(A big thanks to Nykie of Mistral Photography for these beautiful photos of Wade!)
Recently Wade’s communication has been really taking off, and with it has come a new sense of independence and knowledge about what he likes and doesn’t like. He is more opinionated and his sense of humour is really coming alive! Now that there is a bit of to and fro to our conversations, it’s like he has more ownership in a conversation which is beautiful to watch.
We had a wonderful exchange this morning after he turned on the telly with the remote. It came on to a kids channel showing “Play School”. Wade loves pushing buttons so even though he is watching the show he likes or listening to a song he loves, he will still push buttons to turn it off or change the channel. He played with the remote and the channel changed so he came over to me, handed me the remote, pointed to the telly and said, “School”.
“You want me to put Play School back on?”
This sounds like nothing but these kinds of exchanges are so remarkable when you think about it. A few months ago, he was just starting to speak, now he is not just copying what I say to him, he is using his words to initiate a conversation and get across how he feels about something. He has gone from the odd word here and there to hundreds of words, relentless attempts to copy full sentences, speaking in two and three word sentences and being so much clearer that people other than his nearest and dearest can actually understand what he is saying (or at least trying to say).
One “fun” aspect of his slowly developing language is the realisation that all those swear words I drop carelessly a into conversation have been softly landing in his memory bank. I discovered this through a recent bout of road rage as I heard coming from the back seat “Ah…SHT”. Now, this is a remarkable achievement for him and I should be celebrating because after three years of teaching him the word “Sheep”, we are no closer to him saying it. I have shown him flash cards, innumerable repeats of “Where is the Green Sheep”, soft toys, songs…all sheep related, all with me repeating the word “sheep” over and over but every time I say “What’s this?” I am told “Baaaaa”
…..drop a couple of curse words while driving and…Ta Da!…instant results. Maybe I should start a new speech therapy movement. The Fish Wife Method: Teaching Your Child to Speak Through Swearing.
Seriously though, I am loving this new side to him. I didn’t think it was possible but having more language and more assuredness of his body and surroundings means that he draws even more people in. Going out in public these days is like painting the streets with smiling paint. I know that I’m biased…and as his mother I am expected to say these things but there really is something about Wade that people pick up on. I’ve been told too many times by too many people, both people I know and random strangers that Wade just makes them feel good about themselves and makes them happy. It’s more than just the cute waves he likes to hand out relentlessly at the moment and the killer smile. There’s the peace that surrounds him. The simple, filter-less honesty is mesmerising.
The problem is…it’s also addictive I think.
I have always suspected that he has a deep understanding of people and can read situations accurately. He is very intuitive and emotionally intelligent. He just hasn’t been able to express it that well until recently. He would never react badly as such but he would shut down around certain personality types, like a telepathic “talk to the hand”. Now that his language is developing, his body language and physical confidence is developing too…and I’ve made a really interesting discovery this week.
There’s one day a week when we go to see my pop at the nursing home, then we go and have lunch at a restaurant, and we have been doing this for a most of his life. There are some residents at the home who don’t have any visitors at all so when an adorable 3 year old drops by, the temptation to follow us around the halls and inundate him with questions and love can be hard to control. As Wade is getting more confident with his communication, I am noticing he is less willing to visit the other residents when they are in groups in the lunch room. He seems much happier to pop in and see them individually in their rooms. He used to walk through the common area and wave and smile but now as I approach it, he backs away and refuses to go in. The more intensely someone wants his attention, the more apprehensive he is becoming. He is more drawn to the quiet peaceful people who allow him to approach them rather than the other way around.
I started to feel really apprehensive about it because it is heart breaking when a resident (for whom walking is clearly difficult) follows us around the entire centre hoping for Wade to engage with her but he gives her nothing. In fact, the last time we went, he pushed her away (gently…) which he has never done before.
It happens when we get to the restaurant as well. He has become a bit of a celebrity down there with the staff and the customers. One lady finishes her lunch then sits and waits for us to arrive every week just so that she can have “her fix”. Problem is? He doesn’t always want to engage with her which is incredibly awkward. To her credit, she is really understanding and doesn’t mind (and continues to wait every week regardless!). I thought the best thing to do was to pick him up and insist that he engage on some level with her because it felt like her love and appreciation of him should be rewarded in some way but now I don’t think that’s right. I think I have been ignoring something really important.
Because he is learning language slowly, including body language and other unspoken cues, I need to be even more respectful of his comfort level. By overriding the information he is giving me, I have been effectively telling him to ignore when he feels uncomfortable/ unsafe/ overwhelmed and continue to engage with someone. Unspoken language is so important. I have relied on my gut for a lot of things in my life and more often than not, it is right. It takes a long time to develop a trust of that feeling because society expects that we should always be polite and always be nice.
As an adult without an intellectual disability, I feel reasonably confident that I can handle the complexity of a giant warning bell going off in my gut while politely and gracefully getting myself away from a situation that makes me feel uncomfortable. As a toddler who does have an intellectual disability and is only just working out what “normal” social interactions sound like, I don’t expect him to be able to do that. I expect him to walk away, shut down or try to resist a person if they try to talk to him, pick him up or touch him when he doesn’t want to. These are the tools he is using at the moment and I need to listen to that.
Don’t get me wrong, it is important for me to continue to teach him what polite behaviour looks like and not to be rude and but it is ok for me to remove him from a situation that he is not enjoying as well. I’m not for one minute suggesting that the people he doesn’t engage with are somehow bad or dangerous!, but I do think that if Wade is uncomfortable or doesn’t want to interact, I should give him the space to learn to moderate what makes him comfortable and what doesn’t, himself…even if it means a lot of really nice, good people miss out on some attention while he works it out.
Mostly it’s a safety issue for me. I’m worried that in an effort to repay everyone’s good intentions with smiles and hi fives, Wade won’t learn what an uncomfortable or unsafe feeling feels like. I want him to develop the confidence and the awareness to know what discomfort feels like and feel brave enough to act on it. I want him to learn to tell the difference between a person who makes him feels safe and loved and a person who doesn’t. I want him to learn to trust his gut even if there is no logical reason to.
Wade has a visible intellectual disability. People can tell he has Down syndrome as soon as they see him and I know they are making all kinds of assumptions about that. Part of me seriously couldn’t care less but another part doesn’t want him to confirm any stereotypes that might be floating around in someone’s head. It’s very tempting for me to prompt Wade into behaving or reacting in a devastatingly adorable way just to ward off negative opinions about how bad my life is (wrongly) perceived to be. But I have decided that it’s much more important for him to learn to believe in his own feelings first. I won’t allow him to be a rude brat but I won’t force him to love everyone either.
Now…to reign in my swearing because it won’t be cute or adorable when he starts telling everyone to F*** Off!