MS diagnosis in the family

Heading to Cornwall for New Year after having a lovely Christmas at home with my family and brother Harry and sister-in-law Hannah.  I am amazed at how far Joel has come - overall he was very calm apart from the Christmas eve church service where the ipad kept him happy for a while but it all became too much for him so Jake took him out for a walk.  He is happy to walk and the Ashdown Forest meets all his sensory needs - lots of mud squelching, water, fresh air and open spaces.





Jake, Harry, Hannah, Joel and Holly on the Ashdown Forest

Joel on Christmas day walking on the Ashdown Forest

We are all in shock as my poor sister Sian has been diagnosed with MS.  I had done an interview on my radio show at 107 Meridian FM with Murray Ferguson who has MS and is an inspiration to many sufferers of MS in the West Sussex area and beyond.  You can listen to it on this link :-http://snd.sc/wLQOUL 

It makes you appreciate the little things in life that we take for granted.  Walking to the shops, running up the stairs, eating breakfast.  I hope things get better for her but at the moment it's the bereavement part of the diagnosis.  I can draw similar parallels when we received the diagnosis that Joel had autism and Jake and I were in our sitting room in Australia in flight or fight mode.  We were calling our family and friends from the other side of the globe with this traumatic news and we were looking for answers and solutions to  fix the problem.  Like MS there is no cure for autism but there are therapies to help make it better and manage the autism and MS can be managed but it's the initial shock of having a disability diagnosis and getting into the system with the paperwork which is hard.

When returning from Australia three years ago I had to get Joel into the system in the UK and filled out the Disability Living Allowance forms while feeling exhausted pregnant with Max and with Holly age 4. Jake was still in Australia finishing up his work out there and trying to sell our house.  It was a gruelling process and to the system Joel was another figure but according to them he wasn't disabled and it took a year to get the allowance and even a disability parking card took me nearly going to a tribunal even though I showed them I had one from Australia.  Don't ask me how I got it in the end but I did and I had to keep on knocking down the doors.  I even had to get him re-diagnosed here as his first diagnosis was PDDNOS (it means autistic features but not really autistic).  So had another battle on my hands trying to see the specialist autism paediatrician in London and her team who we eventually saw and got severely autistic written on paper which would help with my paperwork.

My sister is filling out the countless forms as will be many more who have just found out they are disabled or a family member is disabled. There is no guide book for autism as far as I can work out the system gives some disabled people more rights and some less depending on which county you're in as far as I can work out it's pot luck and a lot of hard work!  I had to fight to get a social worker initially as I was signed off as it was written that Joel had a good haircut and was presentable and nothing much looked wrong from the initial trainee social worker who came to see me.  (I am going to be adding a blog about middle class prejudice in the autism world soon to elaborate about this a bit more).  We all know it's not about what's going on from the outside and so many parents with children with autism are on the edge.  We were living on the edge in Etchingham when we had no disability allowance and just three hours help a week.  This was hard with a new baby in the mix.  Joel was also regressing heavily into his autism as he was in a temporary placement at a school for disabled children trying to get a statement for him but he ended up being there over a year but the autism provision was poor.  We are so lucky he's now in a school which can meet his severe autism needs.

Thankfully we have a social worker now and more hours help and two nights respite in the week finally as he just isn't sleeping at the moment so that gives us a break.  That's another story but we had to fight for every hour's help.  We need more help in the holidays as all the provision is down at the moment and with children it's tiring at the best of times.  We're getting there but will need to get more help arranged for holidays.

I guess we all have to handle each situation we're given the best way we can and take each day at a time.  When asked where I think Joel will be in the future I say I don't look beyond a year at the most.  I guess this is how anyone with a disability such as MS may look at it.  To keep it in the day and make the best of the situation.  I look at Murray and know he has re-invented himself after an MS situation as he discusses in his Nine Point Plan and perhaps we could all take something from it:-

Murray Ferguson's One Life - Live It! A 9 point plan

1. be at one with yourself
2.make realistic expectations of yourself
3,.approach problems actively and creatively
4. reinvent yourself
5. live in the present
6. participate
7. be willing to ask for help
8. feel the fear and do it anyway
9. see good in all

Happy New Year folks.  Hope 2013 is lucky for you.

Alicexx