A letter to my daughter

My darling Munchkin,

As I lay with you in my arms tonight holding you tight as you needed your "huggles", I delighted in the feel of my arms wrapped tightly around you. I looked at your angelic little face and drifted back to a time when I wasn't so blessed to be able to touch you...

When you were born, you were not content in my arms. Where I saw other mothers feeding their babies and watched them bond, I wondered why it was that you were so uncomfortable in my arms. I so desperately craved you to look up in my eyes as you fed and feel that connection that others seemed to find so easily. No matter what way I positioned you, there was never that ease as you strained away from my touch...

As you got older, the only way you were "comfortable" on my knee was to be facing away from me. As soon as you had finished the last drop of your bottle you slid off my knee like I'd electrocuted you. I was envious of the other mothers stories of how their babies would reach out and touch their faces and plant sloppy kisses on their mouths. I can admit now how jealous I was of that which others took for granted. I took comfort that you wanted to sleep in my bed with my arm across your chest even though you wouldn't let me put my hand on you. I know now that you were seeking the pressure the weight of my arm gave you but it was something that I valued greatly.

I remember reading a quote just after the penny dropped when I realised you had autism. I burst out crying as it touched home to me. It was from Helen Keller and it read "Love is like a beautiful flower which I may not touch, but whose fragrance makes the garden a place of delight just the same." I decided though that I needed to be able to touch you, I wanted to be able to touch you...

I spent countless hours with you sitting sideways on my stomach on the sofa, reading you book after book as you loved being read to. Slowly you grew to accept this as long as I wasn't trying to hold you there. I tried everything to desensitize you to the feel of my hands. As you watched your beloved Peppa Pig, I used the opportunity to stroke your feet briefly or to massage your arms. It took time but you got used to this routine and grew to like it. Every morning for half an hour before we got up, we would play the "name the animal game" and every time you did the sound I would tickle you for a brief second or two.

Holding your hand wasn't accepted by you at all. This made going out in public very difficult as you would pull away and then run to get away from me. We ended up only going out in the buggy as it was the only safe way to have you out. With the help of your tutors and the occupational therapist we worked tirelessly on getting you to put pressure on your tiny hands, rolling you over back and forth on your gym ball, making you "walk" forward on your hands to get your jigsaw pieces. We played so many games that involved touching that you didn't realise what we were doing, you just enjoyed the "game".

That almost seems like a lifetime ago now. Every time you put your hand in mine, or give me a hug and a kiss my heart feels like it will burst with happiness. You have no idea of the joy you bring to me my baby. These days you love for me to tickle your back, you give me amazing huggles ( your name for hugs/cuddles) and actively seek out contact with me. I love these moments and will never take them for granted I promise. To see you hold your friends hands makes my heart swell...

I do wish that you would let others hug you or give you a kiss though. It would make your grandparents very happy to get a big squeezy hug but the little ones you do give when asked are the small steps towards this goal. I'll be selfish and say that if you never have the ease of contact with another the way you do with me, I'll still be happy.

Thank you

Mom xxx

Whats worked for Munchkin?

Its been a while since I blogged. For various reasons I've neglected my blog and apologise to anyone who may have been following to see Munchkins progress. I'll bring you up to date with this post...

I get asked a lot "what has worked for Munchkin" as she's made such incredible progress over the years. Part of me gets a little irked at times when I think a parent is looking for the "magic solution" that will "cure" their child. Lets be straight folks... there is NO CURE for autism or aspergers but there are many many therapies that will help your kiddy reach their full potential. Its also not a quick fix or something that you can throw money at to make the problems go away. Its a hard slog and somewhat frustrating at times but with hard work and a lot of input, you can make huge strides in helping your child understand and cope with whatever issues they are struggling with.

So back to the question... "What's worked for Munchkin?"

When the bottom fell out of my World and I heard the confirmation that she has an ASD, like many I took a little while to pick myself back up off the floor, dry the tears and realise that having a nervous breakdown (which allowed me to hide in my own little world for a while), or looking for the answers in the bottom of a bottle of Cabernet Sauvignon wasn't going to help the situation. I needed to become her advocate, her tutor, her teacher and look for practical help. If I was to wait on the never ending waiting lists for therapies, it would be time wasted and lost forever. In this country you find yourself in Limbo, waiting for someone to come and fix the problem. DON'T! Find a local support group, if you can't get out get online support, join Irish Autism Action and get some guidance. There are many courses out there that a parent can avail of to learn how to teach your child. ABA, PECS, Lamh etc... YOU are going to have to put in the work if your child is going to reach their goals. I was lucky that I'd already done courses in Applied Behavioural Analysis and Verbal Behaviour and so had a head start in that I could set up a program for Munchkin. Be aware though that there are plenty of sharks, sorry therapists who will offer you xy&z for large sums of money with false hopes of curing your child. In my opinion, you may as well be throwing wads of your hard earned cash into the toilet. Whilst swimming with dolphins might be nice if you're on holidays, its not going to fix your baby.

We dabbled with the GFCF diet for a year and made great progress. On reflection, I have to question if it was indeed the restriction of foodstuffs or the intense ABA program I had implemented that gave Munchkin the push into verbalising and communicating. She has no restrictions in her diet now and still making forward strides.

In her Assessment of Need she had an occupational therapy assessment. I found the therapist to be very informative of what sensory issues and needs Munchkin had. I took notes on how to help and put the exercises into her home program. A year later, she was still on the "list" for therapy and my local support group Cottage Autism Network provided her with an updated assessment so we could see where she was at that stage. Some of her issues had been overcome and new ones came to light and I was then able to tailor her sensory diet and adjust her program myself. By the time she moved up the list after a few years, we had dealt with many of her issues. Boy was I glad I hadn't waited for the HSE OT slots....

Speech and Language she received when she attended a special needs preschool. She received daily group SLT and once a week she had an individual session with the speech and language therapist. Everything that they were working on in school we were also still doing at home with her.

Home Tuition. This was a godsend as we had the cream of the crop when it came to home tutors. The most amazing person came into our lives in the form of Ursula. She was the teacher in the local ASD unit and hand on heart, I will always be indebted to her. Finding a good tutor is paramount when setting up your home tuition program and we've been so lucky in the three tutors that Munchkin had. DON'T just leave it all to your tutor though. Become involved and work together as a team. As I said earlier, you can't just expect others to fix the problem and the more involved you are in all aspects of your childs program the better the outcome is going to be...

Socialisation. Hugely important! There has rarely been a day since I first suspected that Munchkin might be autistic that she hasn't been around other children. At first there was resistance and little interaction but now she has a host of kids that she refers to as her friends. Sure she might meet someone for the first time in the playground and tell me they're her best friend but hey, she's really social and interested in other kids now.

Play skills. We taught Munchkin how to play with her toys. This doesn't come naturally to a child with ASD and lack of imaginative play is a huge problem for many of our kids. Through ABA and a reinforcement schedule, she learned to play. To look at her now happily playing with her toys its hard to remember back sometimes when this wasn't the case. And as for her imagination... well its amazing!

School. She's now attending an ASD unit full time. It was a difficult decision whether to place her in the unit or not but I met with the school and they agreed that it would be a great stepping stone to mainstream next September. While she has no problems expressing herself verbally there are other behaviours that can be worked on while learning the social rules of school. They are teaching her how to transition and helping her focus on tasks etc. I know that come September, she'll be fully ready to mainstream.

Well that's whats worked for Munchkin... We've both learned so much over the last two years and continue to do so. I'll leave you with a quote from "Parenthood", a show I watched last week which struck a chord with me...

"The greatest barometer for success for children with Aspergers is their parents involvement"

Never Too Late To Educate...

The sun has set on the Summer and mothers and fathers all over Ireland are breathing a collective sigh of relief that the little monsters, sorry our beloved offspring, have returned to the structure and routine of the school year. Summer holidays, while relieving us of the dreaded school runs, can be a time of stress when you have a bored child bouncing off the walls. Personally I think the holidays are far too long but there is an element of jealousy there when I look at the Gruesome Twosome roll into the kitchen in the afternoon while I've been up since stupid o'clock being subjected to Peppa the Precocious Piggy and other such delights that we're all familiar with. I would gladly buy Dora a sat nav at this stage rather than listen to her singing...



This year is particularly poignant for me as my eldest heads off to spread his wings. As immensely proud of him as I am for nailing the Leaving Certificate and securing his place in Trinity College, its a strange moment to let go after so many years. His bags and belongings have been packed up and I dutifully drove him to Dublin at the weekend to start a new chapter of his life. Thankfully my parents live there so have been able to transition him slowly as he'll go torment them with his bombsite room that smells of cadavers.. why oh why do all teenage boys room smell so bad? Answers on a postcard please and a prize for anyone who can solve this lifelong riddle...

So that leaves two still in the proverbial nest. I'll still be kept busy trying to secure services and resource for the little birdies left in my care. Yani has started the senior cycle now and today we started medication for her ADD. Hopefully it's as successful in helping her concentration as it was with her big brother. She's a very clever and capable girl and its frustrating when her ADD and SPD cause such difficulty for her. She described it quite aptly at her appt with CAPS today as sitting reading the text and willing the words to go in... the information reaches her eyes and seems to bounce back to the page shes reading. Classic problem that many of our children have when it comes to concentrating and taking in the information needed to study. Fingers toes and eyes crossed that the medication filters out the extra stimulus that distract and help with her auditory processing.



Munchkin has had an interesting start to the school year... She's moved up to the number one spot on the waiting list for our local unit but in the meantime she's attending a NT preschool. For the most part its going extremely well and she skips in the door in the mornings with a smile on her face. My heart dropped when called over by the preschool leader last week to say that they were having problems... trying to escape from the playground, stripping, hitting and running around during circle time to name a few. I have a journal in school that they are filling in every behaviour and problem they are encountering with her so that I have a written record to show the SENO when she moves to the unit to make our case for an SNA stronger. Watch this space as they say.

And me? Well I'm heading back to school too as I'm a firm believer that its never too late in life to learn something new. It's only part time but nervously anticipating being a student again. I better go buy myself a lunchbox and get an apple for the teacher while I'm at it :)

Pack Up Your Worries.....

Did you ever feel like just running away... just packing a case and leaving all your troubles behind? Well I finally did it. After a chat with Mum and saying how much I needed a holiday but couldn't afford to take one, she told me I couldn't afford not to. If I were to crack under the pressure I wouldn't be any good to anyone. That's all the arm twisting I needed to promptly organise to send Munchkin to her father for a week and fill the fridge and presses with food for the Gruesome Twosome. It something I think every parent dreams of but seldom plucks up the courage (or stupidity) to do. I'm not going to bore you with the details of the pressures leading up to my bolt for freedom but suffice to say I was bowing under the considerable pressure. So off I went armed with sun lotion, mental bubblegum books that required no effort to read and most certainly didn't contain the "A" word, and the perfect travel companion whom for the purpose of this blog shall be called Vixen :)



Vixen (yummy mummy to a couple of Aspie/Auties), and myself jetted off on a whim to Tunisia where once there, we quickly settled into our new surroundings. We had decided to go all inclusive as neither of us had the energy or decisiveness after a stressful year to even make decisions such as where to eat or what to do. When you've spent all year making difficult decisions, and being the primary carer for your children, sometimes you just don't have any head space left for the mundane choices. Its astonishing though when you are so used to "doing" all the time, how slowly time actually passes as several times over the week we felt as if we were in a time warp!

We discovered our Inner Auties on holidays and on one of the last nights, had a discussion over our dinner at how comfortable it had been NOT to feel the pressure to talk, or feel the need to explain that you weren't in a bad mood, or upset, you just didn't want to open your mouth and fill the silence. That's not to say that we didn't communicate during our time away, just communicated in grunts or nods if it was the wrong side of noon... Sometimes silence is indeed golden. It was amusing to note that we sat at the same table in the dining room each night, varied our food only a little and lounged on the side of the pool in the one spot all week....

At the resort, the majority of people spoke French as a first language. Vixen has no French and I have some so it was interesting trying to communicate with others. Essentially, Vixen was the non verbal one and I was the newly verbal with my Pigeon French. It struck us that this must be how our kiddies feel when in social situations and finding it difficult. I really had to struggle to listen and found that I could comprehend far more than I could verbalise. Vixen laughed at the fact that even if she said "I don't understand", someone would speak slower and say the exact same phrase as if that would make the difference, again and again.....




At the markets, we were hassled beyond belief by the traders and locals attempting to catch our attention, talk to us, get our business and we learned extremely fast that the best and most effective way of ignoring them was to avoid all eye contact (sounding familiar?) It was actually liberating to not feel the pressure of social niceties and allow yourself to be "rude" and totally blank these strangers who wanted to invade our personal space. I found a new appreciation of why and how our kids sometimes blank us or appear not to see or hear us. Its not "rudeness" as if that was the case we'd have spent our time just saying bog off. It was easier and far more effective to just ignore completely!

All in all, I think we learned a lot from our holiday. Not only did we get to relax and recharge the batteries, we discovered a little what it feels like to be inside our children's heads even if just briefly, and I must say, I liked it :)

Better than The Brady Bunch :)

Many of my blog readers will be sick of reading how important it is to have friends that "get it" and have heard me wax lyrical on many occasions about the friends I have made on Facebook over the last year and half, but once again I'm going to tell you why this is so meaningful.

Last weekend, two girls who I now consider close friends even though we only met a year ago, came to stay for a night with their three gorgeous sons. We had discussed this visit on our Facebook pages and pretty soon, another two mums decided to pack up their kids and head for the coast on an hour and half road trip to come have a picnic with us on the beach. We all met at my house on the Saturday at lunchtime so we could go to the beach together and off we headed, armed with blankets, towels, food and high expectations of having a great afternoon in good company. The sun smiled on us and when we arrived we parked ourselves close to the waters edge, ready to run as needed. Between us we had 9 children, 2 auties, 4 aspies, 1 under assessment, 1 with dyspraxia and a toddler. Add in copious amounts of ADHD and we were ready for a fun day out...



Before long one mum was shouting for assistance to come take her phone out of her pocket as she was wading out to retrieve her young man who looked for all intents and purposes, determined to head towards Wales without a backward glance. As she managed to drag him back to land he managed to slip out of his shorts, preferring to turn the local beach into a nudist one hehe. We all enjoyed seeing the looks of excitement on our little ones faces as they paddled, crawled, rolled in the sand and did what they do best, be kids. We attracted some looks on the beach but as we are all seasoned elephant hide wearers, none of us were bothered by the attention. At times it was poignant for me to see Munchkin want to play with a little group of girls, but lacking the social skills necessary for her to join in. Despite having a vast vocabulary and excellent speech, she still falters when it comes to joining in with NT kids as she struggles conversationally.



After we had had enough of eating sand sandwiches and the beach in general, we all headed back to my house to let the kids continue to play alongside each other while the mothers were able to chat and relax a little with the front gates firmly closed. It was a very enjoyable afternoon and when the ladies from the Midlands left that evening, there were four nudies jumping on the trampoline until it was time to come in and get ready for bed. Amazingly, all four kiddies settled well that night and us mums sat chatting in the kitchen until the wee hours.



The next morning, all four kids were in fabulous form and we decided to take them to the local play centre where they burnt off some of the copious amounts of energy they store in such small bodies! Afterwards it was off to MaccyDees to meet up with another lovely FB family who were visiting the area and more laughing and chatting over our fast food before the gang all headed back to their own homes. On Sunday night, I sat and realised how quiet the house was now and how I missed the company of the girls and their wonderful kiddies.



Most people would think that having that many kids with special needs in your home would be stressful, but it was quite the opposite in fact. Not having to explain why your child likes to do naked acrobatics or why the ice pop is the wrong colour/shape/brand is very liberating. Not having to explain your childs behaviour or worry that people will think its poor parenting to allow drawing on a brown wall (well it did look like a giant chalkboard!) is so refreshing. It was also lovely to see the "friendships" between the children evolve. Whoever says that all aspies or auties are not interested in having friends is talking through their posteriors... I saw lots of bonding and even if they didn't communicate like NT kids, they were certainly enjoying each others company!

And in The Blue Corner...

Its been another busy month filled with twists and turns along the way. We finally had the verdict from our private assessment done back in February after a drawn out standoff between myself and the HSE to get access to Yanis records. Despite many many promises to provide Solas with information, the letter just wasn't forthcoming. It wasn't from the lack of phoning and contacting them that it took so long but rather a stubborn reluctance for some reason to provide anything in writing to me. Several months of fighting for the information and a stand off in the GPs reception taking witnesses details and copies of correspondence between CAPS (Child & Adolescent Psychiatry Services) and our GP were furnished to shut me up. It takes a lot for me to "lose it" but after being lied to and told that letters had been sent to me which obviously hadn't, I arrived in person to get copies of the letters from CAPS. After they looked in the file, it was apparent that the letters didn't actually exist! To gain access to the files myself, I would have to apply under the Freedom of Information Act and pay for the privilege. Hence the drive to the GPs surgery and my demands that they furnish me with what they had on file and the subsequent standoff! It was a revelation to read that back in Feb 09 they queried atypical autism and ocd to be further assessed but then sat back and did nothing, happy to leave her on medication and take it no further. I now understood why they were so reluctant to let me have the correspondence! I would have taken her for assessment privately a lot sooner had they not sat on this information. They did however, at every meeting we had, raise the subject of AS so I eventually took the bull by the horns and had her assessed myself...

After thorough assessment back in February, we finally got answers to Yanis behaviour and issues. A full Occupational Assessment showed that she has SPD (Sensory Processing Disorder) which when explained to us made so much sense as to why she would be oversensitive to some visual and auditory stimuli. It made sense now why she got so upset if The Elder Lemon would forget to take his ADHD meds and be tapping and clicking and unable to prevent himself doing so... So now I have one who moves and taps uncontrollably at times, and one that cannot tolerate the sound or sight of him doing so... ummm interesting times lol. Certain sounds such as eating noises would be so distressing and distracting for Yani over the years meant that we no longer eat as a family as it really wasn't worth the tears and tantrums that ensued. We used to joke that she would never find someone to marry when shes older as even the sounds of people breathing bother her at times! (This one I can relate to... I could never sleep facing my ex as I would be tempted to put a pillow over his face if he breathed on me hehe) Anyway before I digress, this was one issue that was highlighted and made sense to us. It was also brought to our attention that she has some gross motor difficulties and needs OT to deal with that. I better not joke that she runs like Borat any longer...





With regard to Aspergers Syndrome, the psych assessment showed that she had some features of AS but not enough to warrant a diagnosis so we can put that behind us now and stop wondering if that was a possibility. I now had something to bring back to the team in at CAPS when we met. They had pulled out the big guns and I was now to meet with the head psychiatrist for the South East region. Apologies were issued and verbal admissions made that she should have not been left that long without further investigation. We had another very lengthy meeting where the top man himself spent time with Yani and came back to me with the diagnosis of ADHD Inattentive Type also known as ADD. Some of her symptoms of ADD may be related to her SPD and lethargy but you don't get resource hours in school for SPD so an official diagnosis is being made and letters written for the school so that Yani may get resource for the senior cycle. Meds are also being discussed and will be started during the summer. He also has referred Yani for a full speech and language assessment as feels that she may have a pragmatic language disorder so that requires further investigation. I finally have the HSE sitting up and paying attention that we will fight hard to get what services she needs to make the most of the rest of her schooling. Its just a shame we've had to fight this hard!

So I have that part of the battle sorted.. I thought that I had all the fights done for the coming school year for both Yani and Munchkin, but of course life isn't like that when you've got a SENO that used to steal the jumpers from the makeshift goalposts as a child, but that's another blog post...

Jump? Sure... How High?

Gosh its been a while since I blogged last... I've been busy training for the circus you see. Laugh as you might, I think I may have qualified as an acrobat since we last met... And who has taught me such a skill? Well I'm learning this art courtesy of our very own health service providers, the HSE and the Department of Education and Science have thrown in a few lessons along the way. They are equal opportunity trainers, but if I'm honest, I think they favour our group at times as seem to focus on training us at every opportunity...

I first started jumping through hoops before I even met "The Professionals" at the HSE and the DOES, but the hoops I thought were difficult to navigate and jump through were only training hoops. A straight run and with a little effort you jumped right through. Inconvenient but not unsurpassable. Since those days though, the HSE and DOES have introduced me to a whole new level of hoops and obstacles to navigate on my path to get my children the services they need and are actually entitled to! When you have filled in the gazillionth form, and bought your own photocopier as have that many forms/reports/letters to post out what seems like on a weekly basis, and think you have things under control, another hoop appears...



Unfortunately, like circus lions, I have discovered that if I want to get to where I need to go, I need to play the game and when the Ringmaster says "jump" its better to ask "how high" than resist. As a wise woman once said, you catch more flies with honey than vinegar. She also told me that the "squeaky wheel is the one that gets oiled." When you are tired doing mental acrobatics, sometimes you need to step back, gather your energy along with your thoughts, and when you are ready, take another bash at it.

Whether is a refused DCA application and appeal, a request for reports, applying for Home Tuition, an SNA review or the fight for Speech and Language Therapy, or Occupational Therapy, you need to find the best way to approach the hoop to make it through. Sometimes you will need the support of others to help you along and give you a "boost up" when you feel you have no energy left to jump. Others who have navigated the course can be valuable allies as even thought the route may change from time to time, they will have information and advice how to handle your particular situation.

I think what I'm trying to say is "don't give up". The reason these hoops and obstacles are placed in our way is, in my opinion, to make it more difficult for parents in the hope that some will not pursue it further. A shameful way for the Government to save money at the expense of our children. What they don't bank on is us all coming together and in a show of strength helping each other navigate. When your child is diagnosed, you are not given information on what your entitlements are or what you can apply for. If you know any parent in this situation, please tell them, show them and guide them towards the information they need.




Right I'm off to sew some ostrich plumes to a leotard and post my CV to Duffys Circus...