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RE: [Families of Angelman Syndrome] Hi. I am new here.

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  • Carol
    Hi Susan, Thank you for the welcome. The weighted vest was suggested to me by a woman that works with children that have sensory integration issues. Mark
    Message 1 of 5 , Apr 4, 2006
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      Hi Susan,

      Thank you for the welcome. The weighted vest was suggested to me by a woman
      that works with children that have sensory integration issues. Mark seeks
      over stimulation and input and is seemingly "out of control" all the time.
      In actuality he is just super busy and quite hyper active. The weighted
      vest seems to center him and calm him down. There is a good site called
      weightedvest.com. I found a woman on Ebay that made them. The pressure
      suit works much the same way and it is almost like a wet/dry suit only with
      much more "squeeze" to it. It applies the same principal as a weighted
      vest and it seems to give him comfort and he really sleeps well with it on.

      Carol


      _____

      From: familiesofangelmansyndrome@yahoogroups.com
      [mailto:familiesofangelmansyndrome@yahoogroups.com] On Behalf Of Susan Hawk
      Sent: Tuesday, April 04, 2006 7:03 AM
      To: familiesofangelmansyndrome@yahoogroups.com
      Subject: Re: [Families of Angelman Syndrome] Hi. I am new here.


      Hi Carol, my hat is off to you, especially with 2
      children with special needs. Our Isabella (my
      boyfriend's little one) is 5 & 1/2 and we usually have
      her 3-4 days per week, sometimes 5 and we are
      exhausted when she goes back to her Mom's house.
      Really my hats off to all families who do this 24/7,
      because my boyfriend and I do get a few days break
      each week. Isabella is not yet formally diagnosed with
      AS but has all the symptoms. She can run but her
      balance is poor, so she stumbles and falls a lot. She
      speaks very little, only 3 words and she doesn't
      usually say them without coaxing. Mama, is about the
      only one. She still sticks stuff in her mouth, loves
      water and the toilet bowl! She has an odd gait kind
      of stiff but not too bad. She also gets over-excited
      easy, and then runs, screaming, laughing. When she
      gets like that is when she pinches, pulls hair and
      even tried to bite at times. She has been known to
      push the teachers at her pre-school and pinch too,
      especially if she isn't feeling well. She gets colds
      and upper respiratory stuff a lot! I'm intersted in
      the weighted vest you were talking about. What is the
      purpose of that and the pressure suit? Thanks, Sue

      --- cvkinnune <cvpickard@...> wrote:

      > Hi everyone. My family and I live in northwest
      > Washington. I have
      > a 5 year old son that just recently went through the
      > FISH test and we
      > are waiting the results. Our neurologist and ped
      > are pretty certain
      > that he is an AS child. It has been a long journey
      > to get to this
      > point. I brought the AS information to the ped and
      > neurologist at
      > Mark's 5 year checkups and we are finally moving
      > forward after
      > spending almost 5 years spinning in circles trying
      > to find answers.
      >
      > Mark was born low birth weight, had serious feeding
      > issues, and was
      > until this year classified as failure to thrive. He
      > finally made it
      > on the growth chart! He weighed in at 35 pounds at
      > his 5 year check
      > up.
      >
      > Food is a huge adventure for him and he eats non
      > stop. I can't
      > believe how much he can put away in one day's worth
      > of eating.
      > He walked at 14 months, never did crawl and had
      > difficulty sitting up
      > until he was about 11 months old. He got very adept
      > at rolling to
      > get where he needed. He was diagnosed with complex
      > partial seizures
      > and verbal apraxia at 15 months and was on Tegretol.
      > He is now
      > taking Trileptal. He had a grueling 10 minute
      > seizure in December so
      > we switched meds. He is responding well to this new
      > med. His
      > seizures seem to only occur in a specific REM cycle
      > or if he has a
      > drastic temperature/climate change and sometimes
      > right before a major
      > developmental shift/occurence(which really
      > fascinates me).
      >
      > We taught him sign and used picture boards to
      > communicate, until
      > about a year ago when he randomly started spurting
      > out words. His
      > speech pattern is about what an 18 month old's is,
      > but it is exciting.
      > It might not develop beyond what it is, but to hear
      > those words are
      > amazing. We use music therapy and it seems to be
      > helping.
      >
      > His behaviour is difficult to manage at best. He is
      > constantly
      > going, exploring, and has no fear or sense of
      > boundary. He loves to
      > over stimulate. He has a lean forward approach to
      > running and often
      > tumbles headfirst in to things. We can't keep him
      > out of water. He
      > beelines for it whenever it is nearby - sinks,
      > ponds, puddles,
      > toilets, etc. He is also extremely fascinated with
      > lights and
      > electricity. He has figured out every baby proofing
      > method we have
      > attempted. He still puts everything he touches in
      > his mouth. HE
      > bites, hits and pulls hair, this has been quite a
      > challenge to modify
      > this behavior. He keeps us on our toes and we are
      > quite exhausted by
      > the end of the day.
      > We are now getting much needed respite care every
      > Saturday.
      >
      > He attends the early childhood preschool in our
      > school district as
      > well as head start. He loves school. He isn't much
      > of a sleeper,
      > but I found that a pressure suit really helps and
      > during the day he
      > wears a weighted vest. I notice a huge difference
      > in his ability to
      > focus when he is wearing it.
      >
      > I also have a 15 year old with Asperger's, so life
      > is quite an
      > experience in our house.
      >
      > I had never heard of Angelman's until recently and I
      > am looking
      > forward to connecting with other families that have
      > similar
      > challenges.
      >
      > Carol
      >
      >
      >
      >


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    • bobbie toole
      Carol, Welcome to the group! I have a 3.5yr old grandson, Kye, and 2.5yr old grandson, Jase that are both Angels. Sounds like you ve been a long time getting
      Message 2 of 5 , Apr 4, 2006
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        Carol,
        Welcome to the group! I have a 3.5yr old grandson, Kye, and 2.5yr old grandson, Jase that are both Angels. Sounds like you've been a long time getting any answers, glad you were able to this far.

        At the boys last check up Kye weighed in at 26lbs and Jase at 29lbs. Kye has always had a weight problem, problem eating at first, now you can verly keep the food going fast enough for him. Jase has never had any eating problems, he has alway chewed his food well and drank well from a cup. Kye is learning to drink from a straw now and seems to enjoy it quite well.

        Sounds like Mark has progressed good. How on earth did you teach him to sign and use a picture board? We have tried different things for the boys but have never gotten very far. Kye doesn't say anything, and Jase babbles all the time, he does say about 5 words we can understand. Kye will start to pre-kindergarden this coming fall, they are working out a deal to have him picked up and brought home without having to ride the bus with the other kids. I also think he will only to for about an hour or two a day to start with. He will have an aid with him at all times. Makes us very nervous since he is sooo small for his age, but know he needs to be around other kids and learn more than what the PT and OT can teach him.

        Sounds like Mark and Jase would get along good. Jase is always on the go, exploring everything, finding water to play in, puting everything in his mouth. He has started eating paper, he will put it in and chew it like gum, usually will spit it out when we see he has it. He is just tall enough now he can turn the lights on and off, he really thinks he has done something great! He'll turn the lights on and turn around and point saying "See" That is one of his favorite words, and the first word he ever said. He, too, has figured out all the baby proofing ideas we have tried to keep him out of things. We are still trying to keep him out of the refrigerator, tried everything but putting a padlock on it. Oh, well maybe someday he will remember not to get into it!LOL

        I have never heard of a pressure suit, where did you find it? We used a weighted vest on Kye to help him look down when he was walking so he wouldn't trip over everything. I can say one thing for the boys they do sleep-most of the time! Their Dad has them trained to go to bed at 10:00pm, he gets them up to go to the babysitter at 6:00am and they usually go back to sleep for her till around 9:00am. Once in awhile one of them will pull an all nighter and stay up playing with toys, but not very often. The boy's Dad is raising the boys, so we try to give him time out on weekends and sometimes during the week we will take the boys for overnight. I work full time also, so can't keep them during the day for him, but do pick them up everynight from the babysitter and take them home for supper, I get off usually an hour before he does.

        Anyway glad to here from you, any questions or just want to talk, feel free to write-you can write my home address if wanted- sandylot_2@...

        Bobbie, grandma to Kye and Jase, both Angles





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      • Susan Hawk
        Thanks for your info. I had not really heard of that before. I heard once of an autistic girl who used some kind of device that squeezed her, because it calms
        Message 3 of 5 , Apr 5, 2006
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          Thanks for your info. I had not really heard of that
          before. I heard once of an autistic girl who used some
          kind of device that squeezed her, because it calms her
          in some way. I think that's so interesting about why
          pressure is calming, I wish I understood it! Thanks
          again Carol....Sue

          --- Carol <cvpickard@...> wrote:

          > Hi Susan,
          >
          > Thank you for the welcome. The weighted vest was
          > suggested to me by a woman
          > that works with children that have sensory
          > integration issues. Mark seeks
          > over stimulation and input and is seemingly "out of
          > control" all the time.
          > In actuality he is just super busy and quite hyper
          > active. The weighted
          > vest seems to center him and calm him down. There
          > is a good site called
          > weightedvest.com. I found a woman on Ebay that made
          > them. The pressure
          > suit works much the same way and it is almost like a
          > wet/dry suit only with
          > much more "squeeze" to it. It applies the same
          > principal as a weighted
          > vest and it seems to give him comfort and he really
          > sleeps well with it on.
          >
          > Carol
          >
          >
          > _____
          >
          > From: familiesofangelmansyndrome@yahoogroups.com
          > [mailto:familiesofangelmansyndrome@yahoogroups.com]
          > On Behalf Of Susan Hawk
          > Sent: Tuesday, April 04, 2006 7:03 AM
          > To: familiesofangelmansyndrome@yahoogroups.com
          > Subject: Re: [Families of Angelman Syndrome] Hi. I
          > am new here.
          >
          >
          > Hi Carol, my hat is off to you, especially with 2
          > children with special needs. Our Isabella (my
          > boyfriend's little one) is 5 & 1/2 and we usually
          > have
          > her 3-4 days per week, sometimes 5 and we are
          > exhausted when she goes back to her Mom's house.
          > Really my hats off to all families who do this 24/7,
          > because my boyfriend and I do get a few days break
          > each week. Isabella is not yet formally diagnosed
          > with
          > AS but has all the symptoms. She can run but her
          > balance is poor, so she stumbles and falls a lot.
          > She
          > speaks very little, only 3 words and she doesn't
          > usually say them without coaxing. Mama, is about the
          > only one. She still sticks stuff in her mouth, loves
          > water and the toilet bowl! She has an odd gait kind
          > of stiff but not too bad. She also gets over-excited
          > easy, and then runs, screaming, laughing. When she
          > gets like that is when she pinches, pulls hair and
          > even tried to bite at times. She has been known to
          > push the teachers at her pre-school and pinch too,
          > especially if she isn't feeling well. She gets colds
          > and upper respiratory stuff a lot! I'm intersted in
          > the weighted vest you were talking about. What is
          > the
          > purpose of that and the pressure suit? Thanks, Sue
          >
          > --- cvkinnune <cvpickard@...> wrote:
          >
          > > Hi everyone. My family and I live in northwest
          > > Washington. I have
          > > a 5 year old son that just recently went through
          > the
          > > FISH test and we
          > > are waiting the results. Our neurologist and ped
          > > are pretty certain
          > > that he is an AS child. It has been a long
          > journey
          > > to get to this
          > > point. I brought the AS information to the ped
          > and
          > > neurologist at
          > > Mark's 5 year checkups and we are finally moving
          > > forward after
          > > spending almost 5 years spinning in circles trying
          > > to find answers.
          > >
          > > Mark was born low birth weight, had serious
          > feeding
          > > issues, and was
          > > until this year classified as failure to thrive.
          > He
          > > finally made it
          > > on the growth chart! He weighed in at 35 pounds
          > at
          > > his 5 year check
          > > up.
          > >
          > > Food is a huge adventure for him and he eats non
          > > stop. I can't
          > > believe how much he can put away in one day's
          > worth
          > > of eating.
          > > He walked at 14 months, never did crawl and had
          > > difficulty sitting up
          > > until he was about 11 months old. He got very
          > adept
          > > at rolling to
          > > get where he needed. He was diagnosed with
          > complex
          > > partial seizures
          > > and verbal apraxia at 15 months and was on
          > Tegretol.
          > > He is now
          > > taking Trileptal. He had a grueling 10 minute
          > > seizure in December so
          > > we switched meds. He is responding well to this
          > new
          > > med. His
          > > seizures seem to only occur in a specific REM
          > cycle
          > > or if he has a
          > > drastic temperature/climate change and sometimes
          > > right before a major
          > > developmental shift/occurence(which really
          > > fascinates me).
          > >
          > > We taught him sign and used picture boards to
          > > communicate, until
          > > about a year ago when he randomly started spurting
          > > out words. His
          > > speech pattern is about what an 18 month old's is,
          > > but it is exciting.
          > > It might not develop beyond what it is, but to
          > hear
          > > those words are
          > > amazing. We use music therapy and it seems to be
          > > helping.
          > >
          > > His behaviour is difficult to manage at best. He
          > is
          > > constantly
          > > going, exploring, and has no fear or sense of
          > > boundary. He loves to
          > > over stimulate. He has a lean forward approach to
          > > running and often
          > > tumbles headfirst in to things. We can't keep him
          > > out of water. He
          > > beelines for it whenever it is nearby - sinks,
          > > ponds, puddles,
          > > toilets, etc. He is also extremely fascinated
          > with
          > > lights and
          > > electricity. He has figured out every baby
          > proofing
          > > method we have
          > > attempted. He still puts everything he touches in
          > > his mouth. HE
          > > bites, hits and pulls hair, this has been quite a
          > > challenge to modify
          > > this behavior. He keeps us on our toes and we are
          > > quite exhausted by
          > > the end of the day.
          > > We are now getting much needed respite care every
          > > Saturday.
          > >
          > > He attends the early childhood preschool in our
          > > school district as
          > > well as head start. He loves school. He isn't
          > much
          > > of a sleeper,
          > > but I found that a pressure suit really helps and
          > > during the day he
          > > wears a weighted vest. I notice a huge difference
          > > in his ability to
          > > focus when he is wearing it.
          > >
          > > I also have a 15 year old with Asperger's, so life
          > > is quite an
          > > experience in our house.
          > >
          > > I had never heard of Angelman's until recently and
          > I
          > > am looking
          > > forward to connecting with other families that
          > have
          > > similar
          > > challenges.
          > >
          > > Carol
          > >
          > >
          > >
          > >
          >
          >
          > __________________________________________________
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          > Tired of spam? Yahoo! Mail has the best spam
          > protection around
          > http://mail.yahoo.com
          >
          >
          > _____
          >
          >
          === message truncated ===


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