Reflections on Addison – Part 3

Let’s talk about tantrums. Every child has them. You pluck your child from the playground at the park and go kicking and screaming to the car. You refuse to buy chocolate coated sugar bomb cereal and witness a meltdown in the middle of isle 3. You tell your child for the 10th time to put Edward down, that he doesn’t belong to us, it’s time to go and you end up doing the walk of shame from the very back of the book store (where the children’s section is hidden) past the barista and stacks of best sellers that you will never have time to read with a kicking, red faced, wailing child whose cries can be heard from self-help to periodicals.

Here’s the thing with Addison’s tantrums. We knew we were in way over our head when hoe hum screaming tantrums turned into stiff body, convulsing, scratching himself, bleeding toe nail episodes that you just couldn’t see coming. Bleeding toe nails, you ask? Yes, bleeding toe nails. He would roll his feet around on the carpet and rub his toes back and forth so much that it made his big toe nail start to crack and bleed. The worst part of these tantrums wasn’t the bleeding toe nails, it was that he was inconsolable. He refused any sort of physical comfort from us. If we tried to touch him, pick him up, hug him even look at him the episode would escalate. Imagine how agonizing it is for parents to watch their precious child in what looked like agony and not be able to give him a hug.

People would tell me “figure out what his trigger is and then avoid it”. It’s kinda hard to figure out what the trigger is when tantrums came out of no where. I can understand a tantrum when a child won’t get their way or has to give up a toy or is made to leave a super fun play date. We could be playing happily and for no reason I could see Addison would start to wig out. I thought I had a miniature Jekyll and Hyde on my hands. When he was happy he was the best little thing in the world. Huge open mouth smile ready to have the time of his life. And when he wasn’t on top of the world he was in torment.

Look at that precious face.

How could you stay made at a sweet face like that?

Here’s the thing…I wasn’t mad at him, I was mad at myself. Something was seriously wrong and I couldn’t help him. He couldn’t tell me what was wrong and I couldn’t figure it out. My job as a mommy was to help this precious soul navigate the overwhelming emotions and feelings he was having and help him find a safe place. I couldn’t seem to make it all better and I felt like a complete failure. I honestly thought that maybe I wasn’t cut out to be a mom. Maybe this was all a huge mistake and I was doing irreparable damage to this delicate creature. It was about this time that I told Dear Husband we were definitely not having any more kids. If this is what it was like then I sure as hell could not handle a second time around.

In desperation we saw our pediatrician and did our best to explain the turmoil we all were in. He gave us instructions to make appointments for speech evaluations, developmental evaluations, hearing test, occupational evaluations…the works. This was all done through the state health dept. I don’t know about other states but California and Oklahoma have free programs to help parents identify developmental delay in children under three. Over three and you’re going to start doing all of this out of pocket. One thing that I would holler from a mountain top: early intervention is key. If a child is in need of speech or occupational therapy it’s always better to start sooner than later. When it comes to diagnosing autism or ADD or ADHD that is a whole different ball of wax. It is difficult to diagnose it in very young children. I don’t have any experience with that so I’m not going to expound any further but will say again, early intervention is still key.

Here is what we found out…he was a late talker. At age two he had a small repertoire of words. Most importantly, he had problems with sensory integration and was eventually diagnosed with Sensory Integration Disorder. What is sensory integration you say? Imagine you are eating dinner, having a great time with your family. The texture of the mac and cheese is a little slimy in your mouth but you eat it anyway. Out of the blue there is a loud banging at the front door. The noise is startling but you know it’s just someone at the door and you get up and get it. It’s the teenager who was mowing your lawn. The smell of grass and gas from the mower is overwhelming but not enough to make you sick so you pay him and go back to dinner. On top of this the tag in your shirt is bugging the heck out of you but you can reach back there to scratch it and know that you can just ask someone to cut the tag out after dinner. For most of us this dinner time interruption would pose no problem at all.  All of your senses were assaulted but your brain was able to process the information and put your coping mechanisms to work. If you have Sensory Integration Disorder the slimy, squishy texture of the mac and cheese would make you gag, the loud noise would make you jump out of your skin and not be able to settle your racing heart, the strange smells would make you feel sick and the overall disruption would be too much to take. On top of that you don’t have the words to ask for help with the itchy tag or anything else. Most of us are able to adjust to all the changes and myriad of data, big and small, that come at us all day long. For a little one who has a hard time rolling with the punches and making a change at the drop of the hat these things can be earth shattering. Loud noises, strange smells, itchy clothing can either be unsettling or excruciating. Add to that the problem of not being able to express yourself verbally and everyday is filled with emotional and physical obstacles and fear.

I’ve recently learned that Sensory Integration Disorder has a new name: Sensory Processing Disorder. Let’s learn more about SPD.

Keep reading –> Reflections on Addison – Part 4

9 Responses

  1. Julie

    Thank you for sharing your story Steph! It’s hard to open up about our own feelings of confusion and inadequacy, but it’s important to know that ALL moms go through it at some point. With me, it was the first year. I remember my husband saying “you wouldn’t take it back would you?” and me thinking, “um, probably.” God bless you and your sweet boys. They are lucky to have such a strong and informed mommy!

  2. Lynne Levy

    I love that you are able and willing to talk about all this. I think that is a really good thing for everyone involved and for your friends as well. We are all part of your “village”–needed to raise any child.

  3. Judy Cain

    Thanks Steph. I’m sure it is difficult and you probably have felt judged by others based on behavior that you had no idea as to the cause. As Lynne states, you have a lot of us that make up your village and I hope you know that you and your boys are cared for and loved by many. Thanks for sharing.

  4. Hugs, Kisses and Snot

    Thanks all – It really does take a village. So many moms struggle with the feeling of isolation. Even if you don’t have family support near by there are still friends out there who are willing to help. The biggest hurdle is asking for that help.

  5. seeking316

    oh the tantrums….they are so hard to describe to those that don’t go through tantrums like this. They think of their own “average child” tantrums…..they do not even compare. We are still dealing with them at 8 years of age.

    Stopping by from SITS.

  6. Jennifer

    Thanksmfornshari g. Just an FYI-ALL states are required to have early intervention programs. It’s Soonerstart in Oklahoma, Early Childhood Intervention in TX, and I don’t know beyond that other than its required. IDEA part C covers birth – 3. Once a child isn3, then the school district of residence is responsible for child find and evaluation under IDEA part B, otherwise referred to 3-21 services. So, if the early window is missed, a family can take their child to their local district and request an evaluation.

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