Discharged from paediatric services.

  • We had an appointment at the hospital on Tuesday.  Now this post may be a bit random at times because I’m still trying to process it.  The consultant has discharged Oliver from the paediatric hospital service aged 5.  There’s nothing they can do for him.

Now on one hand it’s nice to have some honesty but on the other hand it’s 20 years since Max was diagnosed and there’s still nothing they can do?  I know the NHS is at breaking point, so I understand them wanting to lighten their books and get rid of cases where they can’t do anything. But it feels like we have just been basically told to get on with it.  The doctor said “yes his behaviour might be unmanageable now but it may calm down as he grows up.  We have no sleep clinic here it’s miles away and I don’t know how you go about referrals” which made me ask who does know?  Apparently family support groups can help but they are full round here and aren’t really able to help anyone else at the moment.  Social workers are overworked and we aren’t an at risk family so no chance of getting one of them.  School nurse should know more.  If anymore non-autistic behaviours arise see GP for a referral.  The problem is as I learned through Max, is that all behaviours are put down to autism once they have a diagnosis.

I feel quite alone now and that it’s down to me doing the speech therapy work- we have a great ST, he sees her once a month and she has given me her phone numbers so I can check I’m on the right track.  School aren’t doing his IEP’s, he actually got sent home with homework last Friday and asking around it was the same as everyone else’s- Finding Nouns.  So you can guess how well that went down.  I know he’s my child and my responsibility, but surely school should be doing their part as they agreed to take him and the extra funding he came with.

I wonder if deep down I was expecting more from the professionals, if I was expecting science had moved on in 20 years.  I suppose it has in a way because the doctor made sure to point out to me that it was probably something from my genes that made him this way.  It’s always nice to hear that.  We have our first appointment at genetic counselling next month so we’ll see what they say.  I think overall I feel abandoned.  It’s down to me and the ST to reach him and make him fulfil his potential- whatever that may be.  I am not trying to make him conform, like school is, I’m trying to find a way into his world and share mine and maybe meet somewhere in the middle.  I’m trying to find a way to ease his frustration and make him happy.  I’m trying to stop the violence and tantrums and tears.  I’m trying to get people to realise he’s just as important as everyone else and has a voice and rights.  I’m trying to make him know he’s loved, no matter what he does.  I’m not worried he will fail- he can’t, I’m worried I’ll fail him.

He’s different- not less.

 

xx

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