As parents of special-needs' children the idea of progress (or lack thereof) is always on our minds. Initially it might be watching our children fail to meet typical milestones, still hoping they will catch up. Then after it becomes obvious they are not catching up it becomes a desperate search for any signs of forward movement, no matter how small. While parents of typical children might boast about trophies and academic achievements, we tend to rejoice at each word said, any emerging sign of self-care or independence or a friend made.
Social media has given us the means to brag about and celebrate our children's achievements because we all get how hard they were worked for and anticipated. As members of the special needs' community, we all get the pride and happiness about everything our child is able to do, because by now we don't take anything for granted. While for some that might be sad, for me it was a lesson in perspective and humility. As a parent of two older, typically-developing children I never gave some milestones a second thought. While of course we celebrated "big milestones" such as walking, first words, potty training, so many seemingly trivial "firsts" have escaped my mind. I don't remember when my oldest son started eating with a spoon, or when he started putting his socks on. Or when my daughter was first able to draw a happy face or started caring for baby dolls. It wasn't even in my mind that it could NOT happen, so I didn't really notice when it did.
I think that's normal really. If we kept track of every single thing our children were able to do, our minds would explode. With our special needs children, it is reversed. The list of the things they can't do is often larger than the list of things they can. If we kept a running list of all the "can'ts" then our minds would explode. So we find the "cans" and we focus on those. I don't think I have ever been as keen in observing nuances of development and behaviour as I am now with Sophie.
I so often read parents' reports of an annual check-up and being crushed when the doctor pulled out the "age-appropriate" chart and started running down the list, reminding the parent (as if they needed reminding!) of how far the child diverged from his or her peers. It happens in doctors' offices and during many meetings for various services. I get that an overview of a child's development is necessary, especially for supportive services. But in most of these situations, the person already has a copy of the child's diagnosis and delays. Especially a paediatrician. I think it should be a standard practice to review the patient's most recent developmental report (let's say which placed the four year-old at roughly an 18 month old's level of development) and then proceed with a 2 year old's milestone chart to see how many accomplishments the child achieved. Wouldn't that feel much better for the parent? We all want to brag about our children a bit. The age outlined on the title means much less than being able to say "yes she can do that!" for at least some of the things.
On that note, Sophie has been making slow and steady progress since her diagnosis. There is no chart for Sophie's kind of progress, at least none that I've seen. How do you measure that she's falling much less and walking more steadily? That she can almost break into a run, although not quite yet? That she's getting much better on the stairs? Or behaviourally is there a chart for "somewhat longer attention span?" Seeming to understand and follow directions better? Showing interest in her surroundings? Attempting to interact with more people by offering shy smiles and longer gazes? Because she can and does all of the above. And there's of course her emerging communication (via AAC) She requests "watch Thomas" with proficiency (usually the precise engine she requests is Jack or Spencer). She picks snacks from the food menu. And just this morning, for the first time ever she directly answered me (I "spoke" through her app "need bath", to which she promptly responded "no"). There's no chart for that either, and yet it made my day.
|Weaning off stroller- another milestone|
Being a special needs parent is hard in this competitive world, full of charts and progress reports and measurable milestones. And yet, I feel lucky to have found this community, where nothing is taken for granted and every achievement is celebrated. When I post Sophie's little tidbits of progress and see all the "likes" and warm comments, I don't take that for granted either. I always try to reciprocate in the same manner and there are so many little (and not so little) special kiddos I'm rooting for these days. So thanks y'all. I'll keep bragging about my Soaps until you're all sick of me ;)