What You Don’t Know

I read this a while ago but it still resonates with me. When I read this post, I still just want to reach through the computer screen and give the writer a hug. because it reminds me of my child., the child that was out of step with everyone else, including the disability world.

It is lonely when you don’t fit.

If I were to meet this writer, they would see support and understanding in my eyes.

Hopefully, their angst is less now and they are well.

What You Don’t Know About That Wild, Unruly Child 


If our life were an AAC game show

If our life were a game show, it would go something like this:

Word of the day Monday. Every time you tap the AAC word of the day (I give her a hint by posting the written word on a door, then she is to find it on her talker) we all yell hurray just like PeeWee Herman! She loves cause and effect. 

Traveling Tuesday.Our best conversations are while we are in the car. No distractions. We’ve got nothing but time to talk. We don’t even need a destination!

New-word Wednesday. A day to add a new vocabulary word.

Two-word Thursday. Must say two words together. Jess is brilliant at interjecting the exact word to interject into a conversation that sums up her thoughts, especially when people talk faster than she can respond. However, when it is just us, she is borderline lazy.

Fill in the blank or Fringe word Friday, . Fill in the last word of a sentence. This can be serious or silly. Silly is more of an icebreaker and she tends to expand what she wants to say. School never gave Jess “homework”, however, that doesn’t mean I can’t.

Secret Saturday. It’s a secret. Even I haven’t figured out the game for the day. I’m open to suggestions…

Short Story Sunday. Sum up the week in a short story. This is a way to model without pressure. Jess often begins this with “guess what” which leads to “and then what happened”.

By the end of the week, I say in my best game show announcer voice,

“Jessie, what have you won?”  (To the tune of the Prices Right)

“You have won a bigger vocabulary! Because you are more interesting people will want to talk to you. You are a winner (actually she is just fortunate) because 9 out of 10 people that are non-verbal don’t have access to a speech AAC system”. In reality, the percentages probably aren’t this high. 

This may all sound silly but talking isn’t always fun for Jess. Of course, these are our games and you can make up your own.

Either conversation moves too quickly, or we fall into using the same script trap. It’s like my asking my husband, “how was your day?”  It’s just too mundane and predictable. This is one of the reasons Jess liked SFY. She wanted fringe words at her fingertips. Without easy access, her old AAC device became an expensive doorstop. The words she had been seeking were the ones no one thought she needed. We don’t want her to be an AAC casualty.

Who knew?

If you ask her, she did.

If minds are not kept moving, then they stay on idle. If you are idle too long, you may need a kickstart. When it comes to talking, we need to engage


Review: mini iPad cases

I like how the label “This iPad is my Voice” is readable to people that see her using her Talker” Gives them time to process.

This is our Goldilocks story regarding protective iPad cases, except our story, has a happy ending.

Over the years, Jess has used several different cases for her Talker.

The iAdapter case looks industrial is built like a tank and is heavy.  It had a built-in stand and carrying strap, as well as, a built-in speaker which is helpful in loud classrooms.  Within a year, the carrying strap broke where it attached to the case. I will say their Customer service was excellent, but this case was too bulky and too expensive, and Jess needed the carry strap (helps prevent being left behind).

The Lifeproof case was more affordable and sturdy, however, it had a crappy carrying strap that either unthreaded or broke. Didn’t last. Note, there’s nothing wrong with the case itself, it just didn’t suit our purposes.

Out of desperation, I sewed a bag that enveloped the Lifeproof case. Jess needed to be able to carry her device. Wearing it prevents her from leaving it behind 99% of the time. (Yes, I repeated myself for emphasis.) This worked “okay” but was not a long-term solution.

We now have an Otterbox. First, I bought the carrying strap directly through the company, which we used with the Lifeproof case. I quickly realized we needed the Otterbox case for the carrying straps to hold on securely (the Otterbox is designed so the straps don’t slip off). The utility straps have a pouch. When attached a certain way, it doubles as a stand.

When considering the carrying strap for her Talker, I spoke with Otterbox directly. They have excellent customer service. The main office is in Colorado. Apparently, they have Otters!* Not sure if they help with the product testing but they sure are cute. I want one!

Upon realizing we needed the case, again I called the company. They only had black cases and have discontinued the colors (argh). They suggested I try Amazon. Sure enough, Amazon had a purple case and it was priced well.

Last night, the husband set up Jess’s new purple case (we prefer a color over black because it stands out and is easier to find). Jess’s Talker is labeled “This iPad is my voice…if found please return to…” 

As soon as Jess saw her new purple pad, she said “mine!”

The end

*the Otters are only 90 minutes north of Castle Rock. Might need to add this to the     “sites to see list” when I visit west.

New year, let go of the old

There’s a trick to re-arranging furniture. The room needs to be emptied so you can have a blank slate. You can’t visualize a different floor plan when the old one is still in place. This allows you to have a fresh perspective.

I’m applying this concept to a few things. It’s time to revamp.

All these years, I’ve set time aside to model, or I have practiced on my own while Jess was in earshot. I’m realizing I should be using the talker all the time when speaking with her (Instead of checking the history to see her usage, I’ll be using the history feature to make sure my modeling time increases). Not convenient but it does put Jess and me on equal footing. She isn’t getting much support for her device outside the home (that’s the one downside to aging out of school) and she doesn’t have anyone in her social circle that uses a Talker either. Jess prefers to be succinct. The outside world isn’t going to take the time to follow her flow of thinking, so she needs to expand her thoughts and the only way to do that use her Talker.

This isn’t the only change for this New Year. I’ve fallen into the trap of taking the path of least resistance. It’s easier to do things myself and it’s more work asking Jess to help, or anyone for that matter. Even though I have, I don’t like making a career out of housework.  I like to get the jobs done quickly.  We’ve watched enough movies where the rich girls suddenly have to provide for themselves. It’s time for life to imitate art. Jess can do more for herself than I’ve let her. I’m sure this is a control thing but this post isn’t about me…lol

I’ve been witnessing Jess attempt things that had made her self-conscience. Up until recently, she’s needed a lot of cajoling. It probably doesn’t help to realize the words I say the most have been, “hurry up, let’s go, now, schnell’. Instead, I should be saying, “you can do this, I’ll wait, thank you for helping”!  

On New Year’s Day, we were watching the Mummer’s Parade. Some of the participants were well choreographed, however, the ones that looked like a group of friend’s (or should I say drunks) running around being silly were the ones who caught Jess’s attention. Maybe it’s because they made it look easy, or maybe because they were willing to make fools of themselves (I say that with love), it was enough to make Jess attempt to follow their dance moves. This is huge! Girl, if you can dance, then it’s not a stretch to ask you to make a bed!. It’s time for me to pass the baton. I’ve cleared the room, you are in control, you can do this!


*this has been implemented these last few days as has been successful!

Christmas gifts…

First of all, our needs are simple and our wants are few.

Second, we don’t want anything, we only think we do.

For years I fretted about purchasing the perfect gift until I realized, there is no such thing! As my mother said, “it’s the thought that counts”.  She’s right, but honestly “the thought” doesn’t come out of nowhere, it emanates from listening. People will tell you everything you need to know if you give them time. Really, the best gift is giving someone your full attention (and for Jessie,,. modeling language is #1).

She found the dog ornament as soon as she walked in the door.

This year, I wrapped gifts in front of Jess so there wouldn’t be any mystery. She did attempt to peek at one, but quickly realized it wasn’t something that interested her. She left a trail of unwrapped paper. Someday she will learn to be a sleuth.

Up until now, no present had been safe. It’s an Angel thing. Nothing more exasperating than finding Jess opening gifts, especially ones not meant for her. It isn’t the mess that upsets me, it’s because I hate to wrap, and especially hate to re-wrap!  So far, Jess has controlled her curiosity. I don’t know why I didn’t think of this sooner? I classify reaching a milestone as a gift.

When it comes to taking information in, Jess doesn’t have a filter. Like a thief, she cases a room. While in this process, it may appear that she’s overwhelmed and distracted but really she is memorizing every item. Once this is achieved she settles in.

Several days after we decorated our tree, a friend gave me an ornament. As soon as Jess returned home, she immediately walked up to the tree and touched it. Jess has the ability to find anything new within moments (this is why I’m concerned about putting gifts under the tree that were wrapped by others). When I misplace my glasses or keys, I can count on Jess to find them, however, sometimes I hide things from her and can’t find them myself, like her iPad. Last week she couldn’t help herself from watching E.T. It’s the only thing that is 86‘d from her movie list. Upon hearing the music, Jess whimpers and will cry. This has been going on for years…sigh… After being warned, she lost her viewing privileges. It was the only way to break the obsessive cycle. The iPad is so well hidden, now it is lost.

We did get an unexpected big present early this month. After running errands one morning, I returned home hours later to find the dishwasher running (this reminds me of a phone prank but I’m afraid many readers are too young to know the joke). The odd thing was when I powered it off, it didn’t shut down, had to flip the breaker. We now tease Jess that she got a new dishwasher for Christmas so she won’t have to do dishes! When you are happy about an appliance for a gift, it means you have crossed over to being a grown-up.

My parents gave me money for a washing machine when I was in my 20’s. It was used and it was hooked up outside (this is possible when living in a tropical climate). The WM’s name was Willy, the Wonder Washer. I was thrilled not to have to go to a laundromat. Jess’s DW is named May, as in May-tag a long, the quietest DW in the east! Okay, so a DW isn’t a simple gift. I’m not sure if it’s a need or a want, however, we do appreciate it being a time saver and working on life skills.

Some of the best presents have been cards delivered, unexpected phone calls and finding cookies at our door. It really isn’t about the gift, but the mystery of what it could be. Maybe this is why Jess is excited about a wrapped gift or prefers going out on adventures. It’s the anticipation of the unknown that is thrilling to her. Gifts are hard to find but time I have plenty.

Merry Christmas, Happy Holidays and wishing for Peace on Earth for the New Year!

PS- feeling grateful for all that we have.

Knowing the context

Sometimes, it’s a mystery what Jess is trying to tell me. Yesterday, she bounded through the door, tapped her Talker and said,

“Police car, visited, carnival, pizza”.  I said, “sounds like you had an interesting day”!

Did you see a police car when you were having pizza? As for “carnival”, she did come home wearing Mardi Gras beads so, it’s anyone’s guess. Regardless, Jess was excited to talk to me, it all came out at once. Then she ended our conversation with “ha ha ha” and off she went with Roxy.

Jess’s comments may seem random but this is only because I don’t know what the context was. It made sense to her when she said it but it isn’t as easily understood if you weren’t part of the conversation. How many times have you walked up to people and didn’t follow what they were talking about until they brought you up to speed? It’s no different with Jess.

In the mornings, I try to have AAC modeling time. Recently, as soon as Jess sees me get my Talker, she leaves the room. Funny, I have the effect on people. I share a home with non-talkers…sigh…but…when they want something…they’re in my face and they won’t shut up!

This really is no surprise. People talk when it’s important to them. Reminds me of the joke about a boy who didn’t talk. Years later, he spoke his first words, the mother asked why he hadn’t talked for all these years? and he responded, “because up until now everything had been satisfactory”. (If you watch the video, there’s one comment that annoys me. Because he doesn’t talk, they think he’s “stupid” their words.  Seriously? These aren’t mutually exclusive. Just because someone is not talking doesn’t mean they aren’t intelligent. It’s the same erroneous logic speaking louder to a deaf person. SMH)

Maybe life is too easy for Jess? Maybe I need to leave some things unfinished so she has something to complain about? Hmmm, I could get the husband talking more using this logic but I don’t need to go borrowing trouble. He already wonders what I do all day.

If Jess doesn’t clear her words on her Talker, I can see what she said, or I can go into the history feature which tells me everything, as well as when she said it.

The best ways to get Jess to start monologuing though is to talk about what interests her. Once the pump is primed, the skies the limit!

“So, Jessie, where did you get those beads“?  She’s a straight arrow so I’m pretty sure all she did was smile to earn them.

Frustration; it’s why I blog.

When I started writing, three and a half years ago, there weren’t many blogs about young adults with Angelman Syndrome. It seemed once your child aged out of school, they might as well have dropped off the face of the planet. I wanted to know, what happens next? So, I started writing about Jess, an older Angel, hoping that something I said would help another parent. By sharing our journey, the mistakes, the lessons, and the success, maybe, just maybe someone else would benefit. In our own way, we have been trying to pave a way.

At one time, there was little expectation for the Down Syndrome community. However, the parents pushed and questioned what they had been told was possible. By presuming competence and raising expectations, the perception with regards to abilities morphed into “anything is possible”. I believe the Angelman Community is following a similar path.

When Jess was finally given the correct diagnosis (at 13), she was taken off the educational track and the focus was on self-help skills. This was done with my knowledge, however, I was naive. I didn’t realize why the change until years later. I didn’t realize that the diagnosis caused the shift. I dumbly followed schools lead believing they had her best interest at heart.

Because communication is the foundation for learning, my main focus for this blog has been about AAC. These are the bullet points that you need to know:

  1. if you child isn’t able to communicate, you can ask the school for help, but most likely, you will need to research AAC apps and devices yourself. Be aware that SLP’s are not created equal and are not required to take courses in Augmentative and Alternative Communication. They learn after they graduate, on the job and many do this on their own time. Where once speech was about articulation, there’s a growing need for SLP’s to be versed in AAC technology.
  2. When asking for supports from school, put it in writing. They will kindly blow smoke up your butt making you believe action is taking place when it is not. Requests do not exist unless it is in writing.
  3. AAC evals are only as good as the person giving the evaluation. A two-week trial isn’t enough to know if the AAC is a match.
  4. If you succeed in getting an AAC device, insist that it comes home with the child. Consider the device a voice prosthesis. A child wouldn’t leave a wheelchair at school and come home without one and they shouldn’t leave their voice at school either.
  5. Ask for training, not just at school, but in the home too. You need to know how to support your child. How can they be successful with an AAC app unless you are able to model comfortably? You can’t just hand the child a device and expect them to talk and they especially need someone to talk to.
  6. Get the whole family involved. Get your friends involved. Have your child out in the community using their Talker. Share with those that have never seen an AAC app in action so they understand this is your child’s voice and not a toy. Not only will this help your child but will make your child’s world bigger because it will encourage acceptance.
  7. There is no such thing as too old to learn.

For Jess to have a voice and the ability to speak for herself has been life-changing. If you are reading this and are waiting for school, do me a favor. Stop talking for an hour or two and try and communicate to your family. Or go out into the community and try and get help. You will learn quickly how difficult it is to not have a voice. So how old is your child that isn’t talking, seven, twelve, eighteen? Do you think you could be as patient without a voice as they are?  If they’re acting out, then they have given you their opinion. If they aren’t responding, maybe they have given up. Jess was a combination of both. We are trying to make up for that now. It’s the best we can do. The point is, don’t wait for school.

I guess I’m writing about this because I’m frustrated. It saddens me when I learn schools do not follow through and let time go by.  Either it is due to ignorance or because they want to save their district money. This I know because I’ve had many teachers pull me aside over the years saying such. They’d share with me their concerns and how the administration has constrained them. I realize our schools are overwhelmed, however, you have to be the squeaky wheel.

Unfortunately, I didn’t learn all of this until Jess was about to age out of school. I was ignorant about how technology was changing, however, the SFY app wasn’t available to Jess when she was eight (though that first device worked initially, it soon became apparent it didn’t meet her needs).  I shudder to think what Jess’s life would have been like if we hadn’t found her voice when she turned 21. Fortunately, no child should have to wait that long anymore.

PS- I forgot to mention, even though I was labeled “that over-involved parent” and teachers were “warned” about me (told to me recently by one of Jess’s teachers), I didn’t buck the system till her last two years of school. Up until then, I followed the school’s advice. In all transparency, I was that parent whose child didn’t have a (reliable) voice when she was 18.

Humor: it’s the Get-out-of-jail card

Yesterday, Jessie asked for ice cream. It was in the kitchen freezer in a yellow Shop-rite shopping bag. I thought if it was camoflauged she wouldn’t notice it when getting herself ice for water (which she does several times a day). I fooled no one. After getting permission, she quietly put the carten into her backpack. Was this for delayed gratification? Did she want to eat the ice cream later? I know she covets certain foods and will hold on to an apple, cookie and even M&M’s. It pleases her knowing it’s secretly in her possession. As I took the carton out of her backpack and helped her fix a bowl, I told her “ice cream waits for no one”.
I’m sure the snacking rules in our house encourage sneaky behavior. We walk a fine line. As far as Jess is concerned, she won’t get in trouble if Mom doesn’t find out. Unfortunately, she doesn’t have a governor when it comes to food. In all fairness, we are all are trying to be mindful of what we eat. Believe me, there are reasons for these rules:
Mom’s log…March 13, 2017
If you were at our house this afternoon, you would have heard this:
Me yelling…”Sure Mom’s cornbread is yummy, but if you are going to take it out of the fridge and proceed to eat it all, you’re gonna get in trouble.”
still yelling…”Yes, I’m mad. I’m mad. I’m mad. Just go. I don’t want you in the kitchen.”
A few minutes later, I found Jess in her room, wearing her St. Patty’s hat and these were the words on her Talker.

Oh, my goodness… using humor to get out of trouble?


Wee trouble?  No, you were in big trouble, 

Now, not so much because you made me laugh.

This is one of the main reasons I like having a high-tech AAC device. If she pointed to the words, no one would have seen them.  Even if Jess had cleared her words, I would have seen it in the history.

In all fairness, I don’t believe Jess witnesses ice cream melting. It just doesn’t last that long. Thank goodness she has learned how to use humor. It will take her far.

The Morning Dilemma

Ryan is sitting to the right of her. She didn’t want me to post his photo. I got the Oh Mother look when I asked…

It’s cold. To be correct, it’s colder than it has been. Jess waited outside for her ride only to learn that it was going to be late. When the van finally arrived, she had a choice where to sit. Before entering, Jess braced herself at the door. The brisk wind blowing through us made me impatient. I thought she was thinking about how to navigate the narrow walkway but realized the delay was because she wasn’t sure who she wanted to sit next to.

The back of the van has the best view and that is where Ryan was. I told Matt and James that this was not an easy decision for her and that she was lucky to spend the day with them. Matt is pretty quiet. James is the most chatty and always reminds Jess when she needs cash to spend. Alex was to be picked up next. Jess enjoys being with all the boys. It’s fun watching her navigate socially. Jess has always had boy-friends but as she’s gotten older, it’s a bit different. I know who she’s crushing on. She blushes when I talk about it… it’s okay Jess, you can tell your secrets when you are ready.

Brash confidence

As far as Jess is concerned, there are three things car rides are good for…getting from here to there, talking and waiving to boys. The first two are fine of course but I’m a little uncomfortable about Jessie waiving to people she doesn’t know.

I’ve seen this play before. When newly married, we were tooling down Interstate 505 in husband’s Supra. A young attractive woman, wearing a tank top, driving a red convertible, long, blonde curly hair flying in the wind, one hand on the wheel while waiving with the other at my husband. As she slowly passed, she gawked and mouthed “Hello”. Her brash confidence was comic like an old MTV video. She didn’t pay any mind that his passenger was another woman. After she sped off, I turned to husband and asked: “do you know her”?  He said matter-of-factly, “no but this happens all the time, it’s California”…

And here, now, my daughter is the confident, sassy girl. At least Jess’s actions are innocent and there’s no agenda. I’m not sure if it is the age or just a rite of passage that some people experience but she is feeling pretty good about herself. Other’s think this is amusing and say, “she’s a trip”.  Me, not so much.

A moment ago, Jess handed me her lip gloss. She wanted my help. Maybe she does have plans of her own? I’m afraid I’d better buckle my seatbelt. Blossoming self-awareness can be a bumpy road.