become pregnant it may be best to give up drinking as well as taking folic acid.

My views are somewhat different to many of the mums I talk to in the school playground but I come at things from a very different perspective. I was chatting to another Mum this morning (whose son is probably autistic) who said she gave up alcohol in both her pregnancies as she really didn’t feel the risk was worth taking and it was a good thing to do for her children.

Update as new term starts

Well after an interesting end to July which ended with me getting a job offer for a post in the civil service we were all set to up sticks and move 20 miles across county when I got an interview for a job in another local university (email came through miraculously while we were in France with in-laws & patchy Internet). So I was back at work a day before having another day off for interview – which I went into with no real preparation (presentation was a recycled one from 7 years ago) and not caring about getting the job. Lo and behold two days later  – in Clearing I get phone call from Dean of School – who when we eventually connected up (took 4 attempts) offered me the job. After a lot of discussion between DH & I and my parents we decided that a job that kept us living where we are and didn’t change a lot for Sqk was the right job. So I gave back word on civil service position (explaining that this other job was better for my son and when you come down to it I am a mother first) and accepted the job that means effectively I travel 3.5 miles further a day to work as of January.

Sqk amazingly calmed down a lot once we explained to him that we were not moving and the anxiety levels in the house had gone down. Even starting school again has not been much of an issue other than wanting to go back to Reception as there is more play there. But so far so good in year 1 – ok we are a week in but not had any reports of issues yet. Then again going on a year ago, it will be close to half term before the real Sqk comes out at school. His childminder bless her has been getting some of the fall out from school compliance as he feels secure there. He was very happy to see me at end of school today – I am praying that my timetable allows me to continue to do this in January. However, I have plans in place in case it doesn’t – childminder before school and my Mum after school for the 12 teaching weeks. We have also agreed for the remainder of academic year from January to pay for an additional half hour in evening until I see what my journey is like. Sqk’s bedtime is now half an hour later so he gets same amount of time with me in evening anyway.

Two evenings on coming home this week have involved me opening garage so Sqk can get his scooter out. The daughter of the family who moved onto cul-de-sac just before end of last term turns out to be one of Sqk’s good friends from school so he wants to go out and play with her when she is out. Last night it was me watching 6 kids (Sqk, his friend, her older brother (year 4), another lass from year 1 who lives at house opposite end of cul-de-sac and the two boys from house 2 doors down from us (year 2 & 4). Other parents happy to let children roam freely but we are not quite there with Sqk yet although if he keeps to boundaries as well as he did last night I shall get there. It was wonderful to see him so happy and so involved – his social/emotional maturity was not noticeable in the scooter/bike riding going on.

Just got to hope that the anxiety over SH’s job doesn’t kick in too much – he got told at his performance review he either needed to look for a new job or agree to go on a performance management plan. His boss said he is a brilliant pharmacist but not so good on the HR and shop management side. Mind you as DH says he has had little support. However I got him cheered up by finding 7 or 8 jobs that were possible on Tuesday night – and he has 5 applications in already – with more potential jobs out there. He thought it would be difficult to find a new job but looks hopeful. We have agreed he is going to take the opportunity to get out of the city and hopefully into either an online pharmacy, a supermarket pharmacy or a hospital outpatients dispensary (not the ones in our city however). All of these take away a lot of the HR stuff and more particularly the large amount of retail that comes in a high street pharmacy branch. As he admits himself had a crystal ball 13 years ago when he qualified he would have gone into hospital pharmacy rather than community as he is much more into the clinical and patient focused stuff.

Anxiety Reigning

Unfortunately at the moment anxiety seems to have got our family in its grip. I have been struggling since early April when I got told my discipline at university was being closed and we still have no idea what the teach out plan is and who is likely to be keeping a job. The uncertainty is not at all helpful for Sqk at this time of year when it is all change at school.

Sqk has been coping well – transition day the week before last (up to year 1 with experienced teacher) was hard for him from what I have heard (via childminder). He struggled with sitting at desks and was drawing on them (with pencil thankfully) and was definitely not calm. He has been a little fizzy for a few weeks – we have tried to keep the worst of my anxiety from him but it isn’t easy and he is picking up on it along with being tired and school routines going. SO we expected him to get much more fizzy and to have behaviour issues…

This last week it has all come to a head and he managed three days (2 full and 2 half) in school thanks to diarrhoea attacks. I have been off work ill thanks to a chest infection which didn’t help matters and on Wednesday I got a call at lunchtime to go pick him up. At first we put it down to him eating something he shouldn’t have – not the first bout of diarrhoea of the year although the rest have all been at weekends or during holidays – as I said to his class TA they have actually done well to get to the last 3 weeks before it has happened at school. Kept him off Thursday as we were wandering if it was anxiety related (sports day so decided too different) and he had no further bouts (loose/soft but not diarrhoea). So he went in on Friday full of it – and I got the call again at lunchtime. He has been having a lot of movements over the weekend but mainly just been very loose although yesterday morning was interesting as he took his own nappy off – cue boy in shower and Vax in use. Thankfully my mother lives a mile from us and I had pre-warned her Friday as given I was off last week I need to be in work this week (well have an interview at a local firm tomorrow). So he has gone to Granny’s today – and having phoned NHS Direct yesterday he also has a doctors appointment this morning as DH suspects he needs something to slow his gut down – and for under 12s it is a prescription only drug so he cannot supply it.

Update: Ok now it is policy to let U12s go a fortnight before treating – doctor will do stool sample to prove to school what they already know (he is not ill) and then we can send him back. No actually we cannot as they do not have the staffing provision to clean him up after every instance and do not want to be dealing with him in pull-ups (which is to be honest how we are coping). Annoying as anything – so grateful to Granny for having him and being prepared to continue to have him. DH and I have a cunning plan however…….

This weekend has been really good – we took a day trip to London to meet up with some of the people from one set of adoption forums. As DH said it was a train ride to play in a park and have a picnic. Sqk had a brilliant time – Coram Fields is a wonderful space and he spent a lot of the day on the roundabout (suggesting anxiety again as spinning is a regulation technique for him). We expected him to manage about 2 hours at the most – in the end we had to leave because it was time for our train home. Yes it was a long way to go but Sqk had a brilliant time and very glad we did it as it is always good to meet with others who understand. Due to my autistic tendencies I seem to have made a fair few friends over the Internet – this was the second group of people from forums who I had met up with.

Just hope we can get Sqk through this stage of anxiety and that at some point soon my job uncertainty goes away. I have another interview at end of month for a job which if it comes off will be brilliant. I am pretty much where I am to Christmas however as have a 3 month notice period and cannot go midway through a teaching semester – 3 months takes us into semester 1 so will have to wait till end of December unless we get offered a better redundancy package.

Thoughts on today

I have not been to a polling station today to cast my vote as we have postal votes due to (pre-Sqk) usually being away on first Thursday in May. But as those of you on Twitter know I am a support of Remain in Europe although I will acknowledge there are things about the EU I want to see change. However from a personal perspective I would not be where I am today without EU research funding and also free movement across Europe. Nor would I probably have a permanent job. I also know local companies are planning their move to Europe if the vote is remain as they cannot see how they can survive otherwise. The leave campaign want free trade but the only way to get that (within Europe) is (based on Norway & Switzerland) to obey 75% of regulations and to allow free movement with no say on those regulations. Indeed Norway (and other countries who get money from research budget) have to contribute to the EU budget…

I voted before the events in Birstall a week ago – a place 7 miles (by road) from where I currently sit. Last week’s killing of Jo Cox hit me hard – firstly she was an MP I had heard speak on local radio and whose views chimed with mine. Secondly there are a number of similarities between us – northern girls from schools with grammar in their name but not selective who went to Cambridge a year apart; she was only 8 months older than me and her elder child is a very simialr age to Sqk. Emphasises the fragility of life. I have to wander if without the hatred stirred up among (small) parts of the Leave campaign would she still be with us. The fact her killer is being tried under terrorist protocols points to what the authorities believe. An hour ago people held hands in Birstall at the time she was attacked last week – and last night we had the moving tribute to her on what should have been her birthday.

All I can hope is once the result is announced – and I hope it is the one I want – that we can heal the divisions this nasty referendum campaign has stirred up. Like Suddenly Mummy  I live in a place with a diverse mixture that has a population formed on immigration where race relations have been an issue in the past. Round here I am not looking forward to the reaction no matter what the result.