Okay - I Can Talk About It Now

Autistic Teen Meltdown, or: What Happened on Thanksgiving 

So, we had complete #HOLIDAYFAIL this year for Thanksgiving. Still conducting an internal investigation as to why, but pretty sure the usual suspects (relative's house, with barking dogS, and more people than he was prepared to deal with) plus teen hormones that felt tired of being bossed around during his holiday week at home, noise, plus pressure to take a shower all combined into a huge, LOUD, meltdown in front of family, across a golf course (he eloped and I got him back, which set off the screaming and yelling), into the street, and in front of a friend during a food drop. 

It was awful. 

This was the first time my family had seen what a meltdown looks like from James. The stress in keeping calm to manage the meltdown, the embarrassment of the outburst, the pain of seeing my family want to help but not sure what to do, and finally the realization that I just had to take him home and there would be no dinner with the family this year overwhelmed me and I started to cry, which freaked James out. Because as a rule I do not cry during meltdowns (where he can see me). It just doesn't help.

This time, some of the things he yelled at me were extremely hurtful, so I let him see me cry. So now remorse was added to the mix. "I'm sorry, I didn't mean to" came after each tirade. 

When we were home and things calmed down (reassurance that even though I did not like the behaviours I still liked him, being in our quiet home, and cessation of crying), he gave me his version of a hug and said again he was sorry. I thanked him for that and then told him I needed some quiet time now. 

I also said there would be consequences, so no internet and very restricted phone time. I unplugged and hid the router, put his devices in a safe place, and the internet stayed off through Sunday. He earned phone time so he could talk with people. Having myself received the Silent Treatment on various occasions and having a pretty good idea how something like that would affect James, I wanted him to be able to talk with others while still letting him know the meltdown was affecting his privileges.

Oh the talking. We covered how feelings were neither good nor bad, it's how you handle them. The importance of communicating with people before a meltdown happens. Practicing phrases we can say to make that communication easier.

Without prompting, James wrote apology notes to myself and other family members and delivered them personally. When he says he is sorry and didn't mean to, I believe him. I love him to pieces. I also knows that his life will be a lot better if can realize how his actions affect others and he makes it his priority to better manage them. 

Today is Wednesday - it's almost been a week. I can talk about it now.

Some good (IMO) links for understanding meltdowns (and no, I have no affiliations with any of these - I looked at the posted content and thought it was very appropriate for our situation):

• Autism Speaks' Challenging Behaviors Toolkit
• Autism Speaks' Blog Post "10 things that helped me during meltdowns as an autistic child"
• Toolkit to understand behaviors, from Autism Speaks
• A guide to meltdowns, from the National Autistic Society (UK)
• Blog post on Autistic teens and meltdowns, by New Focus Academy
• Article that does a good job addressing meltdowns and what to do after, from the Raising Children website (Australia)

Isolation - How You Can Help

I have written a lot about the negative emotional impacts of isolation that comes with being a parent of a child who is autistic. The isolation saps already low energy and makes it easy to get locked into patterns - sharing and communication with family, friends, and the community require constant and costly efforts.

For us in the suburbs past the 2nd grade, if my kids were not doing the same programs as other kids, they were locked out of social events like birthdays and get togethers. Parents hesitated about coming over. The friends that we made seemed to move out of town. 

Former friends were great to see at reunion events. Because of sensory overloads, developmental delays, and communication challenges (not to mention eloping), I could not engage completely with my friends and kids. There was friendly interest in our lives, but it was often not deep.

The older we all got the more I noticed the lack of people being able to slow down and break things into smaller parts. I would have been like that too, if not for my kids. 

Here is something new to consider for Autism Awareness Month: Do you have friends or family members affected by autism? Are they still important to you? Consider doing the following:

• Initiate get togethers and persist if they get canceled at the last minute. Be prepared for a slower visit and instead focus on time together.
• Please don't try to share inspiring stories or new treatments you heard about. Ask questions instead to learn more about what their life is like. 
• Volunteer to contact representative to protect services or bring awareness to housing, education, and personal rights issues.
• Please share news about mutual friends and interests - photos are great too.
• Consider your affected friends and families when planning social or other events. If the planning does not work out initially, consider adding a new one later one that can accommodate a slower pace and avoid triggers.
• Find a way to keep impacted families and friends in your life - send a postcard, share a recipe or joke, or send a text if you see or hear something that reminds you of them.
• Try being a pen pal (you or your family/kids) - everyone loves getting mail and sometimes being able to practice writing as a truly social experience can be fun for our kids.
• Contribute to non-profits that help families impacted by autism. In our area, this includes:
•  Matrix Parents Network
• Anova Center for Education
• the Early Learning Institute
• Rotary Club of Healdsburg Sunrise
• United Cerebral Palsy North Bay
• Common Ground Society.

Please don't be afraid or ashamed to try something new in including impacted friends and families - we do it every day and learn to roll with it/through it. We assure you there is a heady sense of accomplishment for at least trying. We'd like to have your company.

This is What It Looks Like

I and other parents talk quite a bit about how how things that are straightforward for other parents often aren't for us, and about how that makes us feel isolated and saps our energy.

 This is what it looks like -- waiting 15 minutes as the entire school parades around a 1/4-mile circle to see your child in the Halloween Costume Parade:

... only to realize your child is not there. Other full-inclusion kids are, but yours isn't.

I tried not to feel hurt and reminded myself it was time for his speech session, which is very important for him. Still, it was a sinking feeling.

This is your son when you try to help out in class. He's way in the back of circle time, freaking out and crying, because Mommy only comes for drop-offs and pickups and now she's Right Here in the classroom. What The HECK Is Going On?

I expected this and remained calm. It's hard, sometimes. Especially as I've helped out in classrooms for my daughter and never got this reaction.

Lest this turn into a pity party for one, this is what it looks like, when your child on the spectrum adjusts to having a parent pop up unexpectedly and join the school day.

... because his teacher and aide also remain calm and welcome all parents to help out in the classroom. Here is James, doing the craft project that I was running during their Halloween party. He made a treat bag by writing his name one it and then stamping Halloween designs on the front and back.


And this is what full inclusion can look like:

Two guys sharing free time together. Having fun.

These are the times that keep me going.

100 Days, From a Distance

This week, Jame's school celebrated the 100th day of school. Because his school contains only 1st and 2nd grade classes, they make a huge deal about this. No kidding -- there are signs everywhere, welcoming all to the 100th day of school. Parents are encouraged to volunteer or drop by to share the special day. Classrooms set up to do crafts, games, and activities. The most popular is the goodies gauntlet, where kids get to pick 100 pieces of their favourite snack foods.

I was excited that James was getting to be a part of this, because it made him a part of our community and would have a shared experience that his peers would remember and talk about in later years. I was also hesitant, remembering what happened when I showed up at the Winter Singing Festival.

Sure enough, James was confused as to why I was staying in his room with him, once school started. He started to look anxious and then began to cry. He could not stay seated or still. He kept rocking on his feet or popping out of his chair. He was trying to make sense of it all, asking me things like "Mommy? You stay in in the room?" and "Mommy, is time to go home now?" and even "Mommy, you go outside?" His distress was acute. I could practically see the synapses short-circuiting. Poor guy!

I felt blindsided and isolated yet again by autism/sensitivites. Then I sighed (I do a lot of that) and tried to think about how to handle Right Now. I tried explaining that it was okay, I was just visiting and he'd get to have his whole day at school. No go. It didn't help that his teacher's well-meant urgings to me to "stay in the class, because he will really remember my being here and it will matter to him" added to the confusion. I think his teacher was right, but all the talk and confusion was ramping up both his and my anxieties.

I finally decided to hang out in the background, helping to take pictures for the teachers and assisting the moms with minor clean-up and refills. Every now and then I'd swing close to James, tell him "good work!" and take a picture of him and his classmates before fading back again. Lather, rinse, repeat. And sigh.

Once back home, I tried to review what happened and think about what would have been a better approach and how to do it better Next Time. I thought I should have done a social story about 100 Day at school, so we all could have gone over it in advance. But, I realized, I never thought I'd need one because I'd been with James in a classroom when his SHAPE assistant could not be there, so I could sit by him and help. He used to loved it when that happened. Why has my showing up at school suddenly become a problem? I can only guess that before the school was smaller, quieter, and more structured that his present school and class. Also, James is "waking up" more to his peers and environment. I know he can get over-stimulated, especially when it gets noisy. He is also getting more fixed with his routines than before.

So the best I can come up with is to keep trying to help out in the classroom, largely staying in the background until he gets more comfortable with seeing me there. And do a Social Story for the next time there will be a big school event. Boy, is this frustrating!

I remember my daughter's first 100th Day celebration. I had to come late (because of problems with James' school bus) and by the time I found her, she was off to the side of the room and crying silently to herself. So we sat together in a quiet corner and then worked our way up to doing a few of the activities. She stayed away from the noisy and crowded areas as much as possible and did not want me out of her sight.

I get a little discouraged, you know? Because I see all these other kids just having a ball. I know it's not that simple for everyone, but sometimes it really feels like it is for everyone but us. And here we are again, participating in life, from a distance.