Recognising signs as a first time special needs parent
As a first time parent I knew all about milestones. I didn’t know much else about parenting but after reading pregnancy and baby books for 9 months I was an expert on milestones.
You know the ones – the first time your baby smiles, sleeps through the night, rolls, sits, crawls, walks and talks.
You may know NOTHING about babies or children before you fall pregnant. But I guarantee you will know ALL the milestones, and when your child should meet them, by the time your little bundle of joy is first placed in your arms.
However, as a first time parent I didn’t really know as much about recognising signs. Signs that your child may have additional needs. Signs that your child won’t reach milestones on time, if at all.
My eldest son was born via emergency c-section, following a normal, easy, uneventful pregnancy. He emerged with white, almost translucent hair and was the talk of the ward – no-one had seen such a glorious shade of blonde before.
I remember taking him home and cradling him on our bed as my husband and I wondered what we should do now – we felt so out of our depth having to look after this tiny human being. His total dependence on us was overwhelming.
Somehow we managed to muddle through those first weeks as new parents. He fed well, put on weight and slept a lot. He had his unhappy moments but overall he was pretty cruisy – we were “lucky” parents.
We loved watching him lay in his bouncer, intensely looking around him. His eyes would never stay still – they were constantly moving from side to side as if he could not get enough of this new world around him.
He also had moments where he stilled and seemed to go into his own little world. We’d call these moments “Gilbert Time” and watched on indulgently as he fixated on something beyond our comprehension.
We were also intrigued when we caught a sudden glow in his eyes – there were times when they would unexpectedly glow red. We thought it was a newborn quirk, just like his constant eye movements and his tendency to retreat into “Gilbert Time.”
Like most new parents we were diligent with his check-ups, determined to give him the very best start we possibly could. At his 6-week check-up, the community nurse expressed some concern with his eyes and asked us to follow up with our doctor.
We felt a frisson of concern but were confident there was nothing much to be concerned about. He was meeting his milestones after all – that’s surely all that mattered?
The doctor referred us to a paediatric eye specialist to cover all bases but didn’t seem overly concerned – he was a healthy little boy and we were doing everything right as new parents. Our concern started to melt away in the face of his lack of concern.
We duly visited the paediatric eye specialist so he could examine our little cherubic baby boy. We almost felt sorry for wasting his time – surely there was nothing to be concerned about? Our baby was happy and content and meeting his milestones – there couldn’t possibly be anything wrong.
Except there was.
Our son had oculocutaneous albinism.
The signs were all around us, but as new parents, we didn’t recognise them. The white hair. The pale eyes. The translucent skin. The occasional reddish glow in his eyes. The constant movement of his pupils. The tendency to zone out with sensory overwhelm. The inability to cope with glare & too much sun.
These are all signs of albinism. And at 11 weeks of age, our perfect little boy was diagnosed with a condition that only occurs in 1 in 20,000 people worldwide. A condition that is misunderstood and misrepresented the world over.
To that point he had met pretty much all his milestones. He would smile and laugh and respond to our voices. He was gaining weight, sleeping as well as a baby can and bringing so much joy to our lives.
So you can understand our shock and disbelief when we first received his diagnosis.
Albinism is not life-limiting and while my son does have a significant vision impairment it has never stopped him doing anything he really wants to do. And he still ended up meeting all his milestones, he just reached them at his own pace and in his own time.
Monitoring milestones is an important way to assess a child’s development but it really is only one piece of the parenting picture. Recognising signs of potential concern is another, one that isn’t really talked about so much in all those baby books.
We were lucky that we had medical specialists to help recognise the signs that we missed so we could give our son the best possible start.
Because it’s not possible to read every single sign, let alone understand whether it is something to worry about or not.
(So please don’t get wrapped up in guilt if you miss signs (like I did) – we are all only human after all x)
But as parents we need to understand that recognising signs is just as important as reaching milestones.
I just wished I had have known that after all my copious amount of pregnancy reading!
This post is part of a new Special Needs Parenting blog hop where myself and other special needs bloggers will share our thoughts on a set theme each month. This month’s theme is “recognising signs.” I’d love for you to check out all the other posts linked up for this month!
Autism What to Know and Signs to Watch For | Natural Beach Living
How to Recognize Signs of a Mood Disorder in Young Children | Every Star is Different
Sensory Processing Red Flags | Lemon Lime Adventures
Seeing the Signs of Childhood Trauma | STEAM Powered Family
Recognising signs as a first time special needs parent | My Home Truths
Hemophilia, Juvenile Arthritis, and Allergies… Oh my | Grace and Green Pastures
Myths About Recognizing Developmental Delays | Life Over C’s
Recognizing the Signs of Reactive Attachment Disorder | The Chaos and The Clutter
7 Sanity-Saving Tips if You Think Your Child has Special Needs | B-Inspired Mama
When They Say It’s Just Your Parenting | This Outnumbered Mama
Signs That Your Early Reader Has Hyperlexia | And Next Comes L
How to Deal with the Unexpected Learning Disability | Kori at Home
Forgiving Myself for Denying the Signs of Autism in My Daughter | Parenting Chaos