Demolition men

I am usually abruptly awakened each morning. Around 6:45 (ish) with a thump of a baby bottle in the head which has been hurled from the cot followed by Diddles hopping into the bed beside me saying "Good morning" on repeat until I say "Good morning", and I realise I was dreaming and I am not in the jungle eating "daddy long legs". This time of morning is despite numerous encounters through the night of pacing the landing back and forth to Diddles room. Needless to say there is no room for a snooze button in our house! As much as you would like them to the little darlings are not going to wait for you to wake up. It is almost like someone shouting "GO!!" without giving you a "Ready, Steady" first.

I have recently been introduced to visual aids for dressing, toileting, teeth brushing etc. I have been introducing them to Diddles and he gets the concept but if he does not like the routine it is almost impossible to get him to do it. For example brushing his teeth. He used to be fine with this and now every single morning guaranteed if he catches sight of  a tooth brush he will bolt out of the room and hide. We think this might be a sensory issue with him. Someone has suggested an electric toothbrush so I am going to try this and pray that it works. The wrestling match every morning is getting old now!
So far visuals have reduced the morning meltdowns. I have actually found myself with extra time in the mornings before Diddles is picked up for school. I am definitely a fan! Why did I not know about these sooner??!!

When Diddles is in school I still have demolition man numero dos!
My poor house! Will it ever be safe from my own little Demolition men? I can literally hear the sigh of relief through the house as they finally drift off to sleep at night! Or that could be the neighbours!!

Madman as we like to call him lately seems to have hit the terrible twos' at 18 months! He leaves a trail of destruction behind him where ever he goes. His most recent venture was pulling the first two rows of buttons off my laptop. I stepped out of the room to put something in the dishwasher returned to find him waving at me sweet as pie smile on his face "Hi Mammy" he says. While standing over his art work.

Thank god for paint testers they sell in D.I.Y stores because the artwork is starting to take over! I found lovely luminous pink highlighter pen like train tracks up my hall. It was at two different heights on the wall. The little angels are in this together! They are tag teaming me!

I also found another masterpiece on my kitchen wall and one behind the curtains in my bed room.

The gas thing is they are never out of my sight and yet they manage to do this?! Little masterminds in the making!!

ASD is not a spectator sport!

A spectator sport is a sport that is characterized by the presence of spectators, or watchers at its match. There have been many trips to the bank, post office, supermarket and especially restaurants where other peoples stares have the ability to push you over the edge into crazy town. You literally want to turn around to the audience that has assembled and plead your innocence that you are not a bad parent and he is not a bold child. Granted there are so many people who sympathise and that is due to their personal experiences or awareness campaigns or a friend of a friend who had a child with autism. However there are still so many people who are completely oblivious to the concept of Autism. In particular the older generations, you can hear the tuts and sharp comments like "some parents just can not control their kids these days". These are the people who assume children are lunatics due to parents overdosing them with sugar and allowing their televisions to raise their children. It is not like you can start an Autism awareness meeting in the middle of a queue for the post office. "Everything that irritates us about others can lead us to an understanding of ourselves."

One particular incident I remember is when I had to run into the supermarket to get pullups for Diddles. I was eight months pregnant at the time and Diddles refused point blank to get into a buggy or trolley. He wanted to walk which was ok but I knew I would have to be quick about it. Well.. as quick as one could be when sporting a big baby bump and an autistic toddler in tow! I got to the shopping aisle found the pull ups and waddled to the check out. Diddles then seen a forklift, heard it beeping and screeched like someone had just broken his big toe! He darted away from me to the front of the shop. I ran after him. It felt like forever before I reached him. When I did, he was lying flat on the floor with his hands covering his ears, humming. No eye contact, if I touched him he screeched. At this point everyone in the shop was staring, it seemed like check outs and everyone had stopped. If anyone has ever just wanted the ground to open up and swallow them this was that moment. I could hear one of the older women at a till saying "God love her, she hasn't a clue".

The beeping stopped and Diddles stood up and just carried on as if nothing had happened. I was so embarrassed and had no explanation for why he had just done that. Then as we were leaving, the forklift made another appearance and Diddles fell to the ground again. I tried picking him up but his body went limp. He was a dead weight and I couldn't lift him. It took all my strength but I managed to pick him up. I carried him out to the car without the pull ups. Sat in the driver seat and just cried. "What have I done wrong?" was the only thought going through my mind.

At this point Diddles was on a waiting list and had not been diagnosed with Autism. Comments made like that really hit home because you are clueless at the beginning. The word Autism to me then, if someone had of asked me to explain it I do not think I could have desribed it as much more than a disability. At 23 years of age I had never encountered it in my lifetime. Now almost two years later I am still only tipping the iceberg when it comes to Autism. Every child is different so you need to go on your own initiative when it comes to parenting them.

Essentials when I go out with Diddles just incase...

• The IPOD. The single most calming and distracting thing that keeps his attention
• Toy cars/airplanes/trains
• Juice
• Snack

We have come a long way since that particular incident, in that we now know what the problem was. It was a combination of sensory issues and lack of communication skills. Diddles had only a handful of words at that time. His verbal skills and understanding are much improved. We work on them everyday. I live for the day when he starts a conversation with me. I have no doubt in my mind that he will get there.

All hallows in Autieland!

Halloween has always been my favourite time of year. Ever since I was a little whippersnapper I thought the night was magic. I loved dressing up and hearing ghost stories and playing games. Are you afraid of the dark? was probably the TV show that kick started my interest in horror/fantasy as well as the Goosebump books by R.L Stine. As I got older I loved horror films right up until I became a Mammy and now I am the definitive Wuss! I have this aversion now to the films I used to really enjoy. I loved to sit in and watch Nightmare on Elm street or the Amityville Horror or the Shining but not now I would be hiding behind the couch or sleeping with the lights on for a week! I know how strange it sounds but it is true, I have to really hype myself up by telling myself it is not real, they are just actors and that is just ketchup! Then someone says it is a true story and que the sleepless nights.

It is funny how your perception changes. Now it is all about showing the kids the magic. You really have to approach Halloween with caution when it comes to kids on the spectrum. Some of them are terrified by masks that other kids wear. They do not always grasp the concept of dressing up and the whole thing can be very confusing and frightening. I know with Diddles there is no way he would wear a mask probably because of the echo he would hear with it on or the feel of it against his skin. We really had to work him up to wear the costume this year. Barry had to play flying games and let him bounce around the place a bit before the costume could go near him! He was Buzz Lightyear and Madman was a crocadile. We had them all dressed up and kids started calling to the door. They then were disgusted because we were giving these strange little monster kids all of their sweets. So we had to get a move on before they might have taken the sweets back from some childs trick or treat bag. We gave them their own little loot bags and ventured out to visit our neighbours in the hope that Diddles would enjoy it and not become anxious with the variety of costumes on the other kids or the echo of fireworks. He was grand, both of them were delighted with themselves. They got the idea after two houses. Ring the bell, wait and get sweets. Not really surprising they became pro trick or treaters after 10 minutes or so. The only thing missing was that neither of them were saying trick or treat. Diddles if he said anything at all was saying "trick or tea" and Madman just kept saying "Cheeeeese" as if posing for a photo! Still they did well! It was a good night for them.

You learn something new everyday!

Since I have finished up work I have been attempting the domestic goddess role. This gluten free dairy free food is bloody expensive so I have been looking up recipes in an attempt to save a little on the shopping list.

I have mastered pizza bases and bread which is seriously an accomplishment for someone who was not totally sure about boiling an egg a year ago. Honestly ask me about any gadget be it ipod, laptop or fixing an internet connection great but ask me how to cook a meal from scratch and you would get recipe for disaster. Instead of home economics in school I took Technology.

 I'm not bad now but I still have the odd (giant) hiccup aka Blonde moment.

 For example a few weeks ago I was attempting to make chocolate muffins for Lukes lunch for the week. I found the recipe on a gluten free dairy free website. Thought I was following it to a tee. Until I checked on them 10 minutes after putting the baking tray in the oven and I square to bob my oven was covered in this brown ooze. It was on the top, on the sides and the bottom and expanding by the nano second. I had no clue what I had done wrong. The other half came in to see what I was giving out about and started breaking his heart laughing at me. I read the recipe twice over again until I realised I had used BREAD SODA instead of Baking powder. If you ever want to make inedible chocolate ooze I'm your woman!!

Aside from the hysterics of my Kitchen, I have been spending the rest of my time trying to find new games to get Diddles talking. What I love about these games is Madman can join in. They are both learning to take turns and learning a multitude of new words. We have moved on from the Balloon game which I had mentioned in an earlier post, we do return to this about once a week to mix up the routine. However right now we are playing the blanket game. We took down one of the kids duvet covers and lay it out on the floor. Both of the boys jump on it and then we decide that Madman takes the first turn. (He seems to be the most impatient at the tender age of 17 months) He lies in the middle of the Duvet, I grab one end and Barry will grab the other end. We say "ready steady go!" or "on your marks get set go!" or "3,2,1 Blastoff" mix it up every time so we use as much language as possible. Then we swing the duvet from side to side (narrating the whole time everything we are doing). Next we ask "want to go fast or slow?" Now, for Madman he just says GO! but he is taking in everything and loving the game.  Diddles will obviously want to go fast and this is why we give him "fast" as the first option as a big percentage of the language you will hear from Diddles is immediate Echolalia i.e he echos the words you say directly back to you but does not necessarily understand what you have said.

To test his understanding you give him what he asks for and not what you know he wants. This is so he realises the actual meaning of words.It is a long process but he is beginning to get the gist. He watches the game with Madans turn once to be sure its safe and then he gets the confidence to try himself . In some way Madman is his guinea pig. Not sure if that's a good thing or bad thing yet but its all trial and error!

They remind me of coyote and roadrunner at the moment. Diddles being the roadrunner and Madman being Coyote. Diddles runs back and forth for his usual sensory stimulation and Madman thinks this is a game and follows him back and forth. Madman bless his cotton little socks is just never fast enough to catch Diddles. He thinks his big brother is the king of chasing. They seem to have simultaneus bruises lately, both running and one will fall and then the other. Brotherly love ay!

The games have brought out some spontaneous speech with Diddles. He wakes me up in the morning with "Good Morning", he says "I want some juice please" instead of "Juice please"and Madman is copying everything he's really trying his best. We're making progress slowly but surely! They never cease to amaze me!

A typical hectic school morning ..........

The last few weeks have been a tad hectic. Diddles school had their official open day for the new autism unit. His teacher nabbed me the day before as I was collecting him and asked that I say a few words on behalf of all the parents. I am soooo nervous when it comes to public speaking. The minute she asked me this I felt my heart in my shoes!! She had mentioned the week before that if none of the parents came forward and volunteered that she would have to nominate someone. I am guessing she picked me because lately the mention of the word Autism and I can not shut up! Its like a chemical reaction in my brain, all the researching and studying of it just oozes out of me and after waffling on for about ten minutes realise that the person who asked me how Diddles was getting on was in fact only being polite! I agreed to say a few words not realising that the Mayor of the town and local priest and parents and teachers of the infant classes would be there also. I had myself all convinced that I would be fine, not a bother. However when the morning came as most parents know the morning you really want things to go to plan they absolutely NEVER do!

The Boys woke up at about 8am as both of them had been awake several times the night before, one of them teething and the other asking for rice crispies and thomas the tank engine (as you do at 4 in the morning). I had their clothes ready to go, I just had to get them dressed and fed and in the car to be at the school for 9:30. Simple yes?? ha one would assume but one would be wrong! I try to keep to a routine with the boys in the mornings but after a long night they are not always willing to co-operate (nor am I if I'm honest, just 5 more minutes please. I wish!!)

Incident number one was chasing Diddles around the landing with a tooth brush while I was singing "Old mac Donald had a farm" to Madman who was waiting impatiently in his cot.
Incident number two was dressing Diddles. He was quite calm and collective which I thought was great until I went to change Madmans nappy, I turned around to see Diddles leaping around the landing in his nip with his uniform in a pile on the floor!!  
Incident number three was getting breakfast for the two of them and Diddles asked for his usual "Juice please". I gave him his juice and he proceded to pour it all down his uniform! Madman thought this was hilarious and knocked his wheatabix to the floor while I was cleaning it up.

At this point I was just ready to get in the car and leave before they did anything else. I drank a cup of coffee like a shot, found Diddles spare uniform, dressed him then chased him with the hairbrush and got him into the car. Then wrestled Madman into his car seat. These are the mornings I miss working in the office!!
It is a 15-30 minute (in traffic) journey to the school and in that time Diddles managed to unbuckle his seat belt 5 times which led me to stop the car 5 times which in turn made us late for the open day.

By the time I got to the school I had developed a twitch! His teacher came rushing out to me to give me a hand with the buggy, I had a feeling she was trying to judge whether I was going to speak or not and right up until the moment she asked me I had intended to do it but I could feel the flash of nerves over me and I knew there was no way in hell I would manage to speak infront of a crowd with out bursting into tears or fainting or something. It worked out ok she said a few words for me. I managed to cut the ribbon! I'm surprised I remembered how to work a scissors! Only photo of that moment is of me with my back to the camera haha typical! Oh well if you can't laugh about it you'll cry as they say!

If you want anything done around here DO IT YOURSELF!

Shock Shock Horror Horror !! We are still on a waiting list for services! I have gotten to the point that I really want to get qualified in speech therapy or occupational therapy and have the skills myself rather than wait around for the bloody health service team to get back to me. I think the child will be 8 before they get around to showing him his alphabet. So I have decided to put all the energy I have been using due to anger and frustration into getting a little more proactive. I have been spending my spare time watching OT videos on youtube trying to get myself offay with various games to play with Diddles in order to get him talking and playing and socialising. So far SO GOOD!!!

As part of the course the first task we have been given is to play people games (chasing,tickles, bubbles etc.) to provoke talking. Now since Diddles had his first speech therapy session back in 2009 we have been using bubbles, in fact this is how we opened that little window in his mind to get him labelling things and making eye contact and getting his attention. Diddles is now at the stage that he is bored out of his Barney by bubbles! I might as well be reading the dishwasher instruction manual for all he cares. Which means I have had to look for something a tad more fun and attention grabbing.

This in turn has led to the BALLOON GAME!
Its working great, god knows how long it will last but at this moment he thinks this is hilarious.
I have discovered that you really have to be comfortable with making a right eejit out of yourself in order for these games to be successful, anyone who knows me well enough will know that this really is not a problem!!
How it works is, you make sure there are absolutely no distractions. No radio or TV in the background, nobody on a phone and for everyones sanity no one is permitted to hoover! Then become as animated as a Tweenie!
I basically call Diddles by name once to get his attention. Say "oh look a balloon" Blow it up a small amount and say "Bigger?" Blow it up more and say "Bigger again?" and then say "ready, steady, GO!" and let it whizz around the room. When I first did this Diddles looked at me like I was a complete Lunatic and went about his business. The second time he watched me from a distance. The third time he had realised it was safe and fun so I blew up the balloon and paused. I took out all the language I had used so he had only one option to continue the game. He had to initiate the communication. I blew it up half way and paused, he pushed the balloon closer to my mouth signalling to blow, I held out a few seconds longer and he said "bigger mammy" and with that I almost fell off the chair with shock and the balloon went whizzing around the room. He picked the balloon up and handed it to me. I said what do I do? (Still in tweenie mode) .. put it on my.... NOSE?? with that he was in giggle mode but he managed to say "no nose mammy, BLOW".

He kept eye contact the whole time and was wanting to play with me. Without out a doubt one of THE best feelings in the world! Something so simple as a balloon. We paid a speech and language therapist the guts of 2/3 thousand euro and never got that much from him. Who needs a speech therapist when you can get that much done yourself! Feck the waiting lists! Life is too short, you create your own opportunity and run with it! This I think is the start of a newer bigger window!

All I can think about...

It's crazy how things can change in a matter of weeks. I am no longer a working mother trying to juggle a job and a house and aiming for some sort of balance to go alongside sleepless nights and frantically driving the kids from one house to another!
After a huge amount of consideration and tears (on my part) the other half and myself decided it was about time I finish up work to become a Domestic engineer aka domicile administrator aka desperate housewife, however you would like to put it!!
We had applied for domiciliary care allowance and carers benefit and we were due an answer on this the week we were on holidays. So we decided I finish work the same week as Diddles started in his new school.
That very night before he started we received the refusal letters for Dom care and carers benefit. I had heard from other people who had applied that there was a 75% decline rate on first applications. I had an idea that this would happen however I had a tiny thought in the back of my mind that we could get it first time around! Never will I be so naive again!
This in turn means no carers benefit and I had already finished work so it was a bit like taking a bullet! The reason for refusing him was that the medical assessor did not see how he needed extra care above and beyond that of a typical child of the same age. That was the single most frustrating thing I have ever been told! I genuinely think the medical assessors do not read the applications. They go from a pile of new first applications and straight into a pile of refused applications.

Anywho got an appeal together within 2 days after receiving the letters and I sent a total of 30 pages+

of documents back to them to prove he needs care and attention constantly. I got a letter from our GP, the principal of his ASD specific preschool, a letter from the public health nurse , all our correspondence with the hospitals and early intervention team. I also wrote a day to day account of what extra care he requires from our perspective.

All in all it's just as well I gave up work as none of this running around would have been possible if I was still doing 8 hours a day in an office!

All this work for € 300 a month

!! What a joke !

Anyway Diddles absolutely lit up when I first put his uniform on him! He absolutely loves going into school! There are 5 other children in his class and two SNAs and his teacher. He gets the attention he needs which is all we have wanted for him. He still however is not receiving any services or therapies he is on waiting lists for all. I'll keep fighting until we get it for him!
I am starting a course in a few weeks to learn about speech therapy I got free tuition as the girl running the course needs the numbers and it'll be me helping her out ! What a nice break! I'll probably qualify quicker as a speech therapist than when Diddles is at the top of the waiting list! So hopefully things are on the up for us. Can not wait for the waiting lists and welfare to not be All I can think about!