He doesn’t think the the things I think are important matter .
And frankly it irritates me
Can’t he pretend to go along
He will humor me but still , not happily
This was going to be the year of matching Christmas pajamas , grinch ones specifically
I am on my phone trying to find them very unsuccessfully.
He thinks it silly it doesn’t matter
We still don’t have a tree he could care less
We are finishing up our breakfast and he signals the waitress to come to our table . I look up and he gives her a 2O dollar bill and says I want to pay for the guys breakfast over there .
I look around perplexed and see and elderly gentleman with a cowboy hat on siting alone eating . He goes to tell the waitress don’t tell him who paid .
We get up and walk out and I check out this guy as I walk by looking for a clue or some kind of recognition . I smile through my mask and mumble a platitude as we pass by .
We get in the car and I say that’s was nice and he says , I overheard him talking to the waitress and he was talking about how he lost his home and his business this year . So he paid for his breakfast , no big deal.
While I was busy worrying about matching pajamas oblivious to anything else
And why ; my daughter with special needs will not wear them
I want the picture perfect Christmas things , even though I’ll never have them
We are busy and messy and Stressed
Our house is loud and chaotic
We are literally the gridwalds
My daughter will fight me on decorations because she doesn’t like change
We can’t have the picture perfect things
Our life just isn’t set up for it
And it’s hard to give that up
I want some kind of normalcy
Yes things have progressed over the years
I know in my heart that is what matters
But the progress is so painstakingly slow
My husband did this gesture out of the kindness of his heart
Not for credit . Not for a picture or a Facebook post
This is the true meaning of Christmas: it’s all the love you’re surrounded with , it’s the blessing your life brings you . It’s not trying to have what other families have , or trying to get that perfect looking picture to post
My daughter is 24 years Autisic,and non verbal
She has willing watched Christmas movies with us for the first time . She rode the polar express train and was so happy to see Santa . She is aware he is bringing her a present . She has picked presents for herself off of Amazon.
This is our Christmas miracle
Today my husband opened my eyes to what matters . Matching pajamas don’t matter
It has been a trying couple of weeks. Lots of behaviors have resurfaced , flipping , dropping , screaming and some aggression . While things can still be challenging at times, we have learned to navigate pretty well.
We definitely still have episodes from time to time , bad mornings and bad days. If she gets triggered and her anxiety spikes it can be difficult.
We have not had a couple of hard weeks in a row for long time . I honestly can’t even remember when.
I have been talking about Christmas and she wants no part of it . If I mention the tree or presents , she says no thank you , and makes it clear she doesn’t want to hear about it .
It’s a fine line as I want to prepare for what’s coming but sometimes it causes a lot of anxiety for her .
It is so hard when she doesn’t really have an interest in anything , but she likes opening presents.
The past two years she has had much more of an understanding with more awareness during the Christmas season . Last year she was able to pick stuff for her list on amazon and the year before that circled stuff in the Walmart catalog , which was the first time ever.
Which I thought was great . It is so funny to see what she picks .
Ther other day I got her to picked stuff off amazon , she knows exactly what she likes and what she doesn’t . She will scroll right by certain stuff and stop and point at others.
She gets it and that simple thing means so much because for 20 years she couldn’t show us , and didn’t seem to have any awareness of it .
I couldn’t figure out why she was getting upset when I mentioned it . She usually gets happy about it .
I was wondering if she had lost it . If she was Just not interested in it anymore. I was honestly getting a little sad about . We only have only had this for 2 years . It would cruel to take away so soon .
And yes I know I am making this about me . I love Christmas and I want to share that joy with her . I love that she gets it and we can “talk “ about it .
Autism has already stolen too many things , and I didn’t want to give up this . It is already hard to get her through the changes as it is .
Tonight when I brought it up she smiled and nodded yes . I talked about decorating the tree and watching a Christmas movie .
She doesn’t really watch movies but last year we got her too watch a couple Christmas ones and she watched the Dora movie too .
It is hard for her to follow along so I try to keep her engaged as much as I can . Well she went over and sat on the couch and I think she thought I meant now . I said you want to watch a movie and she pointed to the TV and signed yes.
We put on the Grinch , the cartoon version and I didn’t realize there was a new one , let alone it was an hour and half as apposed to 30 minutes .
She did great !! She laughed and smiled it warmed my heart . I was pointed out things and asking her what things were and she was repeating and identifying them .
She started saying something over and over and I was trying to listen to figure it out . She was saying Cindy loo hoo , over and over to herself . It was so cute. She was repeating tons of words from the movie and she was so happy !!
I am so grateful she is back to herself . I am so grateful she was able to experience this . These are the things that before autism was in Our life were assumed .
I assumed my kids would snuggle on the couch and watch Christmas movies , I assumed they would sit at the table and make Christmas lists , I assumed they would know who Santa is
There is so many things we assume we will have and that is not always the case . Many people never get to have these , or in her case have to wait 2O years to experience them .
It makes it so much sweeter when it happens .
I appreciate this moment , this experience . Even though it is such a simple thing it brought me so much happiness
It is a gift .
We have to keep trying and hoping . It’s never too late . We have to find the joy and celebrate the holidays in our own way .
Tonight Alyssa for the first time ever played a game . She has never been able to understand the concept. Taking turns alone is a difficult concept . We played Sesame Street memory , it was me her and her sister . She took turns and followed the rules . I know it is a very simple game geared for preschoolers , but it is a start , and it is another first for her . Merry Christmas !
We hope everyone had a Happy Thanksgiving ! I was just thinking about how wonderful it was to have Alyssa involved and for her to sit down and eat with us .She had turkey stuffing and gravy .., yes gravy .
This wasn’t always the way . There was a time where she only ate two or three different things in total . For many years she wouldn’t sit and eat , she would just bop Around the house while we ate.
As she got older she would isolate to an empty room and entertain her self . This year we had the iPad with the prologue2go app out on the table . This is huge for her . Although it wasn’t without some behaviors . She got really upset and attempted to bite herself which is not a common behavior for her . She got her self very worked up and threw a roll of paper towels at her sister . ( who was helping her with making deserts ) She used her talker to say sorry .
I helped her calm down and she was able to settle down .
She actually peeled potatoes , poured and mixed ingredients . Spread cool whip and sprinkled chocolate chips . She was an active participant in the holiday . After dinner we put on the grinch and she joined us in the living room and watched it with us . Which is another huge step for her .
With Halloween coming up there has been a lot of debate about trick or treating . I have seen a lot of really positive posts making people aware of all different styles of communication and different expectations for trick or treaters. There have also been a lot of negative posts regarding ages ect . I just want to point how difficult these special occasions are for children with special needs and their parents .
It doesn’t matter where you fall on the spectrum or whether there are other types of special needs . There are so many challenges to over come . Just getting a costume on , motor planning to go up and down stairs , understanding , waiting , saying please and thank you ( if they are even able too ) making sense of walking around in the dark . We as parents feel compelled to have them try , to let them be a part of this milestone and not be left out , to hopefully be excited about something . I’m our experience it has taken a long time but somewhere along the way she started to get it.
We have to be aware of her costume , she wore the same one for many years . She doesn’t like most of the accessories, wigs , hat make up ect . She does however like candy , and she understands that this is part of the process . Over time repetition of doing this every year she does great ! This is why we do this and keep trying .
Two years ago I decided I would keep her home . After all she is getting older , her younger siblings are getting older and honestly I am not the biggest Halloween fan . And frankly she wouldn’t know ; It’s not like she knows what day Halloween is . Well I was wrong she was watching her sisters get ready . She was smiling and laughing , getting excited . She 100 percent knew what was going on . I Hadn’t gotten her a costume! You can not take out a 20 year old with no costume ~ trust me . I headed to the closet to find -something . Thankfully my other daughters do dance and I came up with something real quick
. Now it wasn’t really a costume so I had to add something else . I tried to put a little make up on her. This is a big no no for her . She resisted a little but let me do it , she was mostly laughing . It was like she knew somehow .
I guess my point is no matter the age , you don’t what it takes a person with special needs to get to this place . Age is just a number and is irrelevant in the special needs world . She was way more aware than I have her her credit for. Kudos to all the moms that are going through the hard parts right now. It will get easier . Look how happy she was😊
Wow Alyssa just did something pretty amazing for her . She allowed me to put her costume in her school bag for tomorrow’s Halloween party at school .
Doesn’t sound so amazing does it ?
Nothing goes in this girls bag . Her lunch box and a communication notebook . That’s it .. She checks before we leave and even inspects her lunch box everyday before we she goes out to the van . She will not under any circumstances allow anything else put in her bag . She is extremely rigid when it comes to this. She does not understand and has a really hard time allowing any kind of change . She is really possessive of her belongings and especially her bag . I think party it’s because she has little control over her life and her environment . She also just doesn’t understand and wants things to be where they belong or where she thinks they belong. I think that part of what helped is using the speech app ( Proloquo2Go) and showing her and talking about Halloween , trick or treating and costumes . I can honestly say I did not think she would allow it in her bag , she whined and complained and said no . Then she got the witches hat and brought over to me to put in her bag ~ and then got the cape and brought it to me .. I wasn’t going to push my luck I was happy with just the hat .
I have to admit I have been feeling defeated about using the speech device . She is not progressing how I had hoped . She will use it for activities with me but will not make choices or use it independently. ( although she did tell me go away when I tried to get her to choose her dinner ) Tonight has given me a little more hope . I know it will help her and I know she can do it . It is just going to take a lot of time and a lot of patience .