Discussing periods with my autistic daughter (schools, mentally, insurance, child) - - Page 2 - City-Data Forum

Taja · 05-05-2009, 12:01 PM

Okay, my daughter started and I just took her to the dr. today. They discouraged Depo. What am I supposed to do, pull her from school a week at a time? She is also moderately retarded (as well as autistic). She is quite functional but very echolalic. I'm afraid what I tell her will be repeated inappropriately at school. She doesn't even know she started. SOS! I cannot be the only Mom out there suffering through this. I guess they call it the curse for a reason...right at the start of summer!!! I will buy the book from Amazon. Taja

JustJulia · 05-06-2009, 06:11 PM

Taja, I'm sorry, I didn't see your post. My daughter is echolalic too and has very little sense of what is socially appropriate (boundaries, modesty, rudeness, etc.), so we worried about this too. That book I mentioned helped me broach the subject with her of who it's OK to talk about her periods with (i.e., mom, doctor, school nurse, teacher if she asks). The book is very simplistic and just says it's not OK to talk with boys or other kids at school about periods, pads, etc. We just read the book together ... I read it to her, and she reads it back to me with my help.

Her tendency to repeat stuff helped in this instance. I know echolalic kids often just repeat things, and not internalize or think about them, but repeating the messages in the book did help my daughter to remember. Who can we talk to about our periods? Mom, Dr. ____, Mrs. ____ , Mrs. _______. Do we talk to boys about periods? No, it's private (there's a whole section about "privacy"). Do we talk to other kids at school? No, it's private. Who can we tell? Can we tell the doctor? Yes ... and so on.

midwestmom · 05-09-2009, 11:08 AM

JustJulia,
I wanted to thank you for mentioning that book - it sounds like a good one!

We had to go over and over how periods are private, mainly in crowded stores and parking lots..
school wasn't too much of a problem. I know teachers and aides were great about those "reminders" for our echolalic dd.

I don't know how unusual it is, but she's been in programs since she was 3 and the first male teacher she had was her senior year. It's been good for female issues but I think it would have been better overall if she'd had a few other male teachers over the years.

On another note, we used to write little notes to cut down on the repetitious verbal part of her behaviors - "We already answered that question..what does your note say?" Her speech therapist suggested it and it was a great help. Typically she'd ask the same thing 30 or more times in a day and it cut it down to 4-5. Helped with her memory and independence because she could "remind" herself.

Bobbi B. · 12-16-2010, 10:26 PM

I am in the same boat! My daughter just turned 10 and already has started growing breast. I have been worried for a few years about it and got the same thing from her doctors "We will cross that bridge when we get there". She had the same issues with toilet habits, not potty train till 8 and still needs help wiping at times. I will admit I am worried. My daughter is home schooled, so I am hoping that will make things a little easier on, not only her, but me too. I have thought the same things about birth control and her understanding what sex is and I honestly don't know if she will understand it any time soon. It is all very scary for us as women not to know how to help our daughters through the normal things in life and I am glad there is a place where we can talk about it. THANK YOU for the advise!
I was just wondering Taja, how are things going for her now?

mommieto3 · 01-27-2011, 08:05 AM

I have a 9yr old daughter who at 17 months old started having such severe seizures it took four hospitals, numerous doctors, and two months to get them under control. She has not been diagnosed with a anything, but has some signs of autism. She has been non-verbal since the seizures started. She understands everything she is told or asked to do, but cannot communicate what she wants. She also has the mind setting of about a 3-4yr old. I am having a very difficult time getting er potty trained! She wear panties all day at school and goes potty just fine, but as soon as she gets home no matter how long we make her sit on the potty, she will hold it or wait until our back is turned and put on a pull-up to have a BM. It is getting very frustrating. I feel I am not doing something right to help her understand. Anyways, I too am so worried when she starts her period! I too have talked to my husband about birth control, but do not want to take that away from her. I wish she would be able to comprehend the book you have recommended, but I know she will not. I am so lost and worried about her daily.

AnywhereElse · 02-01-2011, 06:35 AM

I have a son with Down syndrome which, of course, I realize is totally different but I got the most wonderful book geared toward Down syndrome which I believe could be a help to all with "challenges": Teaching Children with Down Syndrome about Their Bodies, Boundaries and Sexuality. I was really surprised when I worked for a brief time with teens with developmental disabilities just how together they could be. My son functions at about the 40 month level and is 24 years old. He has good social skills and understands appropriate behavior in public. Because of "events" at the day center, I have removed him but I know now that he fought what was going on there - he knows what is acceptable and not acceptable even at his functioning level with little communication skills. They can surprise you in a good way. Funny, I thought boys would be so much safer but that turned out to be not true at all. Anymore, you can't educate your kids enough about life!

JustJulia · 03-20-2011, 09:26 PM

Oh wow, I forgot this thread was here! It's been a while since I posted it. We did end up putting her on Depo because getting her to take care of herself in that way was too challenging. She just doesn't care. Her doctor didn't have a problem with it, and just makes all our lives easier for now.

jasper12 · 03-21-2011, 07:10 AM

Yes, that is the best solution for everyone. When I taught school, that was the most difficult aspect of my job, because some parents would "step up" and help their daughters out, others just did not want to deal with the whole thing...it became more of an issue when parents did not even tell their daughters about products available, like tampons, for young women who were blind, but not MR. Was that my respsonsibility, or was I going out of my area of instruction?

Bobbi B. · 07-05-2011, 11:13 AM

Quote:

Originally Posted by Bobbi B.

I am in the same boat! My daughter just turned 10 and already has started growing breast. I have been worried for a few years about it and got the same thing from her doctors "We will cross that bridge when we get there". She had the same issues with toilet habits, not potty train till 8 and still needs help wiping at times. I will admit I am worried. My daughter is home schooled, so I am hoping that will make things a little easier on, not only her, but me too. I have thought the same things about birth control and her understanding what sex is and I honestly don't know if she will understand it any time soon. It is all very scary for us as women not to know how to help our daughters through the normal things in life and I am glad there is a place where we can talk about it. THANK YOU for the advise!
I was just wondering Taja, how are things going for her now?

I found this link and thought it might help someone: Girls growing up on the autism ... - Google Books

marydavis · 10-03-2011, 06:01 PM

new here..I just found you all by searching on bing..because I am in desperate need of support, insight and any helpful info. you all may have for me..My daughter just turned 9 on Friday the 30th of Sept., so she is 9 years and 3 days old. We were in getting her ready for bed..usual routine..and she was getting clean undies on and asked me...mom, what's this? and I looked and had to leave the room and cry hard for about 5 min. before I could collect myself enough to go through the motions with her..now she has seen me plenty of times and been in the bathroom with me when I have had my period..and has seen the motions that I go through and asked questions..and I have explained the best I could at the time..but she is very much like JustJulia's daughter in that you can explain things to her..but it is just not that easy...I obviously will be calling her pediatrician in the morning and making an appt. and I knew this day would come eventually and it has been something that I have thought about very often for the last year but being overwhelmed is a damn understatement...she is 9 with the mentality of a 4/5 year old..my head is spinning...and I am not trying to be selfish..but it is me that she depends on and I need to get through this and do it right for her most importantly..I feel like a blubbering idiot right now..she's my baby...and to top it all off..she is high functioning and I just dont have a damn clue!! I know that things will be ok..and we will get through this..and all I am hoping for right now..is that it stays calm enough each month to where it is managable for both of us..most importantly her...I am a bit frantic..but not frantic enough to where I am not rational..I am just the mom of a 9 year old girl with PDD-NOS who has started her period..and I am sure there are plenty that will agree with me on the fear level that is instilled on us as parents for our daughters..they have so much that they work on everyday as it is to function and be social and learn in school,etc...this just seems like so much for my little girl...I want to just be able to take it all away for her, and make things as easy as possible..but I know that is not possible..therefore..I need to be strong for both of us...and that is going to be so hard..but after I cry a few more times..I should be almost to the point to where I will be able to kick in for both of us and give some of my strength to her for this situation..I can hope anyways...I love her soo much..