being an autistic parent with SPD

I'm a "huggy" person. I don't go up to people and hug them without their permission, and I only want hugs from close friends or family when done on my own terms, but I am indeed a very physically affectionate person. Just ask my husband, who is forced to deal with my constant need for snuggling. It came as no surprise to me that when my son wants to show affection, he is also a very physical individual. There is nothing wrong with that, we have just had to work with him on when it is appropriate to give hugs and kisses and when he needs to keep his hands (and lips) to himself. He hasn't figured out that some grown men are uncomfortable with kisses from a little boy, and he seems to think hugs and kisses with "new friends" that he just met are totally acceptable. It's a work in progress. Overall, it isn't too big of a deal, since we keep a close eye on him and help redirect with more appropriate parting sentiments when hugs and kisses aren't ideal. The only time it becomes a problem is when he is sick...

Right now, my kid is sick. Because he is sick, I have kept him home. The problem is that like most kids, Johnny becomes much more "cuddly" when he doesn't feel well. In the past 48 hours, we have spent A LOT of time together, just the two of us, and even as I type this he is literally hanging on me and -- yep-- there is another kiss. I have received at minimum 1,000 kisses today. No one would usually consider this a problem, (aside from the obvious germ-passing issue, but you figure that two people in such close proximity would have plenty of germs spread between them, regardless) but just like my son, I have Sensory Processing Disorder. I cannot stand for people to touch my face. This seems in direct opposition of my professed physically affectionate self, but kisses are different than hugs! KEEP AWAY FROM MY FACE!!!

I'm trying very hard to cherish all of the kisses, as I know the days are numbered before he stops wanting to give them to me. However, as we reach the end of day 2 in cuddleville, I am really struggling with the abundance of kisses. This isn't a hardship of autism parenting: what "normal" parent would be upset with getting kissed so much by their adorable child? This is a hardship of being an autistic parent. How do you tell your child to STOP showing you that they love you? You can't. So I am gritting my teeth and steeling myself against it and doing everything in my power to not get upset when my son kisses me over and over. I know it sounds ridiculous, but just picture that one thing in your life that makes you the most physically uncomfortable and have it happen repeatedly ad nauseam. The sound of nails on a chalkboard? That insanely itchy tag in your shirt that you can't remove until you get home? Someone stepping on the back of your feet, giving you a flat tire with every step? That person who won't stop tapping their leg/hand/etc. in an all-day meeting? The kid kicking the back of your seat on an airplane? None of these even come close. It makes me feel horrible to say that my son giving me kisses even remotely like such annoyances, but after the first 10, I have a REALLY hard time with it. If he wasn't my son, he wouldn't have gotten past the first one.

I have taken approximately 7 minutes to write this, with Johnny hanging off of my shoulder and interrupting every few seconds for another kiss. Total count since I started typing? 61. The boy needs to start feeling better soon... for the both of us.

social stories with angry birds

Johnny and I had a wonderful project to keep us busy yesterday. It started the night before, after he went to sleep, when I collected all of the things needed and printed/cut out the following template: "Don't Be An Angry Bird Book". I was so excited when I found this nice little social story, as Angry Birds are Johnny's favorite thing in the whole world and have remained his primary obsession for the past 2 years. What could be better than finding a social story that is relevant to his interests? All of the stick figure and horrible cartoon character social stories seem to not hold his attention when we have worked with them, but Angry Birds?! Emotional regulation is the #1 goal for Johnny right now, so learning ways to calm down when he is angry has been a huge focus in our house.

After gluing the template cut-outs to colorful construction paper, I worked with Johnny as he colored in the pictures and brainstormed answers to the questions at the bottom of each page:

What words can I say when I am angry?
What can I do with my face when I am angry?
What should I do with my body when I get angry?
What should I do with objects when I am angry?
Why does deep breathing calm us down?
Where can I go when I get angry?
How does being an angry bird hurt myself and others?
Who are some people that can help me calm down when I am angry?
How should I treat other people when I am angry?
Why wouldn't we want to spread our anger to other people?
What makes me angry?
Where can I redirect my anger?
How can I forgive someone who has made me angry?

He came up with his own answers to each one and then wrote them in all by himself. It was a somewhat tedious process as he is still working on spelling based off of what I write down on a separate piece of paper for reference. As he was coloring and writing, I was laminating the pages of our book. We worked in tandem for most of the morning, and by the time he was ready to get on the bus, we had done all but bind the book. When he got home, we cut 3 holes down the sides of each page, then connected them all together with binder rings. He couldn't be more proud of himself! We took it with us to GG and Pap Pap's house so that he could read it with them, and he is taking it to school with him today.

Having Johnny be a part of the process of making the book not only by coloring in the pages, but also through helping write part of the story, was in my opinion the most important part of our exercise. The work was twofold: he both was forced to truly ponder and focus on ways to calm his body, and he was also personalizing the book to match his own understanding and preferences for cooling down. I could tell it was important to him by the way that he stuck with the project for so long. He was determined to make it the "best book ever!" and finish as much of it as he could before school.

True to form, I had to explain that while the book was talking about angry birds, it was actually referring to him. When it had phrases such as "cool down" it actually meant calm down, not finding a way to lower his body temperature. For a while there, he was convinced that the best way to cool was to go swimming... I love how my boy's mind works!

world's most beautiful turkey

"Mommy! I'm THE MAN! I pooped on the potty!" When he was born, I never thought potty training would still be a part of our daily lives when Johnny was 4 1/2. And yet, despite all of the struggle since he turned 2 and we started this ordeal, I'm kind of amazed. He may hold the world record in time spent actively trying to potty train, but he also is one of the world's most incredible people, in my mind. After such a long battle, he has finally done it. And it wasn't a battle of me vs. him-- it was a battle he was having with his own body. I'm so incredibly proud of him, and while I think I would have been proud of his 2-year-old self had he potty trained way back then, I think that pride that comes after such hard work is much more important than if he had simply hit the next stage of development, no big deal.

I has hit me: this is what it will be like. Johnny, setting goals, (or having us set them for him, depending on the issue) and fighting his way forward until he finally succeeds. Yes, with any kid I expected this general pattern, but with Johnny we may experience some more unusual goals or experience stages in a different order than most. Most importantly it hit me that none of his development is about me. My own struggle over the past few years has been internal conflict when it comes to my son's difficulties.

Do I support him? 100%
Do I love him no matter what? 100%
Do I understand how his mind works? 94%
Do I remember life at his age and my own struggles? 100%
Do I remember how people made me feel when I failed? 110%
Am I embarrassed by my son?...

I don't know about other parents of children with "high functioning" autism, but when my son comes across to most people as developmentally normal, it is sometimes easy for me to be self-conscious about the one or two glaringly obvious issues that might not seem to have context for outsiders. You can't look at my son and "see" that he has autism, even when observing his general behavior for a short while. You can look at my son (up until 2 weeks ago) and see that he is still in diapers at 4 1/2. To most people, this is a red-flag for a parenting fail. She didn't start trying while he was young enough, she hasn't tried hard enough, she hasn't read the literature and learned different methods, whatever method she is using it clearly isn't working, she's not very invested in helping him develop, obviously. 

I will (sadly) admit that there were times where I not only wanted to give up on trying to help him potty train altogether, but was embarrassed to have to take my 4 year old out of the play place at Chick-fil-A to get his stinky diaper changed. I felt like that reflected poorly on me, regardless of the valid reason for our situation. But what I was forgetting was that it wasn't our situation: it was his. Not in the sense that he was being left to figure it all out on his own, but his potty training wasn't about me. Worse than anything, I lost sight of what it is like to be Johnny. The kid is practically my clone, and I know how it felt to be treated the way I have treated him over the past year surrounding this issue. I encouraged him, I never yelled at him for failing to make it to the bathroom, (though I did ask "why?" and often with frustration) I never punished him for being unsuccessful... but I was, when I am 100% truthful, embarrassed by him at times. He may only be a preschooler, but he is smart enough to know when someone isn't "right" with him. As much as I struggle to understand emotions in other people, I know when something is off. I may not know why or how, but I know when someone is being different around me or acting differently in accordance to my actions. As a kid, and now as an adult, it makes me feel like crap. So to know that I may have made my kid even the slightest bit aware of the fact that I wasn't okay with him being who he is makes me feel horrible. God, I pray that he never noticed.

I am ashamed of myself. I am this kid's #1 supporter, complete and utter powerhouse defense and ragingly protective mother, yet somewhere along the lines I made his experiences about me instead of him. At some point, the explanation of why he is developing differently became something I felt was necessary to voice in defense of myself instead of just allowing him to be who he is, without needing a reason. I got caught up in feeling judged by other parents, even the ones I know in my heart weren't judging me, (Erin Leigh) and I became defensive. What I failed to see was that my son didn't need defending in this matter. He simply needs a mom who loves him and is fine with who he is, no matter the reaction of others.

My son develops differently than most. I do too. How on earth did I end up being the person who wasn't okay with that?

Today I received a text message from his teacher. She sent me a picture from school, where Johnny has proudly created the "world's most beautiful turkey!" He and I may be turkeys in a hen house, but at least we are different together. I need to make sure I don't lose sight of that again, because I've got the world's most beautiful one standing right beside me, and his is a life of unique moments that I don't want to miss.

big boy stuff

Johnny has had an awesome week. Monday, he made the change from pull-ups (which we always called diapers to try and make them seem as "little kid" as possible) to underwear, and he hasn't even had an accident yet. Without fail, he has used the toilet exclusively for almost 2 full weeks now, the second of which in underwear. We are all quite impressed, and it shows me that once he makes up his mind to do something, it happens. I'm just glad he has finally decided to make this change!

Thursday was Halloween, and we had a busy evening. We trick-or-treated at the mall, (in the light, nice and warm, with candy I didn't have to "check") went to our church's "Autumn Extravaganza" that had everything from bounce houses to games to a professional photographer to capture all of the costumes on film, and then trick-or-treated at the grandparent's houses. Johnny did enormously well with the fact that he wasn't allowed to have any of the candy he collected, (due to all of the sugar-- which he doesn't eat) and we gave him several sugar-free mini Reese's cups throughout the evening. The next morning he tried to convince us that he had to take all of the sugary candy he got into school to give to his teacher, because she had jokingly told the kids to bring her anything they got and didn't like. She said she felt bad about the fact that he took it seriously, but it is just a part of the deal with my little dude. No biggie! We were able to refocus him on something else and he moved on quite nicely.

Last night my mother-in-law and sister-in-law took Johnny for the night. He had dinner, a movie and a sleepover with them, and Steve and I had a Numb3rs marathon. We were informed pretty late yesterday evening that he had pooped on the potty, and I promised him a prize when I came to pick him up. This morning, I got a FaceTime call from him to say that he had done it again. I took the question mark prize box with me, and he found a book in it the "first time" he looked, (he made me take turns, not put two in at once) and a Spider Man costume the second time. Yay Target 50% off Halloween! He has been dressed up ever since. We went to GG's to watch some of the Penn State game, and then made our way home.

In 2 weeks we will be having a Potty Party for Johnny. To celebrate the end of his long journey through the land of potty training, we will have a party with all of the people who were instrumental in the process. He is so excited! The arrival of the party day will also mark the end of the prizes he has been getting as incentives to go. He will then have been in underwear for 3 weeks, and I figured that a party was a good way to end them. I expect him to fight me a bit on it, but I don't think that after going so long without using pull-ups he will even ask to use them again. Either way, he won't get them. Hopefully the final transition won't be too bad. I'm excited to celebrate with him, and I think we will get him some special new underwear as a present. My little man is finally a big boy!