Finding Gratitude

Gratitude is one of those things that linger in your heart and float around your mind .

It is always there but you don’t always acknowledge it.

Being a special needs parent is difficult

At times it feels like your life is so much harder than others around you .

Things are never simple

There of are so many things to be grateful for but it is easy to forget them

Especially this time of year

Even though we are in the month where we are constantly reminded to be thankful , we are sometimes anything but

This is the season where there are so many painful reminders of how different your family dynamic is .

When you watch your child struggle with the changes in routine, the busyness off the holiday season and the stress as the tension mounts

Everywhere you look there is happiness and cheer , while your child is crying and trying so hard to cope with the situation .

This where it gets so hard because we have this societal pressure to try to put a smile on and join in on all the fun . We have other children who deserve to take part in it. We have an innate desire to have our child participate and enjoy things . We want to participate and enjoy things.

Once they get triggered , and their behaviors spike we are left crying on the inside . This is incredibly isolating . You go on Social media for a distraction and you are met with picture perfect images . It just reinforces the differences and ,and leaves you feeling empty.

Sometimes we need to do our celebrations a little differently. It takes time to learn that . It’s okay when you don’t get that perfect picture or any picture at all for that matter. It’s okay to feel unhappy and to be frustrated .

It is also okay to try in spite of the chaos . We only fail when we don’t try .

Find those moments of happiness and cherish them. It doesn’t matter what those moments look like to others .

First time playing a game , Christmas 2017

Find your tribe of other people who get it , I did and I am forever grateful

Surround yourself with family who understand and give you grace during these times , and who help you find the joy or at least acknowledge and tolerate the challenges . I am incredibly thankful and blessed with this as well

Be grateful for the simple moments

I am grateful for the happiness and light that radiates through my daughter . Even though it takes a lot to get her there, especially this time of year .

Seeing her as well as my my other children happy fills me with gratitude and joy. At times it comes in pieces so when it comes together all at once it is the best feeling .

Autism , can bring big emotions . Anxiety , sadness and frustration , even joy and happiness can be overwhelming for them at times , it’s all about finding a balance and finding what works for your child and your family.

It’s being grateful for the little things

Finding beauty and joy within the chaos .

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

Three simple words

I love you

Three simple words

Most of us throw them around Loosely

Take them for granted

We say them when we hang up the phone

When a loved one leaves the house

When we kiss our little one good night

Sometimes out of habit

It’s something a mother hears a million times over a life time , that is unless your child is non verbal

Then you might never hear it

One of those things that most don’t even think about .

I have told my daughter “ I Love You “ everyday multiple times a day for her whole life .

She begin to respond and say u too and then make the kiss sound which I will do back and she will do again and I will do back ~ you get the picture . And that’s okay , I’ll take it . It’s her way and she didn’t start doing that until she was in her upper teens . It’s still special to us .

This past Summer she said I love you unprompted on her own for the first time ever . She has only said it two other times since then ~ it is wonderful every time . It’s quick and not 100 percent clear so you have to listen , pay attention .

There are some that question if people with autism display emotions . I have no doubt my daughter loves ~ I know she does and I don’t need the words but they are nice to hear .

I think for her to say it she has to truly feel it and be happy and content . The same thing with unprompted hugs and kisses . She does them but they are rare and far in few between .

Lots of hugs on command but not on her own . That makes them all the more rewarding .

Yesterday on her way into school she was standing by the car and I was getting her stuff and she said simply “I love you “.

It’s so shocking still . It makes me feel so happy and of course I say you do !?! Thank you ❤️❤️ And make a big deal out of it .

The thing with autism and having someone non verbal in your life . You learn to appreciate the little things . In fact the little things are not so little .

You have to open your heart and listen . When you think you hear something you do

You have to believe , believe in your child
Believe In your love and believe in what the future may bring

Mask wearing

Alyssa did something unexpected.

We running errands and she was getting crabby in the car

It’s hard she is used to going places not just staying in the car .

I really don’t want to bring her too many places plus there is no way she would wear a mask . I’d bet on it

NO WAY !

She was getting out of sorts so my husband is going to run in the gas station to see if she has to go the bathroom even though she said no

I’m like damn she won’t wear a mask . I said tell them she has a medical exemption if they say anything . I’ll come in if they say anything . I just left from seeing my mom through a window and I’m not in the mood for ignorance .

He grabs the mask and says it I’ll just see . She whines a little but puts it on . Ok but she won’t leave it on . My husband is pointing to his . She freaking wore it the whole time . I am so shocked ! Then she went in stop and shop and wore it . I can’t believe it !!

You have to try . Next time might be a No who knows ? I am literally so surprised .

#unpredictable#keeptrying#autismgreatness

My flower girl

When me and my husband got married Alyssa was 5 . She had gotten over the hump of the worst and most difficult times but was still pretty challenging . You never knew what could trigger a melt down , cause her to bolt or anything in between .

But I really wanted her to be my flower girl . I knew it might be a disaster but I wanted to try . Some thought we were crazy because honestly it was going to be an extraordinary challenge to even get her in a dress . To think she could handle walking down an aisle in a church no less was almost ludicrous . But I didn’t care I was going try ..

You see the thing with autism is you have to try and a lot of times it’s gets the best of us . It’s scary and overwhelming . It can be frustrating, embarrassing and down right heart breaking . But the successes are the best thing ! It’s feeling true happiness , relief and so much love all rolled into to one .

Unfortunately you need to go through a lot of fails in order to get the successes , I won’t lie sometimes it’s a down right disaster .

The exposure is everything it helps them so much .

I am incredibly stubborn ,so is my daughter and so is autism ~it doesn’t always end well .

I also am also realistic ,I knew that my daughter might not be able to handle it . I made a game plan .

I wanted Alyssa there ,the whole family was there and I wanted her there too .

I had my niece who was 7 be a second flower girl . That way she could help guide Alyssa . Also If Alyssa refused or melted down we still had a flower girl .

I hired a teacher from her school to come and help with her . She could take her out if it was too much without disrupting the wedding .

She wore the dress and walked down the aisle and it meant everything to me 💙

We truly didnt know what would happen . She did it and If I didn’t try and let fear dictate I would of lost out . It’s not always easy but it’s so important to try.

The experiences help them learn to tolerate the environment. It takes time but they do learn and it gets easier .

Daddy’s little girl

I’d like to say Alyssa has always been Daddy’s little girl , but that wasn’t always the case .

It is the most horrible feeling to see your child in pain and not be able to help her . It makes you feel absolutely helpless . It was even worse for her Dad , as a father you want to be able to protect your daughter.

There was a time at the peak of her sensory issues that Alyssa would scream for hours . It was heart wrenching to watch .Only me or her Nana could go near her. If her father tried to go near her she would escalate and scream louder . Her own father could not touch her . There was nothing we could do to help her . Eventually she would calm down and go back to herself, these screaming episodes would last 2-3 hours .

This was her hardest phase and believe there have been a lot of them . We didn’t know what to do for her or why this was happening . We didn’t even know she had autism , or what that meant , for our family or our little girl .

Today she feels safest with her Daddy which how it supposed to be ! They have an amazing bond .

#itsbeenalonghardroad

#wewillalwaysbehere

#mylittlegirl

Early intervention days

Alyssa began early intervention at 22 months . This was just 5 months prior to her diagnosis .

Most of the time she was only in a diaper if even that. Her sensory system was out of control .

We were about to enter a world that we had no idea about ; no idea how to navigate , or the difficult road that lay ahead . There was very little awareness then and it seemed almost no girls with autism .

I was still living in the bubble of thinking that she has some sort of speech delay and sensory intergration , now know as sensory processing disorder , which explained many of her tantrums and avoidance behaviors .

I had no clue to the world we were being thrown into . No idea about the heart break and the devastation that was about to come , the life long struggles she was going to face . Here I thought she was going to learn to talk and get some therapies and everything would be just fine .

Never in a million years did I look at her face and imagine the severity of the situation. With an autism diagnosis you get this period of time that you are in the dark … You have no idea what’s coming and I’m not sure if that’s a positive or a negative . It allows you to have hopes and dreams for your child to then have them ripped away and crushed .

At the same time you have this bubble where things are seemingly typical and you get to have the feeling of normalcy .

When I look at these pictures that seem like a life time ago , I know these were the beginning of the most difficult times . There were some very dark days coming some had probably already started , but when I look at these pictures I see my beautiful little girl . She was so funny and cute ! She loved her brother so much ! ( when she wasn’t attacking him, poor kid ~ but he adored her too )

I don’t see the pain , the frustration and the confusion that I know over took many of these days . I can’t help but to wonder if there was more awareness then if things would of been different . Either way underneath it all she was our little girl full of mischief , stubborn as could be , and beautiful . We loved with all our heart and of course still do.

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