Where Do We Go From Here

This is the first time since I’ve started to write that I honestly don’t know what to say. Each time I sit at this computer, I know exactly the story I want to tell and, once I get started, it just flows. I write, edit, post….write, edit, post. And each time I feel satisfied enough with the outcome. Today is different. Today is hard. I have a lot to say, I just don’t know how to say it. It’s been a rough couple of weeks for me, for my family, and for my little girl.

It started with parent-teacher conferences two weeks ago. For the most part, I walked in feeling hopeful. Up until this point, all reports home have been favorable. While I didn’t expect to hear that all of my daughter’s problems have disappeared the teacher’s report still hit me like a slap to the face. I was told that my daughter has difficulty controlling her emotions and that she is  impulsive, rigid and  intense. She is stubborn and she has trouble in social situations because she wants her own way and gets upset when she doesn’t get it. But the teacher finished this by saying that she is making great progress and for a second I wasn’t sure we were talking about the same kid. All these issues she just laid out in front of me and she calls this progress?! But you see, from the teacher’s point of view, my daughter is making progress. Compared to the reports in her file, my daughter’s behavior has improved over the last year but all I can hear is that she struggles and that makes me sad. I know that, in terms of a school, she is in the best place possible. Yet, this point she is at, where just getting through the school day is still a struggle, is the best she can do right now. I’m afraid that maybe this is the best she will always do and I don’t want that for her.

There is a bigger reason why I am having such a hard time with all of this lately. My daughter’s behavior has been studied, analyzed and evaluated many times in the last year and, no matter where the report comes from, the results are all the same. Her behavior comes from a lack of emotional regulation. She is unable to control herself, plain and simple. Unfortunately for her, this is the hardest type of behavior to change. She is smart, she could tell you all the tools she is supposed to implement when she feels herself getting upset. She just simply cannot do it. Her behavior is a symptom of something bigger..something that is beyond her control. This is why she is so rigid, so fearful of change or the unexpected. She has to deal with something that is beyond her control everyday of her life and that, in and of itself, is stressful for her. All of this and she is only four.

It has been hard enough listening to other people tell me these things about my daughter but something else happened this week that was probably the single most difficult thing I’ve had to deal with as a parent. My daughter’s behavior has been off the charts lately. She has been having several meltdowns a day for seemingly no reason. She has been defiant and oppositional. She has been very difficult to deal with. During one episode, exhausted from not being able to get through to her, she was sent to her room. After a few minutes, my husband went upstairs to go and get her. When he came back he told me that my four year old looked him straight in the eye and said, “Daddy, I know I have to calm down. I just can’t. Everyone always tells me to calm down and to take a deep breath but I just can’t do it. I try and I try and I just can’t control myself.” And these words broke my heart. I have watched her after a meltdown more times than I can count..the shameful look on her face, the repeated apologies for not listening, her eyes darting around the room to see if anyone is staring at her. Seeing these things has been hard for me. But to hear this little girl verbalize her struggles like this was like a kick in the gut. To know she carries this burden and that she is fully aware of it and, even worse, she is ashamed of it, is the toughest thing I have had to accept. The worst part is I don’t know what I can do to help her. I have tried every type of behavioral intervention I have ever learned..reward charts, schedules, positive reinforcement. I have tried to implement as much sensory input into her daily routine as I possibly can. But it isn’t enough.

As soon as I realized that my daughter had sensory and behavioral issues my goal was to never make her feel like there was something wrong with her. I never wanted her difficulties to overshadow all the wonderful things about her. I never wanted it to make her feel alienated. Yet, as she gets older, other kids are starting to notice and pull away and that makes her feel really bad. I tell her every chance I get that I think she is wonderful. My last words to her each night are “You’re a sweet, smart, and beautiful girl..and I love you the most.” However, I still can’t help feeling like I’ve failed her. The problem is, none of the professionals that have worked with her will say that these outbursts, this lack of regulation, stem from her profound sensory issues and I know deep down that this is all related. Sensory Processing Disorder is still not recognized, it cannot be proved. The only proof of her sensory issues that is documented in her file is based on a parent-completed Sensory Profile. So it’s basically my word against doctors, teachers and psychologists who all call it something else or won’t call it anything at all. So now what?!

There is no worse feeling as a parent than feeling powerless to help your child. I know that the last few weeks are a phase, a low point, and that at some point we will get through it. But my fear is that these low points will make more of an impact than the highs. That my sweet little girl will believe the bad over the good. I’m afraid that, unless we get the right help for her, her issues will permanently damage her view of herself. She has already been judged in the past and I see the impact that has had on her. I’m just not sure what to do next.

Usually, by the time I finish writing, I feel some sense of closure. The process is therapeutic for me and by the time I get my story out, I finish with a sense of hope and I end on a positive note. Today, I don’t feel that way. So, I’ll end my thoughts with an example of how wonderful my daughter is. Just last night, she and I were laying on the couch watching Pajanimals. This is our nightly ritual. The exhaustion of the last few weeks kicked in and I started to drift off to sleep. Suddenly, I felt my glasses coming off my face. I opened my eyes and there she was, my sweet girl, folding my glasses and pulling my Uggs off my feet. This is who she is…my sweet, smart, and beautiful girl. This is what I want her to be known for…her compassion, her warmth, her good heart.  This is who I want others to see when they look at her. More importantly, this is who I want her to see as herself.

2 thoughts on “Where Do We Go From Here

  1. I’m sure your doing this already but pray to God, hard. God loves you daughter like she is the only person in the world and He made her as she is for a reason, even though its impossible for you and others to understand it right now. Go to the blessed sacrament and talk with God, tell Him your concerns and ask for help, and He’ll give it to you – promise 🙂

  2. When I read your writings I can only see myself and my son. My son is 8 and we are living parallel lives to you and your daughter. I totally feel your pain, frustration, and sadness for the situation that your in. I am in a terribly ugly situation in my sons school and am currently waiting for a CSE meeting to FIGHT to get him services he should have had 2 years ago.
    It’s tough…..😣

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