Dear van driver

Dear van driver ,

I am trying to give you grace , because you are new. I know you look at my daughter, and don’t see how vulnerable she is.

Autism is an invisible disability. You can’t see it by looking at her. You can’t tell how impacted she is by it.

You see a young lady who is pleasant , and while quiet, her smile is as bright as the sun.

There is another side to that smile. There is anxiety, rigidly and lack of the ability to communicate.

You see my daughter looks quite capable and she is of many things , but there are things that don’t quite resonate.

She is non verbal. She can not speak or make a phone call. She would not know how to react in an emergency. She does not know what to do If she were hurt or in pain.

I guess no one communicated to you about any of these things. You dropped my daughter off and left her alone. My daughter is never alone the fear and confusion of that alone could cause a meltdown.

You showed up early and no one was home and you left her here anyways.

You could of put her in jeopardy. You left her unsupervised and unprotected.

There is much controversy and differing opinions about labels and functioning levels in the autism community. Many think they are unnecessary and negative, some even believe they are degrading.

I have to disagree I thing they are quite useful and actually a needed tool to keep our children safe.

My sweet girl ;
mommy loves you so much and will do anything to keep you safe,

I am so sorry that you were left all by yourself

Thankfully Daddy showed up minutes later and you were sitting on your bed taking off your shoes. He had quite the surprise when walked in and saw you. I’m not sure if you even realized no one was home.

It wasn’t understood how protected you need to be

I myself do not like to say you are low functioning or even intellectually disabled. In my eyes you are so smart. I am not measuring those unimportant things on a paper.

I measure things that mean so much more like your heart and , your spirit. There is no number that can represent that. How intuitive you are , and how the way you observe and take things in. The way your laughter can ring through the darkest of days and bring a smile to my lips. I can’t help but to feel the joy that radiates though you.

A have to make a phone call tomorrow. I have to emphasize how this is unacceptable and you can never be left alone.

I have to use all the words that no one likes to convey exactly what you understand and what your “level” is and I will make it crystal clear , I will shout it from the rooftops if needed to keep you safe.

I don’t use these words because I think any less of you because baby I think the world of you . In fact I put you on a pedestal

Your are not less worthy because of these things you just need more help and that is okay .

I work with you everyday to help you to communicate and learn and in hopes that someday these things will improve.

You have defied the odds before and I have no doubt you will continue to do so.

autism

Looking away from the darkness

I am tired 

No not tired I am mentally exhausted 

I am going to a dark place and I can feel it happening and feel powerless to stop it 

I am tired of being knocked down by autism 

Not autism itself but by the effects of it 

When I feel like I have accepted it . Moved on 

Made the best of it 

But it still can knock me down when I least expect it .

The feelings 

I thought I was used to it ,that I forgot about them 

The heavy , the why and the unfairness of it all 

It always comes back to haunt you 

I know brighter days are ahead but it’s hard to see 

Through the tears , the frustration , the exhaustion 

I’m battling my own mental health and I’m weary

The joy , the triumphs and the breakthroughs usually over shadow the rest 

But they are always there lurking underneath , usually pushed to the darkest corners of your mind far away from your heart. Until they come to the surface sometimes with no warning and take on a life of their own. 

It crushes your heart and consumes your every thought, 

When the darkness stares you in the face 

Why 

Why does my baby have to suffer like this 

Why is she put in such a vulnerable position

Where things can happen and you ‘ll never know 

Why can’t things be better 

Where we live in a world will people care just as much about disabled adults as they do disabled children and in turn just as much about disabled children as typical children 

Where it matters what happens to them and who is taking care of them

We want to protect our children always but we can’t be with them every waking hour and even if we could we won’t live forever

What will happen when I’m gone

But then I walk in and she is sitting there with her bright eyes ,so beautiful I can just get lost in them, my heart clutches as I lean in for a hug and she squeezes me back, something she has only done in recent years. 

I watch her as she goes in her room and comes out with her tiger , she is having him hold a dinosaur with a tutu and she is laughing as she is showing us. That laugh is medicine for my soul.

She is so happy, so unaffected by the sadness of the world

One of the biggest blessings of her autism. The worries of tomorrow slowly slip away.

My daughter is a gem, precious and full of beauty. I am forever grateful to have her as my daughter , she shows me the light through her eyes and makes me appreciate it, feel it 

She will always be my reason to keep fighting , for her and others like her. My motivation to wipe my tears and hope for a better tomorrow. My love for her will always trump everything else and give me the strength to stand tall beside her.

Early Communication

Communication

When I look down at my daughter with bright green eyes and crazy curly hair , I feel like might heart could burst . At first glance she looks like a typical two year old bopping around the house with her Barney doll , or what ever item or toys she chooses today .

She is smiling and very busy as she wanders through the house exploring , climbing and twirling.

She will even come over to me and stretch her arms out for some bouncing and tickling and she will giggle and it’s the sweetest sound you will ever hear .

She will come to me and she will gesture towards the fridge , you see she has no words , not even any sounds really .

I will offer her her cup and she will either
Happily receive it or throw it if it’s not what she wants . I will try to look at her but she will look away unable to look in my eyes .

The frustration will mount as I ask her what she wants and offer her a choice between two items . She will take one and she will be off again , sitting at the table is not a skill she had acquired and I wonder if she ever will .

I will repeat the words , asking her to make the sounds but it falls on seemingly deaf ears . We thought she was deaf actually for a while she didn’t respond to anything we said , not even her name . She is now responding to that , she will turn her Head and look and then quickly turn away but that is progress so I’ll take it.

She then retrieves her cup and climbs on the couch and the looks over at me . She wants to watch Barney , so I ask her do you want to watch Barney a she looks at me and then at the tv . Can you say Barney ?

She did say this before it was one of her first words but we haven’t heard in over a year .

She looks at me at say can you say Ba ? Say Ba slowly repeating the sound , silently pleading in my Mind for even a sound just one . But no sounds come out and the silence is deafening. She begins to get upset and starts flailing I retreat and put on Barney for her .

Her whole face lights up and she starts bouncing up and down while the songs start her favorite part . She is bouncing and squealing with delight . Just like that she is in her happy place .

After she resets she goes over to the door and slaps it . She wants to go outside , ok let’s get dressed . Easier said then done she does not like clothes and it is like wrestling and alligator to get her dressed .

As we are walking through the kitchen she grabs my hand and pushes it toward the counter ~~ ah she wants bubbles

She loves bubbles ! Can you say bubble ba ba bul . Nothing ~ I like I look deep into her eyes , searching looking for something , anything… She becomes Frustrated and impatient , and starts protesting and letting me know in her own way .. I want bubbles and I want them now . As I grab the bubbles I wonder if she will ever be able to say the words , to communicate .

You see I didn’t hear the words non Verbal autism yet , I didn’t know what that was and had never even heard of non verbal or a child who didn’t learn to talk .

I just longed for communication. For less frustration and more connections .

What I didnt know was she was communicating . This was her very first stage of it .

Pointing , Gesturing , pulling your hand and believe or not slapping things is all part of communication , it is considered nonverbal communication and it is the first step of communication

So as I Scurry outside with the bubbles and try to soldier on having no idea what this journey will bring and if words will even come , I remind myself she is only two she has time .

She will talk right ? Everyone learns to talk. Don’t they ?

She runs and jumps with excitement as I begin to blow bubbles . She has not a care in the world and I can’t help but laugh because she is so cute and her excitement is melting all my worries away at least for the moment

Communication is what we must fight and push for not just talking , as hard of a pill it is to swallow , there are kids who may never Speak .

We have to find a way to give them a voice and teach them to communicate .

Loveneedsnowords

communication is key

Cookie

Last night after dinner I went to have a cookie and I looked at Alyssa who was sitting at the table . Now normally I would say Do you want a cookie and she would nod /sign yes , and then I might say -say cookie , and she will say cookie . She says it really good but needs prompting . So I decided to get pushy and greedy , and after she said cookie I said say I want cookie . She then said I cookie , and then I said I want cookie and then she said I want and then just looked at me .

It’s sounds so simple but this is so difficult for her . You can see how much she has to concentrate . She just kept looking but couldn’t say it. So I tried again and prompted the I ( I put my hand on my chest for I ) She then said I wan Cookie !!! She did it she said a sentence 🙌 I know I had to prompt but a sentence ? That’s three words together ~ First time ever 💙💙💙. I will try it again today and try to video it

cookieforthewin

autismwin

nevergiveup

Banana

Alyssa has a new favorite word ! Most of her words she will either repeat a word ( or try to ) or she will identify something that you show her a picture of ~ usually an animal or something familiar . She can also identify all of us which is awesome ! She does not use words on her own , not even Mama .. She is saying Banana ! On her own . Constantly ..

She started saying it randomly the other day , she saw one on a towel it was a monkey with bananas :
Of course I get excited and clap for her .
Now she keeps doing it , although it’s not functional she keeps saying it, it’s like she’s practicing and she is so proud of herself . And she says it like a nana it’s so cute 💜. I’ll take it after years of not even making a sounds .
Don’t know if this a sign of more to come ?? It’s a door opening , even if it’s just a little bit . That’s what this journey is all about , always finding the hope , the silver lining .

New iPad

Alyssa is doing great at speech . She is going twice a week. We got her a new IPad and we hoping to get her to use the Proloquo2Go app on it . She currently is not using her old IPad will not use at school at all. This means she has no way to communicate or for anyone to explain what’s going on , which is not good . We have worked on some other apps on it and she was willing to do it , which is a good first step . One the hardest parts of her being non verbal is that you can’t explain things to her . She doesn’t understand it benefits her and that it will give her more of a voice .
Two little boys in the speech waiting room were making fun of her . ( They were autistic twins but verbal ) one was repeating her sounds and word attempts , the other came right up to us and said you talk weird . Her face for visibly upset and she put her head on my shoulder , normally she would not be affected by this . I don’t what she understood but she understood something . She is making so many more connections lately . I know they weren’t trying to mean just curious and obviously did not have a filter . It was surprising she understood though . She went with her therapist ( she was like I’m out of here 🙃 and had a great session ) we will see what happens when we introduce the New IPad with the Proloquo2Go app … fingers crossed 😊

autismawareness

keeptrying

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

Trip to the dentist

Three years ago I attempted to bring Alyssa to the dentist … it didn’t work out . We showed her videos and pictures . Her speech therapist made a social story . We talked about it repeatedly . She screamed the whole time and they could barely look in her mouth . The only way they could do a cleaning and any other possible dental work she may need would be to book an OR room at fransicans children’s hospital put her under anesthesia. For a cleaning ? I reluctantly agreed . I know it sounds drastic but in order to blood work or even a shot she needs to be sedated . We booked the date and she ended up having a cold so I canceled the appointment and never rescheduled . I know this is something people do but it gives me so much anxiety .

I attempted to bring her again this year . I talked about , showed pictures all that stuff to help prepare her . I’m the car she was ok just saying ahh and opening her mouth . As soon as we pulled into the parking lot she started whining and protesting . In the waiting was full out crying and screaming . The dentist looked at her and said I’m sorry I think we are going to go the OR route . We brought her back to the exam room she was screaming and crying everyone staring at us ( nothing new ) We tried to calm her down and the dentist told her she just wanted to look . Alyssa calmed a bit and let her look.

Although anytime any moved at all she would start yelling and look to escape . It’s like she wanted to listen and do what we were asking but a part of her was afraid and couldn’t . The dentist and her assistant were so patient with her constantly reassuring her and coaxing her . It took a lot of coaxing and waiting but they were able to do the cleaning , however it had to be on her terms . She had to have a mirror so she could see what was happening . Part of the cleaning was done with her standing up .

Everything they did they showed her and let her touch first . Once she didn’t feel threatened they were able to get her her to sit in the chair . Kind of , she would only sit straight up she needed to know she could get out if need be

. Any time the dentist even moved she got upset , she was waiting for the other shoe to drop . The dentist got it . She understood she had to make her feel safe . I can not believe she was able to tolerate .

She did so good and we were so proud and made a big deal . I took lots of pictures and videos so she can look at them and watch them . This was a huge accomplishment for her !

nevergiveup

Shescomealongway

ourdentistrocks