Tuesday, June 30, 2009

Trying the diet..



The following weeks passed by in a haze. Armed with flashcards, reinforcers and a cup of strong coffee every morning, we would get the day started. I had to learn to break my speech back down to single words again and go right back to basics. I used Munchkins interest in books to my advantage but she was no longer allowed to browse them by herself, she had to allow me to participate. Quite quickly, I realised she couldn't (or wouldn't) point. I worked for months and months using hand over hand to teach her how to do this. To this day, she will still point with her thumb instead of forefinger if she's tired. She loved to stack blocks so this was another strong reinforcer and had a love of stones so gathered a small bucketful to use too.

I decided to take her off all gluten and dairy as had heard a lot of parents had good results with this and I was astonished how quickly she responded to the diet. It was as if the fog was lifting and she was suddenly interested in her surroundings. Her eye contact improved dramatically and she started sleeping at night! She had been a three times a night waker up to this point. I wasn't surprised when her blood tests showed strong intollerance to dairy, soya, wheat and eggs, but was astounded that she was also intollerant to pears, apples, beans and peas! These were things I would never have thought of removing from her diet. I'm not Jenny McCarthy and I'm not saying that all children on the spectrum will improve using dietary restrictions but do believe that if your child has food intollerances and you have blood tests to confirm this, then yes, there can be significant improvements in behaviour, attention, eye contact etc... It must be stated it is not a cure but worth investigating. If your child has no IGg antibodies, it would probably be pointless restricting their diet as you most likely won't get the gains I've mentioned (In my opinion, I don't have a medical degree!)

Munchkin had a lot of sensory problems at this time too and I spent a lot of time on desensitising her while using her strongest reinforcer (Elmo). If she wanted to watch the furry little monster sing and dance on screen, she had to let me rub her feet or touch her hands. She had particularly adversive reactions to having her hands touched and if she wanted to push you away, she would always use the back of her wrist and never her fingers. She used to sleep in my bed and I would have to lay my arm across her chest (not my hand, only my forearm) and she took comfort from the pressure. I implemented a home made OT program which involved a lot of deep pressure and squashing using cushions. She needed this rough and tumble every hour or so or would become distracted and whingy. She loved to be wrapped tight in a duvet and swung or squashed. You had to squash for only a second though and release quickly and it took time to figure out what her limits were as she hated being restricted and still does.

I also bombarded her with social interaction.... but thats another blog post!

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Tuesday, June 23, 2009

Getting up and getting started...















Pulling yourself together is easier when you have three children depending on you to get up and act as if everything is going to be ok. Even though every morning the "Autism Express" chugs through your brain, (you know the one girls... the sound of a train going chug-a-chug-a only its the single thought "autism-autism-autism-autism"...), you get out of bed and drag yourself down to perform the perfunctory duties. Nappy change, bottle, drive the kids to the school bus and back home to sit and be alone with my thoughts. After a while, I decided that I needed a plan. So I sat and worked out what I needed to do. Autism had my daughter but I wanted her back!

I emailed the family I worked with to ask their advice. I got a phone call from Australia that very night giving me the much needed support that would put me on the road to early intervention. As I said in my first post, I don't know what led me to work with my little friend but now I was equipped to help my little girl. I had received an appointment to see the paediatrician but it was going to be another two months before she was seen. I didn't want to wait any longer and see her regress further into herself so it was time to take matters into my own hands. I had the tools and knowledge just needed to put them in place. Suddenly, I didn't feel so useless.

My tutor friend dropped me over all the old notes from our courses so I could brush up and get back in the saddle so to speak. I poured over every note and made a list of reinforcers I could use. I was lucky as Munchkin did have some toys she liked and tv shows (Maisy Mouse and Elmo) so wasn't relying on food reinforcers of which she had none. And so we started ABA.

Sunday, June 21, 2009

5 mins, €55 euro and a prescription later...

Escitalopram 10mg Tablets (Lexapro brand)Image via Wikipedia















I made an appointment to see my GP as soon as I was able to and waited anxiously to see her. After an hour of fidgeting in the waiting room, it was my turn to have 5 minutes of her time for €55 euro. I sat in the chair and let Munchkin loose while I talked to the GP. I explained my fears to her and was astonished how she fobbed me off with the "she's still young... wait and see.... she looks ok to me..." lines. She had letters after her name so obviously the 5 mins she saw the Munchkin made her far more qualified to fob me off... However, I have letters after my name too.... M.O.M. and insisted she refer us back to the paediatrician who had seen us while in the hospital after Munchkins seizures. She agreed and then wrote me a script for antidepressants and valium. I left the surgery feeling as if I had been told I had Munchausens! To this day, any time we have been in her surgery, she still tries to "test" Munchkin by calling her name or asking her something. Of course, my little angel never answers her questions.

What makes me smile looking back is that as I was so unable to function normally at that time, while I was talking the Munchkin absolutely trashed the place and scattered every leaflet and booklet off the shelves. Normally I would stop her...
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Saturday, June 20, 2009

Becoming acquainted with the kitchen lino....


After Christmas, when we had settled back into our usual day to day routine of school bus runs, homework, cooking, cleaning, working etc.... the seeds of fear started growing in my belly. Every so often, I would look at my gorgeous little girl and start to wonder, then rapidly push that unwanted thought to the back of my mind :( How could I even think that there might be something wrong, so I would stick my head back in the sand and carry on blindly in the hope that all would be ok...

Seeds of fear are like weeds though, even if you give them no attention whatsoever, they carry on growing until you are no longer able to ignore them. I started looking at what the Munchkin was doing, stacking cans, blocks, collecting pebbles and stones, lining things up, flapping, humping, obsessively looking at telly, resisiting touch and cuddles, bad sleeper, terrible eater.... yet she could suddenly look at you and melt your heart with a smile... She only liked to sit on you if she was having her bottle, facing out from you with her back to you and the second the bottle was finished she was off!

She was no longer using names at all and would count to ten over and over when excited. It was confusing as I could hear her talk when she was counting and she could hum the tune of Twinkle Twinkle Little Star pitch perfect.... When I looked at our so called communication it suddenly clicked with me that I was running a dialogue of what she was doing, following her lead and it certainly wasn't her following my instructions etc... I started to palpitate with the mere thought of "Heuston... we have a problem"...

I finally felt able and ready to ask "the question" of my friends, some of whom are ABA tutors and have worked with children on the spectrum, and also contacted the family I had worked with who we had seen over the Christmas period when they returned to Ireland for a visit. The question? "Do you think that Munchkin might have a problem.... do you think she might have autism"..... I already knew the answer I would get but it still hit me like a steam train when one by one every single person said, "well yes, I think theres a problem there" My head started to close in on me and panic ensued.

I sat on the sofa in my kitchen and looked at my little girl, standing with her back to me and started calling her name, over and over and over.... Of course there was absolutely no response! Then I started shouting it.... then singing it.... then whispering it.... No resonse, not even a flicker. I fell to the kitchen floor and the most enormous wracking sobs shook my entire body as the last penny dropped. OH MY GOD.... MY BABY HAS AUTISM!!!! I spent hours crying and howling on the kitchen lino and Munchkin just stepped over me and carried on. I begged her for a hug, I pleaded with her for just a touch but of course she wasn't interested in the fact Mommy was having a nervous breakdown on the floor. I spent a good portion of the next week becoming acquainted with every inch of the kitchen lino as I seemed unable to function. This was rock bottom. Even writing about it now is evoking horrible memories of this time and tears are streaming down my face. It amazes me how far my baby has come in this short time and I look forward to telling you about the better times from now on...

Friday, June 19, 2009

Christmas 2007

Cover of "Adventures of Elmo in Grouchlan...Cover of Adventures of Elmo in Grouchland


Six weeks after the Munchkin had been in hospital, we went to my parents for Christmas as usual. Every year, we would descend upon my family home to devour my mothers delicious roast turkey dinner with all the trimmings. We would have a house full with my sisters, brother, aunt, uncle and neice there along with me and my brood.

I hadn't really noticed Munchkin regressing as had been preoccupied with life, teenagers, and had put everything down to her being ill. I had checked off the boxes in my head of the things she had acquired and then filed them under "completed" in my mental filing cabinet. I didn't notice that she was no longer doing things that she had done previously...

My biggest memory of that Christmas was that Munchkin was very disinterested in the hustle and bustle around her and was quite upset. All she wanted to do was to sit in her booster seat watching Elmo in Grouchland over and over.... If people started talking in the room, she would put her hands over her ears to block them out and concentrate on Elmo, Huxley and the rest of the characters... I heard and saw this movie so much I know every word of the script! We all sat eating dinner, laughing and chatting and she sat glued to that little red monster oblivious of everything going on around her!




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Wednesday, June 17, 2009

What happens when you are not paying attention...


I feel I was distracted by the Elder Lemons problems so had decided to completely ignore all the redflags that were being swung aroud me. Life carried on as normal and I even told myself that I had imagined all probs with Munchkin. Sure, wasn't she making babbling noises, she had just started to walk, why worry about the other quirky stuff. I went into denial for a short while until one fateful morning in early November 2007. I had had another sleepless night with Munchkin (sleep was a big big big prob in the house!) I woke up with the vomiting bug and physically couldn't take care of Munchkin so I asked the my teenage daughter Yani to mind her so I could lie down upstairs. 5 mins later I heard the screams from the kitchen... I ran downstairs to see what was wrong.... Charlie appeared to be choking in her highchair. I whipped her out and turned her over and checked her airways, nothing visable lodged. I repeated the baby heimlich while Yani phoned for an ambulance and we were told that it'd take 45 mins for the Ambulance to pick us up so we said feck it anyway and I drove my precious cargo to a&e. At this stage she was breathing again but unresponsive and sleeping..

All the time we were on gurneys at the hospital, I had the indignity of vomiting into the tinyest kidney bowls known to man! It was ascertained that she hadn't choked but had had a seizure. They decided to admit us as they couldnt' figure out why Munchin had had the seizure...That afternoon, just after feeding her, the nurse suddently stopped and pointed. Munchkin had keeled over on the bed and was in a grand mal seizure! Temps were taken and nothing abnormal there. It baffled us so lots of blood and other samples were taken for analysis and other tests.

She recovered nicely in hospital but did subject us to "Elmo in Grouchland" over and over and over..... We left hospital and we never ever got a conclusive or satisfactory answer as to why this happened!

Teenage Intermission...


I must admit, this one came totally out of the blue for me! My handsome, intellegent, sweet, popular, gentle and kind "Straight A Student" totally derailed..... I was heartbroken but determined to help sort out what was happening to him. I was put on the swift upward learing curve of self harming, abusing alcohol and occasionlly indulging in the wacky bakkie to mention a few! I felt I had lost my Elder Lemon somewhere along the way when I blinked for a nanosecond. I spent months crying in bed worrying about how to help him as I couldn't just stand back and hope for the best! This is when we became aquainted with Child and Adoloscent Psychiatry Services who I must say are fab and very helpful (just a shame theres are stupidly long waiting lists to access them!)

After several visits and evaluations Elder Lemon was diagnosed with ADHD!! You could have knocked me over with a feather as had not seen that coming! In hindsight, it did explain a lot of things that he had done but I still had not expected that as in my limited experience thought that ADHD kids were disruptive in class, getting into trouble a lot and that didn't sound like my Elder Lemon.... Once again, I was wrong lol. A lot of his ditsyness could fit in with what they were saying... the incessent tapping and clicking, his total overwhelming energy... I would have accepted the diagnosis earlier. It didn't help that he has a photographic memory and a very high IQ which apparentely makes the diagnosis harder as he was coasting school.

We went to assessments and reviews every few weeks and they recommended Concerta to start. Wow the difference was amazing and I started relaxing about Elder Lemon :)

Munchkin turns one!






R and I separated just before Munchkins first birthday and he was staying with friends til he sorted out accommodation so things were a little strained to say the least. I got a cake and we gave presents to her when R came down to see her that day. I recall thinking it odd that Munchkin didn't dive into her chocolate cake with gusto the way the older two had at that age but rather picked cautiously at it... It niggled in my brain for a nanosecond then was pushed back to the dark recesses of my mind to be considered at a later date when I felt ready. The recesses were at this stage crammed with all the points and signs I had noticed but felt ill equiped to deal with at that time. Was far easier to grab a spade, dig a hole in the sand then stick my head in it for a time. At this age she was already showing red flags for autism, for example, she couldn't say Mama or Dada or any name for that matter yet could count to ten!, she had no functional form of communication per se as would not point at any item she may have wanted... she had no way of letting us know her needs and wants. She didn't put her arms up to be lifted and resisted being held chest to chest. She flapped a little and liked to stack blocks. At this stage, crying and tantruming was her most effective form of communication as quite often her grandparents would intervene and give their well meant advice which quite often ends up making the situation worse... I knew that the stuff I had mentally logged was going to have to be acknowledged sooner rather than later!

Tuesday, June 16, 2009

Our first holiday :)




When Munchkin was 11 months old, we decided to take a "make or break" holiday. Relations between myself and R had gone steadily downhill and we had attended councilling. We had severe communication difficulties and with a young baby and two teenagers in the house, we were rapidly heading for rock bottom. This was it... time to pee in the pot or get off. Bags were packed and we jetted off to Turkey...

Munchkin as you can see from the pics had a lovely holiday but unfortunately it was to be the last we would spend as a family...

The early days...

After our scare things settled into a day to day routine. Occasionally, autism would pop into my mind and as early as 3 months would often comment that Munchkin wouldn't give eye contact. You could hold her in front of your face and she would look at your ear or the picture behind you regardless of how much you turned her towards you... Just as you thought she wouldn't look you in the eye, she would turn and look and you were ok again...

She was never a great feeder, and I put that down to the fact she had a slight tongue tie and I had to stop feeding after a couple of days and put her on formula. We then had a three week period of colic, reflux, sleeplessness, crying etc... I decided after trying every colic remedy known to mankind that I'd have to relactate (not an easy feat!) and try to feed her myself again. It cured the "colic" but we had a weird feeding system going as she hated the tummy to tummy feeding and after a while, would only feed if I lay on my side on the bed with her propped on pillows and I wasnt touching her. I had no idea of her sensory probs at this time just accepted that this was the way we had to feed. When I went back to work I got a friend to mind her and will never forget that she had to "drip feed" the milk to her...

She was developing on a par with all the other babies that were born to mums I met when I was pregnant so started to relax as I marked off things on my mental list....

eye contact (intermittant)... check
babbling (on reflection not great)... check
physical development... check

I was relieved as thought we were in the clear....

The Munchkin has landed...


September 2006 arrived and every day seemed an eternity. Mid September, after a chocolate muffin and a cappicino to commiserate another day passing with no sign of madam making an appearance, I had my first contraction while browsing a local department store. My friend drove me home like a bat out of hell despite my insistance it would be hours before anything real happened... I was wrong! I barely made it to the hospital and the Munchkin landed 9 minutes after being admitted! All 9lb 4oz of her was in a very big hurry to make her stage debut and this left me in shock for a few days!

We went home 12 hours later and attempted to adjust to dressing, feeding and taking care of this tiny vulnerable person who was now controlling our home with her demands and needs. Autism was not at the front of my mind in these early days as we now had another worry. Munchkin had been born with a dimple in her spine. We didn't know how deep it went as couldn't see and there was a small amount of hair growing from it. I crumbled inside thinking the worst and instantly mentally tarmaced the driveway for her wheelchair being the big pessamist! It was also noted that she had an "ear pit" which was also a neural tube defect so we went through a series of Xrays for her spine, Ultrasounds for her kidneys to see were there any missing or anything abnormal about them, hearing tests etc.... I remember standing at the hospital asking the consultant before these tests what the dimple and pit could represent and barely hearing what his answer was as the room was spinning with the words... spina bifida... kidney and renal abnormalities... deafness... I recall asking the doctor afterwards could he not have "sugar coated" it a bit for me as I was hanging on by a fine thread. Thankfully all that stress and worry was for nothing as it turned out the dimple didn't reach the spine and it hasn't effected her mobility at all (as you will see later on in the blog, I have a mountaineer lol). Her hearing was fine and her kidneys normal so we were able to put this behind us.

The first seeds of fear....

It was now July 2006 and was a hot and humid summer. Pregnancy had gone well so far apart from a bleed early on and everything was going to plan. We had found out we were having a little girl and my husband and two children from my first marriage were all looking forward to meeting the Munchkin in September! My inlaws lived in the UK so we travelled over when I was 32 weeks pregnant to see them.

***** section removed by request *******

(Certain events that happened while we were there made me start to question if my husband was on the spectrum)

I took refuge in the bedroom and cried cradling my bump and praying I was wrong. I was suddenly scared for my unborn baby too. All of a sudden, all my husbands quirks and ways screamed aspergers at me. We had joked in the past that he was on the spectrum but now it didn't seem so funny anymore...

In the beginning....


When I decided to blog I wondered where could I even start and decided the beginnning was the most logical place to start.. I think back to the years before the Munchkin came into our lives and wonder what guided me to leave my office job of 12 years and get out of the "Big Smoke". I packed up my life and headed off into the hills with all my worldly possessions, my two children, one cat and one dog...

We landed and settled in our new home and the kids were making friends and happy in their new school. Everything was peachy bar one thing... a job. I trawled the papers and went to numerous interview to no avail. One day, while searching the job listings, I spotted a small ad looking for "An energetic and kind person required to play with 4 year old autistic boy". I'm not sure what kept drawing me back to this ad but I eventually rang the number and spoke to the parents who arranged for me to come over for a chat. I worked and fell in love with this little boy for the next two years. His parents sent me on ABA/VB courses and every other course that was available in Ireland and I was embraced as part of their family. It was heartbreaking when they left Ireland and I still miss my little friend to this day. I decided when he left not to take on another teaching post as had just remarried and was now expecting a baby. Exciting times..... Life was good and the future looked bright.

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