Jsack's Mom's Blog

Welcome to my blog where I share my special needs parenting journey with my heart, truth, and love, one story at a time. ❤️

The birthday party

I was so excited when my son received an invitation to his new friends birthday party. Having a child with autism, ADHD, and Sensory Processing Disorder (SPD) birthday parties can be a double edge sword. Firstly, there’s the question of is he going to to be invited to any parties and secondly, do I stay for the party to assist him when he needs help?

The day arrived and I had done all the preparations with my son with a social story, drawing out a schedule, and keeping my visuals handy in case plans had changed. He was quite excited and I needed to drive around the block a couple of times till he can process his feelings.

We arrived at the birthday boys house and was met at the door by the parents. I explained I would stay for 30 minutes until my son felt comfortable then I would quietly leave. I knew I’d be the only parent there as by the age of 6 or 7 it’s a drop off and pick up event.

I haven’t been able to do that with my son in a neurotypical setting there’s a lot of variables to consider. Is the birthday fun going to be too overstimulating for him, will he understand that he can’t open the presents, and lastly will he understand when it’s time to leave.

I sat quietly on the couch making small talk with the parents and surveyed the yard where a nerf gun war was taking place. I had to firmly and directly tell my son the rules as he wasn’t interested in leaving the well stocked toy room. He eventually made it outside and joined in the fun that the other guests were having.

I didn’t want to be that type of parent helicoptering around my son son so I made myself as inconspicuous as possible. With the play getting more intense I could see my sons eyes glaze over and I knew it was time to switch to another activity. That didn’t work out so well so I joined in with playing a football game and hoping my son would want to play as well.

The distraction worked and we were happily tossing the ball back and forth when it was time to come in to have snacks and open presents. My son wasn’t interested in eating but I had begged him to have some carrots as it will fill his sensory seeking need once the game was cut short.

All the kids gathered around and off my son disappeared to a bedroom to have some quiet time. I followed behind him to let him know I was there to help him and the kids were watching the gift opening. He had no interest in me being there or seeing the presents. He asked me to leave and said “I’m fine Mom I got this.”

As I prepared to leave I gave the parents my contact info in case I was needed earlier before pickup. My sons words of I’m fine echoed in my ears as I drove away. I prayed he would be as I wasn’t even close to being okay with leaving him behind.

I spent some time with my older son and then it was time to pick up his brother. I had made sure that I gave him 10 minutes to prepare himself to leave as I followed him to get his shoes and goodie bag. I set the timer on my phone and stood at the door as he got ready to go. As I turned to thank the family for having him at the party he bolted!

Luckily it was within the house and I could get to him quickly. I knew he was having a hard time with transitioning from leaving the party so I remained calm. He professed how he didn’t want to go and I told him all the reasons why we had to leave. I was doing my best to allow him time to process and reached for his hand only to be shot in the throat with a nerf gun.

I was taken aback and started coughing as I unprepared for that impact to my vocal chords. Much to my dismay this whole scene of me chasing him to get the gun and get him out the door was witnessed by all the guests in attendance. I’ve come to a point where I’ve been judged for my parenting that I only care about my child not others opinions.

In that moment I wanted to save my son from any future scenes of chaos and I have pulled him along and carried him out the door. I learned from this experience as it was the only thing I could do in order to help my son. Now I make sure we have a game plan in place and keep the party time to no more than 2 hours.

If things go south as my son reacts to transitioning I have my phone as timer, a little white board so I can draw out the plan ahead of time, and another activity to do as soon as we leave. As I reflect back I know now I was caught up with my son fitting in with his classmates and be like all the other typical kids.

Neurodiversity allows for thinking outside the box and my son is all about doing that in his own way with his stellar imagination. I realized that my need for him to be comfortable at the party spoke volumes about my fear of the unknown.

Now I meet my son where he’s at and time has proven to be the best teacher as well as steadfast love. If I focus on the things he can’t do like stay at a birthday party without me, then how will I celebrate the successes he has that he’s achieved in his own.

I’m happy to say there’s been other birthday parties and he’s felt comfortable enough to ask me to stay or ask to leave if it’s too sensory overwhelming for him. He’s grown and changed so much since that first birthday party and I know no matter what obstacle he faces he’ll be fine, and he’s got this.

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by the Sensory Spectrum and the Mommy Evolution. Click on the link below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!

You are invited to the Inlinkz link party!

Click here to enter

https://fresh.inlinkz.com/js/widget/load.js?id=31b56e13cf9f3dece6c1

7 Comments »

An angel with a pink balloon

I’m going to tell you a story about a little girl, let’s call her Sweetie. She had a special event to go to her with Mom and there were going to be pictures. She was dressed in a beautiful dress, frilly with crinoline, lace, socks and shoes. This wasn’t her choice to wear this outfit, but it made her Grandma happy who picked it out especially for her. The trouble was no matter how beautiful the dress was, or how gorgeous sweetie looked in it, it made her miserable. You see sweetie has a neurological condition called Sensory Processing Disorder (SPD). I’ll let Dr. Jean Ayre’s explain it better than I can.

Sensory Processing Disorder (SPD, formerly known as “sensory integration dysfunction”) is a condition that exists when sensory signals don’t get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological “traffic jam” that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively.

IMG_0758.PNG

This is why the dress felt uncomfortable on Sweetie’s skin. The crinoline and lace made her feel itchy, and the socks made her feel like her feet and legs were on fire. This may sound like an intense reaction to an outfit for a picture day. But this is how things feel to a child with SPD. The time came for pictures to be taken and poor Sweetie was having a difficult time. Each time the camera flashed or made a clicking sound, her ears were bombarded with the noise. The longer she had to be there looking gorgeous but suffering, caused her body to go into sensory overload. Sweetie’s Mom was watching, waiting, hyper vigilant to help her daughter but feeling helpless. The photographer taking the pictures made comments about Sweetie’s behavior. Her Mom responded to the photographer with “that’s not a very nice thing to say.” Even after her Mom explained that Sweetie has a sensory condition. The useful information wasn’t needed or heeded to help sweetie, and the unprofessionalism continued. The fact that a family picture caused such a negative response from the photographer spoke volumes of her lack of professionalism. She dismissed Sweetie’s Mom with a comment “it’s not my fault you put her in that dress.” Finally the photo session was over and sweetie’s Mom quickly undressed her and put her back into the cotton dress she arrived in. It felt so nice and soft on her skin and didn’t make her feel like a prickly cactus! She even wanted to make her Nana happy and put on her pretty picture dress over top of her cotton one. Dinner and cake were enjoyed by all and then it was time to go home. Sweetie had a pink balloon as a lovely reminder of her Great Grandma’s birthday and looking at it floating around in the car made her happy. Her parents made a quick stop and she changed into her pajamas. Then the unthinkable happened the balloon got loose and floated up into the sky. Poor Sweetie was so sad and broke down crying. And at that moment a woman appeared knocking on the window of the car with another pink balloon! That angel with the pink balloon was there when Sweetie needed her the most. An open door into the spirit of love and giving. The photographer was judgement personified and a closed door. What a simple blessing for a sweet little girl in the gift of a pink balloon. 💗

*Disclaimer*

This is a true story that happened to a sweet little girl and her loving Mom. As soon as I read it I felt compelled to tell their story, with their permission. Thank you for reading. 💓

IMG_0412.JPG

2 Comments »