Can I get a little input here?

[jenners26]

DH and I are in the process of getting our 3yo DS evaluated through Early Intervention, but I could use a little input/advice here.

I have no idea what we're looking at as a diagnosis for him, so maybe it would be easier if I just gave you a few examples of the things we've noticed.

3yo was a late walker/talker. He went from not walking at all one day, to literally standing up to the couch and walking across the living room the next. He was 18 months old when this happened. He did a similar thing with talking: went from barely speaking one day to practically full sentences within about a week.

He has been a very...intense child. He's VERY happy or VERY sad or VERY angry. He will have tantrums that last for anywhere from 5 minutes to 45 minutes many times a day. Generally his tantrums are regarding food. He has a tendency to fixate on a particular food: crackers, chocolate, bananas...and if, for some reason he can't have the exact food he wants at the exact moment he wants it, he will totally meltdown: Screaming, crying, kicking the floor, kicking me or DH, and just repeating again and again, "I want XYZ, I want XYZ!" It's like he is "stuck" on it and can't move past it. No substitutions or distractions will work. If he wants a banana and we are out of bananas...good lord, the meltdowns are epic!  If he has picked out a food he wants and we don't have it, he will refuse to eat anything else that is offered. He'll go hungry over eating something other than what he has asked for, even if he LOVES the food I'm offering instead. 

He's also very particular about the quantity of food he receives. At the moment we're in FOUR stage: He must have 4 crackers, 4 cookies, 4 pieces of apple. If he doesn't have four, he will refuse to eat any of them.

He has a special attachment to chocolate milk. He is dairy free, so we use almond milk, which he calls chocolate milk. It's all he'll drink. No juice, no water, nothing but almond milk. And he will only drink it if he thinks it has chocolate syrup in it. (We just pretend...chocolate syrup gives him an upset stomach). So if he's there, we just pretend to add it. Which, knock on wood, is working so far! I'm not thrilled with lying to him, but it's the only way he'll drink it. He refuses it if he doesn't think it has chocolate syrup in it. (And by refuse it, I mean have another huge meltdown).

Besides food, his other major trigger is bedtime. His routine MUST be exatly the same. Once he has had a diaper change and pajamas on and is in his room, he has 3 Thomas trains that must be lined up exactly so on his dresser. He won't get into bed until he has them exactly lined up. He has to climb into his bed (still in a crib), if you try and help at all, he will get down and start all over again. His blankets have to be perfectly smooth and tucked in. He has a particular place where his chocolate milk cup must sit, and you have to hug him and kiss him and read him a story. If ANYTHING goes slightly wrong, or is slightly out of place, or if, god forbid, we cannot find one of his Thomas trains before bed, he will have a massive meltdown. He screamed for about 45 minutes the other night because we couldn't find Annie...one of the trains he has to have.

He does great in social situation...He loves other kids. Developmentally he seems to be right on track.

I don't know if i'm explaining any of this clearly enough. I feel like sometimes I tell people what's going on with him and they nod and say, "Yep, he's three!" But I strongly feel like this is more than just a "three" thing. I have two kids who are older than him, and neither of them did any of this, especially not to the intensity that 3yo does. 

I'm at a loss of what to do with him. We're pushing to have him evaluated through EI, but they seem to thing the answer is preschool (they haven't even met him yet...our appt is next Friday). I tried to convince them to do a home evaluation, but they're very set on seeing him at a preschool. (He doesn't go to school currently...we homeschool the older kids). I tried explaining that being in public isn't the issue...he'll be at his best in a new situation. He's very much a "show off/preformer" around other people. It's at home where we seem to need help. I don't know if I should give in when he has these tantrums/meltdowns or stand my ground and have him not eat/sleep/etc. They're still insisting on seeing him around other kids his age.

Anyway...any input you could offer would be great. I feel like EI isn't hearing me. I don't know what to do next or how to deal with the constant meltdowns.

Thanks in advance!
 

[Emmeline II]

I would get on the list for a developmental pediatrician. I don't know what the delayed-overnight walking/talking means but it could be related to his issues.

Getting a DP appt. can take awhile. In the mean time I would consult with a child psychologist/psychiatrist--they will probably recommend cognitive behavioral therapy. An OT evaluation may be helpful as well. I would make appointments for the alternative evaluations now and not wait for EI appointment.

I would go with your instincts over "he's just all boy/a 3yo" type comments. A lot of people here knew instinctively that something wasn't right but their concerns were dismissed by family, friends, even their own doctor. Keep going until you are satisfied. I've been concerned about Asperger's for several months even as ds is being treated for ADHD; after having a DP evaluation I'm satisfied with the Dr.'s explanation of why she isn't ready to give that diagnosis at this point (essentially, that he would be at the far mild end and that his other issues are possible explanations for his Asperger's type symptoms).

I also found this http://www.medhelp.org/posts/Child-Behavior/Can-a-pre-schooler-have-OCD/show/278389

[sbgrace]

I surely don't know...I'm just going to throw out some thoughts and possibilities.

First, I wonder if the issue with early intervention is that, in all the states I know, they stop at three and the school system takes over at that point.

He sounds as if he has extremely poor emotional regulation. My son does as well and much of the very happy, very sad, very...everything he his along with the major meltdowns sounds extremely familiar. The age of three with a child like that is absolutely horrendous sometimes. I can picture what you're seeing.

One possibility would be spectrum stuff (sounds like he's fine socially and on track developmentally--so this is likely not it unless you're missing the subtle things). You are mentioning a lot (way more than typical--I agree with you) of rigidity around his routines. This can be a feature of spectrum kids but there would, of course, be much, much more. I can give you some links to an online assessment thing if you think there is any chance but, again, this might be a long shot given you're not seeing any social issues.

The other thought I have is an anxiety condition like OCD. I can't tell what the motivation is behind his particular issues but if there is a great deal of anxiety it's possible you're dealing with something of that nature. I can get you information on that as well if you think it's a possibility.

I really, honestly, can't think of other stuff. Some kids of this age are rigid and grow out of it, yes. But I agree with you that this sounds far beyond that and mothers are almost always right in their instincts that there is something going on. I am certain you're dealing with poor emotional regulation though, as I said, and so that may be a big part of this.

[Rik-E]

Call your school district  & see if the have a 'child find' screening for preschoolers to identify special needs -- then take him to it if there is one.

A lot of what you are describing are things my son does / did and are part of his SPD / sensory processing disorders. They could also be other things, but definately a lot of sensory red flags there.

OCD also comes to mind, but I have no experience with it so it's just a thought. Both are in what is called the Autism Spectrum -- this does not mean everyone with this things is autistic, just that the

disorders are in the same family & often overlap. Another good thing to do is see if your doctor can refer you to an occupational therapist or developemental pediatrician.

[LynnS6]

No idea what it could be, but if you could video tape some of his home tantrums and bring them with you, it might help in the diagnosis. You  might have to go to a developmental pediatrician if he doesn't exhibit the symptoms that cause you worry in public.

And as an aside: Can you buy 'back up' trains? It might help you get to bed some days. We had two lambs for a while for dd.

[jenners26]

Thanks so much for all the input so far!

I'm lol'ing at the back up trains...DH and I were just talking about that the other night! "Why are we torturing ourselves!?!" :)

For those who have said you have kids who do similar things...do you mind sharing with me HOW you handle it? Right now, I feel like much of the time we spend "preventing/avoiding." For example, we make sure we have a small stock pile of the main foods he "fixates" on, so we don't run out. But when that doesn't work...what do you do? In the heat of the moment when there is screaming and crying and kicking and they've entered full-on meltdown mode...What do you do?  Am I reinforcing it if I give in to what he's wanting? Do I need to give in?

So far, the only thing we've found that helps at all is to sit him down on a dining room chair and talk him through calming down...deep breaths, quiet talking, etc. It works MAYBE 40 percent of the time. The rest of the time, we try everything from quick store runs to get what he's wanting, to ignoring him, to losing it and crying right along with him! So I'd love any input on what you do to deal with it in the moment.

Thanks so much!

[Emmeline II]

Originally Posted by jenners26 

For those who have said you have kids who do similar things...do you mind sharing with me HOW you handle it? Right now, I feel like much of the time we spend "preventing/avoiding." For example, we make sure we have a small stock pile of the main foods he "fixates" on, so we don't run out. But when that doesn't work...what do you do? In the heat of the moment when there is screaming and crying and kicking and they've entered full-on meltdown mode...What do you do?  Am I reinforcing it if I give in to what he's wanting? Do I need to give in?

If nothing else works (and it doesn't affect is health or safety) then just ride it out--I don't think there is anything else you can do at this point. Not eating one meal probably won't hurt him though you may want to use a multi-vitamin supplement.

[changes]

I do not regard such as 'giving in'. This child doesn't show this intense behaviour because he/she knows thast's the way he/she will get it. The child is genuinely upset about something and doesn't seem to understand what is gıing on or why and vcannot help feeling the why he/she feels and is getting really upset over it. That's my personal experience regarding these extreme meltdowns with my high needs ds2. Yes, a lot is done for avoiding/preventing, you learn to be better at it, more natural (and quicker) about it even through experience. I do not think it is wrong to learn about the (special) needs of your child and how to best deal with it so your child is most comfortable. Our child being comfortable in situations as much as possible means, at least in the longer run, a more ascertained and relaxed parent about it too, which allows a parent to deal better with a situation where a meltdown seems inavoidable and to deal better with the hn child in general. It IS tough. But you do learn to handle things by experience. I also learned that sometimes there is all this energy and frustration of my child that at some point just needed/needs to get out, ypu sometimes just feel it getting built up during the day or over some hours and you anticipate that BANG finally it happens. Then, no talking through or reasoning would be effective, not even hugging most of the time, not offering of xyz, but just being there while trying to avoid anyone getting hurt when needed, trying to stay calm yourself, be the baken (even if being attacked in the moment), and if you think your child needs this right then, lovingly wording that you understand the upset (really try to understand how you child goes through this and try to name his frustration), and explain you are there for him/her to wait untill he/she is abl to calm down, that it must really be so hard to be so upset, but that he/she will eventually be able to calm down. I noticed that like this it has been much easier for him to get in a place where he can slowly calm down again during some very fierce upsets. Most of all, as upset I may be myself, I try not to 'want to end the tantrum asap'. Nothing what triggers even more ifs the child sensing you are trying to stop it (which is the opposite of validating his/her emotions); the negative energy needs to get out first, however long it takes and however nasty it may get. When that happens, I completely focus on my child and block anything/anyone else/comments out. When needed (when people offer a hand or worse, cannot stand the scene and feel like interfering which only makes my son geting more upset, and for longer) I kindly ask people to leave us alone as now he just needs to get this out and, when needed, that it actually doesnt help when others approach/talk to us/him during such an episode, etc.

We have often been giving our son what he asks for if it's a realistic demand (does it really matter that much to say NO for this, is it such a big deal?), not to avoid a tantrum, but because we learned to realise that sometimes he is in a 'place' where he CAN not (very different from 'doesn't want to') understand what is the 'issue', why or how or when or ... . We do not want to 'avoid a tantrum for our comfort'. We genuinely do not want our child to enter a place of frustration because he is unable to grasp something. And this was (and is being :-) learned by try and error.

My observation is also, that he has had difficulty with processing information input, not really understanding the actual meaning of what we were saying, but that's improved tremendously and we also got more experience in wording things in a way he most likely will not misunderstand. I hope this has been helpful to you.

[VisionaryMom]

Everything except the chocolate milk (or any single-food obsession) is much like my son. He wasn't a late walker. He walked at 10 months, but it was very sudden. Though he had great communication skills, he did not speak until around age 2. Then he was speaking in complex & compound sentences pretty quickly. We also went through the need to have a certain number of items, usually with them placed in specific spots on his plate.

Age 3 was really, really hard. We saw a developmental psychologist at one point. I was in individual therapy at the time and would go in & just cry about DS and what to do. My therapist really felt that he had juvenile bipolar disorder with an OCD co-morbidity. The psychologist we saw for DS felt that he exhibited almost all of the traits as if he were classically bipolar, but he didn't think it was "bad enough." Yeah, right. He would rage for hours on end, and it was awful. These weren't "tantrums;" they were far more. Anyway the psychologist did some basic IQ-type testing. (It was Stanford-Binet, but I don't recall the test name at the moment.) He felt that the real issue was that DS' IQ was at odds with his emotional/physical development and that it would work itself out.

Around 4.5, he did seem to calm down. He still gets angrier than what I think is typical of other kids his age. (He's now 6.) Reasoning with him is much easier now. A lot of it back then was adjusting to the idea that he was ONLY 3. Because of the way he talked and acted (in terms of problem-solving skills), we did often expect behavior of him that isn't typical of a child his age. His response was to dig in his heels and become even more rigid. I spent a lot of time reading about NT 3YOs and then adjusting the way I talked to him or handled requests/transitions. 

We used a timer often to signal transitions. I would set my cell phone for 5 minutes before we left. The timer's a neutral 3rd party, so he didn't argue with it once we'd decided on how long until we left. 

I also read a lot about "spirited" and high needs children. Though he's not truly high needs, a lot of the ideas in those books worked. We also made a conscious effort to slow down and not push because our pushing him to do something really exacerbated the problem. Given that room, he really did settle down in his own time. We've seen no leveling off of his intellectual abilities as he's aged, but at least now he has the impulse control and cognition to name and explain how he's feeling much better.