The Development Conundrum

For those parents out there who struggled to navigate the world of Down Syndrome, I am 100% there. The plethora of information that hit us when Molly was born, both medical and developmental, was overwhelming. In particular, the statistics dehumanised the whole process and made the initially raw feelings of anxiety, despair and bewilderment somewhat difficult to bear. A lot is thrown at you and I am definitely no expert but I feel as if I’ve been studying for a qualification in child development ever since Molly was born, something that I might not feel as knowledgeable about if she hadn’t been born with Down Syndrome.

“50% of children with Down Syndrome have a congenital heart defect.”

This terrified me. The heart is a major organ and I was convinced that having a heart condition would be really obvious. When 7 doctors had listened to Molly’s heart at various appointments and check ups and couldn’t hear a murmur I was extremely positive. So I didn’t expect them to find that she had a leak on her Mitral Valve at her heart scan when she was 13 weeks old. For me, it brought Molly’s condition back into focus, something which I had almost forgotten whilst I was meandering through the initial weeks of feeding, nappies, expressing and trying to establish some sort of routine to my life. I was given symptoms to watch out for, mottling on her face, blue tinged lips, breathlessness when feeding but (fingers crossed) Molly hasn’t demonstrated any of these yet and so for now she will have follow-up appointments to check her leaky valve is not getting any bigger.

Developmental Delay

As Down Syndrome (DS) is a spectrum, how it affects each individual person is measured initially by those developmental milestones. The first few months of motherhood were filled with anxiety for me as I worried that every moment I wasn’t providing some sort of sensory stimulation or experience for Molly that I was wasting her development, that if I left her on her play mat during one of her waking cycles it would somehow damage her development. Maybe it’s the teacher in me but I’ve always been a control freak and Tom will testify to this. In fact I’m certain he said something similar in his speech at our wedding (obviously phrased as a compliment!) I thought if I just let her be she would coast and not develop in line with her potential. As a result I spent the first 2 maybe even 3 months of Molly’s life in constant entertainment mode when she was awake. I missed lunch, sometimes didn’t get a drink for hours on end all because I felt I couldn’t leave her or that I was selfish if I did.

I look back now and I know this sounds like I’m insane. I think the hormones, sleep deprivation and steep learning curve of early motherhood combined had this effect; coupled with the surprise of Molly’s diagnosis and my determination that it wouldn’t matter.

Now Molly is almost at 5 months, my fears are abated. Quiet time is crucial for processing new experiences and I shouldn’t be afraid to let her play alone on her play mat as this allows her time to figure out how her body works, what her hands are for and how to use them. As I said earlier, I found the statistics and tables comparing development of typical children and children with DS rather dehumanising so I have chosen to know them but ignore them to allow me to focus on Molly as this incredible little person. Molly will be who she will be and my leaving her to play on her play mat for half an hour while I have a cup of tea won’t harm her. I’ve found keeping a journal of mini milestones has helped me know what bigger milestones she is working towards so I can encourage her. This has been invaluable when talking to the physiotherapist, speech and language therapist and paediatrician as it has meant their advice and guidance is more specific to Molly, where she is and where she is going.

A day in the life of Molly…

Since bringing Molly home from hospital I’ve realised how crucial repetition is and what a profound effect it has on her development.Every night I sing a German lullaby (Wiegenlied) to her before putting her to bed. Tom now refers to this as “the drug song” as it can turn even the angriest most distraught screaming fit into a peaceful, smiley baby. She knows it’s bed time when I sing it and it settles her before I put her down. Music is of great importance in Molly’s life and with a guitar teacher for a Dad and a Mum who sings constantly that’s no surprise! Most days I will sing her nursery rhymes with my ever improving Makaton signing and now she is showing recognition of certain parts of songs through smiling and gurgling and I can see that she is watching my every move. We listen to John Williams’ music (obviously Harry Potter!) during bath time and dancing to Paolo Nutini, various Disney songs and the Buena Vista Social Club will always get a delighted grin and a giggle.

Molly has become very vocal in the last couple of months, with intonation, eye contact and a variety of sounds included and every morning is an extremely enthusiastic conversation. I say “Mama” to her about a hundred times a day but no luck yet!

In the last two months I noticed that Molly was beginning to show signs of reaching out to grab things and so I bought some linky loops and a few other bits to encourage her. I attach them to everything: the car seat, the baby gym, the highchair, the cot – and now she’s grabbing everything all the time (even her feet!) when she’s awake and asleep!

We are currently practising rolling from back to front using a blanket to give her more momentum while she focuses on coordinating her “landing position”. As a result, Molly has managed to roll onto her side a few times in the last week. We practise sitting every day (this is the new favourite) and yesterday she sat alone for at least 5 seconds before beginning to face-plant her legs and the floor. Apparently, despite rolling front to back at 7 and a half weeks and doing it constantly when put on her tummy, Molly has forgotten how to do it now she has better head control on her front and so we are trying to reconnect the dots where that’s concerned too.