Miscellaneous Info

  • MichaelAnn will lay herself down on her "pillow bed" in the living room or the floor when she is tired.  She is allowed to nap at home and naps anywhere from a few minutes to over an hour.
  • MichaelAnn will come home from school & lay down/nap, sometimes until supper.
  • She can play for hours with her bead garlands; taking them out of a box, flipping them, making piles with her feet.
    • Untangle the beads for her at least once a day.
    • I ask her to help and give her a pile to "untangle" while I untangle the rest.  Then trade.
MichaelAnn plays primarily with musical instruments or toys that can be activated by touch.  She can usually "play" with these herself if they are available to her.
She does not typically hold on to objects to play with them, with the exception of her beads and some musical instruments (drumstick, bell, mallets).
  • Introduce different objects and toys to her
  • Show her how to use them (she may not be watching directly).
  • Hold your hand out to her and ask her to sit down with you. 
    • (Don't force her if she doesn't want to sit down, just keep talking and playing with the item until she wants to join in)
  • Show her again how to play with it, and then hold the toy out for her.
  • Praise her if she touches or holds it.
  • If she doesn't touch or hold it, help her hold it using your hand on top of hers.  She may just touch it and pull her hand away, praise her.
Introduce MichaelAnn to new games & toys.  Show her how to play with them.
  • Play pretend with her (e.g. sometimes we pretend we are going to the beauty shop to get our nails done when it's time to clip her nails).

Play "my turn" - "your turn" when introducing new objects for play.

MichaelAnn likes to spend time in her bedroom.
  • She likes to listen to her radio which is on the country station, CDs, iPad or MP3 player with her country music on it.

MichaelAnn will spend all day in her room if allowed.  Ask her if she wants to go into the living room.
  • Ask "MichaelAnn, do you want to go into the living room?"  while you are holding your hands out to her.
  • It may take her a little while to process this so remember to wait a few seconds with your hands still out to her.
  • She will reach for you hands if she wants to go into the living room.
    • Assist her into the living room.
  • She will ignore you, maybe even turn away from your hands if she wants to stay in her room.
    • Acknowledge her choice and let her know you will check a little later if she would like to go into the living room.
      • E.G. "Ok, you can stay in your room.  I will come back in a little bit to see if you want to go in the living room then."

Read books to her.
  • Show enthusiasm as you read.  Read the story with expression.
  • Comment about what's happening in the story.  Point to pictures and talk about what's happening in them.
  • Finish the story even if she doesn't seem to be listening.  She is probably still listening.
    • Most chapter books you will not be able to finish in one setting, just recap the story when you start again.
  • Read books she likes over & over.

  • MichaelAnn uses a walker at school every other day & the other days will stand in a stander.  You will be shown how to use these.  The stander will be used at home in the summer.
  • MichaelAnn wears ankle braces and you will be shown how to put them on.
  • Stretching must be done to loosen up the muscles of her legs and ankles.  You will be shown how to do the stretches.
  • Stretching or range of motion should be done on MichaelAnn's upper body.  This can also be done through out the day in normal activities of the day.
  • MichaelAnn is having a lot of difficulty with her left leg and foot.  At times putting very little weight on her left foot/leg.

  • When doing something with MichaelAnn - taking a walk, shopping, eating - talk about it.
  • Introduce MichaelAnn to new experiences and new places.
  • To much external input (e.g. large number of people, too much activity happening around her) may shut her down, make her fussy and/or she may try to go to a quieter room.
    • She may go to a quieter area or you may take her (e.g. her room, the front room at home).
    • Let her listen to her iPad/MP3 player with the headphones.
MichaelAnn is using her legs & feet for many things.
  • She takes her cover off (she cannot put them back on & needs checked throughout the night).
  • Take her shoes & socks off.
  • Plays with her beads.
  • Plays with you.

  • MichaelAnn may look to the same object/person/thing numerous times.  She is interested in it but doesn't know how to interact with it.
    • Bring her the item.
    • Talk to her about the item.
    • Reinforce her if she touches the object.
    • If she doesn't touch it after a few times help her in interacting with the object.

Music can help break through the apraxia.

Most of the items that she plays with are musical.  The desire to play with these is so powerful that she doesn't have to think about how to play with them, it just happens.

  • (Taken from The Rett Syndrome Handbook)  Motor apraxia is the body's inability to carry out what the brain signals it to do, i.e. difficulty to perform purposeful movements and actions in spite of normal mobility.  Simply put, apraxia is the inability to coordinate thought and movement.  It is the most fundamental handicap seen in RS, and involves all body movements, including speech and eye gaze.

  • UPDATE 2/2013:  MichaelAnn had been diagnosed with Rett Syndrome for years.  She never tested positive for this but was diagnosed clinically.  Her diagnosis changed the end of 2012 when she did test positive at a research lab for a form of Neurodegeneration with Brain Iron Accumulation (NBIA), Beta-Propeller Protein-Associated Neurodegeneration (BPAN).  This has been confirmed at an accredited lab in Oregon.  BPAN has many of the same characteristics as Rett Syndrome.

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