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CARETAKER'S OF OUR LOVED ONES

A Guide to Posting in Your SparkTeam Forum

  FORUM:   SUPPORT IDEAS AND THEMES
TOPIC:   SPECIAL NEEDS CHILDREN! 


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DEE107
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7/24/13 12:36 A

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thats the truth they are so sweet

DEE Southern New Jersey
CARETAKER'S OF OUR LOVE ONE'S
SP Class of Oct 12-18 2008.
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Faith makes all thing possible
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God is Good all the time. All the time GOD is good.

Let your life be like Angel Food Cake...sweet and Light---




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MAYBER
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7/24/13 12:06 A

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CRAZYGAGRANNY sending prayers for Phillip
One of the caregivers have for my DH has an 8 year old son with Aspergers and he is so very sweet and loveable he loves to come here to play
One day at a time


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DEE107
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5/17/13 11:21 P

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that sounds like a good idea

DEE Southern New Jersey
CARETAKER'S OF OUR LOVE ONE'S
SP Class of Oct 12-18 2008.
Losing Weight & Disabled
Menopause & Losing
Secrets of Life
Grandpas & Grandmas Are Special
40s & up...Sculpting a new U

Faith makes all thing possible
Love makes all things happen
Hope makes all things work

God is Good all the time. All the time GOD is good.

Let your life be like Angel Food Cake...sweet and Light---




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GRAMMACATHY
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5/16/13 1:26 P

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Prayers for Philip. Does he have a calendar, so he can anticipate the change in his routine?

My first thought was food culprits too. I feel much better not eating processed food and drinking plenty of water.



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DEE107
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5/15/13 11:53 P

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how is his eatting and drinking

DEE Southern New Jersey
CARETAKER'S OF OUR LOVE ONE'S
SP Class of Oct 12-18 2008.
Losing Weight & Disabled
Menopause & Losing
Secrets of Life
Grandpas & Grandmas Are Special
40s & up...Sculpting a new U

Faith makes all thing possible
Love makes all things happen
Hope makes all things work

God is Good all the time. All the time GOD is good.

Let your life be like Angel Food Cake...sweet and Light---




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CRAZYGAGRANNY
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5/15/13 8:03 P

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I took Phillip to the doctor today. They have ordered blood work for him. This is a major ordeal for Phillip. He told me to set it up for next Thursday. Children with Aspergers have to be on their routine. You do not just throw new things at them.

The reason for the blood test, Phillip has been having headaches and has no energy. He also has several aches and pains that really concern me.

Please just keep Phillip in your prayers.



DEE107
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11/26/12 11:55 P

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my mother and father is diabetes

DEE Southern New Jersey
CARETAKER'S OF OUR LOVE ONE'S
SP Class of Oct 12-18 2008.
Losing Weight & Disabled
Menopause & Losing
Secrets of Life
Grandpas & Grandmas Are Special
40s & up...Sculpting a new U

Faith makes all thing possible
Love makes all things happen
Hope makes all things work

God is Good all the time. All the time GOD is good.

Let your life be like Angel Food Cake...sweet and Light---




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GRAMMACATHY
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11/26/12 11:45 P

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Praying.

I also have a friend that is 60 and also got diabetes at that age. She keeps her sugar and insulin well managed with all the new equipment and technology.



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DEE107
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11/25/12 11:17 P

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prayers for the little one

DEE Southern New Jersey
CARETAKER'S OF OUR LOVE ONE'S
SP Class of Oct 12-18 2008.
Losing Weight & Disabled
Menopause & Losing
Secrets of Life
Grandpas & Grandmas Are Special
40s & up...Sculpting a new U

Faith makes all thing possible
Love makes all things happen
Hope makes all things work

God is Good all the time. All the time GOD is good.

Let your life be like Angel Food Cake...sweet and Light---




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BRAVEONE92
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11/25/12 8:44 P

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I am sorry to hear news like this, about a young boy 4 years old. However, it
happens. I have a grandson that has juvenile diabetes. He started when he
was about that age. He is doing fine so far. He has an implant where he
gives himself insulin. His age is 20 now.

"I lift up my eyes to the hills-where does my help come from?
My help comes from the Lord, the Maker of Heaven and Earth."
Psalm 121: 1-2 (NIV)


 
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MAYBER
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11/25/12 5:58 P

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My sister just found out about a great grandson who was diagnosised with juvenile diabetes he will have to take shots for the rest of his life he is 4 years old his name is Brody and he lives in NE keep him in your prayers please
One day at a time

Edited by: MAYBER at: 11/25/2012 (17:59)

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DEE107
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11/11/12 11:48 P

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praying

DEE Southern New Jersey
CARETAKER'S OF OUR LOVE ONE'S
SP Class of Oct 12-18 2008.
Losing Weight & Disabled
Menopause & Losing
Secrets of Life
Grandpas & Grandmas Are Special
40s & up...Sculpting a new U

Faith makes all thing possible
Love makes all things happen
Hope makes all things work

God is Good all the time. All the time GOD is good.

Let your life be like Angel Food Cake...sweet and Light---




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MAYBER
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11/11/12 9:10 P

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Praying for all those with special needs children and know that God entrusted that child with them for a reason and probably because He knew they had hearts of love
One day at a time


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DEE107
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8/4/12 11:30 P

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how true

DEE Southern New Jersey
CARETAKER'S OF OUR LOVE ONE'S
SP Class of Oct 12-18 2008.
Losing Weight & Disabled
Menopause & Losing
Secrets of Life
Grandpas & Grandmas Are Special
40s & up...Sculpting a new U

Faith makes all thing possible
Love makes all things happen
Hope makes all things work

God is Good all the time. All the time GOD is good.

Let your life be like Angel Food Cake...sweet and Light---




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MAYBER
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8/4/12 9:17 P

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you are in thoughts and prayers and you are not alone Jesus is closeby to give you the strength you need to cope with you situation all you need to do is ask and rely on Him
One day at a time


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DEE107
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6/13/12 11:39 P

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thanks Barbara

DEE Southern New Jersey
CARETAKER'S OF OUR LOVE ONE'S
SP Class of Oct 12-18 2008.
Losing Weight & Disabled
Menopause & Losing
Secrets of Life
Grandpas & Grandmas Are Special
40s & up...Sculpting a new U

Faith makes all thing possible
Love makes all things happen
Hope makes all things work

God is Good all the time. All the time GOD is good.

Let your life be like Angel Food Cake...sweet and Light---




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BRAVEONE92
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6/13/12 10:04 P

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Dee, I know that you are still grieving. May God bless you and give you peace.

JESCOBED, I know it's very hard to take care of your son and at the same
time, to get other things done. I have had colic-like pain before, and now
I know exactly how it feels for a baby. It is extremely painful. Please come
here as often as you have time to post. We look forward to hearing from
you. Praying for you and your son.

"I lift up my eyes to the hills-where does my help come from?
My help comes from the Lord, the Maker of Heaven and Earth."
Psalm 121: 1-2 (NIV)


 
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DEE107
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6/13/12 9:39 P

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hello everyone and great stuff thanks for sharing and praying for your little one

DEE Southern New Jersey
CARETAKER'S OF OUR LOVE ONE'S
SP Class of Oct 12-18 2008.
Losing Weight & Disabled
Menopause & Losing
Secrets of Life
Grandpas & Grandmas Are Special
40s & up...Sculpting a new U

Faith makes all thing possible
Love makes all things happen
Hope makes all things work

God is Good all the time. All the time GOD is good.

Let your life be like Angel Food Cake...sweet and Light---




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JESCOBEDO8
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6/13/12 11:23 A

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Thank you all. Was feeling overwhelmed earlier this week, but the energy has shifted a bit today. It's true that stress and worry can make you go haywire and want to skp workouts and EAT!
My son was so fussy Mon & Tues. Because he is immobile, he suffers from colic quite frequently. I've restricted his diet to eliminate carbonate beverages, teas, certain vegetables, popcorn and dairy. The situation has improved in the last year, but he still gets really agitated when a severe colic attack comes because I can imagine it hurts. My workout yesterday came in the form of holding him w/ my arms wrapped wround his upper torso and "walking" him around my living room. He likes that. He's so skinny, but tall like his dad. He weighs about 55 lbs now. That helped the colic problem some. But talk about a stressful afternoon. Thank you to all who have responded and introduced themselves. I know I'm not alone in my situation, but it can be so isolating sometimes. That's why I don't go to a gym. We bought a really nice treadmill and elliptical machine so I work out here at home. Wishing you all a good day today!

Edited by: JESCOBEDO8 at: 6/14/2012 (00:23)

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GRAMMACATHY
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6/12/12 12:48 A

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Hi Jovi,
I hope you have been able to connect with other mother's with children with CP. I think the support is helpful. The families I worked with found it much easier when they could communicate with other parents. I may have worked with their children during the day, but I did not have the burden of worry and fear. It is not the work you do with your son, it is the worry that causes the weight gain. I too have worried and stressed and gained 100 pounds because of loved ones for different reasons. I finally took the airline steward advice and put the air mask on me first so I could care for others and have managed to lose 50 pounds and also find help for my husband. Back to support. When, I found a person who had a veteran husband with health and brain issues I felt like I had found a sister. It was so comforting to know I was not alone. My Spark friend Angelita333 was my neighbor when she was little girl. She has a 20+ year old son with CP in a wheelchair. If you don't have a local support group, let me know and I will try to hook the two of you up. She was very young when she had him, but she feels the same way you do about your son. She said he was the best thing to ever happen to her and he probably kept her from getting into trouble as a young adult, but she does worry about his health, some of his friends, and if he will get good care as he gets older and she is not as strong. Sending hugs your way.



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DEE107
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6/11/12 11:30 P

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way to go and so proud you lost the weight and your sons sounds precious

DEE Southern New Jersey
CARETAKER'S OF OUR LOVE ONE'S
SP Class of Oct 12-18 2008.
Losing Weight & Disabled
Menopause & Losing
Secrets of Life
Grandpas & Grandmas Are Special
40s & up...Sculpting a new U

Faith makes all thing possible
Love makes all things happen
Hope makes all things work

God is Good all the time. All the time GOD is good.

Let your life be like Angel Food Cake...sweet and Light---




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BRAVEONE92
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6/11/12 10:24 P

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emoticon to a kind, compassionate, loving, caring, & praying Team.
We are so glad that you have joined us.

I am so happy that you have lost weight emoticon. We have to take
care of our own bodies, staying healthy, eating the right foods, and keeping
off pounds. Otherwise, we would become unable to be caretaker's of our
dear loved one. You are doing a fantastic job of taking care of your son.
I truly admire the hard work and self sacrifice, that you do to give him the
best of care.

May God bless you to stay healthy, so that your job will be easier for you.

I am a caretaker for my Mom who is 92. She doesn't live with me, but I
basically do all other things for her. She won't allow anyone to bathe her
but me. She is crippled and falls often. She refuses to move in with me.
She loves the freedom of her own apartment. It really gets tough on me,
at times, because it seems that there are endless things to do. But I love
her so much, that I wouldn't want anyone to take my place.

Edited by: BRAVEONE92 at: 6/11/2012 (22:26)
"I lift up my eyes to the hills-where does my help come from?
My help comes from the Lord, the Maker of Heaven and Earth."
Psalm 121: 1-2 (NIV)


 
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JESCOBEDO8
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6/11/12 7:02 P

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Hi everyone! My name is Jovi and I'm a mom to 2 wonderful sons. My oldest is special needs (cerebral palsy) and is in a wheelchair. He's 11 yrs old and needs 24 hr care. The love and fierce protection I feel for him, is unexplainable. There are days that I wish things were different or easier...but the love I feel in my heart for him in unconditional. I gave up my job (as well as other things) in my life, to be home to care for him. That's where my weight gain comes in. I feel guilty if I say that it was because of him that I ballooned to 202 lbs (I'm 5"2) in April of this past year. It's not his fault at all. But, I think I used the excuse that he's immobile, and needed to be lifted at least 7 times a day, that I had no more energy to even think about excercise or taking a walk to keep my weight down. The mental stress caring for someone who has a chronic condition also made me eat. Constantly. I rarely cooked, so we ate out a lot to break of up the monotony. I have a valued family and friend support system. But my husband works a lot, so I can stay at home. Believe me when that day came, that I would carry my 55 lb son upstairs to bathe him or put him to bed, and I would be so out of breath and see spots......I serious began to believe I would die of a heart attack one day. Where would my sons be if I got seriously ill or had a stroke or died?? That was my wake up card. I have lost almost 25 lbs since then and more inches than I thought possible. I still have a way to go, but I began to look at my health as a goal of valued importance. It's important because my little guys depend on me right now. I don't know what the future holds...can't worry about that. All I know is right now. I've started becoming more organized, so I can schedule cooking time accordingly. Now that summer is here, it's hard...but not impossible to eat fresh, home cooked meals. My sons both love vegetables and salads. SP has been a God-send. What a wonderful tool to keep track of our fitness journey's while meeting so many wonderful people. If we can encourage one another, I would greatly appreciate it. When I found this topic, I was overjoyed. Many people are compasionate to our struggles....but you can't really understand what it's like to care for a loved one with a physical challenge, until you go through it yourself, or see it first hand. I would love to chat with anyone here who can relate. My sons are 11 & 10 yrs old. My youngest son tells me how proud he is of my efforts so far. Lifting my son when I have to has become quite a bit easier without the extra pounds. Thanks for letting me share. If you ever need to vent, I'm here for anyone :)


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DEE107
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12/11/11 8:39 P

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Cathy glad your friend will be with your granddaughter and she will do well

DEE Southern New Jersey
CARETAKER'S OF OUR LOVE ONE'S
SP Class of Oct 12-18 2008.
Losing Weight & Disabled
Menopause & Losing
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40s & up...Sculpting a new U

Faith makes all thing possible
Love makes all things happen
Hope makes all things work

God is Good all the time. All the time GOD is good.

Let your life be like Angel Food Cake...sweet and Light---




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GRAMMACATHY
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12/11/11 2:58 A

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Thank you. We borrowed Chris's recipe for magic reindeer snacks and substituted ground nuts for sugar so the squirrely elves could enjoy them too. Had a good time tonight and forgot to take the language sample. Oh well.



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BRAVEONE92
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12/10/11 11:01 P

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Cathy, I sure hope that you can convince the kids to do what is best for
your granddaughter. You are very knowledgeable about things like
these, because of your teaching career. I am sure that you will be a
great help to her as well.

"I lift up my eyes to the hills-where does my help come from?
My help comes from the Lord, the Maker of Heaven and Earth."
Psalm 121: 1-2 (NIV)


 
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GRAMMACATHY
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12/10/11 12:21 P

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I had lunch with a former co-worker who is an SLP-A. She said the same thing. Think I will take a 50 line phrase sample and count the errors. She also said that with GD being so cognitively receptive that she could probably get through the speech this year and not have to be pulled out of class in Kindergarten. That may sell my kids on the idea of speech class. Of course the good news is she would get to go to class with my dear friends from work. She will be well cared for there and the lesson activities are first class and fun. Now to sell the kids on the idea.



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CRAZYGAGRANNY
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12/10/11 11:14 A

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Cathy do not give up..Your 4 year old will qualify for speech. I remember when Phillip talked so fast and I would calmly remind him to slow down. Of course at that time I had no idea he had A.S. I have been told over and over his abilities to talk slower and to read is due to me sitting endless hours with him and reading with him and allowing him to read back to me.

Phillip is in the 3rd grade and he now reads and comprehends 164 WPM. If he only excelled in math this well. Don't get me wrong he does great,but holds his own on not showing his work, which brings his grade down.

Now back to your GD, she will qualify for assistance, I see no reason any state would turn her down. They are making so much progress with A.S now. Keep pushing her doctors and therapist for information and make sure you follow through on all the testing available.

As for the schools, yes I have the option to home school Phillip, but for now he needs the interaction of others. In time I may have to pull him out. I work with him constantly at home and this is one reason I entered him in karate to give him more self-esteem,self confidence and self-control. It also helps him interact with others. I do everything I can to help him survive in this black and white world he so dislikes.

Hang in there my friend..we are all right here with you.

Good Luck.

Edited by: CRAZYGAGRANNY at: 12/10/2011 (11:14)


DEE107
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12/7/11 9:29 P

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sounds like fun

DEE Southern New Jersey
CARETAKER'S OF OUR LOVE ONE'S
SP Class of Oct 12-18 2008.
Losing Weight & Disabled
Menopause & Losing
Secrets of Life
Grandpas & Grandmas Are Special
40s & up...Sculpting a new U

Faith makes all thing possible
Love makes all things happen
Hope makes all things work

God is Good all the time. All the time GOD is good.

Let your life be like Angel Food Cake...sweet and Light---




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GRAMMACATHY
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12/7/11 1:15 P

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The four yo GD is unintelligable because she uses really long phrases really fast and frequently tucks her head. I would like for her to go to speech, but she can clear up her articulation in single words, so probably would not qualify anyway. Luckily, she can paraphrase for me, but I know it is so frustrating for her to not be understood.

13 yo GD chose the giving tree for our activity last night for the 24 Days of Christmas. It was great fun, but I can sure see the communication errors. I often wonder if it is because I am hyper aware due to my special ed background or is some of this typical for girls her age. My age group was birth through age five, not teens.

I had her go through her back pack again this morning. She finally removed the giant photography book she has not looked at in a month.



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DEE107
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12/6/11 10:55 P

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Your sister understands because she is with her all the time

DEE Southern New Jersey
CARETAKER'S OF OUR LOVE ONE'S
SP Class of Oct 12-18 2008.
Losing Weight & Disabled
Menopause & Losing
Secrets of Life
Grandpas & Grandmas Are Special
40s & up...Sculpting a new U

Faith makes all thing possible
Love makes all things happen
Hope makes all things work

God is Good all the time. All the time GOD is good.

Let your life be like Angel Food Cake...sweet and Light---




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BRAVEONE92
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12/6/11 10:33 P

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I have a very good friend, who has a 15 yr. old daughter, that has aspergers.
Last year she had so many emotional problems, that her parents had to take
her out of regular school, and put her in a private school.

My Sister's daughter who is downs, is doing well for the time being. She
has so much trouble walking. At home she does okay, but when they're
out in a store, they always use a wheelchair. She is 48, and has really
stayed healthy. She can say only a few words. Of course, my sister can
understand every word she says.

"I lift up my eyes to the hills-where does my help come from?
My help comes from the Lord, the Maker of Heaven and Earth."
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DEE107
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My sisters school has everything on line and they can access that way another easy way for them .. Hope Philip has a better day hugs

DEE Southern New Jersey
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Life has been hectic around here and life with Phillip is always a challenge. This week they are having Benchmark test in school which is stressful,but to Phillip he says it is only routine...NOT.
Yesterday he did not attend school. When he woke up nothing was right with the world. His cereal would not float right in the milk,his blanket would not wrap the way he wanted it too around his feet in the chair, the light was too bright then too dim,if you get the picture. I did not press the issue.

On days like this I give him the time he needs. After he finally adjusted I told him we would be doing some school work at home with many breaks in between, he said that was a great idea. I called his school counselor and made her aware of the situation and she informed his teachers, they in return made plans for him to make up the test he missed and had all his daily work and homework ready for me to pick up at the end of the day. I am so lucky to have them ready and eager to work with me.

A.S. is no picnic for the child or the parent, it takes patience, dedication and a lot of hard work on both sides to make it through.

As for the back pack...I had to laugh...Phillip keeps his backpack so full..I even went and bought he one with wheels to pull, good idea I thought....NOT! He then took the thing and carried it anyway,which put more pressure on his back! DUH! Can't win... back to the drawing board so to speak. Kids gotta love'um!



DEE107
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11/22/11 9:58 P

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I hope so too those back pack are full the weight a lot

DEE Southern New Jersey
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Let your life be like Angel Food Cake...sweet and Light---




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GRAMMACATHY
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11/22/11 7:33 P

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Her back pack is lighter. Hope she has developed a new habit.



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DEE107
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11/22/11 7:28 P

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yes children are strange and love to take everything home with them

DEE Southern New Jersey
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Let your life be like Angel Food Cake...sweet and Light---




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GRAMMACATHY
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Here is a mild ASD moment. Yesterday GD walked in the door with her 40 pound backpack full of every book she has at school and announced she has no homework last night. I asked her why on earth she did not leave her back pack at school. She shrugged her shoulders and informed me "habit". This morning I asked her to empty her back pack of everything she did not need at home tonight before leaving school. We shall see.



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DEE107
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11/21/11 11:01 P

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way to go

DEE Southern New Jersey
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Let your life be like Angel Food Cake...sweet and Light---




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GRAMMACATHY
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11/21/11 5:35 P

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My ASD GD who has been off her IEP for several years now, was having the same math problem. She wasn't showing her work. Luckily, she is interested in the As and Bs and listened when I suggested that even though it was boring and time consuming, the teacher needed to see how her brain worked. She brought her math grade from a D to a B this last quarter.

I am living with her now too. DH got dangerous with the vehicles. He was in the hospital 5 days, but I refused to let him come home because I have no control over his unsafe behaviors. So he has moved in with his son and I have moved in with my daughter. I hate being the meanie, but I was just enabling him to commit slow suicide and he was taking me with him.

GD and I went to visit him yesterday. He seemed happy to see us, but tired out after about an hour. He still is not seeing the doctor, but the kids seem to be doing a better job regulating his medicines and keeping him out of cars. The only thing we know so far is that he has severe brain lesions in addition to the kidney failure and copd and that he has missed three more doctors appts.

Anyway, I moved in with daughter and GD. DD is thrilled to have a housekeeper and someone to share expenses and leave GD with and GD is liking the company since her mother works long hours. She even made me breakfast in bed the second morning I was here.

I can't tell you how much more at peace I feel. The only stress right now is standing my ground with DH regarding his care and getting the house sold. Even the vertigo and CFS symptoms have decreased. Maybe I was just worn out from years of caring for multiple dying people and working a ten hour day job as a special ed teacher.

My children and grandchildren have been so supportive through all this. I feel totally loved.





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BRAVEONE92
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11/3/11 10:41 P

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emoticon Deanna, for an inspirational post. It is so wonderful that
you have a son that is such a good boy. I can tell that he is a help and
inspiration to you.

We all have our crosses to bear, but thank God, He will help us if we
go to Him in prayer and ask for His help. He is the only One that
we can truly put our trust in. May God bless you in every way.

Edited by: BRAVEONE92 at: 11/4/2011 (18:47)
"I lift up my eyes to the hills-where does my help come from?
My help comes from the Lord, the Maker of Heaven and Earth."
Psalm 121: 1-2 (NIV)


 
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DEE107
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11/2/11 8:43 A

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Yes Children are a blessing and the things that comes out of their mouths is so amazing hugs

DEE Southern New Jersey
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God is Good all the time. All the time GOD is good.

Let your life be like Angel Food Cake...sweet and Light---




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DONORMAMA
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11/2/11 8:33 A

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Good Morning everyone. Thank you so much for your prayers. Its prayers from so many people and the strength from the Lord that carries me through my days. I take 1 day at a time and sometimes 1 hour at a time to get through the day. I remind myself all the time that the Lord said he would not give us more then we can handle and I rely on that truths.

With it seeming like I have alot on my plate, I know in my heart that I have been blessed with so much. I have a wonderful DH, a great DS and a DD that He (God) has blessed our lives with. One of you said a few days ago that these children are blessings and I believe that. My son asked me a few days ago why God made our DD so messed up. I told him that God does not make mistakes when he is creating life, he has a purpose for everything. It can be hard for a 14yr old boy to understand that but our son is a good kid and he tries to fix everything. Some days he helps remind me of how wonderful this world is, with friends, family and a wonderful church family we (our family) have all the riches any man could ask for.

I hope that all of you feel the blessings of this day and may your days go smoothly. When things seem rough just look up and feel the sun on your face or feel the Son. You are all in my prayers.

Have a WONDERFUL day!!!!
Deanna


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DEE107
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11/2/11 8:07 A

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Deanna have a good day praying for you

DEE Southern New Jersey
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Let your life be like Angel Food Cake...sweet and Light---




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BRAVEONE92
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11/1/11 11:27 P

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Deanna, I really feel for you. I know that you have a very hard time. Praying
that you stay well and strong, so that you will be able to take care of
everything.

"I lift up my eyes to the hills-where does my help come from?
My help comes from the Lord, the Maker of Heaven and Earth."
Psalm 121: 1-2 (NIV)


 
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11/1/11 9:28 P

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its hard my friend my mother has kidney failure level 4

DEE Southern New Jersey
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Let your life be like Angel Food Cake...sweet and Light---




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DONORMAMA
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11/1/11 7:16 A

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Good Morning. Here is hoping and praying that this day will be better then the last. With a DH in kidney failure and a DD with special needs, I have learned not to ask how much more can I take, I just start my day off and running. Well its morning so its time to get my DS and DDoff to school. Hoping all of you have a wonderful day.emoticon

In my prayers
Deanna


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DEE107
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10/31/11 11:40 P

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I know he now has an aid and gets pull out of classes for one on one now

DEE Southern New Jersey
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Faith makes all thing possible
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God is Good all the time. All the time GOD is good.

Let your life be like Angel Food Cake...sweet and Light---




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CRAZYGAGRANNY
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10/31/11 8:56 P

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My friends you both are so right. During my talks with parents and grandparents I try to tell them to never give up. We are the advocates for these special ones that need us to speak out for them.
The world around us is so cruel. Teachers,and society at large only see things one way...Their way. Our "Special" ones are very unique and can change the world in so many ways,if we can let their voices be heard.

Of course I know not many are as hard headed as I...Once someone tells me it can not be done...It is Game on! Why can't my child do things "HIS" way if he gets the right answers..and he can explain to the teacher how he acquired the answer? Why does it have to be set in a certain pattern the way she or he wants it...they have to prove to me 'his' WAY is logically wrong and their way is the only politically correct way of doing things.

Phillip does all his Math in his head. He almost never shows his work,but he always gets the right answer, When asked to show his work..he can tell you how he derived at the answer,but will plainly tell you it is a waste of his time to write it all down,because the answer will be the same. Teachers can not come to grip with this. When pushed he will asked them don't they know how to do the problem? Then reply why should I have to show you then! He is not being rude just honest.

Asperger's usually are visual learners. if they can picture a problem they can solve it. He also loves to read. He is now in the 3rd grade...9 years old and at the last testing was reading and comprehending well over 160 WPM. In ELA every morning they use Phillip in special Education to read to students that can not read. They respond better to children than they do to teachers. He had one child that has Autism say two words last week. The child is 10. Never spoken, She said "Blue Eyes". and smiled at Phillip. He was so excited. He told her yes he had blue yes and so did she. The teaches were amazed and the parents were speechless and wanted to meet Phillip, but he said no. He doesn't like attention. He will continue to read to the little girl.( Phillip is not in Special Ed...the teacher comes and "borrows" him just to read)

Don't get me wrong...all my days are not easy. Phillip has some very good days and then he has some very bad days. I try to take them all in stride,but sometimes the mountains get mighty hard to climb. I keep my faith and know I never walk this path along, the days when he smiles and the gentle hugs and love I get is worth all the bad times.

The biggest hope I got was when I got his diagnoses,because from then I knew I could learn and get him the help he needs, I can do this...I can do all things through Christ who strengthens me.

Have a Great Evening!



Edited by: CRAZYGAGRANNY at: 10/31/2011 (21:00)


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10/31/11 8:28 P

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My prayers go out to all of you who have special needs children or grandchildren.
I am an aunt, to my sweet niece, who has downs syndrome. She only speaks
a few words, but her mom understands everything. Julie is 48, but is fairly
healthy. She can become very angry if the TV goes off.


"I lift up my eyes to the hills-where does my help come from?
My help comes from the Lord, the Maker of Heaven and Earth."
Psalm 121: 1-2 (NIV)


 
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DONORMAMA
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I understand ALL about having to fight with the school. Our DD is adopted and when she first came in our home as a foster child the school fought me about everything. Our DD has many issues, along with RADS, she has ADHD and PTSD(post traumatic stress disorder). She also has several health issues, she was a drug and alcohol baby and her parents shock her when she was an infant. She was having 40 to 50 seizures a day when we first got her, they are now all gone. But she has learning problems and is severally behind the rest of the kids.

Does your sister have an IEP for your nephews in school? That really helps in school cause the teachers have to follow what is written in there. For a time we even had in DD IEP that she had to carry around a small stuffed animal for comfort. And the teachers had to let her have it on her desk. I would suggest that your sister get an IEP for the boys, it really does help them and you to keep your sanity.

I hope that this is helpful. Will be thinking and praying for you and your sister. I have found that the journey we take with special needs children is often an up hill battle, but a battle that only we can take for our children.

Have a good nightemoticon
Deanna


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My nephew is now 12 and at 6 they were seeing problems and then on top of it the school says he is just too young and immature and they left him back and my sister let them ,,,,, and the children of his class called him a dummy and etc .. my sister then said he should ace the work next year but still had problems and they were not getting better took him to one child study and said he is ADAH and wanted medication only....

My sister who works as a teacher aid in PA told her look take him to childrens hospital and let him be diagnose and she did he has a series of problems his eyes are not focus they both go in different directions, then he can hear you but cant translate in his mind , and if there is noise around he cant concentrate on anything at all .. the teachers were suppose to put ears budds in his ears and he will hear without distraction ,, they didnt

One day she got a phone call he fell off his seat in class ,, a part of another disorder that happens and needed a cushion to seat on .... and guess what again they didnt do it ... so school doesnt always do what they should be doing to help a child

DEE Southern New Jersey
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God is Good all the time. All the time GOD is good.

Let your life be like Angel Food Cake...sweet and Light---




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CRAZYGAGRANNY
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10/31/11 1:11 P

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WOW! Seems like we hit the jack-pot! SPECIAL NEEDS CHILDREN!

I as a parent and grandparent hold this issue very close to my heart. I hope all members will join in and tell us about your children.

Phillip is 9 now and YEAH! He went on his first ever sleep over this past Friday night...without family that is....His karate club had their Halloween sleep over and Phillip actually invited a friend from school and stayed all night. This was a major accomplishment.

Cathy,Barb,DonorMom and everyone Thanks for joining in and sharing information. Please feel free to continue to not only share facts about your loved ones but any information that would be useful.

I know Asperger's is most often missed diagnosed. Phillip is doing so much better. Eye contact is still not so good,nor is his social skills. He is very intelligent and his grades are remarkable.

My biggest problem so far is fighting with his doctors about medications. I have chosen natural supplements...which are working great....but his doctors say there is no way they can do the job....my reply is well something is working and that is all he is on! I hate to see him on drugs so early in life.

Have a great week my friends,
Barbara



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10/31/11 8:18 A

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Good morning hoping that everyone has a good weekemoticon
Thank you for your prayers.

Deannaemoticon


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DEE107
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10/30/11 10:18 P

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Deanna Praying for you and your family its hard and its not easy esp for a child with special needs

DEE Southern New Jersey
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Faith makes all thing possible
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God is Good all the time. All the time GOD is good.

Let your life be like Angel Food Cake...sweet and Light---




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DONORMAMA
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10/30/11 7:58 A

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Good Morning everyone. Sorry I have not been on for a while. I have been reading up on what has been going on and keeping all of you in our prayers. This topic is very dear to my heart also. I have 2 nephews with Asperger's and my daughter has RADS( Reactive Attachment Disorder). Rads has ALOT of the same symptoms as Aspergers.

Grazygagranny and Grammacathy- my heart goes out to you. Dealing with children with special needs can be trying at times. My daughter actually just had to move in with my sister for a few months cause she (dd) is having trouble dealing with my DH kidney failure. She is only 8 years old so it is hard to explain to her why Daddy is getting sicker. Kids with special needs don't understand why doctors can't fix everything. They have such a "simple" way of thinking, it makes me wish that I had that same way of thinking on most of my days.

My sister and I both watch that show "Parenthood". It gives us a chance to just laugh about some of the same issues that we deal with in our kids. I wish that there was more TV shows that deal with childrens issues, that can make us feel better about our kids. Some days we feel all alone in this world, especially when we deal with the school systems.

I hope that all of you have a good Sunday. And for those of us in the east that got our !st snow, I hope you all are staying warm. Keeping ALL of you in my daily prayers. Remember prayers can get us through everything.

Deanna


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DEE107
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10/30/11 12:26 A

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praying for them hugs

DEE Southern New Jersey
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Faith makes all thing possible
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God is Good all the time. All the time GOD is good.

Let your life be like Angel Food Cake...sweet and Light---




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BRAVEONE92
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10/28/11 11:10 P

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Thank you so much for praying for my sister Frances. She now, has
another problem, her mouth is extremely sore. Even though she has
been to a doctor, it seems it's not healing. I didn't mention it before,
but one of her kidneys has already dried up. She has stents in the
other one. It seems that her physical problems are countless.

As her family, we can't understand how she even manages taking
care of herself, plus her DH, who is falling for reasons unknown,
and taking constant care of Julie.

I could write a book about my sister's life, however, I'm not into
writing. When we were young, we sang & harmonized together,
and I have to say, we were good. She had a happy life as a
child. After marriage, terrible things starting happening to her
and DH. He was good to her. It was things that affected both
of them. They had their 50th wedding anniversary this year.
They both love God and serve HIm. Troubles can break
a marriage, but God has been with this dear couple for sure.

Edited by: BRAVEONE92 at: 10/30/2011 (18:30)
"I lift up my eyes to the hills-where does my help come from?
My help comes from the Lord, the Maker of Heaven and Earth."
Psalm 121: 1-2 (NIV)


 
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DEE107
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10/26/11 8:43 A

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Good Morning Thanks Cathy and Barbara for all the great info

DEE Southern New Jersey
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Faith makes all thing possible
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God is Good all the time. All the time GOD is good.

Let your life be like Angel Food Cake...sweet and Light---




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GRAMMACATHY
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10/26/11 12:29 A

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Francis is in my prayers. I hope she accesses respite care too.



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DEE107
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10/25/11 11:37 P

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adding your sister to my prayer list

DEE Southern New Jersey
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Let your life be like Angel Food Cake...sweet and Light---




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BRAVEONE92
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emoticon again Cathy, for giving us even more information about
gifted and special children. I really appreciate it lots.

My sister has done a fantastic job taking care of Julie. I appreciate
that she has given up freedom of being like other moms and women,
and is not resentful. My sister is not in good health, she has lots of
medical problems, some that have been serious. Mom & I have often
thought that she may pass from this life, before Mom. I'd appreciate
prayers for her. My Sis's name is Frances. Right now she is suffering
with diabetes, fibromyalgia and stomach pain.

"I lift up my eyes to the hills-where does my help come from?
My help comes from the Lord, the Maker of Heaven and Earth."
Psalm 121: 1-2 (NIV)


 
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DEE107
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10/25/11 3:32 P

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thanks Cathy

DEE Southern New Jersey
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Faith makes all thing possible
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God is Good all the time. All the time GOD is good.

Let your life be like Angel Food Cake...sweet and Light---




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GRAMMACATHY
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10/25/11 1:53 A

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Children with Downs are sweet, social and very aware of how the other person is feeling, however because they have so much difficulty communicating, they often get frustrated and get a little stubborn, hence the "Want it My Way" syndrome.

The researchers have learned that the more physical activity and stimulation the more independent the children are as adults. 48 years ago, special ed was a place to babysit and because children with Downs are so dang cute, they often got spoiled. Basically, the doctors did not offer much hope, so just told the parents to either institutionalize them, or take them home and love them. Of course now we know that children with Downs run the gamut. Corky made a great actor. When I was getting my masters, I met an adult who had gotten his drivers license. He could only speak in three word sentences, but driving was so important to him that he studied and practiced till he was very good.

He was part of a team of five disabled adults that worked together to remain independent. He was their driver. The one with autism handled all their finances. The one that did most of the speaking at the inservice was their promoter. Each person had a job that complimented the group. It was pretty cool.

When DH was still somewhat active, we used to joke that it took both of us to make one whole person.

That group of people founded a group of five to compliment each other. Frankly, I think it was brilliant.



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DEE107
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10/23/11 10:54 P

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Down children are so special and sweet .... and to teach them is another great gift not everyone can do it

DEE Southern New Jersey
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Faith makes all thing possible
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God is Good all the time. All the time GOD is good.

Let your life be like Angel Food Cake...sweet and Light---




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BRAVEONE92
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10/23/11 9:18 P

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emoticon Barbara & Cathy for making us aware of these different
kinds of issues, that many children have these days. This is all interesting
and educational to me. Thanks to both of you for sharing.

Best Wishes to all your Special Children. They are precious.

My sister's first baby was a girl that has downs syndrome. That too, is
imbalance of chromosomes. She had a birthday in July, and is now
age 48. When she was born and the doctors advised my sister that
she had Downs, none of us had ever heard of anything like this. To
my knowledge, I had never seen one. As most of you know, they
have definite facial features and similar body shapes. Julie is so
sweet, she doesn't talk, but understands a lot. She obsesses for
the America Flag. Every time they take her to the store, they
cannot leave without buying a flag. She used to obsess over listening
to certain music artists. Now, she is into watching Major ball teams
on TV. She goes nuts, if something happens to the TV. She can be
very aggressive and combative with her parents and has actually
hurt my sister a few times. She is now, not able to walk in stores,
they put her in a wheelchair.

She stills goes to what is called workshop. I don't actually know
what kind of teaching she gets at this time in her life. She has
been in schools since she was very young.

My sister has to bathe her every night. She is treated almost
like a toddler. She has been a challenge to her mom, but
to my sister, this is her baby and she couldn't imagine life
without her.

Five years later, after Julie was born, my sister had another
child, a daughter. She teaches special education. She
chose this because of her sister. She just got her Master's
Degree and wants to teach at the high school level. She
hopes for a high school job next year, regular classrooms.

"I lift up my eyes to the hills-where does my help come from?
My help comes from the Lord, the Maker of Heaven and Earth."
Psalm 121: 1-2 (NIV)


 
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DEE107
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10/23/11 9:01 P

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learning so much

DEE Southern New Jersey
CARETAKER'S OF OUR LOVE ONE'S
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Faith makes all thing possible
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Hope makes all things work

God is Good all the time. All the time GOD is good.

Let your life be like Angel Food Cake...sweet and Light---




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GRAMMACATHY
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10/23/11 2:36 P

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My dear friend's grandson has Wolf Horschon Syndrome. It is a chromosomal abnormality. He is the friendliest child, but has many motor problems and slow cognitive development. However, even as a four year old he was aware of other's needs and had compassion and a sense of humor.

They have been accidentally following the same path as my GD. Because he was staying with his grandparents while his were at the hospital with a baby sibling he did not survive (same syndrome with heart anomaly) he was unable to access special ed from his home state. (we live on the border.) Both grandmas worked for Head Start and were able to get him in with an assistant. So he increased his excellent social skills and because he knew how to transition and sit quietly at circle he is in kindergarten three days a week and special ed two days a week. Instead of being in a self contained classroom, he gets to have some direct instruction and be with a group of higher functioning special ed peers.

I could not be more excited. The blending of the two programs seems like the best balance. I know the typical classroom pushed GD to behave more like her typical peers and the speech classes helped her learn to communicate more effectively.

I hope the same for my friend's grandson he is such a likable little guy. His mother is pregnant again. This time an accident, but this pregnancy is healthy and they are looking forward to a little girl. I hope that all her chromosomes are in tact and that she will be a wonderful little sis to her loving big brother.





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DEE107
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10/22/11 9:03 P

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Cathy My sister is a lot like your daughter thanks

DEE Southern New Jersey
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God is Good all the time. All the time GOD is good.

Let your life be like Angel Food Cake...sweet and Light---




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GRAMMACATHY
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10/22/11 1:11 A

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Sorry for being so long winded, but as you can tell this is near and dear to my heart on multiple levels.



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DEE107
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10/21/11 11:22 P

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thanks Cathy

DEE Southern New Jersey
CARETAKER'S OF OUR LOVE ONE'S
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Faith makes all thing possible
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God is Good all the time. All the time GOD is good.

Let your life be like Angel Food Cake...sweet and Light---




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GRAMMACATHY
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10/21/11 10:47 P

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Since I was a special ed teacher for birth through age five it was difficult watching my granddaughter losing language and skills at about 18 months. She went from 1-3 word phrases to no language and no eye contact, toe dancing and hand flapping. She started lining up her toys and obsessing about her shoes. They had to be on.

I kept calling it a processing disorder because my daughter would have freaked if I would have used the "A" word. (She babysat a severely autistic girl when she was a teen and that was her vision of autism.) Luckily, DD agreed to have her language tested at age three and GD landed in my co-workers classroom with the ASD eligibility. She got exemplary early intervention and then a former co-worker who was working at the elementary school transferred her to traditional kindergarten with an EA. Also the perfect strategy. She was able to learn social skills from her peers then.

Her parents insisted she rise to the top and held mostly good expectations for her. I think that helped too. This last year her Dad finally told her she was autistic. She seems okay with it now. She has the ability to memorize easily, so school work is a breeze. She has been off the IEP since the end of 4th grade. She gets A's and B's.She has gathered her own clique of close friends around her and they mostly consist of delightful teens with ADHD or aspergers. They all have good moral fiber.

She still misses some social cues, but she even memorized good manners and the need for them. She practiced making eye contact till she is even better than me. We are still working on the "Thank You". She still obsesses about things. Last year it was ghosts, so we started encouraging her to write stories about them. She is an incredible writer. This year she developed an anime that she obsesses over, so her friends started a fan club, and now she produces animation, slides and cartoons in MS Paint and posts them on You Tube.

Other than seeming a little immature, which she acknowledges and says she is not interested in growing up to soon, most people could not even pick out the autism. Those traits and deficits have been turned into something good and productive.

Autism really is the disorder where the possibilities are limitless. Many specialists speculate that both Einstein and Bill Gates were/are high functioning autistic.

Our grandchildren have unlimited futures for them as long as they are allowed to learn using all their senses. Most children with autism are visual or hands on learners and to be successful, they need their environment adapted so they can cope without too much stimulation distracting them.

I think my favorite ASD character on TV is the young man in the Syfy show Alpha's. He actually reminds me of a former student.

Barbara, for some reason I think Phillip is near my GD's age. She is 13. I think it is harder for teen boys, because they have to deal with the aggression hormones. But they can memorize strategies and cope quite well too.

My GD is the long haired girl with the dinosaur on my SP page.

Edited by: GRAMMACATHY at: 10/21/2011 (22:51)

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CRAZYGAGRANNY
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10/21/11 8:11 P

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Not too many people have heard of Asperger's. I too was at a lost when Phillip was first diagnosed. It is like a whole new learning experience for me.



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I had never heard of this until I started watching the TV show "Parenthood."


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CRAZYGAGRANNY
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Please do and I have so much more!



DEE107
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10/21/11 1:08 P

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thanks for sharing need to pass this on to my sister

DEE Southern New Jersey
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Let your life be like Angel Food Cake...sweet and Light---




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CRAZYGAGRANNY
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10/21/11 10:36 A

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As most of you know my Grandson Phillip has ASPERGER"S SYNDROME.

Now the problem is not many people know what this is; I know when he was first diagnosed I was completely in the dark.

But with all challenges the Lord hands me I accepted this challenge straight on and started doing my research.

I am still learning and my main focus now is trying, not only to help Phillip, but to try to educate others and myself on how to help these exceptional intelligent people to use their knowledge to survive among us.

Our world seems almost black and white to them. Their thinking is so vivid, they conceive things so literally. I am amazed at the things I have already learned and I have not even covered the main basics yet.

I am in awe at the amount of children and adults that are misdiagnosed with AHDH or other symptoms that are so similar to Asperger's. This leaves these children and adults searching for answers, usually not found unless the proper diagnoses is made.

So often I hear I don't want my child to have Asperger's...It is a form of Autism. Well let me tell you my feelings on this...I am thankful my Grandson has Asperger's Syndrome! This has given me the road map I need to guide him in the direction to succeed in life. Also I am so grateful he is healthy.

We as parents and grandparents only want the best for our children. Now I have the tools I need to make life better for my child.

Here is some information I have found...Hope this helps you understand some of the basics of Aperger's Syndrome.

Barbara



Asperger's Syndrome
Asperger's syndrome, also called Asperger's disorder, is a type of pervasive development disorder (PDD). PDDs are a group of conditions that involve delays in the development of many basic skills, most notably the ability to socialize with others, to communicate, and to use imagination.

Although Asperger's syndrome is similar in some ways to autism -- another, more severe type of PDD -- there are some important differences. Children with Asperger's syndrome typically function better than do those with autism. In addition, children with Asperger's syndrome generally have normal intelligence and near-normal language development, although they may develop problems communicating as they get older.

Asperger's syndrome was named for the Austrian doctor, Hans Asperger, who first described the disorder in 1944. However, Asperger's syndrome was not recognized as a unique disorder until much later.

What Are the Symptoms of Asperger's Syndrome?

The symptoms of Asperger's syndrome vary and can range from mild to severe. Common symptoms include:

Problems with social skills:

Eccentric or repetitive behaviors:

Unusual preoccupations or rituals:

Communication difficulties:

Limited range of interests:

Coordination problems:

Skilled or talented:

How Common Is Asperger's Syndrome?

Asperger's syndrome has only recently been recognized as a unique disorder. For that reason, the exact number of people with the disorder is unknown, although it is more common than autism. Estimates suggest Asperger's syndrome affects from 0.024% to 0.36% of children. It is more common in males than in females, and usually is first diagnosed in children between the ages of 2 and 6 years.


How Is Asperger's Syndrome Treated?

There currently is no cure for Asperger's syndrome, but treatment may improve functioning and reduce undesirable behaviors. Treatment may include a combination of the following:

Special education:
Behavior modification
Speech, physical, or occupational therapy:
Medication : There are no medications to treat Asperger's syndrome itself,

Can Asperger's Syndrome Be Prevented?

Asperger's syndrome cannot be prevented or cured. However, early diagnosis and treatment can improve function and quality of life.

TO LEARN MORE READ THE FULL ARTICLE AT;
www.webmd.com/brain/autism/mental-health-a
spergers-syndrome


Edited by: CRAZYGAGRANNY at: 10/31/2011 (13:13)


 
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