Hi! Out of my mind, thanks!

[indiegirl]

I know I've written a bit about Zoe but I don't talk about it because it's kind of difficult to put into words. She was diagnosed with PDD last January. She is nearly five now and exhibits tendencies toward Asperger's at times and definitely has sensory issues.

Her tantrums seem to ebb and flow, and we are in a real "ebb" period these days. Today she's had at least thirty tantrums. Thirty. It doesn't matter what I do or don't do--she's out of control. She's started hitting and doing destructive things.

By 9am she was on her third tantrum and I decided to film parts of it. I don't really know why. I feel like I'm going crazy sometimes. These videos are what I go through each day, over and over. I try to be reasonable and consistent. I've said this before, but I feel like my "bag of tricks" is totally exhausted.

I don't know what I'm looking for--advice, observations, a laugh...I guess I just need a shoulder and to share this with someone. The thing is that in school she does well. With company she does well (to a certain point). In public, she'll generally manage or I simply don't take her places.

ETA: Links removed, thanks!

(Not necessary to view, but a good background. She is angry I won't consent to cereal with no milk.)

Video Two: (you can see how she hits herself and starts to lose it) she loses it and throws her bowl, hits herself

Video Three: she's been set out of the kitchen for throwing the cereal in her bowl on the ground. She ends up dumping the second bowl.

If I were to watch these without knowing Zoe, I might say something like "Don't tolerate an ounce of the behavior. Remove her from the situation. Change the situation..." I feel like I am constantly walking this fine line between her completely losing control and going off the edge--it's not pretty. Time out, ignoring, changing the topic of conversation, distraction work intermittently but tend to throw her into a more aggressive state.

These images are not pretty, but her totally losing it sucks so much worse--for everyone. She goes off the deep end and tries to hurt herself of property or one of us.

I'm not sure where to start with the professional help--we have this diagnosis but no real plan of action. And it's hard because the Zoe that most people on the outside know is NOT this Zoe. The public Zoe and the private one are so drastically different. I don't know what I'm doing wrong. Our other children are not like this, you know?

In the third video, she talks about needing a hug. She will often use me as a weapon, use hugging (or nursing, when we nursed) as in, "Nurse me or ELSE!" or "I need a hug NOW or ELSE!" I have to tell you that I often feel violated by this. I tell her I'd be happy to hug her when she can ask me kindly and calms down.

Also: once she calmed down, she had two full bowls of cereal. I can tell you she was really hungry and that is a trigger--but we were locked into a catch 22. I am comfortable with walking away from the food issue (skipping a meal won't kill anyone), but in this case her destructive behavior escalated the situation to the point where consequences were part of the equation.

Jesse

[3*is*magic]

I couldn't read and not send you a . I know how frustrating my almost 5 year old can be when she has a single tantrum that ends pretty quickly, and I think you did an amazing job of keeping your cool, especially first thing in the morning.

I wish I had good advice to offer - I hope someone else does. Hang in there, mama.

[bobica]

from me too! I would definitely post in the special needs forum- there are some very very experienced mamas over there.

dd gets VERY irrational when she's hungry. from a blood sugar angle for *this* particular type of situation, could you give her juice as soon as she gets up to take the edge off?

to both of you!

[sunnmama]

My dd does not have PDD or ASC, but has demonstrated some similar patterns of behavior to what I am seeing on your videos. I refer to it as "storming" and "raging" (storming being the endless small meltdowns throughout the day, and raging being the big, violent meltdowns that punctuate the day when she is in a pattern of this behavior). For my dd, the behavior is triggered by general stress (we saw it around the birth of her brother, and a major resurgence after our move), and exacerbated by hunger, fatigue, food additives and sensitivities, etc.

I know that this is only addressing one small episode, and the issue is much larger, but I try to avoid giving choices when I can see that dd will not handle it. Food choices are particularly difficult, because, as you noted, the decision needs to be made when she is hungry (trigger). When my dd is "this way", the egg (protein) just appears before her without comment. Around snacktime, cut apples and cheese just appear on the table. She notices and eats, generally, and the food--and especially protein--help regulate her mood.

The small tantrums all day are like being "pecked to death by ducks". A major meltdown, while horrid in the midst, at least leaves dd feeling "released" and can improve her mood for a bit. It is hard to know what is worse

My dd is feeling and doing much, much better these days, and I am eternally grateful for that! So since I have extra, I am sending my spare strength to you for patience and wisdom :

[2 in August]

First off, big s to you. You seemed so calm during all three videos and I know how hard that is to do. My dd is 6 and she can act the same way. Maybe not as often, but in just as big a way. I know how frustrating it is to constantly walk that line between giving in to the immediate problem but then making 100 more problems later on. I know about constantly assessing the situation for triggers and thinking 30 steps ahead to make sure you're trying to set up the environment to make it easier for her to be her and everyone else to still get their needs met. It is so tiring and frustrating. My dd has gone on food strikes and not eaten to the point of becoming lethargic and getting sick. So I know what a battle over food can do. There are many foods that she won't eat any more because I once tried to make her eat them. It's crazy.

One thing that I was thinking about while watching all 3 videos is how she processes sensory things. It's a big problem for my dd. Food textures are part of her aversions to food. She won't eat anything squishy. I dare say if I tried to put milk on her cereal, she would refuse to eat it too, although she'll eat dry cereal and drink the milk without a fight. Another reason I wonder about a sensory processing problem is the demanding a hug. I wonder if she needs that external firm but gentle pressure to help her relax. My dd isn't like that so much now, but when she was a toddler many times I had to hold her gently but tightly to get her to calm down and be reasonable. I know that it's hard when she's screaming and demanding. You don't want to give in and reinforce that demanding a hug is appropriate behavior, but you have to balance that with, will the hug really help diffuse the situation? It is such a fine line with no easy answers.

I was just talking to a friend today about how as kids get older, the expectations for their behavior changes and not all kids can change as quickly as the expectations do. Just today we went bowling with a bunch of her friends. We had everything from my 17mo, a 23mo, a 2yo, 4yo, 2-6yo and a 7yo. Wanna guess who the only kid throwing a crying fit over whose turn it was was? My 6yo. Not the busy toddlers, not the preschooler, my 6yo who flipped out every time she thought it should be her turn even when it wasn't. My 6yo who yelled at my friend when she questioned why my dd was taking her ds' turn (my dd did have permission, the little boy didn't want his turn and it was offered to her). But it was my kid who was yelling at his mom and starting a crying fit instead of just saying 'E didn't want his turn so your dh told me I could go next'.

Many, Many more s to you.

[amcal]

First, I have to say that I am not familiar with what you are dealing with. But, one thing that struck me was the struggle over milk in the cereal. Personally, and again, I don't deal with what you do, but I'd probably just let her have the cereal or other food choices and avoid the conflict. Clearly, if she wants snickers and M&Ms for dinner, that's not an option but if the struggle is cereal with or without milk, I'd let her have it without to avoid the conflict.

The same thing with the hug. I know she's demanding a hug but it seems she's demanding it for a reason. Does she need your arms around her to help her calm down? Does she need you to take her to a quiet place so she can get away from stimulation and just calm down wrapped in your arms? I don't know - again, I don't deal with what you do and I can't imagine what you must be going through so please don't take it as a judgement but it just seems like she needs you to hold her when she's asking for a hug.

[mackysmama]

First, mama, hugs to you. You did a great job staying calm with her. I know that can be VERY hard. I have a 5.5 year old with sensory integration disorder. I am very familiar with the scenario you posted. Here are my thoughts and please know they are coming from a desire to help both you and Zoe.

My son often requests his cereal without milk and it used to bother me because cereal is suppose to have milk. But, it really doesn't need milk. It doesn't become a super food just because it has milk in it. It's still cereal. And I figured out that his sensory stuff is WHY he wants his cereal to be crunchy and it just doesn't stay crunchy in milk. He wants to crunch, crunch, crunch to give himself the sensory input that he needs to organize himself. I understand that you may want Zoe to have the protein and fat in the milk. My son often likes a glass of milk with a bowl of dry cereal or he will eat something after the dry cereal- same food intake but without the fights. To me, it looks like Zoe was hungry and cranky and needing to eat. I think you need to let go of your expectations of what that is suppose to look like and focus more on helping Zoe meet her needs - get food into her and get sensory input to help calm and organize herself. Cereal without milk would have been great for both. Also, in the first video, the little girl behind Zoe helped herself to a large handful of dry cheerios and was eating them as you told Zoe that wasn't how you do things in your house. It was very clear that Zoe noticed this.

In the third video, it is clear to me that she is sensory seeking some deep pressure (which would have been met, at least partially, with crunchy cereal). She is using what looks like a ribbon to pull on the bottom of her feet - that's almost exactly what is done in OT to give deep sensory input!! And that demand for a hug was likely also an effort to get some deep pressure to help calm herself, as well as an effort to reconnect with you. At that point, I would have placed the priority on getting her basic needs met, rather than having her work on her manners. Those things can be talked about when she is in a better place.

I know it is very hard to go through all of this. Trust me, I KNOW!! I have had to have a dramatic transformation in how I deal with my children. I have had to move far, far away from what I think ought to be (like having cereal with milk "because that's how we do things in our house") to trusting that my children are using their behavior to communicate a need. This has been a GREAT challenge for me but the payoffs have been fantastic. My son no longer needs OT and is doing great! Remember that children use their behavior to communicate their needs. From what I see in the video, your daughter was clearly using her behavior (and, really, her words too) to tell you what she needed - she needed strong sensory input by eating something crunchy and not something mushy (my son actually gags and throws up on mushy food because his oral sensitivity is so acute), she needed deep pressure input, she needed a hug for both reassurance, connection with you, and sensory input.

If you haven't already read them, I recommend the following books.

Raising A Sensory Smart Child
Sensational Kids
Unconditional Parenting

I'm keeping the list short so as not to overwhelm you but feel free to PM me if you want more of a reference list. I would also recommend you take a look around on the special needs sub-forum as well as the gentle discipline (there is a great list of book recommendations).

I know it may be hard to hear, but I think everything I saw in the video could have been prevented by giving her cereal without milk. I understand this was just one struggle of many that you have but I've learned from experience that a lot of them can be eliminated by trusting my child and learning to "hear" what he is saying through his behavior.

Good luck mama!

[HarperRose]

I also think you should just let her eat without milk. It's ok.

I understand it. We've had meltdowns all day w/ our oldest and then yesterday it was meltdowns all day w/ the middle one. Oldest has Asperger's and SPD and I'm suspecting that Middle may have some sensory issues, as well. Youngest is 2 mos and so far seems not to have either of the issues my older 2 have. (Please, God, give me one child that's issue-free!)

Pick your battles. And DEFINITELY post this in the SN forum.

[savithny]

first, ((hugs))

My DS is not PDD, not spectrum, but is certainly "quirky" and I recognize many sensory issues in him as well.

Your videos gave me flashbacks to the bad days of tantrums, starting when he was a bit over 3 and tapering off at 4.5 to 5... his were not as frequent as you describe, but even the tone of voice and the "I can't! I can't calm down!" were very, very familiar to me. DS once cried all the way home from Borders "I want to go back to the book house!" We called it "Stuck on 'no'" and it was like he just got stuck in one moment of time and could not shake himself loose. I was lucky in that it was not a daily thing - although we rearranged our life for awhile to avoid major triggers like leaving a park or saying goodbye to certain friends.

I'm in total agreement with you that consistency is key. But I'm going to give you a tool another mama on another board gave me. Ask yourself: "Is this the hill I want to die on?" A tantrumming child with PDD or sensory issues -- sometimes you have to decide on a few basic things and be consistent with those, and let the small stuff slide. As long as you are consistent with the biggies, I don't particularly think giving up on the small stuff will damage anything. So before I make a stand, I think "Hill? Die? Today?" and if it is *not* - I don't start down that road at all. I just say "Okay, why not?" Conversely, if it is that day and that hill, then I buckle in for the ride. Carseats are a hill. Not harming others - a hill. Mismatched socks or cheese-free pizza? Not hills.


And so, in your current situation, I would probably have just said "Okay, cereal is fine without milk. You can have a glass of milk afterwards, then." Or something like that. My kids actually both ate cereal dry until they were 5. I agree that with kids with sensory issues, the texture change can be an issue.

My DS would work himself up until he just couldn't calm himself down. All the time apart from stimulation, removal from the situation... no good. Firm holding would often help, and I learned (Through trial and error- a lot of error) that when he was worked up like that, I'd ask him "Do you need help calming down? Do you need a hug?" and he'd sob out "yeh-eh-es." He was really, truly, not in control of himself -- and that is *scary* to a kid!

In my experience, hugs, when he wanted them, did not seem to feed into any kind of "I cry and I get what I want" thing. If he said a hug would help, I'd squeeze him hard (another sensory thing, by the way) and I'd deep breathe until he was breathing with me, which also helped him center himself.

In general, once DS was irrational like that, all the "if then" and "well, natural consequence" talk was just out the window. He was not processing it, could not process it. Once he hit the out-of-control, irrational, totally melted down not himself phase, the only way out was helping him regain control *before* we could talk about it. In fact, too much talking would make it worse. Worst of all was changing tactics - if I tried to go from a diversion to a natural consequence, or from consequence to logical reasoning, it would just drive him into a frenzy. It was like choices were overload at that point. Rationalizing -- "if you do X, we'll be able to do Y like you want," only made things worse, and I learned that I had to just stop that line of thinking. That logic was something for before the situation (if I knew we were heading into a trigger situation) or for afterwards, when he was calm and we could revisit what had gone wrong ("Next time, remember that you have to put on your shoes first before we can go to the restaurant.")

[indiegirl]

I want you to know I'm drinking all of this in and appreciate your amazing insight. Thank you, each of you, for your words of support and I will comment more tomorrow.

Jesse

[Individuation]

Why are you insisting on milk in the first place? Many, many people find the American cold "cereal" eaten with milk to be utterly vile. I am one of them. A lot of people with kids on the spectrum would find eating milk-less cereal to be pretty minor on the list of parenting frustrations. It sounds to me like you invited this meltdown and then stood back to videotape it.

I'm unclear on your motivation here. Why is it "violating" for your child to try to get a hug from you, and yet not violating for her to have video you took while she was under extreme stress broadcast over the internet.

This situation makes me very sad.

[Dar]

I always eat cereal without milk. I agree that it's not a battle worth triggering a tantrum over.

Rain had major meltdowns at 5 and 6. The Ross Greene book called (I think) The Explosive Child was helpful. He suggests putting issues in three mental baskets - Basket A for non-negotiable stuff, like physical violence, that you're willing to provoke a tantrum over. This basket should start out fairly empty. Basket B is for issues that you want to work on with her, but you'll back down on if necessary. Basket C is for issues you're just letting go for now...

In addition, you want to start helping her find ways to deal with her own feelings. She's not throwing tantrums to upset you - she's doing the best she can to deal with her feelings. She just needs better tools. If hugs help her calm down, that's great - help encourage her to ask for a hug before she melts down, when she starts to feel out of control. See that as a positive thing - she's trying to take care of her self, and maintain self-control. Encourage her to find other ways to calm herself, too - maybe a weighted quilt type of thing? Or a squeezy ball, or a lump of clay... experiment, but be on her side.

Also, low blood sugar was a big trigger for Rain at that age. No, missing a meal won't kill her, but sometimes she had such a fragile hold on self-control that she really couldn't do it when she was also dealing with low blood sugar. I tried to make sure she had some protein to eat every few hours, to keep her from getting to that place. I'd try giving her a little somehing with protein when she first gets up, like a glass of milk or piece of cheese.

Dar

[indiegirl]

Originally Posted by Individuation

Why are you insisting on milk in the first place? Many, many people find the American cold "cereal" eaten with milk to be utterly vile. I am one of them. A lot of people with kids on the spectrum would find eating milk-less cereal to be pretty minor on the list of parenting frustrations. It sounds to me like you invited this meltdown and then stood back to videotape it.

Nope, not going to even buy into the whole defending of my choices on this one, sister. Walk my shoes, live my life before you suggest I'm inviting anything. This is a call for h-e-l-p on my part. I'm at the end of my rope and am looking for creative solutions here. Reaching out. Asking for suggestions.

I'm unclear on your motivation here. Why is it "violating" for your child to try to get a hug from you, and yet not violating for her to have video you took while she was under extreme stress broadcast over the internet. This situation makes me very sad.

You and me both! This situation sucks!

Your question about the cereal/milk is a good one. I didn't mention this before, but what happened in the past with the milk is that the kids would ask for the whole cereal-with-no-milk deal and I'd do it, and then they'd eat half as much cereal, not touch the milk and then not be full enough an hour later. Plus, we've just wasted a ton of food. When they eat cereal with milk they eat the amount that fills them and tend to carry that energy with them throughout the morning.

Before we got to tantrum-mode, I talked with Z about all of this. I asked her if she planned on eating a regular amount of breakfast cereal and she told me she only wanted a few bites. Then I felt like I was haggling, I was trying to make a deal. I'm not into making deals all day. She was hungry, she eats cereal every morning with milk (she went on to eat two bowls of cereal with milk)--the truth is that I felt manipulated. She knows why we have the rule because we've talked about it at length.

The hug aversion happens only when I'm yelled at to "do something" like hug or nurse. It's my body and I'm happy to hug, snuggle, give massage/deep pressure, but not when I'm being yelled at. It seems like such a violation to me, even coming from a child.

[blessed]

I guess I'm finding myself identifying with Zoe as well. I'd rather bite my own arm off than succumb to what would feel to me like nonsensical tyranny over my actions.

So if Zoe had 30 tantrums that day, it seems to me that the first 3 at least were the result of an unecessary and soul crushing (for both of you) power struggle.

Poor baby. Poor mama. Poor family. Very very sad.

[indiegirl]

Ultimately, I think the root cause of this was that I woke up later than normal today and she was too hungry. This was the first trigger.

I'm not sure why she picked the milk/cereal battle today, but it was an issue I thought we'd taken care of this summer rearing it's head. I'm down with picking my battles, I play that game. I can see how this was escalated by me choosing not to be flexible--and it doesn't really why I didn't give an inch (ie, the history of this particular issue in our house).

The child needs to eat before we talk about anything rational. OJ, eggs, toast, whatevah. Eat before talking, that's the game I need to play.

Now. As far as the rest of our life: how the hell do you know if this is "your hill?" Truth be told, we went round and round about the milk/cereal deal for a time. Going back this morning would have negated the entire journey we took, right? This isn't about the milk/cereal, it's about our family creating a system we work from and then having it undermined constantly.

When do you give and when do you stay the course? Do I let my child yell at me for a hug even though it makes me feel like my body is not my own? I feel like she used our nursing relationship as a weapon and is now using hugging as a weapon. I don't know if that's my history with abuse rearing it's head or me just wanting some simply respect for myself and my body.

Z and I spent a lot of time physically touching, mind you. Back rubs, firm hugs, sweet pats throughout the day. I have no problem touching her, let's be clear! I love that she knows it's a tool for her to calm down and I think Dar is right--now I need to work on getting her to advocate before things get out of hand.

We've been out of our routine for two weeks and I see how it's especially hard on ZoZo. I get it, now I want to figure out how to stop the cycle of negative patterns which we are certainly entrenched in right now. Your words have certainly helped me. Thank you.

[indiegirl]

Also, it was my intention to only post the vids for a short time--and I feel like, at least for now, I've heard some great feedback. I am going to take the links out but would be happy to share them again privately.

Jesse

[Individuation]

Originally Posted by indiegirl

Also, it was my intention to only post the vids for a short time--and I feel like, at least for now, I've heard some great feedback. I am going to take the links out but would be happy to share them again privately.

That would probably be for the best.

(edited out something that could possibly be read as sarcasm)

[indiegirl]

Originally Posted by Individuation

That would probably be for the best. A question: Is it the PDD diagnosis that makes you feel that you have the right to "share" personal videos of Zoe's stressful moments, or do you feel that no child is entitled to privacy before the age of 18?

I talked with her about the vids. I told her I was taking them so I could ask some other folks about how to help her. She said okay. We watched them together (later) and talked about how she felt.

Any other broad brush strokes about my intentions you'd like to paint?

I'd prefer to extend my hand and simply ask for your help on this rather than your judgement. I've got thick skin and a good heart and am coming from a place of real honor and love.

Jesse

[Individuation]

Originally Posted by indiegirl

I talked with her about the vids. I told her I was taking them so I could ask some other folks about how to help her. She said okay. We watched them together (later) and talked about how she felt.

It's kind of irrelevant whether you were able to convince the child in the situation that posting the video on the internet would be a good idea. Legally, a child cannot give (or not give) consent to such a thing. As the adult, it is your job to make the judgement call as to whether such posting is exploitive. In this case, I believe it is.

I don't recall making any generalizations about your intentions. Quite honestly, I'm still trying to figure out what they could possibly be. As far as what "place you're coming from," I really don't know what to do with statements like that. I think that you have demonstrated a lack of respect for your daughter in both this post and the incident which provoked it. This is some fairly cut-and-dried stuff, independent of the emotions at play.

If you want feedback, that's mine.

[amcal]

Jesse - I totally know what you mean about trying to figure out if this is the hill you want to die on today. I have a 4 yo who is a huge challenge. She can throw fits about any thing and everything. Although she's getting better, there was a time that she would throw a fit if I picked the wrong socks for her to wear, the wrong color hair tie, the wrong plate/bowl/spoon, if her favorite shirt wasn't clean etc... it is so incredibly exhausting.

For me, picking and choosing my battles or deciding if this hill is worth dying on today came down to health and safety. And, this was really hard for me because sometimes it meant going against what I wanted, what I had implemented as rules in the house etc.... But, ultimately the goal is peace. So, as situations would come up, I would really have to decide if the situation dealt with health or safety issues, if not, I tended to let it go.

I try never to get into food conflicts. Although it's incredibly frustrating to have a child who is hungry minutes after meal time, it's way better than fighting. What we do is have meal time. They can eat as much as they want and I don't force certain things - milk with cereal isn't worth your sanity so I wouldn't force it. After meal time, I have a snack drawer and snack shelf - the kids know that at any time during the day/between meals, they can go to the snack drawer/shelf and have something there - raisins, apple sauce, cheese sticks, yogurt, whole grain crackers. Giving this option makes them feel like they have freedom and choices and it keeps me from having to make a constant barrage of snacks all day long.

As far as the hug issue - I can totally see why you would have a negative reaction to being screamed at for physical affection. It wouldn't be fun - I absolutely get that. But, if the ultimate goal is peace, it sounds like you may have to bite the bullet on that one. How about trying it? It may not work but, it seems like it would be worth a try when she's having an out of control moment and screaming for a hug to just get down on the floor, wrap her in your arms and sit quietly. For some reason, she needs this and if it helps diffuse the situation, I would try it. Maybe with time, you'll be able to move from feeling violated to understanding that her need for you isn't to violate you, it's s need for the safest, warmest most comforting place your DD knows.