Fred Foundation

My granny who is 98 has a dog called Katie.  Katie died last week and my son doesn’t know what death is and i can’t explain it to him.

He keeps asking every time we visit “Where’s Katie” “Where’s Katie?”

It’s hard because Granny is devastated so i quickly say “She’s gone to heaven”  He replies “Go to Heaven soon?”  I  hope not  i say.

He loves the Alfie books by Shirley Hughes – how do i explain that Alfie in the illustration isn’t real – that he can’t meet the boy in the book and Alfie cant come round to ‘go in paddling pool in garden ?  It is especially hard when you get asked about it every day.

…..It can’t be explained away…yet.

We live in hope..

My youngest son was worrying the other day that he hadn’t done enough for Comic Relief so I said to him  “You do more every day of your little life by looking after your big brother  than all of your friends put together -  so please don’t worry.

Polly Tommey’s new Autism poster campaign based on the old Wonderbra advertisements - hope the powers that be finally sit up and take notice! 

Whatever anyone thinks – at least she is out there - quite literally -doing something!  Go girl!

Went to bed at 11pm last night and saw that his bedroom light was on.

He had been in bed since 8.30pm

He was leaning right out of the window and when i asked him what he was doing - he said ” looking at moon and stars”   How sweet i wearily thought -  i should be celebrating that he can say what they are and is interested in looking at them but then my husband reminded me that he could have plummeted  out of the window whilst we were all asleep!  Must remember to keep all top windows locked too!

Saw some friends the other day who are having to go to a special educational needs tribunal to get their local authority to assess their second child for a statement of special needs.  Their eldest child has  the same diagnosis already so it is a road they have sadly travelled down before.

Fighting the local authority to get their child’s needs met as well as  having to deal with their grief.  It is an all too familiar story…and doesn’t seem to be getting any better.

He had such bad red allergy ‘panda’ rings around his eyes this morning when he woke up.   I have spent all day hoovering his mattress, toys, carpets and wet cleaning all the surfaces and changing sheets.  Fighting the dust is a losing  battle but a severe dust allergy is not an easy thing to be on top of all the time.  The worse thing is the dust -gathering books and the bookshelves in his room. Now must freeze all his rows of cuddly toys on the end of his bed!  Best way to kill dust mites i am told.  Bit of a pain when not much room for them in the freezer!

He couldnt sleep last night so i feel exhausted too.

 He wouldnt get out of bed this morning and said “sleepin!’  Usually he is up and about putting his clothes on in exactly the same order and asking in a terrified voice “What’s happening?”  Then i have to explain the whole week and sometimes have to draw it.  I coaxed him out and he went to the loo and then jumped straight back into bed.  I wonder if something happened at school yesterday or is he indeed just tired - but of course he cant tell me.  Although saying “sleepin” and “Go back to bed” are major breakthroughs to be celebrated when i am less tired!

We are on the home-stretch….one more day then back to school…will be back on next week!

Just read a piece in a  newspaper on-line today about a lady who allegedly killed her ten year old autistic son by making him drink bleach, then tried to kill herself.   My heart goes out to them both.