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...