Wednesday 7 June 2017

Moving house with a child with special needs

There has been so much going on here of late, that I just haven't been able to blog, and I do feel bad about that.

Mostly the feeling bad is just for me, as I know I'm not kidding anyone by pretending it's not my free therapy. There may be one or two people who would like an update on either our SEND story or the house though... will do as soon as I can, I promise! 

In the meantime, here's a guest post from The World of Gorgeous Grace who has been through the similar joy of moving house with a child with additional needs. She managed to write about it though!


Are we really going to do this? The decision making process.

Right from the very beginning, our decision to move was largely motivated by the needs of daughter no. 2, GG, who has an undiagnosed genetic condition – known as a Swan (Syndromes without a Name). A move from Oxfordshire to Yorkshire presented a great opportunity to ensure the support for GG improved and all of our research pointed to a much better level of provision.

We were fortunate to be able to transfer our jobs (and yes, despite best efforts of the system to prevent parents of SN children – we do both work!), so inevitably work location was the centre of the search. However, drawing a circle of an hour’s drive is surprisingly large, outside of the highly congested South East, where congestion is deemed to be a 10 minute delay!

However, that circle soon narrowed when we pinpointed areas within a 30min drive of a special needs school. We researched the 3 schools that were possibilities and very quickly honed in on one – absolutely fabulous – school. We visit, fall in love and our dream school cements the decision to make the dream move. We are going to do this!

Note that I have yet to mention our other 2 children – their needs have yet to be factored into any decision making outside of the knowledge that life in the country would benefit us all

The exciting bit – the house search!

Next step was to list our needs for our forever home search and for GG specifically our list included:
  • A bedroom within easy reach of ours so we can respond quickly to night-time seizures
  • Level floors with no up and down steps, to minimise physical challenges
  • No streams / water sources within close proximity to the house – you will be amazed how many properties are next to water!
  • Stairways that are suitable for stair gates
  • The ability to 100% secure perimeter fences
  • Good pedestrian access that will be suitable for current buggies but also a future adult in a wheelchair – steep hills to be avoided….
  • Preferably an annex as a possible future home for GG to allow us to strive for a level of independence
  • Ideally Stables – horses are GG’s passion  

Considerations for the other 2?
  • A large garden so we can maximise the outdoor living
  • Enough bedrooms so they can have one each

The frustrating bit – applying for schools

#Frustration 1 – Oxfordshire refuse to upgrade daughter no.2 from an extremely out of date statement to an EHCP as she is leaving the area.
#Frustration 2 – Trying to get an updated statement is like getting blood from a stone – in the end I gather the 6 reports needed – physio, SALT, OT, school teacher, paediatrician and (privately paid for) Educational Pyschologist and I actually re-write the statement and send to the SEN officer
#Frustration 3 – The SEN Officer returns the ‘final draft’ to me after 3 months(!) and it is a copy and paste of my re-write, it is quite evident she hasn’t even read it – the upside being that the proposed provision was agreed….
#Frustration 4 – By this point it is 4 weeks until we move. Thank goodness the team in Yorkshire have progressed the school place application with my version of the statement. A total of 6 calls and 20+ emails along the way to answer queries and to keep the process moving as the move date looms large!
#Frustration 5 – an application we started in October is finally approved in early May, 2 weeks before we move, with a later start date than approved.

By comparison for the other 2, we research schools, visit our favourite, agree it works, complete an online form, place approved in 3 weeks – start date agreed.

The Dreaded Medical bit…..

This was the bit that worried me the most – GG is not really too complex medically compared to a lot of Swans however, we still rely on a wide range of NHS services. At a high level this was our medical journey:

Took advice from the school nurse about how the heck do we do this?!

Downloaded the forms from the GP website, filled them in and handed them to the new GP
Make a list (yet another spreadsheet) of all the current consultants – there are 9, other services and therapists – 13 along with address/ phone and email where available
Research the equivalent options in the new NHS Trust and make a list of options
Use the fab Swan network to obtain feedback on the options available to ensure they are best suited for our circumstances
Organised double prescriptions of epilepsy meds so we have enough to cover the initial move period
Inform all current consultants and services of our imminent move
Write to new GP – including spreadsheets of current and preferred future consultants / services / therapists to expediate the referral process
Attend a 1 hour appointment to run through everything and referrals needed – before we have even moved

With one week to go…..

We have visual timelines about the current and new house and school, we spend time daily running through what will happen next week.

We have a decorator set up for day 1 to replicate GG’s Peppa Pig themed bedroom – that will happen before the washing machine is plumbed in.

We have spent a small fortune on playground equipment that will last into GG’s adulthood and can take an adult swing, when really we wanted to replace the extensive range of tartan carpets.

We have a removals company fully briefed on GG and her needs who are working miracles to minimise the disruption to her routine.

Moving house is one of the most stressful life events for any family – add in a child with disabilities and this increases ten-fold. We are going to live the dream and it will be worth it but boy, its hard work.


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