Why Labels Matter..And Why They Don’t

Although my daughter’s sensory disorder was evident at birth and any evaluation she has had on her sensory processing skills supported the fact that she has significant difficulty processing information through her senses, there is one thing you need you to know. My daughter is NOT diagnosed as having Sensory Processing Disorder. Yes, I know, when I talk about her I reference her SPD but, before you call me a hypocrite, let me explain myself to you. My daughter does not have a diagnosis of SPD because it is almost impossible to attain. Why? Because Sensory Processing Disorder is not medically recognized as a disorder in and of itself but instead considered to coexist with other disorders..most commonly Autism and ADHD. And while any parent of a sensory child can find this extremely frustrating, I do see the argument as to why it is so difficult to get this disorder recognized. Sensory issues are hard to quantify. They are very abstract and the cause for it is unknown. Studies continue to try and prove that there is a neurological cause but, until there can be concrete evidence in proving this disorder, it remains up for debate. So you can imagine the difficulty I have had as a parent trying to persuade my school district to provide services for my daughter when the cause of her issues has had no label. Not only did she have no “real” disorder but her teachers didn’t believe us either so I at first went up against my district with more data to support why she shouldn’t receive services than why she should…and I won! But, in knowing the system and in seeing that my daughter needed more from the district to be successful in school, I knew that the fight to get her services was going to get increasingly difficult if I didn’t have more to prove to them. So I made the decision to get her a medical evaluation as there was one legitimate disorder for which my daughter met all the criteria. And this is the story of how my daughter was diagnosed ADHD, why I did it, and why I feel that this label has been extremely important and unimportant all at the same time.

So, yes, technically my daughter is diagnosed ADHD. The diagnosis was given one month after her fourth birthday which is typically a bit young to get this diagnosis. However, it was halfway into the school year and my daughter’s emotional issues, rigidity, and hyperactivity/impulsivity were now setting her apart from the rest of the class and requiring more attention from the teachers than they could give. So I had her behavior formally assessed by a psychologist who concluded that the behaviors stemmed from a lack of internal regulation. This is something most commonly found in children with ADHD (this was always followed up by the psychologist saying, “not that I think she has that…BUT…” as it is not her job to diagnose a child but to find the function of her behaviors). However, these behaviors are also commonly found in children with SPD, which I firmly believed was the root of all her struggles. However, the teachers were begging for an extra set of hands in the classroom because they couldn’t control her and had already told me that they didn’t believe this school was right for my daughter for the following year. So, here we were in the second preschool in two years who didn’t know how to handle my child. My options were to: A) Request that the district give her a SEIT to shadow her for the remainder of the school year and then to place her into a special education preschool program in September or B) Pull her out of school because she had become such a disruption and to try to find a THIRD preschool for the next year and hope that they would know how to meet her needs. After speaking with my daughter’s psychologist, whom she had been seeing for a year, I asked her what she thought about exploring an ADHD diagnosis at such a young age. She told me that it is clear that my daughter displayed the symptoms of the disorder and that if the label could help to get her what she needs in school than it was definitely worth exploring. I took her for the evaluation and the results were unanimous. My daughter met all the criteria for an official ADHD diagnosis.

When I was going through this process I was met with a lot of criticism. I heard countless times from others that I should not “label” my daughter. But here’s the funny thing about this “label.” Since getting this diagnosis, there has been a shift in attitude from my school district. While a medical diagnosis does not automatically get your child services, it did legitimize her difficulties to them. Before, I only had my word that she was struggling and some abstract information about her having sensory issues. Now she is a child with a disability. Her behavior hasn’t changed but what we call it has and what we are calling it is something recognized versus something that is not. Since getting this label, my district placed my daughter in an integrated preschool class which was better suited to meet her needs and she has made tremendous progress because she is in the right environment. I wouldn’t have gotten that placement without the diagnosis. Last week, in reevaluating my daughter’s needs as she transitions into kindergarten, the district requested to declassify her and place her in a general education class for September. While she is making progress, this is something I know she isn’t ready for. But then I reminded them of something…that although my daughter is age appropriate in academic skills, she struggles with hyperactivity/impulsivity and emotional behaviors as a result of her having ADHD. Their response to this was that in hearing how well my daughter was doing they “forgot” that she had a medical diagnosis and quickly they reversed their decision. She will remain a special education student in kindergarten under the classification of Other Health Impaired and she will be placed into an integrated kindergarten class. Now, again, this diagnosis didn’t automatically guarantee this decision. In fact, having an ADHD diagnosis does not typically guarantee a child anything educationally unless it interferes with their school performance. But, for some reason, in my district, this label has helped me tremendously in getting services for my daughter that I’m not so sure she would have gotten had she not had this label. And this is really the only reason why this label has been so important to us.

However, to all the naysayers who cautiously warned me NOT to label my child, here are the many reasons why this label is so unimportant to me. My daughter is sweet, kind, caring, and compassionate. She is friendly, she is silly, she is happy. These are the “labels” people see when they look at her. She does not walk around with the letters ADHD pinned to her shirt like the Scarlet Letter. That label is tucked away in a file only to be seen by the people who need to see it. Until now, nobody has known about it this label unless I have told them. I am not ashamed of my daughter’s diagnosis. I am proud of who she is. She excels in spite of the difficulties ADHD presents in her daily life. She is a shining example of how anyone can overcome their difficulties and live a full and happy life despite their challenges. Does having a child with ADHD and SPD make life challenging? Absolutely. But I have yet to meet a parent of any child who thinks parenting is easy. This has always been our life. This has always been our challenge..a challenge I don’t find any more or less difficult than what anybody else has going on with their children, typical or not. She has always had difficulties with certain things and we have adjusted our parenting and our support for her to meet those needs the same way any parent does for their child.

Just last night, my daughter and I were talking and she mentioned that she looked beautiful. So I responded, “Yes, you are beautiful but what’s even more important is that you are beautiful on the inside. Do you know what that means?” And she said, “Yes, it means I am lovely. I am a lovely girl.” And lovely she most certainly is. That is the label she is known for, that is the label that shines through…and it is the only label that matters to me.

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