Raising special needs children can be a lonely business.
My immediate family and friends are amazingly supportive and do their best to understand. But sometimes when you need to talk about really heavy stuff or just really gross stuff that autistic kids do it's hard to relate to people who don't live it.
Lots of times people will say "oh all kids do that". It is technically true in some cases and I completely understand the intent with telling a special needs parent something along those lines. People really want to make you feel better and they say it so you can feel like your kid is doing something a neurotypical kid does.
The difference in an autistic child is that they may do that specific thing fifty times in an hour or have a really hard time transitioning or in the worst case scenario have a meltdown that becomes out of control. You see, the actual thing by itself isn't always terrible, it's just that this behavior is exacerbating a parents very deep feelings of stress. Depending on the day, the behavior can make you sad or mad, embarrassed or just hopeless. It can be the proverbial straw that broke the camels back.
So when a person says all kids do that particular thing it basically shuts down any helpful conversation and downplays the serious emotions that accompany these situations.
And I get it, it's hard to know what to say sometimes. It's just an example to illustrate how hard it can be to relate. It's really a sticky situation on both sides because no one wants to offend and I myself don't want to be overly sensitive. Knowing that people are usually good at heart and doing their hardest to be kind is understood. It's just the reality of our situation and it gets murky.
My best friend has always been easy to talk to about the tough stuff.
Late last year she moved out of state and left me missing my coffee buddy. She spent a lot of time with us and the boys and totally got it. Since she was a nurse it was ok to talk about scary or gross stuff because honestly, nursing can be both a lot of times. When she left a lot of emotional support left, support that you can't quite replicate over the phone. Over time I've started branching out a little in talking to other autism moms, doing a moms night out and having coffee with a few that live in my town. These women have been a lifeline of sorts, they deal with the same school districts, the same doctors and school psychologists and IEP teams. The insight, support and ideas are really invaluable.
We also joined a special needs soccer team that E-man participates in on the weekends. Having activities in our community with "our people" is great, seeing kids and families of all abilities is in it's own way validating our lives and experiences. We really aren't alone.
The online autism community has also been helpful these past few months. In the same way that soccer validates my feelings, a mom on twitter getting excited that her kid read aloud or another mom who is lamenting a tough day makes me feel less alone and less ashamed that I get mad, sad, angry or frustrated with my kids.
My friend leaving ended up opening me up to people and experiences I may have missed out on if she hadn't left me for the Big Apple.
It's a true blessing in disguise (and now I have a really good excuse to visit New York!).
It looks like my world is becoming a little less lonely and starting to feel a tiny bit bigger.
