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

6 I'm so excited! And I just can't hide it!

Thursday, 31 March 2011
♫ I know I know I know I know I want you, want you!! ♫

**lol**  Sorry for letting out my inner dork, but this is really big news!  The friend of the family autism specialist from Curemark (**phew** that was long!!  You'd think I'd give her a nick name already, huh?) I mentioned here and here has come through for us and has arranged/is arranging for us to get Taz a proper diagnosis (not like the crappy ones they do here) and for us to go to an autism center where I can learn a whole bunch of new techniques, strategies etc to help Taz!  My mom, Taz, Betty and I have our tickets booked and everything!!  The only thing I'm disappointed about is that we won't get to spend more time in the States.  It's been 5 years since I've been back and though it might be a slight exaggeration to say I've missed it every day, the truth isn't far off!  Because of how everyone's schedule is, we'll only be there for one short week, but OMG I'm peeing my pants I'm so excited!!

Also, I have got in touch with an ABA supervisor person (there I was thinking all I needed to find was an ABA therapist, when suddenly I find out really what you need is a team with a lead person coordinating, supervising and training every one else!  Pretty crazy stuff) who sounds really really good and she was supposed to come tomorrow for an initial 4 hour assessment, but came down with the flu!!  (Selfish bizich, how could she!!  Juuuust kidding!)  So because of how our holiday timetables are (she leaves in a few days and gets back literally the day before we leave!!  **waaaaah**) we won't be able to reschedule till MAY!!!  But, on the upside, she's going to email me stuff I can start working on tomorrow which I thought was really sweet of her since we haven't even met and she's under no obligation to do anything just yet!  But yeah, things are looking up so...

♫ I'm so excited!! ♫

9 Busy Busy Bee!

Wednesday, 30 March 2011
It's been a while since my last post. I suddenly looked at the chaos surrounding me and realized just how much I've been neglecting the house. So since last week I've done something like:

* 7 loads of laundry plus ironing
*made tons of baby food for Betty, froze it all in those little ice cube tray type things for baby food and separated it all into little plastic bags.
 *cleaning out the double oven (I thought that must have made me lose weight, I was scrubbing like crazy!! But alas, no, still need to use my maternity clothes... **waaaah!**)
*boxed up old baby clothes too small for Betty
*filled out something like 40 pages of the DLA forms (disability living allowance)
*scoured the internet for some kind of ABA for my son.  I ended up writing to over 10 different people/companies and got all of three responses.  They looked a little promising, so here's hoping!!
*I also made a new appointment with our speech and language therapist, Angel, who we're seeing next Saturday.

Another thing that I've been doing is knitting and crocheting!!  I haven't crocheted since I was like 8 or 9 years old, but then I saw this post on my knitting hero's website which really made me want to make one too!!  So I went to the original website the pattern was on, worked out how much yarn I needed, bought the yarn and once I received the yarn I realized I'd bitten off waaay more than I could chew!!  So I went back to making the knitting project which is top secret for now since the person it's for has the address to this blog and I'm now just a little over halfway through the project!!  As for the crocheted blanket, I spent the whole weekend familiarizing myself with the basic crochet stitches and trying to understand the instructions (they're actually really clear, but an idiot like me needed really basic instructions like remember to bind off after finishing a colour and just stupid stuff like that.  I got there in the end!!) so now the blanket is well on it's way!  I need to do about 192 of those little circle thingies and I've managed to finish 8!!  **woo**  Anyhow, I'll post some pics later on.

On another note, Taz is not very well this morning.  He was all sluggish and in a bad mood, refused breakfast and just wanted to watch a DVD.  I realized something wasn't right with him, I never usually let him watch anything before lunch, but I did today.  Then when Betty and I were having breakfast he suddenly came running up to me crying and vocalizing without actually using words, his hand contortions worse than I've ever seen them, so I scooped him up in my arms gave him a big hug and he vomited all over my shoulder and down my back.  Poor little guy kept gagging and retching and I figured I already needed a shower, so I just let him continue till he was done and put another DVD on for him.  Poor little guy...

6 The Critic Gives Two Thumbs Up & A High Five!

Wednesday, 23 March 2011
So after my very own little meltdown yesterday **smooths out clothes and hair in an attempt to appear composed**  I am back to bring you The Critic's report on the dancing video I posted earlier.





His favorite part is when I tell him to be careful of his baby sister, that really cracks him up!

11 I'm sorry.

Tuesday, 22 March 2011

I'm sorry because this was meant to be an upbeat, positive blog about my adorable son and his hilarious antics.  I'm sorry because I really wasn't planning for this blog to host rant after rant of unrestrained vitriol directed at the piss poor health services in our area.  I'm sorry for showing the world my whiny, bitchy, raging, foulmouthed self.

I'm pissed.  I'm pissed because today was our long-awaited appointment to get our son evaluated for autism.  I'm pissed off because I'm pissed off.  I mean, honestly?  What was I expecting?  A helpful and informative experience with a clear cut plan of action and path to follow?  **pah!**  **PAH!!**

OK, so a lot of you may be familiar with "The Autism Evaluation Experience" so forgive me for stating the obvious, but it started off with all of us (parents, maternal grandma) sitting with the "doctor" (seriously, he's not even fit for that title) and watching our son play with the NHS speech therapist though the two way mirror.  (We found out, by the way, how often the SLT has seen Taz in the past 18 months: a grand total of 3 times.  I shit you not.)

Said "doctor" spent the whole play session rubbing his face in his hands, looking at his watch and rubbing his fingers in his eyes.  I caught him just staring into space a few times as well.  At one point Bubs poked me and told me to look at the doctor and he actually had his eyes closed, fast asleep!!   I couldn't believe it and I turned to look at my husband, by which point the "doctor" woke up, realized he got busted and tried to cover it up by appearing busy.  He got up, opened the door to the office mumbling something about how hot it had gotten and then went back to sit down. 

Anyhow, after the SLT play session, he sent us into the room to play with Taz and after that they gave us a 5 minute break before calling us in.  My mother stayed with Taz in the waiting room while Bubs and I went in to speak to the "doctor" and the SLT.  The "doctor" opened by saying they could now diagnose Taz as being on the Autism Spectrum.

He paused.

We waited.

And waited.

I uncomfortably looked and Bubs, then back at the "doctor" like "go on..."  And the freaking "doctor" says "has that sunk in?"  So with huge fucking question marks hanging over our heads Bubs and I are like "yeah..." (go on motherfucker, get to the point) and the "doctor"'s all "so you were expecting that were you?" at which point I went off on a rant about how FREAKING LONG it had taken us to get to this point.  That we had been worried FORFUCKINGEVER about his delays and that there was no question in either of our minds what he had, just how we would get him the help that he needs.  So the doctor goes on.

He gives us (wait for it) a cheap, nasty little print out about what we can do to help our son.  Said printout contains the names and website addresses of organizations like the NAS which I have already scoured from top to bottom in search of any extra little therapy I could get for my son.

With no results, by the way!

I mentioned that we were familiar with most of those organizations and he started to seem just the tiniest bit flustered that most of his ammo had been taken.  Not much though, it's hard to get flustered about something you couldn't give two shits about.  I started to ask questions.  I asked if he could tell us where on the spectrum our son might be and he said no.  That they didn't make that assessment anymore because the kids on the mild end of the spectrum tended to get ignored.  That's all fine, he doesn't have to put it in the report, but knowing where on the spectrum a child is would be useful for PARENTS to know if only for future planning and preparations.  But I digress.

At one point I mentioned his genetic testing.  I'm gonna say as little about this as possible because it upsets me too much.  He actually said to me that they had *some* of the results, but couldn't actually get the results to the genetic testing because either a. the sample had been lost, or b. they weren't able to get enough blood.

Okay, can you say BULLSHIT??

Yeah, that's pretty much what I said to the guy.  I told him about how much that episode had affected our son to the point that we have frequent daily meltdowns surrounding that particular issue: whether it's taking his pajamas off to put his clothes on, taking his clothes off to put his pajamas on, rolling his sleeves up to wash his hands, or even trying to fold his sleeves back so he doesn't drag them through whatever meal it is that we're eating.

Man, pissed doesn't even begin to describe it.  I ranted and railed about how they had screwed up going through one arm and how they turned to the next one, that I had held him down and they had taken as many little FUCKING vials as they wanted and had taken the shit out ROUTINELY.  There was no "oops, that's all we could get I'm afraid" they did what they had to do with a beginning, middle and end, they got as much blood as they fucking needed!

He told us, he actually told us not to worry about it, that it wasn't too important and that it wouldn't have to be repeated at which point I totally lost my cool and tore into him saying really?  REALLY??  The NHfuckingS put him through torture, totally traumatized him thus changing our lives for an unfuckingnecessary procedure?  My cheeks were bright red, I had tears of fucking rage pricking my eyes and the only thing keeping me from screaming the place down was that Betty was sleeping on my shoulder.  In his infinite wisdom the "doctor" had no good fucking answer to give me.

So basically, we left there with a crappy print out directing us to where we *might* be able to find support services (no more than an internet search would turn up) and an "official diagnosis" (which remember, was supposed to open us to the magical world of autism services, which I'M AFRAID TO BREAK IT TO YOU YOUNGSTERS OUT THERE BUT MAGIC DOES NOT EXIST, SANTA CLAUS, THE TOOTH FAIRY AND THE EASTER BUNNY??  Yeah, they're all your parents.)

It was a colossal waste of time except in so much as I was able to realize we're 100% on our own and it's up to me and only me to find some way of helping my son.  Joy.  Joy of Joys.  Cause I'm such a great teacher.  I couldn't teach a fish to swim.  A drunk to booze, a whore to....  You get the picture.

So that was our day.  The only thing that made it better is how stinking cute Taz is.

9 Happy Place

Monday, 21 March 2011
Okay, I don't know if I've mentioned that Taz likes enclosed spaces. He loves finding a little quiet corner somewhere, hiding out for a bit and making it his den.

The other day he was out playing in our garden when it was time to take Betty to bed. I thought I'd better check on him before disappearing upstairs, especially since it had been strangely quiet outside. At first glance Taz was nowhere to be seen and I quietly started panicking. But then straight away I saw where he had got to..





Everything the light touches is mine...

Houston we have a problem

Displaced Persons

We. need. assistance.  Godzilla is trashing our house!

Position secured, missile ready


In case you're wondering, he actually got up through the ramp.  That's right, the bunny ramp.  And yes, getting him out of there was a task and a half with lots of tears and struggling to get free.  It's now turned into his favorite game.  The bunnies?  Not too impressed.

3 Ode to the cold and bubbly

Saturday, 19 March 2011

      _------_
     /        \                DO RE MI DRINK, by Homer J. Simpson. 
    |          |
    |          |               *ahem* La la la la.... *ahem*
    |          \
    |     __  __)
    |    /  \/  \           DO...... the stuff... that buys me beer... 
   /\/\ (o   )o  )        RAY..... the guy that sells me beer...
   /c    \__/ --.        ME...... the guy... who drinks the beer, 
  (              )      FAR..... a long way to get beer...
   \_   _-------'       SO...... I'll have another beer... 
    |  /         \      LA...... I'll have another beer...
    | | '\_______)     TEA..... no thanks, I'm drinking beer... 
    |  \_____)           That will bring us back to...
    |_____ |              (Looks into an empty glass) 
   |_____/\/\
   /         \                 D'OH!
 
 
I found the above jewel here.

So today was a ridiculously long day for all involved. My mom was in town and we went into central London to see her.  We went to our favorite a dim sum restaurant to celebrate the occasion and wow.  I guess that was our first mistake right there.  I don't know why I charge into these situations knowing full well they won't go over well at all.  Bubs and I even had a discussion about it, whether it was a good idea taking Taz to a restaurant.  For some reason we went with "let's do it!" and if it didn't turn out well?....  We would know for next time!  **snort**  Guess we really wanted that dim sum!!

Taz was all worked up, excited about being out and about, getting to take the train and going somewhere other than our local park/nursery/playgroup.  While we waited for our table he was running up and down the stairs, charging through doors etc.  That bit was fine though, it was just when it was time for us all to take our seats.  Taz didn't want to sit down in some boring old restaurant, he wanted to run free, wind blowing through his hair.  As soon as we got to our table and tried to get him to sit down, he immediately went floppy, flailing about the floor and *screaming*.  Reasoning didn't work and after about a minute we had a group of waiters standing around watching and whispering to each other and the people over at the next table giving us dirty looks.  Yes, I know people, we have the worst family in the world **takes bow and encourages standing ovation**.

To the parents tutting:  if you took a picture, it would not only last longer, but you could also frame it, hang it, and use it to remind yourselves daily how lucky you are not to be us terrible parents who break the peace in a place of worship...  Or at least reasonably priced restaurant.

Once the food came he settled down for all of 5 minutes?  But then the squirming and trying to break free started again.  It had never been that bad before because we used to be able to get him to sit in a high chair, so he'd be pretty much contained.  For the last couple of months though, he's decided he's waaay too cool to sit in a high chair and needs his own seat like the grown ups.  Bubs and I *knew* this, but somehow managed to walk into this trap with our eyes wide open.  Anyhow, I ignored everyone around us and tried to keep my Tasmanian Devil under control.  It seemed my studiously ignoring people worked.  They soon left us alone as we scarfed down our food in record time.  Once I'd filled up I took Taz and Betty outside since Taz was getting really hyper and had just woken Betty up from her nap which left her feeling particularly grumpy (read: loud).  My mom was cute though, she was all "I don't think that went so badly, it could have gone a lot worse"...  She's right.  It could have.  Fortunately since it was a Chinese restaurant, there were no knives involved since pretty much everyone ate with chopsticks.

After lunch we went for a walk in a nearby park which was a little easier since Taz had a lot more freedom.  Outside the playground there was a cute little family eating ice creams with their 12-18 month baby in a stroller.  They all had ice creams and Taz just got sucked into their gravitational pull.  He started edging closer and closer to the baby until he was nearly touching the stroller.  He was totally mesmerized, didn't say anything or look at the people: his gaze was fixed on the ice cream.  We had to intervene before he took the last step as I'm pretty sure he would have just snatched that ice cream right out of the baby's hand!!  I thought that was pretty hysterical, but you could see the parents were far from impressed.

My mother had already joined the line to get ice creams and as we pulled him away from the child we asked Taz if he wanted his very own ice cream also making the sign for ice cream (we still use a lot of signs).  I saw the father watching us and when we did the sign for ice cream his eyes nearly popped out of his head.  Seriously?  He's never heard of signing before?  Can't believe/understand why some kids might need to sign?  Really?  Is it that much of an anomaly?  **pffft**  I'm glad we're only on stage 4 of PECs cause I'd hate to think how he'd have reacted to little picture representations of words!  **gasp**  Behold the freakazoid family!!  Anyhow, that was probably one of the highlights of Taz' day..  That and the sand pit at the play ground.  Boy, that kid *loves* sand!!  Unfortunately it was already pretty late when we got there so we weren't able to stay for very long.  I felt guilty about making him leave so early, but as it was we only got home around 6.

When we got to the train station and tried to board the train Taz had another little meltdown.  He was screaming cause he didn't want to get on the train.  I thought maybe it was 'cause we'd forced him to get on the train, so I got off again with him hoping he'd decide to get on on his own terms.  He didn't.  Then Betty started crying so Bubs and I switched.  He got off the train with Taz, trying to convince him it really was a good idea to get on it.  The funny thing was, another train pulled in on the next platform and Taz immediately sprinted towards it because that was the train he wanted to get on.  By this time though we only had a couple of minutes before the train left so Bubs had to carry him in and the other very sweet, very patient passengers had to get an earful of Taz' fury.  Plus Betty wasn't really calming down either so it was an interesting start to the journey.  Fortunately Taz settled down after a little while so it wasn't so bad.  People tend to be more forgiving of little babies having a fit than full grown toddlers that look like they might be 5 years old.  (Funny, Taz is really big for his age, and Betty's pretty small for hers.)

Then we finally got home sweet home.  These were the highlights of our day:



Eating nutella toasties




Eating ice cream




Beer O'clock


DISCLAIMER: It's really hard to take pictures of Taz when he's doing something he enjoys because he could care less about posing for the camera and runs riot like a mini little tornado. I'm lucky I get pictures of his face at all.

9 When to start panicking?..

Thursday, 17 March 2011
This will be my last post before the Day of Silence.

Healthy Me 123

I guess the answer would be should be never.

But that's easier said than done.  I mentioned before I thought Betty might possibly be autistic.  Well, I'm getting more and more sure by the day.  She had started babbling earlier, saying "da da da da".  She'd repeat it when I said it to her and enjoyed showing off her new skill.  I've been trying to get her to say it again for 3 days now.  But she won't.  The most I can get out of her (other than a smile) is "aaaaaah".  Which she's said forever.  And it's more like a groan or a cry than her actually communicating, I mean, it's the sound she's been making pretty much from when she was born.  If it was just that, I wouldn't worry, but she zones out, doesn't always look up when I call her name and often avoids my gaze.  Plus she spends the. whole. day. crying.  She's gotten into the habit of sleeping two 15 minute naps a day and she so needs to sleep more!  I don't know.  I hope I'm just being paranoid, I just don't want things to be more difficult for her than they have to be...

Plus when I took her to the doctor for her weird shaped head he said it wasn't marked enough for him to be willing to treat it, that the hair would cover whatever head positioning didn't fix.  But she's 7 months now and she's got a really big lump above each ear, they kind of push the ears down a bit.  I just get paranoid she'll grow up and really hate them, have a complex about it when I could have done something to prevent it.  The treatment is really expensive, I think I'd pretty much have to sell my soul to be able to afford it, but it really worries me.  I'm going to keep trying the repositioning, see if that helps, but I'm also going to see if I can get a second opinion for it.  When I saw the doctor the first time it was just before the holidays, his practice was a madhouse, there were a lot of distractions and it just seemed to me he ushered us out of there as quickly as possible.   I just don't want her to have a huge complex cause she's got a lumpy head.

The Cart Before the Horse

I dunno, I just hope I'm being paranoid on both counts...

0 For Japan With Love - Day of Silence

There is a day of bloggy silence being organized as a mark of respect for the victims of the disaster in Japan.  This will take place tomorrow Friday March 18th.  There are also fundraising efforts for the same cause.  This has been copied from the organizers:



Fundraising:

For Japan With Love has a direct link on the website to our fundraising page for ShelterBox. ShelterBox was one of THE first organizations asked by Japan to help and were on hand on the Saturday after the quake.  Each large, green ShelterBox is tailored to a disaster but typically contains a disaster relief tent for an extended family, blankets, water storage and purification equipment, cooking utensils, a stove, a basic tool kit, a children’s activity pack and other vital items.
Please check it out and whatever you can contribute will be so appreciated.

Bloggers Day of Silence:

Anyone that has a blog can help out with this one.
The aim is just raise awareness and respect and acknowledge the devastation going on in Japan.
The guidelines are simple.
1.  This coming Friday, March 18th, no posts at all on your blog.
2.  Please post a blog post about what you will be doing this Friday whenever possible in hopes to spread the word and whoever else would like to join in. You all can check out what Lydia of Ever-Ours did for her’s here or how we did ours here and do it your way if you’d like.  We’ll be posting a reminder post on Thursday evening on my blog too.
3. Tweet and Re-Tweet the shiznit out of the link to http://www.forjapanwithlove.com please.
4. Encourage your readers to contribute to donate shelter to Japan.
Whatever anyone can contribute will be appreciated.
Every little helps.
Feel free to ask other bloggers you like to join in on this.  Whatever impact we can make will be so awesome.

0 Behold!!

I know this is pathetic, but I'm excited!!  I've made a new button for my blog.  I was able to make it following these instructions.  It took me a while I don't really want to fiddle with it anymore right now, though I might have to in future because the picture looks a little crowded to me.  I think I was trying to include too many graphics which doesn't look great.  But for now, BEHOLD THE NEW BUTTON!!


Let me know what you think!! Vote yay or nay on the changing!

8 Twinkle Toes

Tuesday, 15 March 2011
Ok, so I'm annoyed at my video taking skills, or lack thereof.

But anyhow, here is Taz.  I mentioned earlier about his dancing and it appears he's discovered it's something he *really* enjoys doing.



The reason I'm annoyed is because at the end of this video, when he slumps against the chair, he looked at me really solemnly, shakes his head and says "no dancing."  Which just cracked me up.  Unfortunately I had already pressed the stop recording button when I saw he was all danced out.  Stupid me.

4 Affirmations Just For Me

Sunday, 13 March 2011
The lady autism specialist (from Curemark) I mentioned here sent us a CD called Affirmations Just for Me: Inspiring Words for Children on the Spectrum.  It's a meditation CD set to music that's meant to bolster the child's self esteem.  Despite my being the granola-eating, sandal-wearing, tree-hugging, long-haired hippy of the family I was pretty sceptical about it when I first received it.  I thought it would be cringe-worthy and terrible, but actually, it wasn't.

I sat down on the couch with Taz, he insisted on holding Betty on his lap and actually sat there for the first 8 minutes of the first track without asking for me to put on The Wiggles or the Monkeys (Babe 2) or anything else.  It was really cute, I sat next to him hugging them both, listening to this lady crooning about how great everything was, how "whole" we were and how good everything felt.  I was just amazed at how he sat there without fidgeting too much, just enjoying the moment.  It was really sweet.  I think it really reached him, even though he may or may not have understood (even heard) the whole thing (admittedly we were laughing through it, he always giggles when he gets to hold Betty, and I got to have some snuggle time with my babies).  After a while he wanted to move around again, but we listened to almost the whole 30 minutes.  Which is a long time for him to be entertained like that listening to soft new-agey music.

6 All things Japanese...

Saturday, 12 March 2011
This is one of the many things I love about Japan:  their knack for cuteifying even something as simple as the boiled egg.  I love bentos and some fabulous examples can be found here.  Taz only started eating hard boiled eggs (after much persuasion) when I used egg moulds on them:


He really loves eggs, especially boiled ones (before he started eating them he loved rubbing their soft smoothness on his cheeks!)  Unfortunately, he also came to the realization that he hates (really *hates*) egg yolks, whether they're soft, medium or hard boiled.  He got into the habit of biting into an egg, seeing the yellow middle, discarding it and then going for a fresh egg to bite into.  It was quickly becoming a habit but we were fortunately able to break that cycle by using a different type of egg mould:


and used it to create not only a yolkless hard boiled egg, but one with an appealing shape, too!



****

Following the news and seeing all the awful stories coming out of Japan has been really difficult to watch.  Not only were they hit by the 5th biggest earthquake since records began (equal to 1,500 megaton atomic bombs or 1,500,000,000 tons of dynamite) that actually raised the ocean floor by 10 m, moved the island of Honshu 2.4 m and diverged the earth's rotational axis by 10 cm, but they were then slammed by a multitude of Tsunami waves, the biggest of which was 33 ft.

If history has taught me anything though, it's no matter what Nature or war throws at Japan, they always come back stronger than ever.  What horrific times they must be enduring right now, I can't help tearing up at all the harrowing news coming through, the terrible stories of survival...  And not...

It's always inspiring at these times seeing people banding together, helping each other out and I hope they stay strong and find a way to move forward through all this devastation.  Our thoughts and prayers are with them.

2 Dancin Queen

Thursday, 10 March 2011
We were listening to music while I concocted a bowl of torture (made dinner) for the family and Taz suddenly started dancing to Pretty Girl Rock!!  Okay, maybe less dancing and more jumping around and spinning (with a dash of flapping thrown in for good measure), but it was the cutest thing!!!  (Shoulda been filming it really, but I guess we'll go with "the enjoyment of the moment" and all that ;) )


The only other time I've seen him dance was a while back when Hubs and I took a trip down memory lane with some The Cure appreciation time.  Taz got all inspired by Friday I'm in Love.

He may be a rock star yet...  And if not, he's my little rock star.

7 Huggies, WTF?

Tuesday, 8 March 2011
I do most of my grocery shopping online.  1. because it's easier than dragging everyone to the store, and 2. because we don't have a car so I don't have to kill myself lugging everything back.

When you buy groceries online, it can be really difficult to check what ingredients are in the stuff you're buying.  If it's not posted in the description, you're basically screwed.

In an earlier post I briefly mentioned that we went to Switzerland to visit my mother at the beginning of the year. I was amazed and really happy to find at the supermarket there a ton of baby products that were clearly labeled "no parabens, no colourings, no perfume, no artificial etc." (you get the idea) so I stocked up on a ton of wipes and creams for the children.

We ran out of wipes just recently and I went online to buy the most natural ones I could find.  Unfortunately, the shop I had a discount for didn't have a wide range of products.  I stupidly thought the "Huggies Pure: gentle cleaning like cotton wool & water" would be the most natural ones.  So, so wrong.  They had parabens in them!!!

I was so angry when I read the ingredients and am never buying anything Huggies again.  Pampers may have a gazillion ingredients in them, but at least they don't have any parabens.

My apologies, I know this doesn't make for riveting reading.  Oh well, at least I tried to keep it short eh?

4 On Springtime and Child Labour

Monday, 7 March 2011
Taz is great, he always thinks that whatever we're doing must be really fun and insists on joining in, whether it's running the vacuum cleaner, wiping surfaces down or loading the washer and dryer. He can always be counted on to "help"!

Taking part in his favorite activity: finding stones to throw in the river!

7 Genetic Testing Trauma

Sunday, 6 March 2011
Taz had genetic testing done November 2nd 2010.  He had had an anesthetic cream put onto both arms beforehand, but when the time came for the nurses to take the blood it was all a bit of a disaster, they had to try various times to get the blood, ended up having to go in the side rather than the middle of the inner elbow and after they had the sample I heard one of the nurses say "oh, that was horrible, I'm sure he felt everything".  I bundled him up to take him home and on the way back gave him treats that I had taken especially to make him feel better.  He was smiling, munching on his flapjacks on the way home and I figured we could put all the unpleasantness behind us.

The next time I had to change his clothes, it was a complete nightmare, he screamed and cried and has hated having his top half naked ever since.  Every time we change him either to get his pyjamas or his clothes on has been a huge battle with full and complete meltdowns.  He even hates having his sleeves rolled up when we have to wash his hands.  Baths (which he used to adore) have been a no go area and we've either had to force him literally kicking and screaming, or we have to wash him down with a cloth, also with hysterical crying.  If he has his arms bare, he'll keep them folded with his hands tucked under his chin in a quasi foetal position.  It's heartbreaking to see a little kid who should think nothing of being naked have such a deep-seated fear and paranoia of it.

We've been trying to rid him of his fear of being naked by alternating rubbing cream all over his body or brushing his arms with a soft brush every night before we put his pyjamas on.  The first times were horrible, it literally sounded like he was tearing his throat apart from the inside out, he was screaming so loudly.  But then he'd just cry normally, sometimes snivel, but always with the arms folded tucked under his chin.  As for bath times, we tried everything: Bubs or me getting into the bath with him and all his toys, having Betty in there with him, or all three of them together.  We even tried to bribe him into the bath by putting Teotl in there as well.  That only worked once and he refused to sit down.  We tried to see if he might accept getting into the bath if he was fully clothed, but that didn't work either, it was a real issue!!

Tonight we tried the bath thing again, he went in with Hubs while I was downstairs with Betty.  I heard really heart wrenching screams coming from the bathroom, so I went up with Betty, undressed her and plopped her in the bath with them. When that didn't work, I decided to get in as well.  We had 4 people in a little single bath, it was pretty ridiculous.  But Taz thought it was funny.  We put a little step next to the bath to let him get in and out of it as many times as he wanted.  Hubs and Betty got out of the bath cause she needed to go to bed, but I stayed in it and Taz was having fun climbing in and out of it.  He eventually accepted staying in the bath just standing and at that point we gave him a popsicle as a treat (and so he'd start associating the bath with good things).  It kind of worked.  And he looked freaking hysterical with his arms all tucked up under his chin, carefully licking the popsicle with it dripping all over his arms and adorable little pot belly.  That had to be the most disgusting bath I have ever taken (he'd also decided he needed to pee in it) and of course I had to take a shower after, but before he got out of the tub, Taz had started rediscovering all his favorite bath toys and actually sat down in the tub of his own volition!!  I know it doesn't sound like much, but after 4 months of screaming any time he went near a bath that was huge!!  I think we really turned a corner.  **yay**

Now we just need to get him to forget about protecting the insides of his elbows the whole time and lighten up when he has his sleeves rolled up or his top off.  Baby steps, but we're getting there!

4 Coming clean...

Taz?  Hasn't even been diagnosed with autism yet...

There's no doubt as to whether he has autism or not, not just from us but from every health professional that has dealt with him (he's getting his final evaluation on March 22nd).  We've even been provided with an autism service you wouldn't ordinarily get without a diagnosis (it's a pilot scheme run by the local Early Autism Service (EAS), we get lovingly called their guinea pigs).  At the same time though, we can't get any other services for him because he doesn't have a diagnosis.

What really gets me seething is that even the pilot scheme isn't at all what they told us it would be.  It was meant to be two hours a week (once at home and once in nursery) for six weeks.  Then we would have a 6 week break to "assimilate" and practice all that we'd learned and then we'd start another 6 week stint only this time moving it up to two two hour weekly sessions at home and at school.  Only that's not at all what happened.  Firstly, during the first 6 weeks we had (they finished last December), the lady didn't go to his nursery every week, she went maybe half the times.  We also missed a home session because of the snow, but that, at least, was understandable.  Secondly, we started the second 6 week stint just last week and it turns out that we're only having one session a week, and it looks like she won't go to his nursery as much either since she wasn't able to go see him that first week because of her "busy" schedule.

I think that wouldn't upset me so much if at least the other services were frequent and/or plain good.  Alas, that's not the case.  I've said before that I have been pushing and pushing for him to get help since he was at least 18 months (actually I've been voicing my concerns since he was 12 months, but since speech normally occurs between 12-18 months I wasn't so pushy at the beginning).  It took until he was about 2.5 to get seen by a Speech and Language Therapist (SLT).  I initially got told that they don't see children until they're 3 or 4 years old, but I managed to get our foot in the door by citing his microtia (even though I knew his hearing was fine).  So the first speech therapist was specialized in children with hearing loss.  She immediately saw that wasn't the case with him, told me she'd refer me to a SLT who was specialized in children with autism.  It took another 5 or 6 months to be seen by this other SLT.  When she finally came, she sat with us, played with him for a bit, gave me a sheet of paper with a few (very unclear, generalized) tips and went on her merry way.

At this point I was desperate.  It had been almost a year later and we'd still got nowhere.  So we bit the bullet and hired a private speech therapist even though we couldn't really afford it.  Veni, vidi vici: she came, she saw, she kicked some speechless butt.

Up until that point Taz had barely said any words and as much as we would try, he wouldn't even try to imitate us either.  This new therapist (let's call her Angel, since that's what she was to us) was OMG just so great.  She worked with him, played with him, talked to us at great length, spent far longer than her allotted time but didn't even charge us for the extra hour (just 10 measly pounds which we were more than happy to part with).  She took pictures of him, us (parents), all the pets and his most familiar objects and then the very next day dropped of a huge package she had made at no extra charge with dozens of laminated cards of these pictures, a laminated book she had made just for him and dozens of laminated memory and matching games with furniture and objects that you would find around any house.  Most importantly she taught us how to help him learn language, gave us support and tons of clear examples of what to do.  Within weeks he was saying so many more words.

Taz can now say two word sentences: "water please", "bread please", "want box", "no eat" and stuff like that.  It's thanks to no one but Angel who knew money was tight, we wouldn't be able to hire her every month, let alone every week and that we were getting little to no support from the services that were meant to be helping him.

I wouldn't be so angry at the State services failing my son if half (yes, half) of my husband's paycheck didn't go in taxes funding this and other bloated and totally inept bureaucracies (don't get me started).  The reason I'm saying this now is because the Friday before last the NHS (National Health Service - meant to be the "Pride of Britain") SLT came for a review.  Once Taz was on her books, I was told he would be seen "regularly" by her.  Though I was never told quite what "regularly" meant.  Clearly, "regularly" meant almost never.  The reason I say this is because Taz has not seen Angel very often.  And once Betty was born, it was a full 6 months before we were able to afford hiring her again.  What did Taz do when he saw her after all that time?  He greeted her with excitement and sat down to do any and everything she asked of him (for the first 45-55 minutes, then he got hyper and lost concentration **lol**).

What did he do when he saw the NHS SLT?  Avoided making eye contact with her, only spoke to mumble almost inaudibly and used barely any of the words that he knew.  He wasn't really cooperative with her and didn't really join in with the games that she tried to play.  She said she noticed that he still can't make two word sentences and doesn't understand two word commands.  Which he so does, he just has no relationship with that woman whatsoever.

So what is the point of the NHS SLT?  Wouldn't it be better that she didn't see him at all (she's made no difference to his life whatsoever, all his speech gains have not come from her) and knocked a few other kids off her "busy" schedule so she could concentrate on a handful of children and actually help them to succeed?  But I digress...

We're reaching a rut now, I can feel it.  Taz has advanced so much, but we're kind of trailing off now.  I don't know how to give him that kick start he needs.  We went to visit my mother in Switzerland at the beginning of last month and got him to see a child psychologist who specializes in autistic children.  She made a diagnosis and recommended he go to a specialist autistic school where they could give him therapies and tons of stimulation as well as 3 or 4 visits to a shrink a week.  I went to my "Local Authority" since the only way I could get him into any of these schools is with a referal, but of course they didn't accept, or even look at her report.  I just got fobbed off with a "you just won't get that, I'm sorry".  Something about limited resources and quizzical look aimed at Taz followed by the question "how autistic is he?"  So because he's not on the most severe end of the spectrum, it's fine to just let him fall through the cracks.

I told the lady from the Local Authority, the lady from EAS and both the SLTs he gets seen by that I was willing to pay for private therapy (hence me going back to work soon) but that all my internet searches brought up nothing.  Where could I go, who could I get him seen by?  In every. single. case. the answer was an uncomfortable silence followed by a shrug of the shoulders: who knows?

I'm at my wits end.  I know, I just know that if we could get the proper help for Taz, he could one day be like all those other "recovered" autistic kids who have the diagnosis, but you would never know it if you met them.  Friendly, sociable, mainstreamed, the lot.  I'm even certain that if we could "recover" Taz, he might even fall into the "gifted" category because his memory is so good and he really is a very bright boy.  He just can't express himself, can't get the words out.  But I don't know where to get the help he needs.  I just feel so ineffective and deflated.  I try really hard to teach him myself, but it feels like we just go round and round in circles and I'm pretty useless when it comes down to it.

So all I can really do is hope.  Hope that my husband will be able to get a transfer within his firm out of this country.  A friend of the family who is an autism specialist has told us that the best places in the world for autism services are the US, Australia and New Zealand.  (She also said that in the States it takes 4 hours to get an autism evaluation and is mystified as to why it's taking them here the best part of two years to finally get on with it.  Fortunately she's taken pity on us and is arranging some appointments for us in New Jersey and NYC to see an autism specialist and go to an autism center where they can teach me new techniques and strategies to help him.  More on that another time...)  Hubs has already spoken to the head of his department and been told that the US would not be an option, but maybe Australia.  And he's also going to start looking, see if he can get a job offer in the US.  But I know those are really difficult to come by and on top of that it would be an uphill struggle for me to be able to get a work permit and help out with the autism therapies.  They'll be expensive so we would probably need the two salaries...

**Ugh**  Sorry for my very long-winded and rambling rant.  I've just had that concussed feeling recently...  You know, the one you get from banging your head into a bloody pulp against a brick wall.

3 Attention: Cuteness Overload

Friday, 4 March 2011
So Taz and I were playing with his Mr. Potato Head this morning, practicing the different parts in Spanish.  When we got to the shoes I said "zapatos" and he repeated "patos" (which means ducks in Spanish).  So I praised him and repeated "ZApatos" to which he replied "sapos" (which means toad in Spanish)!

It's not fair!!  Some Spanish words are really difficult to say!  There are some that he'll choose over English words though, like "silla" instead of chair (he has trouble with the CH sound) and "pulpo" instead of octopus (don't feel the need to explain that one, **lol**).  He's getting really good now with the names for things (Thomas the Tank Engine & Mr. Men characters, farm and some zoo animals, some parts of the body and a few food and drink items), we just need to start getting some verbs into him so he can start forming sentences!  Hopefully...

Anyhoo, then I had to take Betty up to bed for her nap and when I came back downstairs I found Taz sitting nicely at the kitchen table, working his way through a tub of ice cream with a spoon!!  I was really impressed!  (And I'd obviously forgotten to lock the freezer door!)  The last time he did that (quite a while back) he took the ice cream tub, sat at the top of the stairs (to get away from the dogs I guess) and was licking his way through the tub!  So I was really impressed that this time he got a spoon out and sat nicely at the table.  Both times he had left all the doors to the freezer etc closed, so that was pretty good too!  Fortunately he didn't totally freak out when I took the ice cream away.  Yes, there was complaining, and yes, I let him have one last mouthful, but then we had snack time and he sat down with me to eat some cheese.

7 No meltdown, no reaction...

Thursday, 3 March 2011
So...  Today was my first day in, let's see...  FOREVER!!  actually taking Taz to his nursery.  He goes twice a week for the whole day.  It used to be (when he first started out) that he only went one morning a week.  That's when I used to take him.  The problem was I was pregnant with Betty (read: slow, clumsy and not very mobile) and Taz would just meltdown each and every time I went to drop him off.  It was heartbreaking for us both.  So Hubs offered to take him and from the beginning he barely melted down.  He cried a little bit the first couple of times, but then he just accepted it and was fine.  And when I went to pick him up, he'd always throw himself in my arms.  But then in the late second/early third trimester my pregnancy took a turn for the worse and I ended up hospitalized for over a week, then bedridden.  During that time he suddenly had to go to nursery 5 full days a week.  He took it really well, even though from that point on he suddenly started forming big attachments to a specific stuffed toy (he doesn't any more, he stopped doing that when Betty was maybe 3 or 4 months?) 

Once I had the baby and was better, we cut his nursery days down to just two.  When all's said and done, it's good for him to be there, to socialize, to have neurotypical kids model "appropriate" behaviour, and to get used to a "classroom" environment.  Hubs kept taking him and picking him up to give me some time where I could just focus on Betty, since when Taz is with us so much of my energy and focus necessarily goes onto him.  On the few occasions when I had to take Taz because Hubs was sick or on a business trip or whatever, Taz would cling to me and it would take maybe half an hour and a bucket full of tears for me to get out of there.  Heartbroken.

So I've been dreading today a little bit, since Bubs left this morning for his business trip (gets back tomorrow night **yay**) and I would have to take Taz to nursery.  Turns out I needn't have bothered worrying.  As soon as we got into his playroom, he plopped himself down next to the train track and started playing with the Thomas trains.  Didn't even look at me.  Not once.  Didn't react when I got down with him and tried to give him little kisses.  I was all "no hug?  No kiss kiss para mama?"  (Para means for, I don't know why I speak terrible Spanglish to him.  At first I spoke all Spanish to him all the time, but when he started nursery (at 2.5 years, still non-verbal) I started mostly speaking to him in English - since that's what people speak here **lol** - in the hopes that he'd be able to make himself understood, especially when he was thirsty or hungry.  Now that he can more or less ask for a snack and a drink I've been trying to switch back to Spanish but usually end up with a weird mix of the two).  But he didn't even respond to me.  And this is with his baby sister strapped to my back.  He usually gets excited when she's like that cause he can give us both hugs at the same time, he thinks it's funny.  But he didn't even react.  So I just nervously left.  I kept looking back over my shoulder half expecting him to come running after me with tears streaming down his face.  He didn't even look up.  I guess that's better than a meltdown...  But no reaction?  Really?...

0 The Pee and Baby Puke Fairies

Wednesday, 2 March 2011
The Pee and Baby Puke Fairies have come to my house...

The Pee Fairy:
 So this morning Hubs was in a stress trying to leave the house so he could go to work.  Suddenly I heard this angry yell and he comes charging into the kitchen waving his shoe in my face shouting "Does this smell like pee?!"  It did.  Teotl had peed in it.  Apparently that was my fault for locking him out of the kitchen last night.

The downstairs of our house is separated into two parts: the living room and hallway which accesses the front door and the kitchen-diner/playroom (this last bit's all open plan).  There's also a wet room next to the playroom where the dogs sleep and have their food and water.  I've always said that the dogs should sleep in their bedroom (the wet room), but Bubs likes to have them roaming the kitchen as a deterrent to burglars (burglars will be deterred just fine, Astrid always barks if anyone approaches our house and it's not like she could do any more than bark from the kitchen since people are more likely to try and break in through the front of the house than anywhere else).

Anyhow, I went to bed later than Bubs last night, and Teotl, the little weasel, always sneaks out of the kitchen and into the main bit of the house if he can.  He never ever has accidents anymore (he's nearly 4 years old, his last accident was as a puppy).  I think it's far more likely Bubs didn't watch him do his business last night when he took him out before going to bed, anyway, he's lucky it was Teotl and not Astrid.

My fault?  **pffffft**  I don't think so.

The Baby Puke Fairy:
The Baby Puke Fairy isn't as bad as the regular Puke Fairy since she only affects babies.  While this could be a problem in a house with multiples, with our singleton baby it's not so bad.

When Hubs got home from work on Monday night, he took Betty for some Daddy time while I finished making dinner.  Every five minutes or so, he'd come in holding her out in front of him asking if I could wipe them both down, so I spent the evening wiping little white patches off the both of them.  Once everything was cooked, Bubs served the food while I washed her and changed her and put her in bed.  I was back downstairs eating when I heard a strange noise.  I went up to check on her and she was all covered in sick.  I gave her another quick wash, changed her pjs, changed the sheets on our bed and she went to sleep pretty easily after that.

The next day we were in the kitchen and it wasn't so bad, she just vomited over her little table.  No problem, easy to wipe up.  Then she threw up over my shoulder, also not a big deal, a quick clean up operation dealt with that.  A little later on she was on the floor playing with her toys when I noticed she'd been sick again.  So I had to wipe down her toys and clean the carpet too.

We started walking around the house visiting rooms, when she started rubbing her eyes and letting her head drop onto my chest.  I thought she was sleepy and needed a nap so we started making our way upstairs when all of a sudden she delicately puked down my front.  But really down my front.  She managed to aim just right so it went into my shirt and settled in a puddle at the bottom of my bra.  **Ewwww**  So I put her down for a nap, had a quick shower and put on a fresh set of clothes.  She didn't sleep for very long and we were soon wandering round the house again.  I heard her make a strange little noise and thought "uh-oh".  She'd puked down my shoulder again, only this time my braid was unfortunately placed in the line of fire.  Mama needed a shower again.  Only this time Betty wasn't sleeping, and she gets very impatient very quickly.  I spent the whole shower trying not to slip and crack my skull while I was dancing around, pulling stupid faces and singing my heart out to tunes like "how much is that doggy in the wondow", "the itsy bitsy spider" and other such classics.  She was bright red and bawling by the time I'd finished, so I just dried my body and tried to calm with my hair still sopping wet.  Well, that was preferable to dripping puke I guess...

Anyway, she still threw up a couple of times after that, fortunately they were easier to contain.  This morning she was fussy during breakfast again so we cut it short, and she threw up a little bit over her chair.  So all I have to say is Jillsmo, could you please tell the Puke Fairy she forgot her baby sister?  And I want her out of my house.  Mmmkay?  Thanks.

0 Nummy Beahs!

Tuesday, 1 March 2011
Taz has always been a ridiculously picky eater.  Even getting him to take his vitamins has, until recently, been a total nightmare.  We have 5 different kinds of vitamins at home and he's refused each and every one.  Even the liquid one we try to hide in his yoghurt.  We've had gummy bear vitamins for some time, but up until now the most he would do was allow one into his mouth before spitting it out.  The gummy bears come in packets of 5 and he has to eat them all to get his recommended daily allowance.  He's so cute, he's suddenly developed a deep (and hopefully enduring) love for these "nummy beahs!" and will jump around the room shouting "nummy beahs!" until he gets them.  Getting him to take his vitamins has finally become easy!!
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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