The beginning.

When our daughter *Ella was born almost 18 years ago, we thought life couldn’t get any better.
She was such a placid, gentle and happy baby. Slept through the night at 6 weeks and grew into a beautiful toddler and completely captured our hearts.

Roll on 3 and a half years and our 1st precious son *Harley was born. He was a gorgeous looking baby, perfectly formed but my mother’s gut instinct told me that he was very different. Special but different.

And we were still years away from finding out exactly what made him so unique.
He had silent reflux which is like regular reflux with the difference being that he never vomited. The reflux would just sit in his little throat and cause him enormous discomfort and the poor little thing was in constant pain. He barely slept and was miserable most of the time.

As he started to grow up  I became very aware that he wasn’t showing any interest in peoples faces and wasn’t interested in interactive games at all.
When he was only 14 months old I was diagnosed with a 5cm acoustic neuroma which is a benign brain tumour and had to have a 13 hour surgery to remove it.The Doctors I had seen previously regarding *Harley dismissed all of my concerns about him saying that my tumour had clouded my judgement and that he was completely fine.

It wasn’t discovered that *Harley had autism until he turned 4.

I completely lost the hearing in my right ear due to the tumour and 9 months after that surgery, I had a corneal transplant to restore my vision in the opposite eye that was blind from an unrelated condition that I’d had since birth.

So once again, I was leaving my child alone. It took me years to stop blaming myself for this.
3 months later I found out that I was pregnant with our 3rd child *Lucas and immediately started to panic.

The OBs told me that due to my previous recent head surgeries, I wasn’t allowed to give birth naturally and that because our baby had been exposed in-utero to MRI’s, x-rays(my lungs collapsed during the brain surgery) and radioactive injections, that our baby would most likely have birth defects or I would miscarry. Thankfully, our 3rd child and 2nd son *Lucas was born perfectly formed and only weeks later,*Harley his older brother was finally diagnosed with high functioning autism.

*Lucas was diagnosed with aspergers when he turned 3 himself.

This blog is my outlet when autism starts to consume me, my personal venting post and also the place where I rejoice in the daily achievements of my  beautiful family.
I feel enormously blessed by what God has entrusted me with and know that he is continually flooding me with the grace that I need daily.

* The children’s names have been changed to protect their identities .

39 thoughts on “The beginning.

  1. Its interesting to read about the silent reflux. Gus also had. Terrible feeder from birth. Major hassles with breastfeeding until he was around 5 mths and then great til around 9mths when he was selfweaned somewhere in amongst all this he was dx with silent reflux. Wish it had been picked up earlier may have helped and given him less pain us more sleep

  2. One daughter, two boys with asd… I have a similar journey. My daughter is the youngest, though. She puts up with a lot from her two brothers! Thanks for following my blog… I’m now following yours!

  3. Hi just found your site and am absolutely enjoying your blogs, I have 1 son with Aspergers who is 6 1/2 and another boy of 4years who is his constant punching bag ( they do love each other and look out for each other) and I do wonder what their relationships will be like when they are both adults. I loved your getting ready in the morning blog, I experience that every morning too getting out the door to school and to work is an achievement let me tell you! I usually need a strong coffee by the time I get there ( I am a nurse) and cope with other people’s problems. Let me say that some days I just cannot manage it at all and wish I had another career! I look forward to reading more when my boys let me!!!!!
    ange

  4. So glad you have found you! I look forward to reading your blog! I am on Facebook (A Chameleon in the Spectrum) as well as having my blog (A Chameleon’s Blog. My son was finally diagnosed at 4 yr with PDD-NOS but he looks very much like Asperger’s. I have two “typical” girls that “bookend” our dude. See you around!

  5. I remember having silent reflux. It was yukky. I’m a lot older now and my digestion is a lot better behaved. Some of the food that was around in the 1970’s was sensory torture! I’m 39, diagnosed asperger’s in 2002 🙂

  6. Hi and thanks for following 🙂

    The reflux stopped bothering me by the time I was a teenager. I still had a lot of it going on and my girlfriend (when I was about 25) noticed that it was only a problem when I wasn’t using cannabis! I didn’t get my asperger’s diagnosis until about 5 years later and didn’t start using cannabis as medicine properly for asperger’s until about 10 years later. I’m age 39 now. I didn’t think it was worthwhile smoking ganja all day every day just for flatulence, but now that I can see that it reduces the asperger’s that’s why I do it, and as a bonus it sorts out my tummy trouble.

  7. Same goes for most places, that should be changing soon. Even if not medicine, people shouldn’t be trying to address the drug problem with prison and arrests, that just makes things worse! If you get the chance, say NO to prohibition – we can’t afford it and it just doesn’t work!

  8. After your comment on my blog I was eager to read yours. Wow 13 hours in surgery.. I had a 5 hour op to remove a brain tumour last year. I’m very happy to meet you, and I’m looking forward to reading more of your blog. All the very best to you.

    • Hi Michelle – so sorry, I’ve only just found this comment today Eeeek!
      I would love to come and check out your blog. I’ve taken a screen shot of this comment so I remember to do it later 🙂

  9. Just found your blog via Twitter. You are just the sort of parent thst I am doing my ride for this year and to raise autism awareness. Hope you don’t mind if I share?

    Thanks for sharring your experiences.

    Chris

  10. Hi there, I have been reading your blog for a while now. I have a daughter on the spectrum aged 4 and 9 months. I can so relate to so much of what u write. I love reading your blog. It makes me realise that I am not alone in this struggle. 🙂

  11. Hi Fi well i finally had 5mins to myself tonight to come check out your blog I Love It it’s so raw and honest and to be truthful it makes me feel less of a nut job mum trying to cope with Miss gifted now 9 Miss Tijana 6 who by the way is thriving at mainstream thankgod she has a truely AMAZING teacher and my newly diagnosed Miss Adrijana whos now 2and 1/2 i so knew something wasnt adding up with her hello mothers instinct well just thought i’d say hi glad u had mum around it would have been wonderful Take care xxx

  12. Hey. I read this when I first came on wonderfully wired and it touched my heart greatly. I am going to be honest by saying that I am but 11 years old. This article was really great. I love it very much. It taught me a lot about life. I have never had a decease, brain tumor, migraine, or any symptoms like that. Not even broken a bone. I find that it is very fortunate of me to have not yet had anything bad or serious in my life just yet. My sister, though, broke her wrist last year and now has just gotten braces. I feel bad for her because she is going through an awful lot with the braces. Not being able to eat certain foods, complaining about the pain, and feeling terrible. She also had to get her seventh grade shots this summer. Yes, she is going into seventh grade. Three shots to be exact, one on her right shoulder, and two on her left. She has to get a follow up shot in September, and four months after that, another. I am going into sixth grade and I had the choice to get my shots done this year. I decided it’s better to get them now, and so I did. Your article really taught me that a lot can happen in your life. A lot of bad things. Like what you and your kids suffered through. I love it. You truly are wonderfully wired. =D

  13. Hello wonderfully wired, thank you for sharing your story. I recently started my own blog (only 2 posts so far, one about autism, as both of my children have this diagnosis) and know that sharing can really help. Hang in there, you are not alone…

  14. Hi Fi, I’m Karen’s sister and she recommended your blog to me. I have an 11 year old son with ASD and I’m looking forward to reading about your struggles and triumphs! XXX

  15. Hi, I just found your blog tonight. My son is only three years old and doesn’t have an autism diagnosis. His biggest issue is a pretty severe speech and language delay. It’s so helpful to find other people dealing with similar issues. Thanks for sharing!

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