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 .

Finding Gratitude

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

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

Being a special needs parent is difficult

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

Things are never simple

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

Especially this time of year

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

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

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

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

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

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

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

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

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

First time playing a game , Christmas 2017

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

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

Be grateful for the simple moments

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

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

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

It’s being grateful for the little things

Finding beauty and joy within the chaos .

Early Communication

Communication

When I look down at my daughter with bright green eyes and crazy curly hair , I feel like might heart could burst . At first glance she looks like a typical two year old bopping around the house with her Barney doll , or what ever item or toys she chooses today .

She is smiling and very busy as she wanders through the house exploring , climbing and twirling.

She will even come over to me and stretch her arms out for some bouncing and tickling and she will giggle and it’s the sweetest sound you will ever hear .

She will come to me and she will gesture towards the fridge , you see she has no words , not even any sounds really .

I will offer her her cup and she will either
Happily receive it or throw it if it’s not what she wants . I will try to look at her but she will look away unable to look in my eyes .

The frustration will mount as I ask her what she wants and offer her a choice between two items . She will take one and she will be off again , sitting at the table is not a skill she had acquired and I wonder if she ever will .

I will repeat the words , asking her to make the sounds but it falls on seemingly deaf ears . We thought she was deaf actually for a while she didn’t respond to anything we said , not even her name . She is now responding to that , she will turn her Head and look and then quickly turn away but that is progress so I’ll take it.

She then retrieves her cup and climbs on the couch and the looks over at me . She wants to watch Barney , so I ask her do you want to watch Barney a she looks at me and then at the tv . Can you say Barney ?

She did say this before it was one of her first words but we haven’t heard in over a year .

She looks at me at say can you say Ba ? Say Ba slowly repeating the sound , silently pleading in my Mind for even a sound just one . But no sounds come out and the silence is deafening. She begins to get upset and starts flailing I retreat and put on Barney for her .

Her whole face lights up and she starts bouncing up and down while the songs start her favorite part . She is bouncing and squealing with delight . Just like that she is in her happy place .

After she resets she goes over to the door and slaps it . She wants to go outside , ok let’s get dressed . Easier said then done she does not like clothes and it is like wrestling and alligator to get her dressed .

As we are walking through the kitchen she grabs my hand and pushes it toward the counter ~~ ah she wants bubbles

She loves bubbles ! Can you say bubble ba ba bul . Nothing ~ I like I look deep into her eyes , searching looking for something , anything… She becomes Frustrated and impatient , and starts protesting and letting me know in her own way .. I want bubbles and I want them now . As I grab the bubbles I wonder if she will ever be able to say the words , to communicate .

You see I didn’t hear the words non Verbal autism yet , I didn’t know what that was and had never even heard of non verbal or a child who didn’t learn to talk .

I just longed for communication. For less frustration and more connections .

What I didnt know was she was communicating . This was her very first stage of it .

Pointing , Gesturing , pulling your hand and believe or not slapping things is all part of communication , it is considered nonverbal communication and it is the first step of communication

So as I Scurry outside with the bubbles and try to soldier on having no idea what this journey will bring and if words will even come , I remind myself she is only two she has time .

She will talk right ? Everyone learns to talk. Don’t they ?

She runs and jumps with excitement as I begin to blow bubbles . She has not a care in the world and I can’t help but laugh because she is so cute and her excitement is melting all my worries away at least for the moment

Communication is what we must fight and push for not just talking , as hard of a pill it is to swallow , there are kids who may never Speak .

We have to find a way to give them a voice and teach them to communicate .

Loveneedsnowords

communication is key

Three simple words

I love you

Three simple words

Most of us throw them around Loosely

Take them for granted

We say them when we hang up the phone

When a loved one leaves the house

When we kiss our little one good night

Sometimes out of habit

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

Then you might never hear it

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

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

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

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

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

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

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

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

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

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

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

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

Mask wearing

Alyssa did something unexpected.

We running errands and she was getting crabby in the car

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

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

NO WAY !

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

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

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

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

#unpredictable#keeptrying#autismgreatness

My flower girl

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

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

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

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

The exposure is everything it helps them so much .

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

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

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

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

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

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

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

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

Daddy’s little girl

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

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

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

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

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

#itsbeenalonghardroad

#wewillalwaysbehere

#mylittlegirl

Early intervention days

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

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

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

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

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

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

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

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

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