This past week has been extremely challenging for us. I won’t go into too much detail because I’m always concerned with protecting Griffin’s privacy. And I also don’t want to add to the already existing confusion that surrounds Aspergers. We have an amazing team of professionals that have and continue to help the three of us and for that we are extremely grateful.
Due to the challenges we faced this week, we had to re-work Griffin’s access to technology plan. Basically it’s a plan that lets us all know how much tech time (video games) he can earn each day if he has appropriate behaviors. There’s also a chart that tracks the behaviors he’s working on that I fill out each night.
Thankfully we print it out so we that we’re all on the same page, see what I just did there?
We’re also working on Griffin’s repetitive behaviors. It involves me repeating back to him certain responses to questions he asks me. He repeats these certain questions close to 100 times a day. We’ve come along way with this behavior. Sometimes instead of answering him back I will give him a thumbs up but it’s still a big issue. As his mom I would do anything I could to help him. We honor all of his challenges and try our best to equip him with tools he can use, so he doesn’t have to be dependent on someone else. The stress of this particular behavior is affecting all of us. We are trying a new approach this week. He will get a certain amount of tickets per day that he can use to repeat to me and then get my response. When he’s used all the tickets up, he knows I will not answer him back. I know this is going to be challenging for both of us but I know we can do it! Despite the stress and knowing addressing this behavior is in Griffin’s best interest, I still feel guilty. I feel like I’m being cruel to him. Mother guilt is a bitch 😉
During this week we had major support from people that had no idea what we were going through and are still going through. I wanted to highlight those moments as a way to thank them and to stay grateful and positive.
The first moment happened on Tuesday at the homeschool group we are a part of. Some of the kids were playing with a balloon. Griffin likes balloons but gets very nervous that they may pop. With his ears covered he asked them to stop playing with the balloon. Despite the fact that he was really nervous, he was able to communicate appropriately. I was really proud of him. I went to get his earplugs because I understood that the kids might still play with the balloon. That’s when the mother of one of the kids told them to stop and then said to me after I thanked her “Griffin’s comfort is more important than them playing with a balloon right now.” She also told me how her daughter has sensory issues too. I thanked her again and told her how much we appreciated her understanding. I also used it as a moment to teach Griffin. I told him to remember how understanding people were to him, so he could do the same thing when he saw someone having a challenging time.
Then this past Thursday we had a last minute doctors appointment downtown. We had to go during Griffin’s ABA session, so his therapist came with us. I was so happy to have the back-up, even though Griffin does great when we go places. We usually make a day of it when we go downtown but this time we could only go to the appointment. I always make the appointment for the afternoon so we can avoid crowds. But this time we had to take the train during morning rush hour, not the best time for a kid with sensory issues.
The appointment went well and because we had some time after we were able to visit the Disney store. We visit the store on appointment days and have made friends with people that work there. I told Griffin that our friends might not be there but it would still be nice to go.
After we went through the doors we started looking for our friend Lena. I always text her to let her know when we’re coming but because this was a last minute appointment I was unable to, lucky for us she was working. The joy that came over her and Griffin was just the medicine we needed.
I got to talk with Lena as Griffin and his therapist looked around. Lena spoke such encouraging and supportive words to me, it was a true gift that left me uplifted.
Griffin found some Tsum Tsums which happened to be on sale. He asked if he could get one and because the therapist was right there I kind of flustered and didn’t know what to do. By the way his therapist is wonderful and never for a moment makes me feel like she knows better than me. I started to tell him he could get them with his own money next month when we came back. I asked Lena if the sale would still be going on next month and she whispered “no.” As I started to tell Griffin I would pay for them and then he could pay me back, Lena reached into her pocket and gave me the money to pay for them. She knew I would try to say no, so she said it was her Christmas present to him. I was so overcome with emotion and so was Griffin.
Later that day we went to the “Y”. While Griffin was swimming I visited with some of the staff. As we were talking I briefly shared that we were having come challenges with Griffin. One of the employees who works at the “Y” shared with me that he too was having a difficult time with his own daughter who is also on the autism spectrum. The head of the after-school program passed by and she reassured me that with the weather being the way it has been (we went 8 days without sun!) it was understandable that everyone was going to be affected in one way or another. My “Y” friends let me know that they were there for me. All the stress and worry really hit me and I couldn’t help but start to cry a little.
Griffin and Lena
In moments of sadness and worry I experienced love thanks to the wonderful people I encountered and know. Love is being there for others, especially when we don’t know what they’re going through. We’re all going through things, we all need to be there for each other.
Here’s to love yet to come!