Our family's journey with autism. An honest view into living with severe autism, the heartache ,the joy and everything in between. Join us on this adventure of autism, love, and chaos .
It seems like a million years , it surely has to a lifetime ago when we first met .
I was just a teenager but I had lived some life already
I was babysitting for a mutual friend .A house that was a hangout , a gathering of all the wanderers at different times. A house you frequented at the same time as me.
You could call it destiny I suppose
I remember the night perfectly , I was sleeping over because I was babysitting. First we were in the living room chatting , and then we moved to the kitchen. We talked all night long it was as if we knew each other our whole lives. We were still talking when the sun came up and we walked to the store and got hot chocolate . Of course everyone was joking and making comments and we just sat there rolling our eyes but I was secretly smiling inside .
You drove me home and we looked at each other and leaned in for a kiss but I was just a peck , you were trying to respectful or running scared not sure which maybe both .
Later that night you invited me for the ride to drive your Dad home to the Cape. When we came back from the ride we kissed in the car.
We went into our friends house and my heart was still skipping a beat. Later , I looked down at your ring and it was turned around with the heart turned in, meaning you were taken.
1992
I tried not to get too excited. I had been hurt in the past .
Going forward we were inseparable. We were either together or on the phone. Instant best friends , in love and connected .
You put my heart back together piece by piece.
You saved me in more ways than one . A year and half later we became parents to the most perfect baby boy. We became a family . We loved , we argued , we navigated family drama , we merged as one.
July 1993
There have been so many ups and downs , and there have been hard times , devastating losses , heart breaks , more love and joy than I could of ever imagined in a lifetime .
At the end of the day we have each other’s back Always .
I knew you loved me from the minute you held me. You are very big , Larger than life my mama says and your voice is gruff , some may even say you look intimidating but not me .
I knew you would be wrapped around my finger even then. When I looked into your piercing blue eyes I felt safe.
You fed me, you held me, you made silly faces all the things grandpas do. As I grew things inside me began to change.
Mama was worried but not you, you always reassured everyone that I was fine.
I stopped responding to my name and really any sound at all.
But you found a way to reach me, you would tap on the window with your big hand and I would come running and you would scoop me up into a big hug and I would laugh like crazy.
As time went on it came clear the typical path was not for me to follow.
You didn’t care and I think you loved me even more.
Everyone would try to get me to talk and they would be in my face, I know they were just trying to help and mama was so sad but I couldn’t do it. You would tell them to leave me alone, that I would talk when I had something to say .
Of course it wasn’t true but you picked me up and threw me in the air and it made me so happy, I would smile and giggle, I needed the break.
When we come to visit I would find you in your room and I would crawl into your bed. I would jump and crawl all over your bed, you would embrace me and I would lay with you at a time I didn’t allow many to even touch me .
But you got in, Somehow you found a way.
You loved me so much, you didn’t care I was different, you thought I was even better .
You were so big and loud but somehow you brought me comfort anyways.
When ever we were somewhere and I got overwhelmed you would take me outside for a walk and just let me run. You always had my back , Papa .
Your name was one of the first I said back when I was saying words. I wish I could say it again for you to hear.
I do point to my eyes and heart and point to you to show you I love you . You know I do right ?
I know you can tell . Our love needs no words.
As I got older, I saw you less but every time I saw you , you would ask where’s Papa’s girl and I would smile and laugh and come over to you.
You would spoil me with treats and bubbles and love and it meant so much to me.
You started to age and stay home more but I was still happy every time I saw you. You always made me laugh and feel safe. Our bond was so strong.
I wanted you to hear my voice again, I tried but I just wouldn’t work
Then one day papa you were Just gone .
When I went over your house it was just grandma now who I also love so much but where are you ?
I think someone said the hospital but I’m not sure what that means
Where did you go, no one told me
You were just not here anymore
I never cried because I didn’t know to be sad
But I won’t forget you , how could I
Just because I can’t talk, I can still love and miss my papa so much.
We went to the pond and let go balloons for your birthday . Mama said they would get to you , I guess your in the sky now . I laugh because that seems so silly. But I guess it’s true
I will never forget you papa and how much you loved me . They way everyone drove you crazy but I never did .
I don’t why I was so special to you, but that was just the way it was. You and me against the world
Papa the words are starting to come out now and I can say your name again . Mama showed me a picture and looked surprised when I said your name . She couldn’t believe I remembered .
But how could I forget you ?
I hope you can hear me. I hope you can see me still .
Your girl , you said I would talk when I was ready and it’s still really hard for me but I am doing it .
I told Mama I love you all by myself , she smiled and cried , you would be so proud . I can give real hugs now too . I wish I could give you just one more
I love you so much Papa ! Thank you for loving me know matter what and Always believing in me.
I am sorry it took so long to find my words and you didn’t get to hear them but I know you are guiding me from the sky .
I started writing this on Christmas Eve and never finished it . It is more vulnerable and raw then what I normally post but it’s important to talk about it
At times I feel disconnected
Disconnected from family
Disconnected from my husband , my own children
I love them of course but sometimes it feels if life is just moving around you it you are staying still
It’s Christmas Eve and I want to feel happy but I don’t
My tree is finally up and decorated but I don’t feel the joy I usually feel
I feel tired, just mentally exhausted
The days go by so fast , and I feel myself wanting to grab a hold and enjoy one , but I can’t
I have times where it lifts and I come out and play for a short time , but then I retreat back
You can’t see it , you can’t hear it , you wouldn’t know it if you were around me
I feel guilty for these feelings as I have so much to be grateful for
When everyone is cheerful and happy and everywhere you look , there are picture perfect families.
When you can’t shake the feeling no matter how hard you try
Depression is real and it’s dark
It’s not about being sad or crying into your pillow
It is about not being able to feel
Feeling like you are under a dark cloud that you can’t get out from
It’s going through the motions
Life is tough sometimes
Marriage , kids ,,teenagers , autism, finances , work , balancing it all , a pandemic is just the cherry on top . It can all be very overwhelming
And this on top of it makes you feel like you suffocating
To cry would be a relief because you would feel
It’s no ones fault , it just is
You can’t just “cheer up “ or “snap out of it “ thank you for the suggestion though
I live with anxiety ,not just any anxiety
Generalized anxiety , panic disorder , and ptsd and it is horrible at times but I silent pray for it because at least I can feel
You have to to find a way to put one foot in front of the other , to just put your head up
It’s okay to feel this way , but don’t let the tears silently fall by yourself
Let someone or something help
Pick up the phone and talk to someone
Say it out loud
Even though you just want to isolate
Depression does not make you weak , it takes so much strength to fight it
To go through the motions
To push through and even the times you can’t
And sometimes you need help
It might be in the form of medication , or a therapist , it could be a loved one or a friend ,
But talk about it , talk to someone do not carry it alone
Even though it’s so hard to reach out
It will help
It’s okay to not be okay
As a special needs mom there is a huge responsibility on you to be ok , to be strong , to fight , to live forever
But sometimes you have to take care of you; as hard as that is , you have to take a breath and help yourself
He doesn’t think the the things I think are important matter .
At all
And frankly it irritates me
Can’t he pretend to go along
He will humor me but still , not happily
This was going to be the year of matching Christmas pajamas , grinch ones specifically
I am on my phone trying to find them very unsuccessfully.
He thinks it silly it doesn’t matter
We still don’t have a tree he could care less
We are finishing up our breakfast and he signals the waitress to come to our table . I look up and he gives her a 2O dollar bill and says I want to pay for the guys breakfast over there .
I look around perplexed and see and elderly gentleman with a cowboy hat on siting alone eating . He goes to tell the waitress don’t tell him who paid .
We get up and walk out and I check out this guy as I walk by looking for a clue or some kind of recognition . I smile through my mask and mumble a platitude as we pass by .
We get in the car and I say that’s was nice and he says , I overheard him talking to the waitress and he was talking about how he lost his home and his business this year . So he paid for his breakfast , no big deal.
While I was busy worrying about matching pajamas oblivious to anything else
And why ; my daughter with special needs will not wear them
I want the picture perfect Christmas things , even though I’ll never have them
We are busy and messy and Stressed
Our house is loud and chaotic
We are literally the gridwalds
My daughter will fight me on decorations because she doesn’t like change
We can’t have the picture perfect things
Our life just isn’t set up for it
And it’s hard to give that up
It’s hurts
I want some kind of normalcy
Christmas day 7 months prior to diagnosis . She always went off alone away from everyone . We started Early intervention 2 months later
Yes things have progressed over the years
I know in my heart that is what matters
But the progress is so painstakingly slow
Christmas Day 5 months after autism diagnosis. There is no pictures of her opening presents Or sitting near the tree .
My husband did this gesture out of the kindness of his heart
Not for credit . Not for a picture or a Facebook post
This is the true meaning of Christmas: it’s all the love you’re surrounded with , it’s the blessing your life brings you . It’s not trying to have what other families have , or trying to get that perfect looking picture to post
My daughter is 24 years Autisic,and non verbal
She has willing watched Christmas movies with us for the first time . She rode the polar express train and was so happy to see Santa . She is aware he is bringing her a present . She has picked presents for herself off of Amazon.
This is our Christmas miracle
Alyssa on the Polar express after receiving bells from Santa
Today my husband opened my eyes to what matters . Matching pajamas don’t matter
It has been a trying couple of weeks. Lots of behaviors have resurfaced , flipping , dropping , screaming and some aggression . While things can still be challenging at times, we have learned to navigate pretty well.
We definitely still have episodes from time to time , bad mornings and bad days. If she gets triggered and her anxiety spikes it can be difficult.
We have not had a couple of hard weeks in a row for long time . I honestly can’t even remember when.
I have been talking about Christmas and she wants no part of it . If I mention the tree or presents , she says no thank you , and makes it clear she doesn’t want to hear about it .
It’s a fine line as I want to prepare for what’s coming but sometimes it causes a lot of anxiety for her .
It is so hard when she doesn’t really have an interest in anything , but she likes opening presents.
The past two years she has had much more of an understanding with more awareness during the Christmas season . Last year she was able to pick stuff for her list on amazon and the year before that circled stuff in the Walmart catalog , which was the first time ever.
Which I thought was great . It is so funny to see what she picks .
Ther other day I got her to picked stuff off amazon , she knows exactly what she likes and what she doesn’t . She will scroll right by certain stuff and stop and point at others.
She gets it and that simple thing means so much because for 20 years she couldn’t show us , and didn’t seem to have any awareness of it .
I couldn’t figure out why she was getting upset when I mentioned it . She usually gets happy about it .
I was wondering if she had lost it . If she was Just not interested in it anymore. I was honestly getting a little sad about . We only have only had this for 2 years . It would cruel to take away so soon .
And yes I know I am making this about me . I love Christmas and I want to share that joy with her . I love that she gets it and we can “talk “ about it .
Autism has already stolen too many things , and I didn’t want to give up this . It is already hard to get her through the changes as it is .
Tonight when I brought it up she smiled and nodded yes . I talked about decorating the tree and watching a Christmas movie .
She doesn’t really watch movies but last year we got her too watch a couple Christmas ones and she watched the Dora movie too .
It is hard for her to follow along so I try to keep her engaged as much as I can . Well she went over and sat on the couch and I think she thought I meant now . I said you want to watch a movie and she pointed to the TV and signed yes.
We put on the Grinch , the cartoon version and I didn’t realize there was a new one , let alone it was an hour and half as apposed to 30 minutes .
She did great !! She laughed and smiled it warmed my heart . I was pointed out things and asking her what things were and she was repeating and identifying them .
Engaging in a movie is so rare !
She started saying something over and over and I was trying to listen to figure it out . She was saying Cindy loo hoo , over and over to herself . It was so cute. She was repeating tons of words from the movie and she was so happy !!
She says cheese when she saw the camera ! And is saying Cindy loo hoo while watching the movie ❤️
I am so grateful she is back to herself . I am so grateful she was able to experience this . These are the things that before autism was in Our life were assumed .
I assumed my kids would snuggle on the couch and watch Christmas movies , I assumed they would sit at the table and make Christmas lists , I assumed they would know who Santa is
There is so many things we assume we will have and that is not always the case . Many people never get to have these , or in her case have to wait 2O years to experience them .
It makes it so much sweeter when it happens .
I appreciate this moment , this experience . Even though it is such a simple thing it brought me so much happiness
It is a gift .
We have to keep trying and hoping . It’s never too late . We have to find the joy and celebrate the holidays in our own way .
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.
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 .
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
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 .
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 .
