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 .

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.