The past few weeks we’ve felt like Peanut has been making a lot of progress. We’ve seen some of her vocabulary return. (Now saying Mom, Dad, No, I Done and signing mine) She’s been making a lot of strives in her walking. Standing almost constantly on her own and even trying to take steps fully unassisted. It’s been so easy to see her accomplishments these past few weeks!! It would be impossible for me to explain to you how proud I am of her.
Then today happened. She will soon be starting school once a week for four hours. This will take the place of her twice a week in-home therapy. Because of this, her worker wanted to see how she would be in a school like setting while other kids are around. So we had her therapy session in the classroom with 4 other little ones doing their own thing. Jana wasn’t expected to participate with them, they wanted to see how she would do with the distractions and noise. Now, I am very happy to say that the distractions didn’t bother her that much. She was still able to listen to the story time, interact with her therapist well and even participated in a music time with the other kids. That was wonderful to see. She seemed to be fully unfazed by the situation. Until you stopped to look closer. I noticed almost instantly how antsy she was becoming. She struggled sitting still and was easily frustrated when things weren’t going the way she wanted. Because her vocabulary is so limited, when she is upset, she grunts and even throws things to show her agitation. I watched my little girl get so frustrated and upset at her therapist because she couldn’t express herself correctly. I watched her cry out, see the frustration in her face, become highly irritable because too much was going on around her. As her therapist made Jana complete the activity and put toys away (all the while Jana was fighting back) I wanted so bad to just grab her and say that is enough. So much of me just wanted to take her away and not make her work so hard for the simplest tasks.
To say it was not a very successful therapy session would be an understatement. When we got into the car I almost broke down in tears. When I looked back at my sweet girl and she was still so agitated, pulling at her shoe, grunting at me, my heart broke. I can’t imagine how difficult it must be for her to not be able to communicate with us. To not be able to tell us that she doesn’t like something or just wants to go home. How scary it must be inside her little mind to feel like no one understands her. To want to give up so badly but have the adults around her pushing and pushing for more.
Part of me wants to protect her from all of this. To cancel all therapies and just let her be the happy go lucky girl she can be. No longer pushing her almost constantly to reach new goals and new skills. I know that if I were to do that, she would be very delayed later in the future. It would hold her back so much. But you know what, part of me is ok with that! I would love and support her no matter what she could do. I would keep her in this little protective bubble and love her just as she is. But that’s not fair to her either. My job is to help her be her very best. I don’t have a clue how I am going to be able to handle the intense ABA therapy she will one day start.
There is no easy answer. This is what Down Syndrome and Autism do. It makes the world a lot scarier place for our little ones. It makes every task a little harder and every achievement so much sweeter. I hate looking into my babies eyes when she’s looking at me like “Mama please don’t make me do this.” I hate turning away when she screams during therapy. I hate how sometimes she is so frustrated with the work, she gets upset at me for making her be there.
For every goal she reaches, there will be 5 more put in that place. Every new ability, skill or goal will be worked on and pushed for weeks before we see progress. Every time I feel like maybe she gaining leverage. Maybe she just isn’t that far behind in her peers, reality smacks me in the face and I see how much more she has to work towards. I hate that! I hate that she works SO HARD….so hard…and yet she is still 10 steps behind from everyone else. I am so proud of who she is, the fighter that is inside of her. But man…..oh man…do I wish I could just make it easier on her.
Sorry for the rambling. Remember, this blog is more for me than anyone else. Thank you for letting me get this all out and cry a little. Peanut is napping, and once she wakes up I will continue with pushing her to do a little more. I know one day all this pain will be worth it! I might be her toughest coach, but I promise I’m also her biggest cheerleader!