Tiaras Tears and Tantrums...

Today I took Munchkin to have some passport pictures taken... What should have been a simple task turned into a monumental task of epic proportions to cajole a completely reluctant Munchkin to even look towards the camera never mind get one that would meet the strict passport criteria! Thankfully it didn't need to be perfect as was just for school purposes but I really didn't want to send in a picture of a wailing, red cheeked tear stained child to have on permanent record!

I have used the chemist before to have a passport picture taken of the little boy I worked with previously. That was also a challenge as was for an actual passport and he didn't want to play ball either. I knew this was the place to go to as the staff working there have the patience of Job when it comes to getting an acceptable picture. Today, they would need it. After 10 minutes of Munchkin not complying, whinging, me bribing her etc etc... I decided she needed to have a break to calm down and I took her away to have some juice and a biscuit in a nearby quiet cafe. When her face had returned to a normal colour and not some shade of crimson or scarlet, I returned to the chemist and told them "be ready"... He took out the camera, I placed Munchkin in front of the white screen and then I proceeded to leap around like an idiot, singing in an operatic Miss Piggy voice and then the impossible happened... she smiled! SNAP picture taken and job done. I didn't care at that time that I had attracted an audience who thought I had escaped from the local asylum.

I should have called it a day after getting that first task marked off my to-do-list but I foolhardily plowed on with my next mission... getting some new shoes for her. I won't go into details but it involved me walking out with her new shoes in a bag, her barefoot and having a mini meltdown...

You would think then I'd go home? No, not me. Being a total glutton for punishment I headed to the local supermarket as needed to collect her birthday cake for her party tomorrow. I think it was total sensory overload for her at that stage as the manager ended up coming over to see if he could assist us at the checkout as she was in total meltdown at that stage. Her big sister was mortified with her behaviour at this time so we just rushed through, shoving the purchases higgeldy piggeldy into bags. All the time, the manager was trying to talk to Munchkin about Santa not coming to naughty girls and for once, I didn't bother trying to explain her aspergers, I just adopted her attitude and decided to blank him too...

My little princess is fast asleep now and I just looked in on her and smiled at how beautiful and lovely she is. Days like today are not too often and the lesson I have learned is to not leave everything on the long finger til I have to do it all on the one day. I didn't prepare her for what we were doing today either so I only have myself to blame when it all goes wrong!

"What... you want me to eat that??"

Every day, I sit and wonder what I'm going to cook up for Munchkin for her breakfast, lunch and dinner. I think about what stains least when it's spat back at me. I ponder the thoughts of just giving her biscuits and her milk for an easier life... but the responsible parent deep within me knows I must at least attempt to get her to eat something slightly more nutritious than a box of Maccy Dees fries and burger meat (no buns, no sauce and definitely no pickle!!)

I'm not alone in this curious battle to get my little girl to eat. A huge percentage of children on the spectrum have issues when it come to foods and what they will accept on their plates. When Yani was little, she was an atrocious eater and I looked for help from my GP who said to me at the time "no child will willingly let themselves starve to death." I do believe though, that I have met some girls who's children would rather starve than eat what is presented to them.

Munchkins food issues started very early on, even when feeding her myself, she wouldn't let me hold her close, preferring me to lie her on the bed beside me and would only take a small amount at each feed. When I returned to work and my friend was minding her, she point blank refused to feed from the bottle and my friend frantically was dripping milk into her mouth as was worried she'd dehydrate before I returned! When she was introduced to solid food, she would only eat pureed foods and would choke on lumps of any type. Forget about chewing...

Before diagnosis, I read up a lot about food issues as slowly but surely, more and more foods started dropping off her list of accepted foods. There was a definite problem that needed addressing fast. I had a feeding assessment done which I blogged about here, and that showed up that it was definitely a sensory problem she had rather than a behavioural one so the battle to introduce new foods began...

I read a fabulous book called "Can't Eat, Won't Eat.. Dietary Difficulties and Autism Spectrum Disorders" by Brenda Legge which explained very well to me the different issues our kids have when it comes to foods. I laughed out loud at one woman's description of variety in her child's dinner was if she was allowed to put the ketchup to the right of the nuggets and not the left! It is well worth a read and if you look at this link you can read the first few chapters and get a feel for the book.

For months and months, Munchkin would eat the same dinner every single night. Pasta with Bunalun Organic Tomato and Vegetable sauce... On the advice of the feeding therapist, I allowed her to have the same breakfast and dinner each day and only had to battle with her at lunchtime to at least try a new food. Using reinforcement and promise procedures it took a long time, but eventually I managed to get her to accept a few new foods. We now had pancakes, pasta, sauce, yogurt, fruitapura, crackers and salmon in her daily diet. I was delighted to have a variety of foods I could offer her (I know that a lot of readers would think there was a very limited range of foods there but considering some kids will only eat one or two types that was a lot!) Then disaster struck... she stopped accepting pasta and sauce at dinner and would nearly throw herself out of the highchair to get away from it!) I needed to find new foods....



Nowadays, she will eat a bit more for me and even last week ate her very first piece of birthday cake! I nearly danced with joy when she picked up a fork at a friends birthday party and without me even suggesting she try it put some in her mouth!! A huge milestone for Munchkin.

Dinner these days is usually spaghetti bolognaise with spiral pasta shapes (if you change to a different shape it's not accepted) I have her eating bananas and a variety of potato shapes and waffles for lunch, and she now tries dairy free chocolate (no daughter of mine could go through life without chocolate hehe) She still wants to be fed as doesn't want her hands to get sticky, and will not eat anymore if any is spilled until it's cleaned up but its not as much of a struggle these days as it was...

Friends who just "get it"...

I'm currently blogsitting for the lovely Hammie on her work blog and it got me thinking to friendships that have evolved since Munchkin got diagnosed... Like so many mothers of children with special or extra needs, it's not until the chips are down that you find out how strong your friendships are as you become almost consumed by all the therapies, appointments and all the extra needs that your child has on a day to day basis. Autism has an almost instantaneous grip of your life, spreading and seeping into every aspect of what you do. It controls where you go, when you shop, what your child wears and so on and on... Needless to say, you become almost obsessed with finding out everything you can about ASD, and its a huge spectrum so this takes up a large amount of any time you may have. Whilst your friends you have may have even grown up with, can show some empathy and sympathise that you cant "take Johnny to the playground because its next to a main road and there are two exits", very soon they may tire of hearing about the extra needs your child has. This is why it is so important to have a support group or network of friends to talk to when things are getting you down, or if you're having a hard day as they "get it" without even having to explain. All you have to say is "shes nudie again" and they'll understand that you may have had to put your little ones clothes on ten times already that day! You don't have to explain why you need to put clothes on back to front or sew the zip up on all-in-one pyjamas... they just get it!




One of the first places that people look for information on their childs diagnosis is the internet. While you can get very useful information via the web, you also have to be so careful what you read as not everything that is printed or put up on the net is scientifically tested or tried. Whilst trawling through web pages myself, I joined a parenting website Rollercoaster and found a huge amount of support from the girls on the Special Needs forums. After posting there for a number of months I started to get to "know" some of the girls. One mother posted me on some Hanen books and we got chatting. We both signed up to Facebook so that we could see pictures of each others families and found more of the Rollercoaster girls on there too. Hammie had set up a Facebook page for Irish Autism Action and we found her and when she added us she introduced us to huge amount of autie moms and that's where I found my real support network! I'm not saying that family and friends can not be supportive but there is something amazing about having the support of friends who may not walk in exactly the same shoes as you, but wear a similar size and type!




I've been using Facebook for over a year now and the majority of my "friends" are parents of kids on the spectrum and we fondly refer to each other as our "Autie family." Any new parent who joins us might not understand immediately where the "support" is in our group, as it looks like a bunch of people doing quizzes, or playing Farmtown or sending each other gifts or hearts... But look a little closer and you will see someone post a status saying they're having a tough day... very soon there is a handful of parents online, asking how they are, sending them support and generally just letting them know they aren't alone (which is so important in my books). You don't HAVE to do these applications and no one thinks any less of you if you don't. Status updates are often questions looking for advice or just statements of how you are feeling. Lots of parents use them to celebrate the big and the little achievements our children make :) There is also the private mail facility where you can ask selected friends advice if you have a sensitive subject you wish to discuss, and don't necessarily wish to post to your profile. It really is a wonderful resource at your fingertips, especially if like myself you cannot get out to support group meetings very often. Regardless of what time I have ever come online, if I can't sleep or for any other reason, there has always been someone else online at the same time as we have members of our Facebook group in all continents :)




"From little acorns great oaks grow..."

Social Stories with Peppa Pig...

Jazzygal did a great post on her blog recently on obsessions and using them to harness your childs skills such as hand eye coordination, fine motor skills, communication and problem solving, and as I read it I couldn't help but think about Munchkins obsession with Peppa Pig and other television programs. I don't know what exactly it is about that precocious little piggy that seems to catch her attention more than any other character has but I am grateful to the makers of the series as they have provided me with one of the most valuable tools I can use with Munchkin... Social Stories.

You may laugh at the thought of Peppa Pig as a tool for autism but I firmly believe that she has smoothed the path of visits to the doctor, dentist etc admirably. For every situation we have encountered, there seems to be an episode that relates to it. I remember having to bring Munchkin to an eye test and prepared her for weeks beforehand watching the episode where Peppa goes to the optician... We had to wait as they were running late so she started acting up... By the time we got in she was a bit wound up so I reminded her that this was like when Peppa went to the optician.... The Orthopist corrected me haughtily so that was enough for me to crack... I growled at him "Until they make a Peppa Pig episode with an orthopist... you're a damn optician.. RIGHT!" I was a bit stressed....

You don't have to buy expensive tools or kits to make social stories work for you. I have seen excellent social stories with hand drawn matchstick men which can be very effective. The web has lots of free drawings you can download and print off to do your own. One of my best purchases was a Tesco Value Basics laminator and I print off pictures and with my glue stick and laminator have made practically indestructible story books.

I took a series of photos for my niece over the summer when she left her beloved "Ducky" at my house after a visit and posted them onto my facebook page everyday so that she could follow "Duckys Holidays" until we were able to reunite them (posting wasn't an option in case he went awol...) I was surprised how many professionals got into the spirit of things and let me photograph them with the stuffed duck when I explained what I was doing. He visited the dentist, the doctor, the pharmacy and the hospital (xray dept for the Elder Lemons pneumonia which this bad mother was just giving paracetamol and sending him off to school!) These pictures can now be used for future social stories I have to write for Munchkin too...

"Perspective Parenting"

As a reader of several great blogs, I have noticed a lot of discussion on a certain blog where a mother vents her anger and bitterness regarding her childs ASD diagnosis. The New York Times also published an article called "The Unvarnished Reality of Autism" which was a reaction to a stress study on parent of children of autism. I truly feel for the mother whose reaction to this study was published and am glad that names were withheld for her childs sake. To go through life feeling this bitter and twisted must eat away at her soul everyday! I can't help but worry how her son will feel if he reads his mothers words when he grows up too and realises how much his mother resented her life with him... It made me sit back and question why I am a positive parent and haven't been consumed by the sardonic cloud that seems to envelop others. I think the answer lies in "Perspective Parenting", and the definition of normal.

I have been blessed to work with a lot of fabulous families over the years in my job and meet some of the most amazingly positive people. The children I work with all have varying degrees of disabilities, both physical and intellectual but all severely effected. They are all great kids, with different personalities, likes and dislikes with the one thing in common... their smiles light up the room. When I first started working with them I would have to "look past" the disability where four years down the line, I see the child and not the restrictions their disabilities place on them. I have the utmost respect and admiration for the mother of some of the kids I work with. Where it could be expected of her to feel bitter or depressed, she is without doubt the most positive inspirational person I have ever met. Instead of wallowing in pity, she started a support group for parents of special needs children, councils and helps others, has unending energy and time for her kids, and is always celebrating any small gain they make. My life is a walk in the park in comparison so when I start to complain about Munchkin bolting or running off, I thank my lucky stars that she can without the aid of calipers and frames. When I moan about Munchkin not eating many food types or not wanting to try new foods, I remind myself to be grateful that she can eat, that she doesn't have to be peg fed, that she doesn't aspirate fluid from her foods down into her lungs.... When I get frustrated that Munchkin is still not toilet trained, I think of the health board nappies that she won't have to get as she can be trained, even if it takes a little longer. Perspective... its a great tool to use when it comes to giving us a self administered kick-up-the-bum! I'm not saying as a parent of a child with special needs that you can't attend a "pity party" occasionally, but don't overstay your welcome and become a permanent resident!

Instead of dwelling on what Munchkin can't or won't do, I prefer to celebrate what she can do. She is an amazing, happy fun little girl and her possibilities are endless so long as the people who love her stay positive and never clip her wings with negativity and disappointment. Another mom I talk to asked me recently when I was telling her about certain events in my life "how do you stay normal?" Am I normal? What is normal? I don't know anymore. To me, my life with my three children is "my normal". Hammie from Hammiesblog coined a great phrase recently which I love "Neural otherness is awesome" Says it all really!

Full House of Alphabet Kids...

Image by Leo Reynolds via Flickr

Following a lot of discussions with fellow mothers of children with various disabilities, I noted that a lot of parents who already have one child with a diagnosis are often accused of "looking for problems" in their siblings... It is astonishing how many are told that they "want" something to be wrong, or that they are "disappointed" if everything turns out to be alright after worrying about their development. With autism, what most people don't realise is that after one of your kiddies has been diagnosed, your Autie-radar is switched on permanently. We read up on everything we can find to equip ourselves to deal with the diagnosis, and keep informed of current therapies. The life of an autie or aspie mom is a busy one of constant appointments, research and reading in order to help our child as much as possible. If your child had broken its leg, you would do exercises and physical therapy to help heal once the cast is off so that the muscle doesn't waste and your child can be up and running around again. Is what we do any different? No, only we are exercising our childs brain and training ourselves to be the most important therapist your child will ever have. With all this information going in, it's natural we will start to look at any behaviours in another sibling differently... What we may have written off as the terrible twos/tumultuous threes/fearsome fours etc. in our first baby, when we see behaviours in another child, we look at them in more detail to see if there is anything underlying there so we can intervene and help that child too. Does this mean we "want" something wrong with our child?? Hell no!

I had the opposite happen after Munchkin got diagnosed. As I said in a previous post here when my son got diagnosed with ADD it was a bolt out of the blue and something I could never have imagined. Had I been more aware of disability when he was younger, I would have noticed the signs as they were there but I just didn't see them! The tapping, the wandering off, his constant loss of attention, getting distracted in shopping centres by something that has caught his attention and just going to have a look without informing anyone... these are just a few of the things I never noticed at the time. It never occurred to me that there could be a reason for it.

When my teenage daughter came to me and asked to see the doctor, I put it off as long as I could as didn't want people thinking I was "looking" for problems... As her mood swings got worse and her intolerance for certain sounds drove her to eat in different rooms as she couldn't bear the sound of people chewing (even with mouth firmly closed) I knew the time was coming that I'd have to deal with her problems too. She was making lists of characters in TV reality shows she was watching, and HAD to control the television. No one was allowed to use the remote but her and if anyone tried to.... well the outburst was not pleasant. More than one remote got shattered against the sitting room walls... I started to wonder if this was more than attention seeking (my original denial to myself as didn't want to believe that all three of my beautiful children had problems) and looked in more detail. She was depressed beyond belief and when she came to me and said she'd thought of ways to kill herself that sprang me out of my denial and I made the appointment to see the GP the next day. Once again, it was another €55 to be made felt that I was looking for problems (see original post here) My poor Yani walked out of the surgery after being told to "snap out of it" and to "look for something positive when someone annoys you"... BUT, I did get my letter for the Child and Adolescent Psychiatry Services to have her assessed which is what I went there for. I hadn't expected anything remotely like empathy or understanding from the doctor so wasn't disappointed when it wasn't forthcoming (she did up my dosage of antidepressants though as obviously thought I needed that!)

I organised counselling for my little girl and rang the CAPS myself. Once again, they were wonderful and we weren't waiting too long to be seen. Yani was subsequently diagnosed with ADD, clinical depression and traits of OCD and she was put on Prozac... I now had a full house of Alphabet Kids...

People often when they find out about all three having a diagnosis will tell me they're sorry.... I don't feel sorry for myself or my kids, we are who we are and are working towards making life a little less stressful for ourselves through intervention, communication and understanding. Our house is never dull, and we certainly could never be compared to the Brady Bunch. We are close and even though there may be a lot of fighting at times, the teenagers are good kids. A day doesn't pass without hugs and kisses from them :) I love you kids xx

Steps towards acceptance...

The weeks following our visit to the Professor were filled with moments of confused and conflicting emotions as the reality of the diagnosis settled in. I think that it is an important step that needs to be taken before acceptance can finally happen. Some days were spent with moments of great sadness, some anger, a pinch of self pity and finally acceptance. Munchkin was oblivious to my distress and confusion, which when I look back at that time is a blessing as I'm sure she would have found my constant mood changes distressing and bewildering had she understood my feelings...

Slowly, and most certainly not overnight, the moments of positivity started to become greater than the moments of depression and after a very brief pity party, we got up and moved on with what needed to be done. Every day, I would wait anxiously to see if the written diagnosis and report would arrive in the post so that the next steps of applying for things like the Domiciliary Care Allowance and Home Tuition could be taken. It seemed like months we were waiting but in reality it was closer to three weeks... Then the day arrived.

I ripped open the envelope and read the report. Even though I knew what was being written in the letter, it still surprised me how shocking it felt to read it in black and white. I made a cup of tea and let a tear run down my cheek as this was one of the moments that merited allowing a little squeeze of the heart and a little cry. There was more post to be opened. What I opened next would send my mind back into turmoil and confusion...

The AMO who had done the assessment in the July and the MCHAT scoring had sent a report back to the paediatrician I had seen previously. As in my previous post here she had agreed that there was indeed a problem with Munchkin and had urged me to apply for the Assessment of Need. The letter I received from the paediatrician, the same morning I received the written diagnosis, pulled the rug from under my feet. It was a scathing snide letter insinuating that all Munchkins perceived problems were in my head. Statements such as "inconsistent with her mother's concerns that ******* has autism" "she is young" "The Schedule of Growing Skills was very reassuring and maybe the echolalia and her difficulty understanding her own mothers speech may be due to the fluid in her left ear and not due to any difficulties with communication like autism".... once again I was left feeling as if I was being accused of Münchausen syndrome

The old feeling of self doubt started creeping back in and my transition to acceptance had been given a huge setback. It would take a few weeks of self searching and constant questioning to get back to where I had been before reading that letter. When thinking back to it now, I feel immense anger that someone I expected to trust, and indeed the first professional to take me seriously could make me feel this way. It made me realise that we are not "people" to some doctors, merely a name and a hospital number on a chart. Months later, when I saw the AMO for the DCA assessment, my faith in some doctors were restored when she remembered Munchkin from the original assessment and when shown this letter from my file, was extremely irate that we had been treated this way. She promised that it would be raised in a meeting that footnotes of observations must be considered along with the MCHAT and Growing Skills scoring charts. I sincerely hope this is the case now for the sake of children undergoing these assessments now...