Decorate ornaments
Go caroling
Make homemade holiday cards
Create scrapbook pages that you can add all the great photos you take at the holidays
Host a Turkey Trot (Thanksgiving)
Walk the neighborhood looking at Christmas lights.
drive around town and "judge" decorated houses and compare scores
stretch out gift opening,
take gifts to neighbours
sing carols to elderly homes
play games and do puzzles together
make a special family album (music album that is)and have a Christmas dance
check out all the local tree lightings
see the nutcracker or rent it and invite people over
Create a traveling dinner so time stretches the day out(we all have to eat) make each special and who can do the best tasting low calorie item
Light a fire outside make up Winter wonderland stories.
be a secret santa for a child at a shelter...
Tuesday, December 8, 2009
Monday, December 7, 2009
Tressa keeps me on my toes, my mind keen and all the mental use I have left in tact... LOL You must must must be able to have humor as part of your day. This happened tonight in less than 2 seconds as I took a cap off one pill bottle and opened another during routine night medication...today we had in home support who put all the food in the locked kitchen just a different location and the split seconds is all it takes for a person with PWS to seize the opportunity... AMAZING
Monday, October 26, 2009
EXTREME HOME MAKEOVER coming to S. Florida
RE: EXTREME HOME MAKEOVER coming to S. Florida
Dear PWS families,
We are asking if you would email our family as your choice for a South Florida family to have a new home built through the ABC show Extreme Home Makeover. We are a family being considered and need you to email your vote for us so we can win this gift....they are looking for community involvement now. Send in your desire to offer as a VOLUNTEER(S) to make this project happen for our family, if you wish. Just emailing the show to tell how you know us and PWS helps!
IT IS ABOUT AWARENESS.....WE NEED YOUR HELP!!!
please forward for more emails go to the show for our family
Learn about our family:
www.pringleadoptionjourney.blogspot.com
Email a short explanation why you would nominate our family.
Lindsay Spaulding, her email is:
castingsouthflorida@gmail.com
Facts you can use in the email to Lindsay Spaulding
Mary 49yr old single Mom to 12 children; sits on the board of Family Care Council for Florida (disabilities), ESE Advisory for Lee County Schools, PTO at the school, Brownie Girl Scout leader, Down syndrome parent organization leader, assists in NICU for new parents with baby's having DS, cares for newborns' waiting for adoptive families until a family comes, provides respite to families with children who have disabilities.
7 Children in the home:
Keirsten 15yrs SEVERE ADHD, possible Bi polar.
Kaitlyn 15yrs Down syndrome, 1 ear deaf the other 70% hearing loss, eye degeneration.
Steven 12yrs Down syndrome, autism spectrum
Jordan 9yrs Down syndrome, Dandy Walker spectrum, Opsoclonus, ADHD
Tressa 7yrs Prader-willi syndrome, Diabetes
Lucas 6yrs old Down syndrome, Autism
Emma 6 months old Down syndrome recovering from Heart surgery VSD, PFO and PSD, Pyloric stynosis
Mary Beth Pringle
Cape Coral, Florida
(239) 872-4778
Pringleclan@msn.com
www.pringleadoptionjourney.blogspot.com
Home built in 1980, Mary purchased 1991.
Lot: Frontage is 80 FT depth is 125 FT
Dear PWS families,
We are asking if you would email our family as your choice for a South Florida family to have a new home built through the ABC show Extreme Home Makeover. We are a family being considered and need you to email your vote for us so we can win this gift....they are looking for community involvement now. Send in your desire to offer as a VOLUNTEER(S) to make this project happen for our family, if you wish. Just emailing the show to tell how you know us and PWS helps!
IT IS ABOUT AWARENESS.....WE NEED YOUR HELP!!!
please forward for more emails go to the show for our family
Learn about our family:
www.pringleadoptionjourney.blogspot.com
Email a short explanation why you would nominate our family.
Lindsay Spaulding, her email is:
castingsouthflorida@gmail.com
Facts you can use in the email to Lindsay Spaulding
Mary 49yr old single Mom to 12 children; sits on the board of Family Care Council for Florida (disabilities), ESE Advisory for Lee County Schools, PTO at the school, Brownie Girl Scout leader, Down syndrome parent organization leader, assists in NICU for new parents with baby's having DS, cares for newborns' waiting for adoptive families until a family comes, provides respite to families with children who have disabilities.
7 Children in the home:
Keirsten 15yrs SEVERE ADHD, possible Bi polar.
Kaitlyn 15yrs Down syndrome, 1 ear deaf the other 70% hearing loss, eye degeneration.
Steven 12yrs Down syndrome, autism spectrum
Jordan 9yrs Down syndrome, Dandy Walker spectrum, Opsoclonus, ADHD
Tressa 7yrs Prader-willi syndrome, Diabetes
Lucas 6yrs old Down syndrome, Autism
Emma 6 months old Down syndrome recovering from Heart surgery VSD, PFO and PSD, Pyloric stynosis
Mary Beth Pringle
Cape Coral, Florida
(239) 872-4778
Pringleclan@msn.com
www.pringleadoptionjourney.blogspot.com
Home built in 1980, Mary purchased 1991.
Lot: Frontage is 80 FT depth is 125 FT
Friday, October 23, 2009
Meds or behavioral modifications or both and then???
Anyone! My son is 6 yrs and has PWS and has entered the public school this year. We had him at an ABA school last year (applied behavior anlaysis for behavior management) and it was awesome, but expensive and too many changes were made for this school year, so we decided to try public Kindergarten. My son has 10 kids and 4 adults in the classroom (1 certified teacher). He is the "handful" of them all! Sweet, kind, and a doll when he wants to be, but an attention seeker when he's having the "rough" day....throwing fits, pushing chairs, etc. After trying behavior strategies, etc. we are wondering about medications for him. For whatever reason some kids with PWS have behavior problems, I need to seek all avenues. First of all, what type of doctor is best to prescribe behavior meds? Is it the endo that refers or a psychologist (referrring the med) or a psychiatrist prescribing? What is the best avenue? Do you see the endo, because they
are supposed to be the knowledgable one about PWS, and ask for help and let them work (consult together) with a recommended therapist??? Is the pediatrician involved in decisions? This sounds so ridiculous, but I'm baffled.
BTW, all the behaviors you listed, Tressa has done. Throws over her desk, wipes out the book shelf, tears down the bulletin board...anything in reach when she looses it.... anything that gets a reaction...we turned it around with the behavior plan. ALSO so important that the negative behaviors do not ever get any attention. She has taken all her clothes off in the classroom when nothing else worked.. she felt pretty stupid in the end when that didn't work. The class all got up, left for the playground and she was left to get dressed and back in her seat....peer pressure has prevented that from re-occurring. Out on the playground the students were told that when they returned they got in thir seat, did not look at her and returned to instruction eyes on teacher, ears on teacher and hands in laps..they all did as told..Tressa got no attention. Some of this will be natural especially if it is not food related.
The FBA is all inclusive. reports, face to face in all areas of his school and/or home life. Mine did many times at the school in different settings. Different days, different times. She came to our home and went one time with us out to the park. I set up scenes where we would be in an environment normal to his routine. THe IMPORTANT piece always is what happened before a undesired behavior happen and how do we change that from occurring. Thus we eliminate negative behaviors.
It has some time frames from when you sign the form to have one done and all up to the schedule your district specialist has but squeaky wheels get greased. If it is too unacceptable then require them to pay an outside person and the school dist will foot the bill.... they will find time.
My kids were not potty trained in Kindy nor up to 3rd for Kaitlyn. That needs on the IEP THAT DRIVES A 1:1 aide.....PERFECT! The toileting schedule needs to be on the IEP and toileting needs to be a goal. Visual charts and rewards for positive ...stickers for going on schedule and a bigger sticker for poops in the potty..A visual chart showing potty routine.
Also on the IEP place that he receives positive praise every 2 to 3 minutes -- they have to watch to be sure they are praising for positive behavior and he will thrive on this .... again it will require a 1:1 to meet this goal..NEVER EVER SAY 1:1 aide requested...Get into the IEP and say this are the things I want, potty goals on the IEP, visual schedule, positive praise, rewards as achieves potty schedule, supervision at all times on campus for health and safety, redirection during unexpected food encounters, be sure that no food is given unless provided or approved by the parent is on his IEP. NEVER is discipline if obtains food on campus, parent is called no negative talk. (Remember it is not him it is his disability) I have on the IEP that all staff in contact with Tressa on campus needs to watch the Prader-willi school DVD. I met with the cafeteria and they have on their computer next to her lunchroom number NO LUNCH FOOD PROVIDED, 1 box of cereal and Fat free milk breakfast only.
Now I am not saying nothing has happened... one time she had a melt down because play practice was in the cafeteria and it was lunch prep time...She heard the pots and pans, smelled the food and could not maintain her role in the play...they took her to the office to visit...she stuck a in of chocolates in her pants or under her shirt and got them to her book bag and I found them gone that night in her room...all she said is "they were really good chocolates mom" Godiva...lol
I will keep thinking of other things I have done which loads the IEP with the fact they will need a person 1:1 to meet the goals and if they do not then you call them on the fact they are not abiding by the IEP which is breaking the law.. LEAST restrictive environment must be first line....has he been included with all the supports and services and it failed? If not the law says he is entitled to be educated next to his peers.
Also, please name a med that works for your child and perhaps one that doesn't that you've tried. I would like to compare the results of everyone's input and have some knowledge walking in to see a dr. or therapist or psychologist, etc. blah, blah blah....please let me know the meds that is horrible with weight gain.
Also, the teacher already gives me the impression that my son is a handful, but she loves him and wants to help him. I think she needs more help in her room. If there are any parents that fought for a 1:1 assistant for their child and got it, please let me know how you did it. My son doesn't have any eating issues/seeking issues as of yet. Nothing is medically necessary, just behaviorally
Unfortunately the medication they find helpful is one that I tried to get for Tressa a while ago which medicaid will not even consider – Provigil. It works fantastically. I can try other ADHD meds which Medicaid will approve, like Focalin or Concerta, but have not gone that route yet. They don’t work as well in kids with PWS as the Provigil does so I am trying to get provigil though advocating.
are supposed to be the knowledgable one about PWS, and ask for help and let them work (consult together) with a recommended therapist??? Is the pediatrician involved in decisions? This sounds so ridiculous, but I'm baffled.
BTW, all the behaviors you listed, Tressa has done. Throws over her desk, wipes out the book shelf, tears down the bulletin board...anything in reach when she looses it.... anything that gets a reaction...we turned it around with the behavior plan. ALSO so important that the negative behaviors do not ever get any attention. She has taken all her clothes off in the classroom when nothing else worked.. she felt pretty stupid in the end when that didn't work. The class all got up, left for the playground and she was left to get dressed and back in her seat....peer pressure has prevented that from re-occurring. Out on the playground the students were told that when they returned they got in thir seat, did not look at her and returned to instruction eyes on teacher, ears on teacher and hands in laps..they all did as told..Tressa got no attention. Some of this will be natural especially if it is not food related.
The FBA is all inclusive. reports, face to face in all areas of his school and/or home life. Mine did many times at the school in different settings. Different days, different times. She came to our home and went one time with us out to the park. I set up scenes where we would be in an environment normal to his routine. THe IMPORTANT piece always is what happened before a undesired behavior happen and how do we change that from occurring. Thus we eliminate negative behaviors.
It has some time frames from when you sign the form to have one done and all up to the schedule your district specialist has but squeaky wheels get greased. If it is too unacceptable then require them to pay an outside person and the school dist will foot the bill.... they will find time.
My kids were not potty trained in Kindy nor up to 3rd for Kaitlyn. That needs on the IEP THAT DRIVES A 1:1 aide.....PERFECT! The toileting schedule needs to be on the IEP and toileting needs to be a goal. Visual charts and rewards for positive ...stickers for going on schedule and a bigger sticker for poops in the potty..A visual chart showing potty routine.
Also on the IEP place that he receives positive praise every 2 to 3 minutes -- they have to watch to be sure they are praising for positive behavior and he will thrive on this .... again it will require a 1:1 to meet this goal..NEVER EVER SAY 1:1 aide requested...Get into the IEP and say this are the things I want, potty goals on the IEP, visual schedule, positive praise, rewards as achieves potty schedule, supervision at all times on campus for health and safety, redirection during unexpected food encounters, be sure that no food is given unless provided or approved by the parent is on his IEP. NEVER is discipline if obtains food on campus, parent is called no negative talk. (Remember it is not him it is his disability) I have on the IEP that all staff in contact with Tressa on campus needs to watch the Prader-willi school DVD. I met with the cafeteria and they have on their computer next to her lunchroom number NO LUNCH FOOD PROVIDED, 1 box of cereal and Fat free milk breakfast only.
Now I am not saying nothing has happened... one time she had a melt down because play practice was in the cafeteria and it was lunch prep time...She heard the pots and pans, smelled the food and could not maintain her role in the play...they took her to the office to visit...she stuck a in of chocolates in her pants or under her shirt and got them to her book bag and I found them gone that night in her room...all she said is "they were really good chocolates mom" Godiva...lol
I will keep thinking of other things I have done which loads the IEP with the fact they will need a person 1:1 to meet the goals and if they do not then you call them on the fact they are not abiding by the IEP which is breaking the law.. LEAST restrictive environment must be first line....has he been included with all the supports and services and it failed? If not the law says he is entitled to be educated next to his peers.
Also, please name a med that works for your child and perhaps one that doesn't that you've tried. I would like to compare the results of everyone's input and have some knowledge walking in to see a dr. or therapist or psychologist, etc. blah, blah blah....please let me know the meds that is horrible with weight gain.
Also, the teacher already gives me the impression that my son is a handful, but she loves him and wants to help him. I think she needs more help in her room. If there are any parents that fought for a 1:1 assistant for their child and got it, please let me know how you did it. My son doesn't have any eating issues/seeking issues as of yet. Nothing is medically necessary, just behaviorally
Unfortunately the medication they find helpful is one that I tried to get for Tressa a while ago which medicaid will not even consider – Provigil. It works fantastically. I can try other ADHD meds which Medicaid will approve, like Focalin or Concerta, but have not gone that route yet. They don’t work as well in kids with PWS as the Provigil does so I am trying to get provigil though advocating.
Thursday, October 22, 2009
Behaviors...get a leg up
My first advice is that an FBA be completed by a board certified behavior analyst, doesn't matter really if it's BCABA or BCBA. The reason for the specifics of the request is due to the complexities of his/her (your PWS child's) concerns. The assessment appears to warrant the expertise of a credentialed professional. You need to ask for the section that states who will perform the assessment to be changed from district behavior specialist to district behavior analyst.
See where you get with that request-
One of two things will happen....there may be a statement something like there is not district behavior analyst and that would open up a can of whoop a _ _ bigger than even I could imagine. The other response be that there is no school based need for that as her behaviors in school are not that severe.
You might consider giving permission for the district to conduct an FBA and then pending the results, decide if you want to request an independent FBA if you don’t think the outcomes are adequate.
See where you get with that request-
One of two things will happen....there may be a statement something like there is not district behavior analyst and that would open up a can of whoop a _ _ bigger than even I could imagine. The other response be that there is no school based need for that as her behaviors in school are not that severe.
You might consider giving permission for the district to conduct an FBA and then pending the results, decide if you want to request an independent FBA if you don’t think the outcomes are adequate.
Dear SW Florida VOLUNTEERS,
We are asking you to email our family as your choice for a South Florida family to have a new home built through the ABC show Extreme Home Makeover. We are a family being considered and need you to email your vote for us so we can win this gift.... community involvement is a huge piece of the show. Send in your desire to offer VOLUNTEERS to make this project happen for our family.
IT IS ABOUT AWARENESS.....WE NEED YOUR VOTE!!!
Email a short explanation why you would love to see our family get this, and how you can get volunteers to the project. Letting them know you would like to see us on the show is help enough.
Lindsay Spaulding, her email is:
castingsouthflorida@gmail.com
check out our main family blog for updated information.
www.pringleadoptionjourney.blogspot.com
We are asking you to email our family as your choice for a South Florida family to have a new home built through the ABC show Extreme Home Makeover. We are a family being considered and need you to email your vote for us so we can win this gift.... community involvement is a huge piece of the show. Send in your desire to offer VOLUNTEERS to make this project happen for our family.
IT IS ABOUT AWARENESS.....WE NEED YOUR VOTE!!!
Email a short explanation why you would love to see our family get this, and how you can get volunteers to the project. Letting them know you would like to see us on the show is help enough.
Lindsay Spaulding, her email is:
castingsouthflorida@gmail.com
check out our main family blog for updated information.
www.pringleadoptionjourney.blogspot.com
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