The first year of my journey

This is my first blog I wrote on the Firefly Community website and I decided as we are approaching my daughters first birthday I would share this blog on here. This community is such a wonderful place to go, I can read reviews, write questions in the forums and I have just felt less alone on my journey as someone who is parenting a child with a disability. I would highly recommend going on and signing up if you are dealing with any form of disability in a child. They also have a twitter page which is always handy to follow as they share up to date reviews on their products and blogs.

 

This time last year I was pregnant with my 4th child, we had just started the long journey of assessments for my then 4 year old to be diagnosed with high functioning autism and possible sensory processing disorder. I didn’t think my life could get busier.

I thought the time I was waiting for an appointment for my son would be the only appointment I would be stressing about. How wrong could I have been?

Fast forward a year and the length of a consultant’s waiting list is the least of my problems.

I have learnt in the last 6 months more medical jargon than I have in all my life.

I have been on Google more times than I have eaten a hot meal to research different conditions, different symptoms, just in case there is a new article regarding a child that is similar to my baby that wasn’t there yesterday.

I have learnt what the difference between developing slow, development delay and global development delay is.

I have learnt that the doctors do not know everything and even when there are lots of symptoms sometimes the doctors still scratch their heads.

I have learnt polite answers to people who say ‘there isn’t anything wrong’ ‘all babies develop differently she just doesn’t want to move’ when all I want to do is break down and cry and ask ‘were you in the last appointment? Did you hear what the doctors said? Are you better than the doctors?’

I never thought my life would be so full of appointments.

That my calendar would now be jam packed with occupational therapy, physio therapy, support workers and hospital visits.

I never knew an ‘open access letter’ for our local hospitals paediatrics ward existed until a couple of months ago.

I didn’t realise that it takes 11 minutes from my house to the hospital on a good run.

I just didn’t know how much my life would change.

I look back at how I worried over the fact my other babies didn’t crawl at 6 months like their friends and now just shrug and say my baby will crawl or walk or move when she wants.

My mothering has completely changed. My life has completely changed.

I bought a highchair that will probably never be used and even though my daughter is 10 months old the high chair just sits at the end of the table gathering dust, I can’t quite bring myself to get rid of it, yet deep down realistically I know it will never be used.

I have sold all the rockers, all the activity tables I had excitedly got while I was pregnant as I don’t want to be reminded that my baby is globally delayed.

I am sure one day she will be ready to play with them but for now I am not emotionally strong enough for that reminder in the nursery.

I now don’t brag at going to baby sensory class and buying sensory toys, I now go to sensory classes and buy sensory toys because my baby needs them.

I have learnt so much since last year and I realise that my journey is just beginning.

I am now starting to look at adapted equipment to help bath my baby, feed my baby and help my baby play.  I am starting to learn of new forums and charities who can help support us.

I have learnt to celebrate every little thing and have learnt that my daughter is perfect she is just unique.

My journey is just starting.

My daughter has shown me so much already I wonder what she will show and teach me in the years to come.
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