Dealing with “nice”

Now this is a real problem for me.  I never know what to do.  You see after 20 years of dealing with autism it’s not often that I’ve had this experience.  I don’t know when it became acceptable to comment on a person to their face knowing nothing about them.  I have to say I am not too nice when dealing with these people, a part of me knows I should try to educate but when you see me with Max especially, any one can see he is different, so the comments don’t seem like questions just an excuse for someone to try to get one up on us.  “that child needs a good hiding!” and my response “oh have you called the Lancet- I’m sure they’d be thrilled to hear your cure for autism”, “there was no such thing as autism in my day”-“was there always ignorance?”.  I’m not especially proud of my replies but I’m sure I’m not the only autism parent who has to deal with this inane nonsense.  I was shopping with Oliver the other day and we were discussing sausages- I say discussing it was me asking if he wanted blue sausages (chipolata’s) or purple sausages (Cumberland).  It was also 6 am and we’d been up since 3am so I wasn’t in the best of moods anyway but some woman overhearing us says to me “why you giving him a choice? he should eat what he’s given” I just replied we didn’t live in a dictatorship and left it at that. But what makes anyone think that comments are appreciated?  When I was little I was taught “if you have nothing nice to say, say nothing at all.”

This has gone on for years, staring I can cope with, it’s not often you see a 40 odd year old woman dragging a 5 year old round a supermarket by his walking reins while he is on his tummy on the floor making swimming motions with his limbs and I’d probably look at that too.  So I can manage staring and I can manage comments (although admittedly not always nicely).  When people are nice it really throws me off.

It was Oliver’s sports day early July, on the big playground with parents invited so the main gate would be open and with him being a flight risk I was panicking in case he got away from his 1-to-1 so I positioned myself ready for the intercept if he went for it.  He cam out with his classmates, sat with Mrs D- his 1-to-1, and waited.  He was winning the obstacle race- until he stopped to wait for everyone to catch up, he cheated at the egg and spoon but won, then came the space hopper race.  He was more enthusiastic than skilled and was well behind, so I was cheering him on and I stopped to draw breath and I heard a group of other mums shouting his name and encouraging him  He eventually finished to great cheers from parents and school friends alike and the look on his face was pure happiness. I wiped away a tear (hayfever-honest) and when it was all over I went to collect him.  So many parents came up and said how well he’d done, how they/d seen his progress over the year and often a story of their child and mine doing something together.  Yes I was in tears on the way home.  These people don’t know how their simple “didn’t he do well” comments affected me, and made me feel supported.

I was in the quick check out queue once in the supermarket when Max was little and the woman in front kept looking at me then him- I got ready to defend us when she spoke I was deflated “would you like to go before me? My grandson gets bored waiting in queues and my daughter has the same look you have.  I don’t want to pry but is it autism?” We didn’t go in front but we had a chat while we helped each other pack up.

When Oliver was a baby I took him and Max to Morrison’s for a few bits.  We’d been doing well on our walks and shopping trips when suddenly Max went into Meltdown mode.  A staff member from the bakery came over and I thought “uh oh we’re going to be asked to leave” but she crouched in front on the pram and kept Oliver entertained while I dealt with Max.  I couldn’t thank her enough.

So I’m not good in dealing with nice, it turns me to jelly and often makes me cry.  I have also developed a face that I call my ray liotta “goodfellas” face

ray

“He’ll eat it if he’s hungry enough”

“just put him to bed he’ll get the message”

“take some time for yourself”

“He’s just spoilt”

I’m sure you get the picture.  I sent it to my daughter when she text me saying “did you get any sleep last night?” the reply I got “lol. ok do you need some help?”  I think the picture just sums up my reaction to insane statements and questions.  I also think it might be more polite than making pithy comebacks.

I just wish people would think- how would I feel if a stranger commented on my life? before opening their mouths.

 

xx

Max

Max is my eldest son, second oldest overall.  Him and his sister Emily have a different dad to the younger two.  The dad wasn’t really interested in us until he had a heart scare a couple years ago then he started to take an interest- that’s led to problems between Em and her dad but they are both grown up they can sort it out between them.

Recently Max has been having a really hard time, his sound sensitivity has got worse and although we have him in a lovely placement now I suppose it’s hard for him to forget his college and last couple of years at school.  He now works in a park that has a café and a “learning room” where he can (allegedly) learn to use a washing machine, learn to wash up, sweep and other household skills.  He didn’t really take to that as he is a lazy little sod at times but as he loves being outdoors he does ground work- weeding and such like, cleans in the café, shops for stuff, gets to drink mugs of tea and has done sanding and paint stripping.  He goes 4 days a week, five hours a day and has a 1-to-1 to support him.  It was going well but I didn’t think about the summer holidays where there would be more children using the facilities, he doesn’t like squeaky children.  A couple of week ago I had to go collect him at lunch as he had hit his head so hard during a meltdown he had made himself bleed.  I picked him up and brought him home, made him a cup of tea and got a jigsaw out. He can’t talk except to make the odd request and every method of communication I’ve tried with him has failed as school and college never listened and never used it so there was no consistency.  Starting from scratch now using PECS and Makaton but it will be a slow process.  I called “work” and told him he was having a week off.  The doctor had previously prescribed some anti anxiety meds (I hate giving out meds ) so I started him on a small dose of it, and ordered him some ear defenders.

He seems much calmer now and he has more control having the ear defenders and I have noticed he sits with the family a bit more- even when Popples is around (she is very squeaky).  Anyway I’m writing this because I was talking to my husband about him the other day and I said that Max is one of the bravest people I know.  He has no language and very limited ways of communicating but he will get up each morning and try to make the best of the day, even though the world is busy, which scares him; it’s noisy, which scares him and I can’t even imagine what it’s like to be in a world that makes no sense with no way of making yourself understood – I’m supposedly neuro typical and I find it difficult to navigate the world so how hard is it for him?  He never refuses to try something (except food) and even though it’s hard for him to be around youngsters I remember all the times when Oliver or Popples have been babies or asleep on the sofa poorly and he has sat with them and protected them when I left the room.  I would love to be in his for a few hours so I could know how best to help him, so I could see the boy I used to know, who was a joker and a daredevil and had a wicked sense of humour- mainly slapstick but still.

He gave me away at my wedding.  I know mum expected me to ask my dad but who else except my gorgeous 22 year old son could have done it?  It wasn’t a traditional walk down the aisle- we lurched and stopped for a flap half way down but who cares?  He looked so smart in his 3 piece suit, all eyes on him but we held each other and d