What's Sleep Got To Do With It??

"When I was a child I used to hate going to bed... Now I cherish every hour of sleep!"

I saw this posted up on Facebook earlier and I couldn't help but physically nod in agreement as I read it.  Sleep... its something we all need in order to survive and keep our mental faculties intact.  Unfortunately Munchkin doesn't realise that!  She's never been a great sleeper from the start, often waking three or four times a night and ending up in bed beside me, as it would be the only way I could get one eye shut if not two.  In the early days, while she was still a baby, I accepted that there would be some degree of sleep deprivation involved as with all babies... (you can spot a sleep deprived mother a mile off, with the telltale black bags, and I'm not talking Prada dahling!) Thats what babies do... they eat, poop, sleep and cry and repeat this cycle over and over.  Usually though, sometime midway throughout their first year of life, they will eventually settle into a sleep pattern, waking less and ending up sleeping their 12-13 hours straight through to morning by about a year...

Unfortunately, with Munchkin, and with many other children I know on the spectrum, sleep deprivation is more common than sleep.  For some reason, our kiddies need so much less sleep than other kids their age.  I occasionally get lulled into a false sense of security when my pixie decides to toe the line and give me a night or two in a row, making me believe that perhaps the torture of the night time waking is actually ending.... But no!  Bam, we're back at square one :(  I do hold onto some hope though... Her older sister woke every night until she was over 4 so maybe, just maybe....

The effects of this broken sleep don't appear evident in Munchkin, who can happily run around, and laugh and smile etc as if she's had a 12 hour marathon kip.  Nothing seems to knock her off kilter.  She does her puzzles, plays with the toys, does her tablework without fuss and stays in relatively good form during her sessions in school and with tutors.  So why is there a problem I hear you ask....

I guess the problem lies with me...  I struggle to function to the best of my abilities when I'm tired.  Standards slip when it comes to everything as I wouldn't necessarily have the energy to give things my best focus.  Just the other day, after a 5am rising with madam, I had to go to work which I found very stressful as the child I work with was extremely frustrated with not being mobile, so took it out on my hands using her nails.  I then had to go collect Munchkin from school and go to the local book shop to get some stationary and books that Yani needed for school.  We went up to the top floor to buy the books and then came downstairs to look at the puzzles for madam.  Being tired, I looked at a box and when I looked down... she was gone!  Oh no, where is she... theres a door that opens out onto the street... panic.... I start shouting her name over and over hoping she's going to answer me.  Next thing, a counter staff girl shouted over "I think she just went up in the lift"!  Great!!  I run up the stairs and find her on the upper level.  I got angry, really angry...  Not with her, but with myself for letting my guard down and letting her give me the slip!  Even if I'm exhausted, I cannot let the guard down!

Time for action... I can no longer function as a law abiding, kind, happy, intellegent, useful member of society without my 8 hours a night. I have discovered the frightening "Sleep Deprived Driving" which means I can be often seen having a catnap at the side of the road when can drive no further... When I was younger, they used to joke that if sleeping was an Olympic Event, I'd bring the gold home for Ireland every time.  I LOVED my sleep.I had it down to a fine art, and could sleep standing upright on the 75 bus to work every morning.  Gawd, I miss those days!  So whats my plan of action....

I have in my possession now, the holy scroll (well GMS prescription for Melatonin liquid)  I have previously bought Melatonin over the internet and given it in small doses but that obviously didn't have the desired effect.  The paediatrician gave me clear instructions and the dose she recommended is far greater that the amount I had been giving her.  So fingers crossed everyone... If it does the job you will probably hear the squeals of delight coming from me in the morning :)

Watch this space.... but if you hear snoring, wake me at your own peril hehe...

Tayto Louboutins... Imagine That!

Imagination... its something that has been said is lacking in our children but is something that I have noticed Munchkin does have. Perhaps the countless hours of play therapy I did with her from pre diagnosis days has paid off. It is still something that the SLT said was a problem at her last assessment as she doesn't appropriately play with the toys, ie. she can spend ages setting out a play tea set, but doesn't pretend to feed dolls etc... when she is given toys at SLT she will organise them, tell you what they are, set them out etc., but peers her age will apparently play with them differently. She has an interest in toys and has for a long time, but her attention span can be compared to a goldfish with Alzheimer's at times, preferring to flit from activity to activity, leaving a trail of scattered toys and objects in her path... But she does like toys.




From an early age, Munchkin developed a passion for jigsaws. Strangely though, she never liked to look at the box to see what she was supposed to be making, preferring to work out the picture herself. It was the one thing that could keep her attention for prolonged periods. We started with the usual 2 piece ones and now at 3years and 3months of age, she will happily do 35 piece puzzles. The smaller ones she has now started doing upside down. We have a shelf full of boxes and bags of jigsaws in the kitchen, where if the opportunity arises, she will scale the counter to reach them! Unfortunately, we have a jigsaw munching dog who likes to chew them up so most of our puzzles are missing a piece or if the dog was in a particularly funny humour... the box!



Her love of jigsaws is so strong, that when introduced to them on the computer, mastered the art of dragging and dropping with the mouse to complete them... Only yesterday, when the mouse was missing, she figured out how to use the touch pad on the laptop! She never ceases to amaze me...

When I look at her playing these days, I see a little girls imagination growing and developing. I listen to her "talking" for her toys and realise that she is acting out scenes which she sees at home. I just hope she doesn't act out the fights the Gruesome Twosome have, as social services will be down to check us out ha ha. Can imagination be learned? I'm pretty sure I never taught her to put empty crisp packets on her feet like she did earlier. When I asked what she was doing, she replied "like a shoe." I know that it wasn't what I asked but was blown away by her imagination...

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...