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Sister With Down Sydrome

PostPosted: Tue Dec 29, 2009 11:21 pm
by PrayerWarriorForJesus
Hey y'all my sister has down syndrome and well its kind of hard because well.. its harder for her to learn u know? but the doctors said she would not be able to walk , talk, but guess what the doctors were wrong!! my sister can walk ! and she can talk to but she is still learning to talk even thought she is 10 years old now.. but still its hard on me. because well she throws things at us and well it seems i don't know what to do.. when my parents have gone to be with the Lord and i have a family of my own to take care of and a husband, children, etc u know?.. but.. if there is anyone who has loved ones who have down syndrome i kind of need help with this because well i am her Big sister and my sis don't even know how to go to the toilet yet she still wears diapers and she still drinks a bottle and.. well she don't eat a lot.. she just eats like.. pudding and mashed up foods... so i guess u can say me and my mom and dad need help, any ideas??

PostPosted: Thu Jan 07, 2010 4:09 pm
by Timothy
Well, I was waiting to post to see if anyone else had thoughts to share on this topic. But none appeared, here, so I guess I'll start.
As I often do, I shared a private pm. So even though there have been no replies in the forum, there have been replies elswhere.

While I am not familiar with the specifics of Down syndrome, maybe I can offer something in the area of the developmently delayed aspects. (?)

First I'd like to comment on the wisdom, insight, and maturity of PrayerWarriorForJesus. A child herself, yet wise beyond her years, as we can all see. Those of us with some years behind us can see that God has great plans for this mature and Holy Spirit filled young lady. For she posesses the greatest gift of all....Love.

And thats what your sister really wants the most...your Love.

PrayerWarriorforJesus, read, 1 Corinthians 13, in your bible.
If you don't have a bible, there is a "bible search" here on Oasis.
If you need help with it, just let us know. Many here will be glad to help you locate it.

Remember, prayer works! I will attest to that. Get a group together to pray on the same thing, for where two or more touch and agree and ask in His will, then...in His time, in His way, to His glory, it will be done.
Prayer can be a powerfull resource, in many ways.

Behavior is a form of communication. Just need to figure out what it is being communicated. Your sister knows what she is communicating, but because we are handicaped, we don't always understand it. (hmmm?)

Doctors said she wouldn't walk. Yet she does! Praise the Lord!
If only I had a nickle for everytime a doctor said our children won't...!
They just don't know the power and authority of *OUR* GOD!
Thank you Jesus!

There are books on "One Day Potty Training" for children with special needs. This book was originaly written for children with Downs. My son (autism spectrum) did it in two days. Some "accidents" over the course of the next month or two, but eventually soil free. The book can be found on most internet book stores and probably your local library.

Not all people learn and grow the same. We are all different. Some have more severe issues than others. but i am a firm believer that all can learn. All can grow. All can be productive in their own way as God orders all our steps. With God for us, who can be agianst us? Amen?

There are a host of other things I'll write about later.
Right now my son, with Autism and Cerebral Palsey, wants to go outside and shovel snow and make some money to spend at the hardware store.

Whats that sound I hear? A bunch of doctors eating their words I believe!

Praise the Lord!

Timothy

PostPosted: Thu Jan 07, 2010 5:51 pm
by Lionhearted
hiya sis

i'd like to second what Timothy said about ur maturity ... and i think your heart is in a wonderful place; some might be resentful that it falls on their shoulders to care for a family member ... i'm happy for you that i don't sense that in you at all *hug*

Timothy said:
Whats that sound I hear? A bunch of doctors eating their words I believe!


.... who knows what the future holds huh!!!!

my daughter is developmentally delayed; no, she's not downs, but i understand a little about needing advice and encouragement with these special children, that require extra from us ... she didn't show these symptoms when we adopted her ... but now we are starting to see that she will need "care" for most of her adult life ... sometimes i do get a little frustrated with her ... or rather, this situation ... and God gently reminds me that it was Him who put her in my lap.

but i'm on side with timothy ... i believe that God works miracles and will strengthen us and our daughter, as He will with you and your lil sis ... His will not ours.

i pray a blessing you and your family *hug*

robyn

PostPosted: Fri Jan 08, 2010 7:56 pm
by PrayerWarriorForJesus
thank ya'll.. sigh i guess i worry too much because i just worry about when my parents go to be with the Lord and when i have the husband that the Lord has picked out just for me and have children of my own(and i know teh Lord is going to show me WHo the right christian guy is) my sister will be like.. lonely and well i dont want my sister in like a HOME for down sydrome kids.. i want my sis to be really taken care of! and.. I know Nothing is Impossible wtih God everything is POSSIBLE with GOD but my sis can do alot of things l she understand what we say but uhh she gets in alot of trouble at times.. so.. i guess thats normal for her.. anyway.. i know the Lord can help my little sister Natasha *harp* *AngelYellow*

PostPosted: Mon Jan 11, 2010 2:33 pm
by Whisperingsprings
You're doing great.

Natasha will be fine but will continue to need parenting for now and that's okay. She is still trainable though it's going to take discipline and that is your parents job. As such I will pray for your parents.

God will take care of all those concerns and then some. He loves Natasha very very much and will be certain that she is cared for. Please read Matthew 6, the whole chapter. I promise, He doesn't lie. He'll provide.

I'm alot older than you and can attest to his provision and help with my own autistic child.

many hugs,
whisp.

PostPosted: Mon Jan 11, 2010 4:56 pm
by Timothy
Amen whisperingsprings,

Thank you for the insipring post.

God bless you,

timothy

PostPosted: Mon Jan 11, 2010 5:22 pm
by Timothy
Some things that work for us;

1. routines:
Each Monday is the same course of events.
Morning Clinic, school, bus ride home, active play time of his choice, dinner, homework, meds, easy play time, bed.
Every Tuesday is same routine.
Etc...

Getting bath is done same way everytime. Getting jammas on is same way everytime, brushing teeth is done the same all the time. etc...

2. picture schedules:
Pictures of the day's routine. Picture story if the routine needs to be changed. We get pictures from internet, magzines, or take photo's in advance and create a picture story.

3. picture cards:
emotion pictures on cards put on key ring. when he acts out we use them to help him communicate with us. - Or - help us communicate something we expect of him. Yelling or lecturing is just noise to him so we need to find otherways to communicate in a way he doesn't feel stress over.

We also do pictures of tasks to be performed like, getting dressed. It has to be in a certain order or he gets frustrated. or like brushing teeth.
where possible and practicle he helps choose the pictures and put them in seguence.

Support groups are great. Try to get into one. they can be found on the internet, in the newspaper, in the phone book, contacting the United Way
and asking if they have info. Also ask civic organizations like the rotary Club or the Lions Clubs, or Shriners, if they know of any resources. Local churches might have resources available as well.

Timothy

PostPosted: Mon Jan 11, 2010 6:37 pm
by Timothy
Affirmation.

You are her big sister. She looks up to you.
Make some time to play with her. Some Big Sister time.
Just the two of you. This will help to build a relationship between the two of you.
I think you may find your sister affirming you, as well. :)

Timothy

PostPosted: Mon Jan 11, 2010 7:19 pm
by Tam
pwfj Wow what a load you have on you.....but what an awesome God we server. YOU are hand chosen by God for such a time as this. You are the apple of His eye and he sees your every move. My what a crown you will have. Yoiu are His chosen people, His princess. His special daughter and He loves you so much. Hang in there sis, you are doing an awesome job and He sees you and will meet you right where you are and send you just what you need.
Love ya sis

PostPosted: Mon Jan 11, 2010 8:39 pm
by Lani
Hey PW4J *Wave*

Haven't gotten to talk to you for a while... I pray all is well and as peaceful as can be in your life with His presence.

Please know this sis.... God will provide all the direction you need when the time comes to care for your sister. At age 10, she still has a great deal of time to learn independence.

The Lord blesses us with these unique spirits many times to teach others a great deal about His endless love and mercy. You are truly special to have been entrusted with her.

Please try not to let it weigh on your heart... He will provide. It is a lot to carry but sis, your strength is evident in this post. I know that is because your strength comes from Him :)

If you ever need to talk, please know we are here for you :)
*Hug9* *hug5* *Hug9*

Prayers remain for you and your family.

Peace and Luv in Christ,
*BlessYou* Lani

*BearLove*

PostPosted: Tue Jan 12, 2010 7:24 pm
by PrayerWarriorForJesus
*AngelYellow* *harp* awww thank u very much ya'll !!! *HUGS EVERYBODY!!!!*

PostPosted: Wed Jan 13, 2010 10:22 am
by Mercy7
hey prayerwarriorforJesus. .....awwe don't worry sis, God will take care of your sister :) He always will. doctors told me I wouldnt walk either but I did, not supposed to live, but I am an adult now :) Don't feel like your alone in this, Lots of people have children with downs. Think of it as a blessing and nota burden, She couldnt h ave a better sister or parents :) Keep up the faith, sis It will carry you through, blessings sis, n if you have a question or two don't be afraid to ask, I'll try and answer or just listen. Blessings