Milestone Junkie

As with every other aspect of my parenting story so far, Wade’s developmental delay has me swinging wildly from graciously understanding the reasons why everything takes longer to learn, to tearing my hair out over why he can do some things easily and not others.

Kids with Down Syndrome are usually characterised by some degree of developmental delay. When they are older, this is usually known as an Intellectual Disability. The reason for this is an Intellectual Disability is a specific, clinical term that is determined by an IQ test. When children are not old enough to be formally assessed this way, they are known to have developmental delay. Developmental delay means that our children can learn and can develop along the usual trajectory but everything takes longer to learn and often requires some specialist help along the way. This usually affects all aspect of development including the physical, the cognitive and the intellectual.

Before Wade was born, I remember being shocked at the approximate ages that children with DS achieve physical milestones. I couldn’t imagine a 9 month old unable to sit up or a 2-3year old unable to walk. It completely floored me. Like a lot of things I read during that time, this kind of information is general and each child develops completely differently. Wade, for example, came out of the gates racing. His gross motor skills were quite good. He has low muscle tone but he was quite strong and active. I would put him on his back and he would kick his legs about and wave his arms. It didn’t take that long for him to lift his head during tummy time and other DS parents and medical specialists were very encouraging about how well he was doing early on. This is when you get your first taste of that tempting, intoxicating parenting drug….praise. You get a high, you feel fantastic. Nothing gets better than this. Continue reading

Frames for baby blue.

There is something magical about Wade’s eyes. From the moment he fixed his eyes onto mine, on the day he was born, I have been drowning in those pools of wisdom. He says more with his eyes than he can with gestures and speech. Without a doubt, I love those crystal blue eyes more than anything so I was very worried when at about 9 months old, I noticed that his eyes weren’t tracking together. It would only happen for a second or two but it was there. Luckily Wade’s uncle and aunt who are both optometrists were staying with us not long after it started happening and recommended that we see an ophthalmologist.

We booked in and the ophthalmologist examined his eyes through this binocular type device and identified that he is very long sighted. She explained that when the eyes look long distance they should be at rest but if you are long sighted, they struggle to focus causing eye strain and fatigue which can cause one eye to drop inwards. This is known as Accommodative Esotropia and is quite common with people with Down Syndrome due to the low muscle tone. Low muscle tone is best described as the muscles having to work harder than normal to achieve the same outcome. Like walking in water or walking uphill. It is not the same as muscle strength. Therefore, if you are long sighted and your eye muscles are straining to focus, they work even harder if you have low tone which causes the weaker eye to give up and eventually it can drop inwards permanently if left untreated. This can mean eye surgery or permanent vision impairment. Continue reading