In Search of Friends

Yesterday in my day job I met a 9 year old boy and his mom.  I had a fun conversation with him and learned he loved Math and Science but his favorite was Science. He hated writing, obviously. When he said "obviously" I laughed because my kiddo often tells me the same thing with the same tone of "duh, mom, you're an idiot." I shook my head in amusement as he told me his name, same as my kiddo, and went to tell me what services he has, what he likes, what he doesn't like, how he wants friends. . .Great kid.  Involved mom. He's doing well.  But he wants friends.

My kiddo wants friends.  Lots of my friend's kids need friends too.  I hear it over and over again.  I don't know the solution. I wish I could make it better, I wish I had the solution. I wish I could shake kindness and acceptance from other parents so those parents can teach the same warmth in their kids hearts. Social skills in school are often in a structured environment. And yet our kids, those who struggle with the social nuances, need the help in the unstructured environments the most- at lunch, at recess, in the playgrounds, in after school clubs, in sports, in any of those moments where rules aren't set in stone and vary. Teaching that skill is hard!

Meanwhile I'll just keep growing our local autism parenting club and increase our social events, i.e. Lego club, we're starting up a Family Game night club and a pre-school playdate club because I can control that.  I'll keep doing speaking engagements where I speak to other families who are starting in this journey or where I speak to education majors who need to learn the family's perspective. We'll increase social skills therapy and a friendship table program at school. Meanwhile I'll pray and hope that my son meets a kindred spirit, a true friend. Because we all want friends. True friends who get us and accept us just as we are.  

Ah-Ha moment in Target

I screwed up last week and my kiddo struggled with a new activity. I forgot to preview and honestly thought he'd be okay! It didn't go well and we left after 45 minutes of avoidance and anxiety behaviors.  I pushed him too much.

This week we unwittingly arrived an hour ahead of time with the only expectation that he do his best and that he willingly enter the building and do his best.

We walked around, helped staff set up, previewed expected routine, and then left for the day. Reinforcer was a trip to Target for some silly putty and slime. We went to Target early on a Sunday morning and the store was mostly empty. Those of you in the autism world (parent, caregiver, therapist, teacher, etc) understand that today was progress and a success. The goal is to attend a full class by week 4. Today was week 2.

In Target, we had an amazing  5 minute conversation where he gave me a glimpse of what it's like to live his world. Those conversations and those glimpses are so precious and at times, like today, so heartbreaking as his mom.

Kiddo: Mom, it's really hard for me. Everything is really hard all the time and some times I just don't like being me. I hate autism sometimes. I don't understand all the stupid rules and some times I can't be good!

Me: That's okay to feel. There's nothing wrong with feeling like that. I don't like struggling with eating all the time and sometimes I hate my achalasia too. (I've got an esophageal autoimmune disease and the kids know.) Remember we do our best. If you make a mistake, you're not bad. You make a mistake, you say you're sorry, and do your best next time. I make mistakes too. What happens when I make a mistake with you guys? (He thinks about it but stays calm).  I always say I'm sorry after I calm down. I promise to do better next time. I ask for help when I need it. Remember how I ask you guys to remind me that I need a time out? (we're working on identifying emotions and self regulation needs for everyone). Then we hug it out, right?  He grins and says it's his favorite part.

He gave me a hug and we went on to the video game aisle where I watched him play Mario.
I don't know if I answered his question or problem right. I hate I can't fix it. I'm so proud that he was able to articulate what he was feeling and his frustrations. He hasn't always been able to verbalize emotions and needs. There's been times when I haven't understood and he hasn't been able to communicate. Countless times we have had to leave somewhere with him in a meltdown or shut down mode. I love that he allowed me the opportunity to glimpse into this moment in his world.

I know it's hard for him. I don't want him to hate his autism. But I recognize that anyone with a disability has days where they're just tired of that disability and that they do feel like they hate it.  I have those days when I hate work! I have days when I hate my own disability. I understand. I also don't want it to affect his self esteem. So I promised myself to do my best as I navigate parenting.

Next week I told him we're going to stay for class. His reply? "Ok but can we go to the arts and crafts store next week?" I wonder what conversation we'll have next week between the bargain bins and clearance?

PA Ballet 1st Special Needs Clinic

The PA Ballet held its 1st Special Needs Clinic recently. In April the Walnut Street Theater is hosting a sensory friendly show free for kids with disabilities. In Philly, the special needs community is very hopeful that it is a sign of things to come in Philly.  Making the arts as inclusive as possible, especially to kids, is a wonderful thing! I hope the PA Ballet makes this an annual event, I know they hope to!

C looked anxious and scared throughout but said she had fun.  A had so much fun that I had to carry her to the car afterward. They came home asking to go to the next ballet class! I really appreciate everyone's hard work into making this day possible.  The girls are going to make thank you cards and mail them out to each other their dance teachers.  Staff and dancers from the PA Ballet volunteered their time for the clinic and I think a thank you note is something the girls would enjoy making and should learn to send.

It was hard to tell if they or I were more excited.  Of course I took tons of pictures.  I may have even been teary eyed.  It's nice when something you always hoped they'd be able to do actually happens.  Lesson in all this is that sometimes things happen when they're meant to happen, maybe a bit different than how you'd envisioned. Just keep trying.