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My Advice About Milestones as a Mother of a Child With Down Syndrome

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Is he smiling yet?

Is he sleeping through the night yet?

Is he crawling yet?

Is he walking yet?

Is he talking yet?

Is he writing, counting to 100, reciting the alphabet, reading, standing on his head while riding a bike yet?

Little boy with Down syndrome playing with a yellow pirate wheel in a playset

Parenting, to me, seems to have turned into one big competition over whose child is the fastest at achieving things. I find it so demoralizing. I just want to be with my child and watch him grow. In my opinion, there is too much pressure on parents, and it can potentially take away the enjoyment of what I consider to be the best job in the world.

It’s wonderful to be proud of our children, and every parent has the right to brag about their achievements. But why compare? Our little humans are unique; they have their own talents, interests and personalities, and it’s OK for them to do things in their own time. Milestones shouldn’t be ignored, but I don’t believe they should be obsessed over or turned into a competition. It’s exhausting to worry that much. I want to follow my instincts and enjoy my babies when they’re little.

I want to see my children, really see them. I don’t want to base everything on a book, the internet or whatever everyone else’s child is doing. Even “experts” don’t know my children. But I do, and I refuse to compare them to their friends; they’re themselves and will do things whenever they are ready.

As adults, we need to believe that just because our children learn something a bit later, it’s not a result of our parenting. We’re not better parents if our kids walk or talk early, and we’re not worse if our children take their time. Have you ever met anyone as an adult and asked them at what age they learned to write their name? Or at what age they first fed themselves? In the grand scheme of things it isn’t important. The reality is all children will mature and develop at their own rates, and just because a child does something earlier it doesn’t mean they will achieve more later in life. I believe it’s the understanding, guidance, patience and love of their parents that will ensure they reach their full potential, not pressure and force. Pressure can hold children back, and make them feel they’re not good enough.

As a parent of a child with a disability, the best thing I ever did for myself and my son was to throw away the milestone charts. Neither of us needed that pressure, and it’s been wonderful to enjoy the moments when they happen. And they will happen, many of them already have, and many of them will when the time is right. The best bit of advice I can give to any new parent of a child with Down syndrome is to do the same.

I’ve learned that comparing my son to “typical” children is the worst thing I can do for my sanity. I understand many of us cling to the hope that our children can keep up with their peers and achieve the same things, but whether we want to admit it or not, our children will have delays. I’m not saying they can’t achieve things, I believe with my whole heart that my son, River, will achieve a lot in his life, but it may not be at the same time as everyone else. I’m sure there are things he will pick up easily, and things that will take time and perseverance, and even things we have to accept he won’t be able to do. I just want to enjoy every single achievement as it happens and not worry about the rest.

And why put myself through the added pressure of comparing my son with others who have Down syndrome? As an advocate, I’m always saying it’s OK to be unique, that as a society we need to accept differences and treat people equally. So why would I compare River to anybody else and wonder why he isn’t achieving the same things yet? He is River, and he can take his time and do things when he feels ready. I have total faith in him and his abilities, and I know if I offer him the right tools and believe in him, he’s going to do just fine. It’s not important to me that he does things before or on the same timeline as anyone else.

When River was born he seemed really strong despite having hypertonia, which is common in people with Down syndrome. He lifted his head off my chest and looked me in the eyes when he was only a few days old, and he rolled from back to side in his first weeks. I wonder if his strength threw people off and therefore he was not diagnosed until he was 6 months old. As River got older, his development slowed down and the gap between him and his peers became more noticeable. It was then I realized that me comparing him to other “typical” children and hoping he would develop the same way was doing him a huge disservice. He isn’t the same; he is different. And instead of trying to make him the same, and show the world he is the same as other children, I should be showing the world he is different and that’s OK. I want to show society that children with Down syndrome are different, and it’s beautiful and acceptable and nothing to be ashamed or afraid of.

As a parent, I need to take a step back and realize what’s really important — that my children are happy. If I believe in my children and encourage them, they will achieve everything they are meant to achieve. They will be good at some things and not at others, just like all people. Some things will come easy to them and some things will take hard work, just like all people. I’ve learned that by worrying about the things my children can’t do yet, I miss out on all the amazing things they are doing right now.

So my advice is to forget the milestones and love the moments.

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Originally published: March 29, 2017
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