Why being an autism parent is akin to being a house elf!

In common with most autism parents the extent of my ‘social life’ is conducted through social media, most notably good old Facebook! Over the past couple of years I’ve made some fantastic friends who I view as surrogate family, we’ve laughed together, cried together, made plans to kidnap male hotties for our very own island getaway if one of us wins the lottery.……well, you get the idea! Today one of my surrogate sisters (and fellow matriarch of our group – don’t worry we keep the younger members in check….yeah, right, I think you all know me better than that by now!) posted one of the most hilarious (and true!) daily round ups I’ve ever read and she has very kindly agreed to let me share it with you Amazons.

So, without further ado I turn the page over to Mrs Dobbie, the house elf …

“Been wondering recently how I’m always exhausted and thought back to what I’ve done today.

6.30am rise and shine! Get The Queen of Sheba (ASD) up. Give her breakfast, then get her washed, clean her teeth, hair brushed, dressed etc.

7.20am she’s off to school. Yippee! Freedom! But first….put the washing on, have breakfast, have verbal intercourse with Mr Dobbie, even though I hate talking to ANYONE in the morning. Quick shower, get dressed for work. Hang washing out.

9.15am leave early as I have a 9.30 appointment with the case worker at Community Care. Lucky it’s in the same building as my work because at 10.20 I had to excuse myself or I’d be late for my shift. Further meeting organised for 9.30am next Monday.

10.28 signed into work. Remind myself not to make eye contact with any customers while I’m on the shop floor, therefore keeping verbal intercourse to a minimum!

1pm time for my 15 minute break. Yahoo! Me time! Oh, but first I have to go to the bank to ask them why they have deducted a $395 admin fee from my account. Have had to make an appointment to see my personal banker (WTF) on Wednesday.

1.20pm have gone over my official break time, but f@€k it I NEED A COFFEE. Am starving so decide to add a nutritious and healthy cream bun to my order.

1.25pm managed to stuff cream bun in my gob in two bites. Gulped the coffee down. Thankfully the barista doesn’t believe in making hot coffee so there was no chance of me scalding myself!

2.05pm Daughter Dobbie calls me with some drama or other. Have to be a bad mum and tell her I’m at work, the place I am at that time every Monday, but she never seems to remember that, so can’t talk to her. Promise to phone her back later on when I get home.

3.30pm knock off time! But first, better buy some groceries, after all I’m in the store anyway.

4.05pm Mr Dobbie calls me while I’m walking home, with 4 quite heavy bags. “Where are you? What’s taking you so long?”. Aww, bless his heart, he’s missing me. I’m hoping by this stage my pretties that you can all hear the sarcasm dripping from me!

4.15pm home sweet home, and if he dares even hint at the thought of a quick ‘naughty’ before the school bus arrives I will f@€king deck him!

4.30pm sitting on my a*$e having a cup of tea and a boiled egg on toast because a gal can’t get too much of the good life!

5pm well enough of being a lazy git. Time to run around like a blue a*$ed fly making sure everything is to the high standards expected of the Queen of Sheba.

5.20pm bring the washing in while Mr Dobbie puts the finishing touches to the queens nightly feast.

5.29pm there goes the school bus horn. No more shilly shallying. It’s all systems go now. She does a once over quick inspection while Mr and Mrs Dobbie anxiously wring their hands in fear of having misplaced something. All good and queenie allows herself to be enticed upstairs for a bath.

6pm bath finished. No time wasters allowed in this house! Back downstairs for a scrummy calorie dense dinner provided by the ever subservient (but only to queenie) Mr Dobbie.

6.30pm the boss has taken herself off to her room. At last! That promised Me Time! Not so fast! Off to the kitchen to cook a huge batch of bolognese. While that’s cooking I decide to make Son Dobbie some corn fritters for his breakfast. Talk of the….in comes Son Dobbie who then proceeds to devour half the bolognese. Oh, and yes the fritters will do nicely for his breakfast. How do I know this? Because he also ate half of them!

7.50pm F@€k the dishes! I’m going to watch an episode of The Killing while working my way through a family bar of chocolate! I know how to show myself a good time!

8.05pm phone rings. Don’t answer, don’t answer, don’t answer. Too late! My melted chocolate covered fingers went onto autopilot and picked the f@€king phone up. Traitorous little b@$tards! F*€k me, it’s Daughter Dobbie! I truly am a despicable mother!

9.40pm unfortunately had to end call as battery on phone was ready to die.

9.41pm get Queen of Sheba’s clothes and schoolbag ready for the morning.

9.47pm that’s it! I’m calling it a day. Pass the kitchen on the way to the peace and sanctity of my bedroom. Kitchen looks like Ragnar and his gang have taken a wooden spoon to it. I’m very tempted, but decide I’ll only hate myself in the morning, so in I go to clean up the debris.

10.25pm. I really need a shower. Nope! My ablutions consist of cleaning my teeth. That’s it! I’m done in!

10.30pm I think I’ll tell the girls all about my relaxing yet fun filled day ”

STOP PRESS – Coffee Snob Switches To Decaf, shock horror!

Yes, you read that right, coffee snob that I am I willingly changed (even if it was only for one cup!) to decaf just so that The Whirlwind could dunk his biscuits!

My New Year’s Resolution

My New Year’s Resolution is to stop putting pressure on and accept ‘good enough’ from both The Whirlwind AND from myself! Can I ask all other #ASD / #PDA individuals and parents to make this their resolution too? Why do we always expect perfection from ourselves, please remember we are only human and good enough is GOOD ENOUGH xxx

Another Statistic to the New Taboo

Another statistic, Susan Dunne, 56, who shared her home with 19 year old autistic son Patrick, lived in the rural heart of North Kerry, Ireland and was found dead in her home.

Autism Activist found dead

Whilst there is very little information currently released the fact that her son’s age and the matching age of the suspect arrested are the same the report appears to hint at a meltdown too far ending in the most terrible of ways. I hope I am proved wrong but anyone who has read The New Taboo will know that this is one of my big worries for The Whirlwind. A child who has violent meltdowns can grow into an adult with no concept of the damage they can do. If my worst fears around this tragic death are proved right I can only hope that the courts are lenient and understanding with Patrick, that it leads to more people admitting that they are victims of parent abuse and that this new taboo is taken seriously at last.

UPDATE: whilst writing this post it has been announced that the man arrested was Patrick Dunne, how I wish my initial suspicions had been proved wrong.

Son Charged Over Death

UPDATE: Further details released.

Let Battle Commence

Loyal readers will already know the struggle I’ve been having with the Local Education Authority (LEA), for new visitors “hello, pull up a chair and take a look at Branded Unteachable , Life In Limbo and Communicating About Mis-Communication ”

So, just as I thought things were reaching a conclusion – we’ve found the perfect school for The Whirlwind, they are confident they can meet his needs AND they have a place for him – the LEA decide to move the goal posts! Based on 6 weeks in a Pupil Referal Unit they now feel he can go back into mainstream school!!!

This is the letter I’ve posted to them in response (I’ve changed names to protect the guilty!):

“Further to my telephone conversation with xxxxx, this morning I would like to formalise my response to your decision not to approach HG School with regards to an educational placement for The Whirlwind.

Firstly I would like to point out that basing this decision on the apparent ‘progress’ he’s made at the Pupil Referal Unit is absurd – he has only been at the unit for approximately 6 weeks and during this time a marked regression in his behaviour has been noted by myself, his morning tutors and his key worker. There have been several occasions where his meltdowns have been so severe I have been forced to cancel his afternoon at the PRU as it would have been impossible for me to physically get him into the taxi (even if the taxi driver had agreed to transport him in that condition!). In addition, I cannot see how the fact he appears to be managing in a classroom with only 8 pupils (including The Whirlwind) and 3/4 staff, part time and with no lunchtime or playtime to contend with could possibly lead you to believe that he will manage in a mainstream school (with or without an Enhanced Resource Unit). As was clearly shown at yyyyy School (in your own departments’ words and those of Autism Outreach, one of the very best schools the LEA has when it comes to being Autism Friendly) it takes a while for The Whirlwind to feel comfortable enough to ‘let go’ within school but it DOES happen eventually and if you insist on placing him in a mainstream school it is only a matter of time before we are dealing with another exclusion and all this stress again, not to mention the damage to his confidence, self-esteem, education and anxieties that this will cause.

In September you contacted DH and AW (both Independent/out of county placements) who BOTH indicated they could not meet The Whirlwind’s needs, as was stated to me at the time you rarely (if ever) contact these schools and usually only for your most complex and difficult to place students, as a last resort. If these schools could not meet his complex needs why do you now believe you have suitable provision that CAN meet his needs?

Since being refused by DH and AW, and due to the LEA not having an appropriate school for him, The Whirlwind has been on your ’emergency list’ that is sent to every mainstream and special school that the LEA maintains, the idea being that if a school can meet his needs and has a place they are supposed to contact you with regards to him being placed there, in addition I told xxxxxxx in September that I would be happy to consider any schools that the LEA felt could meet his needs – the LEA has failed to put forward ANY schools for me to consider. In all this time NO school has come forward to say they can take him so how can you state we have alternatives to HG?

During the meeting at PRU on dd/mm/yy zzzzzz suggested PL and BD as possible placements. The response I received from BD is that they already have two extra students above their capacity in the ERU and could not possibly place another student in a unit that is already over capacity, the response from PL is that their unit is also two students over capacity with two students in their mainstream school who SHOULD be in the ERU that they are unable to place in there and both schools stated that they also have waiting lists for the ERUs. It was suggested by zzzzzz and the head of the PRU that I consider looking at ‘smaller’ primary schools, however all the primary schools I have researched (online and/or by telephone) have class sizes around the 30 pupil mark – as previously stated The Whirlwind will not be able to cope in a class this size and we will end up back in this position again but with TWO exclusions on his record. I have rung around most of the LEA maintained schools with ERUs and they have ALL stated that the ERUs are completely full, in some cases they already have children in their mainstream classes that should be in the ERU and they ALL have waiting lists for the ERU. If you attempt to ‘shoehorn’ him into an ERU that is already over full it is going to be detrimental to the education of The Whirlwind and to the other students. All these schools with ERUs have mainstream classes of approximately 30 students, as previously stated he will not cope with such large classes.

The Statement of Educational Need dated dd/mm/yy states “The Whirlwind can find the school environment overwhelming”, “he finds many situations anxiety provoking, or frustrating and once in this heightened state finds it extremely difficult to de-escalate”, “crowded and noisy places appear to distress him a great deal” – how can he be expected to manage a mainstream classroom?

The SEN also states “The Whirlwind’s outbursts have increased in intensity and frequency…..physically attacking pupils and adults” and “He has hurt children, staff and his mum during his physical outbursts” – his presence in a mainstream class will not only be detrimental to his OWN emotional and physical well being it will be detrimental to other students and staff and place them at risk of harm if his meltdowns are not dealt with appropriately.

In Part 3A of the SEN item 1.3 states “To develop his sense of security and well-being in school so that his identified anxiety is reduced” – placing him in a mainstream classroom will have the opposite effect!

Finally in Part 4 of the SEN it is stated ” Education Otherwise than at school for pupils with complex needs not currently attending school, leading to integration into an appropriate school” you quite clearly state here that he has complex needs, nothing has changed so much since dd/mm/yy that he no longer has those complex needs, so why do you now believe that any of the schools that were unable to meet his needs in mm are suddenly able to meet his needs in mm?

I would ask that you consider the above points, some of which you may not have been made aware of, and reconsider your decision not to approach HG. I must also insist that within 10 working days of this email you supply me with a copy of The Whirlwind’s statement with either a named school OR the type of provision you intend for his placement to enable me to begin the tribunal process if I feel it necessary. As you are aware The Whirlwind will have no educational provision after the Christmas Holiday so time is of the essence.

Sincerely”

Ok, let battle commence…….I’ll keep you posted!