YIKES -Explaining Puberty!!!

Every parent at some point has to face the realization that their little John or Suzie is growing up. That there will be a time that comes when explaining “the birds and the birds” has to be done -aka puberty. Especially in this fast paced and sexually explict world that we are in with the internet, tv, movies, music, magazines, and the knowledge that kids have at a much younger age. 

As hard as it is to explain to a neurotypical child about puberty, parents of children with special needs face a much harder time depending on the level of the child both mentally and physically.

I often see other parents on facebook asking for advice on this same subject. I once was one of those parents myself. 

This is mainly about the experiences I have had with my daughter. There are links below to provide additional information for both girls and boys.

In the past, 4 years I have had to experience K going through puberty and all that comes with it. I was terrified of the thought of K going through puberty. I was in denial and really did not want to think about the inevitable.

But as nature will always have its way, K started getting arm pit hair, pubic hair, leg hair, and developing  breasts. 
Denial was not an option…

With the help of her school and having certian things written in her IEP, at the age of 8, we started to explain puberty to K:

  1. Practice with wearing pads at home and in school for 4 days out of the month (this was written into her IEP)
  2. Used social stories with pictures to explain the changes both at home and school
  3. The school had a “Period Club” for all the girls around 9 years to explain the changes.
  4. Having K try different types of pafs to find the one she prefers.

This was done over the course of 2 years. K was one of the girls who got their period early. She was 1o. She dealt with it ok. There was an increase in aggressive behavior which resulted in having K placed on birth control to help with the mood swings. K was 11. ***The treatment of birth control may not be right for every girl***

K’s  independent hygiene skills and fine motor skills still need a lot of assistance. She needs help removing the pads and placing new ones on. Also with disposal of the pads. K prefers the Always ultra thin foam pads. She needs help with shaving her arm pits. Also K needs to be monitored in the shower and may need help washing her hair and body. K needs help brushing her teeth correctly.

Now after reading – there are things I wish I could have done differently. And some things that I will try to include going foward with K:

  1. The idea of using the brown lunch bags with the new pad inside. This will help her have a place to dispose of the used pad where ever she may be.
  2. The idea of having a special set of underwear for K. This underware will have an outline of where the pad be placed. So this way K will know the proper placement for the pad.
  3. The idea of using a timer to have check the pad every 2 hours. So this way she can change it herself and get use to checking it on a regular basis. (I would check it when she went to the bathroom or every few hours)
  4. Inforce all of the above once a month, every month regardless if she has her period or not. Again to also get  K use to doing this.

Helpful websites and blogs for girls:

  1. How to help girls with Autism through puberty (Provides information on reading materials and helpful hints to teach your daughter).
  2. Raising childern with Autism: Periods (This has great ideas for a social story to help explain the menstruation).
  3. Puberty in Girls: Physical Changes and Menstruation (Lots of great tips)

Helpful websites and blogs for both boys and girls:

  1. Teens with ASD and puberty
  2. Children with autism spectrum disorder: getting ready for puberty
  3. How To Discuss Puberty with Your Child who has Special Needs

    Helpful websites and blogs regarding boys:

    1. Puberty in Boys: From Physical Changes to Masturbation
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    Elopement and Wandering 

    Elopement and wandering … running away, bolting, whatever you want to call it can at best be a worrisome and stressful event, at worst a parent’s nightmare come true. 

    K had elopement issues at an early age. She would refuse to hold hands outside and try to run away to some place unknown to us adults. Inside she would open windows, doors, the sliding door and run out. In the apartment, we used the hotel sliding lock on the front door, special window locks, and another lock on the sliding door. She was catchable during those moments when she was 2 to 5 years old. Even she was fast!

    The biggest scare, I had was back in 2011. K and I had moved back to our home state. K was 6 at the time, we had spent the night at a friend’s house like we have done many times before. In the middle of the night, K got up and got out the house. She undid all the locks on the door and got out! We all woke up shortly after and noticd K was gone from the condo!

    Molly, Josh and I ran outside to start looking for her. Behind Molly’s condo is a steep hill going into the woods with a stream somewhere at the bottom. Around the condo there was a broken basement window. We started to yell out K’s name but go no respone.

    Understand, that at 6 years old, K could only say a few words, not answer questions, would not say her name, repeat certian scripted lines from songs in her sing songy voice. She had no sense of danger and no understanding of what to do in a situation like this.

    My heart about stopped and I was on the verge of calling the cops and freaking out…

    Then I heard sirens! My heart fell into my stomach and I, on instinct, ran towards the sound. Probaly about 1/4 mile down the road, I saw K sitting on the hood of some lady’s car!!! 

    Thank the heavens above and the angels watching over K that day! Some kind lady saw her walking down the road and stopped. This lady, who I never found out her name, called the cops. The cops were there. 

    I explained to the officers that K has Autism. That we stayed over at a friend’s house and this happened. They took my information but nothing ever came of it. No one showed up at my door from any agency, charges were never pressed or anything of that nature. 

    Now I did set in montion certian changes to prevent this from happening. Any house that K visited alot like Molly’s, her Grandfather’s, or where we lived door alarms were installed at all the houses. My house and my father’s there were window locks install, double key dead bolt locks, and the door alarms. I even want has far as to buy a harness from Custom made harnesses by Elaine. 

    During the day, the harness was used when we went out to prevent K from bolting into any given direction. At night, I used the harness to prevent another night time escape. K would wear the harness and she would be tethered to my waist at a very short length. And this is how we slept – especially when we went to Molly’s or on the family vacation to the mountains where the area was surround by a lake. 

    This kept K safe both during the day and at night. The above picture is of her at a charity walk that we did down by the shore wearing the hearness. 

    I did look into the gps bracelet for her, however it turned out to be to costly. The county I lived in did have a program, but the cost per month and having to go there once a month to change the battery did not work with my work schedule. They were only open Monday – Friday and closed at 4pm. 

    Now at age 11, the elopement factor is not done as often and K can go long periods without having an episode. But it is still there lingering in hind sight. She has done it over the years and has done it in school. She has run out of the classroom, tried to get out of a moving vehicle  (yay for child safety locks!), run back to a store, run away from a therapist or myself with that weird, giggly smile she gets when she wants to get into trouble on purpose – this she has done sporadically over the last few years. So all one can do is be mindful that IT can happen and not to get too relaxed about it.

    Below are some links providing information about stories of kids eloping both with happy and fatal endings. There is also resouce information to help parents and links for Project Livesaver and Custom Harnesses by Elaine.

    Autism: Wandering a hazard for more than 1/3 of Kids

    Stories just in July 2016 with the children found alive:

    Boy with Autism Found Wondering Around

    Mom charged, Child with Autism Wanders Away

    Boy with Autism wanders away from daycare

    Stories with not so happy endings:

    Two cases of young boys with Autism who wandered away and has fatally endings 

    Avonte Oquendo – wandered from school, fatal ending

    Missing boy with Autism drowns

    Resources:

    AWAARE

    Autism Speaks: Wandering Resources for Parents and First Responders

    Project Livesaver

    The link for below picture is not attached. This is a PDF from the National Center for Missing and Exploited Children which needs to be downloaded inorder to view. Google the “Missing  Childern with Special Needs by National Center for Missing and Exploited Children”to read the helpful information.

    Article on GPS device to help bring wandering people home

    Custom made harnesses by Elaine 

    The Magic of Awareness 


    The meaning of  awareness:

    That magical moment when the light goes on and possibly there may be a life changing moment on the horizon!!! 

    Especially when it happens to a child with like K!

    I don’t know if it is a degree of maturity, the birth control pills, the right mix of her medications, the effect of her school, the influence of people at her group home, the almost nonexistenting and sporadic services of the current ABA company, or a little bit of the above.

    Whatever it is …. I will take it and happy to take it! 

    K (as previous post will show) has always had a history of violent aggressive behaviors and self injurious behaviors. 

    But this past weekend gives me a small glimmer of hope with the new awareness that K seems to slowly be obtaining.

    I was told this about K:

    Instead of kicking the wall or doing any number of her aggressive behaviors, K has been asking this?

    K: “Kick wall. What happens if K kicks wall?”

    Then K will be told she will hurt her foot, loose x,y, and z, and that my fiance will be called.

    K: “NOoooooOoooooOo!”

    Then she can be redirected to something else to do.

    Or other times this is self directed, for example:

    K: “Kick wall. What happen when K kick wall?”

    K: “K hurt foot. K loose ambulance. Call J.”

    K: “Bad idea.”

    Then she proceeds to do something else that is appropriate.

    So to me this is HUGE! This new awareness K has regarding the negative behaviors! 

    We can only wait and see where this postive insight will take her!!!

    Hormones!!!! 

    K has had her menses (her period) since July 2015 at the tender age of 10. She had it once, and then periodically has had it in the last few months.

    She does not get it consistently becuase of age and being on Risperdal. Risperdal may surpress a female’s menses as a side effect of the medication – just FYI. 

    K was recently place on birth control in May 2016 at my request. It is a low dosage of estrogen. 

    She has had severe aggressive in the forms of self injurious behaviors, destroying property, and being violent to other people. Apart of this, I have to contribute to those lovely hormones that puberty causes to go all out of wack. We have figured the majority of the aggression is a week before she would get her cycle. It is much like sereve PMS but comes out in behaviors.

    It took me a good year to find an gynecologist that would see my daughter at a young age. Her pediatrician would not prescribed the birth control, he said he would only renew the prescription.

    Anyway, K has been on the birth control sine May. Her behavior has vastly improved since being on this medication. K still has her moments, but is able to be redirected. On occasion she may need to be restained but very rarely now. 

    So, I am going to keep my fingers crossed and hope that this continues to work for her.

    K was wonderful over 4th of July. Very calm and happy – she really had a good time!

    K playing in the pool – practicing her water dance!
    K learning how to play Bocce Ball with the family!

    A few weekends ago, we went picking produce. K was not to into doing that. But she was fine – there were no dread meltdowns and she was able to wait to get ice cream!!!

    So yes I will take any and all improvements!