Special Needs Parenting: Today I Suck at This Job

It started last night.  I had a super productive day, felt pretty good about things.  I picked Ryan up from school and about an hour later I started having cramps, and although I wasn’t feeling too great, got the boys and the dog fed, and then got Ryan and Baxter medicated.  And then the wheels started to wobble.  Baxter gets “hot spots”, patches on his belly that are some sort of contact allergy.  Steroids are helpful for this, but they make him insanely thirsty and give him diarrhea.  He had gotten a steroid shot at the vet in the morning, and some allegry pills, which may also make him thirsty, since they are antihistamines.  In any case, Baxter is not overly concerned about where he uses the bathroom…inside, outside, he doesn’t care, and I have never been able to completely housebreak him.  So I walked him, and locked up, and sat down.  It was 7:04 pm.  At 7:06, he peed.  I cleaned it up.  At 7:10, he had diarrhea.  Twice.  On the carpet.  I cleaned it up. Throughout this, my cramps are getting progressively worse.   I sit back down at 7:24.  At 7:26, Ryan says he is ready for bed.  Now, this does not mean he is going to get in bed and lay down and sleep.  This means he is going to:

  1.  Get tucked in in his bed.
  2. Get out of his bed for a drink.
  3. Get back tucked in his bed.
  4. Get out of of bed to locate Snakie, who got lost during the second tuck in.
  5. Get back in bed for a third tuck in.
  6. At this point, I am to lay down as well (which was good, because by then I was in horrific pain and needed cool and still and quiet…I had taken stuff for my cramps as well by then).
  7. Once I am comfortable (as comfortable as possible), Ryan gets back out of bed and gets in bed with me, which is so NOT what I need…knees and elbows and fidgeting.  I can’t switch beds, he will just go with me.  I can’t go on the couch, because he is “scary” if I leave him alone.  So at this point, I am in tears.  And in pain.  And feeling supremely sorry for myself.  I’m wishing that I could dump him off on someone just for one night, just till I feel better.
  8. After about 20 minutes, he decides I am annoying him and he is going to get back in his own bed.  So I tuck him in his own bed for the fourth time, and get back in bed.
  9. 5 minutes later he is out of bed because now his pull up is wet.  So I get up, change him.  Tuck him in a 5th time.
  10. Get back in bed myself.  I’m still in excruciating pain, nothing I took is helping.
  11. He is now out of bed AGAIN, because Snakie is MIA again (this is exactly why pacifiers have strings or clips of some sort).
  12. Find Snakie, 6th tuck in.
  13. Finally he falls asleep.

Eventually I felt better and was able to sleep.  At dark o’clock, he was back in bed with me, where we dozed and snuggled until about 9:30 this morning.  But I woke up short-tempered, and both child and dog were wound up.  More accidents, more diarrhea, 3 meals before noon for Ryan, 7 tape changes on Snakie.  I wanted to get Ryan (and maybe myself too), out of the apartament for a while, but my finances are precarious right now, gas is limited, my van is possessed by some sort of demon and in need of an exorcism, and even just taking Ryan outside to play is a chore because he needs help playing with others and he dislikes playing alone.  And today I am not feeling well enough to play outside with him.  I tried to take a shower.  While I was doing that he tore up the living room and Bax had 2 more accidents.

And I feel guilty.  Guilty because I don’t feel well enough to play.  Guilty for wishing I had somewhere to take him while I regroup.  Guilty because he is my responsibility and I am impatient with him.  Guilty because this is not his fault.  Guilty because today I am not enough and he doesn’t understand.  Guilty because I’m jealous of parents who can take their kid to a park and he will play nicely with other children.  Jealous of parents who can afford to hire someone to take their children to the park.  Jealous of parents who can afford to take their kids to Peter Piper Pizza and let them eat and blow off steam.  Guilty because I am jealous of parents who can send their child outside to play with minimal supervision.  Guilty because even if I had the money right now to go get my hair cut, or my nails done or have a massage I can’t leave him. Guilty because I resent the fact that I NEVER have just one morning when I can wake up on my own, at my pace, in bed alone.

And over it and under it and through it and around it, I am angry with myself for feeling this way, because there are so many parents out there who would give ANYTHING to have my problems but they don’t because they have lost their child.  This is called Survivor’s Guilt.

That doesn’t make me less exhausted or less guilty or less anything.  It is what it is, and it is something I grapple with on the days when I am a sucky mother.  But I know, too, that I tried today.  I tried last night.  I tucked my restless child in to bed 6 times.  I have fixed Snakie.  Cleaned up after Bax.  Fed my kids.  And I know they know I’m trying.

I don’t want y’all to be all sad about this…I want those of you in my shoes to know that you are not alone on the days you feel like you suck at whatever you are doing.  Also, I want to just say that those of you who know someone in my shoes, here is how you can help:

  1.  Show up with coffee
  2. Call and see if you can schedule a play date.
  3. I probably wouldn’t saddle you with taking Ryan to the park because he is an escape artist, but I might go with you and your child.
  4. Bring food over.
  5. Gift cards are so welcome…for fast food, for books, Google play, Visa gift cards…anything we might use to just pop out for an afternoon, or a couple hours
  6. Offer to stay with Ryan at my place so I could go run some errands.

Better yet, don’t offer, just do it, because most folks in my shoes don’t accept offers of help easily, but it is kind of hard to turn down help when it is on our doorstep.

***This is important:  I am aware of respite care.  I have been denied this service by several agencies, so this far it is not an option for us.

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