Coming up to 4 years

At the end of July we reached the 4 year anniversary of our approval panel – having a fortnight earlier had the third anniversary of the celebration hearing. Appropriately given I am Yorkshire born as well as living in Yorkshire our ADM approval was on Yorkshire Day. So another year of being parents is almost over – this time 4 years ago we were anxiously waiting for our link meeting.

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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.
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Reconnecting

I wrote on Twitter yesterday about how much both T & I feel we have reconnected with Sqk during this week and a bit away. Sqk and I travelled to train station at Escape in Castleford on Maundy Thursday to meet T after work. Having eaten we then drov north to a caravan site north of Richmond where our caravan is pitched on a seasonal pitch. We stayed here till Easter Monday and then went a bit further north to a site on the cliff to close to St Mary’s Lighthouse in North Tyneside.


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Sensory Assessment

We have been lucky in getting a PASW who gets things moving relatively speaking. From first meeting Sqk in January she got us places for sensory assessment and applied to ASF for funding – and this was all within a couple of months or so 🙂 We attended a training with Sarah Lloyd (local specialist occupational therapist & play therapist) a week and a half ago for a full day on Wednesday. Was us, our PASW and Sqk’s afternoon TA – usually it is SENCO from school but she had been to the training in January due to us going to the same person as @TwoBoysandUs has with her Boyo and the boys being in the same school. So we took TA instead who found it really rewarding – her comment was she wishes she had known a lot of this stuff 3 years ago when Boyo started (she has worked with him as well as Sqk).

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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…

Reflections

Well following parents evening a few weeks back and a meeting with the SENCO & Sqk’s class teacher a couple of Fridays ago, we are coming to the conclusion that we need to chase a diagnosis for Sqk. School once again suggested ADHD but our gut reaction is no .. backed up by his childminder (has been nanny to ADHD children) & my mother. I grew up with ADHD in my life as it is one (among several) conditions my brother has. Reading around and also taking a closer look at recent photos has us suspecting FASD – at least somewhere. So much fits other than his general cognitive ability – he struggles with handwriting but that is a fine motor control issue. His photos show some of the facial characteristics which would fit with what we suspect in that birth mother probably drank before she realised she was pregnant and then stopped.

He has 1:1 support in an afternoon at school and his teacher is doing what she can in a morning but his inability to focus for more than 5 minutes in a classroom is making it hard. He rarely joins in with rest of class – often sits with a Where’s Wally or similar book round corner apparently not engaging. However he is to a degree, given her story of the little voice chiming in from round the corner on several occasions when other children cannot answer question. The school have recognised his need for outdoor time (does help older adopted child in school really needs it), but are saying he is in many ways the hardest of the three adopted children currently in school as he has no learning difficulties as such – just the fine motor issue and inability to focus or sit still.

Between our referral to community paediatrician plus getting PAS involved and school’s approach via school nurse and EDPsych (eventually) hopefully we will get somewhere and find the appropriate therapies and interventions to help Sqk. He has a lot of potential if we can just get him supported and work through these issues. It may of course turn out to be mainly social immaturity but school feel it is more and at the moment we would agree. So on we tread with support of our new PASW who at least is listening and also being new to support team is working with manager in who I have some trust. Just got to hope imminent regionalisation doesn’t effect things.

An update

It's Remembrance Sunday when pre-Sqk I would have attended a service but this morning we are at soft-play to give Daddy chance to do a few jobs around the house. Not certain how much longer I will manage as headachy due to poor nights sleep. We seem to be taking it in turns at moment – Sqk had bad nights Weds/Thurs, DH Fri and me last night. Anxiety still about due to DH's job situation – we had less than a fortnight free of it after I made my decision before his boss asked him to start looking for another job. Sqk picks up on this however much we try.

My work is just a case of keeping head down and finishing out this term. Two more colleagues resigned at end of October (leave end of Jan) which in one fell swoop with my previous resignation has pretty much wiped out robotics & embedded systems… but that is there problem not ours. I believe remaining colleagues will be informed on Wednesday what final plan is – only 7 months since we were told we were being shut down.

On Sqk front, he seems to be coping at school – had my first conversation with a teacher over curriculum this week following a request for a baby photo for science. Turned out to be just looking at how they have changed over the years and she did say the message should have been baby or toddler. I have cunning plans for when inheritance from your parents comes and also round family trees. Parents evening this week so should get a better idea of how he is doing – still behind on writing but making bounds forward in reading and maths (provided you don't want him to write maths down) is what I expect. He had a couple of bad days in assembly this week but then did really well on Friday afternoon when he would have been really tired so normally would have played up. Mind you he has slept he clock round and over e last two nights so is catching up on that lost sleep.

We have been trying to explain the significance of poppies to him – we went to Caernarfon Castle last weekend to see the Weeping Window. Stayed with our two great friends on Anglesey which was lovely. Sqk' weekend highlight however was e visit to Electric Mountain (DeNorwig pump-storage power station) which he couldn't stop talking about according to school & childminder. Gave me a chance to explain electricity generation to him – with his Uncle M's help. He happens to have worked in nuclear power industry his entire career hence they location on Anglesey as he is an important part of the development of the new plant at Wylfa. His husband (and DH's best man) works in path lab for North Wales trust. Made us laugh that it takes B about the 10 mins longer to get to work than M and he goes 3 times as far if not more. As DH says A55 has made a real difference. I will admit that I have been keeping my eyes open for jobs at Bangor Uni as DH loves the area.

Mind you if T gets the job he applied for last weekend we are not moving anywhere. His perfect job came up (combining pharmacy and computing) which would be closer to home then where he is currently plus being a lot more flexible and desk based. So at the moment we have everything crossed for him. If he gets at I might actually not always be doing everything with Sqk during the working weekend gives us a further emergency contact beyond myself and my mother. Be good as my new job means I will be 30-40 mins away as opposed to the current 15-20.

Sqk saw the paediatrician a few weeks back and there is nothing physically wrong she thinks that is causing his fine motor issues. Awaiting an OT referral and have hearing test plus we need to organise sight test. And I really need to get onto PAS about assessment of need as we really do feel much of his issues can be put down to sensory processing. However he is making incredible progress – is now 91st centipede for height having grown 30cm from August 13 to Oct 16. A little concerned over head circumference which is only 9th centile but paediatrician said she thought it in part could be down to him having a flat back to his head as there is little sign of any the issues that can be associated with a small head.

Three years on…

Sqk in soft play today

Friday was the third anniversary of the day we met Sqk. I can still recall knocking on his FC's door and hearing a little voice coming running shouting Daddy, Mummy. Such a great way to meet our son who has changed our life in so many ways. We know we are incredibly lucky in having an adopted child with only a couple of issues – social/emotional delay and suspected sensory processing issues. He is pretty well attached to us and in many ways you would not know he was adopted in any way. He is a boisterous boy who is never happier than when given safe space to run, jump and generally muck around. His social delay is becoming an issue at school as he is struggling with he transition to year 1 although he still loves going to school and is making progress in every area except writing. Ask him something verbally and he can give you a really good answer but he still cannot get it down on paper even though he can also tell you how to form letters etc. They have been doing sentences recently and he is happy enough explaining all the rules but not happy to apply them on paper. We are working with him on the writing but also have a paediatrician's appointment on Friday to explore if there is any reason behind his writing difficulties as he is well behind the rest of the class even taki account of the fact he is a summer-born child. I do now regret not trying to defer his entry for a year although that would have caused issues in Reception due to it being shared space between the two forms. However if we can get the help we need with his writing he is fine academically otherwise apart from not wanting to sit still. He has the odd day when he is attention seeking and the teacher finds it difficult with him & 28 other children. We are awaiting PAS to get back to us having requested an assessment for SPD – prepared if necessary to fund therapy ourselves if ASF restrictions affect us. I really must find the time (& courage) this week to phone PAS as well as orthotics ( for Sqk) and orthodontics (for me) this week to chase things up.

Sqk struggles so much to sit still – manages for a short while when watching TV but then starts wriggling and eventually bouncing between our 2 sofas if in lounge. It isn't ADHD I do know as we have pretty much no sleep issues at all (occasional sleep resistance every 3-4months). I grew up with a hyperactive brother so I am well aware of how that presents. Sqk just seems to be seeking movement input all the time and loves swinging, spinning and bouncing which ties in with all I have read about SPD. I have been looking around and found an occupational therapist fairly locally (town around 15 miles north) who is accredited for SIT, SAI and DDP and who has experience with adopted/fostered children so get the feeling we may be trying to use her. However we need PAS to get back to us first….Made contact and had initial discussion in July so really need to push to see where they are. Hoping once RAA comes into being next April we might benefit from the PAS service in the next city which by all reports is pretty good.

Talking of the next city the move may be back on the cards at some point as T is looking for a new job which is fairly certain to involve him travelling to one of the towns on the other side of the M62 and east of us. My new job is in next city over so we are potentially looking at the east side of that city close to the good motorway links to give us both a better commute. All depends on which if any of the 5/6 jobs he has applied to actually come to fruition. Really hoping that it is one of the outpatient dispensary roles in hospital as that would really suit him. Means moving back to the large multiple who sold his current pharmacy to current boss back in 2012 but his then area manager is now in charge of hospital business for the company so actually works out well. We can but wait and see but that gentleman had been talking about moving T into OPD pharmacist role at the local hospital if the company had won that contract so even 5 years back recognised it was a role that would suit him.

T is being selective about where he applies for jobs – he really wants out of our current city which I can well understand. Bar any birth parent risk it is also not the easiest of places to work – in so many ways I am looking forward to moving jobs to the next city (it is around 3 miles further but avoids city centres) for similar reasons. Our city is on the up but it has a long long way to go.