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Tips and Tales from a Reformed Anti-Labeller

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Let me paint a picture for you. It was the year we put our “twins” in preschool. They were three and a half years old and we had a new baby so I decided to have them go to preschool a few afternoons a week to give me some extra time to homeschool our older kids. It all seemed like such a smart plan until the phone call from the preschool teacher.

But before I get to that, there’s something you should know about me. I was that mom, you may know the one. Not only was I determined not to put a label on my child, I was also not going to have her officially diagnosed. No one was going to put my daughter in a box!

We knew that given our daughter’s prenatal history, she likely had FASD (Fetal Alcohol Spectrum Disorder) and we strongly suspected that she also had ADHD, but I had no intention of having her assessed. I didn’t want her to go through her life being judged because of her label. I wanted people to get to know my precious girl for who she was, not by a series of letters set out to define her.

The day the preschool teacher called was the first crack in my preconception about labels and diagnoses. She was a kind and experienced educator who had been teaching preschool for over 30 years. She began by telling me what a delight Einstein was to have in the class and how he was settling well into the routines there.

She then asked if there was anything about Miss Optimism that she should be aware of. I paused, unsure of what to say. She went on to explain that Miss Optimism was having many challenges in class and it was quite disruptive. She said that in her years of experience, she felt that there was likely something going on beyond just her being an active child.

I explained that it was possible that there were reasons behind her behaviour but that I had decided against pursuing a diagnosis and was strongly against labelling her. She patiently explained to me some of the positives that she had seen in her career of having a child diagnosed and invited me to come in the next day to observe the class.

The next afternoon, I stood outside the glass walls of the preschool. I knew my daughter well and expected to see her being more active than most of the kids in the class, but was surprised by how extreme it was. I observed dozens of children following the routine, hanging their backpacks and coats up and heading to sit on their chairs.

My daughter spinning and spinning, throwing her backpack in circles, accidentally hitting another child with it in the process. My daughter rolling around on the floor while the rest of the students sat in their chairs. My daughter lying under the table at snack time licking the floor while the other kids sat around the table eating quietly. My daughter repeatedly getting up during story time, an aide gently tapping her shoulder cuing her to sit down again until finally, my daughter rolled away from the aide’s reach and ran off to one of the play stations.

My daughter licking other kids. My daughter chowing down on glitter. My daughter climbing up on everything in sight. My daughter making a beeline for the exit. During circle time, my daughter jumping inside the circle and busting a move while all the other kids did what they were supposed to be doing. My daughter disrupting the class. My daughter being disregulated. My daughter struggling.

Watching that scene broke my heart.

Afterwards, the teacher suggested that I fill out the papers to have my daughter assessed. She explained that if we had a diagnosis, instead of being angry and frustrated with my daughter, others would be compassionate towards her and be able to know what strategies would be effective for her. We began the road towards getting a diagnosis for her.

We got the diagnoses we expected, but we also got an additional diagnosis. Miss Optimism was also diagnosed with Sensory Processing Disorder, something we had never heard of before. That started us down a path of being able to find real solutions for her that worked. Her life improved dramatically. Our home became more peaceful.

If you are resistant to having your child diagnosed or labelled, I want to share with you some important things to consider.

Your child doesn’t wear the label on their forehead.

After your child receives a diagnosis, that is held in confidence between the person who did the assessment whether it be a doctor or psychiatrist or other professional and yourself. You choose who has access to this information. They may encourage you to share this information with your child’s school, but ultimately, it is your decision who knows and who doesn’t.

While I share my children’s diagnosis with some people that I deem appropriate such as therapists, certain people in the school and their main doctor, I don’t necessarily share the diagnosis with other doctors, coaches and teachers.

An example would be that if I take my one child in to get stitches, the emergency room doctor does not need to know that they have ADHD but if I take another one of my kids in to get stitches and they are completely hysterical, it is relevant and pertinent information for that emergency room physician to be told about their PTSD and sensory needs.

I decide who to tell and how much to tell on a case-by-case, child-by-child situation. Since five of my kids have a variety of special needs and diagnoses, I’ve had a lot of practise in this area and I think I do a pretty good job of navigating it well most of the time.

Another important thing to note here is that as your child gets older, they can and should be part of the decision as to who and how much to tell regarding their diagnosis.

Labelling opens door.

Once you have a label for your child, there are avenues available to you that otherwise wouldn’t be. There may be support groups (for you or your child), respite programs, research studies, trainings, effective medications, and relevant programs that are suddenly available for you and your child to access.

Labelling can lead to funding.

Depending on where you live and the type of insurance you have, having a firm diagnosis can mean funding for your child or even for your family. Many school districts require a diagnosis before you can access services such as an aide and assistive technology.

Our youngest daughter has a full time aide in school as well as access to assistive technology for her hearing loss. She also gets sensory breaks, is being seen by speech language pathology through the school and has a team of professionals such as an educational audiologist advocating for her and working with her.

Where we live, families of children with certain disabilities are able to access funding for respite, sibling care during appointments, travel costs associated with appointments, and even in some circumstances, medication. There can also be tax breaks depending on your country and the level of your child’s disability.

Labelling can lead to answers.

Once you have a definitive diagnosis for your child, you can begin to research solutions, therapies and treatments. You can find the right professionals to work with your child.

I like having answers. I always research as much as I can after one of our kids receives a new diagnosis. I feel better knowing as much as I can so that I can find ways to help them reach their fullest possible potential despite the obstacles in their way.

Labelling can lead to support.

While finding an accurate diagnosis can help your child to find the support and programs that they need, it can also help you find the support that you need. You can seek out other parents who are walking the same road as you are. There is nothing in the world that is better for the parent of a child with special needs than to find that “me too” moment.

To label or not to label?

Your child cannot be defined by a single diagnosis. Their diagnosis is only a small part of who they are, but it is a piece of who they are. While there continues to be stigma with some diagnoses, especially those pertaining to mental health, you as the parent have ultimate control over who you tell and how much you tell them.

When I share my child’s diagnosis with someone, I usually also include some tidbits about who they are as a person. I like them to get a more well-rounded picture of who my child is. I recently filled out an IEP form for my youngest daughter and under the question “Is there anything else you feel that it is important for us to know?”, I wrote “she loves to dance”!

While ultimately, the decision to search out a diagnosis for your child is a very personal one, I chose to share my experience with it in the hopes that I can make the road easier for another family. I wish I had sought out assessments for all of my children who had challenges years sooner than I actually did.

Some other articles that you may find helpful on this topic:

A Label by Any Other Name: One Teacher’s View of Diagnosing a Child

6 Reasons to Celebrate an Autism Diagnosis

Labels Don’t Define: They Enable


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Comments

  1. Good for you! I can really relate– but in the end, I realized that a label sometimes is the only thing that can get your child the help (specific help) he or she needs.

  2. Our story is almost identical to yours. It started for my son in preschool and now 15 is virtually symptom free due to a LOT of intervention and finally finding what truly works for him. A gluten Free-casein free diet supported by a developmental pediatrician who has walked us through this process for 13 years and 6 days a week on a competitive swim team to burn all of the energy.
    Thanks for sharing your story.

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