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!

AAH FINALLY!! some PROGRESS AROUND HERE!!

Well Since my last post in March a lot has happened, Diddles finally got his assessment of need done and dusted.
It was very bitter sweet because although you never want to hear your child has a disability your finally getting on the right road for the help that he needs!!  While the assessment sessions were happening you kind of go into robot mode! Its like your answering questions in the exam of your life, similar to the type of nervousness you experience with the leaving cert except you know all the answers. Its just how you answer them and how the examiner is interpreting your explanation. Every single detail of your childs life is laid bare for a complete stranger to decide which type of care he needs for his future. Very strange..... you wonder how this person is qualified and have they ever known the life that your son leads, but sure how could they?? unless they themselves were disabled in the way he is or have cared for someone on a full time basis day in day out. Not judging someone for an hour at a time once a week for several weeks. The whole process is quite aggravating really.
In order to get your head around this ridiculousness you need to numb yourself to all these little details and look at the bigger picture.
So he met with the psychologist, the speech and language therapist and the occupational therapist. They called out to his play-school and gathered their information needed to come to a joint conclusion. The conclusion and outcome that I myself had expected to hear since Diddles turned three. We conclude that your son has Autism. Now you see this in writing and most mothers would be devastated or emotional wrecks to acknowledge such a thing. However I had dealt with this a long time ago and my Husband had dealt with this so when we received this news we were Relieved, to the point were I could have slapped the assessors and said DUH!! Now point me in the direction of a school and some answers, and for the love of god do not utter the words "waiting list" to me!
The next big hurdle is getting entitlements for him, I am currently in the process of applying for a career break so I can take Luke to and from his new ASD pre-school in Kildare. I was told to apply for carers allowance I would have to wait for 16 weeks to process the application, before I do that I have to be approved for Domiciliary Care Allowance or I point blank do not qualify. It almost feels like I'm on trial to be able to give up work to look after my own Son, who at this point in his life really, desperately needs early intervention and I'm between a rock and a hard place due to a queue in the disability departments at the welfare office. Surely this department should be priority when it comes to children and adults with life long and severe disabilities whether it is a mental or physical disability!  Why not all the unemployed people do something for their dole money and go into these government offices to help with the back log of applications and help dig this country out of  the giant hole it has dug for itself. Instead of all these petty TD's and Ministers pointing the finger and passing the blame like a hot potato.Stop the complaining and get off your backsides and do something. Ill do it, for nothing! I personally volunteer to go into the offices and help clear the back log of applications, if it means children like Diddles are given the opportunity that other children should have!!
Basic human rights clothing, food and an education but only if they are willing to wait while our government cut back slightly on all things necessary!  Sure special needs assisstants in schools are not essential, all teachers should be able to take on an extra 12 students on top of their usual 20 and manage to help the special needs kids with toileting and opening their lunch boxes while the rest of the kids swing out of the black board to receive some sort of attention. While the SNA's are sent to the welfare office until the economy picks up. I tell you no wonder depression rates are rising and crime is escalating this is all linked, a viscous cycle until the universe implodes.

Aside from the S.T.R.E.S.S of all that Myself and seven of my ladies completed the womens mini marathon this June. Great experience got absolutely drenched but it was worth it. Just to cross the finish line and raise some money for a very worthy cause Irish Autism Action. Good sense of acheivement about the whole thing. Will definitely do it again next year, might even jog it next time!Ha we'll see ('',)

Also Diddles graduation from his play-school last week check him out so cute!!
First graduation of many!!!!!!

Also Madman turned One!! That year absolutely flew in, He is now babbling away and walking everywhere, a real little munchkin man, the boys get on brilliantly, Diddles is very protective of Madman, he is amazed by his walking and talking, they are bringing each other on more than I ever thought possible!!

Frustrating times!

Windows Live Hotmail: "Assessement of need‏
From: Zarah Doyle (zarahdoyle@live.ie)
Sent:09 March 2010 21:21:01
To: info@maryharney.ie; emmet.stagg@oireachtas.ie; minister's_office@health.irlgov.ie

To whom it may concern

Please can you help me, My son has been to see the pediatrician & Early intervention team at **** hospital they have told me he is on the autism spectrum. In order to be seen by **** hospital we had to wait since a referral by our GP in May 2009 until February 8th of this year. The only way they can diagnose him officially is by a clynical psychologists report. I have now been advised we have to wait for a further six months. He turned four 11th January. He should have been starting school in September and now I'm afraid my hands are tied for school applications as I do not possess a clynical psychologists' report. I have been to see the local mainstream schools principal and he believes that because my son is not a threat to his peers, he will not be permitted a special needs assisstant for the classroom, due to cut backs. My son does not have the fine motor skills to open his lunch box without assisstance!

I applied for the assessment of need last august through *********** hospital, in November 2009 we moved to Co.Kildare and we were told by our Public Health Nurse we would have to reapply to Kildare to go at the bottom of their waiting list. Legally we were told we should have been seen within 3 months.
However we were four months on waiting list in Dublin and now on list in Kildare to be told it will be another 6 months plus before we get anywhere!

Everyone I have spoken to has told me early intervention is key and yet time is flying by us while on a waiting list!!


I am positive we are not the only family in this situation but this is such a ridiculous set back. He requires constant attention and we can not apply for any entitlements without a diagnosis. My Husband and I both work full time, we have a nine month old baby and we need some sort of assisstance on this.

The cost of a private assessment in this country in unaffordable to say the least. Speech therapy is at a crippling cost.

It is my sons right as a person with autism to an accessible, unbiased and accurate clinical diagnosis and assessment.
Could someone please help me on this! all I am asking is for what he is entitled to, Education and health services!!





Regards
Z Doyle