In the last three posts, I discussed the emotions of the adults involved in the IEP process, not because the adults are the most important, but because they are the most responsible. How the adults in the situation choose to behave and the decisions they make affect the course of the lives of each individual child who requires special education forever. And, I really mean forever.
No child is served by ignoring how the special education process directly impacts him or her. In fact, the impact that many of the decisions made by the adults in the IEP process have on children is required under the law to be measured. Measurable annual goals, as required by 34 CFR 300.320(2), look to determine whether the interventions and approaches decided upon and agreed to by the IEP team resulted in success. For the most part, the law is very student-centered.
Assessment can be a very grueling process for a child, particularly a young child. The nature of the suspected disabilities being assessed also plays a role in just how much standardized testing a child can tolerate in one sitting. Children with low motor tone can fatigue easily when being asked to perform paper/pencil tasks. Children with severe attention deficits can’t stay on task more than a few minutes at a time. Children with autistic spectrum disorders often have a hard time with the fact that the testing is not a normal part of their routine and the disruption to their predictable schedules can sometimes be enough to provoke non-compliant behaviors or tantrums, compromising the assessment process altogether.
By and large, children do not want to be disabled. The severity of the disability and the cognitive abilities of the child both impact the degree to which the child responds aversively to being “different” from his/her peers. Children with low cognition may not really comprehend just how different they are.They may come to terms with their circumstance rather quickly, regardless of whether they fully understand their situations or not.
I once worked as a job coach for developmentally disabled adults, providing supported employment services. One of my consumers was a fairly capable man who lived on his own in an apartment and had a full-time job working maintenance at a local driving range. He was very mildly cognitively impaired. He suspected that he had been brain injured in vitro during an incident of domestic violence, as his father regularly beat his mother throughout their marriage, including when she was pregnant. We were talking about life in general one day and he revealed this fact to me and the fact that he sometimes wondered what he would have been like if he hadn’t been disabled. He shrugged and summed things up by saying, in so many words, that he’d probably be living in his own place and working a full-time job, so really he didn’t think he had ended up in too different of a situation than where he would have otherwise ended up. I thought what he said was brilliant.
One of the attorneys I work with told me of a friend of his whose son was born with Down’s Syndrome. Intervention had been so successful for this young man that he lived independently, had a job, and easily accessed public transportation and all the entertainment and cultural enrichment opportunities that exist in the Los Angeles area. He could be frequently found taking the bus to work or some local attraction or point of interest. He was so confident in his abilities and proud of his own personal growth that he would tell people that he “used to be retarded,” judging himself against his own personal accomplishments more than anything else. What an example!
But, I’ve also worked with kids who started out with learning disabilities that went unserved for years only to develop serious emotional health problems after years of academic failure. These feelings of low self-esteem bled over into other aspects of their lives, undermining their friendships, family relationships, and responses to life in general.
A learning disability is quite unlike a cognitive impairment. People with learning disabilities have normal to above-average IQs. They just have a hard time processing certain types of information. A visual processing disorder means the person has a hard time making sense of what he/she sees. An auditory processing disorder means the person has a hard time making sense of what he/she hears. That has nothing to do with intelligence.
When perfectly intelligent children fail at something that other perfectly intelligent children can do without even thinking about it, it can make them feel bad about themselves. They often don’t want other people to know about their disabilities. They’re embarrassed by their shortcomings. Parental attitudes about these kinds of things can have a huge influence on how the kids respond. Parents who are more interested in “keeping up with the Joneses” rather than true quality of life are more likely to be ashamed of having a child with learning disabilities than parents who don’t. Parents who are constantly worried about what other people think can do a lifetime worth of harm to a child with a disability. But, I know many perfectly grounded parents who have made it perfectly clear to their kids that they love them no matter what and the rest of the world can go jump in a lake for all they care and their kids are still emotionally hung up over being “different.”
Age has a lot to do with this, too. Younger children are more forgiving and the younger kids are, the less they all know and the less children with disabilities (particularly “hidden” conditions like learning disabilities) appear to be different from their peers. But, as children get older, the expectations placed on them academically and in terms of social sophistication increase. The kids with disabilities will start to lag behind their peers in some ways and the gaps will start to widen. It doesn’t take long for kids to realize that this disparity is happening.
If the friendships formed in the early years have been nurtured and fostered into a healthy support system, the children with disabilities are more likely to continue to be accepted by their peers for who they are.? But, kids who end up moving away or who never really formed solid friendships in early childhood (which really speaks to the degree that the adults in their lives facilitated their friendships in a healthy way) can end up losing their friends as the differences become more apparent.
It is common for children with disabilities to feel like their lives are spiraling out of control. If the adults involved in their lives can’t achieve a collaborative energy amongst themselves and there are evident disputes amongst the adults about how the child’s needs can best be tended to, that feeling that life is in an out-of-control tailspin is greatly heightened. Children rely on the adults in their lives, particularly their parents, to be their rocks and foundations.
How issues are approached is vitally important. I absolutely hate going into situations where justifiably frustrated parents have hired attorneys to take their school districts to due process and the next day the kid goes to school and tells his/her teacher off, ending with “My parents are going to sue you!” That helps absolutely nothing.
Because the decisions adults make will change the course of a child’s life forever, when IEP teams are working together well, I believe it’s important for the children to sit in on at least a part of their own IEP meetings. As they get older, it’s important that they participate as members of their own IEP teams.
Parents have to be careful with this, though. If the purpose of the IEP meeting is to resolve disagreements about what should be in the IEP, it can be upsetting to children to be present during those discussions. It depends, though. I’ve seen various situations over the years where it was appropriate to have the kid there to settle the dispute once and for all while in other situations, kids had been reduced to tears or their parents held back on advocating for what they believed in because they didn’t want to upset their children (and, in the latter instance, that was the whole reason the school staff had insisted that the children participate).
Ultimately, the adults involved have to remember than an IEP is all about the child for whom it is being written. Not only do the adults have to respect each other, they have to respect the child and how their decisions will emotionally impact the child both in the short- and long-term. The child may have to do something he/she finds unpleasant in the beginning because it will lead to successes that will ultimately allow him/her to feel good about him-/herself. It’s up to the adults to make sure that the proper supports are in place so that the child’s initial aversion to the task does not undermine the overall goal, which means being attentive and properly responsive to the child’s emotions.