Meltdowns

[popmom]

It's late. Feel free to ignore or wait until a more convenient time. I feel a small amount of guilt for posting yet another thread, but not enough to keep me from doing it. ;)

 

DD's meltdowns have increased due to some unusual circumstances. I did a search on this topic on the forum and ordered the book Parenting a Child Who Has Intense Emotions: Dialectical Behavior Therapy Skills to Help Your Child Regulate Emotional Outbursts and Aggressive Behaviors.--on the recommendation of someone on this forum. Regardless of what diagnosis we end up with, I need help with this.. 

 

An example: My twins (19) are home from college for spring break. One of them expressed interest in making slime with dd (one of her current interests). She agreed to a certain night. That night came and "big sister" was unavoidably delayed while out with a friend. She texted my dd that she wouldn't have time to make slime with her that night--it would have to wait til the next day. DD melts down. Crying, lashing out at/screaming at me. Pounding her fists on the counter. Throwing things. Shutting herself up in the pantry. I cannot reason with her. When I finally get her to let me into the pantry, her teeth are chattering violently, and she says her skull is vibrating. She can verbalize that she wishes she didn't act this way or feel this way, but it takes a really long time for her to calm down. It's a miserable experience for everyone. She's 11 yrs old btw. 

 

I know there is no quick fix for these meltdowns, but any ideas, advice is appreciated.

 

 

Edited March 19, 2017 by stephensgirls

[MerryAtHope]

(((Hugs))) No advice, but I wanted you to know someone saw this & that I am praying for you and your daughter. I'm sorry you are going through this.

Edited March 19, 2017 by MerryAtHope

[maize]

I can't remember what else you have shared about your dd, diagnosis etc.

 

The DBT skills can be very helpful; I would also look into general health (sleep, eating habits, exercise); my child with the biggest melt down issues is very prone to problems if she is not eating frequently, especially stuff other than plain carbs (though carbs can help her pull out of a meltdown).

 

You may also want to consider anxiety medication.

 

Many hugs.

[popmom]

(((Hugs))) No advice, but I wanted you to know someone saw this & that I am praying for you and your daughter. I'm sorry you are going through this.

 

THANK YOU. This girl is PRECIOUS despite all our struggles. I'm so, so glad God gave her to me. I just want to know how to reach her during these meltdowns. 

[popmom]

I can't remember what else you have shared about your dd, diagnosis etc.

 

The DBT skills can be very helpful; I would also look into general health (sleep, eating habits, exercise); my child with the biggest melt down issues is very prone to problems if she is not eating frequently, especially stuff other than plain carbs (though carbs can help her pull out of a meltdown).

 

You may also want to consider anxiety medication.

 

Many hugs.

 

We finish up evaluations Monday. Anxiety is one of the things the psychologist is looking at. 

 

I would LOVE a magic pill at this point. I'm kidding, sort of. I'm sure this will come up during our results/feedback meeting.

[Innisfree]

THANK YOU. This girl is PRECIOUS despite all our struggles. I'm so, so glad God gave her to me. I just want to know how to reach her during these meltdowns.

Yes, most certainly she is precious.

 

Usually once the meltdown starts, you just have to wait it out. You can help a bit by not increasing stress on her during a meltdown: that is not a time to demand better behavior or lay out consequences, for example. You might need to not talk at all, or it might help if you can quietly tell your dd you understand why she is upset.

 

We found several techniques helpful, over the long term.

 

We found adaptations of meltdown behaviors which we approved for stress-reduction purposes and practiced repeatedly when dd was calm. For example, she tended to tear things up, so we made a big pile of old newspapers and encouraged her to tear them up when she felt upset. This was done as part of ABA and, as I said, practiced a lot. We tore stuff up and threw it around with her, then we all cleaned up. When she did this on her own when she was really upset, we praised her liberally.

 

Once she had a few coping skills and we knew she could use them under stress, we set boundaries to the meltdowns ahead of time. So, tearing designated paper was fine, but tearing other things would result in consequence X.

 

We praised use of good coping skills all.the.time. We did not react to the meltdowns themselves beyond ensuring safety.

 

This has helped here -- well, I'd say immeasurably, only ABA measures everything, lol. I hope you get some good answers from your evaluation and find strategies that work for you.

 

eta: Appropriate medication has also helped.

Edited March 19, 2017 by Innisfree

[PeterPan]

Is your family not on the same page you are with recognizing the autism and what is going on? Because it sounds like they didn't use the best strategies for how to handle unexpected things and change. Until she's more stabilized, you may need to filter and have people go through you. They could have handled that better. The family needs to get onboard with the autism diagnosis and stop pretending it's not happening. Texting major change on a thing they were REALLY, REALLY looking forward to is hard. They could have handled that better. They could have asked you to cover because they'd be late or had you do it with her tonight and then they do it again tomorrow. They could have had you offer her a choice and help her work through it calmly, with something equally preferred tonight to sub.

 

Maybe you already did that. I'm just noting that it doesn't sound like they're onboard. Your family isn't researching as much as you are and isn't learning at the same pace. You can't expect them to, but you might need to intervene to smooth things and help it go better. That gap could increase.

 

Hopefully what will happen is you'll begin with a BCBA who will be trained in LOTS of options. That way they can look at the whole buffet and help you see where to start. Lots of things are good, but sometimes they have to figure out your child's starting point.

 

For my ds, that starting point was social thinking. We couldn't even have those more cognitive, kind of calm down sessions, because we had to back up and do pairing, noticing that I'm thinking things and you're thinking things and I have feelings and you have feelings, etc. It's a process. Lots of stuff that sounds really obvious may not have clicked. So they might do some foundational work to get her READY for those therapies.

 

Yes, they can use meds for anxiety. This sounds like rigidity, not so much the anxiety. Hopefully between the OT and the behaviorist they can help her find a list of calming choices that feel good to her. That's something pro-active you could work on now. Start making a list, with paper, of things she chooses or could chose that are or could be relaxing or calming to her. Just try things, like just when she's in a good mood. Say hey, let's try some things and see how they make you feel and whether you like them. Try different kinds of music, textures, etc. You can have sensory calming. You can have mindfulness for calming. There are some really good apps for calming. Google for lists. I don't recall where all I found mine. We use some that are like games (koi pond, etc.) but some are more traditional, like breathing and counting 10 to 0, color therapy, etc.

 

If you find a list of things she enjoys for calming, you can practice them several times a day, which will be pre-emptive and help keep her more calm AND make their use more natural for when she needs them. Even short little ones where you practice counting down from 10 to 0 and taking three deep breaths can be really good! You can do that anywhere, and practicing it a few times every day will make it comfortable when you need to pull it out in a pinch.

 

The work we've done on retained reflexes has brought a lot of calming here.

[PeterPan]

Yes, we have done what Innisfree is describing. Ripping paper can be very calming! But ripping important papers, well that's no good. Ripping money is even worse, sigh. Yes to having a quiet place they can go, a place where they can shut the door and be safe. The pantry doesn't sound very safe for that. If she's prone to throwing things or banging, might not be safe. A room or a closet or something that you could clear out would be better.

[popmom]

Innisfree...thank you! This is encouraging to me. Unfortunately, I have learned the hard way that "demanding better behavior or laying out consequences" during a meltdown does no good.

 

OhElizabeth, you are correct that my family is not on the same page. They still see her as the spoiled baby of the family. Which is interesting because they ALL see the autistic traits in her. But they are young and it's hard for them to be patient with her--much less anticipate what will cause a meltdown. When I told "big sis" what you said, she said, "but that's not how the world works." Meaning...dd just needs to suck it up and deal. (Big sis is sitting right next to me and knows what I'm asking y'all about.)  (((sigh))). I see both sides of it. 

 

And thank you for your input. I can tell that you all really "get it". 

 

ETA: This idea of "social thinking" is new to me. I am going to research this since I've seen it mentioned before. This is all uncharted territory for me.

Edited March 19, 2017 by stephensgirls

[Innisfree]

My older girl has a hard time with it all, too, even though she does intellectually understand. It's hard, and time and maturity may help. Hugs.

 

Agreeing with all OhElizabeth said about strategies. We found some bedroom modifications very helpful: nothing in the carpentry line, but creating a small, soothing place. We also got a hammock like dd loved in OT. The more things you can do ahead of time to provide regular stress relief, the easier life gets. And, like she said, getting folks to understand that sudden changes really are a neurological insult, not just an excuse for spoiled behavior, will help. Maybe talking about possible changes in plans ahead of time might help: just more regular practice with the idea that things change, and we can have a backup plan. Good luck.

[Guest]

Stephensgirls, Dialectical Behavioral Therapy (DBT), which is a method the book is based on, is a modified version of CBT (Cognitive Behavior Therapy). I have seen the book you linked but have not read it. This is a brief overview of CBT.

 

https://www.beckinstitute.org/get-informed/what-is-cognitive-therapy/

 

You could also look at mindful parenting books, one of the modalities also often incorporated in CBT.

 

You might find this useful:

Current Diagnosis and Treatment of Anxiety Disorders

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3628173/?report=classic

 

CBT is the recommended (evidence based) therapy for anxiety.

 

Regardless of what the final diagnosis will be, she will need strategies that help her cope. As her mom, you know her the best. Think of things that usually calm her. Even offering a hug and reminding her how much you love her can be a big help. Talk to her, show her and tell her how much it saddens you to see her going through this and remind her that she is not alone. Problem solve with her when she is a bit calmer. Find strategies, constructive strategies, that help her through these moments. Make suggestions. She seems to love sensory things; go shopping with her and find little items she can put in a sensory bag to take with her. Offer a shower or bubble bath. These are some ideas.

 

:grouphug: to both of you.

Edited March 19, 2017 by Guest

[Guest]

Pointing fingers at family members does not help. It takes time for everyone to understand and accept. The other kids in the family are not responsible. Things happen in life, unexpected things, and we find ways to deal. Bringing the family together through family discussion is what can be a lot more productive. That’s how you bring others on board; by asking for their help.

Edited March 19, 2017 by Guest

[popmom]

I can't remember what else you have shared about your dd, diagnosis etc.

 

The DBT skills can be very helpful; I would also look into general health (sleep, eating habits, exercise); my child with the biggest melt down issues is very prone to problems if she is not eating frequently, especially stuff other than plain carbs (though carbs can help her pull out of a meltdown).

 

You may also want to consider anxiety medication.

 

Many hugs.

 

How do carbs help? I've been hesitant to offer food as a way to soothe.

 

ETA: I'm up WAY too late. lol  Girls home from college=late night talks. 

 

not a bad thing, but I'll pay for it in the morning.

Edited March 19, 2017 by stephensgirls

[popmom]

 Even offering a hug and reminding her how much you love her can be a big help. Talk to her, show her and tell her how much it saddens you to see her going through this and remind her that she is not alone. Problem solve with her when she is a bit calmer. Find strategies, constructive strategies, that help her through these moments. Make suggestions. She seems to love sensory things; go shopping with her and find little items she can put in a sensory bag to take with her. Offer a shower or bubble bath. These are some ideas.

 

:grouphug: to both of you.

 

Thank you so much for the links. 

 

I'm already doing a lot of this--letting her know how much it saddens me that she's going through this, hugs and soothing touch (when she'll let me), etc. But we don't have any strategies in place, and I feel like she would definitely be agreeable to some of those sensory things. I will absolutely have a talk with her when she is calm to come up with things to help when she feels out of control. She has told me  that music calms her. 

 

I can't even believe that she's 11, and I'm just now trying to be proactive about this. We've just been surviving all these years. What was I thinking? 

 

I was thinking she was NT--that's what I was thinking. A light bulb went off last fall, and I see her in a completely different light now. 

[Guest]

Stephensgirls, please stop beating yourself up :grouphug: It doesn't help you either!

 

I was looking for mindful parenting resources (mine is for ADHD) to suggest and stumbled across this:

Connected Kids: Help Kids With Special Needs (and Autism) Shine With Mindful, Heartfelt Activities by Lorraine Murray

https://www.amazon.com/Connected-Kids-Special-Heartfelt-Activities-ebook/dp/B00M476A3S/ref=sr_1_1?ie=UTF8&qid=1489906282&sr=8-1

It was at a reduced price on Kindle so I bought it :) I'll check it out and share some tips.

With my 8 yr old, just holding him and doing deep breathing helps tremendously. I talk to him a lot too. We are at a stage where he is verbalizing his feelings and it has become easier to guide him through and work with discussion. I remind him to stop and think first. I remind him that getting angry or frustrated doesn't solve problems. I don't modify his behavior. I help him in the moment, helping his brain get unstuck and problem solve.

 

Have a good night. Try to get some sleep :grouphug:

Edited March 19, 2017 by Guest

[maize]

How do carbs help? I've been hesitant to offer food as a way to soothe.

 

ETA: I'm up WAY too late. lol Girls home from college=late night talks.

 

not a bad thing, but I'll pay for it in the morning.

My dd seems to be quite sensitive to blood sugar fluctuations, and meltdowns are clearly more likely with her if her blood sugar is low. For maintaining steady blood sugar overall, protein and fat work better than carbs. But only carbs can raise blood sugar quickly so she needs those when she is crashing. Ideally with some protein/fat at the same time so she doesn't experience a quick rise in blood sugar followed by an equally quick drop. Edited March 19, 2017 by maize

[geodob]

Your DD's meltdowns, could be a 'fight or flight response'? Starting with a 'fight response', and then 'flight' to the pantry?

Where the fight or flight response, is caused by the hormones adrenaline and nor-adrenaline.

 

In regard to medications, their is one called: Clonidine. Which is also used to treat Anxiety and ADHD.

But its specific action, is to inhibit the release of Adrenaline and Nor-adrenaline. 

 

So that Clonidine could be worth trying? 

If it does reduce the meltdowns, then it would confirm that Adrenaline and Nor-adrenaline and the 'fight or flight response'.  Are what is causing the meltdowns?

[PeterPan]

Innisfree...thank you! This is encouraging to me. Unfortunately, I have learned the hard way that "demanding better behavior or laying out consequences" during a meltdown does no good.

 

OhElizabeth, you are correct that my family is not on the same page. They still see her as the spoiled baby of the family. Which is interesting because they ALL see the autistic traits in her. But they are young and it's hard for them to be patient with her--much less anticipate what will cause a meltdown. When I told "big sis" what you said, she said, "but that's not how the world works." Meaning...dd just needs to suck it up and deal. (Big sis is sitting right next to me and knows what I'm asking y'all about.)  (((sigh))). I see both sides of it. 

 

And thank you for your input. I can tell that you all really "get it". 

 

ETA: This idea of "social thinking" is new to me. I am going to research this since I've seen it mentioned before. This is all uncharted territory for me.

 

There's a FB thing you can subscribe to, I think called Autism Discussion Page. Go search for it. If you're not on FB, go join it.

 

See, here's the thing. Until you bring in a behaviorist and workers, the people who DON'T get autism in your house are outnumbering the people who DO. That means YOU are the target and blame point and scape goat of everything. You've got all these siblings of this dc who feel very free to have an opinion and criticize your parenting. They aren't quite thinking it through that way, but that's what they're doing. And your dh probably has thoughts about all this. YOU are the one reading, learning, and shifting in your understanding. They've been left behind. 

 

When you bring in the behaviorist, they'll help you sort out a plan and what to do first (meds, interventions, etc.). You could consider in-home workers or sending her to an autism school. We use in-home workers.

 

Here, this book comes on kindle. You can buy it and read it today. It will change your world.

Stop That Seemingly Senseless Behavior!: FBA-based Interventions for People with Autism (Topics in Autism) - Kindle edition by Beth Glasberg. Health, Fitness & Dieting Kindle eBooks @ Amazon.com.

Edited March 19, 2017 by OhElizabeth

[popmom]

Geodob, I will look into that med. When dh and I were talking to the psychologist, she picked up on that Libby is probably experiencing anxiety even while she is engaged in her special interest. That's why she sometimes has a meltdown if a recipe for slime doesn't turn out right. 

 

Canadian Mom, thank you. This-- "I help him in the moment, helping his brain get unstuck and problem solve." That's what I would like to be able to do for my dd.

 

Elizabeth, dh is definitely coming around. He's seeing it now. The *highly successful college students* will have to be educated.

 

Right now trying to figure out if I join that Facebook group, will it show up on all my friends' timelines that I joined the autism group? It's not at all that I'm embarrassed--I just want to protect dd's privacy. Only a few of my friends know about our struggles and the evaluations. 

[maize]

I think there is a setting on Facebook to choose whether you want your group memberships to be public or private.

[PeterPan]

Yup, you can change your FB settings so your likes don't show, etc. While you're in there, you can also look up TACA, Autism Classroom News, Omazing Kids, etc. I'm not saying I agree with everything from TACA or whatever, but getting in those loops will let you keep up to date on new things, see free apps, and get free articles on helpful topics. They're ones I use.

[kbutton]

I know you have posted a lot before, and I remember parts and pieces. It does sound like you probably have something autism-related going on. I have heard good things about the book you mentioned. This may be totally irrelevant, but I thought I would toss it out there in case it turns out to be helpful down the road.

 

Along the blood sugar lines, if you notice other physical symptoms that come with the anxiety (the teeth chattering could be adrenaline, could be body temperature, etc.), and typical things have been ruled out or dealt with (hypoglycemia, etc.) consider some kind of elimination diet if you can swing it. It can be grueling, but food sensitivities that don't rise to the level of "allergies" can still be a really big problem. I don't have this with my children--it's my body that does this. I have bursts of anxiety and such that are food-related. It got much better when I went gluten-free, but there are other things that have started tripping the anxiety in more recent years. The physical signs are sometimes really subtle or happen later, but one of them is that my body temperature completely tanks. I've had it drop so low that our digital thermometer won't register it. Then it bounces back up. I have not had a satisfactory explanation from a doctor about all of this, but food is a big part of it for me that I figured out from trial and error. I also suspect that my heart rate and BP get wonky as well (usually later, not at the same time) because I will spike short-lived but intense headaches that feel like the ones I got when my BP was spiking during pregnancy. I am trying to catch this with a BP cuff and take note.

 

Antihistamines help relieve my symptoms faster (sometimes entirely if I am avoiding known triggers), so you could potentially try those over the counter. You would not need an Rx for something very standard like Benadryl or Claritin. Not everyone responds equally to all antihistamines, so it could take some trial and error (Zyrtec works for 2 of 4 people in our house, for example). Benadryl fast melts might be a good option because they dissolve in your mouth (helpful during a tantrum), and you can keep them at hand easily in your purse or pocket. Also, H2 blockers, like Pepcid, can help too.

 

My allergist has been helpful in regard to meds at least--he might not be able to say definitively what's going on, but he gave me the green light to mix and match and take higher than normal doses as necessary. But, if the standard dose helps at all, then you might be on to something and can get someone to help you sort it out.

 

Histamines are known to be part of how brain chemistry works.  

[Guest]

I'll probably be back and forth so will add some points in separate posts.

About meds, it's entirely up to you how you wish to go. Temple Grandin does not recommend meds for kids unless absolutely necessary. She, herself, did not go on meds for her anxiety till she was 20. In the link below she discusses meds and other topics found in her books.

http://www.templegrandin.com/faq.html

Meds are something that you and your husband need to discuss, if they are recommended by the doctor. I won't voice personal opinions because every child is different and I am not qualified to make recommendations for or against them.

Back a bit later...

Edited August 17, 2017 by Guest

[Guest]

A quote from Temple Grandin:

“People are always looking for the single magic bullet that will totally change everything. There is no single magic bullet.â€
— Temple Grandin

If anyone tells you they have found it, don't believe them.

It has taken lots of reading, lots of time, and lots of trial and error to get to where we are today. We still have a long road ahead.

Edited for privacy. 

Edited August 17, 2017 by Guest

[maize]

When considering medication, I ask two primary questions:

 

1) what are the side effects of medicating?

 

2) what are the side effects of not medicating?

 

Medication side effects are easy to look up. Side effects of not medicating must be carefully thought through. A child (or adult) who is in a state of constant stress, for example, experiences many detrimental physical and psychological side effects.

Edited March 20, 2017 by maize

[Guest]

Bill Nason, of the Autism Discussion Page, has brought together the main topics from his Facebook account into two books. I own the green one. I don't do Facebook so I don't bother with the Facebook page. You could check your library if you don't really want to join.

 

https://www.amazon.com/Bill-Nason/e/B00JAKU6W8/ref=sr_ntt_srch_lnk_1?qid=1489972496&sr=8-1

Edited March 20, 2017 by Guest

[Guest]

Stephensgirls, I just wanted to explain that the challenging situations we built towards with time. Any daily situation though can come with its own set of challenges, and we work through that as well. It's a journey.

[Lecka]

Iirc Temple Grandin also credits medication with saving her health bc her body was being wrecked without medication, and that she wouldn't have been able to function in life without it.

 

I don't have a quote, that is just a summary of what I remember.

 

Also I went to see her speak and was able to go to a lunch with her earlier this year, and my impression was that medications like.... I am blanking on the name but one that is given for aggression (not anxiety) is the one that she is much more skeptical about it, and very concerned about kids being on unnecessarily high dosages, and then starting more medication to deal with the side effects.

 

I am blanking on the name but can probably come and add it back. (Risperdal. She was not blankety against it, but she had a lot of concern about Risperdal.) (That was my impression at least.)

 

Good luck.

 

I also heard a speaker Brenda Smith Myles and I thought she was great. She has some books you might look through and see what you think.

Edited March 20, 2017 by Lecka

[geodob]

Stephensgirls, you wrote: "When dh and I were talking to the psychologist, she picked up on that Libby is probably experiencing anxiety even while she is engaged in her special interest. That's why she sometimes has a meltdown if a recipe for slime doesn't turn out right."

But rather than 'anxiety', she might be 'strongly motivated'?

 

What we know as 'motivation', occurs at the level of each our nerve cells and neurons.

Where each neuron has an enzyme, that creates a molecule called 'Nor-Adrenaline'.   (Normal-Adrenaline.)

Which sets off a chain reaction along our neural pathways.

It is this that we sense as 'motivation'.

 

But this enzyme keeps producing Nor-Adrenaline molecules in our neurons.

Which will accumulate.  So that another enzyme, removes it. To make space for more N-A molecules.

 

Though problems can occur with this 'process'?

Firstly with the enzyme that creates the N-A.  

One problem is with an under-production of N-A by the enzyme.  Where people will lack motivation.

The second problem, is with an over-production of N-A.  Which can cause extreme motivation, that can appear as anxiety.

 

But we can also have a problem with the other enzyme, that removes the N-A?

Is that it may not be removing it quick enough.  

Which will cause a build up, that can cause hyper-motivation?

 

So that what was described as 'anxiety while she is engaged in her special interest'?

Could in fact, be 'hyper-motivation' ?

 

With medications like Clonidine?  They have an 'inhibitory' effect on the neuron receptor where N-A is produced.

(Which is called the A-2 Alpha-2 Receptor)

So that if you tried Clonidine and it has a positive effect?

Then it would identify that Nor-Adrenaline is an issue.

 

To understand your DD's meltdowns?  Perhaps you could simply recall, what it is like. When you are involved in an activity, which you are motivated with?  But then something suddenly disrupts you ?  Which can be very distressing.  

Though this 'distress', can cause the production of 'Cortisol'.

Cortisol causes a Nitrogen atom to be removed from Nor-Adrenaline.  Which turns it into Adrenaline, causing the fight or flight response.

 

Though if their is already an oversupply of Nor-adrenaline?

Then this will change into an excessive amount of Adrenaline.

 

But what needs to be appreciated, is that this neural process happens very quickly.

It takes less than one tenth of a second, for a molecule of Nor-Adrenaline and Adrenaline to be made an enzyme.

So that Adrenaline will cause a reaction, before we have time to think about it.

Which presents a problem with a 'behavioural approach'?

As it happens before one has time to think.

 

Though with medications like Clonidine. Rather than long term usage?

It could be used in combination with a Behaviour program.

As the inhibitory effect of Clonidine, will her time to consider her response before she reacts.

So that she practice new behaviours.

 

Then the dosage of Clonadine could be gradually reduced.

Where the crucial thing, is that she will have gained greater control over her Nor-Adrenaline and Adrenaline. 

Giving her time to consider her response, to the unexpected?

[popmom]

All of this is very interesting to me. Maybe a bit overwhelming. I have a lot to consider. 

 

DD had the autism piece of her eval today along with some neuropysch stuff to look at possible attention issues.

 

I did join the discussion page on fb. I read through several articles that seemed applicable to our situation. Thanks to everyone for sharing. I'm about to email the psychologist with some questions about what she was looking for today.

[Guest]

From the link I provided above, which is from Temple Grandin's website:

"There are way too many powerful medications with severe side effects casually given out to young children. I am very concerned about possible long-term damage to the child’s developing nervous system. This is especially a concern when powerful antipsychotic drugs are given."

She speaks in general terms first then gets more specific about specific drugs. I am quoting her words, not my own. There's more, for anyone that wants more specific information about specific meds. There are more details in her books *Thinking in Pictures* and *The Way I See It*. I own both.

In the link she moves on to speak of older children and adults. She does acknowledge that they may be needed in some cases and I clarified that in my previous post.

Also, she never said that her body was being wrecked without medication. I own 5 or more of her books and can quote her words. She describes how, when she became an adult and had to face the responsibilities that come with it, it heightened her anxiety. This forced her to take meds. When you are dealing with sensory issues of your own (like Temple Grandin has all her life) you know what she is talking about.

Here's another quote from the same link:
"There are some older children and adults who will need conventional medication to control behavior. My anxiety and panic attacks were 90% eliminated with a low dose of antidepressants. Often a very low dose of a drug such as Prozac (fluoxetine) works for anxiety. If the dose is too high, it may cause agitation and insomnia."

Here's the link again for anyone interested. It is under the subtitle *Medications*:
http://www.templegrandin.com/faq.html

Edited August 17, 2017 by Guest

[Mom28GreatKids]

See, here's the thing. Until you bring in a behaviorist and workers, the people who DON'T get autism in your house are outnumbering the people who DO. That means YOU are the target and blame point and scape goat of everything. You've got all these siblings of this dc who feel very free to have an opinion and criticize your parenting. They aren't quite thinking it through that way, but that's what they're doing. And your dh probably has thoughts about all this. YOU are the one reading, learning, and shifting in your understanding. They've been left behind.

 

When you bring in the behaviorist, they'll help you sort out a plan and what to do first (meds, interventions, etc.). You could consider in-home workers or sending her to an autism school. We use in-home workers.

 

Here, this book comes on kindle. You can buy it and read it today. It will change your world.

Stop That Seemingly Senseless Behavior!: FBA-based Interventions for People with Autism (Topics in Autism) - Kindle edition by Beth Glasberg. Health, Fitness & Dieting Kindle eBooks @ Amazon.com.

This, this, and this. Not autism here, but same concept nonetheless. Until I had a Dr. a Psych and a behavior therapist come into the picture and confirm what was going on, follow their suggestions, and get results, ds's problems were my fault. Yep. Mom, especially homeschool moms get a lot of crap when kid isn't conforming.

[Guest]

Stephensgirls, I have linked this in a couple of other threads. It is not one sided and is a very good read, I feel.

The controversy over autism’s most common therapy
https://spectrumnews.org/features/deep-dive/controversy-autisms-common-therapy/

Also, you don't need to jump into any decisions immediately. Don't let anyone put pressure on you. Make your own decisions with your own child and family in mind.

:grouphug: I know how overwhelmed you must feel! Take some time for yourself and your family.

You will be in my thoughts and prayers.

Edited August 17, 2017 by Guest

[Guest]

I had to fix the link. It is working now.

[popmom]

I really appreciate all the links and info. I have to have something for my brain to do while I'm waiting on results, so I plan to do some reading. I am already VERY familiar with Risperidone, SSRIs, benzos, etc. Both approved uses and off label. I also know first hand the seriousness of possible side effects. (I had seizures from taking a trycyclic antidepressant in college. Prozac made me sleep through 2 quarters of college.) Going the medication route is not taking the easy way out or a magic pill. It's absolutely right for some and not for others. It takes a lot of trial and error to find what works and at what dose. It's not for the faint of heart. I am taking Zoloft right now, and it has been a lifesaver for me, but I would have to think LONG and HARD before letting dd try a med. So, yeah, I joked about a magic pill earlier...but I know first hand such a thing doesn't exist. 

 

And it's not just about side effects for me. It's about things like--is this going to be a long term thing? Short term? How difficult is it to discontinue the drug if it "poops out"? Discontinuation comes with it's own side effects. How does it affect the patient when medication after medication fails to help what its intended to help? (This is seriously depressing on so many levels) It's such a complicated, loaded, emotional issue. And probably some of this isn't even applicable to certain symptoms that y'all might be dealing with that are highly treatable and consistently respond well to meds. 

 

Well, I was rambling. I wish I could say I didn't have so much personal experience with this. I have a love/hate thing with meds. ;)

[popmom]

Also want to say how grateful y'all are here. I really appreciate the support and encouragement! I feel like this is a relatively safe place. lol Y'all ROCK!

[Guest]

deleted for privacy

 

 

Edited August 17, 2017 by Guest

[popmom]

Canadian Mom, you said, "Mindful parenting has taught me a very valuable lesson. I first had to start with myself."

 

This will be me. I find this very helpful. And daunting. Thanks for sharing.

[Guest]

Canadian Mom, you said, "Mindful parenting has taught me a very valuable lesson. I first had to start with myself."

 

This will be me. I find this very helpful. And daunting. Thanks for sharing.

:grouphug: I know! It definitely is hard! Edited March 20, 2017 by Guest

[Guest]

Ooops!

Edited March 20, 2017 by Guest

[kbutton]

Iirc Temple Grandin also credits medication with saving her health bc her body was being wrecked without medication, and that she wouldn't have been able to function in life without it.

 

 

I have heard her say in an interview that she wishes she would've taken anxiety meds earlier in life. It was on the Coffee Klatch network (probably the Bright Not Broken show). It's easier to find specific shows via podcast than their website of archived shows.

[Guest]

A quote from Temple Grandin. Here she talks about the reasons that caused her anxiety and finally forced her to meds.

 

"Dr. GRANDIN: Okay. Let's talk about the fear problem. Fear was my main emotion until I started taking anti-depressant medication. And I was one of the people where, as I got older, the fear got worse and worse. So I can really relate to an animal getting, you know, scared and traumatized. Some of these fears these students have are sensory based. You know, when I was a little kid and the school bell went off, it hurt my ears like a dentist drill. You know, maybe the kid sees a cell phone and the ring on that cell phone hurts that kid's ears.

 

So, if he just sees that cell phone he's going to panic because it's a dangerous thing that might go off. Things like microphones are dangerous things because you never know when they might feedback and squeal. There's a lot of different things that can set off this fear reaction. And I would probably need to talk to your wife a whole lot more to figure out just which situations they're getting the fear reaction in. But a lot of this is sensory.

 

And an adult or a child that has a tantrum and just goes ballistic every time you take him in a big supermarket, that is usually due to sensory overload. They may not be able to tolerate smells in the detergent aisle, the fluorescent lights flicker and make the supermarket look like a discothèque, or it may be just noise overload and they feel like they're inside the speaker at the rock and roll concert. But these sensory problems are very variable from really mild to just overwhelmingly bad."

 

Found here:

A Conversation with Temple Grandin

http://www.npr.org/templates/story/story.php?storyId=5165123

Edited March 21, 2017 by Guest

[PeterPan]

Like geodob said, there are some other meds besides anti-depressants. But I wouldn't assume that's your starting point. Behaviorist is your starting point and seeing how far you can get with that. 

 

Some people get significant progress, worthy progress, with nutritional stuff. Even basic things like cutting out something you realize they don't digest well or cutting out milk or food colorings. Sometimes, for some kids, these things make a big difference! You can also read about methylation and look into sam-e. 

 

But really, I keep saying this, broken record here, but I wouldn't assume meds are your starting point. Let the behaviorist say that. They really might want to see how far they could get her in say 3-6 months of behavioral work. Do you have anyone else in the house who is in danger? Can you arrange for that person to have somewhere else to be, send them to school, whatever? Or do the flip and keep the NT sibling home and send this SN dc to school. Having some separation gives the NT sibling a break. It's really hard to live with an ASD sibling, and it's really, really hard to be around when people are working on behavior. There are likely to be extinction bursts, etc. That's not stuff you medicate out. It's stuff you tough out by working on behavior. And it ain't fun. But then you come to the other side and have peace.

 

I would ply your mind on school options for one or the other child. I'm just being frank. Look into options for both and then decide which one should go when you get the results of the evals. Might be happier to think about than meds. And I agree with you on the side effects. Some people who have the scrips choose not to use 'em. You might find that with the behavioral work and maybe some aggressive interventions (reflex work, etc.), she gets to a place where she doesn't need them. That's what we're seeing with my ds.

[Jean in Newcastle]

I don't have the specific knowledge that so many of the ladies here have. I just have my experience with my now 19 year old son with ASD and ADD. Those tween/early teen years were pretty intense because hormones intensified everything. But they come through it. The hormones start to calm down. The coping strategies start to kick in more.

 

Ds still has meltdowns- those last weeks of a college quarter can be pretty bad. But he has more control than he had at 11. We no longer have holes in the wall.... I have also (mostly) learned when and how to back off. It's hard and I think pretty individual to find that mix of backing off so that you aren't provoking or prolonging the meltdown while also providing some support (if necessary) so they don't feel all alone.

 

What works/worked for us:

 

1.. Anticipate what you can. Preparing someone for a transition or unexpected changes is not sheltering them from the real world. It's helping them to be successful now while they are still in the maturing process. And it is helping them to manage those big feelings and chemical reactions in their body.

 

2..Give them scripts. Older people can cope better with stresses and surprises partly because we have better scripts for self talk. I did a lot of "now you know that plans might change. If they do, we say 'Oh well. We can do it tomorrow. ". (This is simplified but gives you the gist. ). For Ds I was giving the same scripts for a YEAR before one day as I steeled myself for the meltdown and he said "Oh well. We can do it tomorrow. ". You could have knocked me over with a feather!

 

3.. Know the triggers. This is partly no. 1 with anticipation but includes knowing how factors like hunger, menstrual cycles for girls, holidays, outside stressors etc. affect things. I have taught Ds to start to see these factors himself. So he tries to lighten the load to the minimum during stressful times. Or he goes running to help his body to manage that excess adrenaline.

 

There is probably more but that's all I can think of off the top of my head.

 

 

Sent from my iPhone using Tapatalk

[Mom28GreatKids]

Meds first might make behavior intervention more effective. . . make the child more teachable. This was our experience.

[Guest]

Anxiety, much like sensory issues that can cause anxiety for some of us, is variable. It can also vary in the same person at different times of his life. We cannot assume the level of functioning or need for meds from a few posts by a parent. Nor can we base our assumptions on our own child.

Edited August 17, 2017 by Guest

[geodob]

Stephensgirls, with Clonidine I would suggest only a short term usage.

Where it could be taken in the same way, that it used to help people 'quit smoking'.

Where it reduces the 'craving', and the dosage is fairly quickly reduced.

 

If we look at these 'melt-downs', as sudden surge of Adrenaline. In response to a sudden change?

What Clonidine does, is to reduce the normal levels of Adrenaline.

(On our nerve cells, we have what are Alpha 2 Receptors, which produce Adrenaline.  So that Clonidine is a drug that lowers the normal level of Adrenaline.)

 

So that if your DD has a lower level of Adrenaline, when presented with a 'sudden change'?

Her level of Adrenaline, will only be raised to a level. That raises her attention.

But doesn't reach a level, that causes a 'fight or flight response'.

 

Which presents an opportunity, to practice behavioural responses, to sudden changes.

Perhaps starting with more minor changes?

Where she experiences a more moderate Adrenaline response to change.

So that she can then pause, and consider her response.

 

Crucially, this provides her with a different response to 'sudden changes'.

Which is happening at the level of her nerve cells/ neurons.

That are operating in a different way.

The Clonidine is then gradually reduced, while continuing to practice behavioural responses.

That is basically retraining the way that her nerve cells/ neurons, react to sudden changes.

 

While Adrenaline can cause a 'fight or flight response'.

Our main use of it, is to regulate our 'level of motivation'.

So that it is important to be able to control its direction, as well as its level.

[popmom]

very interesting. I can see how that could be a very valuable tool.

[Guest]

 

 

I was looking for mindful parenting resources (mine is for ADHD) to suggest and stumbled across this:

Connected Kids: Help Kids With Special Needs (and Autism) Shine With Mindful, Heartfelt Activities by Lorraine Murray

https://www.amazon.com/Connected-Kids-Special-Heartfelt-Activities-ebook/dp/B00M476A3S/ref=sr_1_1?ie=UTF8&qid=1489906282&sr=8-1

It was at a reduced price on Kindle so I bought it  :) I'll check it out and share some tips.

 

 

Stephensgirls, just following up on this. The book did not turn out to be what I expected. It included too many meditation activities, of the type I don't get into, so I returned it for a refund.

 

Just thought I would let you know since I had said I was going to share tips.

Edited August 17, 2017 by Guest

[popmom]

Stephensgirls, just following up on this. The book did not turn out to be what I expected. It included too many meditation activities, of the type I don't get into, so I returned it for a refund.

 

Just thought I would let you know since I had said I was going to share tips.

 

Thanks for updating and letting me know!