I Hate Labels — 5 Minutes for Special Needs

I Hate Labels

by Kevin



                               

When our children have difficulties in school, learning or another issue which makes us suspect that there is something “wrong” we don’t many options to get a diagnosis without sending our children through testing.

I know I’ve mentioned this before but in case you are a first time reader, I’m an adult who has ADD and dyslexia. I have a daughter with Cerebral Palsy and possibly other learning issues. I write this post from the perspective of someone who has been through way too many tests and feel that I was completely discarded in the process.

When I was a child and had a difficult time reading and learning my letters my parents knew something was up. I am 35 and on the cusp of society truly recognizing issues like dyslexia. Previously kids like me were generally considered dumb and I have friends that never were diagnosed and were considered dumb because they never received the help they needed. That said you can test too much and devalue your child’s self worth easily.

Children are not dumb, and the process of trying to figure out how your child learns, and the language you use while going through the process and then naming “what’s Wrong” can be very trying. The tests are difficult for anyone and if you have a different learning style as I do then they are even more difficult. Additionally when they are administered to you as a child you know that it is not normal to be tested regularly and you eventually start to ask the same question except there is a little something added “what’s wrong WITH ME.” I know I did and realistically life became harder when I got a diagnosis of dyslexia. A number of years later I learned that it really didn’t matter because I was as smart as or smarter than many folks anyway but as a child, I held the belief that there is something wrong with me and that is why I’m being tested.

As an adult raising a child who has delays because of CP and possibly because of a learning style I am concerned about over testing my child. I know regardless of if she has dyslexia or whatever she is smart, she has great interpersonal skills and she learns well.

Are there delays? Some. Are they significant? They are not as bad as mine were. Should we test? My wife and I probably disagree on this. She wants to and is testing. I’m not going to stand in the way here, yet but I’m monitoring my daughter’s attitude and how we talk about testing. There is no what’s wrong. There is we are trying to figure out learn style so we can help you do your best. But kids are smart and introspective so I ask her if she minds the tests and as long as she doesn’t I’ll let my wife proceed but as soon as she starts to we’ll make sure that we do everything to treat and teach and not worry so much about the diagnosis after all it won’t change how we attack her learning difficulties it will just give us another name to label her with. I hate labels.

Labels are not who we are! And there is nothing wrong with who we are.

Email Author    |    Website About Kevin

Kevin is the father of 3 and in the computer business. His My Spelling Sucks is about his experiences as a dyslexic, ADD dad of a daughter with CP. He recently began the DADvocate project to redefine the image of “Dad” as portrayed in modern media. Kevin is also one of the founding board member of Let's Cure CP an organization dedicated to funding research that is looking to cure Cerebral Palsy.

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1 Tarasview January 6, 2011 at 4:43 pm

I’m sorry you felt discarded in the process… I hope my son doesn’t feel that way. Because I kind of love having a label.

I am actually extremely thankful for my son’s “label”. He has Autism/ADHD and we struggled for years trying to figure out how to help him. The label helped us to know what we are dealing with and how to help him. It made his teachers and other professionals more understanding and helped them to make reasonable expectations. It made us qualify for government funding so he has an aid at school. It helped me to realize that it isn’t all my fault.

Before my son had his label I was convinced I just sucked as a mother. Doctors told me I parented wrong. The school treated me like a terrible mother. People constantly gave me parenting advice.

Things changed dramatically after the label.

Now I am part of a wonderful support network of people who have kids like mine.

I always knew my kid wasn’t just a regular kid.

That being said I am not at all a fan of slapping a label on a kid without being VERY sure of what you are doing.

My son is only 8 so he is still too young to tell me if he really hated being labeled… but I hope he realizes that before the official label he was still labeled… it was just “the bad kid” instead of “Autism”.

2 Kevin (thedadvocate) January 6, 2011 at 11:41 pm

I know my parents felt the same way. The label helped them understand what was going on with me. The label also helped me get additional services and time for taking tests like the the SAT’s. It has it’s place however once a child is labeled they now have the label as part of their identy. Look I still wear mine even on my blog site “MySpellingSucks” but what I’m saying is that your child is not autism. Your child is your child and he will develop into a man that has to develop an identy. That process will take a long time and along the way he is going to have to integrate autism as part of that. integrating a label is difficult since so many people assign meaning to your label. Its difficult enough for a typical person to find their identy without experts telling what and who you are because of some labe.

I don’t know if I’m making sence but basically I’m trying to communicate that I feel its a parents responsibility to help your child understand he is more than his label because while you know that he’ll have to learn and understand it at some point.

3 The Domestic Goddess January 6, 2011 at 5:43 pm

I totally hear what you are saying. Our kids are kids first, labels last. The labels are an ends to a means but should never, EVER be used for excuses, to describe our kids or to justify anything. They are only useful to gain the appropriate services. Unfortunately, we’re all about check boxes and whatnot here. Religion, race, sex, age bracket, ability/disability. Sigh.

4 Jo January 7, 2011 at 7:37 am

For me there is a difference between a label and an explannation. Kids like mine have always been around often getting labelled as lazy, stupid, not concentrating, not trying hard enough, clumsy. This is what I strive to avoid by getting a diagnosis and hence an explannation: they have low muscle tone, loose joints and a probable neuromuscular condition. So they are actually working so much harder than their peers.
I think it depends what is done with the test results as well.
If the tests are done and put in a file which no one takes the time to read then that can cause more harm. Yet by having an explanation it can parents something to use when advocating for what the child needs. Rather than people sticking their own negative labels on them which are so hard to unstick.
It is a fine line though to work to develop the child’s self esteem and acheive their true potential as no one likes the tests.

5 Edna Metzger March 27, 2011 at 8:32 am

Kevin,as your mother I can tell you that all testing and lableing was done out of acompulsion to achieve the best possible life for you. Parents don’t start out with a plan to test or lable. It happens out of a natural progression to find solutions to problems their chil may have. Kuddos to all the parents that are out there struggling to do their best parenting.

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