It has been 20 days since I have posted. I can not say it is only because I have been busy altough I feel like I have been moving at a fast pace although taking time for me lately which feels good. for those who know me, I painted my toes this week..WOW is right. no I did not go somewhere I did them myself.
Keirsten is keeping me on my toe with the addition of dating in our lives. She is almost 17 and we are in the beginning stages of learning how to date responsibly. This my friends is exhausting. I feel like I am potty training all over again. Meaning the frustration of why did it happen again..we have gone over this simple rule... When our body tells us this it means that. The mind plays silly games with teenagers.. Keirsten seems to forget #1 that I was a teenager (and teen mom) and #2, I have raised teen girls oh, a few of them...
So it goes like this. She is not I did say NOT following house rules and is having a difficult time with honest vs story telling.. on things like the sky is blue. So then she and I meet in therapy and decide we would make a contract for rules.. She wants to have open reign..yes she is a teen. We go over why it is important for me to know what she is doing, where she is and what her plans are... Now..she took it here::::::::::: Mom if I come up with a plan and let you know what and where we will be can Bobby got to Orlando with us???????????????????? He boyfriend 15 years old in a hotel room with our family and her unsupervised all over Disney grounds when she can not keep the rules local in tact???????????? She said because I explained to the therapist that I do give her more space when we are out at conferences because she tends to reserve some of her shannagins when we are out away from local pals... WOW.... she is so teenslammed.
Kaitlyn is getting to the stage of challanging me as she seems to feel she is a parent in this house... Like if I redirect one of the little ones she might not agree 100% and will distract and so I then have to distract in turn her...LOL She is so easy... I wish all teens were as kaitlyn is. She is in clarinet lessons privately now preparing for her debue in Orlando July 18th in the talent contest. It was too cute to watch her audition at the local music house to decide which instrament to go with for a 2 minute talent display. We are very honored to have Kaitlyn in the event. Steven is same ole same ole..in the pool until his body is prune like. He is loving the fact it is almost summer and the school day will be full of play and pouring of sand or water. He is a riot, just refuses to grow up..Jordan continues to make pizza when ever possible. He is doing well in school. We do have an appointment to talk to a Neurosurgeon about his brain. Those of you unaware Jordan's brain is going into sleep patterns during totally awake moments which then turns him out to the community as if he knows nothing. Like you can ask him if her is a boy or girl or if a letter is a letter or a number and he simply doesn't know.. he brain asleep although he awake functioning as if nothing unusual..if you didn't know better. WIERD yes, not one Doctor has seen this before and so we are getting seen by a specialist now outside the area. When the brain is awake and he is awake all is normal Jordan. I am not sure if anything trips it or not although it appears when he is asked to concentrate it kicks in??? I can not say for sure although at school it occurs way more than when in free play or just doing routine home activities. tressa, she is doing so well 100% on her spelling test. She has always had the ability just not the desore and now we have both and it is shining in her school work..What three weeks before the end of school. Because of this we are holding her in 2nd grade again. Her reading jumped a complete leve so we are now going to do 2nd grade over so she has the foundation to move into 3rd grade and face multiplication and division after another year of simple addition and subtraction..and of course the reading will grow. SHe has natural phonimic awareness, can sound out any word. She is learning now how to learn words she sounds out. I am very excited for her. Lucas is up in the air still for fall. I had hoped we would know about the house so if it went and I could home school I would but we are still up in the air and the way we are now it just isn't set up for the flow of homeschool... this takes me to an IEP team who say only life skills. I may wait to see how the growth over summer goes to go in with the fight to try least restrictive. My bigger concern is splitting the kids into different school. The kids are in a full inclusive school and they are not wanting to take Lucas into Kindy.. Inclusive is very restrictive to how you get in here...Inclusive is a place here... Inclusive sometimes is not inclusive at all.... Scares me the mindset of some. Emma, well I see her as the bringing up the rear..She is doing so well. I can see in the near future her pulling Lucas to his fullest potential. I see her as a caring helpful sister with compassion. Lucas is making tons of progress at his pace. His pace has been wonderful not to give him any less credit he just has so many obsticles to over come. He is playing with toys appropriately a lot of the time. He is squeeking less and less. His therapy is kicking in and he is responding. Ali (the dog) today is not the right day to type about Miss Ali...she is all puppy the size of a bear!
Me, I am doing Ok, I went to a appreciation dinner the other night and found peace in the message which I needed to salidify what I am doing in life. All too often people seek to make judgement on what i have chosen for me..and this formal foster child now Phd got me, actually thanked me and understood me. He gave me so much insight on the question why do I do what I do for words I had not been able to place to emootion. He got me... and as soon as I can put back out into words from my mouth I want to speak of it. It is primal and explains much of the heart aches we face in todays society here in the USA. He opened my eyes..allowed me to see places I have not traveled yet understand culture.. Humanistic....not materialistic and in this coundtry being indiviualistic I am a square trying to fit in a round outlete.. He told me to keep my edge and do not allow anyone to change me.
Monday, May 31, 2010
Tuesday, May 11, 2010
Prader-willi syndrome on ABC Extreme Makeover Home Edition
The show on Sunday night on ABC Extreme Makeover: Home Edition featured a family with a son who has the same disability is my 8 year old, Tressa. The name of the disability is Prader-willi syndrome. Although the show gave great exposure and some wonderful information it is the tip of the iceberg to what a day in the life with a child who is in the thick of this disability is like. I am thrilled at the public response to learning more and the media for taking it on to educate our country... Some times I can feel so alone, so beat up from this it feels defeating at times although the on line support from other PWS families is AMAZING, it is only on line... and crying on the keyboard of a laptop isn't the same as another Mother who truly understands where you are. It isn't every day by any means but the days when the disability has it's peaks and you are not at the top of your game...it is overwhelming. I do what I can to avoid but no matter how much I do it is never enough. If you watched the show: when the mom stated her fear of him eating that amount that would blow his stomach open and he would die...Yes, that fear is often. I have laid next to her after an eating episode where I prayed and prayed because there is nothing more you can do... She ate whole large fruit frozen pie and I had no idea if she would live through it.. I wasn't seeing signs of fever or distress and she can not vomit (it would kill her) so I laid and prayed. So when that mom shared that thought I knew right what she was feeling/saying.
Monday, May 10, 2010
Sunday, May 9, 2010
HAPPY MOTHER'S DAY to all my given MOTHER'S
I first wish to THANK the women who chose me to Mother their child. Each and everyone of you hold a special place in my heart. THANK YOU!
This year we chose to take advantage of a great deal in a local (Naples) hotel. It was an amazing gift for such a low price... You know when you think you are getting a deal off line you often hold your breath as checking in.. Pleasantly surprised we had amply if not more room there than home..LOL I know the TV room was much bigger... we spent the majority of time in the pool (our favorite family activity) then the workout center was PERFECT, something for most all who can to do weight machines, cycles, treadmills etc.. A TV for those who couldn't and a bathroom connected.. healthy fun... and breakfast on the hotel...YES! the whole experience was just family centered.
Let me back up... Friday the kids had dentist appointments; most of them (all but Kaitlyn and Tressa) It went as expected. Keirsten got a good check, then they call Jordan... anxiety rose through the roof as he bolted out the front of their office.. I get him back in but there was no cleaning going on that day.. I need to have him solo and use every manipulative skill in my body and bribe to the heavens to get his teeth cleaned..parenting skills 1000 He told the Dentist he wanted a trip to Disney world..LOL yes I do realize I brought this on myself but if we time it right we can fulfill that wish in July.. Di I change the May 19th cleaning to July?? let's see how the 19th goes. Should I save his nighttime meds to morning????? HHHHHhhhmmm... well Steven's teeth are more than perfect (the one with perfect eyes as well) Lucas screamed and bolted but being 6 we were able to capture & secure to check his teeth, just keep cleaning at home so he is not traumatized, we are holding off the drill style cleanings. So it is Jordan.. the one with the weakest teeth that didn't even sit in the chair..
Saturday we got up early ate and headed to the ball field. The kids played ball with the Miracle Base Ball players, well here again, anxiety rose and Jordan bolted.. out to the parking lot and he wanted to go to a restaurant for a drink of soda. The boy thinks of the strangest requests in times of stress. Any way he went to the van with Mandie, Lucas and Emma for a movie and some juice. At the time the event was near ending he wanted to join in and was having a grand time.. go figure. He is not good at sportsmanship. He believes he is Michael JORDAN, You know he is a pro right off the bat...lol a play on words. When he misses a ball he looses it and walks off to the point her can not pull himself together.. He is all personality too like he is hot Sh-- like goofing off at the plate, making the pros laugh then taunting them with his finger as if to be saying come on come and get it... and then pretends to stretch with the bat in his arms as they are ready to pitch the ball to him.. Only a video camera could capture the true humor in it all but me...I know he is moments away from loosing his emotions because with all his goofy actions he is not going to make contact with the ball. And that is what happens.... he tears off his shoes and goes to the bleachers... IGNORE... PLEASE IGNORE...... but not at events where the people who put it on want everyone to have a good time.... he is covered in attention. YIKES for next year.
We finish at about 12:30 and head to Naples for the Down syndrome meeting. I am putting on a meeting hosted by a Naples mom focused on birth to 3 parenting a child with Down syndrome. It is beautiful. New mommies nursing their baby's and everyone sharing stories, phone numbers shared= building friendships in their ever busy lives. I have a volunteer to take over the Naples area hospitals for our newborn packet hand outs. EXCITING. The kids are restless after hyped from the game, getting a signed ball and certificate of achievement then a celebration lunch and now sitting waiting for moms meeting to be over .. they needed to release at a pool... it is so very hot outside only in water could anyone stand themselves outside.
We finished the night off at the hotel pool. Nancy made a couple mixed drinks and the kids chowed down on the left over catered food from the party. We stayed in the pool way past bedtime and now we needed to bed the kids and have some Nancy and Mary time... catch up on all the IDEA, DOE and SPandP stuff, compare notes on supports and services... you know what fed laws have changed and where we stand to vote on issues coming up... isn't that what every parent talks about in their girls night out time??? We know we are advocacy addicts. The silver lining is we have admitted it so we have taken the first step to recovery..LOL Nancy is being heart torn to an adoption situation she has learned about and the little girl was at the meeting.. I would so love for this little girl to remain in our lives in some way so I am encouraging her to pray about it and act quickly if this is her path. I know long term our home is not the right place for this little girl but I sure love her... my heart aches thinking I may never see her again.
Sunday morning I woke to little people saying HAPPY MOTHERS DAY MOM....and then they took me to breakfast (free at hotel) very nice... it turns out fine only one mishap of Lucas bolting when my back is turned.He got up but didn't leave the room a few times until we had a face to face, eye to eye and he sat but once the opportunity arose... well then it was a hall search and family involvement.. then a trip to the bathroom and he was holding my hand from that point on. WE went to the pool after breakfast to realize we had been noticed during breakfast...the adults where now in the pool and very eager to hear the story of how this woman has so many children with special needs....and they listened until it was time to get their flight. Very comforting when people really care genuinely care about our story and give thanks and encouragement..not that I need it but today it felt revitalizing... THANK YOU LADIES and gentleman of Jersey. so it is time to hop off and watch EXTREME MAKEOVER HOME EDITION as a family with a child who has Prader-willi syndrome is on tonight and we have come to know them through this journey (Tressa my 8 year old has PWS)
This year we chose to take advantage of a great deal in a local (Naples) hotel. It was an amazing gift for such a low price... You know when you think you are getting a deal off line you often hold your breath as checking in.. Pleasantly surprised we had amply if not more room there than home..LOL I know the TV room was much bigger... we spent the majority of time in the pool (our favorite family activity) then the workout center was PERFECT, something for most all who can to do weight machines, cycles, treadmills etc.. A TV for those who couldn't and a bathroom connected.. healthy fun... and breakfast on the hotel...YES! the whole experience was just family centered.
Let me back up... Friday the kids had dentist appointments; most of them (all but Kaitlyn and Tressa) It went as expected. Keirsten got a good check, then they call Jordan... anxiety rose through the roof as he bolted out the front of their office.. I get him back in but there was no cleaning going on that day.. I need to have him solo and use every manipulative skill in my body and bribe to the heavens to get his teeth cleaned..parenting skills 1000 He told the Dentist he wanted a trip to Disney world..LOL yes I do realize I brought this on myself but if we time it right we can fulfill that wish in July.. Di I change the May 19th cleaning to July?? let's see how the 19th goes. Should I save his nighttime meds to morning????? HHHHHhhhmmm... well Steven's teeth are more than perfect (the one with perfect eyes as well) Lucas screamed and bolted but being 6 we were able to capture & secure to check his teeth, just keep cleaning at home so he is not traumatized, we are holding off the drill style cleanings. So it is Jordan.. the one with the weakest teeth that didn't even sit in the chair..
Saturday we got up early ate and headed to the ball field. The kids played ball with the Miracle Base Ball players, well here again, anxiety rose and Jordan bolted.. out to the parking lot and he wanted to go to a restaurant for a drink of soda. The boy thinks of the strangest requests in times of stress. Any way he went to the van with Mandie, Lucas and Emma for a movie and some juice. At the time the event was near ending he wanted to join in and was having a grand time.. go figure. He is not good at sportsmanship. He believes he is Michael JORDAN, You know he is a pro right off the bat...lol a play on words. When he misses a ball he looses it and walks off to the point her can not pull himself together.. He is all personality too like he is hot Sh-- like goofing off at the plate, making the pros laugh then taunting them with his finger as if to be saying come on come and get it... and then pretends to stretch with the bat in his arms as they are ready to pitch the ball to him.. Only a video camera could capture the true humor in it all but me...I know he is moments away from loosing his emotions because with all his goofy actions he is not going to make contact with the ball. And that is what happens.... he tears off his shoes and goes to the bleachers... IGNORE... PLEASE IGNORE...... but not at events where the people who put it on want everyone to have a good time.... he is covered in attention. YIKES for next year.
We finish at about 12:30 and head to Naples for the Down syndrome meeting. I am putting on a meeting hosted by a Naples mom focused on birth to 3 parenting a child with Down syndrome. It is beautiful. New mommies nursing their baby's and everyone sharing stories, phone numbers shared= building friendships in their ever busy lives. I have a volunteer to take over the Naples area hospitals for our newborn packet hand outs. EXCITING. The kids are restless after hyped from the game, getting a signed ball and certificate of achievement then a celebration lunch and now sitting waiting for moms meeting to be over .. they needed to release at a pool... it is so very hot outside only in water could anyone stand themselves outside.
We finished the night off at the hotel pool. Nancy made a couple mixed drinks and the kids chowed down on the left over catered food from the party. We stayed in the pool way past bedtime and now we needed to bed the kids and have some Nancy and Mary time... catch up on all the IDEA, DOE and SPandP stuff, compare notes on supports and services... you know what fed laws have changed and where we stand to vote on issues coming up... isn't that what every parent talks about in their girls night out time??? We know we are advocacy addicts. The silver lining is we have admitted it so we have taken the first step to recovery..LOL Nancy is being heart torn to an adoption situation she has learned about and the little girl was at the meeting.. I would so love for this little girl to remain in our lives in some way so I am encouraging her to pray about it and act quickly if this is her path. I know long term our home is not the right place for this little girl but I sure love her... my heart aches thinking I may never see her again.
Sunday morning I woke to little people saying HAPPY MOTHERS DAY MOM....and then they took me to breakfast (free at hotel) very nice... it turns out fine only one mishap of Lucas bolting when my back is turned.He got up but didn't leave the room a few times until we had a face to face, eye to eye and he sat but once the opportunity arose... well then it was a hall search and family involvement.. then a trip to the bathroom and he was holding my hand from that point on. WE went to the pool after breakfast to realize we had been noticed during breakfast...the adults where now in the pool and very eager to hear the story of how this woman has so many children with special needs....and they listened until it was time to get their flight. Very comforting when people really care genuinely care about our story and give thanks and encouragement..not that I need it but today it felt revitalizing... THANK YOU LADIES and gentleman of Jersey. so it is time to hop off and watch EXTREME MAKEOVER HOME EDITION as a family with a child who has Prader-willi syndrome is on tonight and we have come to know them through this journey (Tressa my 8 year old has PWS)
Thursday, May 6, 2010
Wednesday, May 5, 2010
SO much to say, so little time to get on to tell you...
We are all doing OK. Emma has struggled through a very difficult virus and is now on day 6 showing signs of getting better. She is now on inhalants for her allergies.
Lucas is on Lo Jack..LOL he is wearing the life saving band that will locate him is lost. He is doing well with it on.
Tressa is on a field trip and in her mind planning something special for her teacher who has a birthday tomorrow. Due to the teacher being on a diet no cake...so this has made Tressa think outside her box..lol
Jordan is Jordan...you all have got to understand... we did the EEG and in the results it shows that in his waking moments his brain is in sleep patterns... The Neurologist is out this week so no explanation on what next because not one Doctor I have talked to has ever heard of this before... GO JORDAN! LOL leave it to him.
Steven is doing well, he has a side the teen age years has brought on and it is so cute. He is getting his hair trimmed up today and looking forward to their school dance on the 19th. Mandie will be going with him and Kaitlyn so they are practicing appropriate dance moves.
Kaitlyn well she is a blast. She went to school yesterday wearing a short which brought much drama to the point out Superintendent was pulled in by me... She was going to be in ISS internal suspension for a day because it was too short.. It was far from too short. Middle school drama, can't wait for High School.
Keirsten is struggling still and yesterday was accepted in the VISTA program to get help.. I am very pleased as she showed maturity in admitting her thoughts and facing the future.
Lucas is on Lo Jack..LOL he is wearing the life saving band that will locate him is lost. He is doing well with it on.
Tressa is on a field trip and in her mind planning something special for her teacher who has a birthday tomorrow. Due to the teacher being on a diet no cake...so this has made Tressa think outside her box..lol
Jordan is Jordan...you all have got to understand... we did the EEG and in the results it shows that in his waking moments his brain is in sleep patterns... The Neurologist is out this week so no explanation on what next because not one Doctor I have talked to has ever heard of this before... GO JORDAN! LOL leave it to him.
Steven is doing well, he has a side the teen age years has brought on and it is so cute. He is getting his hair trimmed up today and looking forward to their school dance on the 19th. Mandie will be going with him and Kaitlyn so they are practicing appropriate dance moves.
Kaitlyn well she is a blast. She went to school yesterday wearing a short which brought much drama to the point out Superintendent was pulled in by me... She was going to be in ISS internal suspension for a day because it was too short.. It was far from too short. Middle school drama, can't wait for High School.
Keirsten is struggling still and yesterday was accepted in the VISTA program to get help.. I am very pleased as she showed maturity in admitting her thoughts and facing the future.
Subscribe to:
Posts (Atom)