What Can Testing People Living With Fetal Alcohol Tell Us?

What Can Testing Tell Us?

By Linda Rosenbaum

I was speaking yesterday to a mother whose child is in Grade 1 and is acting up in school. The kid can’t sit still and, in turn runs around the classroom.  He interrupts the teacher when she’s reading to the kids, he’s throwing stones in the playground, at both teachers and students.  He won’t follow directions, fidgets and gets out of his seat in class without permission.

“They want to do some testing on him, but I’m afraid of getting him labeled,” she said to me.

Whoa! Did that ever set off a trip down memory lane for me!
“I don’t want to get him labeled,” kept resonating through my brain, after she said it.

I was thinking, “Huh? You don’t want to get him labeled?  You actually think he’s not ALREADY labeled? Take it from me. He’s labeled. He’s the “bad kid.”  Though I was not close with this woman and didn’t know her child personally, I decided to share thoughts about my own situation with our son when he was in Grade 1. I’m usually cautious about sharing my own personal experiences with others, but I felt this was too important to let go. I would speak up. The mother would of course make her own decision about her son, but I wanted her to have another perspective on the situation.

When my son Michael entered Grade 1 after several successful pre-school and kindergarten small classroom experiences in a Montessori school, everything started falling apart. Like this woman’s son, he was disruptive, couldn’t sit still, was throwing stones in the playground during recess and didn’t play well with the other children.  Though I knew part of the problem was a large classroom and less personal attention, that couldn’t be the only issue.

I spent umpteen hours meeting with his new teacher and the principal trying to come up with ways to help Michael adjust to a 30-kid classroom, without demanding too much of the teacher’s time. Why should my kid eat up the time of a teacher who has so many other children to take care of?

But the teacher, who was new to teaching, basically didn’t try any of the accommodations we came up with. She saw my son as a serious behavioural problem. He was a kid who “acted-up.” And in fact, he WAS all that she said he was. The problem was, she wasn’t interested in why OR trying to do something about it.

My son was suffering terribly from all the reprimands and disdain from other kids. They started bullying him and calling him names. They liked seeing him get into trouble and purposely triggered him to see him act up. Michael became more isolated and unhappy. His behaviour was getting worse. He didn’t want to go to school anymore.

My husband and I decided it was time to get a psycho-educational assessment. Our family doctor, who had always thought of our son as just a “busy, active” boy who would outgrow his restlessness, agreed it was time. He was getting into too much trouble.

We got an appointment at the Child Development Clinic at the Hospital for Sick Children in Toronto. It was time. Michael was about to be expelled. When they let him back in the following semester, he’d go straight into a classroom for children with behavioural problems. They didn’t even consider the classroom for children with learning disabilities. Nor did we. We didn’t know if he had any.

When I told my friends about the appointment for an assessment, several were shocked, and said so –
“You’ll get him labeled.”
“A label will follow him the rest of his life.”
“Teachers will just see him as a label.”
“He’s just a busy, creative guy. The teachers just don’t appreciate how smart and creative he is.”
“They might want to give Michael drugs.”
“Michael’s just his own person. Don’t let anyone put a label on him because he’s a little different.”

I was pretty shocked myself, but with my friends and what they had to say. Why were they so adamant? What was so bad about a label? What if Michael had a learning disability or other disability?  Perhaps a physical problem that affected his ability to learn and get along with other children in school?  If we understood the problem, we could get help for him. Intervene. He was suffering with the status quo. Do kids act up and get in trouble for no reason?

I began thinking that perhaps people’s stridency against testing and possible use of medication  reflected an ideology more than it did actual concern for the well-being of my son. Some people say, teachers are bad, psychologists are bad, labels are bad, drugs are bad. Maybe, but not necessarily. I’m smart enough to know when I’m getting bad information or advice. No one knows my kid better than I do.  I’m not going to let anyone put my kid on a drug without thoroughly assessing the situation. Why should knowledge or input from other people be a bad thing?

 

Back to the original issue. Afraid to get the kid labeled?  He’s already labeled.  He’s bad.In our case, after an extremely thorough assessment of tests, exams and interviews, Michael was diagnosed with FAS (Fetal Alcohol Syndrome – now Fetal Alcohol Spectrum Disorder, FASD), brain damage caused by the alcohol his birth mother drank during her pregnancy with him. Michael’s FASD manifested itself in several ways -severe Attention Deficit Disorder (ADD), learning disabilities, mild Asperger’s Syndrome-like tendencies as well as mild Obsessive Compulsive symptoms (amongst others). I learned that children with such symptoms, particularly learning disabilities, often exhibit behavioural problems because of their difficulties communicating, understanding social cues and constant failure in the classroom. They’re acting out of desperation. I would too.

 

Though it was, to put it mildly, disturbing to get the diagnosis, we had come out of the dark. We knew what was wrong with Michael and had some direction for helping him. There were of course no easy answers about “fixing him,” but we knew Michael was no longer ‘bad’. It also helped us feel less guilty. Bad parenting wasn’t at the root of Michael’s problems, as we often feared.

 

Sure, Michael got another label to replace the old ‘bad kid’ one, but his diagnosis produced compassion and empathy from other people. Not scorn and disdain. Once Michael was diagnosed, the Toronto District School Board then actually “labeled” him using the term LD (learning disablity) as opposed to “behavioural,”  – their designation for two types of children with special needs in the classroom. He was placed in an LD class, rather than the other, but I often worried about the kids labeled “behavioural” who were sent to these classes. How many may have had problems, whether physical, psychological, emotional or environmental, that hadn’t been diagnosed and were interfering with their ability to function in the classroom?

Yes, it’s true. Michael’s new FASD diagnosis has followed him all his life (Michael is now 24). But along with it, has come a roadmap. A roadmap to help us and other people not only help him, but understand him.

 

CALL TO ACTION!! If you can relate to Linda’s article please leave a comment and let us know why. Your comments let other caregivers know their not Alone.

If you want to see more Articles by Linda please visit her site at,

http://linda-rosenbaum.blogspot.com

 

 

SIGN UP for my NEWSLETTER and get my FREE E-BOOK!

Making Sense of the Madness: An FASD Survival Guide.

You will learn how to:

  • Increase your FASD understanding and decrease your frustration
  • Sharpen your advocacy skills and strengthen your support network
  • Be a happier, more balanced and confident FASD Caregiver


7 comments

  1. How did you not know your child could have had FAS? This story does not tell if he is a biological child or adopted. I would hope if I drank through my pregnancy the doctors would know to look for those symptoms as my child grew.

  2. Hey JPG,

    Linda is an adoptive mom. I left that out on purpose because in the end it doesn’t matter if she was the birth mom or not. TONS of birth Moms never even knew they were pregnant or the risk of drinking while pregnant. A mom is still a mom no matter what happened.

  3. As a class room teacher, and as an Educational Consultant in private practice since 1983, all that is discussed in this article is indeed most familiar to me. I agree, ‘labels,’ perceptions, viewpoints, can be equally helpful as hurtful. We each are launched with a particular RNA/DNA, a pre-natal life, a birth, and the myriad of experiences throughout our childhood and most certainly into our adulthood. What is important all along the way is the understanding and knowledge that allows one to accept Self, and learn what enhances and what disrupts optimal growth, development, behavior and creativity. I invite all to peruse: http://www.apogeelearning.blogspot.com – your inquiries are welcomed, your questions will receive a response. Our stories…our challenges…our lessons…our strength.

  4. So much of what I just read from both mothers sounds like a carbon copy of the thoughts of my friends and family and the fears I myself had. My son who was diagnosied at four and a half, also went through preschool with few issues. Kindergarten was a little trickier but with a few accomodations he did ok. We knew he was busy and preferred “parallel play” but it wasn’t until 1st grade when the teacher said he needed to be in a special needs class. I fought it and feared he would never be able to go back to a regular classroom. I listened with envy to the other moms talk about the field trips and activities that happened every year for the academics that the regular classroom was studying. We did find a wonderful teacher and my son was fortunate enough to have her for two and a half years, before we made the horrible mistake of moving.

    We relocated to a small community in BC where they did not have special needs classrooms in elementary. In my optimisum I assumed that meant they had some sort of integrative way of working with childern who had special needs. Well, my son who had been thriving academically with the support of a teacher who understood him, and a school where he was intergrated in every way out on the playground with the other kids, was suddenly the forgeiner who couldn’t sit still, didn’t listen to instructions and started having toddler style tantrums. (Our move occured toward the end of fourth grade)

    By the end of 5th grade he was alone in a classroom with an aid and the school was insisting I pick him up at noon and take him across town to attend the “behavioral managment” class for the rest of the day. It was humiliating, frustrating, and demoralizing for our whole family. Because we were not Canadians, and we were there on work visa, we were reluctant to “make any waves” and it really took its toll.

    There is more to the story, but the readers digest clean up is this, my son is now 15, we are back in southern california, he is a 10th grader, who still attends special needs classes. He can participate in regular class electives and P.E. He has friends, not a ton of hang-out style friends, but plenty of the fist bumping, how are you, kind. He had a date for homecoming last year and plans to ask someone this year. This is our first school year with out perscription meds, we spent the summer trying mega doses of krill oil with some zinc and some acupressure and chinese herbs. This cocktail is not a miracle, he certainly does not have the focus that concerta gave him, but, it does take care of his fidgets, and eye flutters and other self soothers. And his height and weight have improved with the return of his appetite without the conserta.

    When they first wanted to put him in a special class all I remember saying to the wonderful resource teacher was, “I hope one day he can just be average” and she got so angry with me. Telling I should never wish for such a thing. Well, I can’t help it, I know the spirit of what she was saying and I believe in it whole heartedly, but you never want to see your child struggle for the things that come so easy for most. Most days I feel blessed and thankful that he is who he is and for everything he has taught me, but every once and a while I have a “welcome to Holland” moment and have a good cry. I suppose in the end its not that different then any other mother and child.

  5. Thank you for this story. As an adoptive mother, I am well aware of the problems that face my 2 year old. Having been exposed to drugs and alcohol in the womb, she already exhibits sensory issues related to this. I am thankful that I have already established her with early intervention, ST, PT and OT. They have made tremendous strides with her already. To hear someone else that agrees with labeling a child for their benefit, is refreshing.

  6. I can relate in so many ways to this article. First I am a teacher and I must hear ” I don’t want my child labeled” a million times. My response normally is “Well if I went to the Dr and had cancer would i want him to tell me I didn’t have cancer to make me feel better or to get the real diagnosis to get the help I need?” Some parents get it others do not. But I love the he is already labeled response.

    In my own case my daughter has a ton of issues and I went to my doctor and said I am pretty sure she has FASD. He says why would you want that label. That is the dumbest label ever, you can do absolutely nothing with it but cause shame to her for the rest of her life. He also told me there is no test that can diagnosis it, that FASD is all just a personal opinion. He then proceeded to tell me he would write a diagnosis for PDD right then for her that I could take to school. I declined, decided to go home and see what PDD is and realized how the Dr was trying to get me to use a label of something that did not apply just to make me feel better.
    Tomorrow I go for testing that I have waited for 8 months. I don’t know what is in store or if she will be diagnosed but after reading all of the literature I am 99% sure she has it. I just want the resources available to her so I can do the best I can to help her.

  7. Thanks for this discussion. My 3YO adopted daughter has FAS (confirmed) and I have mixed feelings about the label. On the one hand, I am glad that we know this so we know how to intervene with appropriate therapies and other tactics. On the other hand, I dread giving this information to her teachers, etc. as I fear that she will be written off as “can’t learn” or “mentally retarded” (her IQ is estimated in the normal range or jsut below – but not in this category). I prefer to provide them – or at least focus on – her other diagnoses of apraxia/dyspraxia, mild CP, ADHD, and sensory integration dysfunction – as that is what we are focusing on overcoming anyway. Although I love it when therapists and others who see her long list of diagnoses (including FAS) before they meet her are pleasantly surprised at how well she is doing.


Leave a Reply

Your email address will not be published. Required fields are marked *