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...

Well... are you happy now??

In early July 2008, we got called for a full developmental assessment by the Area Medical Officer (AMO). It was an extensive assessment which covered all her physical, emotional and intellectual milestones. The AMO also completed the MCHAT autism assessment on Munchkin and went through the results there and then with me. As we had already had the SLT and OT assessments completed the results concurred with the results that day. During our discussion, the AMO informed me that there was no facility for her to record her observations that day, but rather the forms were a scale and she could only mark and score per se. She actually pointed out to me that as Munchkin had echolalia, she would have to mark that she heard her "talk" and that she had language. I was strongly assured though at this time that her SLT assessment would be showing up her deficit in communication even though she didn't have the opportunity to record her social and communication deficit (beggars belief how the autism scoring MCHAT can leave no room for comment!)

In September, just days prior to Munchkins second birthday, I managed to secure an appointment with "The Professor". Munchkins Dad insisted that he be present for this assessment, and for a time I was reluctant for him to attend. I thought long and hard about it as he was so much in denial then that there was any problem to address, but permitted it as for one, he is her father, and I also thought it may be useful for the professor to meet him! We headed for Dublin on the appointed day, nervous and unsure of what to expect. In my heart, I knew what the outcome would be, but part of me craved and begged to be told I was paranoid, that there was nothing amiss and Munchkin was fine!

We arrived early and sat outside the house, silent. We decided to head to a nearby pub for a cup of coffee while we waited. The silence between us was formidable and I spent the time picking the cuticles on my fingers as the nerves were setting in. When it was almost time, we headed back up to meet the Prof...

As we were ushered into the office, it struck me how child unfriendly this situation was. His office was wall to wall paperwork and books and there were obvious Munchkin attractions everywhere! Instantly, I felt as if the good professor was indeed an expert in this field as he knew it from the inside out so to speak. There was limited eye contact, lack of social graces and a certain brusqueness to our meeting. During the initial few minutes of our conversation, while I was opening up to my innermost fears, I was handed a piece of paper.... I quizzically looked at him and was told "my bill"....

We did a detailed history of both myself and Munchkins dads history which turned up quite a few surprises for me from his side... Then it turned to Munchkins developmental history. He was very in depth with his questions and I answered them to the best of my ability. All the time, Munchkin was lining up stones on the chair, sticking stickers from a magazine I bought her in categories, flapping a little, ignoring anything that was asked of her... but the most memorable thing for me was watching the professor look at my ex as when he's stressed, he sticks his hands in his pockets, but the rest of his arms flap... his mother once told me he's always "flapped like a little chicken". He also explained that he thinks in hexadecimal and other gems.. I also had to admit to such things as I can't stand ticking clocks... won't walk on grass in bare feet.... hate sand... and other such intolerance's....

At the end of our hour with him, he had diagnosed Munchkin on her 18 month review as regressive autistic. He said though that she was in his opinion at this time Aspergers Syndrome. He stated that her mind was extremely logical from what had been observed of her in his office and how mechanical her thinking was (this was from watching her work out his window locks and try each of the keys from his bunch in the locks....) The hours of work that had been done with her over the preceding months, and her reaction to the exclusion diet had been astounding to which he said we were extremely lucky to have intervened so early. The report he was to give us however, would state Autism Spectrum Disorder DSM-IV Regressive Type to gain maximum resources as at her 18 month markers, this would have been his diagnosis after her regression from the seizures. I walked out of that meeting, not shocked, but still feeling like the rug had been pulled from under my feet..

We strapped Munchkin into her car seat and both me and her Dad sat silently in the front of the car doing nothing. For what seemed an eternity there was nothing... not even a sound from the back of the car.. then the words.... "Are you happy now??" Happy???? How in the name of God would he ever think I was happy?? Upset? Confused? Frustrated? Bewildered? Angry? even relieved? yeah.. all of them! But happy?? It was not a case of "nah nah I told you so", but it meant we could move on from here and do what was needed for our little girl and not keep this "is she/isn't she" farce going. The moment I so needed a hug and reassurance, I was getting this mental kicking instead. I wanted to text my close friends and family to say we had got our diagnosis but there was something stopping me. I couldn't write it down or say it as that would make it real somehow. If I could just delay that moment for a while longer I would as saying the words made it real somehow. I thought I couldn't feel any worse but I was wrong :(

It's only looking back now that I realise how difficult times were back then. My life seems so different now and so much richer. I have met some incredible people through my journey and they all have different stories to tell and routes they have taken. I am humbled by their strength and their humility and am blessed to know them. You know who you are :)

Assessments, assessments, assessments...

I ripped the plastic off a folder and thought to myself do I really need one? I stuck in the few appointments and the blood test results and a couple of hundred empty plastic pockets. Labelled a few file dividers with various assessments I knew would happen under the Assessment of Need and stuck it up on a shelf. I really didn't think that less than a year later that folder would be full and I'd be looking for a bigger one!

Munchkins first assessment was her speech and language assessment. We went in not knowing what to expect. The assessment was extremely thorough and even though Munchkin now could say some words and had a small amount of language, she fell very behind in the tests. Her receptive and cognitive was atrocious. She had some echolalia and could label about 10 items from cards at this point. The SLT said that she needed blocks of therapy and would do right into adolescence. Words like pragmatic language therapy and Floortime and Earlybird were floating around the room. I was given a list of targets to put into her program and sent on my merry way with application forms for Earlybird.. I still a year later haven't heard back from the therapists who run Earlybird as they have been on maternity leave and once again the HSE didn't apply cover for them... I often wonder where Munchkin would be now if I hadn't been trained as a tutor and think often about parents who are left in this limbo.

Second to come was the occupational therapy assessment. It was ascertained that her gross and fine motor skills were excellent but her sensory problems were causing her a lot of trouble. As I talked with the occupational therapist, Munchkin colour coded all the pegs on the board with all the green together, all the red, all the blue and so on. When we looked at what she was doing, we both actually laughed out loud. The OT armed me with lots of exercises to do with Munchkin but warned me that she wasn't allowed to "give me a program" but not to worry, her report for the assessment of need would be so detailed, I would be able to extract a program myself. She put Munchkin on the waiting list for OT but warned it would be at least two years til she'd be seen again! As the assessment of need still hasn't been completed, I don't' have access to the report so have had to rely on what I remembered from the assessment and get ideas from other autie moms and dads (where would we be without each other!)

Next assessment was the feeding assessment where it was decided that her feeding problems were all sensory and not behavioural. Once again I was given some ideas to try with her but little else. To this day, feeding is still a major stumbling block with her and she still cannot drink out of an open cup. OT apparently will help but when?? I was given details of chewy tubes, electric toothbrushes and a list of websites to look at for oral sensory equipment. We still have problems with "sticky" foods and foods that require chewing but we plod on...

The psychology assessment still hadn't happened by the August so it was time to get the money together to go privately.....

Being taken seriously

By the May, my life resembled a good Western movie set. On the outside, everything looked ok and stable but if you went behind the scenes, you saw that the set was held up by strategically placed props... remove one of these and the whole lot would come tumbling back down again! My props were my family and friends who gave me emotional support and a shoulder to cry on when thing were getting too much for me. I'm sure they must have been fed up at time with my preoccupation with autism and all things autism related but never once waivered... always there was an ear to listen, a hug to help when words are not enough and support to keep going. On the other hand there was also denial from Munchkins dad and his family who didn't want to believe there was anything wrong. Hammie from Hammiesblog wrote a wonderful piece called "D is for Denial" which helped me understand to a degree their reluctance to accept what to me was obvious...





The appointment day with the paediatrician at hospital finally arrived and I bundled Munchkin into her buggy and sat in the waiting room. When we were called in, I was greeted by not only the paediatrician, but a team of medics. We sat and discussed my fears and observations while Munchkin strained to be released from the buggy, whining and crying. I was asked to ask her questions such as "what do you want", "do you want to get out", "whats the matter" "Up?" with no physical prompts whatsoever. I did so and Munchkin just carried on whining and straining at the straps. They then asked me to do what I would normally do at times like this and so I put my arms out and gestured "up" and she stopped crying so I could unstrap her. They repeated several tests like that and she only responded to the physical prompts. She climbed across doctors to get to things she wanted and had no stranger fear whatsoever! After about 45 mins, the paediatrician concurred with me that there was cause for concern and wrote down the details for Assessment of Need and urged me to apply to get started with that. She also referred Munchkin to the AMO (Area Medical Officer) to have a full developmental assessment and the MCHAT scored... Finally I felt as if someone was listening! I went home with my bundle of information and numbers and set about ringing and writing letters thinking we would be able to get moving properly. Little did I know that over a year later I would still be trying to get the Assessment of Needs service statement finished...

Bombardment of Social Interaction....

Today, I visited a play school that had been recommended to me to have a look and see if it would suit Munchkins needs. I had thought that I would hold off with playschool til the following September as she will have 20 hours HT a week in September to fit in too. It wasn't until I looked back over the last 18 months and seen how far she has come socially that I reasoned it would be unfair not to allow her to have at least one session a week there. I dropped over unannounced to the playschool to discuss placement with them and found a group of very happy, bouncy giddy and compliant kiddies there cooking their fairy cakes and generally having lots of fun. I instantly got a good feeling which grew stronger as I was given the guided tour. There is a main room with all the arts and crafts, puzzles, tables and chairs and table top work. In this room is also the kitchenette with stairgate to block entry. Then I was shown their imaginative play room which was fabulous! There was a toy shop built in and a stage and a castle and plenty of dress up toys and accessories. The third room caught my attention instantly as was the quiet circle time room which also had beanbags and books in it. When I mentioned that Munchkin would sometimes need a quiet place they said that this would be ideal for her. Everything was so geared towards keeping the children safe, happy and occupied. I loved the idea of a structured environment for her to learn in too. They are aware of her aspergers and said that they are only sanctioned to enrol one special needs child per year! Well Munchkins place is now set in stone! I liked their ethos that if a child has a challenging behaviour, that the child is not named bold or labelled in any way. They offer a positive reinforcement policy with all the children.

"Behaviour is not 'naughty' just because it does not conform to adults standards of behaviour. Children need to learn which behaviour is acceptable, and which is unacceptable"

Thinking back to the early days, if you had told me I'd be excited at the prospect of my daughter going to playschool I'd probably have just shrugged. Back then, I was only at the beginnings of our social bombardment. I had been blessed that I made friends with two pregnant moms at my antenatal classes and our babies were born a few weeks apart. We had kept contact and so plan A could be put into operation. I organised a lunchdate for the mums and playdate for the kids in my house the first day. We all ate and chatted but I watched the social interaction (or lack thereof) that was going on between the children. This weekly lunch date became a regular fix in our social calendar and before too long, other mums joined in and our social group grew. Munchkin coped fine with the other kiddies coming in around her but she would be so quiet while the other kids ran around playing etc. I was also bringing Munchkin to a local mother and toddler group on a Thursday and would sit back observing all the other toddlers running around, playing, coming and showing their mums toys etc. Everyone would comment on how good Munchkin was, and "doesn't she play happily by herself" etc... I would look over and see my baby repetitively flicking a lock on a cupboard or emptying the water filter.... after a few months of this I left one day in floods of tears as the "gap" in the social development was widening and my heart ached for my little girl. I gave myself a break from this torture for a while and concentrated on the social lunch/play dates that were working well. That was one day a week, so for the other 6 I would endeavour to have one of the kids over on their own, or we would go to their house for a short playdate. This worked fabulously as she was able to learn one on one with her peers, but also had the social group too :) Her imaginative play was starting to grow and watching the others with the toys definitely helped kickstart that. These days, her imagination astounds most people around her as she definitely "sees things" in other objects etc. I was given help getting her to show me a toy using hand over hand and it didn't take her long to learn.... now I'm shown everything she has hehee. She definitely forged friendships with her little playmates and they loved her too :)



She also spent a lot of time in the beginning up in Dublin one day a week to see her cousin R, and I believe it is with R she developed her first actual bond. They still adore each other when they see each other.

These days, she will happily go into the creche in Dundrum Town Centre and not look for me at all :) Having seen this progress, I made the decision that she needed playschool at least one morning a week so am delighted to have found such a good one that is able to cater for her needs.

It's ok to be different....

My sister sent me these images today and I got a lump in my throat. Why? Because to me they symbolise everything I believe about our children. It is ok to be different. Does it make you any less beautiful? Absolutely not. It is far too easy to focus on what we believe to be wrong or missing with our children and miss the little things that make them uniquely wonderful. If you were to look at this peacock, would you see an albino bird and criticise its missing pigmentation, or would you look and find it breathtakingly beautiful....

I was advised in the early days to please please not spend every second analysing my little girl, not to lose sight of her little soul and to enjoy her. Great advice but as many others have found, very difficult to do in practice. It is something I advise people to do now though too. My daughter may be on the spectrum, but she is an amazing, funny, happy little girl with a laugh that is infectious. Her quirks are part of her personality and without them, she'd just be a bog standard multicoloured run of the mill peacock...