Embrace the crazy!

There comes a time when you eventually just accept the inevitable. Everyone has a family dynamic that is different to the next family, granted some a smidge more coocoo than others but what fun would it be if everyone had a "Stepford" family?!
Pre-marriage and babies the mental image of how you expect your family to be is usually along the lines of a walk in the park on a sunny day child up on Daddy's shoulders while eating ice cream and all children smiling and behaving nicely, or checking on your little darlings at night and they are sleeping soundly with a little night light beside their bed after you reading a story or even better they read to themselves (which may happen once in a blue moon by the way). Never do you imagine that actually your child will DETEST the park as there are far too many people and over stimulating things there and he is lactose intolerant, nowhere in Ireland will you find that dairy free ice cream is readily available at a park. Because of this your little darling is very upset and not such good behavior ensues. Never do you picture your child not having the ability to go to sleep naturally and having to be dosed with a Melatonin supplement most nights and having to follow a strict routine for bedtime that if you miss a step world war three breaks out in their bedroom. If you are consistent things will improve eventually but it takes a while to get your own head around the whole routine.
Having a child with an Autism Spectrum Disorder can affect every aspect of family life and the majority of people have a very brief understanding of autism. There are so many highs and lows for everyone in the family. To be honest unless a person is living with an ASD in their immediate family, I don't believe they can ever understand it enough. For younger children on the spectrum their siblings can be terrified of those eardrum shattering episodes at bath time or meal times. For example putting the wrong episode on of "Looney Toons" or "Tom and Jerry" (flavour of the month right now) can cause absolute uproar or attempting to put school coat and hat on before the school bus arrives, will only sleep with a particular pillow case. Everything is so specific you really need to pay attention to the little things. This is why I can only get certain people to babysit otherwise the poor person babysitting may be found rocking back and forth in a corner by the time we return all because the did not use the right cup for his orange juice.

 *One tip for meltdowns people, just let them happen! Do not try to comfort the child with autism with hugs and telling them its O.K, unless they come to you for a hug, that is on their terms. Sit beside them, let them know you are there but do not intervene unless for safety reasons obviously! They have their own coping mechanisms. Leave the room if you can't cope you will only make it worse for them! Click here for an insight into how a meltdown feels for someone with an ASD.

It is funny how in sync my boys are together. Eldest has an ASD and the youngest boy is your typical three year old. He knows no different than to accept the tantrums and can tell me the antecedent sometimes before I have realised what set his brother off! Yes he is three and wise beyond his years. I believe because he has an older brother on the spectrum he is more compassionate and understanding and really wants his brother to succeed. He looks up to his older bro. He sits in to listen every time his brother is doing flash cards and reading homework and this has meant his vocabulary is quite advanced for his age and he is well able to communicate his needs to anyone who will listen. He can also act as a spokesperson for his brother which is kind of amusing right now because he is half his size! I have one child who is painfully shy and another who steals the whole show which obviously leads to a very interesting dynamic and a never a dull moment type of atmosphere in our house.

Both boys are equally brilliant in different kinds of intelligence. Eldest (ASD) fan-friggin-tastic problem solver, reading, numbers, surprisingly high emotional intelligence (not exactly a trait of a person with  ASD) such a great sense of humour too, an introvert prefers to be alone or with a small well known group of people, enjoys his brother or anyone but him in the limelight. Youngest (NT) is everyone's  friend and everyone wants to be his friend so sociable craves social interaction, very bright re letters, numbers, able to adapt to most situations, stick up for himself and his brother and sister, an extrovert. He embraces the crazy, he does not brand his brothers behaviour as bold, he accepts him even though he drives him do-lally sometimes but who's brother does not do that?! I just wanted to share how proud I am of them and they cope better then us parents do some days. How lucky is their baby sister to have these two to look out for her?! 

Just keep swimming

So, I have written before about Diddles interest in swimming from an early age. He is a water baby yet he has not moved on from the arm bands stage. Mostly because his attention span was so short and it was just something he enjoyed doing alone (like most things really). Now that he is a little more verbal and his receptive speech has improved we have decided to take the plunge and get him one to one swimming lessons. It is so difficult to find one particular activity that he truly enjoys without anxiety creeping into his head and ruining his good time! So for the moment it's swimming and we are going to attempt to keep his interest in it and harness this natural ability he has. I watched him tonight at his first lesson. He got into the pool without anyone giving him any direction. He paddled in his floatie suit from the deep end to the shallow end paying absolutely no attention to the instructor for the first ten minutes or so. Then every so often there was a little glance in her direction. He was warming to her. She brought out some toys the first of which was a ball she threw into the water. Diddles insisted "NO BALL!" She then suggested these funky little water weights and he refused them too. She began to play along side Diddles, parallel play if you like and sure enough when he realised what the purpose of this thing was he was straight over interacting with her, lots of eye contact and giggles and answering her questions with one or two word answers. Then after 20 minutes he was actually commenting without any prompting "oh that's a big splash in the water". Em ... eight words in a sentence is just so much of an achievement for him. He has oodles of ability but unless he warms to you, you are just never going to see it! Diddles is six and a half now and his speech is finally coming, social interaction is his most challenging obstacle and it's finally really clear to us that he does want to over come it he just needs people to give him a little time! So until people can realise that he'll just keep swimming!

Diddles & Tobias

I really I have to stop leaving it so long between blog posts!!

Life is going pretty well lately for Diddles. He is coming along great with school. He is starting to read which is just the most amazing sound to hear. His sleeping habits have improved a HUGE amount since being put on melatonin. There are still some nights this does not help in the slightest but thank god they are few and far between. He is sleeping! For the first time in his life he is getting a good night sleep, which means he is less anxious and has a longer attention span. Also we have finally got our gorgeous assistance dog Toby home from his training in Cork, he has been gone for almost five months which in kid/dog years is like ... well.. forever. They had their first attachment walk just yesterday and it went absolutely brilliantly! It is such a relief because we just did not know what to expect. Diddles reactions to situations are very unpredictable, but in this case he was so comfortable with his dog. We've had Toby since he was eight fluffy weeks old and watched him grow from a clumsy puppy into a hunk of an adult Golden retriever, he is so gentle with the kids! We puppy walked him ourselves and to see him come through his official training with My Canine Companion  is just so rewarding. He's not just an assistance dog to us he's our Toby.

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)

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

Life.Is.Loud!

My little angel is 5 this week and I could not be more proud of him.
He has opened my mind to so much since he came into this world.
I never pictured my baby's ability to teach me before I became a mother.
I hurled myself into the role of Motherhood without thinking really and now that I am here, I actually feel very humble to be his parent. I could spend my days wallowing in the fact that Autism can run our house from time to time each day but what would be the point in that? I have decided that I am going to give it my best shot.I figure he is my blank canvas and I have to pay attention to every detail to help him express himself.

I wish everyday that others could understand him the way I do. He is funny, caring, playful, clever and very happy. However other people only see the Autism that clouds his brilliant personality underneath it all.

Since everyone has heard he has been diagnosed with Autism, people tend to speak to him like he has hearing problems. Why is it so hard to understand that if someone is not looking into your eyes or responding to you immediately that they are not deaf?! They do not need you to speak slowly or enunciate every syllable, maybe there is so much going on in the room that they can not focus on a human voice. They are hearing the hum of the fridge or the lights are too bright or there is a dog barking, the TV is on or a phone ringing. If you really allow yourself to think of how life feels for them, Life is Loud! That said that does not mean you have to avoid talking to them all together, it is not that they do not want to talk to you, it is that they don't have the communication skills or social skills to initiate a chat with you.

 He has moments of clarity that absolutely amaze me, I have learned to appreciate every word, every glance, every kiss, every hug. It is a huge effort on our part as parents to help them be the best that they can be. I could not count the amount of times a day that I would think of how to make things easier for him, taking notes of things I should have a visual aid made for or a game that could help him comprehend how to share with his brother or how to make dressing himself easier and fun. It is all worth it when you get one of those moments of clarity, it can happen anytime.
We were practising his dressing routine one night before bed and he said to me "Mammy I want to dance, let's go!", That sentence was his first of that length and it was just so amazing to hear. I mean you really work on them and will them to speak and live for that first real conversation. The last few months he has had some emerging spontaneous speech and it really does leave you thirsty for more. Those moments are addictive, it is like a drug, you are getting your fix of happiness. There is real meaning in his words, it is not an echo from his favourite TV programme, or singing over you when you speak, it is real talking and eye contact. These days give you the strength to push through the bad days. We were sitting in the car park in a local retail outlet and he was staring out the window when all of a sudden he started to spell the names of the shops. "H E A T O N S" " H A R R Y  C O R R Y", now he didn't pronounce the words but he got each letter right. I swear these are the moments you wish there was a psychologist in the car so you can say see I told you he can do it. He has never done this in front of any of the early intervention team or teachers etc. Probably because the places you go to get these assessments carried out are so unfamiliar and the kids spend their time getting used to their surroundings as opposed to actually showing their true potential. Diddles has come such a long way since he turned 4, In a year it is unbelievable. Now if I could just get the services to harness it we would be flying! Until then we'll keep working on him.

Happy Birthday Diddles "Lub you very this much" xxxxxxxx




(pics courtesy of google images)

Echoboy.....

One of the symptoms of Autism that I find fascinating and yet sometimes as a parent can grate on your last nerve is Echolalia.

For a child that is considered "Non-verbal" Diddles does an amazing amount of talking. For those of you who are not familiar with the concept of Echolalia there are two types. Immediate Echolalia (also known as parroting, repeating the exact words or sound directly after hearing it) and delayed Echolalia (repeating a word or sound an hour,a day, a week after hearing it). It is not just a symptom of Autism, it can also relate to tourette's syndrome etc. etc. Immediate Echo is for example me saying "Would you like Juice?" and his answer to me would be "Would you like Juice?".  Diddles does both Immediate and delayed, which is pretty common with kids with an ASD apparently. It is the delayed "Echo" that amazes me as he can repeat an entire script from a TV advert or TV show at perfect pitch and sometimes in the exact accent he hears. It can also remind you of a broken record at times as it is repeated SO often!

The first incident with it that sticks out in my mind was when Diddles was about 2 and he was sitting in the trolley while we were doing our weekly food shopping. We were half way through the supermarket and the queue's were long, people everywhere. All of a sudden we heard this little voice shouting "HELP!", we were looking around to see where it was coming from when we realised everyone was staring at us because it was Diddles. Bare in mind that he had never said more than "Mama" or "Dadda" before this. He was shouting HELP! as if he was being dragged away by 8 foot monsters. Barry and I looked at each other both flushed with big red faces, shrugged and laughed it off awkwardly. "Oh he's just playing he he," I remember sheepishly saying to fellow shoppers who were actually starting to look concerned. Yes we kidnapped this child and brought him .... you guessed it FOOD SHOPPING! I think not! We could not just abandon our shopping so we had to endure the "HEEEELP!" shouting even in the queue. We realised when we got home that he had been repeating a line out of the pixar movie Cars.

He also used to walk around in public echoing the advert for Subway in a very angry french accent, you might remember it. It went something like this .... "Whats the matter? Too Hot? Too Spicy?" "HOT! HOT!" Now can you imagine people walking by and Diddles (a 3 year old half pint with blonde curly hair) re-enacting a role played by a giant jalepeno pepper?? 

He has repeated entire episodes of Thomas the tank engine while playing with his trains. One time at the perfect moment he said "Well bust my buffers You're right James" to a man who asked him was he four years old. Then he turned on his heels and ran into the house. His timing is what makes you giggle!

His current favourite is saying "Bless you" at the weirdest most random moments. He picked it up from a kids TV show when all the characters sneeze and they say bless you. The great part is that if he uses the language enough he begins to put it in context and builds it into his vocabulary. Now if I sneeze he says "Oh bless you Mammy". He might not tell you his name when you ask him but at least he's polite when you sneeze! :)

Bye Bye 2010

I have decided not to do a Christmas post as it has not been a particularly great Christmas. It has been ok, don't get me wrong! I mean nothing terrible happened. It's just Everyone in the house has a chest infection, therefore Christmas has been spent in coughing fit surround sound. We did manage to have a really lovely Christmas dinner at the parentals house. We did not get to see the rest of the family because EVERYONE is sick! So it has been a strange Christmas to say the least.

I do want to say goodbye and good riddens to 2010. I have spent the majority of this year trying to wade through our waiting lists here in Ireland. Whether it be for schools, assessment of need with the hospitals, DCA, Carers allowance, or just waiting to see what the hell the next step is for my brilliant little boy. I said goodbye to my job and became a stay at home mam /Carer/Domicile Administrator/ Desperate Housewife whatever you would like to call it. I never imagined this was the end of my career at 24. Maybe it's not, who knows? I hope not. I think I have a lot to give and right now I know my little man needs me more than any employer and that is why, in this job scarce climate I took the leap. I had many doubts when I left. Aside from the significant reduction to our household income, This was the first time I faced Autism head on 24 hours a day. It is a scary place to find yourself for the first time. I think only mothers of autistic children can totally relate, it is not easy to describe the ups and downs you experience.
 Christmas Eve we finally received the psychologists assessment report that I have been fighting for. This report allows us to apply to the ASD specific units which is the first step in the right direction (so I've been told). We still have to wait 8-10 months on services. So to date no speech therapy or occupational therapy for Diddles. I am attempting to study it myself and putting it all into practice is difficult but has been successful!

This year has not been ALL bad, Madman had all his firsts.It has been So brilliant seeing him hit all the milestones. Crawling,First teeth, First steps, first words, first DIVE OFF THE KITCHEN TABLE! (''.)
Diddles taught himself to swim. It has been our first year in our house and we do love where we are now.

Which brings me to my new years resolutions........

I usually would say no resolutions but this year I feel the need to make a small few .....

#1 Get diddles therapies & school in place for 2011

#2 Get organised.

#3 Make time for me. 

#4 Bring boys swimming more often.

Have you guys any resolutions for 2011?

Happy new year! I hope it is a better year to all of us! xxxxxxxxxxx

Chalk and Cheese

It has been brought to my attention quite a bit lately by family and friends how very different the boys are personality-wise. Diddles was so placid as a toddler compared to our mischievous Madman.

Madman finds humour in doing the Dare Devil thing. Doing everything he is not supposed to. As cute as a fox and the Artful Dodger of the two! If it can be done he'll do it and if it can't he'll still give it a go.

For example and to name but a few he has cart-wheeled out of his cot head first (just for the sheer fun of it), is afraid of neither man nor beast. I caught him trying to feed his uncles rottweiler through a gate once at a kids birthday party. Yes, forget the giant bouncy castle and the cake there is a giant toothed animal to play with instead.

Aside from the obvious autie traits Diddles personality is really starting to shine! It is so great to see his sense of humour sparkle. This afternoon I was calling him for his lunch, usually he hears the mention of food and there is a Diddles shaped hole in the wall that he has run through to get to the kitchen table.

However, this particular time I got no response so I called him again. Still no sign of him. I walked into the hall thinking maybe he made a run for it but the hall door was locked. My heart started to race a bit so I kept calling him ..no answer. Then I heard a little giggle, I looked down to find this little eye looking at me, peeking out from behind a coat that was hanging on the bannister. He was playing with me. The big playful, cheeky grin on him. This is new for him, I have caught him lately looking at me as if to say "you big eejit mammy" if I call his name but I mean to call madman. He has the same cheeky glint in his eyes when he is doing something he knows he shouldn't. Like grabbing a biscuit without asking just before his Daddy gets the chance to eat it. He also seems to really understand some of the humour in certain TV programmes. I have caught him laughing at jokes which would be kind of complicated. It goes to show you should never under-estimate him!

Madman @ 17 months

Diddles @ 12 months

I love to hear him laugh! It is so contagious!

I do think looks-wise they are the absolute spit of one another! Anyone agree?

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!

From the minute we met.....

My understanding of the word Autism is having to interpret the world around us in a different way.
Taking away basic ability to speak, understand, and feel certain things. I imagine the frustration to not be able to just communicate with your own mother. The simplest of things is the hardest task. Instead of asking as the average child would for a drink or a biscuit you have to point and pull people toward what you want in order for them to understand you. The birds singing are more distracting than someone calling your name.






I am 23 and at this tender age, many of my elders render me still a child. However my very existence on this earth would contradict them. I became a mother to my beautiful baby boy on the eleventh of January 2006. He was eleven days over due but worth the wait. Needless to say but at the age of nineteen my life was completely changed. My Fiancee and I were solely responsible for this tiny bundle we brought home from the Coombe on that freezing January day. Despite the exhaustion of bringing him in to this world I remember every second like it was yesterday.

I remember waiting so impatiently for the paediatrician to come to my bed on the ward to check (Diddles) was ok to bring home. He was eight lbs on the button and healthy as a little horse. The night before fifteen members of my family were standing around my bed at visiting time, I have no idea how they got past the security, it was only supposed to be maximum two visitors at a time. That’s my family for you , they come in their masses rain, hail or snow.

I will never forget bringing him down to the car in his carry tot. He looked so lost in the all in one fleece lined coat. My Fiancee (at the time Husband now) drove at a sensitive speed of around 20 km p/h all the way home. Ignoring the angry traffic behind him and his only interest was to get us both home safely.






I think of my poor mother scrubbing the house from top to bottom for the new arrival. I walked in the door and the house was gleaming. She stood there with tears in her eyes and wore a huge smile as she stood in the sitting room. Nanna was probably not a name she was expecting to be called so soon but as soon as she seen him she was the proudest Nanna around. She wrapped him in a blanket and sat by the fire and sent me to bed to get my rest. I must have looked exhausted because the first word she said to me was BED!






As for the other half well he drove into the Jervis centre and got Diddles his first football kit printed with his name and everything. Proud as punch to have a son of his own.

Diddles sailed through all of the milestones, first the goo-ing and gaa-ing , then sitting up and crawling and then walking by ten months. Everyone always comments on his gorgeous huge blue eyes and blonde curls. Although he hadn’t a single visible hair till he was almost two years old. His first words were “Mama” and “Dadda” then the rest began to follow nanna, grandad, soo soo, boppy all the usual baby babble. When he turned two something seemed to change and I still have trouble trying to figure out and pinpoint when or what happened but the speech seemed to slow and he seemed to not understand words he used to understand.






People started to notice that when they called his name he was barely aware and just went on playing or looking out the window at the airplane in the sky or the dog across the road.
At the time I never thought that much of it, I thought maybe he was just shy or was not interested in conversing with people he had not seen in a month. There was always something that made me doubt anything was wrong, he is the happiest child. Loving, affectionate, never makes strange.
It was one of my aunt’s that pointed out that a child she was minding the same age as Diddles had been speaking in small sentences and understood simple words that Diddles could not seem to grasp.
He was always engrossed in playing with his trains and cars and lining them up on a table or window sill, he would close one eye and squint the other while rolling the lined up toys past his eye.

This did not seem particularly strange at first but then he started to do this with everything.
He would line up pegs, DVD boxes , lego, you name it he would line it up.
When Diddles was two and a half Myself and his Dad got married. We were together five years at that stage. We were young and we did get a few funny looks when we told people we were getting married but we did not care. We both knew exactly what we wanted. Family life is really important to both of us
It was around this time that Diddles' sleeping patterns were almost impossible to cope with. He did not sleep at all during the day and yet he could lye awake laughing hysterically for sometimes hours, He was just never tired. This was the point that I realised something was seriously not right. One night it was about 3 in the morning and I could hear him stand up in the cot and laughing. My blood ran cold it was pitch black, no lights on in the room and when I turned on the light he did not even seem to notice, he continued to point to the corner of our bedroom and laugh. It was more the fact that it seemed like he was looking past the wall in our bedroom that frightened me.
 Then all of a sudden he developed the habit of running up and down the hall back and forth repeatedly for long periods of time. I would have loved to know what was so funny! At this point I was getting on edge about the whole thing, but every time I mentioned these little habits he had I was told he was just burning off energy or he'd probably had too much sugar or some other excuse.

Diddles went for his check up when he turned three, we had an idea something was not right but like any parent you want to think your child is perfectly healthy. It was always a phase he was going through. Like trying to potty train him. I tried when he was two and a half, he was having none of it. I tried again when he turned three still not a hope that he had even the slightest bit of interest. When I asked other parents how they trained they children they always responded with boys are so much more difficult to train than girls.

The nurse had asked him what his name was and he wouldnt respond, she asked him to point to the cat in her book and he was not at all interested. He just went around the room on his own agenda babbling away to himself in his own little language.
This was when I looked into speech therapy, i still had no idea at this point it was anything other than speech delay!!

I spent a few days looking up information about speech delay and local speech therapists, I emailed a few and one got back to me living close to my mam. She came out for an interview type session with myself and Diddles the week after his 3rd birthday. At that time baby number two was on the way.

The therapist observed Diddles in the living room, How he played and sung his songs to himself. He didnt have much eye contact with me at this stage so needless to say he barely seemed like he noticed we were in the room with him.

I informed her of his little habits, interests and daily routines. She didnt really give me much feedback other than to say he needed speech therapy and she would begin with the Hanen Method. Which to sum up meant to get down to eye level when speaking to him, Label everything, to use simple short sentances to help him understand. These were things I had been doing myself with him already and I had not seen much result from it but she told me to persist.

I knew he loved music and singing so I made him some CD's of nursery rhymes for our car journeys as I knew it was the only place he would not be able to run away or get distracted. This worked brilliantly he remembered every word to some of the songs after only hearing them twice. He recited his ABC's not perfectly spoken but I could understand him. He recited numbers one to fifteen. He knew his animal noises. I was so excited that this had worked and was wondering what the next step was...





The next visit with the speech therapist I told her the progress he'd made since her last session. She then advised me that this symptom was called Echolalia (repeating words or phrases in place of normal language). My heart sunk, while it was great he could repeat the words and songs it did not by any means solve the problem. He had to understand the meaning of what he was saying. She did activities like blowing bubbles and playing with blocks and shapes and colour matching. Slowly but surely he began to sit for longer periods of time but still no longer than 5 minutes or so.
By the time I reached about 8 months pregnant I was finding it so difficult to manage him, alongside the breathlessness and hormonal outburst pregnant women do experience, I found myself constantly angry and stressed out and absolutely exhausted. Working 9-5 on a 5 day week driving to work and spending hours sitting in the car in traffic and then getting home doing speech therapy, playtime, bedtime and potty training I genuinely dont know how my head didnt explode. Not to mention his staying awake for hours giggling inappropriately. I left work for maternity leave three weeks early. I was exhausted!!  And a new baby almost ready to arrive. At that point my social life had shrunk to zero dont think I actually spoke to anyone outside the people that happen to cross my daily routine.

One particular session the week before I was due the speech therapist mentioned the word Autism to me. I had no idea what to expect from this. She told me of another child she was doing speech therapy for that was autistic.
She explained some of the symptoms which to me sounded an awful lot like habits many  regular kids would have. She warned me "what ever you do don't look it up on the internet!" Well that was like walking a tight-rope and not looking down! 
As soon as she left I googled and googled and googled some more!!I educated myself in all things Autism. It was very scary but I was so thirsty for information, something was not right with my baby boy and I wanted to fix it.
I knew pretty much straight away what was in store for our family. The penny had dropped, now I had to deal with it. I tried speaking to my other half about it but he was having none of it. He wanted a professionals opinion and that was that. It didn't matter what I said or thought or how much evidence was there nobody wanted to believe it. I was devastated and nobody believed me. I have never felt so alone in my life as I did at that moment. It was like everyone thought I was jumping to conclusions, Like I walked into a room of my closest family and friends and started choking and people were just telling me to shush. I had argument after argument at night with my husband. I could understand his point, I wasn't a professional and had no experience with Autism or anything like it for that matter, but a mother knows!! and if he had of admitted it back then HE knew just as well as I did.
Baby no.2 arrived on the 21st May 2009 @ 8.06am. 7lb 8oz and gorgeous.

All the stress was forgotten about from the previous 3 months. I was in love all over again. Madman saved me from a scary place I was heading. My little superhero. Diddles immediately was amazed by Madman. He started following simple instructions like "get the bottle" and "put this in the bin please." His language doubled and his understanding improved immensely! At that point I had spent at least two full straight hours a day doing flash cards and imaginary play, that was if Madmans feeding and sleeping times were working in our favour. I got into the frame of mind as to stop thinking about it and just do it. I didnt give myself time to think about it. I was bridesmaid for my Mam in the August so we all were kept busy running around with preparations for the Wedding. I was not due back to work until November so every minute was planned.





When september came we decided to send Diddles to a playschool to see how he would cope with the teachers directions and to put him in a social situation with kids his own age.
He loved the fact that his routine had become fun, he got to paint and play for a few hours four days a week. Again the teacher mentioned the word Autism and I went back into research mode. When Diddles was in playschool I would get home go on the laptop and search and search until I found what I was looking for. I didnt neccesarily know what I was looking for but I knew I would find something. I found the Generation Rescue website again, It led me to other sites closer to home like Autism Ireland and Autism Awareness.





The good that came out of researching on the generation rescue website was that I was clued up on the Gluten free casein free diet. I was ready to start it but my husband was not convinced and I didn't want to push him in to it. The speech therapist suggested we see a clynical psychologist she worked with. We brought Diddles down to him for a consultation and he interviewed us about Diddles. He observed Diddles playing with my mam in a playroom with a two way mirror. We filled out a detailed questionaire on him and at the end of the consultation (not a diagnosis) he said he was going to assess everything we had given him that day and get back to us. He said he already knew from that hour what the feedback would be. When I questioned him he said yes your son is on the Autism spectrum. He might as well have got a knife and stabbed me in the heart. Hearing this from someone other than myself was shocking, even though I knew the outcome I was devastated. However I was delighted that day my Husband heard it from the doctors mouth. I was not insane!!!! 
After we left the doctors office we (me, other half , mam & diddles) got into the car. I was trying to swallow the huge lump in my throat while explaining to my Mam what the Doctor had said. Her initial reaction was to say it will be alright and not to worry we'll all work on him. However that didnt stop the two of us, we were in floods of tears! I didn't want to see or speak to anyone. I just want to lock the hall door with just the four of us, our little family and live life as we knew it. It was only other peoples reactions that got me feeling upset and anxious. Unfortunately to get any entitlements in this country the kids have to have a label. The problem now was getting the label. The cost of a diagnosis privately was insane and we just did not have that kind of money, we just bought a house, I was still on maternity leave, new baby and we were still paying for speech thereapy @ €90 per hour. Our only options was to get on the waiting list to see consultant in Childrens Hospital. Our GP sent off letters of reccomendation to see the paediatrics team for assessments. These were actually letters to chase the appointments as we had been on waiting list since he turned three!!
About six weeks later we received letter from one of the hospitals saying they could see us in June 2010. I was so angry and frustrated!! Thats just about a year and a half on a waiting list to just be seen not even for a diagnosis. I asked my GP was there anything we could do to speed this us and he said this was due to cutbacks the hospitals were not replacing staff if they went on maternity leave etc etc. He said to hold out for the other hospital and see what time frame they gave us. Everntually we got a letter from them saying they could see us in February 2010. This was still frustrating but at least it was closer.
In the mean time we decided to try a few things like the GFCF diet. This was a big challenge still is today. There is not an awful lot of food left if you take away wheat and dairy!! Poor Diddles thought he was being punished god love him! He could have fruit veg and meat and dairy was replaced with rice milk and soya. No more dairy milk buttons or crisps or ready brek  or pizza. We soon realised that if you look hard enough you'll find replacement products for almost everything. I have yet to find decent cheese, but other than that 3 months down the line and he is very happy on the diet. His speech has doubled, I'd even say trebled since we made the change. His eye contact is a hundred times better, His play methods have changed, his attention span is longer. We also put him on threelac vitamin supplements, with the combination of these the diet, playschool, Madman and his nanna doing trojan work with him and speech therapy. Its almost like someone flicked the light switch in his head and he's back to us, we did feel a little bit like we had lost him for a while. He can now say "Apple please" or "chocolate stars" or "love you very this much" "Bedtime night night." I cried the first time he said "lub you" he wasnt very clear but I understood him.These are the simple things at the age of 4 you would expect to come so easily and yet they seemed like his first words to me all over again only extra special.
He is still showing alot of signs of Autism and I know that will not likely leave him easily.
My point is he is such a placid child. Very happy in his own company. We are working on his social skills this is the next battle for us. If he could master this we would be very happy!
We brought him for an interview with the principal of the mainstream school where we live. He walked into the office and sat down. When the principal asked him his name, he couldn't answer, he picked up his keys off his desk and asked "what are these ?" and still did not even acknoweledge him. I asked Diddles to take off his coat and he chanted after me "take off your coat, take off your coat" and he took off his coat. He didn't respond to the principal talking to him. He does that when he dosen't know someone. Then he will warm to them after five minutes or so and he'll begin to make eye contact, he might even go and sit beside them. He spent most of the time in the office babbling and singing to himself. He found 3 poster cylinders behind a book case, each one was about a third of his height. He balanced each one perfectly on top of the another. The principal pointed out his dexterity was excellent. His conclusion on the meeting however was that he didnt think Diddles would benefit from a classroom of thirty other children and one teacher and we should wait until next year to send him to the Austistic unit being built in the new school. This made perfect sense to us. We left the office happy enough with the outcome.
Then a thought crept into my head while walking through the school yard. It was lunch time so there were loads of kids out playing, laughing and chasing each other. The thought that Diddles might not have a normal school life, will he always be in a special needs unit. I know how bright he is but not many others do. I know I'm biased but he is capable of so much. I mean Einstein and Mozart were on the autism spectrum they didn't speak until they were 4 and look at their lives. I'm not saying Diddles is Einstein or anything I just mean its possible that life is not defined by autism!