Ace has been having a heck of a time lately. I’ve posted before about my concerns about him and his “fits” or tantrums, and I’ve worried for a very long time. We briefly pursued OT but stopped when the therapist acted like there was nothing wrong with him and made me feel foolish for being there, and then we started getting billed hundreds of dollars for what I had thought was covered by insurance and other programs.
We recently got a spot in Speech Therapy for him, which is pretty much a joke because his communication is fine (as confirmed by the Speech Therapist), but it’s free and she comes to our house, so I figured why not? And it turns out she is knowledgeable about Sensory Processing Disorder (SPD) so she’s actually been great to have coming to see him and it’s holding us over in the meantime as we figure out where to go from here.
There had been a waiting list for a well known and highly sought after OT in the area that we were supposedly put on back in October. I mentioned to A-M, the EI Care Coordinator, that I have not heard a single word from them since. She found out they were waiting for me to return paperwork to them. I had thought it was stuff to bring to the first appointment, so I never did it. UGH! I finally got that all sent today. I just hope that I was on the list the whole time, and not that I never got on the list until the paperwork is received. It was a six to eight month wait back in October.
Anyhow, the point of the post…
I am worried about Ace. I am, but I’m not, as if that makes any sense. He has this tantrums, and they are BAD. People tell me it’s normal, especially for an 18-month old. But there is something not right about them, and honestly, he’s been having them since before he could even crawl, so this isn’t just an 18-month old thing. The people who have told me they are normal either haven’t seen them, or only saw a snippet, and not a true, drawn out, full blown meltdown.
It has gotten really bad lately, though we did discover today he has SIX teeth coming in. But Nate has four coming himself in and he doesn’t react nearly the way Ace does.
Let me go back to Tuesday, where this really started coming to a head so it makes more sense.
I had put Ace and Nate down for naps and went and got showered and stuff. He never fell asleep and was playing/whining in his bed, so I went to get him. I sat on the recliner with him and he fell asleep on my chest for about 30 minutes when the nanny arrived.
I had to work, so I got up, which woke him. But passing him off to the nanny is what set him off. He was like a wildcat. For almost 30 minutes he carried on like we were trying to pull his toenails off with pliers. He finally just started to settle from me holding him, but then I made the fatal mistake of laying him down to change his diaper and all hell broke loose and we got another 15-20 minutes of flailing, screaming fit out of him. That one ended when we got him to eat a cracker. He followed that with half a banana and then an orange – he ate like he was starving to death. Not sure if the hunger was causing the fit, or the fit caused the hunger.
Anyhow, that night, he went to bed ok, but woke at 10 pm and sounded pretty sad, so I went to get him. BIG mistake. We had a 2 HOUR fit of him screaming, kicking, hitting, HEAD BUTTING me and just flopping, flailing FREAKING out. I held him, rocked him, bear hugged, shushed, tried to get his attention (he wouldn’t even look at me, and it wasn’t a night terror), I put him down, picked him up, sang to him, stroked him, tried to put him in his bed and lay next to him and hold his hand (which he normally loves), I got so desperate I tried to swaddle him… nothing. He would flop and flail like I was KILLING him if I so much as looked at him, so I ended up giving him some Ibuprofen (figuring maybe his cold was getting the best of him) and putting him in his crib to fuss himself out. He settled pretty quickly on his own after that and went to sleep, until 6 am (just 6 hours later) and he woke and had another hour long fit of the same caliber.
At that point, I called the pediatrician thinking maybe he had an ear infection, but nothing. We did see the six teeth coming in, so I started him on Tylenol every 4 hours, but he’s still having these major meltdowns. One of the worst parts is if you try to pick him up, he throws himself backwards so hard he’s had many near-misses of cracking his head on the counter, floor, etc. Tonight at the mall, he went into meltdown after flat out refusing to eat ANYTHING and throwing (hard and far) everything we gave him. At one point, he shook his head no for several minutes straight because I tried to offer him a piece of chicken. Silly me, trying to feed my child!
After he refused to eat and it was time to go, I put his shoes on him, which involved him screaming and me pinning him to the chair to get them on, then I set him on the floor to put his little backpack leash on him (which he normally loves to wear) and he started throwing himself all over the floor and then yelling “DONE!” and signing “all done”. I took the backpack off of him and carried him a bit, which helped him settle, then I wrestled him into his stroller, and after he was buckled he settled again.
He had several more tantrums tonight, just 5-10 minute ones, but just as dramatic and severe. I started Googling “brushing” and it turns out I have a brush like they use for it, so we did that in an unofficial way (not arm, arm, back, leg, leg like you are supposed to, but just gentle brushing in general) and he loved it and asked for more and really settled. And he went to bed relatively well after.
Some of my friends who saw video I took of Tuesday afternoon’s tantrum said things like it’s normal, it’s typical 18 month old tantruming, but my heart tels me that these are NOT normal. Even if they are somehow “normal”, I need to help him. It’s like he’s suffering, but he has no idea what he wants/needs. Like Tuesday’s fit with the nanny — he ate like he hadn’t eaten in a week. He has signs for eat, banana, drink, milk, etc but he wasn’t telling me. I asked him if he wanted to eat and he didn’t respond to me. Did he not know that his problem was hunger? I don’t know.
All he ate all day today was about 1/8 of a bagel this morning, some jellied cranberry sauce for lunch and that was IT. I got him to drink some toddler Ensure before bed because he needs food and those fits have to burn a million calories!!
Skip and I are just so stressed right now. We go through feeling sorry/sad for him to just being outright angry with him because he’s like trying to shove a bobcat into a pet carrier when he gets going. And of course Calista suffers from my short fuse as a result, and poor Nate wanders around looking for something to do while I deal with Ace.
I also keep going around in my head thinking there is something WRONG with him, and then I think about how smart, funny and loving he is and think there can’t be anything wrong with him; but of course those things don’t make a person perfect. And if there is something going on with him, how will it affect him down the road? Is he going to be “special needs” or will he “grow out of it”?
Right now, in the midst of some very, very bad days with him, I know in my heart he needs help. This is more than normal toddler tantrums. This is severe at times, and far too frequent to be normal. Not only that, but he is clearly in turmoil when it’s happening. He needs me to help him, but he doesn’t know what he needs, and of course neither do I, so around and around we go.
I really need to get him help, but I just can’t afford the services. I feel stuck. I am going to work on the SPD stuff like brushing and joint compression in the meantime. I talked to the ped and he agreed that it’s not going to hurt anything if he doesn’t have SPD (but I am 99% certain he does). If it’s not going to hurt, might as well try, right? I probably can’t start it in earnest until Monday, as it needs to be done every 2 hours in the beginning, and I have to work this weekend. Skip was doing some brushing on him, and I think he was watching some videos over my shoulder that I was watching on YouTube, so maybe he will do it a little bit this weekend. But on Monday, I need to get serious and see if I can’t help him rewire his little brain and start to deal a little better. We all need him to be able to manage better than he has, and I know he will be so much happier if he’s not having these fits.
My poor, sweet little man.