Monday, 3 August 2009

you just have to smile...

Well if you dont then you may as well just give up now! right?

Alfie has been particularly (tries to find a suitable word...umm) intense (yea there you go) over the past week (or being more precise over the last 286 weeks and 3 days lol) but he has had his moments where i just couldn't help but giggle.

Our neighbour was in his garden a few days ago and Alfie spotted him
"Hello JOHN" he shouts, the name John coming out in Alfies lovely singsong way
"Hello Alfie" John replies.
"It's my birthday JOHN tomorrow JOHN is my birthday"
"Is it Alfie, how old will you be?"
"How old WHAT JOHN?"
"How old will you be tomorrow Alfie?" By this point John is trying his hardest to get away
"TOMORROW John? is MY birthday i be TWENTY Joooooohnnnnnnn"
"Ok well happy birthday for tomorrow Alfie...Bye" John runs as fast as he can into his house
"Byeeeeeee Jooooooohnnnnnn...humph, eeeeeeeek, glaph...weeeeeeeeeeee"

John came round later that day with a birthday card and pressie for Alfie, i explained it wasn't his birthday till Oct, John just smiled and said to give it to him then (bless him)

Today Alfie was on the trampoline, and all i could hear was
"Noooooooooooooo! Go AWAAAAAAAY!"
Thinking it was Alfie being terratorial about the trampoline i ignored it while i fed Tommy his bottle
"i said GOOOOOO AWAAAAAAAAAAY! stupid...Eeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee" the Eeeee was so highpitched im sure glass shattered and dogs, dolphins and bats all over the world committed mass suicide just to escape.
suddenly Lily and Charlie came running down the stairs to see what was happening...Hmm so he wasn't telling them off, Harry was sat next to me on the sofa so it wasn't him either!?!?

Taking Tommy with me i went to investigate...Alfie was running round the trampoline surrounded by about 30 small plastic balls (the kind you find in ball pits) and he was trying his hardest to run away from them, but of course everytime he moved the trampoline dipped and the balls followed him.

So yes Alfie is constantly trying my patience, but then so do his siblings (and their father lol) but i am learning that instead of concentrating on the negative things it is always best to see the lighter side of things.

Monday, 27 July 2009

My god i love them all

Ok so i have been ill...yup the dreaded Swine Flu hit me! thank fully i took the Tamiflu and i am now recovered without it effecting the kids.

So there i am slobbed out on the sofa unable to leave the house because all of a sudden i have become one of the "Unclean" Jas would follow me round the house shouting "UNCLEAN!" (yea thanks love), and unable to move because my body has somehow aged by 80 years and i now feel like a member of the "Hip Op Sect" the house is a tip, and that is putting it mildly...My kids have just broken up for the summer holidays and there are 7 of us in a tiny 3 bed (and by 3 bed i mean 2 bed and a room the size of a wardrobe) house, it is persisting stair rods out side and the kids went on a wrecking spree...unable to handle it a second longer i try getting up to tidy and fall over, much to Alfie's delight as he starts singing "weebles wobble and they DO fall down" so Jas helps me up and ties me to the sofa, telling me to rest...yea like i have the energy to do aaaaanything else lol.

All of a sudden i am waking up, and i swear it is like a scene from Snow white, the kids are all cleaning up around me, and the place is sparkling, seeing me awake they tell Jas who is in the kitchen making me a fruit salad (he KNOWS not to touch the cooker lol) the kids all (when i say all i mean the older 3) shuffle off upstairs but not before i hear "I hope mummy likes it" from Lily. Jas brings in my fruit salad and a cup of much needed Coffee, with a stack of papers, he hands me the papers...and i burst into tears...

My beautiful wonderful gorgeous amazing babies have all done me pictures "Get better soon mummy" "we love you so much mummy" "best mummy ever" and from Alfie "HTRZPQV"...the papers were covered in pictures of flowers and happy families (Lily) Cars and an airport (Charlie) a chicken with feathers and an apple tree (Alfie) and a page full of stick on googly eyes (Harry) Jas gives me a hug and says "the kids waited for you to fall asleep then told me they wanted to make you happy by cleaning up!

My god i love them all so much, they drive me insane regularly but they really are the most amazing kids ever i am so bloody lucky to have each and every one of them.


Becoming responsible adults is no longer a matter of whether children hang up there pajamas or put dirty towels in the hamper, but whether they care about themselves and others -- and whether they see everyday chores as related to how we treat this planet.

Thursday, 16 July 2009

The most amazing support system...Hmm!

"We will be the most amazing support system you have ever had, we will be there for you to help you through whatever life throws at you, if you need us just call and we will be there"

How amazing is that? i was so happy when our support worker said this to us

"But we don't want things handed to us, just when we find ourselves backed up against a wall it would be nice to be able to have someone help to point us in the right direction...or when we are beating our heads against said wall, it would be great if we could have you use your powers to gives us that much needed nudge" I replied.

"Of course, that is no problem!"

That was back in April, she gave us a list of things to do, people to talk to off we toddle doing the things we need to do to make life easier for our 5 children, and ourselves.
The we come face to face with aforementioned brick wall...

Charlie is starting to lash out at school again, in the past week he has punched 3 of his class mates and his teacher, the school (bless their ikkle hearts) know that Charlie isn't a bad kid and they are trying to find a different solution to the one they should take; Expulsion from school, they understand that Charlie is under a lot of pressure at home, and that we are trying to get him seen by a Paediatrician to see if there was any lasting damage from the meningitis.
We are home schooling Alfie as no schools in our area have any spaces for him, as well as looking after the younger 2 babies (17 & 5 months) and dealing with a daughter full of hormones...My mental health issues have kicked off big style, I keep finding myself with my head stuck in the medicine cabinet eyeing up my Citalopram. My house is a mess, i swear there are new life forms growing in my kitchen and my laundry pile is bigger than my house and growing daily (might have to start dressing the kids in bed sheets) Even Jason is starting to feel the strain and for Jason to get to that point it must be bad.

So a month ago i called my Support worker up hoping that she could come round and help in some way, she had mentioned respite for Lily and Charlie so they can get away from the abuse Alfie dishes out. She mentioned sorting out daycare once a week for the younger 3 so Jas and I could finally do a food shop (it has been 2 years since i last did a food shop...My panic attacks stop me from going alone and Jason would buy nothing but cakes/crisps etc)...anyhoo i digress, so i called Kerry up and left a message asking her to contact us asap.

2 weeks pass and we hear nothing, so i call again "Oh she has just left the office can i take a message" so i leave the same message, 3 days pass...still nothing from her so Jason calls we get told the same thing yet again.
This happens a further 8 times at this point i have turned into a complete banshee, i am constantly shouting at the kids and all i want to do is cry...but noooooo! my stupid body decides no tears for you Missy, i have a constant lump in my throat, and i am on the verge of turning Hulk.

Once again i have babbled nonsense but honestly that is how it is in my head, i can't make head nor tail of anything at the mo, and i really do feel like i am going to have a complete nervous breakdown...again! The only thing that stops me from picking up my Citalopram and downing the whole packet in one is...

My gorgeous, exasperating family. God i love them!
We WILL get through this, and we WILL come out even stronger than ever before.

I always say "The journey we are on would be so boring if we all stuck to the motorway, take a B-Road, yea it's bumpy...but my god the experience is amazing"

Love and hugs to you all

Tuesday, 7 July 2009

The lengths some people will go to...

Seriously astounds me.

Once again i will tell you I am very new to the whole Autism (what do i call it?...thing/malarky/issue?) ...*insert suitable name here* i am still learning all the phraseology/terminology/abbreiviations and also i am still learning about all the different treatments/cures/fixes that people will heap upon their child to try and "recover" them.

The things i have read have astounded and sickened me. I am going to pick just one of the "treatments" i have read about to talk about here.

Chelation Therapy; now why would any parent put their child through something that is obviously dangerous, when A) "There is no scientific support for chelation therapy as a treatment for autism" (quoted from...

and B) "Chelation therapy can be hazardous, even conducted with the FDA-approved chelation agents. In August 2005, botched chelation therapy conducted by an ACAM member killed a 5-year-old autistic boy, a 3-year-old nonautistic girl died in February 2005, and a nonautistic adult died in August 2003. These deaths were due to cardiac arrest caused by hypocalcemia during chelation therapy. Only the 3-year-old girl had been medically assessed and found to have an elevated blood lead level and resulting low iron levels and anemia, a proper medical cause for chelation therapy to be conducted.

More than 30 deaths have been recorded in association with IV-administered disodium EDTA since the 1970s." (quoted from the same page as above)

Seriously people how can you justify putting your children at risk like that?

the sooner you stop pointing the finger of blame at vaccines etc and realise that it is genetic the better life will be, stop being so bloody angry at something that can not be changed and embrace it.

I have no issues with anyone genuinely trying to make life better if their child is suffering, but the fact you are willing to take a risk with your childs life over a condition that isn't life threatening...well in all honesty it blows me away.

what lengths will people go to next? if Ms McCarthy or some other Woo follower was to say that rubbing your autisic childs head on the tongue of a shark will cure them...i wonder how many of you would then try it?

But that is stupid and dangerous (i hear you say)...and yet you are willing to go down the CT route, which in my opinion is just as dangerous. (note i did say IN MY OPINION).

Monday, 6 July 2009

My story so far...

So there i was 18 years old, Homeless (Thanks Dad) and stood in the foyer of what could only be described as Hell (AKA St Patricks Hostel) surrounded by Satans minions (AKA Drunk old men)...anyhoo, i am stood there thinking "what the hell did i do to get here?" when a familiar face popped up from around the corner, it was my old friend Jon. Jon took me under his wing and helped me find my feet again, he introduced me to some of the more "Normal Inmates" (and trust me when i say there was nothing normal about the old boy who thought he was doing kung fu on a penguin, or the old boy who thought everyone was Burt Lancaster or even Mad Mark who was stock piling food for when he finally built his ark)...One of these was Shaun, now Shaun was on the more wacky end scale (he regularly conversed with a man made of Jelly) but one day Shaun told me he wanted me to meet his friend Jason...well there was me thinking OK he is going to take me to meet the Jelly man. So off we went to the temporary housing block. He told me to wait outside while he woke Jason up..."what dya mean she is outside?" "Oh god Shaun...gimme 2 minutes then bring her in" Ok, i thought, he sounds real enough, and mighty annoyed...Ooops!

Sure enough 2 minutes later i get dragged in, and there i meet Jason who looks at me with a lazy smile and says "y'allright sweetheart" Well instead of the usual retort of "Who you calling sweetheart" bugger me if i didn't go all girly and blush.

We spent the next few days getting to know each other and sure enough the spark i had felt was reciprocated. After a week we began dating, then one night 2 weeks after we had met, I decided i could so spend the rest of my life with i got down on 2 knees (trust me one knee just wasn't stable) and said "will you marry me?" to which he replied "your kidding me?...right?" Wow talk about knock the wind from my sails "umm i can be kidding" He smiled at me and said "dya know what?...i would love to marry you!"

4 weeks later we were married, we moved out of the hostel and into a half way house while we waited for a flat.

Then in the August just 3 months later, i found out i was pregnant, we finally got our flat and we began preparing for the arrival of our first child.
One the 1st anniversary of us getting together our little lady Lily was born, she was 4 weeks early and arrived in the record time of 1 hour 40 minutes, weighing 6lb 8oz.

Then in 2002 her brother Charlie joined us, again 4 weeks early and in the even faster time of 1 hour 30 minutes weighing 6lb 6oz. However, when Charlie was 2 weeks he became very ill, we took him to the hospital where they did all kinds of tests...we were called into a room and the Dr with the kind of look in his eyes which can onlt herald bad news said "the results of the Lumbar Puncture came back and we have found bacteria in the spinal fluid and also around his brain" My heart stuttered; oh god what did that mean? was it brain damage? "Charlie has Group B Strep Meningitis" all i heard was the word MENINGITIS! and i was off, i jumped up and ran, my legs were pumping (i look back now and imagine i must have looked like Roadrunner, escaping from Wiley Coyote) and i burst through the main doors of the hospital looking for my mum (who had been sitting outside with Lily. Finally after calming down i went back in and found out that Charlie had already started the Anti-Biotics needed to make him better.
The 2 weeks dragged by and finally Charlie was allowed home. It was the best day of my little fighter had beaten Meningitis.

Then on Charlie's 1st birthday i found out i was pregnant again.
Alfie was Born 3 weeks early and at the even faster time of 1hour 10 minutes weighing 6lb 3oz...(Now i must explain that the entire time i had been on different contraceptive pills, each pregnancy was unexpected BUT very very much WANTED)

We moved out of our little 2 bed flat and into Private accommodation, a little 3 bed semi.
Things were going ok. When Alfie was just 8 months old i noticed he was somehow different from his siblings...oh i know every child is different, but he was just starting to stand and one day he fell and cracked his head open on the corner of our fireplace, there was blood all over him and he didn't make a fuss. I ran him down to the DR's and they cleaned him up and put the glue on his cut and not once did he fuss, they told me to keep an eye on him make sure he didn't go to sleep for an hour or so and if he did to try waking him at regular intervals...thankfully all was well and life carried on. Then Lily dropped a pillow onto Alfie's foot and my god he screamed, it was the reaction i had expected from the fall but not from this.

3 years passed and Alfie started going to Pre-school, he didn't join in with the other kids, and he flitted from toy to toy, he never spoke, and was still in nappies while all his peers were being potty trained "it's Ok Leesh...he just might be a late starter" Jason would tell me. The school had to get 1:1 for him as he was becoming uncontrollable, they started teaching him Makaton which he would take to in spats.

When Alfie was 4 i found out i was pregnant again (at this time i was on the Depovera c Contraceptive Injection) what a shocker that one was, Harry was born 10 days early, and after 4 hours 47 minutes weighing 7lb 12oz (which meant we were able to get the anti-biotics into him before birth to counter any GBS...I wasn't offered them with Alfie even though it was in my notes and i told them) he came home and life again was good.

Then due to an Admin error Alfie missed his placement at school...he was put on the list and while we waited we began home schooling (now the whole time i had been asking our HV to put him forward for assessment...but she kept shaking her head).

I went back on the Depo and when Harry was 3 months old i found out i was pregnant again
Tommy was born 4 weeks early in 1 hour 20 minutes weighing 6lb 4oz.

When i was 30 week pregnant with Tommy, Jason had a vasectomy there was no way we were going to trust the injection or pill again. And a Potty training nurse came round to help us with Alfie who at 5 was still in nappies and showing no signs of trying...she tried everything then said to us, have you considered he could be autistic, she reeled off a load of signs she had noticed from Alfie over the weeks...Echolalia/stimming/lining toys up/ lack of eye contact/no facial expression/no speech. She then referred us to an organisation who would be able to help us. We had a pre-pre-assessment and the woman said she believed he needed to be assessed...and you know what i felt relief, finally someone was listening to us!

3 months after Tommy was born Jason and I celebrated our 10th wedding anniversary by renewing our wedding vows, it was the most amazing day...absolutely perfect

Then we had the Pre-assessment for Alfie, he was on what we consider his best behaviour and the DR told us within 20 seconds he knew Alfie was Autistic...i could see he was expecting us to break down and get upset...but all he had done was confirm what we already knew.

It didn't change Alfie, he was still the same beautiful little boy that we had always had, it just made us a lot more tolerant of his behaviours and that brings us to today...

It has been 4 weeks since his diagnosis, and nothing has changed, we are still (a year after he was due to start school) waiting for a school place for him at now 2 different schools, and we are continuing with his home schooling, he is making progress with his speech, and he is still in nappies.

My 5 children are my life, i adore each and everyone of them.
And as for Jason...well he is a saint and i love him with everything that i have.

So there you have it, i went on for a lot longer than i thought i would and i had to give the very edited version otherwise i would still be talking about what happened 10 years ago.
Hope i didn't bore you all too much, i will try and keep it shorter next time.