Friday, July 31, 2015
I started blogging about special needs for me. For my family. For parents like myself and my husband. Parents who have spent agonizing months waiting for evaluations. Parents who have celebrated milestones alone because every one of their child's peers all passed it long ago. Parents who have cried in a public place after hearing their child's first four-word sentence spoken spontaneously. Parents who don't want to care that their child has no friends, but whose hearts still sink a little as they watch him avoid peer interaction.
I choose to share mostly positive things. There are those who have criticized some blogs, passing judgment on them for being "too happy" or "not showing enough of the negative side" of autism. Autism is not always happy. Not having autism is not always happy. No one has the best day of their life every day.
However, in our autism journey, the highs seems to be higher. The lows seem to be lower. We have hard days in every week. We have hard moments in every day. We are not lacking in challenges and difficulties. They are so plentiful, in fact, that if I focused too much on what my children can't do or how difficult our 'everyday' reality is compared to what it could be, I would drown in the collective weight of it.
So I make a daily choice. To not focus on the meltdowns. The hours spent on the phone with insurance and doctors trying to secure services and push for referrals. The hours spent talking with the school to ensure they know my child's needs. The multiple times a day I've had to help a child with a self-care task they "should have" mastered years ago. The times that I've gotten in the car after a playdate and cried on the way home because, yet again, we couldn't handle it. The nights I've not slept, not because a child kept me awake, but because I was overcome with fear and anxiety and guilt and wrestling with the ugly possibility that for our foreseeable future, all of these negative things are simply on repeat...
I focus instead on what my children CAN do. I put out to the public the good times, the progress, the first times, the funny times. I choose not to wallow in the hard days. I choose to celebrate and build upon my children's capabilities, rather than their deficits. Sometimes, I share a hard day, a meltdown, an obstacle we're facing. But I do not post about every single one. (I'd have a pretty depressing blog and page if I did.) And though the autism community seems to be getting a lot of flack for this positive focus; when was the last time you read a blog post or social media story by a parent on how their 'typical' child was given detention, grounded for poor choices, or received a failing grade? How would you feel about a blog if a parent incessantly talked about their child's flaws rather than their virtues?
It's not an attempt at creating a 'false face' of special needs. It's a conscious decision to share things that build up rather than tear down, that encourage rather than discourage, that can be cheered on and not wept over. I'm not trying to gloss over our hard days, I'm just trying to not live there.
I want to show that we can survive, even thrive, despite days that drag us down. I want to show that you can be beaten, and get back up and overcome. I want to show that a diagnosis is not the end of your world. It is not the end of good times and positivity.
I want to put something out there that shows parents they're not alone. We've been there too. It gets better. We're there right now. It is hard, but it is also beautiful. We'll be there in ten years. It gives us hope and light for what is to come.
It's real talk. It's not an attempt to degrade or belittle our children by sharing details of our life. It's not an attempt to degrade or belittle your journey because we focus on the bright side of ours. It's about focusing on something good in my world and hopefully bringing good to the world of others.
If you don't agree, you have every right. But there's no need to judge, accuse, and attack. None of us have time for that.