Redefining my rainbows

What is a rainbow baby?

A rainbow baby is a baby born shortly after the loss of a previous baby due to miscarriage, stillbirth, or death in infancy. This term is given to these special rainbow babies because a rainbow typically follows a storm, giving us hope of what’s to come.

I have 2 of those. My 3rd baby, my 2nd son, was stillborn in 2008. 14 months later I gave birth to another son, and 2 years after that I was blessed with a 4th son. My rainbows.

But these days, the rainbow has taken on a new meaning for our family. No longer is it only synonymous with the definition at the top of this post. It also represent a whole other world too. The world of ASD (Autism spectrum disorder)

At 2 years of age, my youngest child was mute. We had been in awe of the baby who never cried. Through meningitis and all the painful procedures that come with the diagnosis, treatments and recovery, he never cried. His first 18 months of life, suffering chronic GERD (gastroesophageal reflux desiese) biopsy, ph studies, NG tubes, apnea, lung infections, medications. He never cried. We had the most placid quiet baby ever.

But at 2 when you are asked how many words your child has……..ummm none. Is he doing this, or that?…… The health visitor gives you this look, because you ticked to say you have no concerns, you start to see that your ‘good’ baby, is in fact a 2 year old with global delay. His small size allowed you to fool yourself that he was still a baby, not a toddler. A toddler who wasnt hitting development milestones.

How did you miss that, you have 3 other children. Your mind switches back on to the 4.5 year old destroying the clinic room, the flustered health care assistant struggling to engage him in a game, asking if he is always so lively. Of course the baby is quiet, he cant compete with that. Its obvious. Isnt it?

Referals go in, assessments, questions, speech therapy, babble therapy, questions about your other children, ‘do they exhibit signs too? Signs of what?

As day to day life goes on around you, are thrust into a world you had visited, but were not a part of, now it is your world too. The piece ‘Welcome to Holland’ suddenly has a whole new meaning to you.

Its overwhelming, you are lost and dazed, you are finding your way in the dark, being helped by those who have navigated this road before you. MAGIC by name, MAGIC by nature. I’d still be fumbling in the dark without them.

We are now almost 3 years down the road. 3 years of fighting for support, services, input. You feel like a leading expert while still being clueless. We are still awaiting official diagnosis of ASD for the youngest. But guess what, he talks some now, not always easy to understand, but he is getting there. I waged war on the local Authority to get him 100% support in school too, what a difference that has made. We are also making tracks in getting the now 7.5 year old the help and support he needs, and again, awaiting official diagnosis.

So welcome to our rainbow rollercoaster, we are still under construction, and I’m sure it’s going to be a bumpy ride…..

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