I have had to make a lot of hard decisions when it comes to Emily. One of the hardest came this past Spring. Her teacher reached out to me to let me know that there was going to be a Life Skills classroom in our school starting in the Fall. This might not seem like a hard decision. Either you do it or not but there is so much more to it.

This was not the first time we have been told about the Life Skills program. The first time was in Kindergarten. We are a large school district so we have 7 Elementary Schools, 3 Middle Schools, an Intermediate (9th & 10th grade) and a Senior High (11th & 12th grade). At the time when Emily was in Kindergarten, only one Elementary School had a Life Skills classroom and it wasn’t our “home” school. It was in the other end of the district. A much longer commute than her school. Doug and I went to visit the classroom. But at that time it wasn’t the right choice for us. She would have been a 1st grader with 5th graders. And at that time, she would always imitate others behaviors. So if there was a child who had some more challenging behaviors she would have started doing them. Plus her big sister was at our home school and being with her as most important for us.

After Jena went to Middle School, we never considered the Life Skills classroom. Emily was doing well. She was comfortable at her school and was making friends. Her friends were very important to her. She had built such a bond with them. Her speech was so hard to understand but they had been able to figure out what she was trying to communicate. She was happy.

At the end of 5th grade the Life Skills classroom came up again but for Middle School this time. I sat through the presentation given by the teachers. There were a lot a really good things about it. However it was a different Middle School than all her classmates were going to attend. Her friendships are important to her and her friends. Plus even though Jena was headed to the Intermediate School, Emily’s cousin was going to be there. And family always comes first for us. So I told them I wanted her to stay on the path we were on. The next day we went remote and didn’t go back into school until Fall.

Her 6th grade year was rough. She hadn’t been in a school atmosphere for 6 months. It was a new school, all new teachers, all new paraprofessionals, lots of transitions, quarantines, switching between remote and in person. It was a lot. So we saw behaviors we have never seen before from her. I was getting phone calls or emails almost daily. It was not a great start. It was exhausting and frustrating. I cried a lot. It got better as the year went on but the initial few months were tough. Even though remote learning was brutal, it did give me an opportunity to see what her day looked like. It helped me realize why so many behaviors were during Science & Social Studies. Those classes were really hard for her and boring. It wasn’t because of the teachers or the paraprofessional. Even adapting was too much for her. She was so unhappy.

So when the teacher called about the Life Skills Classroom I didn’t say yes right away. I had a meeting and they explained everything to me. I knew deep down this was the right switch for her. I had said in the past if it was in her home school then I would consider it. But what was holding me back…guilt, the fear of being judged and acceptance.

Let’s start with guilt. I started questioning if I had done enough with her over the years. I didn’t make her read enough. I didn’t have her practice sight words and math facts enough. I should have incorporated more independent skills at home. I shouldn’t have given her the iPad so much. I shouldn’t have let her watch so much tv. I caved too quickly on things because I didn’t have it in me to negotiate or fight. I didn’t do enough to help her learn and grow. I took the easy route and now she has to pay for it. These are just a few of the things that went through my head. I felt that I had somehow failed her. That I took away opportunities that she could have had.

Now to the fear of being judged. The Down syndrome community is truly one of the most loving and supportive communities. And for the most part I don’t ever feel like I am being judged by any of them except when it comes to Life Skills. There are some that are very for Life Skills and have their kids in the classroom from the start. There are others that are very much against it. And sometimes the comments they make feel like a gut punch of failure on my part. So was I going to be judged as a failure or a lazy parent by switching Emily to Life Skills. Were others going to look at me and think she preaches inclusion but she really doesn’t really mean it. Then there is the comparison. Well their child is so ahead of mine. They must have worked more with them. Our family must not care as much about their child succeeding. Then there are comments like “it’s my job as a parent to teach them life skills not school.” Does that mean I don’t care or I don’t want to because it’s hard and time consuming. It is hard and time consuming and frustrating. What will they think of my parenting skills.

Then the acceptance. I am at a point where I accept that Emily has Down syndrome and this is our life. It took me awhile to get here but I do. But I feel like this acceptance is different. It goes back to the guilt in a way. Like I have to accept that I didn’t do enough with her and this is were we are. So it has more to do with me than her. I am very hard on myself. It is the perfectionist in me. I know that I have done a lot for Emily these past 13 years. Could I have done more…yes. However I have other children and I do need to think of me sometimes too. Even if I did all the things I listed above that I “should have done”. We still could be in the same situation we are now. I can’t predict the future and I can’t change the past. All I can do is keep moving forward and doing the best I can at this time. And I always need to remember that I need to do what’s best for her. Not for me or my ego or my expectations or what other’s think she should be doing. Just her. Her happiness is what is most important. I need to let go of the guilt and the judgement. I need to let go of the questioning of am I doing the right thing. I need to stop trying to predict the future. I need to just be in the present and do what is best at this time. Maybe we will change in the future maybe not. Only time will tell.

We are 9 weeks into school and I am happy to report this very hard decision has been the best one for her at this time. Emily is doing great. She is happy to go to school. She enjoys school. I have not received any phone calls or emails about behaviors or issues. (Knock on wood.) She is thriving and having fun while she learns. She is making new friends and still gets to see her old friends. She even has a fuzzy cover on her seat which she thinks is the best. So I need to look at what is most important which is Emily being happy, feeling successful and feeling pride in herself. And so far all 3 of those things are happening. And of course she is learning too. Plus does she really need 7th grade Science and Social Studies to be a successful, independent adult…no she doesn’t. What she needs is an environment that helps her grow into a successful, independent adult. And that is what she has now.