I have a question for mothers out there of special needs girls

Heather - posted on 04/21/2011 ( 79 moms have responded )

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I have a few questions and thought this would be a good place to ask them. My daughter is 10 1/2 and we were told that she could start her period before she is 12. She wears diapers and I was wondering that when she does start do I put pads in her diaper or is the diaper good enough? Do they stay in place very well? Another question I have is about shaving. Do you shave their legs or just leave it alone? I am sure I will shave under her arms when it is time. What do you other mothers do? Any feedback would be much appreciated! Thank you!

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Daphne - posted on 01/04/2012

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My daughter is high special needs. Megan is 20 but mentally rates between 6 months to 3 years. I have her onn the depo shot and have had her on that for 7 years I think? We have to get labs done every month for other issues so once a year her levels for low calcium and stuff is done as well. I think it is even checked every monty to be honest. When Megan was having her periods she was a heavy bleeder. I mean that first diaper in the morning was gross to be blunt. If she had a bowel movement in the night adding in the blood and it was very hard to handle. Megan also likes to explore and let me tell you this. having a hand touch your face after exploring a diaper with poo and blood. Yea the shot is wonderful. Sorry to be so graphic. My husband can not handle the period diapers at all he just gags and gags and I take over. Megan also had horrible cramps with her periods and could not understand why she hurt so bad. Megan hates pills and is already taking multiple pills 3 times a day. She is fine with the shot we just have to remember to make sure we keep her shots on time and do not get busy and forget. megan goes to school and I do not expect anyone else to deal with that mess.

Melissa - posted on 01/02/2012

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Stephanie, no offense to your husband but since he doesn't menstruate, he can't really understand why women of all ages (or levels of maturity) want to stop their periods. Periods may be natural but it isn't unnatural to not have them. And let's be honest, does she need her reproductive system (other than her ovaries)? If something happened as a result of not having periods, would it cause a problem in the big scheme of things? When my daughter starts her periods, I have every intention of stopping them. Cramps suck and I don't want her to have to suffer through them. On top of that, cleanliness sake...

Melissa - posted on 08/10/2013

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I just joined this group and saw this post, even though it was written 2 yrs. ago. Our daughter Emily is 10. She got her period in February. She wears diapers and I put a pad in her diaper. She has been getting it every 2-3 weeks. She also has seizures and it making her have many more seizures because of the hormone imbalance. it's driving me crazy. I did shave her legs once, but haven't done it again. I do shave under her arms though. I wonder if by now your daughter has gotten her period. I'd love if someone would post back. Thanks.

Heather - posted on 06/25/2014

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Hi Debbie,

My daughter has the Suprellin implant and has not had her period. She is 13 1/2 now and for the past couple of years her endocrinologist and I have been talking about a partial hysterectomy too. He's been doing bone age scans every 6 months to determine when to do the surgery. He wants her bone age to be 15 so we are getting close. I understand what you are going through and for me it's the best decision. My daughter has a 2 year old mentality, not potty trained, in a wheelchair and totally dependent on us for everything. My main concern is pregnancy, God forbid anybody would do anything to her. My 2nd concern is every female on my mom's side has had to have a hysterectomy for one reason or another. This includes me when I was 29. We all have to do what's best for children even when it's tough. Good luck!

Heather - posted on 01/03/2012

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Good luck with whatever you choose. There are quite a few options out there for your daughter. My daughter's endocrinologist is the one who brought her periods up with us and gave us options. Wanted to give us time to think about it and she was only 10 at the time. Her dad and I did a lot of talking, as well as her step-dad. We are all set in what we want to happen. Hope you and your husband can figure it out. It's not something to be taken lightly. Do your research and ask lots of questions. I wish you the best :)

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Debbie - posted on 06/25/2014

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Hi


My daughter Megan is 12 is severally intellectual handicapped and has started her cycle - we hav taken the decison to do a parital hysterecomy - she will never be able to manage a pregancy oer care for a child, cant take care of her own hygiene needs and is not potty trained so still in a nappy so she coulsd easily get infections

my head knows this is the best decision for Megan but my heart is being torn apart

any advise, comments?

Heather - posted on 08/10/2013

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Hi Melissa

My daughter hasn't had her period. She got the supprelin implant in her arm. This prevents her from having one. It lasts 12-15 months and October will be 1 year. When her bone age is 15-16 years old she will have a partial hysterectomy. I do shave under her arms but haven't shaved her legs. I probably never will. Have you talked to an endocrinologist about it?

Vanessa - posted on 05/14/2013

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My daughter is 12 yrs. old and I was told by her OB/GYN she can have her ovaries remove by age 21. She wears diapers at night. We are just waiting for the day she gets her period :(

Any feedback would be appreciated

thanks

Tracy - posted on 04/25/2013

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Hey I just read your post about working from home, I also have alot of education, I have my associated in Virtual Office Administration and also taking classes for Medical coding. I would love to work from home. I have two children with special needs so it is really hard for me to work out side the home. Right now my husband is not working either because my son is too heavy and I need him to help out with him. He is in a wheelchair.

Thanks for listening..

Tracy Fields

Brenda - posted on 10/24/2012

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Thank you Heather. My husband (who is a freak'n attorney) mentioned our daughter needing and attorney. The next psych visit I will ask about an ad litem attorney. We started her on birth control which is OK for now, but it is not ok for 40 years!!!! The obgyn is onboard, and her family practice Dr is onboard....just everyone is afraid of their reputations. My daughter is little, 92lbs, 18 and about 4'10". (she just gained 20lbs by putting her on abilify for agression). GOOD thing was she attacked the Dr. yesterday and YEP we attributed it to Period and I said would you write a good old note to the OBGYN/medical ethics. She said she had another idea................so we shall see.



Thanks again...I am going to pursue the ad litem, maybe if they have a court order it won't be an issue

Heather - posted on 10/23/2012

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Hi Brenda,



We live in the Kansas and it is my daughter's endocrinologist who suggested a partial hysterectomy. He deals with this a lot. The state has to hire an attorney ad litem, but he has said he has never had anyone ever say no. She just got approved for something called Supprelin. It is for precocious puberty though. This will prevent her from getting her period until we can do the partial. Does your daughter see an endocrinologist? Maybe the psych can help with hiring an attorney ad litem for you as well. I wish you luck!

Brenda - posted on 10/22/2012

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I was reading these responses, as Now I am in the same position. We have had previous discussions with the obgyn and he even took a partial to the medical eithics board, but they will not agree to it. My daughter is 18, just had her first period, won't wear diapers or under ware (yes, I'm having SO much fun today).



Can someone who has had sucessfully obtained a partial hysterectomy for their child tell me what state you live in and what area. Even the Psych agree's this is the best, just not the medical eithics board.



Thanks

Heather - posted on 01/03/2012

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You are very welcome Ayisha. Never know what you will learn until you start reading posts. It has helped me a lot! :)

Ayisha - posted on 01/03/2012

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Wow! Thanks ladies for sharing. My daughter is 7 and until now, I have not thought of all this. Thanks so much for opening my eyes to this.

Stephanie - posted on 01/02/2012

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i am also concerned for her future care, at some point she won't live home.

Stephanie - posted on 01/02/2012

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heather, she actually started her period this weekend, i haven't talked to her doc. about options yet because we didn't think she would start since she turn 18 and didn't start developing until this year.

Melissa - posted on 01/02/2012

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My daughter has had a few surgeries and I don't want her to have any more so I am going to have her take the pill. Her neurologist has said that she can just take it without taking the inactive pills (that would trigger the monthly period) so that she won't have cycles. If she did get a period then it would be light and she wouldn't notice. Ask her doctor or take her to a gyno. My OB/GYN is very understanding and has seen my daughter concerning this (as well as her neuro). Good luck with this. It isn't an easy decision. Get info about her taking birth control and share it with your husband. He might be more open to it if he is better informed of how it could benefit your daughter. And then kiss him for being a concerned dad. I hear stories all the time of women who had to do it alone because the father didn't want to raise a special child.

Heather - posted on 01/02/2012

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Stephanie,
The surgeries they do now are less painful. They can do a partial hysterectomy and it can be done vaginally. I haven't read my posts in a long time, so I don't know if I have already said this. That's how I had mine done and I was ready to go back to work in a week, but of course my doctor wouldn't let me. The only pain I had was from the gas that was still in my body after the surgery. I agree with Melissa, cramps do suck and with my family history, they are horrible! My daughter can't talk and she hurts herself and others when she is in pain and I don't want her to go through that. Keeping her clean is also a big deal for me. My biggest issue is that if she ever has to go to a home, I don't want anyone taking advantage of her and she ends up pregnant. That terrifies me! Do you know for sure that your daughter will have her period? I found out that girls with Xq deletion and other disorders, may not have them at all even though they have all the 'parts'.

Stephanie - posted on 01/02/2012

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Thanks Melissa, these are my thoughts too, i know he wants what is best for her and doesn't want her to have surgery and so forth but there really is no need for it. I really thought we would skip this issue she is so little she is only 60 lbs and 4ft.3in . I still need to talk to her dr. about options. thanks for listening

Stephanie - posted on 01/02/2012

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i also have a special needs daughter, she is 18 mentally she is about 3 she just started her period this weekend, I have mixed feelings about this she does wear diapers. just don't know if i should consider stopping them or what. my husband is very involved and feels like we shouldn't mess with something so natural but she can't tell us if she is hurting. thanks for listening :)

Kelly - posted on 08/29/2011

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happy I could assist Heather, if you need anyother ideas feel free to contact me, most of my experience is in the state of Indiana or Florida, so if it is a state issue I can guide regarding service questions but each state is different when it comes to services and schools best wishes

Kelly - posted on 08/29/2011

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Hello Heather, I am a mom of a special needs son but have worked in the field for many years, so I have seen many special needs children/adults with a variety of special needs, if you daughter wears a diaper then you can continue to use the diaper with out the pad, they do have liners that you can get from medical supply places but is not necessary, you may have to change her diaper more often just to keep her dry and avoid irritation, as for the shaving, I personally would shave my daughter but have seen this done both ways.... I have always taken the age appropriate aproach, if it is appropriat for a child without special needs then it is appropriat for a child with special needs. I hope this helps

Heather - posted on 08/28/2011

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Hi Lorna! You have the same fear I do. With a tubal there is still a chance that she could get pregnant if anything happened. They aren't 100% effective. My sister and a friend of ours both got pregnant 1 year after they had tubals. With a partial hysterectomy, she obviously won't have periods and can't get pregnant and she would still have her ovaries just for the hormones. They expect my daughter to start her period within the next year and as soon as she starts, I am calling her endocrinologist and he will insert something in her arm (can't remember what it's called) but it's a pill that slowly dissolves and lasts a year I believe. She will not have her periods while having this pill. When she turns 16 we will do the partial hysterectomy. Hope this helped!

Lorna - posted on 08/28/2011

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Hi everyone!! So glad to have found this thread! I have an almost 10 year old daughter in pullups and I have been stressing on what to do the day her menstrual cycle starts. She has severe GDD and will not understand what is going on, most likely it won't even phase her. My worst fear is her getting raped and pregnant. I had a tubal ligation and Nova Sure (ablation) done last summer with no problems. I have no periods and can't get pregnant. Would tubal ligation be as effective as a hysterectomy? And has anyone had any procedures done to their daughter yet and if so what and how did it turn out?

Jeanette - posted on 05/02/2011

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ok just came across this page and have read the advise which was usefull as my 10 year old daughter has severe gdd and epilepsy and also has to wear pads. i was worried about what was going to happen when she hit puberty as well. i have discussed this with her specialist and he said about doing a hystorectomy on her and my husband and i have still to discuss what we are going to do. she does have hair on her private areas now so i'm worried that she might start early.my sister in law has a neice who at 21 wears pads also and i asked what her parents do and she said they just change her pads more often during that time. it is very diffucult as there is so much conflicting advise and due to my duaghters gdd she is funtioning at the age of an 18 month old. i suppose you can listen to all the different advise but in the end only you yourself will know what is best for your child.

Jan - posted on 05/02/2011

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Melissa and Dionne,
Thank you for your replies to my post. I have some self-esteem issues, so I don't usually post unless I really feel like I can contribute something worthwhile and of service to others. Would love to be your Facebook friend.
Hugs,
Jan Gushulak-Moore

Dionne - posted on 05/02/2011

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As well for me in trying to decide what to do for my daughter. I will need to think through what I want to do for my daughter. She sees my menstrual cycle but she does not understand it. My older daughter saw my cycle as well, she does not have any disability outside of teenage female attitude and what she believes from her dad about me. With having the two girls, it makes me think I do need to do something to keep her from having the bleeding. She don't wipe very well when going to restroom, what would it be like for a cycle?? I am going to have to meditate on this.

It would be nice to have a spouse to chat about this with, to see if he has an opinion but his answer to everything is I don't know, I don't care, it does not accomplish much. Do any of your spouses help make these decisions or is it up to all moms??? This way I at least have some clue what others are going through for decision making.

Melissa - posted on 05/02/2011

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Jan, thank you so much for posting! It is VERY helpful to get the viewpoint of a woman who is living it! That has definitely helped me with making a decision for my daughter.

Jan - posted on 05/02/2011

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Hi, Heather,
Like others have said, I don't think your daughter will need pads inside her diapers. I have CP and I sit all day, and my periods got so heavy that I needed diapers sometimes just because of the period, but if that was combined with pads, it became *very* bulky and uncomfortable to sit on. I would suggest diapers only. I don't shave my legs at all. It is too painful. If I have to get rid of the hair, Nair or Veet work well. I am too spastic to use a razor at all. My experience with birth control is that it didn't do anything to help with cramps, but warm, dry towels on my abdomen always worked really well. I have had the endometrial ablation, also called NovaSure, and it almost stopped my period completely. That was a real blessing after bleeding heavily every month. The ablation felt like I had been mule-kicked in the stomach for 2 days, then I was fine. The NovaSure procedure only helps with the bleeding. It is not a kind of birth control at all, but it was a lifesaver for me and makes things much easier for anyone who is helping me with personal care.

Melissa - posted on 04/29/2011

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I agree with Heather. We have to stick together. I have never had any contact with other mothers of special daughters who would speak so candidly.

Dionne, send me a private message and let me know where you live. I'll see if I can research some options for you.

Heather - posted on 04/29/2011

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Dionne,
I sent you a message with my email address so check your messages. I sent one to you too, Melissa.

Dionne - posted on 04/29/2011

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My computer battery is going to die in a minute. I seem to break a lot of hearts. I only wish I was not so stupid on the relationship. I really feel like I am stupid to be in this marriage for so long but he is good at his controlling aspects. He learned from his mom and dad. I see it now. I have a case manager, we have respite for the younger two kids and my older son is on other programs to assist him with preparing to move out. The case manager really did not have anything to offer outside of spend the ssi money that is what that is for. Everyone I talk to seems to want to spend their money. It is rediculous!! I am in a small community not much here for programs or help. The childrens miracle network, was a huge disappointment as well. I occasionally find programs to help out but with being in rural MN not much is available. I keep looking when I have energy. The information you gave will help, I will work on checking into these two options. Easter seals and ma paying for the pull ups. Well time to get kids to bed.

Heather - posted on 04/29/2011

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Dionne,
I am so sorry about what you have been through and what you continue to go through. It is horrible to have a spouse to treat you that way! I know here, in the state of Ks, paras do not have to have any schooling at all. I am thinking about do that next school year. I do know it is hard to find a transcription or medical and coding billing job without having experience first, atleast from home. Call medicaid and ask what kind of help they can give you with the pull-ups. Do your kids have a case manager? They can help out a lot and look into stuff for you because they know where to look. If you don't have a case manager, they should be able to help you with that too. Also, check into Community Developmental Disability Programs in your area if you haven't yet.

Hearing your story just breaks my heart!! I would help you out if I were closer and I truly mean that! I felt like I haven't had anyone, especially to talk to, until I posted a question on here. We have to stick together even if we don't live near one another!!

Dionne - posted on 04/29/2011

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The investigator did not want me telling anyone, I do have some relatives on facebook and I don't know if they are on this site. If I knew they were not for sure I would say what happened. I thought the relative was in my circle but I don't know for sure, might have deleted me from this site. It probably does not matter if I say I would assume they all know already anyway. I don't want to get in trouble if I say over the internet and they find out about it though.

Yes, I have my days where I feel like I make progress for getting out but it seems like with the information I need to get out of this marriage I always get a stopper. I am to that point as well with his cheating, why don't these women take him off my hands, they deserve his abuse not me. Mean to say but that is where I am with all of this garbage. He pretends to be a dad when it is convenient, I call him a public parent, the only time he parents is when public people are around otherwise he could care a less about them. When he is in public trying to discipline or keep kids under control they don't listen to him then I have him to deal with as well as the kids. Frustrating!! Then when it is not convenient for him to be a pretend parent I get disappointed kids who ask where is he???

Others have told me that with the school as well, but the principle that authorizes my kids to go to the disability school said para's need a degree or higher education so I have not applied up there for that reason. I have 4 kids in 4 different schools. Granted 2 are college and 1 of the 2 is self sufficient for the most part. The other 3 I tend to. I don't know what to do, I am trying to figure out the daycare thing I guess. Maybe I am scared to make the leap, I told my 22 year old I would help him with his college until he could not do it cause of not passing or if he got his certificate. Preferrable the later of the two. He needs help with the ready of the material. Thanks for the support though, I have one person that I talk to who supports me but gets kind of pushy on my leaving. I have no job, no place to live, no money, and 2 kids for sure that I would need to take with me and I am suppose to divorce and move out NOW..... ????

Melissa - posted on 04/29/2011

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You can find some companies that will accept transcription newbies. They are hard to find but they are out there. Another option might be to get in with the school system. Depending on your school system, you may need no education to become a parapro--especially since you have personal experience. Even if you district requires education, try anyway. No school can teach what we learn as parents of special children. You can also sign up as a substitute teacher. A lot of states dont require education for that either. Best of all, you would only work during school hours.

What happened with your daughter? We won't tell. We don't know anyone that listens to stories about special kids except each other! Well, I'm sorry to hear she is back in diapers during the day.

Your husband...what a jerk. If he is cheating then at least that is less time you have to be bothered with his sorry butt. My ex-husband was the same way. He was mean and controlling. When I was pregnant with my youngest, I had to get a restraining order against him. I'm lucky that my mom is always right there beside me so she took us in. But when he cheated, I literally just thought to myself "thank god someone else is putting up with him. now I don't have to..." It is very difficult to leave a marriage but even more so when you have kids with issues and he is a jerk. Keep your head up. There is a way out, you just haven't found it yet. But, believe me, it IS there.

Dionne - posted on 04/29/2011

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Thank you for the support on the family matters. It messes with you mind when you are already dealing with a controlling spouse who uses emotions and mental mind games on you as well as complains that having special needs kids is to stressful and that is his excuse for cheating electronically and the rest of it.

I will check into the medical stores with the pull ups. My kids are daytime trained, they only need it during the night but after the incident I am not allowed to talk about yet my daughter wears them during the day again. Your right they do not fit them well anymore. I mentioned that in a different post so I won't repeat that. I do not know if we have easterseals where I am at. I am in MN, southwest corner, SD, IA, MN borders. I usually go to SD there is a larger city, more stores. Plus no one has the size the kids need where I live.

With the transcription job, I do not have any college education, but I can type. Is this something I would be able to do as well or do I need a degree. I am looking for a job as well but with talking to a few, yes it is only a few and not the whole list of daycare providers the case manager gave me. No one wants school age kids, especially with special needs, mild or worse. The kids get passed around like a basket of buns. Plus I was hoping to get a job, daycare, then get a couple bills paid off that are in my name and look stronger into divorce. But with the kids, I don't think I will get out of this marriage, at least it is not looking to promising.

Ok, sorry for this being negative, I try to stay positive. Some days it is harder. I had to get kids to bed yesterday so I was unable to keep up with the conversation.

Melissa - posted on 04/28/2011

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Ugh!! Heather, I'm sorry but the website I used to go to for legitimate work from home jobs (she searched for and posted them every day) has closed. I know it was something she did as a job so I'm not sure why she closed her site down. I'll keep looking, though. I can tell you though, be prepared to download Express Scribe. A lot of companies use that program as part of the testing for a job. I'll get on that tomorrow (its almost 11:00) and send you a private message.



EDIT:

Ok, I feel silly now. She moved her site... Here is the web address: www.workathomemomrevolution.com She has just had to restart it all so there are only one or two jobs up but subscribe and she will send out jobs regularly.



Facebook page: http://www.facebook.com/pages/Work-at-Ho...

Heather - posted on 04/28/2011

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I am not offended at all! It's funny that you mention that because I have taken classes for transcription in the past. I also just finished school in December with my Associates in Science and the classes I took were mostly for pharmacy tech, medical coding and billing and transcription. I am now enrolled to get my bachelors of science in psychology. I can't make up my mind about what I want to do! I am very interested in working from home that's why I took the classes I did, except for the pharmacy part. Please point me in the right direction!! I would really appreciate it! Thank you!

Melissa - posted on 04/28/2011

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Heather, can I suggest a job idea? Please don't get offended. Just from reading your posts, I would guess you could probably do transcription fairly well. Its a work from home kind of thing most of the time. I did it for quite some time. Generally, working from home like that also makes you an independent contractor so you are choosing when you work. They won't fire you for having to take your child to her appointments. In fact, at one point while I was doing transcription, my daughter was hospitalized. After the first day, I started back to work at night while she slept. I did it from the hospital. Since you are generally paid by the line or character, you can stop and start as needed throughout your day. (I have fibromyalgia and it was great that no one was telling me I took too many breaks to stretch or whatever.) If you are interested in that, I can point you in the right direction...

Heather - posted on 04/28/2011

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Thank you Melissa! I will get a hold of my local Easter Seals here and ask them some questions. We could really use the help with stuff for her! I have seen that website or one like it about the equipment funding. I know my local CDDO we use and other places have run out of funding to help us with certain items. They have gotten us a lift and a wheelchair ramp though! Now I am trying to find funding for a wheelchair van. I cannot put my daughter in the car anymore, so my husband has to miss work when she has doctor's appointments. If he can't do it, I have to ask her dad if he can keep her the night before, take her to the doctor, and I meet him there and he waits until it's over so he can load her into my car for me. It's starting to really hurt us financially with my husband missing work. I was fired right before Christmas of '09 for missing too much work because of my daughter. I haven't found a job since! No one wants to watch her for me so I can get a job.

Dionne...Since your kids get SSI they have medicaid right? You should be able to find a medical supply place that will take it for diapers. It has been wonderful! We order once a month to month and a 1/2. Nothing out of pocket at all. When you do find a place, they should send you samples of different diapers so you can find one that works best and in different sizes. If you tell me where you live, I can even look up info for you if you like for the diapers.

Melissa - posted on 04/28/2011

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Have a look at this site...(I made a tinyURL for it because it is long) http://tinyurl.com/3c24kfz for the diapers.

Also, I wanted to mention www.adaptivemall.com I love this site because they will set up an equipment funding account for something that you may need. They set up a webpage where friends and families can go to donate toward what you need. The money is saved and when you reach the necessary amount, they start your order process. If you decide later to use that money toward a different piece of equipment, it can be changed.

Melissa - posted on 04/28/2011

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Ladies, I highly, HIGHLY recommend contacting your local Easter Seals! They will pay for your kids pull ups, baby wipes, respite care, summer camps, travel costs for medical visits and more! In my area, we get $500 every six months to use toward the things we need. Please, please contact them! www.easterseals.com will help. The diapers we get from ES every month actually last well into the next month. I have about 3 boxes sitting in the back room...that's 3 months worth of diapers! They make sure to send you plenty!

So, yeah, my daughter wears diapers and will for the rest of her life. We had to move on past the brands you can get in the stores about two years ago. She has been much more comfortable in the ones she gets now because they are made to cover more (since, obviously, a 10 year old will pee more, though less often, than a 2 year old) and they are made to wear for longer (meaning the waist is made expand as your child's waist and hips get bigger). Trust me, once you get your child into one of the bigger sized diapers, you will realize what an enormous difference a little extra room makes.

Sometimes, you can get these diapers at big drugstores or medical supply stores but they cost an arm and a leg. I'll see if I can find the ones we have used in the past on the web and post a link.

Dionne - posted on 04/28/2011

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I have to use the kids ssi for all these items. I wil try the easter seals though. My kids have big butts, they only weight 80lbs but the pull ups wind up in the middle rather than like an underwear fit. They only use them at night as well or longer car rides where there may not be bathrooms. Heather,
that is what we use as well. They work but only half the butt gets covered, sometimes I double them up so each half is covered. Also, that is nice to know about the guardian ad litem for when I approach this topic with the development doctor. I would have to ask my friend if she had anyone assist her. I do not want my daughter pregnant either. I got a taste of how vulnerable she is!

Heather - posted on 04/28/2011

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Melissa,
Forgot to ask you something. Does your daughter wear diapers as well? If so, do you get help with the cost? I thought about asking if we could get help paying for the goodnites or something similar. They are getting pretty expensive! I change her in the middle of the night, so we go through 2 and it's like $17 per package, which only comes with 21.

Dionne,
I am so sorry for what your family is saying to you. That is just wrong! I love my husband to death, but my children will ALWAYS come first and he knows that. I don't know if that sounds horrible, but that's how I feel.

I have looked into my options about putting my daughter into a home for future reference. Where I live in Kansas, they have no place to take them close to me if they are under 18. Another option I have found out from her case manager is that they have foster homes for disabled kids. I don't plan on her going anywhere anytime soon and I don't know the age limits on those type of homes. They have been trained to work with disabled children and have all the equipment needed. The parents can take their children in and out of the home as they please. The only reason I have looked into options like that is because I have arthritis and fibromyalgia and it's getting harder to handle her. She is almost as tall as me, maybe 6 inches shorter (I am only 4'11") and already weighs over a hundred pounds. My husband has bulging discs, we are just falling apart and we are only 34 & 41!!

Heather - posted on 04/28/2011

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Medicaid pays for diapers for my daughter, but we use goodnites when she goes to bed because she wets right through the diapers. The goodnites go up to 125 lbs.

As for her hysterectomy, the doctor said the state would hire a guardian ad litem to fight for her to have it done. The doctor she has says they have never turned anyone down asking for this type of surgery. It may be easier in Kansas than in other states, but I'm not sure.

Dionne - posted on 04/28/2011

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Wow, I should have read the second page before commenting but it amazes me that there are other moms out there that are as adamant as I am about their children. I have relatives telling me turn the kids over to the state so I can save a horrible marrage or I can live my life. They do not know my kids nor have they had to llive with giving birth to a child only to find out they have a disability but that don't mean we throw them away. Thank you for the upbeat confidence to keep going with my kids!!
Melissa,
Do to an unfinished incident I can not get into details but I would say that since your child has already been through an abusive situation and she is unable to care for a child I think you should keep investigating your pregnancy preventions and do what you feel is in your childs best interest. There will always be someone who disagrees but unless these people are in our shoes they will never understand where we are coming from. That is my 2cents.

I was under the assumption from my friend that the ablation was a pregnancy prevention procedure. I will try contacting her again and ask. I would prefer to do a pregnancy prevention procedure as will since she is moderately impaired. She really does not clean herself well and hates medicines. this is a topic I was going to bring up to the development doctor at her next visit. The family doctor does not know what to do, my daughter is the first one she has had young enough to need to deal with it.

I agree with keeping the kids at home as long as possible the group institutes that they call group houses are still institutes only smaller. Very rigid rules. We already checked into one for my 22 year old. They are really good at lieing about there rules and how things are done.

Melissa - posted on 04/28/2011

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Dionne, my daughter uses Prevail briefs. They come in sizes starting where the store brands stop. I have used several brands but those have worked the best for my child. Easter Seals buys them for me and has them shipped to me so I don't really know how to go about ordering them. If you haven't already, apply to Easter Seals for help! They send several samples of whatever they provide for you so that you can try them and choose the ones that work best for you.

Dionne - posted on 04/28/2011

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What type of pull ups or diapers are ya'll using. At this time, my daughter and son us the huggies pull ups XL but they are really to small. My mom used to use depends for incontinence issues mainly urine and she said they did not work well. They leaked into her cloths.

Also I forgot to mention in my earlier post that my friend who had the ablation done to her daughter had to defend her reason for doing it. She never really said who she had to defend it to but someone or organization did oppose this procedure due to it violating the daughter's moral rights or something on that line. So if you do choose this you may have to explain why you want it done. This may depend on the city, county, or state you live in as well if you have to do this defending.

Heather - posted on 04/28/2011

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Melissa,
I hope someone can answer that for you! I would really consider talking to her doctor about that one. Really voice your concerns too! I don't think it seems ludicrous. She is your daughter, do what you think you need to do. I have never heard of that being done so I am a little ignorant on that subject. Don't wait and keep wondering about what to do. Get with the doctor and get more information on it and then decide. Your health is just as important as your daughter's, so if it will make taking care of her easier for the both of you, then consider every option you have. People may think that giving my daughter a partial is wrong, but I don't want someone to take advantage of her and her end up pregnant. I'm thinking of the future, because like you, I will run myself into the ground before someone else cares for her!

Melissa - posted on 04/28/2011

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Ok, I'm going to step into controversial territory here but have any of you heard of removing the ovaries to stop puberty all together? A few family members have brought this up to me because I am a single mother and caring for her when she is 30 is going to be incredibly difficult. She has spastic hemiparesis, so not only can she not help me with her own care but it is often a struggle to get her to bend her legs and into a sitting position. Its like she is fighting back when she isn't. She simply has no control over that.

I already have joint problems and was told several years ago that I will need at least one weight bearing joint replaced by the time I am 40 because of the wear and tear on my body. Those family members think it would be best if she didn't grow into a woman so that I can continue to care for her instead of putting her into a group home. You see, my daughter was abused as an infant so I am FIERCELY overprotective of her. I'll end up running myself into the ground before I let someone else care for her without me there.

I honestly can't wrap my mind around removing her ovaries and stopping her maturation but I know that it has been done before. What do you ladies think of that? Does that seem ludicrous to you or perhaps like something someone should consider?

Vicki - posted on 04/28/2011

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Heather,
Our daughter does have some cramps now with her periods and she too isn't always verbal with telling us what hurts (high tolerance for pain). She knows her older sisters go through periods too so it doesn't seem to bother her too badly. You are correct that no parent wishes for their child to go through any pain, discomfort, surgery or anything that we see as hurtful but in reality we all deal with unpleasantness at one time or another. Our daughter has been battling so much since before she was born that I hate to say it but it is just a part of her life. She just had thyroid ablation done earlier this week and is home recovering nicely. One day at a time always works the best and when we face difficult paths it is always good to have friends to lean on! Wishing you all the best!

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