| Author |
Message |
Susan_2
Registered user
Username: Susan_2
Post Number: 832
Registered: 11-2002
| | Posted on Thursday, August 12, 2004 - 11:49 am: |     |
Melissa, I will send Colleen my e-mail address to send to you because I don't want to put it on here for the entire world to get. I hope your daughter is o.k. Tourette Syndrome runs in my family very strongly. I have TS. My dad had TS. And, two of my sons have TS. Also, OCD is prominant in my kin as is autism. The only way I could get my kids the help they needed I had to turn over custody of them to the county. I hear that low income parents don't have to do this anymore if their children need mental health placement. I'm glad the system has changed. I'm sure it is very emotionally draining in dealing with B. How old is B? |
Colleentinker
Registered user
Username: Colleentinker
Post Number: 557
Registered: 12-2003
| | Posted on Thursday, August 12, 2004 - 4:46 pm: | |
Isn't is amazing that we live for a God who is actually present in cyberspace? Virtual reality intersects with Reality, and what we experience is REAL fellowship and unity in the Holy Spirit. It's all too wonderful and beyond words.
Colleen |
Flyinglady
Registered user
Username: Flyinglady
Post Number: 442
Registered: 3-2004
| | Posted on Thursday, August 12, 2004 - 8:56 pm: | |
AMEN!!! God really is in cyberspace and one day that will be our reality. I cannot began to express what this fellowhip means to me. As Colleen said, "it's all to wonderful and beyond words.
Diana |
Tealeaves
Registered user
Username: Tealeaves
Post Number: 120
Registered: 5-2004
| | Posted on Thursday, August 12, 2004 - 9:59 pm: | |
Autism and autoimmune problems etc.....
Since you are speaking of Autism, I thought I'd tell you about a product I was recently introduced to. A Christian company makes it. It is a naturals program that is aimed at making the body (specifically the immune system and the endocrine system,) healthy enough to heal itself. There is actually a whole bunch of research that has gone into the products, and it is very positive. MIT named their product one of the 10 technologies most likely to change the face of healthcare this decade.
Anyway, people have reported some very astounding results from it's use in Autism, as well as Celiac, thyroid diseases, Diabetes, cancer (taken along WITH chemotherapy), Multiple Sclerosis, allergies, heart disease etc....
I hear about it, but was very hesitant to try it because 1) it is very expensive, and 2) it has a whole multi-level marketing aspect that I don't like in the least.
But I did a bunch of research on it, and since I have thyroid problems and Celiac, I decided to give it a try. I have been on it for 2 months, and plan to try it for a year to see if it makes enough of a difference to keep it up. So far, my anemia has disappeared, and I don't have the "chronic fatigue" symptoms I have had for years. I also haven't had a migraine since I started it.
The claims to health I have heard are pretty amazing, especially from people who have autistic children on it. And the actual scientific research on why and how it works seems to make a lot of sense.
Because people rave about it so much, I really am still hesitant to actually recommend it, but I also think that health is important enough that I'd try it with my kids if they were sick and I thought it could possibly help them. (and obviously I am trying it myself.)
If you happen to want any info, let me know, I can direct you to sites where you can research it, or even find someone who is more familiar with it. |
Melissa
Registered user
Username: Melissa
Post Number: 427
Registered: 7-2003
| | Posted on Friday, August 13, 2004 - 7:25 am: | |
Susan, B is 37. It's not so emotional dealing with him any more. I've really had to accept that B is probably one of the hard SDA nuts and I've told him several times that if Christ himself told him EGW was a false prophet, he'd probably find a way to tell him he was wrong too. Some things you just can't fight and his desire to be adventist is one of them.
Also, putting Rachel in her program was the best thing I've done for her. She is in a family where she is the only child, in a community that is much more laid back than the Kansas City busy-life. Yet, she's only an hour a way. Her "foster" parents are both Christians and he was a pastor in California before moving here to marry. Her foster mom has a family friend who used to be a group home mother for DD adults, and though she has her own kids, she takes Rachel occasionally and they treat her like part of the family. They have a horse, which she loves. They have given Rachel more "normal" social interactions, even inviting her over for sleepovers. I didn't have those resources. Her foster family is committed to her. They tested having another foster child, but Rachel responded so negatively, they declined...even though it would have meant more money for them. God brought that family to me, I am sure of it. And as much as I miss my daughter and wish she were "normal" and apart of our family, I know God is providing for her what I as a single parent could not. Sometimes, we have to let go and trust God with what is best even if it hurts. She had great psychiatrists and behavior specialists, Rachel's needs just could not accommodate our environment. She couldn't handle daycare or even Sunday School. The autism, while inconvenient, is not her main problem. It's the retardation in general. She functions at a 3 year old level academically in almost everything, though 14 (of couse, we have been blessed with the 14-year old hormone swings...mentally retarded does not equal physically retarded... heavy sigh!).
I am always interested in what's out there that might help, but understand I've given up looking for the silver bullet to be a magic cureall. Emotionally and psychologically, I couldn't handle the strain (hope followed by disappointment)... we've tried so many docs and so many things. I would be interested in the info, Tealeaves. I just tend to be highly skeptical at this point. Rachel seems to be who God wants her to be for whatever reason. i have had to submit to his sovereignty on that even though I don't like it or understand it. But I always pray he'll heal her too, so I have to be open for that option however it may come.... |
Flyinglady
Registered user
Username: Flyinglady
Post Number: 446
Registered: 3-2004
| | Posted on Friday, August 13, 2004 - 7:51 am: | |
Melissa,
It sounds to me like you have been to hell and back what with B and his adventism and placing your daughter with another family. That must have been heart wrenching. Do you visit Rachel on a regular basis?
I have worked with small retarded, autistic children and gotten tremendous results with them. This was in 1966-68. I am just thinking out loud. It was a work I really enjoyed, but it is still not accepted by the AMA, Am Pediatric Association and some others.
I am glad you found a good Christian home for your daughter. It took a tremendous amount of strength to do what you did.
God is caring for you and your children and He is awesome.
Diana |
Melissa
Registered user
Username: Melissa
Post Number: 429
Registered: 7-2003
| | Posted on Friday, August 13, 2004 - 8:01 am: | |
I have Rachel home once a month. I am looking for a new house right now because Jonathan has taken over her room, but she needs a space to recognize as her own, even though she doesn't live there. I want her to know she is still part of our family. I started her with OT, PT and speech when she was 18 months old. She still struggles with her fine motor skills, but her speech and gross motor have developed very well. Whenever I wish she would be quiet (she talks constantly it seems), I remind myself that I paid a lot of money so she could talk. :-). They have worked with her on stringing beads and pegboards, she is getting better with silverware, but it is still a challenge to her. Everything is so hard for her, it seems.
It has been very emotionally draining, but let me tell you what I tell most...I know what unconditional love is. I know how God can love me because I love Rachel. I'm sure in his eyes, I'm just a similar form of imperfection, yet because I love Rachel, I can really understand at some level how God can love me. I never really understood that before I had her because I just knew what a wretched sinner I was. My own perfectionistic tendencies were my own worst enemy. But I know so much more about grace now. I wouldn't wish it on anyone, and I"m so sorry it seems God had to use my child to reach me, but I am confident Rachel and I will have a glorious eternity where the physical limitations will be gone and I can truly commune with my daughter. There is a great deal of peace in that as well. You have to take the positives where they exist. |
Hrobinsonw
Registered user
Username: Hrobinsonw
Post Number: 20
Registered: 7-2004
| | Posted on Friday, August 13, 2004 - 8:20 am: | |
Melissa,
Rachel is a unique child and she brings out the best in you. I wish you the best. It sounds like you have been through alot. Rejoice in your sufferings, suffering brings perseverance, perseverance brings character, and character brings hope (Paraphrased from Romans 5:4). You have come a long way, you have to be one of the most hope filled people that I have interacted with. God bless you. |
Colleentinker
Registered user
Username: Colleentinker
Post Number: 564
Registered: 12-2003
| | Posted on Friday, August 13, 2004 - 9:26 am: | |
Melissa, what an amazing thing God is doing in you. I pray that He will continue to heal your heart and bring to you the work He prepared in advance for you to do. You are always an example to me of someone who is willing to let God teach her and to live by trust and faith. Thank you for sharing so much of yourself with us.
Colleen |
Melissa
Registered user
Username: Melissa
Post Number: 430
Registered: 7-2003
| | Posted on Friday, August 13, 2004 - 11:34 am: | |
I'm not always so calm about it. Sometimes I get really angry and scream at God, if you can imagine being so bold. It helps me put other things in perspective, however. Do you know how silly it seems to hear people arguing about jewelry or makeup or some of those other "critical" things adventism seems to make mountains out of? Except for the nature of Man issues which I think Chris beautifully defined a few months back (when talking to his pastor), soul sleep is a ridiculous argument as are many of the end time battles. We don't change one minute of that stuff no matter how we "believe" about it. We take daylight from our lives which we could be spending making a positive difference in someone's life and waste it on arguments about things we can neither have full certainty nor change. It's like arguing about the color of the church carpet. I guess that's my frustration with the adventist religion as a whole, besides the heretical issues, which are real and huge, they have created their environment such that people waste precious time with their families, friends and making a real eternal difference for Christ because of carnal, external nonsense. The conversations I've heard in the few SDA things I have attended are laughable. I also spent 2 years volunteering at our local children's hospital ICU. When life puts you in a tragedy, you better have a solid foundation and a real lifeline. Life happens. I get on my soapbox sometimes because people are so bogged down with meaningless details, they miss real indepth, soul moving opportunities to change a life eternally. With all sincerity, this forum is such an opportunity to me. Where people can tear off the baggage of meaningless details and come to learn how to serve Christ better today. If Christ wants to convinct you about something, he will graciously in his time (and if you ignore him, he has his own disciplinary system).
It's a real blessing to be able to share what Christ has done for me. I ask my mentor why I continually am amazed when he does the next thing for me. It's so easy to see in hindsight and so hard to trust looking forward. But do we live out our faith in words or with feet? It is not easy, and I am living poof of the goofs that can be made. It's easy to be transparent when your sin's consequence is running around about 2 feet tall. I think people must get tired of hearing about it sometimes, but it is very healing to tell and remind myself of the road I have traveled with God. I don't yet rejoice in sufferings, (and I never pray for patience anymore ... no trials needed here), but I know I have hope because that's all there is. This world, and the things of it, are all temporary. They expire and get used up. But who we allow Christ to make us is a masterpiece that will go into eternity. It truly is not about me. You all have your own stories of successes, failures and the road traveled. The ability and faith it has to have taken to walk away from family and friends seems far more difficult than raising a retarded child and all that has brought into my life.
I hope my life is not measured in days and hours. Whether long or short, I want to glorify God. |
Susan_2
Registered user
Username: Susan_2
Post Number: 836
Registered: 11-2002
| | Posted on Friday, August 13, 2004 - 3:23 pm: | |
I do not have any personal experience with mental retardation but I can immagine the challanges would be tremendous, especially in trying to teach personal hygene. I have though had a lot of expousure to Tourette Syndrome, OCD, and autism. Just recently our TS doctor retired and we've been thrust into having to find a physician with any knowledge on these disorders. I do have a son diagnosed all the above as well as schitzopherenia. He does good when he takes his medicine like he's supposed to. I have one son who was extremely hard to raise. By this I mean just plain physically draining on me. He walked in his sleep, he never slept over four hours in one stretch until age eight when he finily got put on medicine, I mean I was exhuasted and worn down, physicially tired for years. One day in exasperation I wailed at God, "Why God did you give ***** to me for my kid?" And, a wave of peace and calm came over me and into my mind I had a thought. The thought was God saying, "I gave ***** to you to be his mother for two reasons. I wanted to teach you patience and I knew you'd be the best mother in the world for him to have." I still like to believe this was from God. If not, then my fantasy served us well over the years because I took those thoughts to heart. Although I did become extremely frustrated with him on too many times he still tells me he knows that me and his grandpa have always loved him totally and unconditionally. His Tourettes is so bad. He hacks and snorts and spits so much. He spits on the walls in his sleep. It's so icky. But, you know, we deal with what we're given the best we can. Melissa, I'm so glad your daughter is in an environment where her needs and your and Jonathan's too are best being met. That is a real blessing. I have gone to enuf meetings to last a lifetime. Two of my sons grew up much of their youth in grouphomes, now incarceration. Impulse control is still an issue to be worked on. But, we somehow pull through. That is by God's Grace only. My best friend told me one time I must either have a lot of faith or I must really be stupid. I asked her to explain and she told me with what I've had to deal with emotionally either I must have a lot of faith or be super stupid because if not either of them most sane or faithless people would have either gotten rid of the child or committed sucide. I told her those were never my options. Somehow we get through and I appriciate all your prayers as they do help in dealing with these issues. |
Ric_b
Registered user
Username: Ric_b
Post Number: 17
Registered: 7-2004
| | Posted on Friday, August 13, 2004 - 6:22 pm: | |
Melissa-
Thanks for one of the most beautiful description of the difference between learning doctrine and experiencing Christ. It is so true. And a great reminder for all of us who love theology, that what is really meaningful are those things that make a difference in the lives of people around us. |
Melissa
Registered user
Username: Melissa
Post Number: 432
Registered: 7-2003
| | Posted on Saturday, August 14, 2004 - 7:18 pm: | |
Thanks, Ric. I guess I shouldn't pick only on SDAs, there are plenty of legalistic groups out there in the greater stream of Christianity that pick people apart or argue over the ridiculous. But I've never heard someone tell the pastor they need to do a sermon about not eating pork gravy or a 200 pound woman telling a 145 pound man (same height) he's not healthy because he eats meat.
I went to church tonight and the sermon was about truth. How to define it and where it comes from. The text was John 17:3. Jesus is the truth, and I was so glad to hear my pastor talk about the Biblical worldview and the secular world view in relation to truth. But first and foremost I was glad to hear him identify the truth as Christ, not some doctrine. It was a very moving service and I am continually amazed at how God is moving so vividly in my life right now. You'd just have to see it to believe it.
I am very thankful that we have a purposeful creator who does not just let things float along in the world by happenstance and consequence.
Susan, I'm sure my story sounds as hard to you as yours sounds to me. You get "used" to what you live with and learn what you can control and give up what you can't. I had a friend at work who had a son with TS. She couldn't manage him once he got to early teens because of his physical size and strength being bigger than her. But I know she loves him as I'm sure you love your sons. The platitudes people say about being strong and having faith used to really irritate me, but I've learned people just don't know what else to say to encourage you. And depending upon where you are in your journey of acceptance, there is no pat answer. What I know, as I'm sure you do too, is God loves our kids more than we do. And we have to guide them best we can and pray as faithfully as we can and then leave the results to God. It's kindof like witnessing to an SDA. or any other unsaved person. Thanks for sharing your heart. It's a hard burden to carry when you feel alone. Let me know if you ever need some encouragement. I'll gladly try to "stand beside" you these hundreds of miles apart. God is faithful, even in the dark. |
Conniegodenick
Registered user
Username: Conniegodenick
Post Number: 31
Registered: 3-2004
| | Posted on Sunday, August 15, 2004 - 7:47 pm: | |
Tealeaves: I have to echo what you said about the 8 sugars technology. My email is nutradoc@charter.net and I have seen verifiable miracles with this stuff--tell me your email address and maybe we can chat about it.
Connie |
Flyinglady
Registered user
Username: Flyinglady
Post Number: 466
Registered: 3-2004
| | Posted on Sunday, August 15, 2004 - 8:05 pm: | |
Tealeaves and Conniegodenick, please leave some web site URLs here. I have a history of chronic fatigue and though the chronic fatigue is gone, I get tendonitis in various spot throughout my body and I just want to research what the stuff can do.
I use myself as a research project.
Diana |
Debandhenry
Registered user
Username: Debandhenry
Post Number: 18
Registered: 6-2004
| | Posted on Saturday, August 21, 2004 - 8:49 pm: | |
Melissa and Susan_2,
I am catching up after being gone again and the Tourettes Syndrome caught my eye.
I too, have two sons, my oldest 33 and youngest 28 with T.S.
The oldest has a severe case and the youngest a mild, but when they were in school the problem was with ADHD along with the Tourettes and that is common but for parents as you all know all so well...Hell would properly describe well for an analogy I think. Their Dad and his mother have it and found out when the boys were diagnoised when they did the family back ground investigation.
My Peds. Neuro. told us when they were around 11 I think it was to really be aware of the drugs and alcohol due to the good feelings they would get from this slowing them down and lessing the tics.
Well, the youngest tried and did not like (Thank God) the feeling but, the oldest was another story and he is the one who on another board I mentioned was in jail for the 3rd offence of DUI. The oldest has a good job, even through all of this working with handicapped young adults in a group home, esp. the cerebal palsy young adults. He says and I quote "I do not look at myself as handicapped after working here". I think he is coming off his "Poor me, pitty pot" at last and realizing that his T.S. although embarassing at times when he can't control the tics is nothing compared to what the young adults he works with every day go through.
This has been the best thing to happen to him and the youngest has the fortune of a understanding Christian wife and they have 3 of my 12 grandchildren. My other 3 children all have the other faces of Tourettes in a barely noticable if at all way. The worst is anxiety attacks and with girls this was the worst going through the teens.
So in closing if you would like to talk further if only to trade "War Stories" and the different meds you too can contact me through Colleen and if not that is okay too.
One more thought in closing this to you, my children do belong to the brain bank that Tourettes has, that is the only way to do the intense studing into this strange syndrome is on a fresh (24 Hr.) brain. We have been members since 1976 when my oldest was dignoised. I thank God that Guy De La Tourette was the Dr. that discovered this, he was a very compassionate, patient Dr. from what I have read.
I will continue to keep you in prayer for the struggle(s) I know very well.
God Bless,
Deb 
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