A couple of weekends ago I attended a workshop that was put on by our local Down Syndrome group (DSAW-Fox Cities). They brought in a presenter named Alice Belgrade. The title of the workshop was from defiance to compliance. I knew that I needed some of this with Lydia. It was a great workshop and I had a lot of fun being away from the kids with a good friend!
I know that parenting a child with special needs, specifically with many medical challenges, is different than my other kids. However, I have not been able to put my finger exactly on what is different. But there are many times my husband and I just shake our head and we are at a loss of what to do next.
One of the major take aways that I had from this day long conference was about the environment Lydia has. I work so hard on making it safe, and getting the toys that are accurate for her ability, and making sure that I work with her on her skills and what she is doing in therapy. However, I have been missing two huge key parts. One is "Is the environment functional for her?" Two is "She likes to have fun and is her environment fun?" No and no were my answers.
I remember with Ellen and Allison I enjoyed baking with them (we still make many memories cooking together). I remember that Ellen was great at pouring and really struggled with cracking eggs. I had to either pre-crack the eggs or have her sister do that. Allison was just the opposite in that she was great at cracking eggs but really struggled to pour. I had to either pour for her or pour the liquid into a smaller container so she could pour. I did this so they would have success and they could take pride in helping me bake. No where ever did it enter my mind that Ellen is three and she should be cracking an egg. No where ever did it enter my mind that Allison is two and she should be able to pour. Their environments were set up so both of them could feel success at their individual ability.
They are no different than Lydia. I need to create an environment where Lydia can be successful and she can complete tasks on her ability. I should not think that because she is three, she should be doing this. No, I should look at her abilities and create the environment to fit her abilities.
Sounds really simple, right? Yep, I agree too. But I have struggled with this. As I have thought and wondered why this was so difficult to me, I had to admit something that is really hard for me to. I had to admit that maybe, somewhere in my mind, I believed the negativity that was told to me at the beginning. Maybe I didn't really believe that she could do it because she has Down syndrome. Maybe I was passing her off and not giving her the opportunity that she needed. That sounds horrible. But I am slowly connecting those pieces.
I remember sitting at one of Lydia's very first IEP meetings. We wanted to set a goal of her being able to button and unbutton. Her OT said that was probably too high level and they would not expect Lydia to be doing that yet. Eric, my husband, firmly said that we want to keep pushing Lydia and allow her to tell us when too much is too much. We don't want to predetermine what she can do or cannot do. That is important to both Eric and myself, but I get caught in all of the negatives. I see the tests that say she is so far behind and this small, yet very powerful voice says she will be nothing. I get confused and I struggle with that.
Lydia deserves an environment where she can experience more success than failure. It is not based on age or disability or the color of her eyes. It is based on what Lydia can do and where Lydia is at. It's putting extra step stools in the kitchen so she can reach the plates, because she is capable. It is helping her to get the lid started on the water bottle so she can finish it and experience the same success as her sisters. It is taking my time to help her to hang her jacket on a hanger. It is that extra three minutes that I get frustrated with. But it is about helping her experience success and not failures.
I also forget how much she loves people. I forget that she loves to have fun and be a goofball. This motivates her, this helps her to want to do more when it is in a fun environment. Seems so simple again, yet I couldn't put those pieces together until now. Instead of thinking about it as playing games when she is eating, I think of it as creating a fun environment so she can be successful. It is hard sometimes because what I think should happen, doesn't. But it doesn't happen the way I think it should either. So really, if we are able to motivate her by allowing her to have fun, we have a win. No matter what I think!
It is hard to admit that I probably have been a huge stumbling block in a lot her learning because I could not simply let down my wants and do what is really best for her. I forgot to create an environment for her where she can excel. I did so well with my other girls, what happened? I think that I got so wrapped up in trying to create awareness, trying to manage medical issues, and trying to prove to someone (I am not sure who that would be) that she is worth something. She is worth everything simply because she is my daughter. It does not matter what others think and I need to remember that.
When we cooked the other day, Lydia was able to pull the butter from the paper, she was able to turn the cap to the vanilla, and lower the mixer and lock it into place. She was able to laugh and play with her sisters. I created three separate environments for each child, one where they could learn, be challenged and still experience success.
I think after writing my last blog post, I was able to easily connect the pieces. Awareness, to me, is not about proving Lydia's worth. It is about showing what she is capable of doing right where she is at. It is about changing who I am to be the very best mother and advocate for her (and this goes with my other girls as well). I think it is about changing attitudes towards Lydia. She is not less of a person because Downy syndrome. She may be different, but I am completely different from my sisters too!
I am glad that God has allowed me to connect these pieces. Things that seem to be right in front of me, but I was completely missing them. Creating an environment where she can feel successful is my ultimate goal. And it does not matter what she should be doing at what age, it is about her ability today! I have nothing to prove to anyone but share my sweet little girl with everyone!
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