DEFEATED

am maddened. I am defeated. We found out my middle child, Bean has SPD about six months ago. We started therapy about four months and have a great OT. She has walked me through everything and even gave me her cell phone for “emergencies”.

We have a ton of activities to do at home and see her every other week.  Bean has mild SPD but in my mind it’s so obvious. I haven’t told any family besides my sister and only a handful of friends. Everyone else just makes comments like “she’s a bruiser, she’s a tough cookie, wow she’s active!” or my favorite “doesn’t she ever get hurt?”  I’ve been kind of suffering in silence since she was born.  Again, my OT is my life saver.

Like many of you, I knew she was different. As a baby she cried all the time but when she wasn’t crying she was beaming like the happiest baby alive. She had two moods, MAD and HAPPY. She still has not slept through the night for more than three consecutive nights and she is three.  When she was a baby she’d sleep in the crook of my arm face down and have to be moving.  She was always very aggressive.  She never seemed to get hurt.  She “was too little” to do many simple things like go down the stairs or pick up a blanket.  Now I know she’s just a sensory seeker.  She’s clumsy and falls constantly.  She loves to play with her food, touch everything, spin, hang upside down for hours, and lay on her brother.  After our discovery of SPD and work with the OT I actually love her more.  I see the wonderful Bean inside the one I normally saw.  It used to be I was always on edge with her, always waiting for her to do something else destructive or hurtful.  I was always mad at her.  I never understood her.  I hated myself for feeling that way about my child.

I am exhausted.  I am overwhelmed.  I was told recently by Bean’s OT she needs at LEAST 30 mins of heavy work twice a day. Not including the therapeutic listening. “Wow” was all I could tell her when she told me this.  That’s a lot of time.  She goes to school now two mornings a week besides outside activities.   Now, I don’t know about everyone else, but it’s really hard to make my three year old do something that she doesn’t want to do. I’ve tried to make the therapy fun, a game, even rewarded with treats. It’s like I’m asking her to walk through coals (wait, she’d probably like that!).  Plus, it’s really tough to do it with my 19 mo old and 4 year old watching or wanting to do it themselves.  I feel overwhelmed having to do all of this on my own, keep a house (I’m a stay at home mom), and take care of my other children.

The problem is I see a difference when we have the time to do the appropriate activities.  I’m finally getting to read her better and see what she needs when she needs it.  The fact I recognize her need is frustrating (if I’m unable to give it to her) and wonderful (when I do it, she calms).  Some days she needs some heavy work or pressure every 30 mins to hour.  Some days she is good for hours.  One day I held her upside down for 20 mins (no joke) straight.  I hate the unpredictability, the uncertainty.  “Does she need some deep pressure, or heavy lifting?  Does she need something calming like her blanket and silly putty.  Or is she just acting out because she is three!”.  I get annoyed when her siblings are needing something when I’m trying to do work with her.  I feel like I’m always yelling at someone for something silly because I’m stressed that I need to get this therapy in or the world will end.

I am tired.  I am alone.  Bean doesn’t sleep.  Ok, she sleeps on average 9 1/2 hours in a 24 hr period.  I know because I’ve been keeping a sleep journal off & on for 6 months.  We’ve tried routine which is invaluable but when something messes with that we have hell to pay.  We have tried melatonin and that helps knock her out but she still wakes up any time after 1am (lately it’s been 4am). Sometimes for an hour or two, sometimes for the day. Maybe she will take a nap, most likely not. Before melatonin it would be a screaming fit for two – three hours for her to fall asleep. She wants us to lay with her, there are monsters in her room, she is not tired – sound familiar?  But this sleep thing isn’t unusual.  This has been since she was born.

I have close friends who know about my situation and listen.  But those same people try to make me feel better by minimizing my situation.  “I must have a sensory kid too – she doesn’t like fleece pjs”  or “I have the same thing, my daughter doesn’t like yogurt consistencies”.  OK, the difference is you can put your kid in cotton pjs or not give your kid soft foods.  If I don’t do this heavy work several times a day she explodes.  We call it “raging”.  Sad we have a name for it!  Comments like this from my friends make me not want to talk about the struggles with them.  As a newbie all I want to do is talk about it and make sense of it.  I actually really enjoyed the post (sorry I can’t remember the name) about how moms spend every waking moment researching and beating this stuff to death.  Their lives revolve around this.  I felt like I was reading about me.

I’m optimistic.  I’m lucky.  At least what I have to keep thinking.  It could be worse – it always could be worse.   It’s getting better – really.  I wouldn’t have wanted to read what I would have written two months ago.  At that point I was grasping at straws, not doing therapy as much as needed and was just angry.  Now we’re in a zone.  I got a positive report from the psychologist and the OT.  First time ever!!  I almost cried.  We are getting there!  SO, thank you all for just being there and giving me somewhere I can feel support.  This network has helped me in so many ways and I truly feel it has helped me be a better mom.  It’s already getting better with the tools I’ve gotten from other people on the network.