You can lose your ability to cope and even to care
It is can push you to the point that you can barely get out of bed , or shower. It can literally paralyze you. Except when your a mom, especially a mom to a child with special needs you don’t have that luxury. You have to get up and at least do the bare minimum to keep everyone safe and cared for.
It takes all your mental energy. At times you don’t even know why you feel this way. You become numb and everything feels so heavy. You walk through the motions of your day with no feeling. Sometimes you don’t even realize what an unhealthy place you are in. You will Silently beg for something to make it stop. It is hell On Earth
Things feel so big . You feel so weak so tired, mentally tired, and you feel so powerless to fight it, to make it stop. You feel like you are losing control and you begin lose interest in the things you love, that being you joy.
Everyone’s bottom feels different. There comes a point where you can’t do it alone , you need help to pull you out of the darkness.
Asking for help can be so hard, it can feel so defeating.
We have this unrealistic pressure on us to be strong, to keep up. Asking for help doesn’t make you weak it actually takes incredible strength.
It is difficult to put your vulnerabilities out there, to risk rejection, judgement , and feelings of inadequacy. It takes a lot to have the courage to put aside your self doubt and seek help.
Make the phone call, say it out loud and give yourself grace. Always remember how important you are . You matter
We all need a little help sometimes and that’s okay. We all need love and to allow ourselves to heal. Admitting that and letting out guard down is what takes the most strength.
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 .
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 .
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 .