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Friday, 15 January 2010


Follow the roads, paved by your imagination
The addiction, the constant aggravation
And the knowledge of the ever-falling nation
This wall is your haven? It’s rubble!

Turn on your heel, turn back to face front
And grasp, grope, gather all you want
Thought they stood behind you, but they don’t
Nor for a cause that much more noble

Knowing that what is right is wrong is right
Everyone wins, loses, learns how to strike
So evil glinting earnest, ever brainwashed polite
To breach the opposition, just flatter

To holler ‘Fate, I am not yet done here, heed!’
The demons within your sorrow head, freed
For the God-given right to lust and love and need
When death is your time, did you matter?

The beast in your mind is half tiger, half bear
And still half a creature that knows not to care
Pressed forward to fight yet exploited unaware
You resent both the cause and the halter

It is most often, you’re found in great halls on one knee
When the cause you defend is that of a king
Yet six hundred roamers separated would flee
To three hundred who bow but won’t falter


Tuesday, 12 January 2010


This was a mini-adventure!

We were told to be there for paperwork by 8.10am. By 8.30 I was officially annoyed, as we were standing outside in the freezing cold with a distinctly unwell Caleb.

Finally got let in and Nan sat Caleb on a chair.
Caleb said to Nan- "Do you hate Caleb?"
"No", she said, "I love Caleb."
"Then no orange chair. Caleb only likes green!" So, quick chair swap.

The nurse put a cream on the back of his hand covered with a bandaid (to numb the skin for an injection). When bandaids go on, they do not come off. Bandaids are for life. But nurses know best!

LUckily that nurse only dealt with induction. The rest of them were brilliant!
Got in to meet the guy who was going to knock Caleb out who said due to possible epilepsy, they wouldn't use an injection (which stays in the system longer) anyway, so off comes bandaid, the screams echoed for blocks.

Absolutely no problem knocking him out, he didn't mind the mask. About 9 minutes later, they came and fetched me as again screams echoed down the block lol.
"Usually we don't let parents in until the patient is in recovery room," the nurse said "But Caleb is clearly upset."

45 minutes later they FINALLY let us leave, having failed to get him to walk, count or touch his nose.

He spent the day on the couch with his DS... and no tears since leaving the dentist! :) I'm SO proud of him, he was a fantastic boy!

Sunday, 10 January 2010


This has definitely been one of the worst weeks for pain that I've had in a long time. My neck, shoulders, arms and legs are aching, painful and heavy, and Ibuprofen isn't helping. Stairs, hills and slopes are killing me. Sometimes, I can't do stairs unless I sit down and go up backwards one step at a time.

I feel rediculous. I'm 25 yrs old and all my friends are going to town on a Friday/Saturday night, at the very least staying up late and chatting on FB. Andrew has taken over almost every night-crying thing with Caleb and Natalie both. He is talking about giving up work. I am telling myself this is just a very bad week, because if this was forever I don't know what I would do. It has been coming to this for a while, it started with just tiredness, and now, all this. I don't know what to do with myself. Sitting hurts. Laying down hurts. Standing hurts.

Caleb is having a tooth out under General Anesthetic tomorrow morning. He has a huge abscess that the dentist couldn't drain because they couldn't hold him. Andrew will be in work, as usual. He has not taken a single day off since my dx. Thank God I have friends. Social Services were supposed to ring me by the end of last week to tell me what they were going to do for us. No news.

If I cannot care for my children, who will? Andrew can't be left with them as he has no common sense and can't cope with Caleb at all. Andrew can't even be left on his own for any amount of time because he will not eat, bathe or dress.

I am going to try another bath. God, please at least make this pain go. Everything else I'll take as it comes.

Thursday, 7 January 2010

The 'Waiting List' that Caleb is on for Clwyd ASD Unit doesn't exist.

I have a letter from head of section Chris Seacomb saying that Caleb is on said list, and had a call from his boss today saying that list doesn't exist. Caleb's name is written down so that, should all the children on the actual list be placed, they won't forget to consider his name.

I want to choose a specialist independant school before going to Tribunal just so I can cost them loads of money, which is all they really care about anyway.

I would just pull him and home ed, but I don't think I have the energy or mental ability.

I guess the fight just slogs on.

Tuesday, 5 January 2010

A Few Pics!

Guess how much she can fit in her face!

There's a balloon above her head LOL

Of Snow and Swine Flu (Jabs)

Caleb was fine going to school today, which is rare. Then two hours later I had to fetch him because odd white stuff that British people are terrified of was falling from the sky. It gathered on the sidewalks and if someone was not careful, they might fall over and get hurt, which NEVER happens in the rain.

So I fetched Caleb home, the snow stopped, the sun came out and melted it all and that was that. The council is all out of salt/grit, hence the terror of the general public. Even Andrew came home!

Its below 45 degrees, we're all going to DIE! Or we COULD just put chains on our tires, invest in decent four-wheel vehicles and carry on pretty close to normal. Or I could just move back to America, which would probably make a great deal of British people a LOT happier.

Caleb had a swine flu injection at quarter-to-four today. Its now 6pm, and so far, so good. No pain, no calpol and no more moody than usual. That's him.

My neck and legs hurt, I feel sick and I have a headache. The GP receptionist asked for my date of birth to book me in for the Swine Flu injection and I could not remember it. Now everyone who wants to hang out with me tonight, form an orderly line and wait your turns!

I'm in for a hot bath!

Monday, 4 January 2010

Today the GP officially diagnosed me with M.E.

Andrew's assessment has been moved from the beginning of Feb to next week(!) on Caleb's birthday (the 12th)

There is a lot going on right now.

Natalie has been up for nearly 17 consecuive hours. If she doesn't sleep through the night tonight I may be tempted to resort to chloroform.

People with genes like mine shouldn't breed.

Sunday, 3 January 2010

Roll On, Normalicy

Are there profiles of autistic regression?

Caleb's behaviour has been brilliant over Christmas and New Year. There has been NO kicking, biting or hitting, minimal pushing and only a handful of meltdowns. I reckon its the break from school, which is just too much for him (and they know it, although they will never admit it).

BUT. But he's back to one or two word communication, from 'Caleb have juice now' to 'Me drink' or 'Caleb drink'.

The humming, noises and squeaks and squeals are back full-force, and the chanting random (often inappropriate) words.

Caleb will be five on the 12th. Occupational Therapist, Jim, from Clydach Hospital, says not to compare him to other five-year-olds. Or four-year-olds. Or three-year-olds.
I am meant to focus on all the progress he has made. He is, what his SALT calls, semi-verbal, often goes a whole day and night without any toilet accidents and has slowed down on the smearing.
Some kids I know are severe, and they daren't even dream about that amount of progress.

I am looking forward to school starting again. The longer they keep him in his current mainstream school, the worse he gets, and the more they can see that he needs a space at the Unit. Now. Or last year would be good.

Today I am going to the GP to talk about M.E. Perhaps she will say that I can try some kind of drug to feel more 'normal' but based on our last appointment, I doubt it. She seemed to know what she was talking about.

I have loads of phone calls to make today, to catch up from the last month of everything being closed! I better get to it.

A Little Background

Lets start at the beginning. Well, the beginning of us anyway.

I was born in New Jersey, but I never admit that to New Yorkers. My father was a pastor who 'planted' churches. We moved constantly. I had four sisters and two brothers, and all of us were homeschooled by my Mom.
We moved West the year I turned 11, to Montana. A few years later, one of my younger sisters, Hannah, got sick. She and my Mom moved to Seattle, to the Children's Hospital there. They were back and forth for several years.
Shortly after they moved back for good, my parents divorced.
I met my now-husband online when I was 14 and he was 27. When I turned 18, I moved to the UK on a Fiance Visa, and 6 months later, we were married.

Andrew is the youngest of four, his parents divorced when he was 13. He attended an all-boys school and was bullied. A lot. He was always 'different', never had friends or dated, only went out to work and then straight back home again. He lived with his mum until we were married (he was 31 at the time).

We had our first child, Caleb, on the 12th of January 2005. The 17th was our first wedding anniversary.

I suffered some pretty severe post natal depression after Caleb was born. He had what we thought was colic and cried. All the time. Our second year together was probably our worst ever, possibly barring this past year (2009). I knew no one, Andrew worked full-time and I stayed at home. Until I got pregnant, I was working, too, but due to some early complications in the pregnancy, the Doctor put me off work.
We moved out of our 1-bedroom flat into a 2-bedroom house, but I felt even more cut-off there.

Finally, when Caleb was about 9 months old, we discovered Cornerstone Church and started getting to know some people.

When Caleb was 3, I fell pregnant with our daughter, Natalie. I was terrified of having another baby because of my experience of PND with Caleb, but as it happened it was completely different! She rarely cried and our church family got involved from the start, offering support and practical help. One woman in particular, Amanda, has been a lifesaver more times than I can count.

That's a pretty basic outline, but just gives some history of who we are and where we came from.