Silent strength

Young love , there’s nothing like it . You live in this bubble of hope. You make plans for the future and wonder about what your life together will bring.

You dream about where you will live , how many children you will have, what vacations you will take. You look forward to a happy life together.

Especially being so young and naive you are not imagining all the heartbreak and loss you will have to go through. It’s a part of life and how you cope and support each other as a couple has as much to do with how you get though these things together as the actual loss itself.

As young couple , we turned into young parents and we were motivated and determined to build a good life. We had a son and then a daughter, and then we bought a house. Things appeared to be going well or so we thought

Our daughter was struggling and wasn’t developing language. She began to disappear before our eyes. She stopped responding to her name and had some different things she would do. You pushed to get her help when the doctor kept wanting to wait. Things began to get more difficult. She would scream and cry for hours and wouldn’t allow you to touch her. You never left her side. She had many behaviors , she would head bang constantly , flop to the floor and you were so patient, so loving to her. It wasn’t always easy.

We were waiting on an appointment for an evaluation. The day finally came and two weeks later we went to get the results. I sat directly in front of the doctor and you sat over to the side observing , quietly , calmly. Then with one word that bubble popped, turning our world upside down. ” Your daughter has autism.” Tears poured down my face and you stared straight ahead, the rest was a blur.

You held me in your arms while I sobbed
You wipe my tears and told me everything would be ok even though your own heart was broken too

You stood strong and tall so you could hold me up when I need to lean on you .

I yelled how unfair it was , how could this be ! And you tried to keep me calm and reassure me.

I didn’t understand for a long time how it was so much easier for you so accept. How you weren’t as sad as me. I didn’t realize that you just as devastated as I was, but was more concerned with being strong for me and our daughter than yourself. You cried alone , you grieved on your own time when no one else was there.

As time went on you never wavered, and we went through some really hard times. You always loved her know matter what.

You and me , we don’t see eye to eye on everything. Actually there’s A LOT we disagree on.

But ,The important things we agree on.
We have agreed our daughter will be loved and cherished, no matter what. She deserves to have the same experiences as everyone else. She will be treated with respect and love , and not left out. We will bring her out with us whenever possible. We will kiss and hug her no matter how hard she squirms and pushes us away. We would do anything to ease her struggle and help her.

It was you who through her in the air and bounced her over and over. It was you who kept trying to get in her world until she let you in, never giving up. It was you who made her feel safe. You were the one who found her when she eloped into the neighborhood full
of woods and a pond. I was so terrified , and you brought my baby back. You were the one on the other side of the phone who took the brunt of my frustrations and tears. You always gave me grace and were my sound of reason.

Well Mostly you gave me grace, after all you aren’t perfect and this life can be really hard. There is lots of frustration, guilt and fear. The early years were difficult but you were willing to try and take her anywhere where I wanted. You would be the carrying her over your shoulder when things didn’t go as planned.

You were the one who knelt by her side when she had her first seizure and rode in the ambulance with her. I was frozen in fear.

You are her hero. She is daddy’s little girl and I don’t need her to say the words to know how much she loves you and fells safe with you. I know because I feel the same way. You have a way of making everything okay, even when your crumbling inside. You never show it. You always make us feel safe.

You love us , put up with our crazy and take care of us.

We have been through some really hard times, there were times I thought this life could break us . We found strength in each other and in our daughter.

We are always able to rally around her , encourage her and believe in her.

We have a beautiful family, four amazing kids and an incredible bond . Best friends underneath it all

Things get hard at times, we argue , yell
and bicker. We get angry and resentful but we always circle back to each other , our children, and especially our daughter. Her needs are significant and she is the ties that binds our family together.

You are the glue that holds me together. You still wipe my tears and let me know it will be okay. I couldn’t of asked for a better father for our daughter, or a husband for me.

You are truly our hero !

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.

Simple would be nice sometimes

Things with autism are never simple

There is no last minute impromt trips that are met without resistance, Meltdowns and at least a few tears …

Sometimes you wonder if it’s even worth it .

We are taking a day trip to Martha’s Vineyard , mostly because my sister is there with my niece and my 16 year old daughter . I am venturing down for the day so my other daughter ( Kierra ) can join them for a few days .

Me , Alyssa and Kierra will drive down the cape , park the car take a shuttle to the ferry and board the ferry . It’s sounds
So simple doesn’t it ?

Again with autism and anxiety always looming in the background things are never easy .

Alyssa does pretty well out and about . She has come a long way . I would never even dreamed of attempting this a few years ago without my husband . When she was younger it was all hands on deck all of the time . It was always plan b and c , divide and conquer if necessary, always have a back up plan and an exit strategy.

When we made the plan I thought sure she will enjoy getting out for the day , she spends too much time in the house I should get her out . She generally enjoys being out.

She had adapted and learned and really had come such a long way . Until
Something upsets her , confuses her or triggers her .

It is almost impossible to predict

So you try to plan and prepare but sometimes it doesn’t make a difference
And sometimes you decide to wing it

We were getting ready to leave rushing of course , running late and my daughter was looking for something to put her stuff in . I told her I have a backpack in my room she could take that.

Never simple

Alyssa decided that she did not want the bag to leave my room and she started protesting AKA yelling

I told my daughter wait until we get in the car run back in the house throw her stuff in the backpack and bring it out after

I though it went without saying don’t let her see it . It didn’t, Kierra comes out with the bag in her hand . Alyssa started screaming
And gesturing to the house

Non verbal does not mean no communication her point is loud and clear the bag goes back in the house , she then got out of the car prompt dependency out the window. She was going to grab the bag her self . I told Kierra to bring the bag back in the house and I would go get it , hide it and put in the back of the car .

I tried backing the car in the driveway but she’s too smart she knows I’m up to something and I park and open the back bit of course it won’t open . She gets out and inspects the back . She is on high alert and there is no way to sneak the bag at this point .

Again never simple

I switch tactics show her the bag and tell her we are bringing it . She begins to escalate, I tell her she can stay home I am taking the bag and leaving ~ not my finest moment I’ll admit . She continues to gesture to my room while getting more frustrated . I tell her Kiki needs the bag .
I show her what’s in it .

I tell her you can carry it and put in the car

That seems to help except she takes the bag and throws it twice . And I’m
Not sure if my daughters lap top is in it .

I tell her no and go to the grab the bag , she takes it and puts it in the car .

This is by no means the worst meltdown we have had or even a big deal in the grand scheme of things . It’s just added stress added frustration and extra time and steps that need to be taken .

It can be exhausting though . For us and for her . I am already questioning my decision to venture out alone . I will be traveling back ferry and shuttle alone just me and her .

I don’t know if she will understand that the girls and backpack are staying .

The shuttle ran late and missed the ferry

The next one is a freight ferry with limited passengers , I don’t know what that means but we are getting on .

On ferry to Martha’s Vineyard

I know I am blessed I am with two Of my beautiful daughters on a beautiful day , headed the the vineyard . I just wished things could be simple sometimes .

I am already getting anxiety about the return trip . But we are on route too late for doubts now .

The uncertainty of it all

The uncertainty of it all

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.

Alyssa December 96

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.

Perfectly , imperfect

My Husband 

I love him with all my heart 

Every fiber of my being 

I have loved Him since I was 16 years old

I don’t really know anything else 

And to be honest sometimes I don’t even like him. 

We don’t see eye to eye on many things

We fight a lot

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 

Love matters 

Family matters 

My daughters progress matters and is enough 

Merry Christmas

More than just a Grandmother

Watching my daughter sit on your lap as you sit at the table seems like the most natural thing in the world .

Except sometimes it’s not

A nana sitting with her grand baby is something you can take for granted .

Sometimes you have to fight for it . Like when that child has autism , and doesn’t like to be touched , hugged or snuggled , or when she does but it’s on her time and her own terms.

You fought for her . You took to the time to wait until she was ready . You loved her so much!

You learned and you were patient

You always believed in her and didn’t care what any of the experts said

You sat with me at night and told me that everything would be okay, that she was so smart and she would talk , you just knew it in your heart. I needed to hear it whether it was true or not

There was a time that she only allowed me, you and her brother to touch her . She wouldn’t let anyone else in . You were the only other adult besides me that could reach her , that could comfort her .

You were the one who got her to eat macaroni and cheese when for months the only food she ate was nutrigrain bars and cheese doodles.

You sat here with me when she started therapy and would scream through her sessions , us both keeping the other one from stopping the much needed help ,

You were relentless with your love and your bond with her was amazing and so special .

We didn’t think she would ever use a fork or drink out of a cup , you were the one who got her to take a sip the first time it was Pepsi out of your cup while she was sitting on your lap .

We couldn’t believe it and laughed because of course she would drink Pepsi out of a cup !

You never treated her any different and loved her for who she was. You always acknowledged her and made damn sure everyone else did too.

Some might say that you were just being a grandmother, but it went far and above that.

You were there when she needed you, when I needed you and your son needed you.

You made sure that her brother also had plenty of love and attention, and gave him lots of extra nana time and treats too of course. You saw how hard it was for all of us.

You made sure she was included whether she was aware or not . You never discounted her feelings or her potential.

Your bond with her was so strong , and it made me so happy . To see someone love your little girl the way you do , is an amazing feeling. It helped me so much during this time .

I was a 23 year old mom with two kids trying to make sense of her child being diagnosed with autism , during a time there was no awareness and no understanding .

You made me stronger , I felt supported and was able to fight for her and to be her voice

A time when others thought she was spoiled and had no idea the difficulties we were face with

And then you got sick

You were 48 years old and they diagnosed you with pancreas cancer and gave you 6 months to live . We were devastated .

We were again faced with an unjust diagnosis . This one even worse than the last.
It seemed so unfair – a person who is so selfless and loves so much .

Alyssa was now 5 years old and had made so many gains but still had lots of challenges .You were a mom to four and a nana to 5 grandchildren , that you adored and who equally adored you .

You accepted everyone. You loved your grand babies with everything you had. You were getting robbed and they were too . You fought with everything you had and battled for almost two years .

You got to see me marry your son , and you were glowing , looking more radiant than the bride. I didn’t mind though , I never saw you look more beautiful and happy .

You also got to witness another grandchild be born and that made you over the moon.

I am so blessed to have known you and have been loved by you . My children were doubly blessed , you spoiled them and loved unconditionally.

You helped me though what was the hardest time of my life and to say thank you seems so small.

I wouldn’t have been able to do it without you. The love and understanding you gave our family meant everything. You never gave yourself enough credit , your impact on us was tremendous.

You are more missed then you could ever know.

Our lives will forever have a void .

You always said our girl will talk and although she is still nonverbal she has words. I can hear your voice saying I told you , I knew she would .

Can you hear her from where you are ?

Can you see her and all the progress she has made ..

I choose to believe you can , that you are looking down on her and smiling and whispering, I just knew it .

I am so incredibly grateful to have known you. For all the love you gave , the kindness and grace you showed and the best meals I have ever had . You took care of us in many ways.

Family support is everything . We Have been incredibly blessed with it , It makes such a difference and lightens the load we carry so much.

I hope you know what a special person you were and how much you were loved.

Dedicated to Louise McIsaac , Nana and mother extraordinaire .

Grateful heart

Tonight I go to bed With a grateful heart .

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 .

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

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 .