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.
But it wasn’t long before I entered that highly addictive world of “Your child can do that?, Why can’t my child do that???” I’m pretty sure this world is not reserved for special needs parents. This monkey gets on the back of every parent on the planet. The main difference for me is that when your child has a developmental delay, you know that you have to persist before the skill is going to sink in but you have no way of knowing whether that particular technique is actually going to work, or whether its a complete waste of time. When your very young baby has yet to develop many communication skills, it’s hard to look into uncomprehending eyes and work out whether this is something that will just take time or whether this is as good as it’s going to get. Before you know it you are chasing the next hit. Anything to get that next Milestone!!
Wade has always been physically very strong. He used to kick the ever-loving jeebers out of my ribs while I was pregnant with him and while he struggles to summon up the hand-eye coordination to eat sultanas, he has no trouble lashing out, with no warning, to grab hold of my nose, with pinpoint accuracy, removing swathes of skin in the process. His development usually goes in waves so I spent the majority of the first year lurching from the expectation of a new milestone to celebrating several in quick succession. Amazingly he stood up at 7 months. I didn’t even know he could do this.
Friends of ours had an activity table they were putting into storage and I stood Wade up against it to see what he would do. He leaned his giant round belly against the edge of the table and started to play with it. I took my hands away and he just stood there. He couldn’t sit or crawl or roll, but he could stand up against this table! It was amazing. He sat unaided at around 9months and started trying to commando crawl a little after this. Then he did nothing new for ages. Talk about having cravings!! I knew the next step for him was to get himself up into the sitting position from lying. This requires a lot of arm strength and coordination to twist onto your side and push yourself up. Wade has always been strong in the legs but his arm strength has always needed more work. During this time, I had to keep telling myself that he would do it eventually. It’s not like he was going to be 18 and lying on the lounge room floor, unable to get up!! 2 weeks before his first birthday, after weeks and weeks and weeks of trying, he finally got himself up. This was a momentous occasion for me and for him. He was so proud of himself.
After this it was like a light went on inside him. He realised he had freedom and movement. Over the next few weeks and months he spent so much more time experimenting with what he could do with his body. We would model new movements for him by putting his body into the positions so that he could learn to pull to stand and to four-point crawl.
Here’s a little bit of his handiwork!
All of this is wonderful and I got a ton of praise and encouragement from friends and family about how well he was progressing, but like any true addict….it’s never enough. I would just start coming down from my new high and all of a sudden, I’m watching other kids with DS around Wade’s age pointing or saying words or identifying pictures in books or clapping or any of these wonderful communication skills and I’m doubting myself all over again…. dammit.
I have been teaching Wade how to clap since he was born. It’s become my bugbear. The fact that he is so advanced with his physicality yet seemingly unable to learn any new communication skills was starting to freak me out. For me, communication is vital. I love language and my sense of humour is dry as a bone. I love understanding the nuances of a conversation or getting my point across with a well timed raised eyebrow. It cuts me to the core that I may never be able to sit down and argue the finer points of the meaning of life with Wade. Maybe I will… I’m not writing it off… but it is important to me that Wade can understand the world around him and be understood. People with DS often struggle with communication and understand a lot more than they are able to express verbally. It would break my heart if people completely dismissed him as useless simply because he couldn’t make himself understood. And this is why I was starting to worry. How was it that he could spend mere weeks practising how to crawl but after 16months of training he still couldn’t clap his hands together?
Wade is very expressive with his face. He uses his eyes and his cheeky grin to get his point across and he loves to dance and move to music, but I have never been able to tell when he is hungry or if there is something that he wants. He uses his finger to tap inquisitively on things or to explore my face but he doesn’t see something he wants and point at it. He makes a few sounds that could be “Dad” or “Mum” but nothing that I can definitively say is a true expression of what he actually means. I would discuss this with my friends who are also DS mums and my logical brain would nod and concur as we spoke about how our kids all develop differently with different strengths at different times. It makes perfect sense that while is learning how to pull-to-stand and learning to walk, he is less likely to be spending brain power on learning new communication skills too. But the Milestone Junkie in me wants more, more, MORE!!
Then, last week, which was no different to any other week, no lunar eclipse or alignment of planets that I know of, Wade waved for the first time. We waved at him and he waved back. Astounding….and spectacularly cute. Then I clapped and he did what he usually does, which is reach out and grab my hands and clap them together. You see, somehow we got into a loop where I clap to show him how it’s done. Then I take his hands and clap them together so he feels what it’s supposed to feel like, but then he reaches out and grabs my hands and claps them together. As far as he is concerned, he has done exactly what I asked him to. This little charade has been going on for about 6 months now. But on this day, I clapped his hands together and then He Did it On His Own! The look on his face was priceless. He was so proud and happy and excited. All the lights went on…. “Oh, you mean you wanted me to do this!” Since then he has been looking at his little hands, turning then over and clapping them together, waving at himself then clapping again…trying on his new skills for size. The euphoria of him achieving a major milestone such as this is completely addictive! It is also enormously relieving because it validates the efforts that we make but more than anything it fills my heart with joy to know that he understands me. It gives me hope that he will be able to fully express that sparkling little personality I know is in there.
Milestones… I’m not addicted! I can quit anytime!