Autism never sleeps!

Well not in this house anyway! Let me set the scene for you.....
You are walking around downstairs packing lunches for the morning, sterilizing baby bottles, making sure there are no valuable toys or essential remote controls left within the dogs reach for a midnight snack, switching off lights when this is all done you can start locking up and set the house alarm. You drag your exhausted little be-hind up the stairs, check on all your little darlings sleeping soundly in their warm cosy beds. Reluctantly brush your teeth and collapse into your lovely soft comfy bed. You let out a giant sigh of relief, You lie there for a few stolen moments thinking this is heaven. Listen to that ........ aaaaaaaaaaah silence. You begin to drift off to a land with no nappies, whining or even the sound of your own voice. .....Until you hear it. That dreaded sound. The sound that can only mean one thing. You're sooo not sleeping any time soon!
Autism is awake!  It is the tiniest little giggle to start off with. Then it turns into full blown self talk conversations, scripting their entire day start to finish, including any TV programmes he may have watched or apps he may have used on his ipad that day. (My son is "non-verbal" .... not at night time!!) Then when he is fully awake still chatting to himself he wanders into your bedroom . You try to take him by the hand and bring him back to his bed and he stays there ..... for about 30 seconds! And before you know it his 3 year old brother is awake and they are both hi-jacking your bed. This is not a new thing for us, I mean Diddles is 6 now and I honestly can not remember if he has ever slept well. Infancy maybe but then I had nothing to compare his sleep patterns to, he was our first so everything seemed exhausting. I remember a few years ago complaining one day in work about being exhausted and some one suggested the super nanny bed time routine, we tried that and needless to say but it was an "Epic Fail". This was before I had heard the word Autism and my sons name spoken in the same sentence. So many Children with autism find pleasure in repetitive behavior so therefore me taking him by the hand and bringing him back to his bed 50 times a night had him laughing his little head off. He found this hilarious. This was not good for his poor parents working a full day after maybe 2 hours broken sleep. Things had to change! I knew deep down that I was doing everything I possibly could to relax him and it simply was not working, I felt like I was going insane with the lack of sleep. Then it became all I could think about. I was getting throat infection after throat infection from being so run down, I was an emotional wreck what the hell was I doing so wrong?!
When "D" day came along and we got the diagnosis of Autism it was a really sad day but it also confirmed that this was not my fault this was a neurological disorder and when I heard insomnia was a common trait I was so relieved we had an explanation... well sort of seen as there is no known cause or cure for Autism but anyway. We began to tackle his sleep issues.
First of all we introduced a visual schedule of his bedtime routine.
Secondly, Then we began to look at under lying issues, we learned that his diet had a major impact on his sleeping schedule. He had an intolerance to Dairy and gluten, we found this out after we had him tested by a local Microbiologist as he suffered from a sudden on set of terrible diarrhea. Known as a leaky gut, his immune system could not absorb the nutrients and vitamins he was consuming. He was constantly sick, ear infections, colds, vomiting bugs he caught everything going and it did not matter that I had been giving him a balanced diet and vitamin C etc, because nothing was going in. We did a detox of dairy first and then a week or two later gluten. It is quite difficult to get you're head around the diet at first but it does become second nature after a while.
We found that his health improved a huge amount, rarely now would he get sick maybe once or twice a year, I think this has been down to the change in diet and the introduction of supplements also. We use Calcium, magnesium and zinc, a pro-biotic and an iron supplement. The Gp just prescribes antibiotics left right and center and you are never told if this will affect your childrens health in the long run so if you have to give one give a pro-biotic also! After we followed through on these things his language started coming and he lost that far away look in his eyes and started making eye contact. You could see how much happier in himself he had become and his personality began to shine threw. Autism will always be in our home but there are things you can do to help some of the symptoms.

Thirdly, His insomnia is still an issue he just can not switch off and he is afraid of being alone so recently we went down the road of getting a prescription of melatonin for him. This works well with the initial send off to sleep but again it does not keep him asleep. Maybe two nights of the week he will wake during the night now but at least we are all getting some sleep!!!
We are bringing him again to have food intolerence testing done to see if there is something else like a food allergy/ intollerence that is keeping him awake, we are also getting him assessed for ADHD so will find out soon. I really believe food and routine are the answers but I am still working on them! Wish me luck !! :)




(*Images courtesy of google)

The Massacre of Curious George!!

This is Diddles 6th Birthday cake which was made from scratch by his Nanna. It was a gluten and dairy free Curious George cake. Her blood sweat and tears went into making this for him before it met its untimely demise. You see young Diddles hates hearing people singing "Happy Birthday", especially to him! 
 Not only is he hearing peoples awful off key singing but he is forced into a social interaction that he simply can not process. When he first walked into the room and set eyes on the cake and everyone standing around it he immediately bolted out and went to hide under the stairs, hands over ears and verbal stimming.
After a lot of coaxing with the promise of chocolate cake he returned to the scene in the kitchen. He made a beeline for it and pulled Curious Georges head clean off!! He then proceeded to demolish the remains of the body until all that was left was mulchy crumbled icing. Everyone of us stood in the room unable to move, rooted to the spot in disbelief, I personally wanted the ground to open up and swallow me. My poor Mam all her hard work. He felt that strongly about his hatred of hearing happy birthday being sung to him. Not that we would have sang it anyway knowing how he feels we thought he would have been delighted to see a Curious George chocolate cake all for him. How wrong were we ! .....

"If evolution really works how come mothers only have two hands?" milton Berle

So it has been one hectic year and it is about time I updated this blog before I lose track of all our progress we've made this year! We have two new additions to our family since my last post in May. First to arrive was our gorgeous Golden Retriever puppy Toby, and second to enter our lives is my beautiful baby girl who we are absolutely besotted with beyond all expectation, I mean I knew I would be in love with her from the moment I felt her first kicks in my belly but my god baby love on a whole other level. I guess because she was such an amazing surprise for us this year. First of all total surprise of being pregnant again and secondly I was so convinced I was having another boy. The anomaly scan at 22 weeks didn't convince me in the slightest despite the doctor telling me she was a girl, I was terrified that I'd get my hopes up for the splash of pink through out my house. I adore my boys and a baby girl just completes the brood, it really feels like we have achieved the perfect balance now. Feel very blessed right now by our little family!

This past summer had been relentless to put it mildly! Not to be dramatic or anything but I feel like I was physically and mentally pushed just within my limits. Looking back I don't think I would have taken on so much at the one time. I did not have a bad pregnancy however I did have a very emotional one. I think I may have cried myself a small river, at the time there was a new unwelcome killjoy tenant in my house "Captain Hormone" (as my Husband likes to call me on such occasions). It took a friend to actually point out all that I had going on was so stressful. After all, we had an attention seeking two year old, a very active 5 year old with autism who seemed to be awake 22 hours of the day and a new mischievous puppy with boundless energy and a very hormonal, sleep deprived pregnant mother stuck at home in groundhog day mode.
We decided one day before Diddles finished school that we would get a puppy. Diddles absolutely LOVES animals and we knew we would eventually get a dog. In fact we have had our names down on waiting lists for an assistance dog for over two years at this point. It was probably too impulsive and a decision based on cute pictures and hormones but I don't regret it because now we have our beautiful Toby. Who we are now training to be Diddles assistance dog thanks to a new Irish charity called My Canine Companion. I found it through an Autism Mommy friend on Facebook and it was the perfect timing considering we had such an instinctive decision to buy Toby. This picture was the first day he got his vest he was about 13 weeks old and we were able to start "Puppy walking" him. Which basically means we brought him everywhere, shops, cafes, restaurants, relatives homes etc. and let him become accustomed to all noises and smells. He has the ideal temperament, very friendly, loves the kids and quite easy to teach so for all these pro's I forgive him for being so hairy, making me hoover several times a day. We would be lost without him now, himself and the boys are great friends.
I have Diddles in the habit of giving him his first feed of the day before he goes to school. He is quite tuned into Toby in a weird way, he looks out for him, he wont let Toby chew on anything he shouldn't be, he initiates a game of chasing with him, Diddles worries about him if he runs too far during a free run. I really love that Diddles is involved in his training, it teaches him so much, Compassion, responsibility, he is more aware of his own safety and others around him as he is more focused! I am not trying to sell it, I am merely noting the differences Toby has made in Diddles life.

Our little Princess or as Madman called her baby five is now 4 months old and thriving, sleeps all night smiles most of the day by far the angel of the house at the moment however I am under no illusions that at some stage she will make up for it. Right now we are enjoying every "goo" and "gaa" out of her. She is certainly letting us know she has a voice! That's my girl make your voice heard among the madness. She gets that from her Mammy ('',)
How lucky is she to have two big bro's looking out for her! Madman did not bat an eyelid at the fact that he was not the baby of the house anymore. We were expecting curly headed green eyed monster to emerge, however pleasantly surprised that he really enjoys the big brother role. He loves to boss people about and therefore fits the role perfectly. Not a day goes by that I don't think Madman was meant for the stage, never fails to make you laugh especially in the most serious situations you just can not give out to him without fighting a smile! Butter wouldn't melt as they say. This kid is going places mark my words!


 As stressful as I found it last summer the outcome was so worth it because my son (aside from his siblings) made his first friend and also my baby girl made it here safe and sound. I am a firm believer in the saying "you have to work hard for anything worth having in this life".

Welcome to Autie town population ...YOU. What worked for us...

Trying new things with your little Autie can be really daunting, not only for the child but especially for us parents!
Every child is different so these things may not be everyone's cup of tea, however
This post is focused on new things we have tried with our 5 year old over the past few years in an attempt to get him talking and interacting, he was completely non-verbal until he was three and now he has a broad store of language to help him communicate, He is still not totally there conversationally but his understanding has come on so much in the last year especially. So here is a list of what worked for us so far....

Music - When Diddles was almost 3 he had no words other than "Mammy" and "Daddy" and very limited eye contact. I researched speech delay and I found some Nursery Rhyme tracks on itunes and every opportunity I got I would put on that music. The rhyme's were catchy silly songs with ABC's etc. I would especially play these in the car were he was confined to his car seat. His reaction to the music at first was hands over the ears and humming to block the sounds out and I was tempted to stop playing it for fear it was hurting him (this was pre-diagnosis of ASD). Then one day he was playing with his cars and I heard him humming and then singing some of the words, not very clear but this was amazing to us. He then started to sing when he wanted to hear the music again, I went with my gut and started dancing around to the music like some silly lunatic woman with him. He thought this was hilarious, it brought on eye contact and interaction like never before with him. It proved to me he could listen and pay attention to things that sparked an interest in him. And what child doesn't like acting ridiculous sometimes?


Animals - We discovered when he came into contact with animals he became calm and focused. They had a really soothing and calming affect on him. They still do to this day. We are on the waiting lists for an autism assistance dog although we still have a bit of a wait left before we get one.                                                                                                                                            For his fifth birthday we started him off horse riding. This has been a major breakthrough with him. Like everything at first he was terrified but that was because it was so new. I find persistence with Diddles is all he needs, that extra push and he becomes fearless and willing and more confident. Now it is one of his favourite things to do. He has the same pony every time so there are no surprises for him when he arrives. He stays on the pony for the full lesson and leads him back to the stables and brushes him down when finished. He is engrossed in this absolutely loves every minute of it.

Visually strong Diddles is very strong visually, he registers the tiniest of details and we discovered this when he would point out things to us that we would not usually notice, for example a bird in the far distance of a photograph or a car with different color reg plates etc. We had to figure out how to harness this. We began with flash cards bright, colorful and basic. In the beginning to get his interest we had to bring his finger over to point at the image on the card and he would begin to say the word. Now I can show him text for some words and he can read it. It has taken A LOT of repetition but it has worked.
                                                I can not possibly do this post without mentioning the fantabulous ipod touch! To begin with apps like ABA flash cards and ilearn2talk and itouch ilearn  , countless YouTube videos of the educational and of course entertaining kinds (Thomas the tank engine in Japanese or Maters tall tales en espanol!), Touch pet dogs is one of his favourites as well as Stick figure games and feed me app. The only thing I will say as a warning is it can become an obsession so I try to limit the time he has it. I try to use it as a reward mostly, but he has been known to sneak it past me!
Also to briefly mention some websites to help with starting out on making visual aids/ pecs etc. There are lots of websites out there I found these to be great when starting out!

• http://www.setbc.org/pictureset/
• http://www.sparklebox.co.uk/ireland/
• http://www.visualaidsforlearning.com/
• Google images - for anything you can not find in pictures sets google will have it!

Social stories a brilliant discovery I made is Story builder software its free to download and you can add your own images and it gives sample story to help start you off.

People games When I completed the Hanen programme More than words, we discovered people games! These were brilliant for drawing him out. A lot of acting the gobsheen on my part but worth it to hear the results.


#1 The blanket swing. Lots of repetition and the aim being he started the game and used more language and understanding and taking turns.

#2 Chasing - Aim was taking turns again and initiating the start and finish of the game. Keeping it interesting with tickles and funny faces really helps.

#3 Toy racing - wind up toys having a race, understanding the rules and being patient were the aims here!

#4 Balloon game - blowing up the balloon, letting it whizz around the room or screeching it (some sensitive ears might not allow and others find it hilarious). Getting the speech going and initiating the game.

eg. Big bubble, small bubble, wet bubble etc.

#6 Videos - We discovered one day that if Diddles was totally engrossed in the TV or video that if you intervene and pause it or rewind programme it in itself is enough motivation to get some new language out of him.
"I want to play it again" or "press play please".

#7 Making Jelly/ Rice crispy cakes

#8 Making a home- made obstacle course - using toys, chairs etc.

Sensory play

• Play Dough is a favorite. 
• Water - cups in the kitchen sink/ kids pool (if the sun ever comes back to Ireland) 
• Sand pit - He loves the texture, Salt in a lunch box does the same thing.
• Resistance straws - have race blowing pieces of cotton wool.
• Trampoline/bouncy castle/bouncing on a therapy ball/gym ball

Anyway my whole point in publishing this post is in the hope that it might help anyone starting out on the Autism voyage. Its not easy to get your head around everything in the beginning, it's overwhelming and sometimes we need a little inspiration! Especially when it drains so much of your energy waiting for services. This is all DIY ideas that worked for us.


(Images courtesy of google images, videos courtesy of YouTube)

Autie Boot camp toilet training

Well it has been over two months since my last confession post and this is down to a huge surprise our little family had in February. It has taken this long to come around to the idea and I am finally able to write about it. Due to tiredness and constant nausea I have not been able to read any blogs or emails or even open a laptop, the most I have been online is briefly on my phone. By now I am sure you have guessed it. Yes I am pregnant.....again. I have to admit it took a while to get over the shock of it! Now that I have, I am really looking forward to a new baby in the house.

Which also means I have sooo much to do before the new arrival which is due in October by the way. My list seems to be getting longer by the day. Toilet training Diddles was No.1. I had been waiting for the nausea to subside before embarking upon the potty training boot camp I had planned for the Easter break. To have to change three sets of nappies in October is an unbearable thought.

Someone up there must have been looking out for me because the Friday that Diddles finished school for his Easter break I got a call from his teacher letting me know she thought he was ready to say goodbye to pull-ups. Luckily enough my morning sickness had subsided that very week and I had a little more energy to give it a good shot.
Needless to say I have spent the past week and a half walking around with dettol and a mop permanently attached to my arms and asking 5 gazillion times a day " Do you need to go toilet?". I had plenty of reinforcements for him at the ready, Ipod  touch (First toilet, then Ipod was the deal), favourite books, DVD cases (he loves to examine). Diddles has a lot of sensory processing issues so I had also started him on his sensory diet as part of his occupational therapy which consists of Therapy brushing, joint compressions and the therapy ball etc etc. I found once he was regulated, calmer and not pacing back and forth or jumping all day he can concentrate for a lot longer. I have to say after four days of almost pulling my hair out he got the gist. At first I set the stopwatch on my phone to every 30 minutes, I brought him EVERY 30 minutes from the time he woke up until he was going to bed for the first 2/3 days whether he need to go or not. He worked it into his daily routine. There has been no sight nor sound of a pull-up near him, even at night. No accidents at night so far. He is going all by his very self now.

 There have been one or two accidents during the day but nothing too disheartening. I had people always saying to use reward charts and stickers and cheerios in the toilet to sink etc. All great ideas but they don't work for everyone, Diddles could not have cared less about getting a sticker on a chart, I think if you go with your gut instinct you are more likely to have success.  It is such a relief, I can not tell you how many times I have tried this over the past 3 years and failed miserably, The only things different this time are he is older and the OT sessions have helped so much with his concentration and I suppose the fact that I understand Autism much more than I did before. I never thought I would be so happy to have my 5 year old toilet trained!!

That's Diddles 1 Autism 0.

More than words!

I found the most difficult part of discovering your child is on the Autism spectrum is realising you have to almost rewire your brain to understand the situation. Every thing you assumed came naturally to a child all of a sudden has to be taught to them (a lot of the time in pictures).
How to learn to play, feed themselves, toileting, speak. "Typical" kids seem to pick it up from listening and watching their parents and siblings, but kids on the spectrum need that extra help to understand the simplest of daily routines. Last May when we received the official diagnosis of Autism for Diddles, Myself and the Hubby had no idea where to start. There are no handbooks given to you, no point in the right direction where to turn to for advice or help. You are handed this report and given a list of schools and told your on a 10 month waiting list for therapy after you write a letter of referral yourself. I don't think this is good enough. All I'll say is thank god for the Internet!

After receiving our Assessment of need report I remember heading straight home, turned on my laptop. I had an email from a speech therapist I had spoken to a few months before. She had been trying to run a Parent course called More than words but she could not get the numbers she needed to go ahead with it then. The email stated that she was going to run the course later that year and also asking was I still interested in attending. When I say this was meant to be it is an under-statement!
Without a second thought, I went and did the course, we had absolutely no services and could not afford private speech or occupational therapy (@ €90 - €120 p/h). I didn't really know what to expect from it.
It turned out to be exactly what I had been looking for. I swear someone up there is looking out for us.

Diddles was four when I started the course and he had not had any therapy or services because it took us so long to get the assessment of need done.
More than words taught me how to play with him again, and that my friends is priceless!
It taught me all about his sensory needs and how these effect everything he does. Which before I knew some "habits" he had were sensory but this opened my eyes to just how much he is effected by autism.
It taught me how to teach him to use language, to slow everything down and to really listen to his attempts to communicate with us. I learned all about his echolalia, scripting and all about visual routines.
The difference in him and ME and his Dad AND brother and Nanna, we all understand each other a lot better. Every parent to a child with autism (obviously depending where they are on the spectrum) between the ages of 3 and 7 should have to do this in my opinion. Its DIY therapy, you already have most of the tools and you don't even realise it.
When I started the course Diddles had no more than a 30 second attention span, he was constantly running around and jumping and singing. Now I know why he does it. From working on him with all the visuals and people games and helping him understand. We discovered he is actually really interested in books. (Before he flicked through the argos catalogue)He did not know how to look at a book and He is now interested in a story at bedtime, he'll happily lie in bed and look at the pictures and talk about it. As opposed to hop in and out of bed 20 times and sing over you while you're trying to read to him.

All I know is this really worked, a few steps in the right direction. I wrote this for the parents who are just starting out and may feel a little helpless in the beginning just like I did. It does not solve everything but it gives you a great insight into their world and I would definitely recommend doing the More than words Hanen program.

Ah HUGE Thank you to Catts Ireland for everything! Can not thank you enough.

Us parents have super powers ya know!

I have been conjuring up a survival list for us Parents of overly active little darlings. There are a few super powers we have that are essential to survive in Autieland.

#1.  Unlimited energy supply

#2.  The ability to survive a day on an hours sleep. (Thank heavens for caffeine!)

#3.  Psychic ability to understand the non-verbal. 

#4.  Excellent gut instinct - especially in the case of illnesses and causes of meltdowns.

#5.  The ability to think and run at the speed of light - for chasing after your little flash gordon when they dart off in public!

#6.  That fire in your belly that makes you fight for their entitlements, be it for their Education, Therapy, Assessments, Medical help, etc. Take no bull!

#7.  Accepting that not everybody understands the concepts of Autism, some just don't get it!

#8.  Keeping an open mind - ANYTHING is possible, there is more than one way to live in this world!

#9.  Remembering that those who mind DON'T matter and those who matter don't mind! You learn very quickly who your true friends are.

#10.  Knowing that its perfectly ok to have your own meltdowns sometimes!

so there you have it and there is probably a million more where they came from.

You are super and don't you forget it ! x