Never give up

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This girl never ceases to amaze me ! Everytime this disorder has me feeling defeated , she brings me back with something unexpected . She reminds me why I have to always keep pushing . Alyssa is non verbal . We were told she would never talk or be able to understand

. I vividly remember being told at an IEP meeting that she would never be able to understand any words without a cue or a picture . This was pretty much the consensus . I refused to believe it. I fought back the urge to lunge across the table . To scream how dare you say such things about my beautiful , intelligent , complicated daughter . I wanted to yell take it back . But I didn’t I sat there and fought back tears and said ; she is starting to understand some words which I thought was great . Familiar things I used the example

If how lately is we were getting ready to leave and I said we are going bye bye go get your shoes she would go get her shoes . Which I thought was great because up until now you would have to point or give her some kind of cue for her to be understand . I thought it showed potential . I will never forget this meeting ; the speech therapist looked at me with such pity and said that’s nice dear . She did not believe me at all .

This was one of many meetings I left in tears , feeling as my heart had been ripped out . But today she understands words , it is still limited but she can understand somethings , and today she ordered food at a restaurant. We were looking at the menu and I was showing her pictures of the food choices and we flipped to the back page and I asked her what do you want . Usually she just smiles and looks at me ( I’m sure in her head she’s like um hello chicken tenders like always ) but I am trying to challenge her . Of course we are at Friendlys and they have a picture of every food item but chicken tenders , so I am purposely showing pics of stuff I know she won’t pick . Well she points to a little picture of Sprite . I didn’t realize the beverage strip was there . I said what’s that she said sprite ( her version but close enough ) I was floored . So I look up a picture of chicken tenders and fries online and she nods her head yes and points . The waiter comes back over to take our order and we order for ourselves and her like usual . Then I look at her I don’t even know what made me do this and I said Alyssa what do you want to eat and I still had the pic on my phone and she said chicky ,( approximation ) and then I said what else tell him , and she said French fries , I could not believe it !

She ordered her first meal and I don’t care that she didn’t pronounce her words exactly !! She knew what I was asking and she answered . It was amazing . I am so proud of her . I know this may not sound huge but it is . In the autism world one little shift , one thing that could seem so minor is so big . This shows true progress , this shows more potential . I didn’t get to video her ordering because well I had no idea that was going to happen but I did get her saying sprite so I will post that . But you know I’m going out to eat again soon so I can . If she will do it again ?? I don’t know but I’m going to try .

#nevergiveup

#donttellmeshellneverunderstand

#ialwaysbelievedinherIalwayswill

French fries

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This is when we drove to Florida a few weeks ago . This is a very recent word that she has been able to say . She is doing so great it’s almost hard to believe it . She has severe apraxia which makes it extremely difficult to make sounds never mind words . Until very recently she has only been able to repeat sounds . For her to be able to retrieve the word and then be able to say it is a HUGE step . Also she just adores her sister . Anyone who thinks that people with autism can’t make emotional connections are wrong .

Non verbal

Non Verbal or now I suppose they want us to say non speaking, it doesn’t really matter both terms are confusing and don’t convey understanding to those outside our world.

This is one of the hardest parts of autism for me to come to terms with. Not so much the fact that she can’t speak but her inability to communicate her feelings.

My daughter is a great non verbal communicator. She lets you know when she is not happy about something. There are ways she can tell you want she wants. She gives lots a clues, can answer yes and no, make choices and once in a while can even Verbally give an answer. These are great strides for her.

She had come such a long especially in the last few years. Her communication skills have grown so much. She has word approximations, words, and even a few phrases.

She will try to say anything. She has apraxia and the world often come out unclear, with sounds transposed, dropped and difficult to distinguish.

I try my best to understand her. In context I can usually figure it out. Out of context It is much harder.

I hate that she can’t communicate when she is upset or something hurts. She tried last night, she tried so hard as I was hugging her and trying to calm her. She kept repeating four words and they were unclear to me, I couldn’t even guess what they were. It was apparent that she knew what she was saying.

That disconnect is so frustrating. My chest squeezed so tight imagining how that must feel. I began to feel tears coming and I held them back so she didn’t get more upset.

I am her mom and I want to help her and understand her. This most difficult part of this life.

The never knowing and always wondering what could it be is so hard.

The fear and anxiety of missing something because she can’t communicate these things.

This is why I will continue to work with her, teach her, and push her to communicate in anyway that we can.

I will never give up.

autism #nonverbal #nonspeaking #communication

S T O P

Alyssa was in room on her Proloquo2Go app on the IPad . It is a work in progress as she is very resistant . She is open to doing activities on it but not quite for communicating . Since she was on it on her own I went in her room to see what she was doing. She wasn’t happy and got quite annoyed with me . It is a fine line between treading lightly and pushing her enough / not too much. She mostly pushed angry and frustrated buttons lol . I told her I was going to the store and asked if she wanted anything . I don’t think she fully comprehends this . I am trying to show if she picks something she will get it to help make the connection. It is hard because she doesn’t like a lot of things . I asked her If she wanted a new stuffed animal and she said no loudly . I asked if she wanted a snack and she smiled and said yes . When I preceded to have her pick a snack she would just pick the snack button and when I started to try to get her to pick something specific she was getting annoyed started yelling , whining and saying no . She then started protesting and making noises and I was like what , tell me with this , what are you trying to say and pointed to the IPad . She opened up the keyboard part of the app and she typed stop and hit it so it said stop . Oh you want mama to stop ? Yes ~ okay then not quite what I was going for but she used the iPad to communicate something so I have to take it , and stop .. I still brought home several snacks . I was pretty impressed .

keeptrying

autismstubborness

What does this say ?

This is something I stumbled upon accidentally .

Many times I have just randomly asked Alyssa something I know full well she doesn’t know . Why I do this?
I have no idea . It’s never intentional .

I strongly believe in expectations . Alyssa needs to have someone expect more out of her . Even If it beyond what she knows or where she is . For example ; if I don’t expect her to talk she won’t , or if I don’t expect her to understand or be able to complete a task , she won’t . Although in reality She has suprised me many times .

One night about 6 months ago me and Lexi ( my youngest daughter 13 at the time ) were sitting at the Kitchen table writing our names on a piece of paper . Alyssa kept coming over and seemed curious to what we were doing .

I had her come sit and write her name which I knew she could do and then her last name which she did . Then I randomly said can you write sun . I l knew she can copy it if you wrote it first and sun was a word she always would copy . But never on her own , well she wrote sun and about 10 other words I asked her too . Me and Lexi stared at each other in disbelief . Like what !!?Now some words were spelt wrong , but you could tell what that were .

She was actually able to write the whole alphabet . Then I decided to turn the paper over and write a word just to see what she would do . I mean there is no way she would know A: she can’t talk , B : she needs pictures or some kind of visual symbols to under stand . So I write a word she knew it , so I write another she knew it , then another I almost fell out of my chair could not believe it .

Since she has been at the new program and they don’t work on stuff like this .. She has lost some of this skill , I tried to have her write some words and she couldn’t really do it . She could only do a couple and not spelled right . But , I wrote some words down and she knew what they were .

A couple of nights later I did it again and added a few more and she knew ( most ) not all of them . Now it’s hard because she doesn’t talk and her speech is unclear so I tried some words that she could at least attempt to say .

She likes animals so I started with some simple ones . She is funny though because if she can’t say it she will tell me the sound the animal makes. She has a lot of difficulty with certain sounds the C sound especially so when I write cow she will say moo . I think it’s good though because she is finding another way to tell me what It is .

That is all I want , for her to be able to communicate in some way . This shows some potential for communication in her future . Could she learn to write or read ? This opens up a whole new avenue of communication for her . The person they said would never talk , never understand without visuals , is so severely delayed that she just can’t function past her sensory and cognitive delays .

Always believe ! Believe in your child , believe in your instinct , expect the unexpected .

This was a complete shock to us !

#nevergiveup