I figured it was a good time to post an update on Stephanie, the Shirt Shop, and life in general. Of course I had planned to be writing a new post every week or even every month and somehow it's been about 2 years. That seems impossible. It's crazy how time flies.
Since I last wrote Stephanie finished her high school program and moved onto an adult day program. I was very nervous about the transition and how she would do. But also more nervous if it was going to be the right place for her. She never really found her place or her people at any school she was at, it was hard to believe that this was going to be THE place. We did public school for 4 years, left because nothing good was coming from that. Moved and tried our first special needs school and again she lasted 4 years. Left there and tried another special needs school -that one only lasted 6 weeks- so sometimes I don't even count that one. Then onto our third special needs school. And once again we left after 4 years. And I can't say the 4 years at all those schools was good. We would have left sooner at all of those place if we knew we had a better place to go. So, I was very hesitant to try another place.
I can say so far I do believe they have her best interest at heart and want to work with her on her strengths and see her succeed. In their minds they are going to be taking care of her and the other adults for the rest of their lives so there is no hurry to push them to meet IEP goals in 3 months. They have the time to build trusting relationships and really get to know all the adults there. There is a lot to work on but it's done within Stephanie's time frame and they have lots of fun getting there. She is really enjoying her time there and it seems like she is able to do all the things she likes to do and is learning new things too. She just brought home a goals and dreams booklet of things that she wants to work on and I love that it was things like "accepting a change in routine", and "being safe in the community". Both very important skills but neither are easy for her. But I believe with the support of the staff there, she can accomplish those goals and so much more!
She goes 4 days a week to her program and the other day is a mommy and Stephanie day where we get to do our own thing. We've been able to go to the zoo a couple times with nice warm winter weather. We've done some shopping, libraries, haircuts, car washes, and now every Monday I take her to our neighborhood fitness center for a private workout. We get to work out together and it gets her moving in a safe space. It's good to get her moving since she likes sedentary activities so getting her to move her body is important. I do feel like she would be able to go 5 days a week to her program but I wanted 1 day that wasn't a weekend (when places are more crowded) to be able to do our stuff together.
She has also turned 18 since I last posted. Jeff and I had to figure things out for when she became an adult. We needed to get guardianship of her so we would be able to make decisions on her behalf. She doesn't have the mental awareness to make decisions for herself. I tried to do research ahead of time so I knew what needed to be done. Overall it was a pretty smooth process and thankfully they didn't make Stephanie come to the courthouse for the hearing. Not sure how that would have gone. It has been a whole new world of things I knew nothing about. But we were able to transition from the childhood services to the adult services with little complications.
Things at home are continued to be ups and downs but I feel we are on the right track. We are still trying to find the right combination of vitamins and medication. We were very resistant to putting her on any medication but at this time she is on nothing since the one she was on didn't seem to be helping, so there was no point of continuing it. But we are continuing with different natural approaches and a clean diet to help with her mood and aggression.
We had such a wonderful turnout for our Autism Acceptance Month sale in April we decided to have another sale for May. May is Apraxia Awareness Month and Stephanie's communication disorder impacts her daily life. Even though I don't consider Stephanie non verbal, she is still not able to comminucate her needs and wants to everybody. Once you spend time with Stephanie you start to understand her better but she is still not able to have a conversation or answer open ended questions. And she still will resort to "ya" even if that is not the correct answer. But I do believe her brain is still developing and she can still make new words and learn how to communicate her needs and wants.
Apraxia is a disorder of the brain and nervous system in which a person is unable to do the task asked of them even though they understand the request or command. This explains that she is not purposely being difficult, she literally cannot do simple tasks because the information gets lost somewhere from her brain to the muscles needed to do said task. I try to remind myself of how frustrating that must be when I see her get stuck. She isn't intentionally being difficult. She tries so hard at everything she does. Things that are so simple to us require so much more concentration and effort for her. She was dealt a very difficult hand to function in this world. But she is really a happy girl and finds joy in the simplest things. Like the happy tears she has when we ride the train ride at the zoo. Pure joy!
So use code APRAXIA10 to get one item FREE with the purchase of another item. Stephanie had so much fun filling all the orders we received in April. And as usual asked where and to whom each one was going. Share our business with your families and friends and remember to JUST INCLUDE EVERYBODY!
The collage is of Stephanie on the train ride at the zoo, some of her Graduation pictures and her on the 4 wheeler. She is so happy it's warm again for more 4 wheeler rides!
留言