Where we are now....

As I sat and perused Munchkins files tonight with a friend whose son has recently got a diagnosis of autism, I looked back with amazement at how far she has progressed. When I realised that a mere 11 months ago, she had a handful of rote phrases that she said such as "ready steady go" and "splish splash splosh" (from the Rubberdubbers), I had to re-read the questionnaire that I had for the psychology department as it seemed impossible to me that it had only been filled out last November... but indeed it had. The forms had been filled out and I had copied them as part of our Assessment of Need process which was supposed to have been completed within a six month time frame and a Statement of Need issued. In reality, it took sixteen months to complete, and we would probably still have been waiting if we hadn't been such a squeaky wheel! Looking at the forms reminded me that Munchkin had only just started to call me Mummy at that stage, at 2 years and 2 months of age (and what a feeling that was!).

We finally had our last link in the AoN process carried out ten days ago so apart from waiting for the Statement to be issued, its over! I was so nervous attending the psychology evaluation as was terrified of being made feel crazy as she has progressed so well now! The assessment took 2 hours to complete, and Munchkin was a complete angel during this time (no, I didn't give her Smarties washed down by Red Bull to show her at her worst hehe... it's just they are not on her list of accepted foods lol)...

I had heard a lot of negative comments regarding the psychologist that we were seeing so I had already formed an opinion of him before we even stepped into his office... I won't be so narrow minded and blinkered in future as I couldn't have been more wrong about him. Its indeed a lesson to reserve judgement until you have all the facts and not let yourself be swayed by others opinions. I found him to be friendly, open and approachable. He went through the complete cognitive set of puzzles, boards, books etc with Munchkin scoring her appropriately. She did try to control the sets but without much luck. At the end of the session, we talked for approximately half an hour and he concurred with the diagnosis the Professor had given her of Aspergers. Then he gave me the IQ scoring... 80-110 is considered in the normal range and she had scored 88, which meant she doesn't have what they class as a learning difficulty. It did surprise me somewhat that she hadn't scored in the higher end of the average range. I don't wish my child to have a "gift" either so I don't know why exactly my gut was squeezed a little... She doesn't care what her IQ is so it must be my own ego that was disappointed and I remind myself that it shouldn't matter anyway! (silly vain egotism go annoy someone else...) T'is only a number!

She has settled remarkably well into her new preschool and I am delighted with how much she loves going in every morning. There is a lead teacher and 3 snas in the class with 7 children so she's getting lots of attention and learning well. It is a mixed group of special needs children with intellectual or physical disability and she's mixing well with them all. A few transitioning problems and her staying on task needs a lot of work as she can't be Cyclone Munchkin whilst there and must participate with group circle time etc. They have yet to get her to even try yogurt as its "sticky" but its early days yet so we'll keep at it. She's staying on longer on a Friday from now on as they do an eating plan with some of them so that will be good. Potty training has been a bit hit and miss over the last few days but we're getting there slowly...

On the Home Tuition front, we have finally ended the saga of the "missing SENO" (the one who decided in their infinite wisdom to release the forms for signing and go on holidays for 3 weeks a couple of days later, leaving lots of families in limbo!). After squeaking a lot and become a regular pest, the Senior Seno finally organised someone to sign Munchkins forms so I could get them to the DOES. With a couple of dozen more calls to them... the hours were sanctioned :) Then then next paragraph... tutor only sanctioned til Oct 31st as not meeting the full qualifications of the department..... OMG she has a psychology degree, years of teaching experience etc... But no, they want me to find a primary school teacher who may or may not have experience with children on the spectrum! Muppets!! I once again start the next round of "satisfy the dept" by looking for a suitable tutor. Then I found one! I think I must be a cat as fell on my feet this time. She's the teacher in an ABA unit and highly experienced. We arranged to meet for a chat and I found her to be extremely capable, friendly and thought she's exactly what Munchkin needs. She started today and immediately Munchkin accepted her, played with her and liked her. I feel that she liked Munchkin too so hopefully, and fingers
crossed, its going to work well :)

I can allow myself a little breather for a few days now before the bedlam starts all over again :)

A Night to Remember...

The end of September is closing in fast and I haven't given the blog as much attention this month as I should have as have been preoccupied with arrangements for school, games such as "Hunt the SENO" and "Pin the reports on the DOES"... There was also the run up last minute arrangements for the first "Facebook Autie Parent Night Away" that was held last Saturday night in a Temple Bar hotel where almost 50 parents managed the difficult feat of arranging childcare and spending the night in the very good company of other parents who understand our kiddies needs. I blogged here about the importance of having friend who "get it" and was delighted to meet so many of the friends I have made online last Saturday.

It was an incredible experience to talk to so many who share a common bond. Our stories and experiences may differ but over dinner, and late into the evening, there was laughter and smiles while we exchanged stories and gave and received advice from all there. As one mother posted up on Facebook the next day, it was liberating to laugh about and talk about things as diverse as "poos in the swimming pool" and other such quirky things our kids get up to :) There is already talk of another get together before Christmas and I for one can't wait!

The other effect a night away had on my life is that my family have a greater understanding of Munchkins needs now. My mother and father had her overnight, and where they may not have really seen the communication deficit very clearly before, they now can be added to my list of people who "get it". You don't realise how much you fill in for your child and translate their body language etc until you are not there and the communication breaks down. I am so grateful for having family that are supportive both physically and emotionally, but even more so now that they have a greater appreciation of what my little girls difficulties are. It saddens me greatly that there are so many girls I talk to online that lack this type of support as may be living a distance from their families. We have all found each other to watch our backs and give support to one another but how many others are out there with no lifeline to cling to when times get tough? If you know someone in your community that may need help, reach out and let them know they are not alone. You may not be able to offer physical support but emotional support is equally (if not more) important.

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!