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Special needs kids - 5/31/2008 9:14:20 PM
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iampiper13
Posts: 6
Joined: 5/31/2008
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I was just wondering if there are any parents here to special needs kids? Our 7 year old has Spinal Muscular Atrophy type2. She is in a power wheel chair and has the muscle strength of a 7 month old but her brain is unaffected (although I think shes a little weirder then most 7 yo's lol)
Steve
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RE: Special needs kids - 6/3/2008 10:10:41 PM
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locomom
Posts: 244
Joined: 4/15/2005
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My daughter at 7 yo had allergies, no muse disorders and was rather "outside" the ordinary. All children are unique; some are just more unique than others!
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RE: Special needs kids - 6/3/2008 10:20:43 PM
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stateofgrace
Posts: 1932
Joined: 4/12/2005
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quote:
ORIGINAL: locomom
All children are unique; some are just more unique than others!
That's true, and I've taken that approach with my kids, in the hopes that it would make them feel less "different" with their own challenges. DD#1 was dx'ed with early onset Bipolar, thankfully she has been stable for a number of years, and likely has Discalcula, never diagnosed but she is very much "math challenged." DD#2 is pretty healthy now, but she had severe asthma as a younger child, and due to that had a somewhat compromised immune system. Thankfully, they are both pretty much "typical" now - good health, love the Lord, DD#1 is on a good path for her future and I think DD#2 will be too. That's a lot to be thankful for. I have a niece who has type 1 Diabetes which two years after diagnosis (and with an insulin pump) is still not under control (her blood sugar swings are still at an almost dangerous level), and a newphew with Asperger's and some other conditions who it is doubtful will ever be able to live independently.
< Message edited by stateofgrace -- 6/3/2008 10:27:45 PM >
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less junk, more Jesus
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RE: Special needs kids - 6/3/2008 10:58:49 PM
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Hismusicgal
Posts: 135
Joined: 2/28/2008
From: God and to Him one day I'll return
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I am a Godly divorced mom of b/g twins. Who turned 12 yo the begining of May. Both wear glasses.
DS has ADD, Asthma, ODD, PDD-NOS( a form of autism) this last one we just found out 2 weeks ago. (My folks always thought his problems were my fault HAHA on them, even though I still can do nothing right for him (by their standards). They thought if they moved him to their house he would do better the only thing that helped is that he realized he needed his meds that her refused to take for me in the fall)But he has been late to school under their watch 11 times and on my watch only one. Those 11 times he has even been back on his meds. So what's the deal seems like I wasn't doing a bad job. But they insist that they are better than I am(they always have said that to me).
My DD is stressed out from the whole situation. No medically diagnosed problems.
Did I mention they were special needs at birth he was 4lbs 2oz (NICU-20 days) she was 2lbs 9oz (NICU-50 days) and 7 weeks early the first several years the had PT, OT, ST. ST through 3rd grade. They are finishing 5th on Monday, June 9th.
I pray:
God please bless all the special needs kids around the world. Give them and their parents the comfort and understanding of their issues. Please, Lord bring others in the communities surrounding them love and understanding that you are in these children and that they are worthwhile humans. I thank you Lord for these situations and pray that they are used for Your glory and intended purpose. Lord, I know you have given us these extra-special children for a reason and let us be able to find that reason if it is in Your Will.
Amen
< Message edited by Hismusicgal -- 6/5/2008 12:30:49 AM >
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Angel
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RE: Special needs kids - 6/5/2008 12:11:24 PM
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Karaboo2
Posts: 1651
Joined: 2/4/2008
From: Ontario, Canada
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My 7yo DD has bipolar and is being weaned off her meds for a trial 'dry run' this summer ... we're already seeing the mood swings starting again ... rages and weepiness and then being overly 'sexual' (constantly wanting to touch people and kiss and things like that ... and showing off her panties again) She also has horrible seasonal allergies, plus is very tiny for her age (people quite often think she just turned 4 ... until she talks/reads something ... then they are shocked) DD has worn glasses for 3 years.
5yo DS is hypersensitive, has extreme allergies to chocolate, soya, and artificial dyes ... he'll also cry at the drop of a hat. He has been wearing glasses for just over a year, and has eyesight that is almost as bad as my own (without glasses, I can be declared legally blind).
2yo DS used to be the always cheerful one, even though he didn't start talking until a couple of months ago ... but now he is acting like DD did prior to being medicated (her behaviour started revealing itself around this age) ... just this morning I had to restrain him during an hour long rage. He also has food allergies, but not to the extreme of the 5yo.
1yo DS seems to be the easiest thus far, although he has some food allergies as well ... at least the boys all have the same allergies, so we don't have huge troubles remembering who's who for food ...
We have one more DS who is due to make his arrival in August ... here's hoping for a healthy bouncy baby!
< Message edited by zoebob -- 6/6/2008 10:48:16 AM >
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Kara
I thought a thought, but the thought I thought wasn't the thought I thought I'd thought. So then I thought when I think a think, I'll write it down in pen and ink.
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RE: Special needs kids - 6/5/2008 2:53:14 PM
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stateofgrace
Posts: 1932
Joined: 4/12/2005
Status: online
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quote:
ORIGINAL: Karaboo2
My 7yo DD has bipolar and is being weaned off her meds for a trial 'dry run' this summer ... we're already seeing the mood swings starting again ...
Wow...I'm surprised that a doctor would take that tactic unless they believed the BP diagnosis was in error.
_____________________________
less junk, more Jesus
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RE: Special needs kids - 6/5/2008 2:55:47 PM
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Karaboo2
Posts: 1651
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From: Ontario, Canada
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I was (am) shocked too ... and even moreso because the pdoc doesn't want to see her until she has been med free for an entire month ... no visits during the stepdown stages (from March to now). The meds will be completely stopped after this weekend, so we're in for quite the bumpy ride!
_____________________________
Kara
I thought a thought, but the thought I thought wasn't the thought I thought I'd thought. So then I thought when I think a think, I'll write it down in pen and ink.
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RE: Special needs kids - 6/6/2008 9:08:02 AM
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stateofgrace
Posts: 1932
Joined: 4/12/2005
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Kara, I will be in prayer for you and your family.
_____________________________
less junk, more Jesus
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RE: Special needs kids - 6/13/2008 1:14:09 PM
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kb4good
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Joined: 2/6/2008
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Our oldest daughter is 38, severely disabled and institutionalized. She has the mentality of a 2 year old. She is Developmentally Disabled, legally blind, seizure disorder, non ambulatory, but is the truest example of unconditional love. She has taught us much. I adopted her when she was 9, I was 19.
Our 2 youngest we adopted 11 years ago. Daughter was 5, son was 3 1/2. We were told they were "very active". Well, little did we know. Daughter is diagnosed with Bipolar type 2, Borderline Personality Disorder, attachment disorder, eating disorder. She is a real challenge and I truly cherish the good times, because the bad times are really bad. She is struggling with her relationship with God right now. We pray for her daily. (sometimes, hourly)
Son has ADHD, asthma, allergies. He's actually a happy go lucky kid and has terrific friends. He is very easy to parent. He loves the Lord and seems to want to make choices which are pleasing to Him and to her parents. He does not want to disappoint.
Our other 2 were my husband's from his first marriage. The son had drug and alcohol problems and went thru Teen Challenge. He has turned his life around, rededicated his life to the Lord, works for Teen Challenge and is going to school to be a psychologist. Daughter is terrific, but has had her problems from the divorce. But God has healed a lot of her hurts and she is living a life pleasing to Him.
I feel truly blessed to have the family that God has given me.
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RE: Special needs kids - 6/13/2008 2:51:54 PM
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Auben
Posts: 1602
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From: Where pines tower and cranberries float
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My youngest son (3) has Lennox-Gastaut Syndrome, a severe, intractable seizure disorder which usually causes some brain damage by the age of 6 from the number and severity of seizures.
It's a new diagnosis so sometimes we get down about it, but I liked reading through this list because it gave me some perspective. We're very blessed that he doesn't have previous damage from a birth defect or stroke. We can do a lot to try to soften the seizures and minimize the damage. He's very healthy and fun right now through diet and medication and his big brothers are very helpful and protective.
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Tamara
~Everywhere is walking distance if you have the time~
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RE: Special needs kids - 6/14/2008 4:19:33 PM
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uponeagleswings
Posts: 2017
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From: Out here in the desert
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((Auben))- Thank you for posting the name of that syndrome. I'd been googling "untrackable seizure disorder" trying to figure out why that was written in the medical info of one of my kiddos. I now know its "intractable seizure disorder" and it makes much more sense now. I'm glad your little one is doing well.
_____________________________
Stacy Singing in the Shower "When women are depressed they eat or go shopping. Men invade another country. Its a whole different way of thinking." -Elayne Boosler
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RE: Special needs kids - 6/14/2008 10:04:50 PM
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iampiper13
Posts: 6
Joined: 5/31/2008
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quote:
ORIGINAL: Auben
It's a new diagnosis so sometimes we get down about it,
Auben: it was 5 years ago that we got the diagnosis and both me and my wife remember that day in our own way and sometimes it seems like the grieving never ends but thru the Love of Jesus we've made it this far and have more good days then bad. I remember sitting in parking lot for my wife and Jesus's Prayer in the garden came to me: Mat 26:42 Again a second time having gone away, He prayed, saying, "My Father, if this cup cannot pass away from Me unless I drink it, Your will be done."
We may not have a "normal"child but we do have a child who is in Jesus's hands and He guides and comforts us all the time!
Steve
ps: tomorrow the 15th we take Callie to her first MDA camp!! Please Pray for our trip and for us as this will be the first time we've been apart.
< Message edited by iampiper13 -- 6/14/2008 10:14:17 PM >
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