My Little Wildcat



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.

8 Replies to “My Little Wildcat”

  1. Sommer,

    hang in their babe… I know your research and what you’re doing will eventually help the little guy! just listen to your heart and do what you think is best for you and him, not what other people may suggest or comment on.

  2. Sommer, first of all let me say you’re handling this VERY well. Also, you’re his mom and your instincts are probably right. There are tantrums and there are tantrums. Certainly it’s normal for 18 month old toddlers to tantrum but if you’re the parent, YOU know if it’s beyond normal. Is there something he’s eating or drinking that he might be allergic to? Do you see any kind of pattern? Some kids are much more sensative than others to any kind of change in routine.

    You’ll find the source of this and it sounds like you’re getting close.

  3. Sommer, I haven’t seen the video, but I trust your judgment. Moms (and Dads) do know best…and its not as if you aren’t experienced in the parenting department. It will be interesting to see if the rigorous schedule of brushing helps…I’m sorry you are going through this, but don’t feel like you are over-reacting…you most assuredly aren’t.

    Tara

  4. I only spoke for myself when I said it was normal. I didn’t mean to offend you at all. Around here, it IS normal. Everything you describe in this post. I think we are just trying to comiserate :) For all I know, all 3 of my kids have SPD. I didn’t know what SPD was until my 3rd was born. The 2nd was a doozy. He would have an hour long tantrum if you suggested he try something new. He still does, to an extent. I let everyone talk me out of getting him evaluated… I suck. and I know I couldn’t afford it either. Recently a friend of mine whose son has Autism suggested brushing and swinging to me. And when my 2nd was in the midst of it all, people all around me were skeptical and rolly eyed and “it’s normal” but like you said it’s not, it’s kind of alarming actually. Hope you get him some help or the brushing and compression work for you.

  5. Sommer,

    I am no expert on any type of disorder but I think you are looking in the right direction. SPD sounds like it but I was also thinking about Autism. Like I said, I am no expert and don’t pretend to know anything about either SPD or Autism. But I have known some parents of SPD kids.

    Remember, you are the mom and you are more in tune with what is happening with your kids. If you feel in your soul that something isn’t right, then something probably isn’t. Continue to fight for your son and to figure out what it is. In the long run, you will feel better about yourself, no matter what is or is not diagnosed.

    Ace, Nate, and Calista have a great mom and dad. Keep on looking out for them just as you have been.

    Ron

  6. Okay…first of all, I love reading your posts because although we don’t know each other…we seem to have a lot in common and your posts make me smile. Reading your posts about you IVF journey and fundraisers is what really encouraged me to go down that road as well (I ended up with twins as well, born last year.)
    Now on to this post. Long story tying to be short…when my 5 year old was little, the Ped said that he was “The High End of a Hig Energy Child” and he referred us to EI. When he was around 18 months….the EI Coordinator thought that he had SPD. Aidan qualified for Speech and OT. We had a crummy OT who wasted our time but then got a new one for a few sessions before moving away. She taught us brushing, joint compressions, swinging, laying Aidan on the bed or couch and putting pillows on him and pushing them firmly onto him to give him input.
    I sympathize with all that you have to go through b/c I was the one avoiding friends who invited me out for lunch with their little ones b/c I knew Aidan would meltdown. I attempted it a few times and ended up leaving early just to go pull my car off on the side of the road to cry while he screamed like I was hurting him. I remember giving him Tylenol saying it was for his “teeth coming in” once. He’s head butted me and gave me a bloody nose, etc. He had serious issues with transitioning from one thing to the next & it was as if his world was falling apart if we did something that deviated from what he wanted…even though he didn’t know what he wanted. *Note: Aidan has a 15 month younger sister who sees and learns from him….and copies him to a T.
    I always KNEW something was wrong but I couldn’t quite put my finger on it. I didn’t WANT something to be “wrong” with him….I just wanted to know HOW to help my little man. Life is hard enough as it is nevermind if he has an “issue” that we’re not helping him with.
    Fast forward a little….before Aidan’s 3rd BDay…we took him to see a Neurologist who diagnosed him as having Autism, very mild, hugh functioning. She set us up for a bunch of tests that after having them done….were not covered under insurance. >:[] The tests just determined that he’s not prone to seizures like some Autistic kids are. Then a few weeks later he had his evaluation with the School Board to determine if he qualified for Preschool b/c his EI was ending when he turned 3. The Psychologist said that he had Asperger’s Syndrome (high functioning Autism, very intelligent, lacking socially). >:/ Asperger’s? Lacking socially? This is a child who (on a GOOD DAY) will greet everyone in the restaurant like he’s running for public office……..but then again – he did act a little inappropriate and ackward if we saw other kids at the park. Hmm? She said “like Bill Gates” & I thought, “Cool! My hubby will LOVE that!!” (My hubby is a Computer Programmer/web geek.) She continued with, “He may never get married or have a family & will require 24/7 attention forever.” WHAT? WAS SHE CRAZY? WHO did she evaluate???? Not my boy….he just a few issues…and needs a little something & we just need to find out what that is. Anyway, he DID qualify under the “Autism” diagnosis but I HATED the school they wanted to send him to…I just had a very, very BAD feeling about it. They wanted to put him in a PLACE class…..where there were ALL Special Needs kids….and….not to sound mean….I thought that he should be in an environment with some kids that were not functioning at such a lower level than he was so that he could see a better example and strive to be better. Aidan didn’t have THAT MANY ISSUES….he just needed some tweaking or something….like needing to be rewired…if that makes sense. I remember looking at him while he was sleeping when we were going through all of the diagnosis stuff thinking that I wish I knew what to do to help him. I would cry as I watched him in his peaceful slumber…….thinking that it must be so exhausting for him when he’s going through his tantrums and meltdowns.
    Jump forward again: I DID NOT send him to that school to be in that class. I had him reevaluated once he turned 4 and he qualified for Integrated Place (a mix of some special needs kids and some “typical” kids). We had just moved so he went to a public school that offered the IntPlace class. Aidan had some issues there but overall was loving it….HE was loving it. Daddy and I thought that he acted WORSE there. We noticed his attitude getting worse and he seemed nasty. His teacher didn’t seem like a Special Ed teacher, she was an a**. We ended up having to move AGAIN….just to the next city over but I begged and begged and begged for him to be able to go to a Public Montessory school in that area. Apparently the school is very hard to get into…..anyway, he got in…and let me tell you……it has been a God send. Aidan is doing AWESOME!!!!!! His teacher had the required parent conference with me and said that he is doing great and almost doesn’t seem like he’s on “the Spectrum”. When I told her what the School Psychologist said about im needing 24/7 care and never getting married….she got so mad! She said, “Aidan? He’s the type of kid that will be a brilliant doctor one day or even a President? He’s very Social & Super Smart!”

    Aidan does have his “Autistic Days” as we call them where he’s overly sensitive and inappropriate and it requres us to be very very patient. (Something in the waaay back of my mind is telling me to research the GFCF diet and that maybe Aidan has some issues b/c of an allergy that we’re not aware of.) We have to remind ourselves on those hard days that Aidan chose US to be his parents and was sent to US because WE would do what’s best for him and love him no matter what….and we were strong enough to handle this. We still do joint compressions occasionally to give him input…he loves it and requests it sometimes. When he was 2, we got him a mini bounce house that we set up inside the house so he could bop around, fall down & not get hurt, but give himself joint compressions with the bouncing, falling.
    We look at my hubby’s best friend who FINALLY admitted that their 3 yr old son was dx’d as having stress induced rage/anxiety or something and the docs put him on the spectrum as well. The Spectrum thing is not ALL that bad. It’s veeeery broad and covers a wide rage of issues from Rainman/Sam I Am….to Bill Gates examples. At least it qualifies them for school earlier. :)

    Sorry this was soooo long….I just wanted to let you know that YOU are your child’s advocate. He needs YOU to be his voice with all of this…….and I’m right there with you about being able to afford services b/c we cannot. The IP class at the Public Montessori School was THE BEST thing that could ever have happened to Aidan…and our family for that matter, I don’t know WHY I pushed for that school….I just had a feeling that’s where he needed to be. :0)
    So, I’ll leave you with what Aidan tells me, “Stop, Breeeathe, and Think Mommy!”
    ~Trust your instincts!!!!!!
    (((HUGS))) from a stranger but a loyal reader. ;-)

  7. PS – I AM SOOOO SORRY THAT WAS SO LONG!!!! See what happens when a house of 4 children is finally quiet and Mommy gets time on the computer! ;-)

  8. I think part of the stress is questioning – questioning yourself, plus all the resistance you get from everyone else. Once you stop letting people in your head, start focusing on your instincts and the science of how brushing etc actually works (and remind yourself again that it has no bearing if he doesn’t have SPD – what’s the harm?) you will be much more positive. Many ups and downs to come – but so many more ups than downs at this point.

Leave a Reply

Your email address will not be published. Required fields are marked *