Our family's journey with autism. An honest view into living with severe autism, the heartache ,the joy and everything in between. Join us on this adventure of autism, love, and chaos .
I am sitting here reflecting on this holiday season, a little hazy from my Christmas nap . My husband is cooking dinner , my niece is playing with toys on the floor , my son is out and about , my teenage daughters have retreated to their room , my sister is outside in the car getting a much needed break and Alyssa is in my room on her Ipad. I feel tired but relaxed .
I realize I haven’t felt this way in weeks . All the hustle and bustle of Christmas behind me . These past few weeks Alyssa has been struggling . Lots of behaviors , floor drops , rolling , throwing herself down , some aggression, sleep issues , it breaks my heart to see her like this . Her legs are covered in bruises from so much flopping .
Yesterday everything came to head and the mental exhaustion of the last few weeks hit me like a ton of bricks . I had no Christmas spirit and didn’t even want to even get out of bed .
I had to push my way through the day but was feeling lost and disconnected . We had a new psych consult for Alyssa and that didn’t help. Explaining non verbal , and her receptive language , the history of her autism , Not the best day for it .
The past two Chrismas’ there has been such a turn around of awareness and engagement . She is really getting it . This year I wasn’t so sure how it would go . The days leading up to Christmas she has been so off , Hyper Viligant anxious ,and not sleeping .
She did amazing ! It’s truly the best gift I could have . Watching her open gifts with a genuine smile , I felt like my heart could burst . My eyes were filling up with tears and I felt all the weight lift right off of me .
She not only was she happy but she was stopping to show her gift and pose for a picture . Everytime . She does not pose for pictures or smile on command .
She was beaming and was beyond beautiful!
Autism is funny like that all the struggles and the uphill battles and then things can turn around so fast and give you joy and beauty .
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
Such a simple thing to take a picture with something Festive on . I see it everytime I go on Facebook or Instagram. Some matching some are not , but most are festive .
This is something that is so hard for Alyssa . Anything different and any change is so hard for her . Even something as simple as wearing different or new clothes .
I got her a grinch shirt , I know she probably wouldn’t wear it . Most of Christmas Eve she stayed in my room . She was on her IPad and that’s her happy place . I didn’t push her , I just let her be .
When she came out to eat I showed her the shirt and asked if she would wear it later . She nodded and signed yes . And I smiled and said okay later . She says yes to a majority of things , it doesn’t alway mean yes . Still She didn’t say no , which she 100 percent knows .
After she ate she agreed to put the grinch shirt on . She took of her shirt and put it on but she became hesitant . I could tell she really wanted to , but as soon as it went on she became irritable .
She immediately started pulling at it . She was lifting it up and getting upset .
I asked if she could keep it on just for the picture . She reluctantly went along , I wouldn’t say happily but she tried .
It takes so much for her do new things . Her anxiety spikes and she becomes stressed . Even at things that are so minor to us .
I have learned to not push her too hard . I make the conscious decision to let her be , most of the time . I still try but I back off , and follow her lead .
Just her willingness to try , and her desire to make me happy warms my heart . It’s hard that we can’t always do the holiday things that other people do. It makes me sad and sometimes frustrates me . At times it makes me envious of others , that get to seemingly enjoy all the Christmas activities with ease.
Tonight , I chose to smile and be grateful for what I have . It may not always be the easiest but it’s means so much when things do come together . I love my family and are so grateful for them , especially my children . I take her effort and the pictures while certainly not perfect pictures , I know what goes into to them and that means so much more .
Merry Christmas everyone , However you choose to celebrate may you feel the love .
This morning I woke up to my beautiful girl inches from my face . It was 645 am and she was still awake from last night . My plan to keep her on schedule is not off to a good start .
She fell asleep around 730 pm and and I thought maybe she will sleep most of the night . Rookie move
She did not she woke up around 10 and stayed up .
She clearly wanted something and was patiently waiting for me to open my eyes and figure it out .
I tried to coax her back to bed but she was not having it. Hugs and kisses , she was happy to give them but wasn’t what she wanted .
I get the look 👀. Figure out what I want
I see she’s tired and I am on the couch and I am looking at her asking what she wants and she just looks at me . This is where she starts to get frustrated and it is too early for floor dropping and screaming , I am wracking my sleep hazed brain for a solution .
I look at my bedroom room door where behind it lays my husband, sleeping like a baby . I look at Alyssa and she is also glancing at the door .
💡
It finally dawns on me . She wants to lay down in my room and go to sleep in my bed . She probably can’t fall asleep and has been trying for hours. So I ask her do you want to go in my room and she nods yes . I tell her do ahead , go tell Daddy.
She goes in and he tries to get her to lay with him and she laughing and being silly . He is trying to amuse her and send her on her way . It’s not happening .
She wants to lay in our bed by herself . He begrudgingly got up and gave her the bed .
He was leaving the room and she yelled blankie . Blankie. He had to go back and tuck her in , snug as bug . She was giggling as she rolled over and settled in and fell asleep .
I am grateful for that laugh , it lights up my whole world .
I don’t know if she will wake up in time for helping with the cooking and the baking but she needs sleep and to be in a good mood for that to go over well . We may just do some of that tomorrow .
Most important lesson I have learned is we have to be flexible and not have too many expectations .
I won’t lie sometimes I don’t follow my own advice . It’s hard to let go of that but things do tend go smoother when I do .
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 .
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😊
Autism adventures with Alyssa 