I am sitting here with old home videos playing in the background, Christmas 1996 to be exact . It was Alyssa’s first Christmas. We had no idea the journey our life was going to become, no idea the twist that would be starting a year later.
My baby girl was having her first Christmas , sitting with a bow on her head with no signs of anything amiss, while my three year son was tearing through presents like a tornado.
We were at my parents house living with them while saving for our own house, which we purchased just 7 months later. It was our little family with my parents, and my sister .
Life seemed so much simpler then . I’m not saying it was perfect, it wasn’t .
It was full of hope. Full of love and laughter and dreams for our family . Goals and determination for a good life . Young and in love and on track to purchase our first home. Relishing in the excitement of our son and the assumption our daughter would be doing the same before we knew it. Why would we think any different as she sat on the couch, cute as a button with my dad , playing with wrapping paper and taking everything in as 8 month olds do.
It was free from the pain I have experienced since.
They pain of hearing the word autism
The pain of learning my daughter may never talk or walk the typical path
The fear of realizing our move to the suburbs away from the city in search for better life for our children, would also bring us away from friends and family and leave me isolated with two young children and no help.
A young mom 22 years old, alone with a very challenging child and a typical preschooler, trying to make sense of having a child with autism and all the difficulties that come along with it , and a young Dad with the weight of the world on him as he tried to work two three and sometimes four jobs , to support what we realized was not going to be a two person income. It was not in the cards at the time.
We did the best we could and our family supported us and loved our little girl the same if not more, and that has been one of life’s biggest blessings.
It was still a very painful thing to process and accept . At a time when there was no autism awareness at all. All the physical and mental demands this life brings and the emotional toll it takes is sometimes overwhelming.
To try to be hopeful and just move forward the best you can is all you can do. At this time I had no idea my child would be disabled for the rest of her life. I had hope as she was stubborn and tenacious, ridiculously beautiful and so bright, and if anyone could overcome this it was her . If any parents love and determination , if their devotion or their willingness to do anything for their child , could change the course of this path then surely it was us.
It would happen it just had too .
Three years later a devastating cancer diagnosis came . Another completely unexpected hand was dealt . My mother in law, Alyssa’s Nana was diagnosed with pancreas cancer. She was Alyssa’s person , she adored her and they had such a strong connection. She was there during the hardest of times. She completely doted on all her grandchildren but Alyssa was special to her . To think about life without her was completely unimaginable . She was the glue that held the family together .
They gave her 6 months to live and she was only 48 years old. It made an autism diagnosis pale in comparison.
She was taken way too soon. It was devastating, and as hard as autism is this showed me there are harder things in life . Other unexpected things that can change everything.
There are times in life where things are really hard , things hurt and feel like they can swallow you whole . An autism diagnosis can do this , losing a parent can do this, a pandemic can do this , there are many things in life that can and will do this .
This year has some really difficult things . A scary unknown virus, a pandemic, a shutdown. These things seemed as foreign and unknown as Autism pre diagnosis.
Loss of services, regressions, loss of sleep, the anxiety of the unknown , sickness and death for so many. The uncertainty of it all, wearing masks , the behaviors coming back and Learning a new normal , it all felt like a movie, or an alternate reality ; how could this be real life?
At the same time there came some good . Family bonding and togetherness , life slowed down . We learned to appreciate the little things . We spent time together . Alyssa, although regressing behaviorally , was progressing in other ways .
There were so many more opportunities for learning , modeling and interacting .
It made us take a second , an extra minute and find ourselves again .
We have to learn to take the good with the bad , to find the joy , and push the anxiety aside . To appreciate the little things . In some ways it’s a lot like an autism diagnosis , we have to find a way to adapt , to find joy and hope through the uncertainty , to find a new normal and forge ahead the best we can .
In not only 2O20 , but in life in general it’s about learning to live in the moment, to love and laugh and cherish these times of contentment , to work through difficult times without losing hope and losing ourselves .
Instead of achieving happiness we learn to soak up the good times , live with gratitude and give ourselves grace . Find the light or at least move toward it .
For a long time I hated autism , I resented it , I blamed it for stealing my baby girl’s life , and although a part of me will always grieve that life for her , I can see past it. I can appreciate the things autism has given me .
It has given me a beautiful girl , who will always be my girl . Who will always be sweet and innocent . Who knows nothing of darkness and although is forever child-like , radiates joy . Her smile lights my heart always.
Just like autism this pandemic has brought me unforeseen gifts . Through the zooms and the unexpected gift of time , I have made connections and friendships I Never thought I would have . Amazing moms who live the same life as me . Who understand and appreciate all the struggles and joy this life brings .
Alyssa inspires others, something I never thought possible . They look at her and see light and hope . There are no words that can describe how much that means to me . They see how amazing and special she is , just as I do .
So I welcome 2021 but as challenging 2020 was it bought me blessings too. It taught me things that I want to bring into the new year and not forget.
You never know what is waiting around the corner positive or negative . Taking life as it comes and to not always search for the next best thing, or something better, but finding solace in what’s right in front of you.
Each year brings hope for a better year but I think every year has its difficulties some are more difficult than others but it’s learning to slow down enough to appreciate the happiness and peace in between the tougher times that makes a difference, so here’s to love life and laughter in 2021.
He doesn’t think the the things I think are important matter .
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
I want some kind of normalcy
Yes things have progressed over the years
I know in my heart that is what matters
But the progress is so painstakingly slow
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
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 .
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 !!
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 .
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 .