Waiting = Meltdown?

For years, Gracie struggled with waiting. Patience was not her strong suit. Gracie liked to do things when Gracie liked to do them. And when she wanted something, she wanted it now. I can say that those feelings probably haven’t changed. However, her reaction to them has. Screaming, yelling, spitting, and hitting. Bending her joints, scratching herself and pulling her hair. Those were her ways telling me she was done and that she didn’t want to wait any longer.

When eating, Gracie used to throw her dishes across the room when she was done. Made sense to her. She was done and didn’t have the words to tell us. Quickest way for them to disappear is to throw them. Being in a restaurant Gracie would finish her meal in less than 5 minutes. Then, scream, because she was ready to go even though the rest of the family still had most of their plate left to finish.

Standing in line at MarineLand, the Ferris Wheel, Maid of the Mist, Wonderland, or even waiting for her turn on the swing or slide at the park or school was torture for her. Gracie didn’t have time to waste and she continues to always think ahead rather than stay in the moment. Not having the words to express herself was another reason for these reactions.

So, we started small. I mean, very small steps. We started with counting to 10 when she was done. Before she had the chance to eat her last bite and whip that plate across the room like a frisbee, I’d grab it, count to 10 and let her out of her high chair. We counted to 10 for several days before moving to 15 seconds and then 20 seconds and so on. Once we were getting to about 40 or 50 seconds, I bought a timer from the dollar store and we put the timer on. We still counted with the timer at the beginning until the beeping alarm went off. It became a game for the whole family. The kids would join in with counting and big smiles. Once we mastered the timer and she could wait 5 minutes, we attempted it at a restaurant. I would call ahead and order our food because the timer had only been practiced at the end of her meal. Gracie was able to successfully join the family, eat her meal and wait 5 minutes at a restaurant, then her dad or I would take her outside or to the car while we waited for the others to finish their meal in peace. We continued to do the same thing with the timer as we did with the counting. Increasing by 30 seconds at a time. Beginning at home and practicing in public. We had timers everywhere!

This strategy worked for waiting in lines as well. We would still get the pass that was offered to those with special needs, but we would make sure to not use it for the rides with a much smaller line. Having a timer on (we added a few more minutes on than expected just in case) would help Gracie stand in line. Seeing the numbers decrease was all she needed eventually. Of course we had snacks and fidgets, etc. But seeing the time count down reassured her that what she wanted was about to happen.

Today, Gracie waited in a line to advocate for herself to get the pass at Wonderland. She explained to the lady that she has autism and has a hard time with waiting longer than 45 minutes, noise and crowded spaces. All while dad was laying in the grass on a hill, reading a book, in the parking lot. This is something to celebrate!

Gracie and her cousin Heidi with Linus at Canada’s Wonderland
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A-ha Moment! Teaching vs. Correcting

Ok, I know I just posted a new blog post yesterday. And I still feel the same way and true to what I wrote. BUT…I had this a-ha moment as I was doing the hashtags on the Facebook group when posting the link. Specifically the hashtag #whenisteachingtoomuch…the same wording as the title. My first thought was, “Am I teaching or correcting?”

I’ve always seen it as teaching her. Helping her grow. She has to learn these life skills if she’s going to live without me someday. She has to know how to PROPERLY do these things. But does she really? If she manages just fine when I’m not with her every single moment, does she really need to do them properly? And what does that even mean? Properly. My way? My way of doing things doesn’t mean that she needs to do them the same way. Even though I like the dishwasher filled a certain way and she may leave cups facing up that get filled with water, but hey, they are still getting washed, even if a little bit LOL Does that spatula need to go in the drawer that I’ve allocated it to? It’s still put away, even if it’s in another cupboard. Looking at these sorts of things and picturing her in her own home someday, I realize that she will be just fine! The kitchen, living room, fridge, etc. are not her space. But, she knows where everything is in her own room and manages to do a fine job of keeping herself organized.

She is keeping track of her work schedule by printing it out and adding it to her calendar. She plugs her phone into its charger each night so it is ready for the next day. She makes sure her uniforms are washed and clean and ready to go for her next shift. She showers and uses soap, even though we are starting to notice she’s not rinsing her hair long enough, so that is something I can teach her about. The constant correcting is probably equivalent to constant put-downs. And I get reminded sometimes by Gracie that “I’m on her a lot today”.

I am grateful she has the words to tell me that when I need to hear it. And if your child doesn’t have the actual words, watch their body language. The eye rolls, the vocalizations, stimming, ignoring, whatever they do that shows you they aren’t happy…you know your child best.

I think for myself, I’m going to actually write down the things that are my “pet peeves” list that won’t matter if Gracie does them when living in her own home. I will try to focus on the things that will make a difference if NOT done “properly” like hygiene, cleanliness, and safety.

This isn’t going to be easy! I’ve created a habit that will be hard to change. But I’ll do my best. I’ve also heard that for every negative comment a child receives, they need four positive ones to counteract that. So I best get my lovin’ on!!

Thanks for listening! Sometimes just saying things “out loud” or writing them out helps me see the bigger picture.

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Transition to Adulthood

We had a meeting with a couple of people at Gracie’s school a few months ago regarding the transition to adulthood. CLH, formerly known as Community Living Huronia, was present to go over the Developmental Services Ontario (DSO) and the Ontario Disability Support Program (ODSP). Basically we were discussing what we thought life would look like for Grace. Would she live on her own? How much support will she need? Will she qualify for support through DSO? What are her future goals? This was an emotional day. We used to think Gracie would need constant support. But today, we feel she could live on her own with weekly support, help with paying bills, budgeting, making sure the house is clean, etc.

Gracie has two siblings, both who are off to travel and begin post-secondary education. Gracie wants this opportunity for herself SO bad! And I don’t blame her! She has worked super hard all these years to get to where she is today! Her goal was to go to college and that has now become a reality. She will apply to the Community Integration Co-op Experience (CICE) program at Georgian College when the time is right. I contacted the school to see if residence would be an option for her (she really wanted to do this) as she would definitely need a bit more support, especially with someone looking out for her, and finding a roommate that she could be herself with. Even though they have a program that suits her needs, they unfortunately don’t have any type of support for residence to get the full college experience! So today, we are creating her own apartment in the basement of our house. A place where she can practice caring for her own space, budgeting, meal planning, cooking and entertaining. With the other two moving out and their understanding of Gracie’s desire to have the same experiences, Emma gave her room to Gracie so she can have access to the whole basement. We’ll share the before and after photos and take you with us on our journey to adulthood!

Our privilege to do this doesn’t go unnoticed. I know not everyone has the space, time, money, partner or ability to do the work that needs to be done. There are some funding options to do this with Passport/DSO and ODSP which I I’ll see if Aaron can talk about later on. But the cleaning, meal planning, budgeting etc. are all things that can be done within the home and I hope we can help inspire you in some way to help your teens/adult children with a bit more independence. I’m sure we’ll be making cleaning checklists and recipes and/or meal planning sheets etc. If you see something that may be of use to you but you need it in visual format not just text, let me know and we’ll see if we can create something that best suits you and your child.

Honestly, I can’t believe I’m even writing about adulthood! I know many of you have young children and I’ll be sure to still share those experiences as well. But again, feel free to reach out if you need some support!

Before

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