I have a 20-year old sister who has never spoken, and never will. AMA.

Hi baileymedline72. I work in the field of neuroscience testing. If you are interested, I can give you the name of a test that you guys can do to test her verbal comprehension.

that sounds awesome! i haven't heard of anything like that, but I would love to learn more!

Hi, sorry for the late response. The test probes peoples understanding of language by using the N400 semantic incongruity paradigm. Here's how it works and why it is used: If you have a person that is not verbal and does not move or is incapable of communicating or cooperating for some reason , then you use this test. You place an EEG cap on the person and you record their reactions to stimuli. Stimuli consist of many sentences presented through headphones one word at a time. The last word of the sentence will either be a semantic fit, or misfit. For example
every
morning
I
drink
a
cup
of
shoes
A person who has normal language comprehension will produce an negative electrical waveform 400 milliseconds after the last word. this is known as the N400 mismatch waveform. The waveform is produce ONLY if the sentence is semantically in-congruent. If there the waveform is present it indicates 100% that the person has language comprehension. I don't know how much detail you want me to go into. Let me know if you have any questions or need anything else.

that sounds unbelievable. i think that's definetly something worth looking into/trying. thanks for the info!

My sister has Rett Syndrome too! She's 23 this year, and was diagnosed in the early 90s.

Here's a question: do you ever want to slap the shit out of the people that call it a "blessing?" Maybe it's how they cope, I just always want to smack them. It's not a blessing; it's a tragedy. No sense in pretending it isn't.

Edit: does she get seizures? My sister has grand maul seizures daily. I never knew if it was a Rett thing or if its just something that she has in addition to Rett.

Edit 2: does your sister love music too? My sister goes insane for music and she walks around with a toy up against her ear that blares music.

oh man I'm so glad you saw this! as for your question...YES! i've heard that comment countless times and it makes me crazy every time! i get that maybe it's what they have to tell themselves to make themselves feel better, but i don't like it one bit. i think it's a terrible disorder that takes so much from our sisters, and you can see how frustrated they are in their eyes. i don't think there is any blessing about it.

she doesn't get seizures. i'm so sorry to hear your sister suffers from them, I understand a lot of girls too. i think it is definitely more common than not in Rett girls.

saying my sister loves music is a drastic understatement. she lives for it. as i said in one of these other posts, she is all about her man Bruno Mars, but she has very eclectic music taste. she loves everything from old school jazz to one direction. haha. it makes her so happy, and that makes me happy. she has her ipod and ipad, both HEAVILY loaded with her music. that's awesome that your sister rocks out too! id love to hear more about her/you. :) you both seem great!

That's crazy that your sister has the musical aspect too! PM me anytime if you want to commiserate and exchange some stories/thoughts!

And thanks for doing the AMA...most people try to correct me and say "you mean Tourette Syndrome?" Rett is definitely not widely known about :/

i definitely will! you too!

and yeah i hear that all the time, it does get quite frustrating!

I just stumbled upon this thread and thought I'd chime in. I work with children and adults with ASD and Rett syndrome - I'm a music therapist. :) We use music as a fun modality to work on non-musical stuff like communication, social skills, motor coordination. Playing instruments and singing can open up all kinds of doors, even for those who are nonverbal (I currently work with a 14 yr old boy who is nonverbal, but sings along with me and is learning functional phrases to use in everyday life.) This type of therapy might be really accessible for your siblings since they love music already and would have tons of fun while learning important skills to be successful with others!

Edit: I hate autocorrect sometimes...

yeah it's definetly something i am going to look into. it seems really interesting and helpful for her. fyi, it's rett, not rhett's. (sorry. just a big no-no within the community)

Dang, I should've checked my post before I submitted. Stupid autocorrect... I usually catch that stuff, oops!

it's all good :) no worries!

The context I've heard it used from people with disabled siblings/children/relatives is that the person, regardless of flaws, is still a person worth loving and caring for and can make your day, like when OP turns on Bruno Mars and they get to experience the joy of making her smile again.

Also heard it used in the sense that the tragedy put their own life in perspective and showed them how trivial their problems were, generally making them a much more compassionate and happy person.

Fuck, I kind of teared up reading that.

I dunno. It varies person to person and a lot has to do with ones own circumstances, so I'm not discounting that's how some people take it. I don't see how it makes other problems seem trivial except by creating a huge one. It's an extremely tough life caring for someone who needs every minute of your day and its heartbreaking for me at least to think about what life my sister should have had. There's no sense in obsessing about what should have been, but it IS a tragedy to me. There is a whole spectrum of human experience that she will never be able to participate in. I comfort myself with the knowledge that she's unaware of it. I would be a monster to not feel like its a tragedy; I would have traded my sense of fulfillment taking care of her for her ability to live a normal life any minute.

For clarification, I don't live with her anymore. She's with her father.

i agree with both of you, actually. i think that by knowing i can turn bruno on and make her smile, everything else in my life at the moment, all my problems, become insignificant. At the same time, I know there are so many things she wont ever get to experience, and that's when i feel a great deal of sadness. I look at her and think all the things she will be missing, and that sucks. But then I look at how well she is doing, and it gives me hope.

I agree. I have a sister with a variety of issues. Doctors decided on a mix of CP and likely an genetic disorder about 10 years ago, but it's always been up in the air. But Rett isn't far off in some of her symptoms..

I think the entire thing has probably made my family better, more compassionate people. I would not be who I am today without her. But if I could go back in time and take it all back, and have her be 'typical?'

Hell yes I would.

i tell people these exact words all the time. I truly believe I am the person I am today because of her. She taught me to be patient and understanding, and that everyone is different and special in their own way. However, if I could trade that for a chance for her to have a "typical", successful life, I would in a heartbeat. That doesn't mean I don't absolutely adore her for who she is :)

I read this entire thread and just wanted to let you know how much of a wonderful person I think you are. Taking care of someone like that requires a lot of inner strength. I've raised 2 siblings since their birth (the youngest and I being 20 years apart) and that was without them having any sort of handicap. It was terribly difficult and exhausting, so it only makes me believe just how awesome you are. Keep up the amazing work and pass along all of our love and hugs to her and your family. (: Also, for you hug

Thanks so much! That means so much. Wow more power to you for going through something rough and coming out strong! You're words truly mean the world to me! You're a great person!

Does she show any signs of amusement or emotion? I'm also sorry to hear of this, I wish the best for her.

She actually does. While she can't communicate by speaking (or sign language), there are certain things that make her so happy and things that really piss her off. Music is something that will brighten her mood instantly. If it's a song or artist she likes, you will know it. She gets this huge smile and giggles, and it's quite adorable. She is a huge, and I mean HUGE fan of Bruno Mars. She could be in the worst mood ever, and you put on something of his, and she is happy with life. Also, when we are out in public and people stare, you can really see that she is mad and hurt. She has this look on her face that breaks my heart, and she just doesn't understand why she is so different. Thank you for your well wishes, i'll pass it on. She's a great listener :)

We should organize a petition for Bruno mars to come meet your sister. That would be awesome if it happened

Link to his forum

Everyone send him links to this AMA!

i love this. you guys are amazing. :)

I can see that ending badly. What if she lacks the mental capacity to tell the difference between listening to and meeting him. Although I suppose celebrity endorsements are a great way to raise awareness

exactly :) even if she doesn't realize who she is "hanging out with", getting the words Rett Syndrome into his vocab couldn't hurt.

I am kind of a mean person. I don't really like people all that much. I don't empathize with them. Lately my philosophy has been live and let die.

Things like this really tug at my heart strings and remind me that I do still have positive emotion buried down there somewhere. I wish you and your sister the absolute best.

<3. i'm glad i could help dig that positive emotion out.

What does she think of Skrillex?

I second this notion.

never tried it, definitely going to haha. she will probably love it.

I absolutely adore the way you talk about her and your attitude towards all of this. Your love, support and care is amazing. :)

Thank you so much :) I truly admire her strength an I love her to death. It's hard not to :)

I've always considered Rett Syndrome to be a funny thing, possibly because I used to know nothing about it despite attending school and family events with children with Rett, or growing up with my sister who was born with Rett.

You should read more about Rett Syndrome here: http://www.ninds.nih.gov/disorders/rett/detail_rett.htm)

We've only discovered the main Rett Syndrome gene (MECP2) in 1999 and in 2006 six scientists confirmed that this disorder can affect boys as well. (http://www.sciencedaily.com/releases/2006/08/060812090802.htm)

Rett Syndrome can affect boys. It is a very rare case but it is possible. My sister went to a school for mentally and physically handicapped children and my parents were able to meet another couple who had two children with Rett Syndrome, a boy and a girl. My parents were also part of the French Rett Syndrome Association (I grew up in France) and over the years I met a lot of children suffering from this disease, a majority of whom were girls but there was a (very) small handful of boys.

Not much is known about Rett Syndrome and it seems to be hidden in the background of our everyday life. My sister died when she was 14, I 11. For the first 11 years of my life I was immersed in a culture where I was able to meet families with mentally and physically handicapped children, families who also had a child who suffered from Rett Syndrome. I thought this was normal, that these children were often seen. Then when my sister died, my parents left the association and kept in contact with a few friends.

In the last ten years, the only people I've seen with Rett Syndrome are my parent's friend's children. I haven't heard anyone talk about the disease nor read anything about it since then, unless I initiate the conversation about my sister first. No one seems to know about this neurodevelopmental disease and it's nice to see other people sharing their stories. :)

Can you give me an anecdote, a memory, a funny story that you have of you and your sister?

td;lr We should talk about Rett Syndrome!

well then, i'm glad you read this! thank you for pointing out the fact that it can indeed affect boys. I have so much I want to ask you! I'm so sorry to hear about your sister, that is completely heartbreaking. Was it related to Rett? Did she have a particularly hard time with the disorder? You don't have to answer if it is too hard, I completely understand. While growing up with a sister like this is difficult, it's also really awesome that you're parents were so immersed in the culture, thus opening you up to meeting different people with Rett.

um, I have so many stories of her and I, and just her, that's it's hard to pick one. so I won't. haha. i'll give you my TWO all time favorite Taylor stories. 1 is funny, and 1 I think is just cute.

1) Growing up, my family always went out to dinner every Sunday night, and we always went to the diner. Growing up in Jersey there are a ton of diners, and it's a great place for Taylor. It's loud, so she can make as much noise as she wants and noone stares at her. Food's pretty awesome too. So one night we were at diner, and my dad had just finished feeding her. He was starting to eat his meal, when Taylor pushed herself away from the table and GOT UP! now while she walks independently, we had never seen her do anything like this before, and we didn't know what to do. so we decided to see where she ended up, what she was getting up to do. she ended up going to the table next to us, sitting down at their table, and looked at the woman there like, "come on. feed me." hahahaha. luckily, they were awesome about it and thought it was great. we brought her back to our table and got her dessert so she wouldn't run away again.

2) when I was in high school, i had a really nasty bought with ovarian cysts. i had to have surgery and my recovery was about 6 weeks. I was in a lot of pain and hadn't seen much of my sister, because she doesn't usually walk down to the end of the hall my room is in. One day, my mom brought her in and laid her down with me and she willingly stayed all day! it was amazing. it's like she could tell i needed her company. i just told her stories and she looked at me like she really understood. it was one of the best days ever.

anyway, we should definitely keep in touch!

(Wow, I thought you were a boy until I read this. Oops, sorry!) Also, being from Jersey, I didn't get that your sister's name is Taylor, and I totally thought you meant diners were awesome for Taylor Ham, and I had to read your post like three times before I understood that that was her name and you were not talking about sandwich meat. Ooops...

All that aside, I think your love for your sister is absolutely beautiful, and I have many well wishes and prayers for you and her and your whole family <3

haha that's pretty funny, actually. Diners are indeed AWESOME for Taylor Ham, and also for my sister. Win/win! Thank you so much. :) thanks for responding!

This might seem like a strange question, but physically what sort of shape are they in? I have a brother who has an odd shape for his condition, but not unheard of, and its always interesting for me to run into people with similar situations. (He has variation of autism, but its a little hard to explain really)

So do u mean like physical shape or condition? If to mean her physical shape she is 5'6 and 200 lbs. big girl, but not really fat. She is just extremely dense. I mean she loves food but we try to control it haha. Let me know if I didn't answer what you're asking!

Does she ever have any behavioral issues? My sister is 22, about 5'3" and probably only 120 pounds of pure muscle. Yet sometimes I can't control her when she get upset/angry. (Could I overpower her? Probably, but at the risk of causing injury..no dice) Honestly, we've been so grateful she stopped growing early.

We actually have had little to no behavioral issues with her. Occasionally she will get so frustrated with not being able to communicate effectively that she will yell and try to bite herself, but i'd say that happens twice a year at most. Sorry to hear you're experiencing behavioral issues with your sister. I hope it all works out. I'm here if you need to talk/vent anything :)

Does she have any way to communicate with you? Even If it's just if she's hungry or something.

A lot of times it is a guessing game with her, as far as trying to figure out what she needs/wants. She makes this groaning noise whenever she wants something, but then we have to guess what it is. It could range from being hungry, needing to be changed (she is not toilet trained), or even boredom. So my parents and i will usually go through the list, and it's a process of elimination. A lot of times, if it's hunger, she will bite her hand. So i guess that's her way of letting us know something other than her hand would be nice to eat. :) thanks for the question!

You said, " if she is bored", what does she do for entertainment? (also thanks for answering my question!)

no problem! that's what i am here for! haha well, she goes to her school everyday from 9 to 3, so by the time she gets home she is pretty tired. and 3 days during the week she has therapists come to the house to work with her. so most of her boredom occurs during the weekend (we think). she has been going horseback riding with my dad every saturday for the past 15 years, and she loves it. other than that, she is very into tv and music. she has a couple movies (high school musical, hairspray) that she has watched 67890 times haha. she loves them to death and doesn't get sick of them! so those are a go to. she also really loves the beatles, bruno mars and bob marley. so she has an ipod that is loaded with that stuff and a pretty nice stereo. She will also meander the house and pop into our rooms and "say hi" but i know she gets bored and i feel bad. we take her on drives cause she loves being in the car, but sometime i feel like i should do more.

Seems to me like you do a lot already! So she show's visible pleasure in those activities?

oh yeah. she could go from miserable to downright beside herself with happiness by listening to her music/watching her shows. like i said, we do try to mix it up so she doesn't just sit around all day, but hey, she likes what she likes :)

Not to be confused with Rhett's Syndrome, sufferer's of which are frankly unable to give a damn.

http://i.imgur.com/b6hyFCK.jpg

haha that's pretty awesome

No questions. Just my heart and a virtual hug goes out to you. My daughter who is now 7 has a similar situation in that she has a developmental delay. She will most likely stay at the mental age of a toddler as she ages. So I know what you and your family are going through -- therapy, long term care, and all. Despite all the shortcomings, there is some good, happiness, and joy that can come out of it. Wishing your sister, you and your family all the best.

Thank you for your kind words! I wish you the best if luck with your daughter and if you need anything don't hesitate to ask!

What kind of therapy does she go through? What does her program look like?

My brother is about her age and he also can't communicate/do anything. This was due to a heart problem though that resulted in some brain damage. He was fine before it happened, which makes it difficult to deal with, knowing that he wasn't always like that. It's good to see another family that really cares. I believe that's what they need - showing them that the people around them care for them and won't give up.

Thanks for doing this ama!

oh man, how old is your son? i'm so sorry to hear that.

she has speech, occupational, and psychical therapy 6 times a week between school and privately at home. the speech therapy mainly focuses on ways to get her to communicate (ipad mainly) that don't require speech. her therapists at school and home spend a lot of time teaching her ways to use the ipad to communicate, but they also focus on teaching her some basic skills. recently, she mastered the art of bringing a fork to her mouth and drinking from a straw, stuff like this. i wish you the best of luck with your son. give him an epic hug for me. let me know if there's any more info I can give you to help :)

Cool! He's turning 20 this year. :) He undergoes a lot of therapy as well (all those three). We have therapists come here everyday, sometimes multiple times in a day. He also goes to the hospital for more intensive physical therapy. He was an athlete back then and so his body's still in shape.

We've got some one-way drinking straws, which really help. He's still trying to learn, but at least it's not as frustrating as the normal straws. You probably already know about these, but I'm putting this here for anyone that might be able to use them. The ones we got came with a no-spill cup that had a hole for the straws. Makes things easier, especially for drinking on the go.

What iPad applications do you use? We've been meaning to explore using iPads or computers to help facilitate communication. We haven't really explored it though. We've heard about a head-mounted mouse that can be used if the hands still can't be used reliably. He has limited control over his hands/body but his head control is pretty good (if not normal already). He likes looking around a lot and he moves his head to look whenever someone enters his room or talks to him.

yeah those one way drinking straws are phenomenal. Proloquo2Go is the app we use mainly on her ipad. it was a little pricey, because it's more of a program than an app, but it quickly paid for itself because she uses it everyday. it brings up options that she can pick either by looking at it (eye gaze) or touching it. so this would definitely be something you may wanna look into. we also downloaded a bunch of "fun" apps on her ipad, like firework displays and music videos. then we use it as a reward system for when she does something in school/therapy. that and food are two big motivators for her. my kinda kid. haha. the head mounted mouse sounds really awesome, but i don't have too much experience with it. id love to try it though.

so, if you don't mind me asking, you said this happened because of a heart problem? i've never heard of anything like that, it sounds very sad.

Thanks for the app suggestion. How does it do the eye gaze detection? Via camera? He likes music too! And funny vids. Sometimes, it's eerie when he's watching a comedy and he laughs at the jokes - you can somehow feel that he understands them since he laughs appropriately to the jokes (without cues from other people laughing).

Sorry I wasn't able to explain. He had an undiagnosed heart problem and this led to him having something like a heart attack. It took some time before he was finally revived (20-30 mins), which is actually a miracle when I think about it. This led to some brain damage. He was in a medically-induced coma for a time and it took a lot of time for him to get to where he is now (it's been nearly 2 years already). The doctors say it can really take time to recover. We can't know for sure if he'll recover fully or to what extent he'll recover.He's been slowly but steadily progressing (he used to have a tube in his stomach for feeding but he can now be fed just about anything).

well, i'm glad to hear that he's been progressing, regardless of the pace. progress is progress :) and yeah, the ipad has a built in webcam and you just set it up, and it tracks her eyes. it took a while for her to be able to figure out that she was in control, but once she did she loved it. that's awesome that he seems to have a great sense of humor and loves funny videos. my sister will do that too sometimes. we will all be watching a funny movie and she will just randomly laugh, and it really makes me happy because it makes me realize just how "there" she is sometimes.

Yeah, those moments are priceless :)

very true :) best part of my day when that happens :) if you ever need anything, don't hesitate to ask!

Will do :D

:)

I'm curious as to how much you believe she comprehends when you speak to her. As a big fan of audiobooks i would wonder how she would respond to something descriptive like this, even if it were something really simple?

that's actually a great thought. i'm a huge reader, so i can't believe i haven't thought of that! i think i will definitely check it out and try to find one that isn't too complex, but still kinda age appropriate, so she doesn't feel like a baby. as far as what she comprehends, i fully believe she understands almost everything we say to her. there are times when she will do something silly, i'll say "you're such a dork," and she'll smile. or there have been times when my mom would tell an embarrassing story about her, and she would look sort of betrayed. (mom never did it again after). there's also a couple songs out there (mostly beatles), that actually make her cry. so we wonder if the words of the songs get to her or something. i think her issue is that if i was to say, "taylor, come here," she would probably understand, but may not have the ability to follow the command.

In that case I recommend something like Harry potter read by Stephen Fry. All i can do is try to imagine myself in that situation, and while its impossible to know on what level she comprehends things it would be cool if she were somehow able to escape to some imaginary worlds like we do when we read. They have got me though many a long car journey at least!

oh that sounds amazing! i am a big harry potter fan, so hopefully she will too! i'd love to be able to give that to her! thanks so much! i'll let you know how it goes!

I have a son who is also unable to communicate. He is diagnosed with Lissencephaly where his brain is smooth and he is missing various parts of his brain. His vocal cords are also paralyzed and just a lot of issues including seizures. He is 18 months old but functions around that of a 3 month old and there is no knowing how well he will advance, probably not much further, or how long he will live; as people with his condition tend to not live long. No real questions for you just a hug and high five for dealing with issues like this so well.

well here's a hug right back at you. I'm very sorry to hear about your son. I hope the doctos find out more about what's affecting him and hopefully that gives you a better prognosis. You seem to be doing a wonderful job, and he is so lucky to have you as a mom.

Given the relationship that you two share, I assume it would be hard for you to leave her with your parents, or place her into a care home. Because of this, is there increasing thought in your mind that you will take care of her yourself? Once you have a place of your own that is.

Oh yes. I think about it all the time. It would indeed kill me to be away from her, but in the end I just want what's best for her. I'm not crazy about putting her in a care home, and id love to have her with me. I just want to make sure I'm secure enough and can help take proper care of her.

I can see you care about her very much, and it's amazing to see. I myself am an only child, and I often wonder what it'd be like to have a brother or sister, I'm glad you're considering staying by her side, despite the work and effort it may take from your part. At least with you taking care of her yourself, you needn't worry about her living conditions when she's under your own roof.

exactly, and that's the main reason I am interested in doing it, despite the hard work it would entail. she's worth it to me.

What's the long-term plan for her? Will your parent take care of her for the foreseeable future or will she be going into a special home?

Well, she ages out of the school she is in when she is 22, so she has a little less than 2 more years there. After that, she will live with my parents in their house in new jersey along with her one on one aid who is there 24/7. my parents realize that they won't be able to do this for too long because they will become too old to properly take car of her. (it's a more than one person job, so the aid couldn't do it alone). after that, probably in ten years or so), she will go to a special home. we have our concerns and apprehensions about that because of the horror stories, but my grandfather left her a bunch of money for finding the best home there is. Both my sister and I have expressed interest in having her live with us, but we need to see where we end up because we don't want to take her far away from my parents.

bravo grandfather

Yeah he is a lifesaver!

thanks for doing this ama. does she communicate at all? I mean, like if you show her a bunch of pictures of things she may potentially want, will she point at it or gesture toward it in any way? best of luck with all of this btw, it sounds like you have a positive attitude in a situation that could get almost anyone down.

she definetly wouldn't point, simply because she lacks the motor skills to do so. However, sometimes if she wants something really bad she will smack a picture of it to get her point across. this is actually something that all of her therapists are actively working with her on. they have pictures of everything, from family members to food items. and they hold up 2 pictures and she either hits it or stares at it for a significant amount of time. shes getting the hang of it, but its something that we continue to work with. even if it's jut the kind of cereal she's having in the morning, we try to let her decide. and thanks :) i honestly don't see the point in being negative, because her disorder is not going anywhere. she is my best friend in the entire world, and as long as she is happy and comfortable, so am i :)

Have your family ever thought of sending her to camp? For a couple years, I went to this camp where I would be paired up with individuals who were mentally and/or physically disabled. They provided us training, and had the ability to meet a wide variety of needs, including your sisters.

Yeah actually she has been to camp! She goes for 6 weeks in the summer, but it's a little different than you explained. She's not paired up with anyone, but she has her aide and then she has a small group of like 4 other kids, most of who she knows from school. They spend half the day in the pool ( which she adores! She could live in the pool hahha). And the other half is based on her abilities, so for her it's a lot of "dancing" and picnicking :) she loves it!

Jotoni???

huh??

Oh, I saw you were in NJ, and I was curious if she'd gone to Camp Jotoni. Guess not, hah.

haha nope.

I just read through your AmA and can I just say I am left heartbroken, touched, inspired and more informed all at once (I had never heard of Rett before). Congratulations from the bottom of my heart for being such an amazing, loving sister and person and thank you for taking the time to do this.

Please have a virtual hug from me to both you and Taylor! Please take care and I wish you and your family all the best.

P.s. I love the story of how she laid with you the entire day when you were bedridden after your operation. That made my day :)

thank you so much! i love hearing that people learned something about Rett, because it is a disorder that people don't generally know about. thanks for the virtual hug! haha i'll send it right on to her :) You're kind words really mean a lot, so thank you for taking the time to respond!

and yeah, that's one of my favorite stories of her ever. i'm glad it made you smile :)

She is a special person need to be loved.

very much so, and she is SO loved. Not just by me, but our entire family is very supportive, as are the people at her school. She's one of those people with an infectious laugh, so she's not someone easily forgotten once you meet her :)

Did you ever have a time in your life (adolesence, perhaps?) when you resented the amount of care and attention she needs?

What are your goals for yourself---career, partner, family, etc?

i remember when I was about 14, and she as about 10. I remember being annoyed that when we went out, it was all about Taylor. Being older now, I completely understand why. However, at the time, I couldn't get over it. i mean, I loved her to death. I just was a stupid teenager and thought it should all be about me. Other than that though, I don't think so. We have another sister who is gonna be 16 tomorrow, and she is just as unbelievable with Taylor. She blows my mind, because she puts her before anything. Noone is asking her to, but there has been many a friday night that she stayed home to hang with Taylor. We really lucked out.

as for my goals- it's all finally starting to fall into place. I am almost done with my first year of grad school in PA for Occupational Therapy, which is what I have always wanted to do. I also think that's because of my sister, because I want to help kids like her. I live in PA now with my girlfriend, who I have been with for just about 4 years. We do want a family, but I need to finish school first :) It's really hard to be away from my sister for months at a time, but it makes going home and visiting that much more exciting. My girlfriend and I are going to NJ next weekend for a visit, and I can't wait to see Taylor. Her and my gf hit it off like no other, sometime i worry I'm the third wheel. Haha. Sorry, you got a bit of an earful there :)

What are your parents like? I have this image of them as these also-great people who just have raised three incredible kids. It sounds like what you felt as a teengaer was completely normal, but that your parents have always inspired (rather than forced) you and your youngest sister to do the right and loving thing. Is that accurate?

it is very accurate! my parents are two of the most amazing people ever. they did a phenomenal job raising all three of us. They raised me and my youngest sister to love with compassion and patience, and they taught taylor that she is perfect the way she is. We are the way we are because of them. I am indeed very lucky. Thank you!

Thanks for the Iama and my question is does your sister watch tv? If she does what does she enjoy?

she does :) most of the shows she likes are not entirely age appropriate. she likes a lot of tv shows aimed towards a much younger crowd. (disney jr, nickelodeon, that kinda stuff). she also watches hairspray and high school musical at least twice a week!

Aw thats cute.

thanks :)

Of course.

thanks

Hey, I don't know if you're still answering questions or not, but I saw where you mentioned several times that your sister loves music. I was wondering, though if she has ever been involved in any music/art therapy? I was going to ask if she enjoyed doing things like playing with paint, but I saw where you said that she had no use of her hands.

I ask because I'm considering becoming an art therapist. One of my goals in life is to open an art studio where kids with special needs can come for free and just have some unrestricted time to play around with art supplies.

PS, you sound like a really awesome sister!

i will be answering questions until there are no more to answer :) she hasn't been really involved in music/art therapy, because she wants to listen to her music (Bruno Mars, that kinda stuff), and the therapists we found weren't willing to use that music. However, my parents are still actively looking for new things, so I will definitely bring this up to them! I mean, she does have music and art class twice a week at school, but it's not really therapy. But her teachers have told us she seems to enjoy it. I'll definetly suggest it again. Thanks for the idea! I hope you reach the goal! That seems like an amazing idea and you would help/change so many peoples lives! Thanks again!

I am a 27-year-old wife and mom of two toddling girls (love them an incredible amount!) Before having children I taught children who are blind for three years. My education/teaching background working with children with varying special needs and my current job of staying at home with our children makes me wonder if adopting a child with special needs would be something we could do. I want to make sure my biological children are safe at home, so I would not want to adopt a child who is at all violent. I guess I say all of this to ask your advice as a sister to a special girl with special needs. How did she shape you into the woman you are today? Would you consider adopting a child with special needs in the future? Goodness, any advice is appreciated.

I honestly think that having my sister around greatly impacted who I grew up to be. She taught me patience and understanding more than anyone else could. She made me realize the appropriate way to act around children and adults with special needs. (don't stare, make sure i smile and talk to them). I actually have considered adopting a child with special needs, because I feel as though I have the experience, and I hate the idea that there are a ton of children with special needs that few people want to adopt. It's something i am definetly going to look into when I am ready to start a family. My mom has actually expressed interest in adopting a child with special needs. She obviously might not do it right now, but I think once my sister is in a residential facility, and my other sister has gone off to college, I think it's something my parents have been seriously talking about!

Let me know if you have any other questions :) have fun with your little girls, they sound wonderful! (as do you)!

I just found this AMA, as I browse this subreddit pretty rarely. But even if you never actually read this, I just want to express how inspiring this whole story is. My elementary school was divided into a special needs school as well as a regular ed elementary school. For the most part, the kids (most of whom had Downs Syndrome) absolutely loved school. But so many of them seemed to have pretty weak support systems at home. I remember one girl in particular who would always be hanging around after school late because she hated to leave. I'd stick around with her because my parents got home late. She was such a nice girl and I still think about her often. I'm glad to hear that your sister has such a loving family to go home to. And your outlook is amazing. Thanks for making my day with your sister's story. I wish you and your entire family the best.

that's awesome that you were such a good friend to that girl! thanks!!!!

I just googled and read up on Rett because I never have heard of it. Are you older than your sister? When did your family first sense something wasn't right? Can she do anything by herself or does she require 24/7 help? Thanks for doing this!

I'm so glad this encouraged you to look it up! While debilitating, it really is a fascinating disorder. Taylor (my sister), is 20. I am 24, and we have another sister who is 16. My mom says that she knew something was up as soon as Taylor was born, and I don't doubt that. As far as I can remember, she was just a cute giggly baby and an even cuter toddler. My parents said that when she was about 16 months old, she stopped wanting to crawl, talk, interact, any of the typical things 16 month olds do. She was officially diagnosed around 2 1/2, which is good because a lot of times girls are misdiagnosed. Only girls get this, which is something that blows my mind. There really isn't much she can do independently, except walk around. Thankfully, she still walks, which is an ability a lot of girls lose. She can walk around and sit/lay down. But if she wants to watch tv or one of her movies, she relies completely on us.

Yes! You definitely raised some awareness over here. Thanks for your answers! I read about why boys don't get it, something to do with the chromosones stunting growth during pregnancy? Is her life expectancy in jeopardy because of this disease, or is this something you just live with?

yeah its a mutation of the x chromosome that causes the disorder, and since boys only have one x, if they were to get the disorder (which happens rarely), they don't really live too long. Months usually. As for her, she does have a typical life expectancy. A lot of times these girls have some complications from Rett Syndrome. Most of the other girls that I have met either have feeding tubes, daily seizures, or are stuck in a wheelchair. Some girls who have these issues may be looking at a lower life expectancy, but Taylor has none of these so she should be around for a long time!

Glad to hear that! Thanks for doing this and I wish the best to you and your family.

thanks a lot! let me know if you have anymore questions!

i just wanted to add something quick in regard to if she can do anything herself. while she is nowhere near able to feed herself, she recently became able to "help", if you will. if i were to stab her food with a fork, she is then able to hold the fork and put the food in her mouth. granted, she is stubborn sometimes, but she has recently become a pro. haha :)

ok so! you should cut her food, say chicken into pieces, and fork'em with plastic ones or those 2 sided tooth pick deals, then she could feed herself! that would be cool and she might feel umm.. whats the word, accomplished afterwords.

now i want costco samples, samples with toothpicks in them are awesome.

question! any fond childhood brother and sister moments you remember having? also if she needs help turning on her entertainment have you considered setting up something she could use to turn it on... like a computer with all her media on a playlist set to random? maybe give her a remote you could map shortcuts into to access said media?

just wondering cause that would be pretty sweet! i hooked up my ps3 controller to my computer and i mapped up the buttons to open things like music and movies set to random. A friend of mine modded a old dance dance revolution pad to work like a giant game pad so we could play mario bros. with are feet, so if you buy a pad that already hooks up to a computer you can map it so when she steps on different arrows it will turn on her media.

just suggestions, i think she would appreciate it and be curious enough to learn how it works with time... also you should play DDR with her

Oh man I love that feet pad idea! She walks a lot, and that would be interesting to see how she does with that! I actually loved all your ideas! Really awesome! I'm gonna try them all! Haha. We had tried hooking things to turn on when she pushes a giant switch and that was successful for a while but we have been having a hard time finding the switches, but this feet thing could solve it all! And I'm totally gonna do the toothpick thing because it would be good to fine tune her motor skills to pck it up (def will take a whole!) but it's a good goal. And I have tons of sister memories with her. She's my best friend and we have so many inside jokes that I know she understands. And she knows all my secrets about everything so all that leads to some epic memories. :)

thats cool, you should try it! now a days with the internet you can find all sorts of software to do all sorts of things, and cheap hardware to do it with. and tutorials on how to set things up on youtube.. just research research research!

my younger brother is my best friend too! he's an ass but so am i so it works well.

umm... theres new technology developing all the time, they actually have these things now you put on your head to control video games now... well thats what they want to do with it but i have seen more practical uses.. like automating a house or something, hopefull eventually it will be used for the right reasons, like helping people with limitations(lack of a better word) be more independent with certain everyday tasks, maybe to even be able to communicate with pre-set things... idk.. know i'm just thinking out loud!

good luck with everything and if you need any help finding resources let me know and i can try to point you in the right direction

Thank you So much! I may take you upon that about the resources! And yeah it's crazy how far technology has come! I'm so happy that there are things I didn't even realize could give her a better quality of life. Thank you SO MUCH!

welcome! when something catches my attention my gears start turning, i'm an idea guy! i hope you do and if it works in aiding her it would be nice to see it in action or to hear of the success

i will definitely keep you updated!! thank you so much again!

Awesome! Thanks for adding this. I really had never heard of this condition before this AMA. Best of luck!

thanks! glad i could help!

Is your sister on any medications? I read that there is no cure, though a few advances have been made. Thanks for doing this and all the best to your sister and your family.

Nope, the most medication she has ever taken is Tylenol. She's very healthy, considering. There's not too much out there to help the problems she does have. Thanks for the well wishes, and right back at you!

I read through most of your comments (Which answer anything I could have asked), so I just want to say that you're a great brother and keep on doing what you can. =)

haha, i'm actually her sister :) thanks so much for the encouragement though! if you think of anything else, I'll be here!

i do not mean this in any offensive way. i have a sibling with autism... i read this with such intrigue and hopelessness. do you ever think that she would be better off dead? would you agree that she will never be able to achieve any goals that a normal person does? do you think you would want to live as she does? ty.

i've thought about it countless times, about how she won't have the same goals as you or I would. I actually haven't thought she would be better off dead though. I don't take offense at all, I understand why you're asking. The thought just never entered my mind, really. I think that as long as we keep challenging her with attainable goals, goals that she can meet, she will have a good quality of life. Especially because she is surrounded by people who adore her. I don't think I would want to live as she does, but she didn't get to choose it either, ya know? It's hard.

Is this disorder by random or is it a genetic disorder?

How old was she at diagnosis?

How did your parents start to realize something was wrong?

Is the inability to use her hands typical of Rett?

Sorry for so many questions! I haven't heard of this disorder before.

haha no i love questions! that's why i did this!

1) she was about 2 years old when she was diagnosed, after about 6 months of actively searching for a diagnosis. 2) my mom claims she knew something was up when she was born. around 6 months old she started holding her breath for no reason, and that was a sign to my parents. also, when she as about 14 months she started exhibiting some ocd like behaviors, such as obsessively playing with her hair. this paired with the weird breathing and they just had a feeling. 3) and yes, it is typical of girls with Rett. Most of them do repetitive hand motions (clapping, wringing hands, biting), but other than that, very few of them have functional use. i mean, they can with a lot of therapy, but not one their own. :) ask me anything else that comes to mind!

Hi there! From what I've read, you're a great sister! My brother has been diagnosed with a slew of mental and behavioral disabilities. None which overlap with your sister, but they share a love of food and music that's hard to describe. My question is, how do you deal with bullying and uses of words like "retard?" Did your sister attend public school? And what does her future look like? Thanks for doing this AMA, even if you don't get around to answering these questions, this has been uplifting and a wonderful read.

almost nothing bothers me more than when people use words like "retard." to me, it is one of the most hurtful things to call someone. if i hear someone using the word I try to let them know what the word really means, and how much it hurts people. I tell them there are much better words to be used. She didn't go to public school, she went to a private school for children with special needs. She's 20, and she has been going there since she was 10, and we love it there. It'll be sad when she leaves.
Her future looks pretty good. When she ages out of her school in 2 years, it looks like she will continue extensive therapy at our house on a daily basis. My parents are currently looking at a whole bunch of residential facilites for her, so hopefully one of those will work out.

My sister is slightly mentally-retarded, autistic, and bi-polar with voice-hallucinations and depression. We adopted here from Bulgaria in 2004 (she was 6, I was 7) and we expected her to be neuro-typical I know it isn't the same, but I feel like I can relate a little to your situation. The stress on my family has been extreme many times (off medication my sister is violent and suicidal), but obviously I love her. The love isn't the same as it would be if she was like every other 16 y/o kid. Much of my family resents her sometimes, but love is love. I think you're one of the few people who can get what I'm trying to say. She's messed up our lives, no need to be PC, but we love her.

Will your sister ever live in a group home? We're planning that for my sister when she's 21 or 22. I'm nervous about it for a whole bunch of reasons. Very sensitive question, but do you have a plan for when your parents are gone? My parents have tried to make very clear that she won't be my responsibility.. But I worry.

I hope you yourself are okay. I know how rough it can be. Shoot me a message anytime if you feel like it. Also, I'm in Warren County.. Jersey diners are great. Are you north or south? ^{Wall of text. ....}

oh wow, it sure sounds like you guys have your hands full. I completely understand and get what you're trying to say. It's a crappy situation, but she's your sister and you love her. she will probably end up in a group home within the next couple of years. she ages out of her school in two years, and hopefully within a year of that we will have found a place we love for her. I am nervous about that too, because I have heard all of the horror stories and I hope we both find good places for our sisters. when my parents are gone, she will probably still have the group home. however, my grandfather left her a whole bunch of money to use towards her care and her life in general. So if this means that she can live with me but have a one on one aide 24/7, i would love to do that. that way i'll know she's safe and happy, but I can also live my life.

I am indeed okay. It's hard sometimes, but she is great girl and I love her. I'll definitely keep in touch....you do the same :)

p.s. we are central jersey. monmouth county :) great diners!

I've got friends in Red Bank; nice place. Wish you all the best :-).

i love it there! thanks! you too :)

Not to be invasive, but how old are you? You seem to be really responsible when it comes to taking care of your sister. :)

i am 24 :) thank you for that! i think having her as a sister has in a way made me grow up a little faster, but I don't mind that.

God you sound like an amazing brother and this is one of the best AMAs I have seen. Now, what do you do when people make fun of her? I hope it doesn't happen often.

well thank you, but I am indeed her sister, not her brother. I really appreciate that though, and I'm glad you liked this AMA. It's much more successful than I thought it would be!

you know, it's less the people directly making fun of her, and more of the staring. we will pass parents with their children, and the children stare. Then the parents come over and either stare also, or PULL the child away from my sister. Like, really? You think she's contagious or something? Usually when this happens, I either just walk away, or I go up to them. I'll say something like, "This is Taylor. She's 20, but she acts a little younger. She has something called Rett Syndrome, and if you'd like to learn about it, just ask. Please though, don't stare." Usually this puts a slight smile on her face because I know it hurts her when people stare.

I'll say something like, "This is Taylor. She's 20, but she acts a little younger. She has something called Rett Syndrome, and if you'd like to learn about it, just ask. Please though, don't stare." Usually this puts a slight smile on her face because I know it hurts her when people stare.

I adore you. I think you are the most awesome person in the entire world. Everything I've read so far has made me think that, but the part that I just quoted is the part that made tears come to my eyes.

You are a fierce young lady, in all of the nest ways. Your parents must be so proud of you.

oh wow, you definitely just made me tear up a bit. thank you SO much for what you said. i'd like to think i make my parents proud :) haha. it's funny, because people have been telling me this kinda stuff, and i really do appreciate it. I just, can't imagine it being any other way, you know? Like, I couldn't imagine not fully supporting her, or letting people stare at her like that. It would just feel so wrong. But again, I thank you :) it truly means a lot. I adore you too!! :)

I should also have mentioned that I have worked case management for DD adults. The stares are bad. In my case, all of my clients could talk, so it was also infuriating for me when people would ask me "What does she want to eat?" or something like that. On the other hand, the food service people and other customer service people who made a real effort to ask and understand the clients (even if I eventually had to translate) always earned a phone call from me to the store or restaurant manager, praising the employee.

that's awesome! i just don't understand how people could treat some of these people (kids and adults alike) with anything less than respect. Good for you! that's awesome that the employees who deserved it got praise, even though im sure they weren't expecting it!

Oh thanks and sorry for the gender mix up. I looked up the disease and people who have it look like normal. Once again you are a good sister and you really did set some awareness for this condition

thank you! that was my ultimate goal so hearing you say that makes me happy. yeah most of the girls who have it look pretty okay. some girls look more ill than others, but you wouldn't really know my sister was different if you saw her from a distance. it's when you try to talk to her and she doesn't respond that you realize something is up. haha :)

Not a question here but I give you and your family a lot of credit for dealing with this seemingly as well as you can!

thank you very much!

That sounds practically like not having a brain at all.

And as everything that makes us human is in our brains, our personalities, thoughts, etc.

I'm inclined to think that people without functional brains aren't really people, but just failed attempts at people with the essential bit missing.

BUT, since she has the mental capacity of a 1 year old, this doesn't apply to her.

I've met one year olds who could talk and express themselves a fair bit.

Though from the description, I'm assuming she's not like an especially bright one year old.

i don't think that she is completely like a 1 year old, therefore more of "human" as you call it. she walks, and i fully believe she comprehends a lot more than a typical 1 year old.

This is a very heavy question, and in no way do i mean it to be insulting. Apologies in advance. Do you believe it would have been kinder had she not been born at all? From an outsiders perspective i would say yes, but as her sister you have so many other variables to consider. Again, apologies, and good luck.

i don't take it as an insulting question. I think it is a very interesting question. Kinder? Maybe. Easier? Definitely. However, I am so grateful that she was indeed born. I know that may seem selfish to some people, because this isn't the life she deserves. While I agree, I think by her being born she brought a lot of happiness to our family, and has brought us together. Perhaps it would have been kinder to her, because I can tell she gets so frustrated at her inability to communicate. I just can't imagine a life without her.

I'm about to graduate with my Bachelor's in Speech Pathology and have met and worked with a lot of amazing people with special needs (including my own younger brother who has Down Syndrome and LOVES music too!). Honestly, it's the people like you and your family that can make the hugest impact in their lives. Thank you so much for sharing all this information and raising awareness about Rett Syndrome and the kind of love these folks can share!

It's funny, right before I went off to college I almost changed to Speech, but decided Id be better with OT. However, I am so grateful for people like you out there! That's awesome that your brother loves music too! Maybe it's a more common thing than I thought within the special needs community! Yeah, i love knowing I have the potential to impact these kids and adults lives.

on a side note---how old is your brother? one of my sister's friends at school has Down Syndrome, Logan, and he is seriously one of my favorite people ever. He is the funniest, sweetest kid I have ever come across. He always greets my sister and I with a hug. Last year, I went to visit my sister at school as a surprise. I brought donuts, and Logan came running over and said, "Quick! It's an emergency! I need all the donuts!" I just about died. Anyway, thanks for responding!

That story about Logan is too cute! My younger brother Ryan is 11 and he's quite hilarious as well. The Make a Wish foundation gave us a trip to Disney World two years ago and he would not rest until we scoured the park to find his idol, Donald Duck.

I hope you enjoy OT! I absolutely fell in love with SLP. I look forward to working with people like you on multidisciplinary therapy in the future!

oh man that is adorable! i'm so happy he got to meet his idol! (nice taste, too), Donald rocks! I love Make a Wish. They gave my sister an amazing entertainment system a couple years ago. (tv, stereo, blu ray). They are a great organization! I already know I will love OT! I love my classes and I can't wait to do this forever! I hope I get to work with people like you! Please do keep in touch,you seem like an incredible person to talk to!

I also became an OT due to having a sibling with a disability, my sister has Spina Bifida. I mostly work with children with autism, so I have a lot of friends in the "autism community" who I love and respect dearly. With that being said, I get very upset when I see those memes on Facebook saying that children with autism don't need a cure, they need acceptance. I agree that they need acceptance, but damn, if there was a cure for Spina Bifida my sister and I would be the first in line! Cheers to you for doing this AMA and being an amazing sister:)

thanks so much! that's awesome that you became an OT because of your sister. you sound like a great sister to have :) omg i know exactly what you're talking about with those things on facebook! they offend me so much. Like you said, we love them without a cure, but with a cure would be amazing! it would help both of our sisters so much! i want to thank you personally for working with these children that need our help and love. any wise words or anything for a soon to be OT would be amazing! thanks again!

Make sure you get varied fieldwork experience, it will help you when you sit for your exam. Do any and every training offered to you, even if it's specific to teachers. Once you have some experience, supervise OT students, they can keep you up to date on what's being taught in school as curriculum evolves. I'm sure you'll be amazing, as family members we have an enormous capacity for empathy and understanding.

thank you so much! and i will definitely do that!

Define "spread awareness." How are you helping anything by severely complicating your life? This is genuine question.

In a perfect world, I would like people to know Rett Syndrome like they know other disorders, such as Down Syndrome, etc. I think the more people know, they more they can do to help. Even if it means just smiling to someone different, instead of staring. I don't, and I have never, thought of this as severely complicating my life. Sure, it's difficult and not ideal, but what choice do i have? If i don't talk about it, my sister and others will think its something not worth talking about. I think that by speaking out about it and trying to educate people, I am helping make our lives easier, not harder.

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why? because she is nonverbal?

What is the point in her going to school?

Her school is not typical school. She doesn't learn anything you and I learned in school. It's basically just back I back therapy. Teachers work with her on using he hands to the best of her ability, and fine tuning other motor skills. (Drinking though a straw for instance). Also, we like that she gets to spend the day with kids like herself :)

Have you heard of marjuana? Give it to her to smoke. It will cure her.

haha well it's funny you say that because both of my parents are fans. I don't quite know how well she would take it, and it makes me nervous, god forbid she didn't like how it made her feel.