Three under three

You’ll probably remember our post about when our twins got sick and were hospitalised. That was when we learned about Lorelai’s Albinism diagnosis and therefore her legally blind diagnosis. We also learned that she was aspirating into her lungs when she was drinking milk and a nasal gastric tube (NG tube) was inserted. We had to learn how to feed our daughter through a range of ways (some by mouth and some by tube with a side lying feeding position to limit aspiration risk).

In the days, weeks and months that followed we made countless trips back to the hospital each time the tube came out. At least weekly but usually every few days. Our little girl was growing well and making gains, but these regular hospital trips at all hours of the day and night were not just taking a toll on us, they were taking a toll on her.

She was always such a happy, chilled baby. And then we’d have to pin her down and let hospital staff insert the tube down her nose. She’d scream and cry until she was hyperventilating. It’s horrible to do this to a child you love, especially a little baby that trusts you. I dreaded each time it came out for the hurt it would cause my daughter.

In November when Scott was away on a camp, in the early hours of the morning, during the still of the darkness, I heard Lorelai in her cot making strange breathing noises. I knew that sound all too well. I picked her up to discover once again her tube was almost out. I pulled the rest of it out, and in that moment hearing her distressed cry that we had become so familiar with for each tube change, I decided enough. Enough of the distress on my baby girl. If our “urgent” appointment at The Children’s Hospital wasn’t going to be until she was 8 months old, then my little girl wasn’t going to endure another tube unless we were admitted to hospital.

And here we are, almost 4 months later and she is thriving. Yes, I’ve had to be extremely careful with her. Always feeding her in the special side lying position, head raised and thickened milk. Yes, I’ve had to be so alert and watch for any of the signs of aspiration before it occurred. And yes, we’ve done well together.

We had one hospital trip a little while ago when our specialist team asked us to trial non-thickened milk (like most babies have). She did well for the first day and then declined slowly until she wasn’t drinking, became lethargic and had a fever. I knew these were the red flags for possible aspiration and pneumonia so I took her to the hospital which was part of her management plan. She bounced back quickly after a short stay there and we put her straight back on thickened milk. She’s done well ever since, as we continue to wait for the Children’s Hospital appointment to explore further what is going on.

Justin has similar feeding issues as Lorelai so he is fed the same way. He also has pretty bad reflux and thankfully medication has helped him a lot.

Due to the complexity of their feeding, especially the tube, I felt so confined to home. It was so hard to get out at all. Over the last few weeks I’ve been making a big effort to get out with them. It’s exceptionally hard to do with my back being so bad. I fractured my back when I sat down a few months ago and and also when I tried to lift one of my children. The last scan revealed 5 spinal fractures. It’s quite scary having osteoporosis, knowing I can fracture at any moment but I’ve decided not to let that prison me. I’ve been doing physio exercises with the aim of strengthening my core to support my bones.

Jeremiah is such a wonderful big brother. He loves his twins. They love him. Jeremiah especially loves his brother Justin. He’s always trying to make him laugh, and Justin is always looking for Jeremiah. The laughter between those two is music to my ears.

Lorelai is on the move. She’s almost crawling and isn’t going to let her vision impairment hold her back. She is extremely sound sensitive so perhaps she will love music.

We are extremely tired. That’s an understatement. Haha. Jeremiah still wakes a few times during the night, Justin wakes every few hours and Lorelai sleeps mostly through from about 8/9pm until 4am. If we could get them all in sync we’d have more sleep for us haha

Sometimes I feel like time has flown by too quickly. It really has. All those years waiting and praying felt like forever, and now the last 3 and half years have flown by. Can you believe Jeremiah is 3?! This kid is amazing. He makes me smile so much. The conversations we have melt my heart. I love hearing his thoughts.

I don’t get to update this as much as I’d like, or to talk about mum life as much as I’d like, because the season we are in now is survival mode. And trying to be in the moment as much as possible. Life as a mum of twins and a toddler is full on. Beyond any words I could use to describe this. BUT I love this. I wouldn’t change any of them for anything. They are such beautiful blessings. I love seeing them grow and develop. They take my breath away daily.

Three under three. Life is hectic. Life is full. Life is unpredictable. And I’m so blessed beyond measure with these three beautiful miracles.

World Autism Day – 2nd April 2020


Happy World Autism Day. A day so very close to my heart. I was once like many. I was scared of autism. I was scared of potentially one day having a child with autism. I hoped and prayed that when we eventually had kids, that none of them would have autism. Oh how naive I was.

Autism isn’t something to be scared of. It isn’t something to worry about if your child has it. Autism can be a beautiful gift. A blessing.

I remember looking at my beautiful baby boy who, at 6 weeks old, still wouldn’t hold eye contact with me like other babies would with their parents. I remember the flapping hands as he would lie on his back looking at the world around him – this is called stimming. My teeny, tiny, little baby. I saw the red flags early. I documented anything I saw. And slowly, we had a 3 page list of autism traits by the time he was a year and a half. (It’s important to note that almost everyone has some traits that are ASD traits, this doesn’t equate to being on the spectrum.)

I had worked on eye contact with him from the very beginning. When he would enter a doctors appointment he would look at the doctor as I had taught him to do with people. But it was never quality. Eye contact does not equal quality. Doctors would comment about how he couldn’t be on the spectrum because he’s got eye contact. Oh if only they knew more.

I’ve always had such a keen interest and passion for children and adults with disabilities and special/additional needs. I’ve had many interactions with children who have Autism. And I’ve loved each of them dearly. Their love of life and uniqueness is something to love and embrace. Not to be scared of.

We went on the long waitlist for my boy to be officially assessed for autism. That list was a long wait. A year! In the meantime I took him to be tested privately (they can’t give an official diagnosis or a level number) and it turned out he was very highly likely on the spectrum. No surprise.

We did lots of work with him, he saw community speech, but we were already doing everything she suggested (bonus in having an early childhood degree – we did a lot of study into children with additional needs). We finally got some OT for him (massive waitlists there too) and psychology too (even longer waitlist).

The week before I was due to have the twins, it was finally his official assessment time at the hospital. I got us ready early because I know anything can set him off and then getting in the car can turn into what feels like world war three, well almost. And unfortunately on this morning that is exactly what happened. I gave us an hour and a half extra in case this happened. And it did. It took that long for him to get into his car seat and be clipped up. It wasn’t a tantrum. It was a meltdown. It was a change in his regular routine. And for the first time ever with his meltdowns, I ended up bawling my eyes out.

We were, in the end, half an hour late to his appointment. Not because we weren’t ready in time (we were set to be there an hour and a half early as I said before) but because we couldn’t leave to get there.

That assessment took about 4 hours to complete. It involved extensive reports from other health professionals who had been working with him, multiple assessments done there at the hospital by the paediatrician, the OT, the Speechie, the psychologist and the social worker. It was all filmed too, and students on their Prac placement at the hospital were watching from behind a screen so they could learn. And multiple questions to me. It was long. Draining. Hard. But so worth it.

I guess I went there knowing the answer but hoping I was going to get a different one. I don’t know why. I guess life is hard enough without having additional needs.

The team had their discussions away from us after all of the assessments and when they returned, we were still in the assessment room. We had been allowed to go away for a bit, but my boy wouldn’t leave the safety of the room that he was now comfortable in.

The team delivered the news. Yes, our concerns were grounded in reality. Our little boy, almost 3 years old (at the time) is on the spectrum. Level 2 Autism. That is quite a significant diagnosis/level requiring significant intervention for him. Lifelong.

My head began to spin in a wilderness of relief and realisation. Relief that finally my boy can gain access to regular early intervention which he so desperately needed (he was still mostly non-verbal at this stage). And the realisation that this is him. The rest of his life he will be finding ways to fit in and blend in, in a world that is scared of people with autism. In a world where people would rather not vaccinate their child, potentially allowing a disease to KILL their child, *in case* vaccines cause autism (I firmly believe that vaccines DO NOT cause autism – I saw these red flags BEFORE his vaccinations began). [side note – please do not turn this into a vaccine debate.] I realised my boy might be treated differently. That people may not give him the time and love that he needs because he is different to other children. He had already been through so much with his spina bifida and spinal surgery when he was just one year old. Now this.

But you know what? He’s now almost a year post official diagnosis and he’s THRIVING!!! He does need to be taught many social things explicitly and reinforced a lot. Life is a constant juggling act to try to avoid most triggers while allowing him to have some so that he can learn coping strategies with us supporting him as he does this.

And he has taught me so much. Autism is not something to fear. It is beautiful. The way he sees the world is refreshing. The way he problem solves things is amazing. I’m learning all of the time from my miracle little boy. He gives me so many laughs. He is absolutely hilarious. Such a character and everywhere he goes, he turns heads. He is perfect as he is.

Yes autism, is a neurological condition and therefore is challenging for my boy and for us to navigate the world through his eyes. But I wouldn’t change things. It is what makes him extra special. Extra amazing. Extraordinary!!!

This time last year he wasn’t speaking. He was still signing for communication. Now, he’s come so far. We can actually have conversations with each other. It brings tears to my eyes. I am beyond proud of him and I know he will use his ASD to bring so much awareness, understanding and love for people who have ASD.

Autism is not something to fear. It is not something to worry about. It is a unique way of seeing the world. It is real. Authentic. Beautiful.

I saw an interview today with a boy and his mother. The boy has autism. During the interview the boy yawned as things were getting boring for him. I smiled and let out a big laugh. I love this. I love that people on the spectrum often (not everyone) don’t innately have the social awareness of what would be considered appropriate. I love that they don’t hide behind masks but that they are real, what you see is what you get.

If you ask my boy if he’d like to hug his (mum, dad, grandparent, friend etc) and he doesn’t want to, he replies “no” and carries on doing whatever he’s doing. Love the rawness and truth. He tells you life how he sees it. If he gives you a hug, it’s real. If he tells you he loves you, he means it. And often he finds such unique ways, far beyond his years, of solving a problem or challenge.

So on this World Autism Day, I hope you find so much love for these special, unique and incredible humans who we need so much in our lives. They will be the ones that fill in the gaps that neurotypical people can’t. Atypical neurodiversity needs to be celebrated. Because when you do, you create a world where my beautiful boy will be loved, supported and be able to reach his full potential.

He lights up my life.
Love this kid so much.
He is the best big brother to the twins.