You’re needed….but you’re tired.

The sun hasn’t come up yet, but the sound of the alarm and your husband shaking your arm wakes you. You’re sick, but you can’t sleep in. You’re needed. You’re tired, but you’re needed. 

It hasn’t even been a restful sleep. You feel as if you just fell asleep from the night full of responding to the “mommy’s” hollering down the halls. You rush to them quickly so they don’t wake the other kids. You change diapers with eyes half shut, restarted the music mobile, pulled the covers so that they are perfectly placed hanging over the bed rail just right. You’ve reassured tired kids “it’s okay” and “shushed” them back to sleep. You hurry back to bed only to startle the dogs who then need to be let out. Thankfully that’s your husband “job” and he always, without fail, will take the dogs down twice from the time of midnight to 4 am. Every single night. 

Here we are again, back at the alarm. You get up, wipe your eyes, throw on slippers and sweatshirts and prepare for the battle of waking kids. You are thankful for your husband who helps. Without him, this job would be impossible. He gets one, you hear whines and complaining from the other room. You climb into your son’s bed. Thanks to Autism, you have to have the SAME routine every morning or it doesn’t work. You grab each hand and begin to do “this little piggy” then you move to the feet. Sing again. You tickle under the chin, under the back of the neck. You slowly encourage him to remove the diaper and go potty. Making sure you use the same language each morning, or it doesn’t work. The clothes are laid out and as you dress him, he smacks you in the face, pokes your eyes and pulls your hair. He coughs in your face, to which you are reminded why you are sick. You get mad, you get hurt. But, sometimes he doesn’t even do this to be mean, he just has zero boundaries and doesn’t quite get that one cannot just touch someone’s face. 

Then, you carry him downstairs, and have breakfast ready. He doesn’t eat. He won’t eat. You are upset because he must have food to get through the day. So, you offer him anything which results in chocolate teddy grahams. You’re desperate. And you feel like a bad mom for not having him eat something healthier – but you just want him to eat. 

Two kids, dressed, fed, teeth brushed coats on, lunches are in backpacks and bus comes at 7. You move to number three. 

Number three is up, you prepare breakfast, put lunches in backpack, study last minute materials for quizzes or tests. Out the door for school by 7:45.

Then, you remember, ABA at our house today. People almost like strangers, in every room of your home, teaching you how to parent, teaching your kid how to be obedient because you’re failing. Not really. But this is what it feels like.

So you go room by room. Make beds, pick up toys, unload dishes, do a load of laundry. Make a cup of coffee and head to work. 8 hours of work. But, always turns into more – because work needs you. 

Therapy and appointments. Daily. Work, daily. School daily. You fit it all in. Grateful you work from home so you can at least allow the ABA to be in your home with the sitters. But feel guilty that you can’t participate because you are needed. At work. 

After 5, you’re tired. It’s been a long day. You have to rush out the door For occupational Therapy. A solid hour. You’re sick, you’re tired. You have kids at home. They need you. But you’re needed here too. 

Home Finally. You are an hour away from bedtime. What a day. Work, therapies. You prepare dinner, do homework, fight with meals. Again, thanks to Autism, it’s meltdown. Oh, and don’t forget to stop every five seconds and fill out your chart which documents every single meltdown that results in injury or self harm behavior. Or every time your child hits or kicks. If you don’t do it – you’re not a good parent. Not really, but this is what it feels like.

During dinner time, something spills on his clothing. This triggers a meltdown and the only way to calm is to walk away and do an instant bath. It’s 7pm – you have only had a cup of coffee today – that you’ve warmed up five times. You’re hungry. You’re tired. 

But you’re needed. 

Bed time. First kid – it’s a two hour ordeal. You know this so you start early. Bath. Pjs. Book. Puzzles.  Because if you try something once, it becomes a routine. Damn Autism. You don’t have time for Autism tonight. You’re tired. You fight with covers, fight with Pjs, lay every single toy and blanket on the bed in the perfect position. You search for the one you that is missing. You know, he can’t sleep without it. You ask for a kiss, a hug. The answer is always no, but you ask anyway, praying one night he will just look at you and let you hug him. You tear up almost every single night. You cry because you love him so much and wish he would just show you in some way he knows it or he loves you too. 

Kid two. Read book, scratch back. Talk about the day because you haven’t really spent any time with him and feel terrible for it. You realize how awesome he is. And feel terrible for not recognizing it all the time. You give hugs and kisses after about 30 minutes and embrace it – because you’re so thankful that he hugs you. God, you love those hugs. 

Kid three. You most of the time, don’t make it to kid three. Hubby has most of the time taken over, So that you can head downstairs, clean up the mess and pack lunches for the next Day. But you sneak in, Scratch her back for a few seconds, tell Her you love her and you’re proud of her and kiss her goodnight. You know she thrives on physical touch and words of affirmation so you try so so hard to do it daily. But most nights you realized you sucked at it. You’re needed, by her, to be an example. So you push through your emotion and feelings of failure and tears – so you can be strong for her. You’re needed – to be strong – even when you’re tired. 

Back Downstairs you go to clean, lunches packed, maybe dinner around 8:30 or 9. You head up the stairs around 10, crap. You left the laundry all over your bed. 

You get yourself ready for bed and catch up on some Emails, organize the day ahead with work, therapies, after school sport. Then to simmer yourself down you participate in mindless Scrolling through Facebook. You’re tired. But you realize you have to do it all again tomorrow and you don’t want to. Shoot, you don’t even get to make it to tomorrow because before that alarm – you will climb out of bed so many times. 

You’re tired. You’re so so tired. You wonder if it will ever get better? You wonder if as the kids grow up, will Autism? Will it become easier? Will You still fight it? Will you still wake up every night? Will you still struggle with therapies, fitting it all in, insurance, bills, IEPs, food intolerances, insomnia. Stress. You’re so so tired. 

But, you close you’re eyes. You close your eyes so you can drift off and not think about how tired you are for just a short time – before you do it all again. 

Just so you know – you’re not alone.

 

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