Labeling Kids with Special Needs- How Much To Share
I have a love-hate relationship with labels. They can help our children get the help they need and can help us find the support of others in a similar situation, but they can also come with the baggage of stigma and preconceived ideas. I worry about the long-term impact of labeling kids.
On a blog we posted about over-sharing (TMI (Too Much Information)- Should We Tell Our Child’s “Story”) we received this thoughtful question. I’ll give my thoughts, but this is one where I’d really like to hear how you have handled similar situations.
My son has FASD and ADHD and I often need to bring this to the attention of the school personnel-am I out of line to reveal this information? His older sisters have stopped talking about the mother very much, but for them, I don’t mention the mother’s alcoholism as it did not affect them prenatally since it started after they were born. I leave that to them to tell as part of their story if they choose. But, since it impacts my son’s daily life, I feel I have the right to inform people who need to know. Yes? No? Maybe??? Mama B
Mama B, the questions of labels is one that a lot of us face, regardless whether our kids are adopted or not. We live in a label happy society. In my experience, if your child is the slightest bit different from others, it’s easy to find some expert to attach a label. Many of us find ourselves and our kids swimming in an alphabet soup of labels—FASD (Fetal Alcohol Spectrum Disorder), PTSD (Post Traumatic Stress Disorder), SPD (Sensory Processing Disorder), ODD (Oppositional Defiant Disorder), ASD (Autism Spectrum Disorder), LD (Learning Differences/Disabilities), ADHD (Attention Deficit Hyperactivity Disorder).
I have faced the issue of labels with several of my kids and have handled it differently with each child. I don’t think there is a single “right” way since it depends on so many individual factors—what degree your child is affected, the age of your child, how stigmatizing the label, and if the label itself is necessary to get your child the help he needs.
The Need For a Name
I’ll admit that I actually wanted labels for my kids since labels make it feel like a definitive diagnosis. It is frustrating to know that something is wrong, but not have a name.
Labels helped me with researching how to help them on my own and gave a shorthand to what they or her education and often throughout life. This may be necessary and useful, but shouldn’t be taken lightly.
My general approach is to keep labels out of permanent school files if possible.
Keep in mind that when we are talking about learning disabilities, if the school system does the testing, the test results will become a part of your child’s permanent record, regardless of what you want. With one child with less significant learning issues, we opted to have the educational testing done privately so that we controlled whether and how much to share with the schools. With another child, we started with testing by the school system but found it to not very thorough. The most thorough testing we had done was at a nearby university psychology department for a nominal cost.
Labels Can Stigmatize
With my child with less significant issues, we have been able to get all the help needed from the schools without sharing labels. With another child, we readily shared labels and test results in order to get the help he needed. With that child, at the beginning of each school year (and throughout the year) we meet with his teachers to paint a full picture of his strengths and weaknesses.
Our son’s labels are not particularly stigmatizing but could limit what his teachers expected of him. We stress that we want his labels to provide support, not limits. I’ll have to be honest and say that our successes have been mixed with some failures, but all in all, the advantages of sharing have outweighed the disadvantages.
Weighing the Advantages of Sharing with the Disadvantages
Mama B, only you have enough information on your son to know how to weigh the advantages and disadvantages of sharing his labels. Fetal Alcohol Spectrum Disorders (FASD) can be both stigmatizing and limiting. I think most people do not understand the spectrum nature of FASD, and assume that all children with this label have Fetal Alcohol Syndrome (FAS), and further assume the worst possible outcome for FAS.
From an education standpoint, is the label of FASD very helpful? I would assume that the effect of the alcohol exposure on his learning abilities and behavior is the most important for the school to know, rather than the cause. Would it be possible to be vague on the cause rather than specific (“rough start in his early life before he came to us” rather than “his birth mother was an alcoholic and he has FASD”)?
Attention Deficit Hyperactivity Disorder is not a particularly stigmatizing label anymore, but sharing this label will put you under considerable pressure to medicate your child. If he is already on hyperactivity/focus medications, this is not much of a disadvantage. The school will need to know if he is taking medications (especially if administered during the school day) or if he needs significant modification in classroom settings and testing. Also, it will be important to share this information if he has an Individualized Education Plan (IEP).
With Whom We Should Absolutely Share
I should add that I think we should share all information we have with medical personnel since any information may be needed for future medical issues. I also don’t worry about labels defining my kids in medical situations.
Those are my thoughts. How have you handled this situation?
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Originally published in 2011: Updated in 2018 Image credit: gfpeck Image credit: Cuba Gallery Image credit: Alissa Maghopoy