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.

Recognising Signs as a first time special needs parent -

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.

Recgnising signs: Gilbert as a newborn in his dad's arms -

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.

Recognising signs: Gilbert and his Dad -

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.

Recognising signs: Gilbert having his bottle -

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.

Recognising signs: Me and Gilbert -

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.

Recognising signs: Baby Gilbert -

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.

Recognising signs: Gilbert as a baby with his dad -

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)

Recognising signs: Gilbert as a toddler -

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!

Parenting Children with Special Needs

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

Ripples on a Pond: Warning Signs of Early Childhood Development Problems | 3 Dinosaurs

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13 Responses

  1. Renae says:

    This is beautiful! I love all the details from the compliments about his hair in the hospital to Gilbert time. The pictures are gorgeous. He looks so happy and so loved. The approach you took with this post was so wise, because you’re right, those milestones are what we memorize. Thank you for sharing your story. Your son is absolutely gorgeous!

  2. Lydia C. Lee says:

    Good post. I did not know of this ‘glowing red’. I’m quite intrigued. But we all miss signs. Massive signs but no one tells us….Hindsight and all that.

  3. He is such a cute baby! One of my boys was born with very white hair, which was a little odd since we are both dark.
    A very touching post. A great link up too. X

  4. Vanessa says:

    This is really interesting, I had never thought how a first time parent might recognise a child has special needs – because everything is new! And it’s a great example of where support from a good medical team is invaluable.
    Vanessa recently posted..Is This Petty?

  5. Thank you for sharing your story. I would have had no idea either – such a cute bub!

  6. Paula says:

    This is a great reminder for parents! Thanks for sharing your story!

  7. Ivan Jordon says:

    I agree. It’s already hard enough to be a first time parent. But to notice signs that we are parents to special needs kids? It’s a learning experience..
    Ivan Jordon recently posted..Stunning Secrets of the House Flipping Business

  8. Lauren says:

    I realize this is a post about special needs, but I want to take a moment to comment to all parents. We, as a culture, have failed to teach parents how to read our children and pay attention to their signals- ALL AROUND. Not just special needs. I’ll give a couple examples. Most breastfeeding moms I know do not understand how to nurse on demand. They say they are, as their baby fussy and cries or roots for their breast by turning their head side to side or sucking on their hand. These are all signs baby needs to nurse, but most moms are clueless (or simply choose not to respond). Another example- babies will fuss and cry at the breast- unlatching and relatching and crying- when they need to pee or poop. This is why elimination communication is practiced around the world and people take their babies to the potty. We are, as a society, so out of touch with our children- including physically.

    While I didn’t have a special needs child, I dropped the ball so much with my oldest child because I didn’t know what signs to look for and how to meet the needs behind those signs. I had a fussy unhappy baby as a result of my failure to recognize. If I had been better trained to know the signs I would have saved us a lot of stress and problems.

    None of the popular parenting books tell you what to look for and how to respond. We end up with a lot of parents that are out of tune with their children and oblivious. In the long run, this hurts the relationship by diminishing trust and communication. Parents, in general, need to take a step back and LISTEN to their children.

  9. I don’t think there’s any book that can prepare you for parenting. It’s definitely a case of learn on the job and I can imagine how easy it is to miss signs, especially as a first time parent. No wonder you missed the signs, no doubt you were swooning over your super cute baby! So adorable and you made that!

  10. It’s so good that you point out how it’s not always all about the milestones. You’re right. Those milestones are so drilled into us as soon as we are pregnant with our first child. And of course, they are important to monitor. But other things that just don’t seem “right” are important to notice and check into, also.

    I kept thinking while I was reading how it was actually probably a blessing to have those first sweet months minus concern and diagnosis. To just bond with your babe without the albinism.

    Thanks for sharing, Mama!
    Krissy Bonning-Gould recently posted..The Best Audiobooks for Kids – To Fit in Some Summer Learning

  11. Bess says:

    Thank you for sharing your story. And you’re right, the milestones only mean so much. We found ourselves in a similar situation where things didn’t seem right but the check boxes were marked off. I appreciate your positive outlook. He’s adorable!

  12. Katherine says:

    Regarding milestones I think my son is on his own path. I didn’t have a special needs child the first time. In some ways I think that I had it harder than others because I watch my son not achieve milestones that his sister did.

  1. July 8, 2016

    […] Recognising Signs as a First Time Special Needs Parent | My Home Truths […]

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