To label or not to label, what’s a parent to do?!

I was in a doctor’s office. The nurse was taking down the information before the doctor comes in such as what medicines, my general medical history, and why I was there.

I told her, “I am here because I had a seizure.”

The nurse looked up at the medical file, on the computer screen. After a minute or so of reading my file she said, “Now don’t tell me that, tell me what happened instead. You don’t want a seizure on your record.”

I was startled! I had a seizure, no doubt witnessed by a neurologist. I was there to get help stopping them. “Why?” I asked her.

She told me, “Because if you say you had a seizure then you can’t drive anymore. You don’t want that!”

My thought was I don’t want to be driving and you shouldn’t want me behind the wheel if I did have a seizure!

As much as I don’t want the label of seizures, I NEEDED it. I don’t drive and will most likely never drive again. For myself and the people around me I needed a label and the medication, doctor, and restrictions that label place on me. Seizures don’t change WHO I am they describe a small but important part of me.

To label or not to label… One of the  biggest hot button topics of the special needs world. Why does it bother parents, educators, and outside Nosey Nellies so much? I believe because everyone sees a label as something totally different depending on from what direction they are coming from.

Lets start with Educators. A label is what they need to fill in the blank in their paperwork to mover forward dealing with a child’s special need. This magical label also helps them pigeon hole a child into what other children with that same label are like for years to come. A label makes IEP meetings easier. Choosing classrooms for this child easier. Choosing how this teen should graduate. I could go on and on. In this case the labeling is NOT a happy, good thing for your child.

To pigeon hole any child/teen/adult is wrong. I have seen children blossom that had been previously written off by a doctor as not educable. Each child MUST be delicately and carefully tended for as long as they need to grow and flourish. In this case the inability to change the course the label sets your child on is the major problem.

Lets talk about the Nosey Nellies. You know them. The people who do not have a special needs child but have thought about it. Along with those deep thoughts they have lots of ideas that will help fix your child right away. Early in my homeschooling career I ran into a Nosey Nellie. She told me that all children can learn, labels were an easy way to get out of your responsiblity as a parent. It was my impatience that was causing the learning problems. She then slapped me with the old, “All kids are gifted. you just need to find their gift.”

After having a gifted child and special needs children and a pleasant mixture of the both. There is a difference and it is belittling to tell me that my slow learner is just fine, it’s all my fault. <sigh> She is not rare. I have heard that refrain or similar again and again. One gentleman said children didn’t really have autism it was a parenting issue. Thankfully all was well because he had a great $1500 program that could fix the mess, I had made. Again gee thanks… No NOT really.

Please if you don’t know what it is like to parent and teach a child with special needs it’s okay to say “I don’t know enough about special needs to speak to that issue.” Or try sympathy, “It sounds like you have a tought job. I wish I could help more, but I don’t know enough about this issue to be helpful.”

Honesty is always welcome.

 Parents are still left with the question should I push for testing and thus a possible label or not. That is up to you! You are the captain of your family and educational ship.

As a homeschooler you can test or not test or even better test only certain areas. As customizable as your education is with your child so is the testing you can choose to have done. If you choose a private tester that information need never go any farther than between you and your husband/wife at the diningroom table.

This is a huge question and one that plagues many of us. Instead of me telling you what is right for your family which I can’t and shouldn’t. Let me share with you some criteria that might help you make that decision yourself.

1) Is your child more than 2 grade levels behind in any subject? That is the normal educational cutoff between a possible learning disability or a slower learner.

2) Will your child need accommodations for tests, college, or work? If so you should strongly consider getting them professionally tested before the age of 18 to be sure they don’t have extra hoops to jump through later.

3) If your child feels like they are “so far behind”, or “stupid.” You want to be sure to encourage positive thoughts about their ability to learn, even if it is slower than the world’s “norm”. There are times children know they aren’t learning normally and really desire to be tested and given a roadmap out of the rut they are in.

4) If there is a reason you need to show legally your child’s disability such as SSID, or legal guardianship. This can be extremely important if your child’s disability is not so easy to see but impair their self care skills. Take a teen that is overly touchy, overly accepting of ‘friends’ they don’t understand the difference between a possibly dangerous social situation and a safe one. With proper testing you will be able to show the court the disability and continue caring for and keeping your teen safe even if they don’t fully understand.

5) If you have run out of ideas, or frustration runs your home. Testing may relieve some of the pressure you are putting on yourself and your child.

***Any testing your child/teen has done should come with a detailed description of what is wrong and how the doctor/evaluator came up with the diagnosis.

***A clear description of accommodation, remediation, and tutoring/therapy that would be helpful.

Testing in some situations can help you relax and give your child as much time to grow and mature as possible. I know it’s not easy, I have been there. I hope these tips give you some guidance as to when to consider testing and when to wait.

We have chosen a mixture of testing for some problems and not testing for others. We are always open to adjusting our ideas on testing. Homeschooling allows us to wait long past the time the school system would have demanded testing. I am so thankful we have that flexibility.

In the end parents are in charge of whether or not to seek testing that might label a child. One thing we need to focus on is a label is not a manacle on your child’s foot holding them back from succeeding. A label is a description of a small portion of your child’s life. It can assist in others understanding your child more. A label can also help you focus your search of learning material to the most helpful material available.

In the end others should stay out of your decision to test and possibly label or not. You are in charge and responsible for this weighty and very important decision.

How have you dealt with Nosey Nellies and Educators? Do you have additional reasons testing should be considered?