autism · confessions · Down syndrome

I’m tired.

I remember during finals week in college thinking, “Man, a coma would be AWESOME right now!” I didn’t think that level of tired even existed…nor did I ever think I could be MORE tired.

Oh little college girl, you knew nothing of tired.

These last couple of weeks have been brutal. Hurricane. No power. Power. Inside storm shower. Cleaning carpets and couch. Again. Again. Again. Nor’easter. Autism. Pneumonia. Bronchitis. Weird periods.  Loud chewing.

Yesterday Abby had another ENT visit. This doctor seems to think that her hearing loss is probably congenital.


Loud Yo Gabba Gabba forever.

Last night the wind howled. I stayed up filling out 32 pages of paperwork for Abby’s evals, and even after they were finished I could not sleep.  Abby woke up coughing about 4,000 times. In between quieting her, I could not quiet my thoughts. The worries that I can only hear when my brain is quiet. Casey was up at 4 for the day.  Lance got up at six to get them ready for Casey’s neurology appointment in Providence.

This morning had a marathon evaluations and IFSP meeting. It lasted over 3 hours. Her fine motor skills are AT AGE LEVEL. Bam. Take that. Everything else, well, she’s got Down syndrome. Ain’t no thang (can I say that? Does it work? No. Probably not).  IFSP’s are a lot like IEPs. You talk about everything your child can’t do. They just can’t emphasize the diagnosis enough.

During the meeting, I felt a very large zit on the side of my neck. Before I realized what I was doing, I scratched that beyotch off. A second later I had a large stream up blood running down my neck. Awesome job, Lexo.

As soon as that was over, I went to lay on the couch for a minute when the phone rang.

Casey’s school. He’d been freaking out for TWO HOURS and they didn’t know what to do. Nothing was working. Feeling as though I’ve already been beaten almost to death with a hammer, I just told them to hang tight. I scooped up Abby and went to get him.

The teacher and the principal were in her office with Casey. He had thrown his shoes against the walls and was curled up in a ball on a chair weeping bitterly. I wanted to be mad at him. But I knew that his freakout was because his day didn’t go as scheduled. Can’t mess with that part of his autism. He can’t just go to school during math instead of at the beginning and have it be okay.

I can’t reward the behavior, either (he tried to fire the teacher, which is just a tad hilarious). And punishment for Casey at home is punishment for me.

His brothers just got home, and I now have to go normal mother things like homework and snack and love and affection.

I’d kill to only be pissed off right now about having to do homework with my kids or the struggles to get them to do anything around the house. I’d love to just be worried about what is for dinner and getting the house clean. I’d love to be bored at some sport practice or stressed out to making it to both dance and karate on time.

And it’s only now that I draw my knees into the fetal position. I’ve given every last piece of me to the stresses of this day I have nothing left to give. My typical kids get so much less of me than they deserve, and I don’t know how to balance that. I feel like I’ve been surviving for so long that my kids won’t know how to just live. I hate that.

I’m tired. I’m so tired.

18 thoughts on “I’m tired.

  1. Your two "normal" kids will benefit so much from having siblings with disabilities AND seeing you care for them! Even though you feel like you aren't giving them enough, they are becoming more responsible, compassionate, loving, and understanding children simply through living their life. My brother with autism and my mom's love and understanding of him (AND his autism)shaped everything about me and my neuro-typical brother. Everything from our career paths to our interactions with people to our maturity levels are different and better because of him. I feel like I'm able to really see WHY my mom did things the way she did as I work with students with autism every day, and without that background I wouldn't be the kind of teacher OR person I am. You are doing a great job, and Peyton and Carter will know and appreciate that one day…even if sometimes you go through rough spots!

  2. Where in Rhode Island are you? My sister lives in Barrington. I understand juggling the parenting to 2 different kinds of kids. My 12 yr old son is super smart and I always feel like he gets the short end (if any) of the stick; where my daughter is 10 and has Down syndrome (nuf said). I am enjoying your blog. You have a great sense of humor and that always helps!!

  3. Praying for you Lexi. Deep breathes. Find time for yourself. Call for support. Try (easier said than done) to get some sleep. Praying praying praying!

  4. Praying for you Lexi!!!!! You need some quiet time. i just found out after 5 years that SC has a someone that will come out up to three hours a day and help care for her…but it has to be doing something with dressing, bathing,feeding..Maybe check out and see if they have something like that up there..i sooooo wish i would of had something like that years ago…little too late to set that up now..i tried to set it up for help with Avery while she was in a spica cast..guess when they totally get it all done…one week before her cast comes off..Well thanks but forget it! But will def be praying for you….sometimes it is very exhausting..i was just thinking this today tooo…

  5. Sending you hugs, Lexi, and all the extra mama strength I have. I read an essay once called "Chosen Mothers." The one I read was in the context of moms whose children have cancer (as my son did), but I have seen it also about moms of children with special needs. The crux of it is that only the most speial moms, the strongest moms, get special kids. I don't know if I believe the whole "everything happens for a reason" and all of the other religious sayings people seem to throw out when someone is going through something hard, BUT I do believe we are stronger than we realize.

  6. You made me cry. You have absolutely no idea how much I needed to hear this. I need to print it out to remind me that there will be good for them in this situation as well. They are such good kids. And you're right, I don't think that's in spite of their siblings. Thank you for taking the time to tell me this. I needed it so much. SO SO MUCH!

  7. We had that in Arlington. It was awesome. We're working to get respite here, too, but it's not looking good. We'll see though!I hope you get it! With everything you guys have been through this year, you could use some down time yourself.

  8. I hope today was better and Casey had a better day. I wish I could say something to change things. I love your honesty…thank you for sharing it with us.

  9. I don't even know what to say here because you sound so beaten. And that just makes me really sad.But.Loud Yo-Gabba-Gabba forever did make me smile.xox big love to you

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