I need to share something very funny... well in my sick humor it is funny to me..
I am not sure you all know but I have in home therapy (mental health) in the home for my teen to deal with teen issues, the program is called TBOSS and please do not ask me what they stand for but it is described: for children and adolescents and their family who display a high frequency of disruptive and impulsive behaviors and serious emotional disturbances. TBOSS provides individualized therapeutic approach where the disruptive behavior occurs, allowing access to a child’s natural behaviors, environments and caregivers, including the home, school, and day care. Treatment focuses on peer interactions and socially acceptable behavior.
The person coming has a master level degree... So it has been the best material any stand up comedian could hope to have... seriously!
I have to share a piece because most is privileged personal I can not share because you know who I am talking about but this was way way too funny I just have to share...
In discussing career choices, planning for transition the plan has been what schooling to stick with, add to or plan for and when. I gave my points and needed to just listen after that... As the therapist explained the difference from getting a job with a high school diploma verses a career where you would have a 401K for retirement... He stops to be sure she is understanding the conversation... He asks her if she knows what a 401K is.... She responds quickly; "Yes I do" He asks will you explain what you know it to be... she says; "it is when you have kids" He explains it would be good to have a career and a 401K if you are having children yes but how does a 401K work for your financial future? She stated she learned it from the BMA's, he said oh, how might that be? she says; "Chelsea Handler taught me about 401K's" really? "Justin Beebers mom got her 401K the day he was born." "Chelsea Handler said so!" I KID YOU NOT..... I did not bust out laughing....He didn't know what to say to this and she went on to explain... so oh my goodness my daughter is getting her financial planning off the BMA's.... kinda matches her comment tonight...
She says to me; Mom my teacher said to me today I should be thankful I have good looks.... wasn't that nice...
Oh dear, oh dear......this being the child that now has to take her medications before she gets to put on her eye liner because the one thing she never forgets before school is her eye liner...which now is encased in an envelope that says...TAKE YOUR PILL BEFORE YOU APPLY EYE LINER! LOL
Wednesday, October 6, 2010
Finding balance and holding on to balance......Life
Some days for me are one moment at a time and balance in my life is critical for all the little people who count on me every moment of their lives so I have had to take a few days to recover from some emotional dealings.
First and foremost if any of my followers are or know of a family who has a child with PWS and are interested or licensed to adopt I really would like you to email me. My world was just turned upside down from a situation needing a family for a newborn with PWS. So if I know families it is easy for me to pass along your information.
Let me back up to two years ago..... The week before Emma was born our family was submitted to adopt a little girl with Down syndrome at that time just 6 years old. A sad situation and she ended up in foster care... as the process moved on our end dropped the ball because Emma's situation was presented and moved very fast where I was in NICU out of town; living a new mom role with a very sick baby girl. I did not return emails or phone calls about the 6 yr old for months... I felt she must have been provided a home, she is so darn cute. I checked on her in the spring and learned she is still sitting in foster care.... still waiting for her family. I contacted the agency again and they called to request our current home study..which then makes us go through the process.... we have a new child so a new home study ($$$).. we are approved to adopt and space was being made for her to come. Tressa had made room in her bedroom to add a new sister her age as the little girl is almost 8 now. We have had the home visits, paper work jumping hoops and meeting all the new critera of Adam Walsh clearences, FBI fingerprints on top of FDLE level 2 clearences etc to meet ICPC regulations... no problem I have never been in trouble with the law and believe I am very capable of bringing her into our home as it feels God has kept his hand on me to care for her...in his time it will happen.
Last week as I was interviening in a situation in Florida helping a family in crisis I get an email to help a new family in need of placing their baby into an adotpive home who has PWS and they are hoping to find a family involved in PWS and know adoption and care of children with PWS... I sent out emails/phone calls to families who had talked to me about their desire to adopt in the past with children who have PWS.. I got back email after email of denials for right now is not a good time... I talked to the parents on the phone and I questioned if this isn't a clear message that it is our family he needs... I move to make arrangements to say; what is one more? I contact our social worker and attorney to be sure I am not blocking the placement of our little 8 yr old who needs us and they say if I am sure I can do it they trust in my judgement, check on what supports do you have in place... I talk to my teens in the home and of course my household says YES to a new baby... We get the Baby bed set up, place all the little boy materials out and we are set for me to fly out to meet the baby... but something didn't feel right... something kept me from clicking the payment button and having the flight confirmed.. I prayed and prayed what is happening... I emailed, I befriended face book friends that I have never personally met but are support in the world of PWS... and I prayed for an answer.. everything is moving quickly as it does with newborn adoptions for special needs.. I need a commitment. I talk to the family again and their questions of me brought the light staight to the surface.. the vision of long term goals for all were made clear.. this is not the plan, I need to back out and let this family move to find peace in what they are doing and if adoption is the answer, is this right>>> not for our family... and I went through a brief grieving of loosing an adoption placement, packing up the baby's spot in our home. The support from my friends is immensely appreciated, the strength it took for me not to take on so much more than my family really could handle...
The Extreme Makeover we had been nominated with for Home Makeover has not been decided so we are in a home which is in need of space for adding another boy to our family. In the long term plan for our family who would take over if anything happened to me, one child with PWS is a huge responsibility and 2 is twice as much.. Would that person or persons be able to move into my home as it is..no...this house is fine for me right now, that is not good long term planning. No one else would allow three children in their bed..LOL (all the kids have their own bed, mine seems to be the preferred) So it is calm today, it will be more calm when the baby is either in his birth family making his spot as their son and their believing they can parent him or in an adoptive family and all calm in their choices.. That will be a glorious day... but today we are where we need to be and yes I do understand I can not save the world and I have done more than most which all makes total sense on an average day..... days where I stay balanced.
The days after, this another clear message I did the right thing... when Tressa(PWS) came to our home Jordan was 18 months...last week I thought this is a parallel placement to that, seemed to be following EXACT play out. Then yesterday at Emma's 18 month check up I was told she needs weight on, she has fallen off the charts so pediasure and cookie parties.... OH GREAT!!! This was the same as with Jordan...for years I had to have Jordan hide under my sheets before bed and load him with calories.. I so remember how unfair it felt..when I mentioned another baby with PWS to my Pediatrician he says "NO" LOL I must admit when I mention adoption to any one of my friends or family 80% say no, but they have been saying "NO" since Kaitlyn?? Steven?? Jordan?? Tressa?? Lucas?? Emma?? and what if I had listened to those "NO's"
Today I need to get busy on what is current, a Down syndrome awareness walk/park date which is overwhelmingly difficult to pull together in this economy... Only three of the almost forty families coming registered ($$$) so how do you throw a HUGE event with $150.00.... it isn't enough to order printing for registration forms let alone getting the T-shirts...so I have a lot of responsibility on my shoulders right now which I have to find balance... the balance is I am holding to my word! I am not taking from my family any longer to make Down syndrome events work out the way I envision...they will be what they are for what is provided from the local community of DS... Awareness and togetherness ... it is what it is.
I am moving forward with the little girl and hopefully before Christmas she will be in her Hanna Montana sheets Tressa picked out for her. We are always thinking of her... and how having a family, our family, her family, is going to bring closure to her life in the system.
Today is my day of rest, tomorrow is a busy day... Friday is prepare for the weekend, Saturday we have a picnic to attend and a parade at night, Sunday Tressa and I prepare to go to Gainesville for her visit to PWS clinic with Dr Miller and the following weekend is Florida PWS Conference where we will be surrounded with friends in Orlando having FUN FUN FUN... so I can look forward to so much and celebrate all we have and not think about all that we don't.. We have the most important life asset, love..and one another. LUCAS will be SEVEN on the 13th... unbelievable!!! We have so much to celebrate.
First and foremost if any of my followers are or know of a family who has a child with PWS and are interested or licensed to adopt I really would like you to email me. My world was just turned upside down from a situation needing a family for a newborn with PWS. So if I know families it is easy for me to pass along your information.
Let me back up to two years ago..... The week before Emma was born our family was submitted to adopt a little girl with Down syndrome at that time just 6 years old. A sad situation and she ended up in foster care... as the process moved on our end dropped the ball because Emma's situation was presented and moved very fast where I was in NICU out of town; living a new mom role with a very sick baby girl. I did not return emails or phone calls about the 6 yr old for months... I felt she must have been provided a home, she is so darn cute. I checked on her in the spring and learned she is still sitting in foster care.... still waiting for her family. I contacted the agency again and they called to request our current home study..which then makes us go through the process.... we have a new child so a new home study ($$$).. we are approved to adopt and space was being made for her to come. Tressa had made room in her bedroom to add a new sister her age as the little girl is almost 8 now. We have had the home visits, paper work jumping hoops and meeting all the new critera of Adam Walsh clearences, FBI fingerprints on top of FDLE level 2 clearences etc to meet ICPC regulations... no problem I have never been in trouble with the law and believe I am very capable of bringing her into our home as it feels God has kept his hand on me to care for her...in his time it will happen.
Last week as I was interviening in a situation in Florida helping a family in crisis I get an email to help a new family in need of placing their baby into an adotpive home who has PWS and they are hoping to find a family involved in PWS and know adoption and care of children with PWS... I sent out emails/phone calls to families who had talked to me about their desire to adopt in the past with children who have PWS.. I got back email after email of denials for right now is not a good time... I talked to the parents on the phone and I questioned if this isn't a clear message that it is our family he needs... I move to make arrangements to say; what is one more? I contact our social worker and attorney to be sure I am not blocking the placement of our little 8 yr old who needs us and they say if I am sure I can do it they trust in my judgement, check on what supports do you have in place... I talk to my teens in the home and of course my household says YES to a new baby... We get the Baby bed set up, place all the little boy materials out and we are set for me to fly out to meet the baby... but something didn't feel right... something kept me from clicking the payment button and having the flight confirmed.. I prayed and prayed what is happening... I emailed, I befriended face book friends that I have never personally met but are support in the world of PWS... and I prayed for an answer.. everything is moving quickly as it does with newborn adoptions for special needs.. I need a commitment. I talk to the family again and their questions of me brought the light staight to the surface.. the vision of long term goals for all were made clear.. this is not the plan, I need to back out and let this family move to find peace in what they are doing and if adoption is the answer, is this right>>> not for our family... and I went through a brief grieving of loosing an adoption placement, packing up the baby's spot in our home. The support from my friends is immensely appreciated, the strength it took for me not to take on so much more than my family really could handle...
The Extreme Makeover we had been nominated with for Home Makeover has not been decided so we are in a home which is in need of space for adding another boy to our family. In the long term plan for our family who would take over if anything happened to me, one child with PWS is a huge responsibility and 2 is twice as much.. Would that person or persons be able to move into my home as it is..no...this house is fine for me right now, that is not good long term planning. No one else would allow three children in their bed..LOL (all the kids have their own bed, mine seems to be the preferred) So it is calm today, it will be more calm when the baby is either in his birth family making his spot as their son and their believing they can parent him or in an adoptive family and all calm in their choices.. That will be a glorious day... but today we are where we need to be and yes I do understand I can not save the world and I have done more than most which all makes total sense on an average day..... days where I stay balanced.
The days after, this another clear message I did the right thing... when Tressa(PWS) came to our home Jordan was 18 months...last week I thought this is a parallel placement to that, seemed to be following EXACT play out. Then yesterday at Emma's 18 month check up I was told she needs weight on, she has fallen off the charts so pediasure and cookie parties.... OH GREAT!!! This was the same as with Jordan...for years I had to have Jordan hide under my sheets before bed and load him with calories.. I so remember how unfair it felt..when I mentioned another baby with PWS to my Pediatrician he says "NO" LOL I must admit when I mention adoption to any one of my friends or family 80% say no, but they have been saying "NO" since Kaitlyn?? Steven?? Jordan?? Tressa?? Lucas?? Emma?? and what if I had listened to those "NO's"
Today I need to get busy on what is current, a Down syndrome awareness walk/park date which is overwhelmingly difficult to pull together in this economy... Only three of the almost forty families coming registered ($$$) so how do you throw a HUGE event with $150.00.... it isn't enough to order printing for registration forms let alone getting the T-shirts...so I have a lot of responsibility on my shoulders right now which I have to find balance... the balance is I am holding to my word! I am not taking from my family any longer to make Down syndrome events work out the way I envision...they will be what they are for what is provided from the local community of DS... Awareness and togetherness ... it is what it is.
I am moving forward with the little girl and hopefully before Christmas she will be in her Hanna Montana sheets Tressa picked out for her. We are always thinking of her... and how having a family, our family, her family, is going to bring closure to her life in the system.
Today is my day of rest, tomorrow is a busy day... Friday is prepare for the weekend, Saturday we have a picnic to attend and a parade at night, Sunday Tressa and I prepare to go to Gainesville for her visit to PWS clinic with Dr Miller and the following weekend is Florida PWS Conference where we will be surrounded with friends in Orlando having FUN FUN FUN... so I can look forward to so much and celebrate all we have and not think about all that we don't.. We have the most important life asset, love..and one another. LUCAS will be SEVEN on the 13th... unbelievable!!! We have so much to celebrate.
Friday, October 1, 2010
quick update
It has been a bit of time since I last posted about us as a family. We are all doing fine, no illnesses other than the allergy spells and return to school colds. Nothing taking much more than the regular measures. We have some of the annual medicals coming up although I am not feeling anything major will come of this years trips. Everyone eating well, exercising for the most part and therapy has been regular and consistent. Remember I put something on facebook pretty much daily. For a quick, hey what are you up to it can be found there... and if someone could PLEASE help my Mother learn facebook, she is getting upset the world knows more than she does.
If anyone is interested and obviously lives local I will be having one maybe two positions open for employment in my home after the first of the year. This is a position that comes in and helps with the kids daily and some weekends, we can be adjustable to yours and mine needs.. State pays 9 to 10 an hour starting depending on what you are doing.. email me.
Keirsten is turning 17 and some balance is surfacing, she want to start vo-tech as she finishes high school so that when she graduates she will have a cosmetology licence and work in a high end salon. She is all about hair and make up. Then she can move on to college for more if she wishes. Florida gave her a free pass to college from her special needs adoption as part of their subsidy package. Yeah!
Kaitlyn is moving through the eighth grade excited to be going to High School next year. She talks about all the things she is going to do in High School. She is very interested in the marching band. She starts bowling tomorrow with Steven in the neighborhood typical league. She is very excited about that.
Steven is Steven lackadaisical care free and as long as he has a finger skate board near by with a pad and markers the boy is not seen or heard. The weather broke so swimming 24/7 for people who live here is a bit cold.
Jordan is having some meds changes for seizures right now so all extra eyes on side effects from that. We went to the Doctor yesterday. He got a huge compliment from the staff at Children's Medical Services on how well he listens and obeys. I had a couple moments I wasn't sure but hey if that's what they see, I knkow I am pretty tough on the kids to be respectful in public because like it or not eyes on on their behaviors. HE passed! GO Jordan... not to leave out Steven and Kaitlyn who waited nicely in the waiting room without any incidence so thumbs up there as well.
Tressa is having a rough couple of days, not sure what's up but she is wanting to be difficult at school and refuse to work, she does it fine here??? Usually it is opposite, I struggle to get her to do home work... so we are woking on a reward to see if TODAY can be a thumbs up day. I know this being her repeat year the teacher is extra demanding as she well should be so she is 100% ready for the third grade. She is going to see Dr. miller on the 11th to get her medical on track and get answers on the new findings in pws research.
Lucas is making strides in this new environment at school.. This year the focus is not academic although he gets some it is on feeding and toilet which feeding is coming along nicely.. the connection for toilet I am not sure is all connected yet so a mute point if he isn't registering the connections to his brain.. we will see, just getting started.
Emma is doing fantastic as long as you let her do it on Emma time. If you seek for her to play a game she will put her arm behind her back, if you ask her to babbble she pinches her lips closed.. if you leave her alone she crawls to the toy area chatters in the mirror plays with her toys and manuviers all that she was being asked to do yet refused.. I know she is stubborn... but so darn cute. Her orthodic shoes and braces are in and she is wearing them about an hour a day or a little longer, They are only use for her to stand or walk so when she is crawling and playing solo she doesn't need them on.
Ali, well I believe we are on the down side of chewing but I could be wrong. I am not ready to run out and get new lawn cousions yet.. She is SO big, so so big. No more "little puppy" THe kids love her and she is so wonderful with them.
If anyone is interested and obviously lives local I will be having one maybe two positions open for employment in my home after the first of the year. This is a position that comes in and helps with the kids daily and some weekends, we can be adjustable to yours and mine needs.. State pays 9 to 10 an hour starting depending on what you are doing.. email me.
Keirsten is turning 17 and some balance is surfacing, she want to start vo-tech as she finishes high school so that when she graduates she will have a cosmetology licence and work in a high end salon. She is all about hair and make up. Then she can move on to college for more if she wishes. Florida gave her a free pass to college from her special needs adoption as part of their subsidy package. Yeah!
Kaitlyn is moving through the eighth grade excited to be going to High School next year. She talks about all the things she is going to do in High School. She is very interested in the marching band. She starts bowling tomorrow with Steven in the neighborhood typical league. She is very excited about that.
Steven is Steven lackadaisical care free and as long as he has a finger skate board near by with a pad and markers the boy is not seen or heard. The weather broke so swimming 24/7 for people who live here is a bit cold.
Jordan is having some meds changes for seizures right now so all extra eyes on side effects from that. We went to the Doctor yesterday. He got a huge compliment from the staff at Children's Medical Services on how well he listens and obeys. I had a couple moments I wasn't sure but hey if that's what they see, I knkow I am pretty tough on the kids to be respectful in public because like it or not eyes on on their behaviors. HE passed! GO Jordan... not to leave out Steven and Kaitlyn who waited nicely in the waiting room without any incidence so thumbs up there as well.
Tressa is having a rough couple of days, not sure what's up but she is wanting to be difficult at school and refuse to work, she does it fine here??? Usually it is opposite, I struggle to get her to do home work... so we are woking on a reward to see if TODAY can be a thumbs up day. I know this being her repeat year the teacher is extra demanding as she well should be so she is 100% ready for the third grade. She is going to see Dr. miller on the 11th to get her medical on track and get answers on the new findings in pws research.
Lucas is making strides in this new environment at school.. This year the focus is not academic although he gets some it is on feeding and toilet which feeding is coming along nicely.. the connection for toilet I am not sure is all connected yet so a mute point if he isn't registering the connections to his brain.. we will see, just getting started.
Emma is doing fantastic as long as you let her do it on Emma time. If you seek for her to play a game she will put her arm behind her back, if you ask her to babbble she pinches her lips closed.. if you leave her alone she crawls to the toy area chatters in the mirror plays with her toys and manuviers all that she was being asked to do yet refused.. I know she is stubborn... but so darn cute. Her orthodic shoes and braces are in and she is wearing them about an hour a day or a little longer, They are only use for her to stand or walk so when she is crawling and playing solo she doesn't need them on.
Ali, well I believe we are on the down side of chewing but I could be wrong. I am not ready to run out and get new lawn cousions yet.. She is SO big, so so big. No more "little puppy" THe kids love her and she is so wonderful with them.
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