Milestone Rehab

It’s been two months since I wrote Milestone Junkie, about my lack of patience when it comes to working on new milestones with Wade. In it, I wrote about how Wade learns some skills quickly and others take ages and how keeping a sane rational mind about it seems to be harder for me to learn than for him to walk!

Well, my little guy has been royally spoiling me these last two months. The day I described, when he learnt to clap has been a springboard for his communication, confidence and personality. (Not that he needed a boost in personality but the cuteness level has now gone into overdrive…).

The timing of these new milestones and a big surge in his comprehension of the world around him couldn’t have come at a better time. Recently I’ve been feeling a bit frustrated with his developmental delay. Rationally, I get it. I understand all the hows and whys surrounding it. I know he will learn and do new things but lately I’ve been getting impatient. Maybe it’s the winter blues, when getting out of the house and doing things seems too much like hard work…rugging up in 20 layers of clothes, taking hats and umbrellas and staring at the radar to see whether you are going to get caught in a downpour as you venture out of the house. I know we have both been a bit bored around the house and I consider taking him to a play centre or a park with play equipment and then it hits me…

What’s the point? All he will enjoy is the swing. I know this is awful but its a symptom of a bit of frustration setting in. I’m ready for the fun toddler times when they run around madly, climbing all over things, go exploring. (I will regret saying that I know…) I’m ready for him to follow me out to the car so that I don’t have to carry him everywhere and I’m ready for the next stage when we can have a conversation and tell each other things.

Selfish much?

But just like that, things have started changing…

Since he learnt to clap and wave, he’s been making more and more new connections with his communication. He has always found everything I do hilarious but lately, he has been trying to make me laugh. He pulls funny faces and looks at me with this sparkle in his eye just waiting for me to crack up. He pretends that he’s angry with me and purses his lips together and squints and waits for me to join him in a stare-down, then laughs all over again. He is so funny. Lately, he stares me straight in the eye and tilts his head slowly to one side. I do the same. Then, without taking his eyes off me, with the best dead-pan expression, he tilts it over to the other side. I do the same. Then he laughs…he thinks this is hilarious…and it is.

Not completely related but this photo makes me laugh anyway!

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Watching him as the world around him expands into more and more things to become interested in is such a wonderful thing. One of the positive sides to developmental delay is that even though it can be a frustrating wait between stages, you get to observe the changes happening before your eyes. Other parents I know talk about the “blink and miss it” changes that happen in their toddlers but I get to watch it unfurl, step by step which blows my mind. I get to see the pieces falling into place…the lights go on….and the look of surprise he gets when something he has been unable to do for so long, suddenly becomes easier.

Lately he has discovered the drums and the piano. Slowly but surely over the past year or so his love of rhythm has grown. As he gains more control of his body he has started expressing himself more and more. What started as a simple rocking from side to side to the beat, has grown into a state where everything that can be held is a drum stick and everything that can be hit is a drum. Wooden spoons on the high chair, blocks on the floor, his toothbrush on the lino under the toilet (urrggck…) and of course, actual drumsticks. We have been sitting him next to a drum and he goes for it! He experiments with the different sounds that can be made on the rim of the drum or the skin. Then he will move the sticks to the floor or the nearby toys to get a variety of sounds. He absolutely loves it…. And he’s pretty good too.

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I have a piano at home and even though I play badly, I have played for him since he was in the womb and sat with him on my lap from birth, clunking out an accompaniment to songs I like while singing to him. Over time he started reaching out for the keys and trying to play. At first he didn’t haven’t the strength to push the keys down in a way to make a sound and his interest would wane. Gradually he started making a sound and he realised that different sounds occur depending on which keys you hit. He would thump his hands down on the white ones, then the black ones, then up, then down the board. Using his feet made a louder sound and that was fun too. Through my delusional parent eyes, I became convinced that he was a budding virtuoso and every clumsy thunk was a potential work of interpretive-jazz-fusion genius but the perfectionist helicopter parent in me has been trying to show him the times when two notes sound good together as opposed to the random bunch of notes he happens to hit with his hand.

Today he did just that….just like that…

He used his forefingers on both hands and quietly isolated the notes and played different individual notes like a chord. He gets it! He’s been listening and watching and now he is showing me that he understands. Beautiful boy.

This week Wade also learnt his first sign. It is common for kids with Down Syndrome to learn Auslan keywords from a young age. The reason for this is that it can take a long time before our kids start speaking and making themselves understood. This can cause frustration as they often understand more than they can express and by using signs, they can get their message across more effectively. I have been very hit-and-miss with teaching him sign language. Wade has always been very vocal, making a variety of sounds from a young age. I felt that he wouldn’t have any trouble learning to speak and I got it into my head that if he learnt to sign, he would be less inclined to use words.

This is half the story anyway…

The other half is that I got frustrated showing him the sign for something abstract like “more” or “finished” and having no idea whether he was even capable of understanding what I was trying to convey. I was being inconsistent so I stopped doing it. Lately however, now that I can see the progress he is making and can see the comprehension starting to occur, I started up the sign language again. And this week, he learnt his first one….accidentally….and one he is unlikely to ever use in a typical day…

Monkey…. Of course!

We have been trying to get him to make different animal sounds when we say the word for the animal or show him a picture. Partly because its a good exercise for different mouth shapes and sounds but mostly because it is cute as hell. For the elephant sound, I have been raising my hand in the air like a trunk and very quickly, Wade started doing it too. For the sound of the monkey, we have been trying to get him make an “oo-oo” sound. He hasn’t been able to do it yet so I took his hands and made the motion of the monkey against his ribs. We all pretended to be monkeys and he thought this was hilarious. Within minutes, he copied us and now whenever we say the word monkey, he does the action. I looked up the sign for monkey and sure enough, that is it. The sign for elephant is completely wrong though…oops… Never mind.

I am so excited by the new phase of development he is entering in to. I find it interesting that his physical development and mental development seem to tag-team each other as if he can’t work on them both at the same time. However now that I am seeing real progress and the fun he has as he sets off to find a new corner of the house to explore I can feel the frustration subside. He can pull to stand and cruise around the furniture. At the rate he is going, he will be very close to walking in a couple of months and then I guess I will be writing an aggressive rebuttal to myself, asking myself to explain how I ever thought it would be a good idea to encourage him to walk when I am chasing him all over everywhere!

One thing that doesn’t seem to change though, and I hope it never does, is his sense of peace. I’ve mentioned it many times before but it gets me every time. The only way I can try to describe it is that I feel that he has a sense of knowing which is completely separate from his understanding or his intelligence. It sucks people in and leaves them quiet and reflective. It’s most obvious to me when I’m saying good-bye to friends or family and I realise that no one is leaving and everyone is just watching Wade as though they just don’t want to leave him. It’s not supernatural or otherworldly or divine, it’s just him.

And it’s heart-crushingly beautiful.

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8 thoughts on “Milestone Rehab

  1. It is not every post I read from beginning to end without skipping a word, but I love reading about your life with Wade. Lovely post and well written, from the heart!

  2. I can so relate to that milestone frustration! It has definitely subsided since my gorgeous boy took his first steps this April at 27 months. His language skills are now starting to take off, and there is a bitter- sweet feeling in watching his extended babyhood coming to a close as he embraces toddler-hood (and surprises everyone who thought he would never throw tantrums because children with DS are so placid!). As impatient as I have felt at times, I do think I am lucky to have had this experience with my first child. One tip I will pass on – my husband and I also had trouble being consistent with signs, but found a great iPad app called baby sign and learn. It has pictures of the object, and then a cute little animated person does the sign. My son loves it, I’ve found it much easier to learn and remember to use signs myself and its also helped the staff at daycare become more engaged with the signing. All the best and thanks for the great blog

  3. I feel like my heart is loving your son to try to gear up. He’s adorable. I’ve got somewhere between a month or two to go. I gravitate between being excited at times and then at other times feeling despondent. The despondence feels like a setback. At times I’ll feel like things are moving along swimmingly, and I’m past my sadness, and ready to love this boy and be a dad to him… then I’ll just snap for a moment and suddenly envision that I’m throwing whatever I’m holding in my hand across the room. It doesn’t last, but I want it to go away. Do you still have moments like that or does it seem to just melt away over time as diagnosis becomes baby? You can be honest.

    My wife keeps asking me about names. I keep putting it off. I have a few in mind. I don’t tell her what they are. I don’t know whether it’s the diagnosis or whether I just fear putting a name on this baby and taking that abstraction away from it and making it so real. A name makes you human, and I sometimes don’t feel ready for him to be a human.

    Also, we’re broke, lol. Just thought I’d share that as well. We had a really nice savings. It’s gone. And the baby’s not here yet. Maternity leave isn’t paid, and she’s most of the income. I may have to go back to car sales. Grueling hours, but the money would be good. I can afford a kid, if I don’t ever get to see him. Or I can see him, but not afford him.

    Hope it’s okay to vent. I look forward to being on this journey like you are instead of staring down this journey and at times feeling defeated before I start.

    -John

    • Hi John, I’ve been thinking about you and your family. Did you get the email I sent you?

      As you can tell from my posts, I still have times of difficult thoughts with Wade, especially when I worry about his future. But it was much harder before he was born. You might find it easier when he comes and you can see him and hold him. The hardest part during the pregnancy can be that you read all about the issues that MAY come with DS, but your son may have some, a little or a lot of them. You won’t know till you meet him and you might find it easier when you know what you are dealing with. The fear of the unknown is always harder than the reality of what’s in front of you, I find.

      Rest assured, I don’t think parenting would suddenly become easy just because the child has 46 chromosomes! I think being a first time parent is hard. Full Stop. I think, the fact that you are thinking about all these things and asking questions means you will have a great head start and you sound like you will be a wonderful dad.

      Have you guys connected with your local Down Syndrome Association? You might meet some parents who could help you.

      I’m getting excited for you! Make sure you let me know when he is here…I want pictures!

      • Thanks, Leticia, and yes, I did get your email. It made a great impact on both my wife and I. The comment about our child being as different from other children with DS as from any other child was important for us to hear. We’ve made some connections, but not yet with any parents in the DS community. My wife had an ultrasound today and told me tonight casually that they’re going to send her to a cardiologist because one of the ventricles is larger than the other. Oh, okay. So now I’m back in freak out mode of course.

        I’ve always felt like I’d be a good dad. Now I’m not sure. I get frustrated with people when they can’t keep up with me intellectually, and I always envisioned me pushing my son to be better and to challenge himself. Now I have no idea how hard to push or what’s “enough.”

        I still have no clue how I’m going to react when the baby comes. Tears of joy? Sadness? Both? No tears? I always generally know how I feel, but have a difficult time expressing it. Other than in writing, obviously.

        Hope you’re well. Have a good evening.

        -John

      • It’s a rollercoaster, that’s for sure. Be kind to yourself. There’s a great little saying I heard not too long ago.
        How do you eat an elephant? One mouthful at a time…
        Stay in touch.

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