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.

Happy 7th Birthday baby boy

Every year I write my baby boy a birthday letter. Someday when he's older and I'm gone, I want him to have these letters so he can remember how much I'll always love him and that I did my best. 

Dear JD:

Today is your 7th birthday!! I love your birthday, because this day is all about YOU! Wonderful you!
I decorated the house and judging by the looks your dad keeps giving me, I may have gone a tad bit overboard for a non party birthday. I hope you love it in the morning. I tried to build you a minecraft super mario world.

We always know exactly where we stand with you, its one of your best features. Your dad might say its one of your most exasperating features. As much as I love the brutal honesty that sometimes comes out of you, daddy is right. Some people in the world are not nice or accepting of everyone. Some people are taught to hate and be mean. Some times we can keep some of that truth inside us, thoughts only in our heads or with just family. I hope you find a way to perfectly balance living in an imperfect world and always being yourself. I know that can be hard but you should be proud of yourself, I know I am very proud of you.

I hope you grow up and continue discovering that next great discovery or doing another great experiment. Maybe its not a Lego master builder or maybe it is.  Maybe its an engineer or architect, a graphic designer, a coder or programmer or maybe a chef. I see such strengths and possibilities in you and they are limitless. If life happens and we have to make adjustments along the way, I know I'll be okay because you'll be at times be my encouragement, my inspiration, and as always my baby boy.  I know you'll be okay because you have such strength and determination and with some awesome little sisters as cheer leaders, we HAVE to believe in you! Although I will say I'd prefer that you learned to compromise a little more and hope your sister grows out of that screeching scream.  Never ever feel you have to make yourself less for someone in this world.  Shine as bright as you can- which means that I want you to be your best but mostly I want you to be happy and kind baby boy. (Yes, I know people can't actually shine unless they put some shiny lotion on them. Yes, I know you don't like lotion. No, I didn't mean you had to put lotion on. I was being silly again. Sorry.)  Mommy loves you JD. Just remember that. I love you no matter what. And so does daddy. And so do your twin sissies.

The kiddo in Wonderland. . .

We took the kids to Dutch Wonderland in Lancaster, PA. It wasn't too crowded. They have an Autism program! Just ask at the ticket booth and they'll give you a special bracelet. You don't have to show proof or anything. It's a "special needs" program so not just autism. No wait in line, go up the exit side and show them the bracelet.  Just like that.

Some suggestions:
Bring your own food and they have a picnic area where you can eat. Use youtube to show your kid videos of the park to "preview" the day and manage anxiety of the "unknown" and "new". Wear your swimwear or clothes that dry fast if you plan to get on the water rides. If you plan ahead you can buy discounted tickets at their website or at some grocery stores. If you buy the kids coupon book, there's a coupon in there. Or pick up a coupon at your local dunkin donuts.


We were waiting in line. I told him to show his bracelet and he asked about it.

Me: "Autism perk! You don't wait in lines when you show that."
Kiddo: "What's autism mean?"
Me: "It means you're special."
Kiddo: "Because I'm different?" I nodded. He replied quietly: "Different isn't bad."
He smiled up at me and then got on the ride.

You had to lay down on your stomach and hold on to the bars and then you're caged in as it spins you around in the air. I was mildly terrified. He had the biggest smile and looked utterly relaxed. It was amazing watching him experience the rides all day long. He loved the spinning, the roller coasters, the big super slide. I love this boy so much. I learn so much from him.

Kiddo: "Were you scared mami?" I nodded and smiled. He grinned, squeezed my hand and said: "It's okay mami. I still love you."

Mean Reds. . .just like the blues only worse

This is ME today. Yes, it is!!

Today is an I Hate day. I try not to have too many of them. Somedays it gets overwhelming and you either vent or cry. I hate to cry.  Let's add that to my pity party.

You know what gets me?

Hearing my little girl fall down the steps because her legs got so weak she simply couldn't keep up and then the bang as her head thudded on the floor, watching the whole side of her face swell and redden from it-- let me tell you that is fear. That is anxiety, stress, and want to cry right along with her flippin fear.  She's fine by the way. Thank God for hard heads and carpeted steps.

Watching her temper tantrum because she can't pronounce a word even though she could pronounce it yesterday, this morning,  or even a minute ago. Watching her struggle to find a replacement word.
Or watching her refuse to speak or to try because she knows its a bad speech day.

Watching her run to the nearest trash can or toilet bowl to regurgitate or choke on food because of the low muscle tone. All her quirky anxiety and sensory needs which make it hard for her to fit in with her classmates. That is flipping Apraxia and Hypotonia.  You wouldn't know her struggles unless you lived with her. Most days she's this silly, quirky, social, happy, and determined little girl. But I know her struggles, I watch them all. It hurts my heart so much to see that struggle. And so somedays when she's mastered a pronunciation or running through the playground, I may cry even as she giggles. Because I have been there during all those struggles.


I worry about my son. Will he be able to live independently, will he find his "place", will he be able to "cope" . . .currently he can't dress himself. I'll find him humming in his bedroom, building legos, buck naked because he's become so distracted that he's forgot to finish dressing. He needs constant prompting and reminders. If the routine changes, as it has this week, he'll struggle behaviorally. He'll hit, throw, yell at the tss, at me, the teacher over some minor thing because the schedule change has him so overwhelmed. Somedays its sensory, other days its anxiety, some days its not wanting to do a non preferred activity. And other days I have no idea why.  Today I picked him up and he was already triggered, upset over something silly. I had to remind him to take deep breaths, to use his words, to calm down. A promise of an afternoon with the ipad while my poor girls trailed after us close enough that I could grab them if I needed too but far enough away for safety should he begin to hit or throw. We walked to school even though it was pouring rain because the change from being a walker to riding the car loop sometimes sends him into meltdown. So we walked, even though curb side pickup would've made more sense today. On Sunday he had a meltdown at Target with my husband. Over playdoh. He was so fixated on getting playdoh that he went into meltdown mode.  I can just picture him kicking, screaming, throwing, as my husband carried him to the car.  Been there dear Hubby, lots and lots. Yes, that is our reality. And my worry is will he ever be prompt free? Will he be okay without his aide?  Who knows. Will it ever be painfree for him to transition from a preferred to non preferred?  Who knows. F you Autism. F you anxiety. This is "high functioning autism" and yes I want to make it better fo rmy kid. Who the hell wouldn't?

I know things could be worse, I know it'll be okay. I don't need comforting or a band aid to sooth it away. Today I just need to vent. Today I'm feeling sorry for my kids. I'll be fine. And so will the kids. And now I must run because dinner is late and I've got an hour before hubby is home to put this house back into shape. . .

Stuck in the Middle

This post has been in my head for a while now.  I just haven't had time to write it. The chorus from U2's Stuck In A Moment plays out in my head every time I think about it.


Two months ago JD and I rushed to a bi-annual psychological evaluation to continue his 1-1 support. It was with a familiar psychologist but a new place inside one of the oldest mental health hospitals in the country, established in 1813.  As we walked through fabulous architecture of the past, I couldn't help but shudder about the likely ghosts still lingering in that place.

The psychologist commented on something and it exactly describes the "problem". He said: "[H]e's stuck in the middle. This gap between (autism) kids needing more support and mainstream kids. He's absolutely in the best (educational) setting, the worry of course is how do you get out of that gap?" 

Have I lost you?

Earlier this month, JD was denied admission for an autistic support therapeutic summer camp. He's too high functioning for an autism only setting and not high functioning enough to be in a typical camp. In a typical camp, the teachers are not equipped or knowledgeable enough to work on social skills, sensory needs, etc. I could raise my ire up and passionately defend my child's right to a summer camp. But honestly it is not that important.

So what do you do when you feel like you don't fit in?  He's frustrated when in an autistic support setting because he's not patient or as accepting with his classmates challenges whether it be stimming, communication issues, or just no interest in a mutual subject matter. In a typical setting, he's often subject to teasing or bullying (that's a separate issue we're managing with the school) or the kids just have no patience with JD.

Its frustrating to be so close to "fitting in" and closing that gap. I also want to teach him to be patient and tolerant. I am grateful for the progress and maturity JD has demonstrated this year. I'm stuck in this journey as his guide and I worry about his future. But I recognize that for now, the gap, isn't a bad place to be in.