Autism Misunderstood - not invited

We didn’t get invited to the party…

I’ve been doing a lot of reflecting lately.  In retrospect, it’s much easier to understand those defining moments I didn’t recognize while they were happening. So, reflection is an important part of my life.  I use it to learn from my mistakes, keep doing the things I am doing right, and plan ahead.  Last Saturday, I wrote about why Autism Is Hardest On Saturdays. I know that I’ll reflect on these Saturdays, one day. I’m quite sure I’ll miss them.  It’s ironic, because Saturdays can be lonely, difficult, and a painful reminder of how different we are. This Saturday, someone proved my point! Normally, I wouldn’t share these private moments on this site, but I’m sure I’m not the only one to experience this little heartbreak.  I hope that sharing it will help people think twice before making the decision to exclude kids with special needs from events.

First, let’s reflect a little…

When the triplets were born, I breastfed TWENTY FOUR times per day! Yep. I had three babies and they each fed every three hours, which was eight times per baby, times three, was twenty-four feedings, per day! But that’s not all!  Since the babies were micro-preemies, I had to supplement their meals with high-calorie formula.  So, in addition to breastfeeding them, I pumped, supplemented breast milk in bottles, and fed them AGAIN.  You can look at that as 24 long feedings or 48 short feedings per day.  PER DAY! It remains a blur! I still had to feed my older children, hungry husband, and attend to all the rest of the household chores.  I didn’t have any help.  Through no fault of their own, I didn’t have a mother, sister, or friend who was by my side in those trying times.  No one brought me a meal so I didn’t have to cook for the family.  Laundry was piled up to the roof but no one stepped in to help. Even when the triplets were in the hospital, friends and family were so busy with the demands of their own lives that the triplets rarely had a visitor who wasn’t me. I lived in the hospital, leaving only to cook for my older children, get them to bed, and take them to school in the mornings.  I’m kind of tired of pretending that just anyone could have done that. NO.  Not just anyone could have done what I did during that difficult time.  Shoot, I still don’t really know how I did it!  My point? Well, at any moment, I could have just collapsed.  I don’t know how I didn’t.  It was hard and I was angry.  This is the first time I’m admitting that I was angry.  The triplets are almost five years old now, and I’ve done pretty well by them. I even got over being angry with the rest of the world.  Then, someone stirred up some emotions and I’m feeling pretty angry again.

In the past, we attended those Anti-Autism Parties… (parties parents with children with Autism dread)

During the triplets first two years, I was always worried about their health.  There were so many reasons for me to worry.  My first worry was always about them getting sick.  They were still so small and fragile in my opinion.  Between the ages of 2 and 4, we tried to be more social.  One of the birthday parties we attended caused me to break down in the middle of Chucky Cheese! The triplets were about three-years-old.  They were walking but not really talking yet.  Kaitlyn hadn’t outgrown her triplet brothers so much yet so they still attracted a lot of attention, since people quickly recognized them as being triplets.  There was a lot of extended family and people I didn’t know at that party.  I was in a complete panic.  Every time I turned around, someone new was holding one of my babies.  I felt like I couldn’t keep track of them.  I didn’t want to be rude but I was so overwhelmed.  Kids were dropping tokens all over the place.  There was food all over the floor.  It was loud and super crowded.  My kids were very likely to stick ANYTHING in their mouths, eat food off the floor, and wander.  I smiled as I tried to hold it together, but at some point, I just couldn’t! I asked the hostess to keep an eye on them for  three minutes and I went outside and balled my eyes out.  When I returned, I tried to explain my little breakdown to the host.  I had already begun crying before I was able to run outside.  I felt like no one understood.  Their kids weren’t like my kids.  They just weren’t.  The hostess was as gracious as she could be and offered to spend some time with me and the kids in an enclosed area of the party.  She did everything right, but it all felt so wrong.  It felt so awful.    We left shortly after. I knew how hard it was to keep my kids safe in a crowded and unfamiliar environment.  The hostess was wonderful, but I was scarred.  Soon after, I began to decline invitations to crowded parties in unfamiliar places.  Nothing was easy.  I wish I had some magic words to make my fears clear and understood.  I guess that’s why I work so hard on improving Autism Awareness.  Because, right now, it still just feels like Autism Misunderstood! We want to participate.  We want to go to birthday parties.  We want to be invited.  We want to have fun, too!  Yet, I continued to decline invitations.

Eventually, we stopped being invited to parties…

We had already agreed to attend the birthday party last Saturday.  We didn’t have confirmation of where the party would be or the exact time, or even the exact date, but we’d made it clear that we planned to attend.  On Thursday evening, I talked to the hostess about random stuff.  On Friday evening, I talked to the hostess about random stuff.  On Saturday, I called the hostess but she never answered.  There had been an emergency event in hostess’ family so I didn’t ask specifically about the birthday party.  I figured it was on hold  due to the family event.   I’m usually so busy on Saturdays, but that wasn’t the case this Saturday.  Pedro had only one game.  Antonio didn’t have any and spent the day with a friend.  My husband was out doing guy-errands most of the day.  After Pedro’s game, I drove around with him and the triplets, with nowhere to go.  Eventually, we just went home.

The excuses are insulting and outdated…

Sometime Saturday night or Sunday morning, I’m not sure when, my oldest son, Antonio, saw birthday party pictures on Instagram.  Pedro was furious.  I was livid.  Today,  I confronted the hostess because I was that hurt!  In fact, so did Pedro.  He didn’t hold back his feelings about us being excluded.  The hostess’ (for the record, not the same as the Chucky Cheese hostess) first reaction was to joke it off.  Pedro wasn’t having it! Then she tried to say it was last minute.  Yet, everyone except us was told when and where to be!  Ironically, we live the closest to where the party was held.  Then she said it’s because we never go anyway. I had gone on and on about how excited I was that the party was being held at a place that isn’t so crowded, where the triplets would really have fun, and I wouldn’t feel so incapable of keeping them safe.  I was really looking forward to sharing a typical Saturday with the kids. Finally, the hostess told Pedro that she would stop by to drop off some chips.  Ugh! Pedro doesn’t need her chips.  He gets frustrated with all the things he can’t do, because of the triplets. He needs her consideration and respect! If she can’t give that to him, to the triplets, to us, then she can bury her excuses, as deep as the depth of her ignorance, and take us off the invite list for good! 

Maybe people decline for a reason…

If you know a family with children with special needs, I urge you to consider that there may be concerns you aren’t aware of.  Maybe the family says they are going and they don’t show up because the day just falls apart on them, even though they plan to attend.  Maybe they decline, because they fear being able to make it through the event with out embarrassing themselves or the host.  Maybe there is nothing more they’d like than to participate, even when they can’t, and your invitation makes them very happy.  Maybe, living a life that so frequently excludes them from doing normal things, makes them feel bad.  Maybe, your continued invitations are something they look forward to, every time.  Maybe, they aren’t just the jerks who don’t show up.  Maybe, there is nothing they’d like more.

 

By:  Alicia Gonzalez