A child with tuberous sclerosis

Discussion in 'Special Education' started by Miss J. Pre-K, Nov 14, 2008.

  1. Miss J. Pre-K

    Miss J. Pre-K Comrade

    Joined:
    Aug 10, 2008
    Messages:
    384
    Likes Received:
    0

    Nov 14, 2008

    Anyone teach a child with tuberous sclerosis? I teach a four-year-old with it, and she seems to have many autistic behaviors--she rocks herself, flaps her hands, picks up objects and fiddles with them before throwing, etc. I'm a regular preschool teacher and I have one assistant with 18 children, including one with mild/moderate autism as well. We're about to go crazy with this child. We are constantly having to go around and pick up objects she throws, the only saving grace is she will now go to her rocking chair and rock or twirl around to music for a couple of minutes. For the past two days, she has ate wood chips on the playground and thrown them up before we could get to her. I feel like I have no assistant because she constantly has to be with this one child. I'm terrified that she is going to choke before we get to her one day. Any advice is much appreciated! :help:


    This is from tsalliance.org if you've never heard of it (I hadn't):
    Tuberous sclerosis complex (TSC) is a genetic disorder that causes tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. You will see it referred to both as tuberous sclerosis (TS) and tuberous sclerosis complex (TSC). The term TSC is used in scientific literature to distinguish tuberous sclerosis complex from Tourette's syndrome.

    The disease affects some people severely, while others are so mildly affected that it often goes undiagnosed. Some people with TSC experience developmental delay, mental retardation and autism. However, there are also many people with TSC living independent, healthy lives who enjoy challenging professions such as doctors, lawyers, educators and researchers.
     
  2.  
  3. TeachWildThings

    TeachWildThings Comrade

    Joined:
    Jan 7, 2005
    Messages:
    320
    Likes Received:
    0

    Nov 14, 2008

    I know of only one, (a family member of a friend) It does appear she may have "autistic like" behaviors, which may or may not be autism, but perhaps tumors in the brain. At any rate, you as the teacher need help with the "behaviors" regaurdless of diagnosis or the "why." That said, where behavior plans & programs can do wonders for some autistic children & others with similar disabilities, it is not always a gaurantee. Also, if the behavior is related to the tumors causing havoc in the brain then a behavior plan may never work because the overall issue is physical. Much in the same way with TBI, many of those children were typical to begin with & no amount of therapy can change the physical damage. There's no way to know without tests & we all know those are sometimes out of reach for our families.

    If you haven't already, document carefully any "dangerous behaviors" (like the throwing & wood chips) This student most likely could use a one on one assistant for the safety of both herself & the class. This will also save you a potential lawsuit. Let your administration, psych, Spe ed director, ect know what's going on. Get that documentation & don't let them brush you off.
     
  4. Miss J. Pre-K

    Miss J. Pre-K Comrade

    Joined:
    Aug 10, 2008
    Messages:
    384
    Likes Received:
    0

    Nov 15, 2008

    From what mom has said, this disorder was present from birth. This child has a twin brother who's completely normal, go figure. This child has an IEP and has three therapists who see her (for a total of 4 mornings a week). However, because she doesn't want to work with them, they tend to work with the child with autism who will somewhat cooperate. I've told my director we need a one-on-one, I've told her therapists we need one. Their compromise is that the rotating assistant will spend mealtimes and naptime (her mom picks her up at beginning of naptime), because she throws her cup and food. This rotator has no training or experience with this type of children and often this little girl gets into stuff before she can get to her. Maybe I should start documenting how often she puts objects in her mouth and throws them. I don't know why noone advocated for her to have a one-on-one or why it wasn't in her IEP. I started the school year late, and so I missed a lot of the beginning stuff like IEP meetings.

    My family services worker (kind of like a social worker for Headstart) suggested I put up all the manipulatives that are small enough to choke on. I could do this, but that robs the other children of learning opportunities with small objects (grasping, picking up, sorting, etc.) And much as I'd like to, we simply can't get rid of the woodchips on the playground, it's our only ground cover.

    I thought I knew a lot about disabilities--through both my degrees I've had 8 classes on them. I know a lot about autism and have modified for my child with autism as well as my ESL students. But I feel so helpless with this child.
     

Share This Page

Members Online Now

  1. TamiJ,
  2. Backroads,
  3. MissCeliaB
Total: 455 (members: 4, guests: 433, robots: 18)
test