Life After NICU

Navigating Our Way Through Meltdowns and Tantrums

James has never been one to have huge meltdowns or unmanageable tantrums. Believe me, we’re thankful and know that we’re very fortunate. They’ve been happening a little more frequently since we moved. In order to get a handle on this, and to get some insight into how best to help James in all areas of development right now, we met with an autism expert last week. So impressed with our meeting with Dr. Stewart. He exceeded all expectations and gave us some much-needed, truly helpful advice. We now have names of some of the best specialists in the area for James to see (so thankful for this as James has had a three seizures recently and we desperately need a good pediatric neurologist), and we have a solid plan, that we can actually follow through with, to address the behavior issues we’ve seen recently. Couldn’t ask for more than that.

Watching Big Block SingsongA few ideas were reinforced to me during our meeting. One of the most important for what we’re experiencing now was all behavior is communication. All in all, James is adjusting to our move pretty well. One of the biggest signs of that, according to Dr. Stewart, is that James is sleeping well most of the time. The increased screaming and tantrums we’ve seen are James’ way of trying to communicate his confusion to us. Makes complete sense. James has no way to understand or ask why we aren’t going back to our old house or why his Daddy isn’t here, or anything else about why everything is so completely different. I started talking with James about moving weeks before we left Dallas, but he doesn’t understand the way a typical four-year old might. This whole experience has turned his world upside down, so of course he’s acting out.

What do we do about it? A few things, the first being routine, routine, routine. Predictable days should be the norm. The more routine there is, the easier it is for James to adapt when something unusual happens.  When events each day are random and unexpected, he’s constantly trying to adjust, feels less secure, and acts out more. Dr. Stewart said this should be the Christmas we look back on and can’t recall what we did because it wasn’t all that exciting or unusual. Not that we can’t make it special, just special in a low-key, uneventful kind of way. In addition to adjusting to our move to Tennessee, James is adjusting to me being gone all day, to being home with Grandma – which is wonderful, but still different from before, to starting school, and he’ll be adjusting to moving again in late spring. Until we get fully settled into a more permanent situation (and probably even then), he needs as much routine as possible.

While keeping a steady routine, we also need to create an environment that feels familiar to him. I’ve always been very conscious of that when we travel. I make sure we have some of his own toys, blankets, and other comfort items with us. Short term that’s enough to get us through. Here, we have all of the ‘things’ with us, but this house could not be more different from our old house. Absolutely nothing looks or feels the same. So our task is challenging, but we’re going to find a way to set up some parts of the house so they feel familiar to James. Familiarity brings comfort and security, and with that comes fewer meltdowns.

In addition to that, we’ll be setting up a solid communication system at home, that we hope can be used in school as well. James talks so much now and can tell us many things, but he doesn’t have all the words he needs in order to communicate all of his wants and needs. This is another cause of his meltdowns, especially as he’s understanding more and knows what he wants, just can’t find the words to tell us. We’re meeting with their communication and social skills expert in a couple of weeks to help us along this path.

Happy JamesChange is good. Change expands our minds. It’s what fuels us to learn new things and grow as people. This is evident so clearly in James right now. It’s just when everything changes at once that chaos can ensue. Which is also evident in James right now. When we have routine, a familiar environment, and ways to communicate, a little change leads to good things. That’s the balance we’re seeking to create.

*If you have a child like James, here are a couple of little things to keep in mind. It was reassuring for me to hear them again, and maybe they’ll give you a little peace in your own chaos. Not every moment is a teaching moment. Some moments are too far gone and the best course of action is whatever is best for the preservation of the family as a whole. And, your busy child who wants to open every door and cabinet, look under and into everything, who completely exhausts you by the end of the day…all of this exploration and desire to check things out shows a brain that is doing some higher level thinking. It’s actually a really good sign that gives hope to the future.

7 thoughts on “Navigating Our Way Through Meltdowns and Tantrums

  1. We are thinking often of all of you! So many positive things happening with this move! I can imagine how happy you and James will be when Andy arrives! Love and hugs sent your way!

  2. Andy, I have yet to have the pleasure of meeting young James, hopefully I will meet him this spring. I read your words and I must say, brother, you have a lot on your plate and thru this move that would drive anybody to drink, you handled it like a trooper, I hope atleast so far I have exceeded your expectations of a new friend and family member. I would be at your house tomorrow but my back gave out yesterday, “noone can say I didn’t give 100%”. I just wanted to point out to you because most ppl don’t or are too busy to state what they feel is obvious and therefore not needed to mention. Andy, you are a hell of a father and your words reflect tge love, care and dedication you have to your son and family. I just wanted to tell you that sir and to commend you for staying the course and not falling apart like so many fathers before you have just out of pure exhaustion. In more simple terms….YOU DA MAN!!!

  3. Oh, I wish I had your knowledge for my son Samuel. He is a twin, not too premature, but has a broad spectrum autistic disorder. With Tom being in the army, not only was change disastrous for him but it was a necessity. At the time, the army did not have autism on the list of treatable conditions. So we went round and round “chasing our tails” with doctors. I printed novels of studies and cases and they refused to diagnose him. He is so okay now. He is the child I can count on. He does what he is supposed to do, no questions asked ( as long as they are not new tasks). He is so smart. He has social things he may or may not overcome. But for years he could not articulate what he wanted to say. Tantrums were necessary. Samuel is a gem in my life. I know James is yours. I wish I could sit down and talk with you about things. Samuel is 15 now and has to learn to drive. Yep, day by day. But I do know one thing for sure, I wish it was easier for him, even if it has to be harder for me. That is for sure.

    • What an awesome Mom you are, doing everything you can for your children! You fought for Sam when nobody else could, and he’s turned into the young man he is because of all that work YOU did. I feel like there aren’t nearly enough resources now for children with Autism, but even a few years ago there was so much less available. Kuddos to you for finding a way for him.
      Always here if you want to talk…I definitely don’t have all the answers, but I can listen! 🙂

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