Standing on the outside looking in...our life with autism

[maz]

After being involved in some discussions on BB of late ive felt it might be beneficial to me to do a journal of sorts and maybe to others to help them see that life isnt always black and white, that there's alot more grey sometimes. This will be in instalments so please be patient with me

I'll start this back 9 years ago now and work my way up so it may be a long process but its something I am more then willing to share (as I have done before with my other little guy ) as I think its important to let people see how the other half live

Id only just had Nikolaus and I knew from the moment I first layed eye's on him that I couldnt leave him to be an only child, life was to short to worry about the do's and donts and we found ourselves pg by his first birthday. I always had this sense if you like..something just didnt feel right...when ever I had someone get excited about the baby that was coming i would cringe and feel like i had a dark shadow hanging over me. I double checked with every anntenatal appointment, every u/s..but they were all perfect...baby's HB perfect, measuring perfect..hmmmm yet I didnt feel my baby move at all..no elbows trying to break through my tummy, not feet trying to dangle out of the escape route.

c/s day came..and I remember sitting in the hospital bed the night before scared witless yet excited to what exciting life this baby would have. What lay before him, what he would look like and if he would be as happy and gorgeous as his big brother. I tell ya, I know the road is sometimes a little rocky...our road had the biggest potholes in it, which we were soon to discover.

I had made arrangements with the annethetis the night before to have Jed in with us as he had missed out on Nikolaus birth and cutting the cord. She was absolutely wonderful and having a bad back we tried several times to do a spinal block and last attempt I felt everything so I had a GA again....an omen..shiat! I knew it something was wrong.

But as I woke in recovery to my husband holding a crying little red headed baby boy my heart sang. The first few days in hospital were perfect.

Later in our hospital room I watched my perfect baby sleeping in the sun that shone through the window. He had this glow about him...the most perfect skin, long fingers that would sometimes fan out as his hand reached for something unseen to me in the air. I often dream about those days still.....it was perfect.....he was perfect.

then we went home and it all changed.......................

My new baby turned into this screaming unsettling monster from hell!!!! I was so sick and tired of hearing that I had been spoilt by Nikolaus. This kid barely ever slept and when he did it was for short periods! MY god I was a walking zombie. I held him and he screamed , made himself stiff and lashed out at me with his tiny fist. I asked the MCHN if he was alright and was told to try this or that...but I just knew deep down that nothing I could do would make him happy...so i just started to not touch him, and it started working. He was content sitting in his rocker, sucking on his hand looking into space. He started smiling.......my god it was beautiful. His eyes smiled along with his lips and his nose wrinkled....but that smile faded, along with looking for me....his eyes became blank as if his soul had been taken and never replaced. The happy gurgles that once came from those breath taking full lips were silent and the laughed became no exsistant.

It was then that the dark shadow had returned only this time it bought rain.

[bjrose]

I can't wait to read about your journey.

[Mum2OneSweetBun]

Oh Maz,

Im waiting for your next installment too.

Ever thought about publishing your story?

[organicem]

Hi Maz
Am looking forward to reading the rest.

[Marlene]

I am looking forward to reading your story Maz. A very good friend of mine has an almost 3 year old who was just diagnosed with autism. I think it will beneficial for me to read a story from a mummy's perspective.

[tan32]

Maz.
you always write your journeys so beautiful, i agree you should look at writing a book, especially for those of us who have those same somethings not right feelings but are yet to continue on the journey. Thank you for putting this all down in words for us to read.

[squidipa]

wow im getting all emotional and looking forward to hearing your journey

[rhyb]

Id love to read this as my brother was recently diagnosed with Autism. Big hugs your way miss

[~Trish~]

I'm looking forward to reading your full story Maz. You tell it so well, thanks for sharing it .

[~Leasha~]

Hope you continue writing maz

[jasp]

Thanks for sharing this Maz, looking forward to reading your next installment.

[*charmalea*]

hugs maz , may this be the realease you need xx

[christy]

Maz its funny you did this... I was thinking yesterday and started writing a "journel" of our time until now.... I may feel like releasing some on BB if you don't mind. I just find it amazing that you started it nearly the same time I finished writing mine yesterday!!!

[feeb]

hope this gives you release you are after, looking forward to following your journey

[futuremum]

You write beautifully, I will be a regular visitor here, I have rated your thread

[DoubleK]

Maz good on you for sharing your story. i am looking forward to reading more.

[*becstar*]

Thanks for sharing Maz, I love reading your journies

I know a tiny bit about autism but as you said, it's invaluable to hear how the other half live. When I finally get out teaching I'm sure to encounter ASD but really I have no idea how it is to live with an ASD child or to see it from a Mum's perspective. So thankyou

Whenever someone asks me about your covers or nappies I always (after giving them a glowing recommendation ) go on to say I am so proud to be able to support you as a WAHM because you are a Mum of 4, two of which are special needs. It's not a sympathy vote, or pity but pure awe and amazement and what a fantastic strong, passionate woman you are. If you can handle 4 kids, two who need special attention, be a wife and a WAHM then I can handle anything my 3 kids and hubby throw at me. You are my inspiration Maz, whether you know it or not.

xxx

[MrsB26]

Maz, you are an amazing mum and i'm looking forward to reading this journey. My nephew was recently diagnosed with autism and he and his brother both have tourettes. Its close to home for me and i'm sure your story will help me gain a different perspective. Much love coming your way xx