e there can be therapeutic solutions, the home front:
Always keep in mind that when your child has chronic Lyme, he needs to be both SUPPORTED and ENCOURAGED. It's important that you base your expectations of him on how he is able to function, on a day to day basis, but you don't want him to feel like, or function like, an invalid. Have expectations of him, but keep them in line with where he is in his medical treatment, as well as whether he's having a good day or a bad day. Some families need help dealing with children with Lyme, particularly if it effects their brain, and their school functioning. That is where psychotherapy and family therapy can be helpful. Therapy can serve an important role for kids and families with chronic Lyme, but it's important to find a therapist who is at least Lyme-open, if not Lyme-literate. The kid and the parents should be involved, in a combination of individual and family therapy. The therapy should be concrete, focusing on the problems.
Now lets look more specifically at school. As I mentioned earlier, cognitive problems are common with kids with Lyme disease, as are attentional problems. Kids with chronic Lyme might find it hard to retain new information. Lyme also can effect receptive and expressive language, visual-spatial processing, abstract reasoning, processing speed. Just as Lyme disease can effect any part of the body, it can effect any cognitive process. These kids may appear to be distracted easily, have poor concentration, appear scattered, have just about any symptom of attention deficit disorder. Or if the child had ADD before
she got Lyme, her ADD symptoms are often exaggerated by the illness. These symptoms might be intermittent and transitory, given the nature of Lyme disease, making it even more difficult to develop an education plan. When I speak to teachers' groups, I tell them that when they have a child with chronic neurological Lyme in their class, the child may appear learning disabled one day, seem normal the next. She may act like she's got ADD on another day, and may appear withdrawn and fatigued the next. It's a real challenge for the classroom teacher! So what can be done to educate these children? First lets look at the issue of free and equal public education, a wonderful and radical gift our democracy has given us. Free and equal public education gives all children a right to an education in this country, this state, this county. The law protects the disabled through entitlements
, to level the playing field, so that they can benefit from an education, just as those who are not disabled can. There are state and federal bodies of law that provide for those entitlements, and they are available to all those who are disabled. They are not granted at the discretion
- the teacher, administrator, school superintendent!!
Some of these benefits are costly. There is always a push on the part of those responsible for
balancing budgets to protect our tax dollars. There is always controversy regarding which
programs should be prioritized. The result is that not all entitlements are easily gotten by those
entitled to services. But parents of kids who are seriously ill with Lyme disease need to know
that these entitlements exist, and that it is YOUR CHILD'S RIGHT TO HAVE ACCOMMODATIONS, AS
LONG AS THERE IS EVIDENCE THAT THEY ARE NECESSARY
I'd like to discuss three stages of supports the schools can provide. Most children will only need
the first stage, and when a school is cooperative, coming from an understanding that these
children are indeed ill, and that the school can be a partner in their recovery, the first stage might
be all that is needed.
The first stage is "Informal Educational Supports." These are supports that can be given to
children without any formal plans, without classification, without formal meetings.
A school administrator, for example, knowledgeable about the child's illness, and the resulting
impairments, might carefully select a classroom teacher or teachers that can develop flexible
schedules for a child, permanently excusing a percentage of 