Anyone have a special needs teenager who has their moon?

[Kwan*Yin]

I have a teen aged daughter that I have to help her with her bathroom needs. I have to clean her up after each bathroom trip and it is alot of work. So I know that her moon cycle is going to start any time now. I'm curious how this is all going to go. With what I already have to do I can not imagine this too. Plus at school? Will I have to go to her school frequently to clean her up? The teachers and aides there do not help with this and at this point if my daughter has an accident she comes home smelling awful because she isn't capable of cleaning herself well. If anyone else has this issue i'm looking for pointers and ideas that would be great! Thanks.

[Linda on the move]

I'm not in this situation, but wanted to send you good vibes. Talk to your ob/gyn and see if there is anything they could do to make her periods minimal to non-existent that wouldn't have major side effects.

[RiverTam]

I'd seriously consider putting her on hormonal birth control. Depo shots stop periods for many girls. (It complete stopped my periods.) Some pills let you skip periods for 3 months straight.

[KCMichigan]

Originally Posted by RiverTam 

I'd seriously consider putting her on hormonal birth control. Depo shots stop periods for many girls. (It complete stopped my periods.) Some pills let you skip periods for 3 months straight.

I agree.

Also, why do the schools not help with her needs? I would request that it be put in writing- Student with Spec.Needs can have IEPs or 504s that allow for an adult in the school setting to help with basic hygiene needs (if you are in the US). I cant imagine a school letting a child/teen have serious personal hygiene concerns and not doing anything about it!

[Kwan*Yin]

I never considered stopping her cycle. That is an interesting concept. I have to admit as she enters the teen years, yet she has the mind of a toddler, I am very concerned about her sexuality and how this will all play out. I will speak to an OB about this. Thanks for the advice. There are several aides in her class but her teacher advised me against getting her own personal aide because she didn't want my daughter too dependent on someone. She thought it would inhibit her progress. But none of the aides are necessarily qualified or have background checks to be touching a teenaged girl in that area. Well maybe not touching but wiping/cleaning. Still.

[philomom]

There are pills now that let you have your period just four times a year. They offered it to my teen.

[askew]

A few of the moms on a list serve I belong to have stopped their daughter's cycle completely. Some used hormones, and a few actually gave their daughters hysterectomies. I can't imagine putting my child through surgery, but we are not even close to that kind of decision yet. Best of luck.

[PikkuMyy]

I think it's completely unacceptable for the school not to provide someone to make sure that she has proper bathroom hygiene. It's not healthy for her socially, mentally, or physically, and puts her at risk of infections.

I don't see any reason why you can't write into the 504 or IEP that she needs assistance using the bathroom. There are many students with various health needs that don't need an individual aide for most of the day but who do need assistance using the bathroom (have CP, need a catheter, etc.) There must be someone at the school, such as the nurse, who is qualified, etc. to do this.

You can definitely look into forms of birth control, but I suggest first addressing the larger bathroom issue that will continue whether or not she gets her period regularly.

Also, I would consider a hysterectomy an extreme measure only to be considered when all other less intrusive measures have been tried. It causes a lot of physical and mental changes.

[KCMichigan]

Originally Posted by Kwan*Yin 

 But none of the aides are necessarily qualified or have background checks

Actually. I imagine that the aides in the class have been background checked considering to gain employment in the school. They also get personal hygiene training and 'lifting' training for children that are wheelchair bound. There are a number of disabilities at elementary to high school levels that would require an aide to assist or completely take care of hygiene and restroom needs.

Bathroom skills are not a typical concerns for teenage students with moderate to sever disabilities and can be included in 504 or IEPs.

Honestly, many of the aides may be parents themselves. 

I would be concerned if a student went 8 hours without proper bathroom care- the risk of infection is high, not to mention the social implications.

[Kwan*Yin]

Thanks everyone. I will talk with her teacher tomorrow. The accidents were horrible last week and some of that had to do with her regular teacher being on vacation for the last two weeks. Transitions are very difficult for her and she has more accidents. The aide's in my daughter's classroom are college students getting in their time for whatever teaching programs they are doing. No background checks are necessary until the point they are legally contracted with the school. I discussed this with the principal. There are different aides every semester. Some of the kids have their own personal aide's which is different. I'm just going to have to sit down with the teacher and see what we can come up. This year has been particularly difficult at school specifically and maybe it's the horomones?? Hard to say,

As far as a hysterectomy goes we aren't there yet. I watch over her closely when she is with me and when she is school she is being watched by a minimum of 2 aides at all times. Even birth control pills goes against what i'm comfortable with but in this case it seems like such an excellent idea. I had a friend who had a hysterectomy done with laser surgery and she was in pain for a day and that was it. So I think that will be something to keep in mind for later. I know I have the option of a group home for her when she's old enough but that isn't something that I would do. I am in a position to have her in my home for life and will support her however I can.

[RiverTam]

<i>I had a friend who had a hysterectomy done with laser surgery and she was in pain for a day and that was it. So I think that will be something to keep in mind for later. 

</i>

That sounds like an ablation. The doctor uses a laser to burn out the uterine lining in the womb.  It scars the inside of the uterus and an egg can't implant. They usually tie your tubes at the same time.  You keep the uterus and the ovaries, and you continue to cycle until menopause, but you can't get pregnant. 

I had it done two years ago. It wasn't painful and I had some bloody, watery discharge for a few days.  I haven't had a period since then. 

[anj_rn]

Most docs will either prescribe seasonale (pill that gives you 4 cycles a month), or Depo shots which can eliminate the cycle altogether.  There is also an in office abalation with concious sedation where the OB/GYN inserts a balloon through the cervix into the uterus and fills it with scalding water.  It burns the lining of the uterus, so no pregnancy, no cycle.  A couple of days of cramping, but no surgery.

The school is absolutely required to provide the assistance for sanitary needs for your child.  Including cleaning her up and changing her clothes after an accident.  Not only should the aides be trained, but the teachers and school nurses should be trained to assist with this.  I would suggest a squirt bottle (like the kind you use post partum) to bring to the school.  It can be filled with warm wated and used to clean her perineum while on her cycle without requiring lots of wiping.  The school should also let you send a pack of disposable pads so they can change them at school. 

[Eyelet]

I have sons, so no advice about moon care. However, my DS is 13 and also needs total assistance with toileting. I understand your hesitation for aides to help with your DD. In my DS IEP it's written that he has to have bathroom assistance. In my state, it's the law that toilet assistance has to be done by two staff members. One to assist, and one to "witness", so no child is ever alone in that situation. I also insisted that in his IEP it is written that the person assisting had to be of the same sex.