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.

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.

My forever Valentine

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 Love you more than words could ever say .

October 2001

Unconditional Love

Unconditional Love 

Dear papa, 

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 was always be your girl , 

Love you back ,

Alyssa https://www.facebook.com/443842102762009/posts/1107425349737011/?d=n

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 .

Disconnected

In honor of mental health awareness

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

breakthestigma

talkaboutit

Mentalhealthawareness

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

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 .

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