Assessment - What Does this Really Mean for Your Child?
By Marilyn Lash, MSW
Assessment is a term used by professional case managers. It can involve anything from determining a person's need for intensive rehabilitation to setting up temporary home health care to developing a financial plan for life long care. Therapists and educators and also use assessment to identify needs, strengths and difficulties as they design treatment and educational plans. Assessment is a preliminary and necessary step before setting goals.
While formal testing, examinations and consultations are often used by professionals in this process, assessment is a skill that need not be limited to doctors, case managers, therapists or educators. Parents are also capable of assessing their child. Once you take away the jargon, assessment really asks the fundamental question of all parents after their child has had a brain injury, "How has this affected my child?"
No one will ever know a child better than parents. They see their child in all types of situations - when rested or tried, when relaxed or under stress, when focused or confused, during the day or at night. Parents are also eyewitnesses to their child's ongoing recovery from the brain injury as well as their child's ongoing growth and development.
Yet too often, parents voice frustrations of not being taken seriously by medical or rehabilitation staff. As one parent said, "The only initials I have after my name are MOM." Sitting in a roomful of educators at a special education team meeting can be intimidating as reports are given and goals and objectives negotiated.
Rather than feeling like an outsider, parents can and should play a central role in any discussion about their child. They have unique experience and perspective. The ability to quickly and accurately describe their child is a skill that parents can use repeatedly whether they are meeting with the neurologist, speech and language pathologist, neuropsychologist or special education coordinator. Think of it as putting together a verbal snap shot of your child. Ask yourself, "What are the most important things for this person to know about my child?"
As children leave the medical or rehabilitation program, parents become the critical link for passing on information to educators, consultants, and others who may be less familiar with brain injury. By developing this verbal picture, parents can help others understand their child. This is the first step in negotiating or advocating for services.
Step 1.
What needs to be included? There are some fundamentals or basics to include:
§ Current age of child
§ Length of coma
§ Age when injured
§ Medical & rehabilitation treatment received
§ Cause of injury
§ Current grade in school
§ Severity of brain injury
§ Changes seen at homeChanges seen at school
Example
My son, Tom, is now 14 years old and in the 8th grade. He was 11 when he had a brain injury after being hit by a car while riding his bike. His injury was so severe that he was in a coma for 6 days. After spending 2 weeks in the hospital, he was moved to a rehabilitation program where he stayed for 6 weeks until he came home. While he has physically recovered really well, school is much harder for him now and he repeated the 6th grade. His biggest problems are his short-term memory. He's having a much harder time in school this year since he changes classes and teachers 6 times a day. At home, we notice that he still needs more sleep and everything is just a bit harder for him when he gets overtired.
By giving specific information about Tom's injury, the effects are clear. Compare the above example to the parent who focuses on dissatisfactions with the school.
The problem is that the teachers just don't understand brain injury and don't know how to help him. I've tried talking to them and nothing has changed. He stayed back last year and he's still failing three subjects this year. They've got him in special education but none of the aides have had any training in brain injury so how can they help him? I don't know what to do next.
While this parent has legitimate concerns about the school's experience and training, the focus here is on the what's wrong with the school, not how to help the student. When this approach is taken, it usually results in a stand off with teachers becoming defensive while parents' frustration and anger mounts. There is a time to blow off steam and there is a time to build relationships by sharing information. In the example above, educators still know little about the child, but they know a lot about this parent's feelings.
Step 2
Once the basic history of the injury has been given, parents can describe their child's abilities and needs. When thinking about this, consider...
§ What are your child's strongest abilities?
§ What are your child's major difficulties?
§ What help or services is your child receiving now and how effective are they?
§ What other help do you think is needed and why?
Example
Tom has great social skills. He's a great talker and can charm anyone. It's one of the ways that he compensates or covers up for his difficulties. But that's also why it's hard for his teachers to understand that he needs special help. He's easily distracted and has trouble organizing himself because of the damage to his frontal and temporal lobes. That's why his homework is often late or incomplete. We know he can do the work, it's the organization and paying attention to his work that's hard for him.
At home, we now go over his homework assignments before he starts, check midway through, and then double-check that everything is done before he goes to bed. This has helped a lot. The problem is that he doesn't get a head start on his homework at school, so it takes him all evening to finish up. I'm going to ask the aide who works with him at school to set up a similar system in his homeroom and study periods so he can get an earlier start on his homework.
Step 3
Assessing the effects of a child's brain injury is an ongoing process for parents. It is constantly changing as your child grows up and as school changes each year. The following tips can help parents describe their child as they advocate and negotiate for the help and services that are needed.
Compare abilities before & after the injury
§ Look at changes over time
§ Look at changes in behavior at home
§ Talk with your child
§ Keep track of grades at school
§ Talk with teachers, therapist and specialist
§ Review educational plans, medical and rehabilitation reports
§ Set up a 3 ring binder notebook to organize reports and information
By using these skills, families can have a more active role in working with educators and therapists to understand the needs of their child and to develop programs and services that will help their child.
This material is provided by:
Lash & Associates Publishing Training Inc.
708 Young Forest Drive, Wake Forest NC 27587
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