A Day in the life of....autism and the future for Joel

I have a few tips for you when you ask a parent with a child with autism what the future holds for their child and where the parent thinks they will end up.  Stop there.  Please don't ask that question because guaranteed every parent will be very brave and do their best to answer it with the best answer they know how but you know what?  They won't have  a clue.  They won't even be thinking more than six months to a year ahead I promise you.  And if they are spelling out said child's life they will be hoping for the best and the best laid plans are put down but not guaranteed.  They know that.  They will be telling you to reassure you and themselves.

I am asked quite frequently what I think will happen to Joel and I have to be honest I usually say I am only looking into the next six months to a year for Joel's future apart from his education.  This at least is guaranteed for the next two years until he reaches 12.  God willing he'll stay in this educational setting we have fought so hard to keep him in but I can't predict what the future holds.  That's in the hands of the local authority if they approve Joel's place to stay at his current school until he's 16.  He loves his school by the way -   www.stepbystepschool.org.uk .  This school has helped Joel from regressing more into his autism and finally he started to learn when he joined over a year and a half ago. 

I was asked on Friday night what will happen to Joel and I decided to play around with the answer....well I said he's probably going to live on a farm with a few other special needs adults and will have a farm job or something that he'll enjoy and be good at.  But that we would make sure he would have a fulfilling life.   There is a farm near where we live which does cater for a few adults with learning disabilities. Tablehurst Farm in Forest Row is a bio dynamic farm and I don't know the details but think it's a great scheme.  But to tell you the truth I have no idea if Joel will be pushing hay around, milking cows, shearing sheep or whether he'll be capable of sweeping the floor in the cafe there.  I hope he learns all of these skills but at the moment I just am hoping he puts his clothes on the right way.

I have been told about various communities where adults live with special needs and I haven't looked into any of them yet.  I am currently trying to keep my head above water with Joel's current behaviours.  Not sleeping is a biggie.  Last night I had to stay in his bed with him as he woke up at midnight and had a compulsion to keep going into the bathroom next to him and hopping in the shower to the bath to touching the shower glass a few times.  I think he has obsessive compulsion disorder too but that's yet to be diagnosed and it's a given with autism but no-one's ever told me that from the medical profession.  I am still waiting to see a paediatrician in this specialist autism field to help me understand this. 

Joel was so panicked last night that I was stopping him from going back into the bathroom that I could feel his panic attack but was told I did the right thing by his tutor today.   I was stopping his obsession to do this all night which actually makes him wired and even more hyped up.  So I pinned him down and got a very heavy blanket over us and put some music on (classical) and prayed he would calm down.  He did.  I was breathing out loud like they do in yoga classes and then he started to copy me as I told him to breathe.  Then I  literally prayed.  That's all I have left.  It worked for us.  He fell asleep and so did I - creeping back to my bed with with neck cramp at 2am. 

So I hope you can see now why I'm really  not looking too far ahead into Joel's future. A day at a time is all I can manage at the moment.