The Invisible Mom
NOTE: Today is the start of periodic guest posts on Born Just Right to try to offer additional perspective and support to parents of special needs kids. If you’re interested, check out this post and fill out the form at the bottom!
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Many of you are about to be very jealous because I am happy to say that Jen is real life friend of mine. We met through our obsession with social media and quickly bonded over everything from our kids to our secret love of chick flicks. What I sometimes wish we didn’t have to bond over is being parents of special needs kids.
Jen in person and Jen on her site has been a huge source of inspiration for me on staying positive and embracing what life brings us. It’s something I admit that I need a lot of help with. My kids’ special needs are very different. They have what has been termed “invisible disabilities“. I liken our life to a Monet painting: from far away we look perfect but as you get closer it all starts to blur.
My four year old twins combined have a “typical” speech delay, apraxia, OCD tendencies, hypotonia, hypermobility, torticollis, fine motor delays, gross motor delays, sensory issues and social anxiety. Amazingly there is no official diagnosis, no overlaying cause, no disease that causes these issues in them. Instead just several strokes of genetic bad luck and who the hell knows.
When I think back to my pregnancy, I can’t find anything wrong with it. It was amazingly easy, especially for twins. Besides bad nausea early on, I had no issues and in fact had to be induced at 39 weeks. The girls spent no time in the NICU and came home after two nights at the hospital. Every time I recount all of this to another therpists, doctor, school system, I wonder what went wrong.
So yes, I stuggle with acceptance. I have a hard time explaining to our family that yes, there are delays and causes for this, because I sometimes question if there really is something wrong or if I am just jumping on the bandwagon of putting labels on every kid. Their struggles break my heart and sometimes make me impatient and short with them. And then I look at my beautiful kids and remember that they are perfect, that there are all kinds of perfect. And I resolve that I will do anything to make sure that these challenges, whatever the cause, don’t hold them back.
I want to thank Jen for letting me share her space. On Tuesdays I plan to tackle the practicalities of parenting special needs kids as well as the highs and lows. And just plain funny moments. I hope you will join me on the journey.
I really appreciate you joining in on Born Just Right. Your views are important and I’m glad you can help me (and so many others) understand this invisible world.
I can definitely appreciate this. I worked with children with severe disabilities that we not invisible when I was a nanny. I relied on this at times, at restaurants and movie theaters. People who would get annoyed at us, I would look at them and wait for them to assess the situation and realize that we needed a little extra help from time to time, and in general I never had to explain. I can imagine it being much more difficult to have to explain or inform people constantly.
I actually don’t think any of us have to explain our differences. I’d rather we live our life, raise our kids to the best of our abilities and show people that we can all live as normal as possible. If there’s an outburst, there’s an outburst. Of course it’s hard to deal with as a family unit, but I don’t think we have to explain ourselves in the aftermath of a public challenge. Society makes us feel like we have to explain, but I think we all have a right to continue to live and exist in public without have to explain every detail.
I’d be interesting in hearing what others think… I know as a parent of a non-invisible challenge, my life improved greatly when I stopped feeling responsible to constantly explain Jordan’s differences.
I agree with some of what Jen says, I don’t feel like I have to explain. Sometimes I do when people are looking at as nastily or they make comments. But in general I feel my kids should be free to be who they are. I don’t want them to feel different. We all have our own quirks.
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