Kids are finally down for nap, but I’m having a hard time decompressing. I really feel I’m at the end of my rope and have no idea what to even try at this point.

Background: “CeeCee” will be 5 in Aug. She is one of my adopted kiddos. We brought her home from the NICU when she was 3 months old. She was a 26 week micro-preemie, weighing in at 1 lb. 15 oz. and 12 inches long. She had the typical medical issues of that gestational age… 3 weeks on the vent, PDA litigation, grade 2 brain bleed, level 2 ROP that resolved without surgery, severe GERD, MSPI, on O2 for 14 months, difficulty sucking and swallowing that didn’t resolve until well into her 2nd year. Multiple cases of bronchitis, pneumonia and ear infections during her first 18 months, eventual ear tubes placed. She also had some hormonal abnormalities that led to a dx of CAH… as a result she was on steroids for the first 2 1/2 years of her life… This was a misdiagnosis, but I don’t know if the medication could have had a side effect that is contributing to her current issues, especially her language delays. She had several other indicators that caused her geneticist to do additional testing, but there is no conclusive diagnosis. She also had confirmed prenatal drug and alcohol exposure, but was not born addicted. She does not have FAS, but her developmental issues are typical of a drug exposed child, so maybe FAE, but we haven’t pursued having a dx. She showed early signs of SPD and had pretty extreme defensive posture as an infant. She continues to have issues with loud noises, soft touch, crowds or chaotic situations and any disruption in her routine. She has been diagnosised with global developmental delay (she’s made gains recently and is developmentally about half her age) and her language issues have been the most severe. She didn’t use single words until around 40 months and until that time would respond with a blank expression when verbally prompted. We’ve seen an vast increase in language usage over the past 1 1/2 years, but she still appears to have processing issues. She has difficulty generalizing information across contexts and has a general difficulty with recall. Life with her is all about repetition. There might be a few more things, but this should give you a general idea of the range of challenges that CeeCee has faced. Maybe one of you has a child with one of these issues that has gone through this before?

I would like to add that CeeCee also has MANY strengths. She has a strong desire to experience the world and once she feels safe in an environment, enthusiastically explores. She wants to be able to do things herself and will persist at trying for long lengths of time without asking for help. Her sense of accomplishment when she’s successful is contagious, she is so proud of herself, it’s wonderful for all of us. Her main frustrations come from not being understood, or “believing that she is not understood” (this is our key issue currently, more on that in a minute). She has a great sense of humor and is one of the most joyful kids I know (except when she’s not).

Current Issue aka the Reason I Have LOST MY MIND: She screams. Anytime she even thinks that things may go differently than she expects, even if she’s been given no indication otherwise, my girl just plain wails, hollers and shrieks at the top of her lungs. It’s instantaneous, she’s fine one moment, completely out of control the next, no warning. And, of course, once she’s in that space, she can’t hear reassurances or in any way participates in calming herself down. For example: We have a pretty set routine around here. Every afternoon we eat lunch, play (sometimes outside, but we don’t say that’s what we’re going to do until we know for sure, because she can not handle that change of plan), take a nap, eat a snack, play (sometimes outside, etc), eat dinner, play/activitty/baths (slight variation depending on the day of week), bed. My older kids and husband come home at the same time every day and if there is a change we warn her early and discuss it often, to make sure she understands and is prepared. In general, preparing her for what is going to happen is a big part of my day with her. She just can’t handle things that are unexpected. So, this is the routine… Despite having things as locked down as possible, she becomes obsessed with continually confirming what is going to happen next and becomes hysterical at the idea that it might not. We have tried reassuring her, we have tried redirecting her to the present moment, we have tried refusing to participate in the conversations at all, we have tried everything we can think of, but nothing is working with her.

For example, after lunch I told her we were going to play and then take a nap (same as always), C: “I get up after nap?” Me: “Yes” I gave her 30 min, 20 min, 10 min and 5 min warnings before nap. Each time, C: “I get up after nap?” Me: “Yes” Several times while playing she on her own came up and asked my if she was going to get up after nap. Always the answer was yes. We have a brief pre-nap routine that involves changing the little ones diapers, collecting bears and loveys, etc and as soon as I began this today, CeeCee began screaming, “I get up after nap!” Full out hysteria, she couldn’t even hear my reassurances that yes, she is getting up after nap. And while I know it goes without saying, she has never not gotten up for nap. Everyone naps at the same time and no one gets up earlier than anyone else, so it’s not like she has missed out on something in the past and is afraid of doing so again. I’ve tried several approaches to calming her, but always go ahead and move her along through the process (when the others are ready to go upstairs, I pick her up and take her upstairs, put her in her bed, etc).

I do not know what to do. Today it was around 45 mins of screaming, at the top of her lungs, uncontrollable, mind piercing screaming and I don’t know how to make it stop. One of the things that I didn’t mention in her background is that she has never had the ability to self soothe. In the past, I’ve always been able to bring her down… covering her body with my own and “containing” her, while rocking back and forth and saying a 2 or 3 word phrase over and over in her ear has worked in the past, it does not work anymore. It feels like we’ve tried everything, including just telling her it’s nap time, I’ll see you later and walking away. That definitely doesn’t work!!!

This is just one example. It seems like lately anytime we go through any type of transition she is quick to get upset in this way.

If you’ve made it this far, I thank you. When I came down here to write, I was shaking and just sitting and getting my frustration out has helped me calm down and feel better. I really just don’t know what to do at this point to help her.

Any ideas?

Ok, you’re not the only one wanting to bang your head against a wall, that’s for sure. I’m wondering, does she have a transitional friend? With Autistics (that’s my world) transitions and unexpected variations or surprises are the worst, and a lot of folks get some object that the kids absolutely adores, to make transitions with them. I don’t have all the details on introducing the child to the concept that this is a soothing friend or something/someone to help make things easier for them.

Also, I know when my daughter starts to obsess and perseverate (she’s 5 PDDNOS), there’s usually been some kind of trigger. Often it’s something she saw or heard that we weren’t even aware she was in the room for. Is there a possibility that there was something on a cartoon, or something one of the older kids may have been talking about, that she got turned around into thinking that some people or things don’t get up after nap? Or, maybe did one of the little ones sleep later than usual, and you and DH commented on the baby not getting up as usual?

IDK, I’m probably not even helping. I’m sure you’ve thought of all this already. I just know that we went through something similar (only without the screaming) with my girl. My husband coughed lightly after getting some Parmesan cheese in his windpipe. This led my daughter to ask questions about the anatomy of swallowing, so I described it to her. She asked a couple of (I thought) innocent follow up questions the next day, and I didn’t think much more of it. Until I noticed she wasn’t eating. UGH.. She actually became afraid to eat! It took the better part of a week, and much talking and such to get her back to her normal eating habits. During that week there were tears, and fear, and drama. But it had a trigger. And I later found out she’d been telling her teacher about it, but she was so calm and matter of fact in the way she presented it, none of us realized, at first, that she’d been “traumatized” by the experience.

Anyway, I feel your pain. Sorry I’m not much help.

Laura