All children are special, some are just extra special…..

FB_IMG_1501142692078From day one, nothing went as planned or as expected, but he always takes everything in his stride. No matter what struggles or challenges he faces each and every day, his cheeky smile lights up a room, and his laugh can melt any heart.

I’ve learnt a lot from my extra special child. I learnt acceptance. I learnt there is always more to learn. I learnt to appreciate the small things more. I learnt to value every single achievement, no matter how trivial it may seem. I’ve learnt the best time to go food shopping is 5am (fully stacked shelves and no long lines at the till)

I’ve also learnt that as parents, we need to teach our neurotypical children, to be more accepting of those who are different. Our children look to us when experiencing something for the first time, and our reaction shapes how they respond in the future.

So instead of telling your child not to play with, or stay away from, the child who flaps and squeals. Explain their brain works differently, and they do things that other children dont, but thats ok.

I know its hard if a child is rough and hits or pushes in excitement. 9 times out of 10, the parent of that child will make them say sorry, give a hug, or otherwise aim to correct things, explain their child didnt mean to hurt your child, they just dont know the social norms yet. Give them a chance to learn, to go about it better and play with your child. Encourage your child  to be kind, forgiving, accepting.

When at a birthday party, and you know one of the other guests has additional needs, dont sit back and watch your child enjoy stressing that child out by chasing them and getting in their face, we all heard the child and their mother ask your son to stop. Make him stop.

Feel free to ask special needs parents questions, we dont mind. Anything that help society understand our children, makes the world a better place for them.

So yeah, another lesson I’ve learnt, people are not always kind. Some parents of neurotypical children are brilliant, others seem intent on raising the next generation of ignorant, bullying arseholes.

So while you tell your kid to stay away from, or be mean to mine because they are different, I tell my children, people like you, are not worth knowing.

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…..