Sunday, October 25, 2015

Autism Parenting is Lonely

There is just no other way to say it.

Parenting (in general) can be hard enough.  Parenting special needs children can present a whole new slew of challenges.  You have to be creative in a million different ways, develop and use more patience than you ever thought you were capable of, become an expert in therapies you never really heard of before diagnosis and face challenges and scrutiny when you go out.  We prepare the kids every time before we go out to a restaurant with the rules of conduct. The older ones mostly get it, but Acroboy still needs to be coached EVERY SINGLE TIME.  And I'm lucky because I can take them to restaurants and public places, because others I know are not so lucky.  I'll stop there for now.

It's difficult for friends of neurotypical kids to understand all this.  After years of working with my family (and tremendous growth on my kids' part) my childhood family are beginning to really see the awesomeness of my kids, and understand the challenges of how we've gotten to where we are.  

As a mom to special needs children, it hurts when your child(ren) don't get invited to parties because of their mannerisms and quirks.  It also hurts when YOU don't get invited to things because of your children and/or the schedule you have for your child(ren)'s sake.

I found out recently that a good number of women I had considered as good friends (and not just acquaintances) have been participating in a "supper club" for years.  That's really not the big deal here.  I'm realistic and as much as I enjoy cooking, it's challenging enough to make a homemade meal that will please and satisfy the bulk of my six children.  We have sensory and texture issues, and I feel like dinner is a victory when everyone has eaten something and there have been no major meltdowns or accidents.  It would challenging to find time with our schedules once a month (every month) to make a completely from scratch dish to share.  And the night of the week supper club and book club are on is a night I've got multiple activities for my children and this creates logistic issues.  Recently I've been able to attend an adult ballet class on that night, and it is a reconnection to something I adore.  That creates another logistical conflict.

I've actually known about the supper club for a number of years.  I was not aware 1) it was still ongoing, 2) how large it has grown and 3) that they often invite someone to participate for the month as a substitute.  

I've lived here 7+ years and never been asked to participate.  Not once.  Nada.  Zip.  Zero.  Even though I have several dishes people have asked for a copy of the recipe. (Would they do that if I stank at cooking?)

The thing that hurts the most is that the supper club has decided to make an exclusive trip to a large city to see "Broadway Show".  A mutual friend who had moved away is coming back just for this trip.  I won't see her or visit with her because I was not invited.  

We try to be social.  We throw large Independence Day and New Years Eve Celebrations.  We try to have other times we have smaller gatherings.  We try to be gracious hosts and guests.  I work extra hard on manners and social rules with my children.

The last time we were invited to anything other than a church event, baby or bridal shower was dinner at a home two or three years ago.  

I was told by a friend who has "subbed" at the supper club perhaps if I had shown up regularly to the free exercise class I might be invited to more things.  The problem with that was last year they cut out Fridays and only offered it on Mondays and Wednesdays.  Monday morning was the ONE day of the week I had to go through my inbox, catch up on things and prayer for the week as a whole.  Wednesday I had a small social group I took BabyGirl to for some of her social anxieties.  With no Friday class, I couldn't make it.  I didn't make it over the summer because of the classes activities and parenting I needed to do with all six kids being home.  

I'd like to give them the benefit of the doubt and think that maybe, just maybe they thought about asking me to join the big city trip.  And maybe, just maybe they figured I wouldn't make it because I do have a full schedule with six kids.  

It would have been really nice if they had just asked.

But they didn't.


I have served with these women, cried with them, laughed with them and at times even mourned with some of them.  I thought they were my friends.  I thought my family and I were accepted.  I thought perhaps we hadn't received any more invitations because we were such a large family, and there aren't many of those anymore.  

I try, I really do try to be kind and loving to everyone.  I know from past experiences how much it hurts to be left out.  

I'm still being left out and it stinks,  

I don't know if it is me, or my family or a combination of both.  

Part of me wants to say, I've got to try harder.  There must be other who are feeling left out too.  

Part of me wants to give up.  Why does this keep happening where I run into women who shun my company. What's wrong with me?  

I was once passed over for a book club because they were only asking women who they thought "would contribute to the conversation."  Yes, I'm sure my bachelors degree, teaching certificate and love of literature leave me with absolutely nothing to contribute to a group discussion.  

I don't want to be anyone's pity invite.  I want to be loved and accepted as I am, flaws and all.  (And imperfect family and all).  I want to feel like I belong.

Maybe this is all my fault and I am a really stinky friend who no one but a few rare and generous-hearted individuals want to hang out with.  Maybe I don't listen enough.  Maybe, just maybe I have a more mild form of Asperger's (and I've never been diagnosed) so I'm missing some major social cues.  

I still want to feel loved and cared about and right now I don't.  

I feel lonely.  

I'm having a down day obviously.  I am doubting myself, and as I reflect upon all this loneliness I can only imagine how much more profoundly my children must feel it.  It makes me want to go Mama Bear.

I'm determined not to let this be the end of the story.

I hope that in sharing this someone out there with special needs kids will be able to relate and know she is not alone.  I feel your pain, Sister, I really do.

I hope that someone else will say, "Hey, (insert name) has a lot on her plate.  Why don't I invite her to (lunch, ice cream, movie night, etc)."  "What if we invited them to have a picnic in our backyard?"

I hope that someone who reads this and feels too intimidated to currently take action says to herself, "I'm going to expand my horizons and get to know (fill in name) better." Just so you know, we're not looking to unburden our whole lives upon you, or for you take responsibility for our most precious responsibilities.  We just want to have someone like us and spend time with us--not shun us.  I promise I can be a loyal friend. 

If any of these things happen I have done my job.  Autism parenting is lonely, but if we could each look past ourselves and our comfort levels, we could bring support for each other to a whole new level.  It wouldn't have to be lonely, it could be a blessing for everyone.

Reach out today.

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