Cradle Song

Sleep, sleep, beauty bright,
Dreaming in the joys of night;
Sleep, sleep; in thy sleep
Little sorrows sit and weep.

Sweet babe, in thy face
Soft desires I can trace,
Secret joys and secret smiles,
Little pretty infant wiles.

As thy softest limbs I feel,
Smiles as of the morning steal
O'er thy cheek, and o'er thy breast
Where thy little heart doth rest.

O the cunning wiles that creep
In thy little heart asleep!
When thy little heart doth wake,
Then the dreadful night shall break.

William Blake

12 Happy Birthday!!

Sunday, 26 February 2012
I can't believe I nearly missed it!!

Today is my Bloggy Birthday!!  I started writing this blog exactly one year ago.  I went back to re-read that 1st post I wrote and though we've been through major ups and downs, times of hilarity and times of anguish, I'm happy to say that the place I am coming from is not much different from when I started writing.

Other things have changed.  My daughter has grown.  My son has grown (even earning himself a new nickname, replacing the old one he had outgrown).  The Bubs and I have grown.  I've learned more this past year, than I feel I ever learned in college, nay, my whole academic life!!  About myself, about my son's condition and about my husband and the way our relationship works.  I've learned to trust my instincts more.  I've grown thicker skin.

I remember feeling excited when I started this blog, and a little scared.  The same applies now.  I'm excited for my son, for where his journey will take him and I'm still scared for him, and scared for his sister, who I still think is likely to fall somewhere on the Spectrum (and has started the long, drawn out process of being evaluated).  But I've grown into those fears, I think.  I feel better equipped and better able to handle them.  With the knowledge I have now, I think I'll be able to help her more, to hit the ground running in a way I was never able to with my son.

I have found a fantastic online community of people, each with invaluable pearls of wisdom to impart.  Parents and self-advocates who have made me question issues and brought forth ideas that had not crossed my mind before.  People who have given me hope and the confidence to believe in myself and the choices I am making for my family.  People who have imparted invaluable information that has made a real difference to our lives.  (All of it refreshingly different from the "golden nuggets" of advice given by people who had only raised typical children and therefore had no idea about the reality of our situation.  Worse still are the thoughtless, insensitive and callous parental "critiques" given by people who are not, in fact parents.)

The support I have found through this blog, through making those connections with other parents has *FAR* surpassed anything I could have hoped for in my wildest dreams.

Thank you all so much.  I can't tell you how much it has meant to me, to my family and my children.  You guys *totally* rock!  And thank you Jillsmo and Me for being my very first followers and giving me such a warm welcome to the bloggiverse!



0 Yaocihuatl

Saturday, 25 February 2012
Yaocihuatl is a Nahuatl word for a woman warrior.  The Nahuatl language was spoken in Mesoamerica since at least the 7th century CE and the language is still alive today.  The words tomato, chocolate and avocado come from the Nahuatl tomatl, xocolatl and ahuacatl.

The Aztecs believed in various levels of heaven, the highest of which could only be attained if you died the glorious death of a warrior (or that of a sacrificial offering).  They believed it was the way you died that dictated which heaven you would ultimately go to.  Women who died in childbirth were considered Yaocihuatl and automatically got into the highest heaven, since they had died giving birth to a potential warrior.

Little Betty earned her stripes as my little Yaocihuatl today:


The Bubs went out with the kids and my mother to go house hunting while I stayed home and studied.  I was expecting them to be out for a long time, but a short time later I heard the door slam and my mother had come back with The Don.  She didn't really make sense to me at the time, but she did say that Betty was hurt and the Bubs was "pulling in" any moment.

I quickly put my shoes on, went outside and horror of horrors, I saw an ambulance pull up on our street!

My heart dropped to my feet, my hands got shaky and I broke out in cold sweat.  I kept thinking that couldn't be them, that it couldn't be for us and my mind went..  Oh, a million places a second.

The ambulance lady stepped out, took one look at my face and immediately started comforting me saying "it's not so bad, it's not so bad".  The Bubs stepped out with Betty just a limp rag in his arms, but as soon as she saw me, she perked up and reached out for me to hold her.

She snuggled straight into my neck, like she was trying to block the whole world out.  I got into the ambulance with her, and we made our way through traffic to the hospital.  The cut was small, but really deep.  I knew she was okay though, cause once she was on my lap, she kept making eyes at the ambulance lady, initiating "peek-a-boo" games and giggling her little head off.

I'm not so sure about the Bubs though..  He looked deathly pale through the whole thing, the poor guy turned a greeny-grey shade.

Being his ever-loving and supporting wife, I teased him the whole way through. 

The nurses glued Betty back together (I still can't help giggling about that.  Apparently it's common practice and really good for the kids, but I'd never heard of it and kept having images of little super glue tubes **lol**) and gave her a few butterfly stitches.  We kept her under observation for a while and once we were sure she was okay, we took her to bed for a late bedtime...

My little Yaocihuatl




0 Sir Plot-A-Lot - Baby Got Graphs

Friday, 24 February 2012
I found this video posted on Behavior Guy's facebook page. It really gave me a giggle.


2 Open Letter to Panorama

Tuesday, 21 February 2012
Please cut and paste this letter to Panorama (panorama.reply@bbc.co.uk):

To whom it may concern,

I keep seeing reports in the press (either on television or in newspapers) about Autism.  Most of them are either tiny little windows into a handful of families' experiences, or are unsubstantiated articles on possible factors that may cause Autism. (Please see: http://biologyfiles.fieldofscience.com/2011/10/this-just-in-being-alive-linked-to.html).

I would really like to see a report on why it takes so long for children affected by ASD to get the help that they need? 

It is a well known fact that Early Intervention is crucial to an Autistic child's development.  Early Intervention is defined as being before the child turns three.  The way the system is set up here is that doctors are reluctant to begin diagnosing a child under the age of two or three. 

Even if I was convinced that at one year old, my child was showing signs of autism, and I referred that child to a doctor to be evaluated, it would still take 18 months for the diagnosis to come through.  That takes us up to 2.5 years old.  After that, it would take a further 6.5 months for the Statement of Special Educational needs to come through (assuming the parents and LEA agree on the first draft of the Statement, which is rarely the case). 

The best case scenario (an impossible one for reasons I have already stated), is that the earliest a child can get the help they need is at 3.5 years old. 

Early Intervention is always missed in the UK, unless the parents go private.

It would be really wonderful to see this issue addressed.

Yours sincerely,

9 Whismsical Wednesday

Wednesday, 15 February 2012
The image is from one of Chiho Aoshima's pieces


After a lot of ranting, I would like to get back to what my blog was originally intended to be:

**points to the top of the page starting: The celebration of a little boy...**

We have in this country something called "Fairy Cakes".  Maybe they have them in other countries and I just hadn't noticed it yet, but there you go.

Fairy cakes are just really tiny cup cakes.  I love them because they're small enough to be that extra special reinforcer, while not being so big that it takes away appetite or is too full of sugar (and hyperactivity).




The Don doesn't always like drinking his milk.  Even if it's chocolate milk.  Some bribing extra motivation is usually needed.  Since I'm trying to wean him off so much iPad, I thought I'd go with some First-Then action.

A Fairy cake was promised if he finished drinking his milk first.

Unfortunately, sometimes the cake gets stuck to the paper covering and the cake does not come out intact.  That causes offense.  Huge offense.  The Don starts pouting and making whimpering noises.  He threatens to drop it on the floor, or crumble it into little pieces and I give him The Look.




We dance, and he either accepts it and eats it, or rejects it completely and we eventually move on.

Today, when The Look had no effect, I took away the cake before he could make a huge disgusting mess.  This resulted in more pouting and whining, and the beginnings of a tantrum.  I asked him if he could accept the broken cake "yes or no?"  He said "yes", accompanied by a big nod of the head, so I gave it back to him.

He glared at me and whimpered the whole time he was eating that cake.

I don't know why it made me giggle.

Maybe because that's never happened before.  He usually either accepts it or not and we deal with whatever the consequence is (if he accepts it, then everything is fine; if he doesn't, he ends up throwing a huge tantrum).

This time though it was as if he were saying:

"Fine, I'll eat it, but I won't enjoy it."




16 Dr. Sunil Pullaperuma: Part III



I got a call today from Dr Sunil Pullaperuma.  He said his secretary had told him about my complaint.  So I went through it with him again, this time verbally.  I asked him why he would tell me that a 24 hour ambulatory EEG would not be practical for my son, considering that I've spoken to a number of mothers who have had the SAME THING DONE IN THE UK, why he would tell me that we were going to have a 3 hour EEG when really he only ordered a "standard" one that took about an hour.

His response?

"We don't do three hour EEGS."

Confusing, isn't it?  Why didn't he address that in writing when I first got in touch with him expressing my displeasure at having been lied to?

Apparently being blatantly lied to *really* sets me off.  When he said the above to me, guess what?  I completely lost. my. shit. again.  I totally lost it.  The last thing I remember screaming at him down the phone was:

"You lying son of a bitch!  Go fuck yourself!"



I know, great way to resolve conflict, right?  I've already made my peace with the fact that this situation is not getting resolved.

I then hung up on him and threw the phone out of my hand as fast as possible.  (I may have grown up with an anger management issue.  The Bubs, obviously, knows this dark side of my character.)

After speaking to Dr Sunil Pullaperuma (yes, I'm doing the same thing again: seeing how many times I can fit his whole name into a post), I needed to speak to my husband.  So I called him at work.  As calmly as I could, I told him all of the above.  His response?

"You threw the phone, huh?  Is it smashed into a million tiny pieces?"

(We have just recently replaced the phone.  NOT because of me, but because the kids *love* playing with the phone.  I actually haven't had any instances of purposely breaking things for a very, very long time).

Me:  **sigh**  "No, the phone is not broken.  I threw it into something padded. I tossed it.  I lightly tossed it."

And so our conversation continued.  He asked me about the plumber, how did that go?

(We had the plumber came in a fix a broken sink: also NOT my fault.  I know what the Bubs was trying to do, he was just trying to distract me: thank you honey)

Me: "Fine, the plumber was fine.  He fixed the shower head for free.  He was nice."

(If anyone needs a plumber in the South East London area, I highly recommend Lee Heating Bexleyheath: they're quick, efficient and NOT CROOKED).

Bubs: "Oh good"

Me: "We need the Health and Education professionals to be nice , not the plumber."

All I can say is "karma's a bitch", "hindsight is 20/20" and "there's a special place in hell for people like him".




2 Dr Sunil Pullaperuma: Part II

Tuesday, 14 February 2012


I just had the mother of all meltdowns.  I don't think I've ever lost my shit quite like today.  We're talking psychotic-break-bad.



And to be fair, the freaking doctor was just the trigger.  There's only so much pressure you can take.  Only so much fear, so much angst, so much worry, frustration and rage...  Did  I mention fear?

Yes, I fear for my son's life.  For what his future brings.  What will happen to him?  What will happen to him when I'm not around to lose. my. shit. to protect him?  Our brief dabble in the state education system didn't help to allay my fears.

Anyway, I'm rambling.  Back to the title of this post.

I called the Great Ormond Street Hospital to find out exactly what procedure Dr Sunil Pullaperuma (and I use the term "doctor" loosely) had referred my son for and they told me "a standard EEG".

Excuse me?

I had a hard time hearing that since (as I said in my first "Dr. Sunil Pullaperuma" post), I had set up the EEG privately to avoid all the red tape and multiple visits an EEG set up by the NHS would have entailed.  At the time of that call I was too angry to think about asking any questions other than how to make a formal complaint about said "doctor" Sunil Pullaperuma.

I then tried to get in touch with Dr Sunil Pullaperuma through his mobile, but it went straight to the receptionist at The Child and Family Practice.  She was very kind and understanding of my anger at having been lied to about the EEG we had been given, especially in light of the fact that I had explicitly explained to Dr Sunil Pullaperuma that I was going to him as a *private* patient so my son could just have a single, detailed EEG and be done with it.

The main reason for my unwillingness to have unnecessary hospital visits was due to the traumatic experience my son had already been put through at a different hospital.  I had given all this history to Dr Sunil Pullaperuma and he told me that a three hour EEG would be enough to give us the results we needed and assured me that a second EEG would not be needed after that.  Instead (as I already mentioned in that first post about him) what we got was a one hour EEG where my son did not show a single symptom.

Bottom line:  Dr. Sunil Pullaperuma cost me nearly a month's worth of therapy for my son, and caused my son to undergo another traumatic event (only heightening his fear of hospitals) NEEDLESSLY.  (Parents living in the London area, be warned).




After calling The Child and Family Practice, I also called The Portland Hospital, another hospital where Dr. Sunil Pullaperuma (yes, I am trying to see how many times I can fit his full name into this post) works privately, and told them my story.  They just told me to write them a formal letter of complaint.  Which has to be snail mailed.  Helpful.

So after a whole day of barely hanging onto my sanity by a thread, I called the Great Ormond Street hospital again asking exactly how long a "standard EEG" is.  They said it depended.  ????

I pressed them, surely the very word "standard" implies that it does not, in fact, depend.  They immediately became very hostile and said that they don't do "standard" EEGs.  They're either "awake" or "asleep"  EEGs.  I told her my son had an "asleep" EEG, so how long does an "asleep" EEG usually take?  She told me that my son's had taken an hour (thanks for answering the question) and then referred me to the NHS Patient Advice and Liaison Services (PALS).

PALS (I know, ironic acronym) is the only recourse people have to turn to if they have a problem with NHS.  I have called them before and they have either a. not returned phone calls or b. been extremely unhelpful.  Nevertheless, I called them about this issue last Wednesday.  Am still waiting for my call to be returned.

Fun times.

This was inspired by Extreme Parenthood's "Hey Girl" series




2 What a difference a day makes

Thursday, 9 February 2012
Mama Apples wrote a wonderful post yesterday about how despite all the struggles raising a child with extra needs may have, it also brings so much joy, hilarity and a real depth, a whole extra dimension into our lives.  I loved what she said about Noah being fun, loud and completely nuts.

There's definitely a lot of insanity going on at our house.  The Don has learned to dress himself, so he now decides multiple times a day that he's done wearing the clothes he has on and will strip leaving a trail of clothes in his wake, so he can choose something more "suitable" to wear.


We've never really had that problem with Betty though, I mean there has been her whole obsession with shoes, purses and bracelets etc but there has been no taking off of the clothes.



I sent the above pic to Mama Apples yesterday cause it seemed funny to me that she chose that day to start putting The Don's undewear on her head.  Normally she puts her arms through a leg hole and pretends she's carrying around a purse.

Today?  Today was *freezing*  We had the heating on and I was still wearing a winter coat inside the house.  The Whole day Betty was screaming, tugging at her clothes and taking anything she could off (shoes, socks).  Any time I'd change her diaper, she'd fight me with all her strength not to have her clothes put back on.  And this is not different materials or textrues, no different soaps being used, everything is exactly the same.  At some point in the afternoon I lost my will to live fight with her anymore so I just let her do what she wanted to do and helped her with the bits of undressing she couldn't manage.

She preferred her expression of fashion to be this today:


Maybe she's trying to let me know it's time to go back to the beach?



9 Dr Sunil Pullaperuma

People:  THIS IS WHY I KEEP COMPLAINING ABOUT THE MEDICAL SERVICES IN THE COUNTRY I LIVE IN!

For those of you that don't know, I live in London, UK and we have here a funny little system called the National Health Service (NHS).  I call it funny, because it is a JOKE.  If people can afford it, they go private ALWAYS because the NHS is so bad.  People take out loans and second mortgages to avoid the NHS.

So, what's the alternative?  Private Doctors!  Great, right?

WRONG!  So, so wrong.  It seems the private doctors know that people who see them are in most cases DESPERATE.  So what do they do?  They drag things out as long as possible, make you come back again and again for unnecessary appointments etc.  I'm not talking about ONE doctor here.  I'm talking about ALL private doctors.  Or at least most.  I have had a few very rare and very welcome exceptions in the last nearly seven years I have been living here.

Now, onto the title of this post: Dr Sunil Pullaperuma.  I'm too angry to write a full account of this right now, and I need to get in touch with lawyers, the Ombudsman and things like that, but I will give you the last bits of our correspondence (by the way, GOSH is the Great Ormond Street Children's Hospital, and they're great.  They do a lot of good for kids and both my children have yearly check ups for other issues there.  My issue is with the doctor not the hospital.):

Dear Dr Pullaperuma,

I am writing to say I am very disappointed with the EEG my son received.  We had discussed doing a longer EEG (24 hour ambulatory), which you said would be impractical and proposed instead a three hour EEG.  What we received from the GOSH was about an hour's worth of EEG recording.  My main concern when I first got in touch with you was that I wanted accurate results that would not have to be repeated.  Everything I have read about EEGs for children on the Spectrum suggests that at an EEG of at least 6-8 hours should be performed if one desires an accurate reading.  Not only that, but I was informed that the EEG would cost over 350 pounds for three hours and instead it seems we are expected to pay that amount for a third of the time! 

Yours sincerely,



Dear Mrs
I am sorry to here [sic] that you are disappointed with the EEG appointment. The Great Ormond Street provide the best EEG service in London particularly with their recording and reporting service  This is a well known fact all over the world.

It is also known that one could diagnosed [sic] most epilepsies by a normal EEG and rarely need a 24 EEG. If this EEG  is normal we will need to carefully decide before organising a longer EEG [emphasis added] and I can do this after the next week consultation.
Thanks
Dr Pullaperuma


Dr Pullaperuma,

I am shocked - SHOCKED - by your response.  I hope you are not suggesting the GOSH is the best in the world and provides the most up to date EEG services in the world because this is clearly not the case.  The GOSH's Standing within the UK is of no consequence to this discussion. 

My complaint is that I requested  an extended EEG for my son, was offered a 3 hour one for over 350 pounds and what I received a third of that.  Those are all facts.

When I called you I asked for a 24 hour ambulatory EEG because I told you I DID NOT want to have this procedure repeated as it is very traumatic for my son.  You said a 24 hour EEG would not be "practical".  We then discussed a 3 hour EEG and I expressed reservations about it because I did not want to have this procedure repeated and I did not feel a 3 hour EEG would be enough.  Having read up on it, I know that the standard practice in the US (a world leader in the field of ASD) would have been an EEG of at least 6-8 hours.  I am CERTAIN his EEG will come back normal because I held him in my arms as he slept through the EEG and he slept through with no symptoms whatsoever.

I had explicitly told you repeatedly that under no circumstances did I want to have to put my son through a second EEG because of 1. the financial cost to my family, 2. the emotional cost to my son and 3. the logistical difficulties since I have an 18 month old baby girl who is also being flagged as on the Spectrum.

Please be assured I will be pursuing this through the highest channels.

Sincerely,



Dr Pullaperuma,

I am writing to cancel out appointment because I no longer have confidence in you as a doctor.  I feel that you have been dishonest, misleading and I no longer have trust in you as a medical professional.  I no longer wish to have my son under your "care".  I have contacted the GOSH and they will send the EEG results directly to me.  I am cancelling our February 15th appointment and as it I am cancelling before the 48 hour limit, I expect no further charges to be incurred.

Good day.


I'm off now to speak to lawyers about medical negligence and malpractice!  **smiles brightly**
 

7 There's a silver lining here somewhere... There HAS to be!

Saturday, 4 February 2012
So I just had the week from hell.  My deadline for the first test of my new online Behaviour Analysis course was Tuesday EST 11:59PM.  That's 6am my time, so the plan had always been to give myself as much time as possible to study and then take the test on Tuesday evenings while the Bubs looks after the kids.  So far, so good.

Then Tuesday morning, the internet conks out.  Not only that, but my darling children destroyed the only house phone we had.  So I've just sent most of the past week with no form of communication whatsoever.  I've fallen horribly behind in my course (don't know how I'm going to recover now, missed tests, lessons, am behind on readings and watching videos etc).  Guess what the reason for the internet going was?  Some thieving little vandals decided it would be a good idea to steal some freaking cables!!  It took forever to fix.



As is that wasn't enough, we were supposed to have training today.  When I finally managed to get the internet up and running again, I had received a letter form one of our therapists saying that she couldn't work with us because we lived too far away.  This was after we'd already agreed that she would come, had worked out hours, pay etc.  So we ended up having to cancel the training session.

Our Behavioural Consultant decided it would be best for us to assess The Don so we could update his programme and keep it running.  Great.  So we did that.  There were a few price hikes, which was to be expected, I'd been one of her first clients and she's had all the other clients on a higher rate that me.  I'm not being bumped up to match them, but still being bumped up, so the proverbial wallet is extremely displeased.  He was looking meager enough as it was!



The worst news we had this week though was that I asked our Behavioural Consultant to look over Betty and check her out since I was having some concerns.  She said that she was worried about Betty being pretty behind in many areas, mostly to do with speech, but also receptive language and other stuff.  So I've written to the people involved asking to put her on the waiting list...

...And so the waiting game begins again.
The Clod and the Pebble

"Love seeketh not itself to please,
Nor for itself hath any care,
But for another gives its ease,
And builds a heaven in hell's despair."

So sung a little Clod of Clay,
Trodden with the cattle's feet,
But a Pebble of the brook
Warbled out these metres meet:

"Love seeketh only Self to please,
To bind another to its delight,
Joys in another's loss of ease,
And builds a hell in heaven's despite."

William Blake
 
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