At the very end of my rope...

[mom2bbj]

Hi,

 

I am new to posting on the Special Needs Threads, but have been lurking (and learning) for a while. I need some advice

 

My dd (11) has been dx with CAPD/APD. She was dx'd 2 years ago. We are homeschooling for the first time this year, we started in July and I feel we have been fairly successful - so far. This is definetly what she's needed for a long time. BUT her behavior has dramatically changed.

 

She can not handle the word "no" any longer. At the park, wants to "run to the bathroom" (out of sight, half way across the park). I said "no", but we will leave right now and I'll take you there. Loaded up the boys (1 & 3), drove to the bathrooms all the while she was having a melt down because " I never let her do anything fun" "She hates her life" on and on and on. This is continous throughout my day. It doesn't matter what it is. She was on VACATION with her aunt - for some "special girl" time, her aunt spent over $800.00 for 3 days of "fun", told her "no" she couldn't go into a haunted house, because dd had already choose to do the maze...dd ran away from my sister, ended up having to notify the police that she was missing (gone almost 2 hours). I could go on with tons of examples. Independently she just sounds like a brat who doesn't like "no", but it is so much more than that.

 

She also has some separation anxiety issues, mood swings, she doesn't remember much when she has hit a certain point in her meltdown.

 

Its beyond a parenting/discipline issue. And it's ESCALATING. I have done an intake at the only 2 places that deal with adolscent behavior/pyschiatic issues, but neither can even see her before November. I can't make it that long.

 

Advice? Suggestions?

 

Please! any thoughts would be greatly appreciated

 

TIA

Vickie

[LizzyBee]

No advice, just :grouphug::grouphug:

[PollyOR]

Another :grouphug:. I don't have any answers either. Preadolescence was very rough with my oldest. You are doing the right thing by getting help. I wish we had.

[Tiramisu]

I wish I had something helpful to offer. Here are some unhelpful ideas:

 

Maybe the adjustment to homeschooling is tough on her, especially if she's prone to anxiety, and she's internalized it. I do think hsing is an especially good choice when you're dealing with CAPD; she just may need more time to work through it.

 

It could be depression. Depression can show itself differently in kids than adults. You can see anger, meltdowns, or rages.

 

It could be hormonal.

 

You could try something natural. One mom here recommended 5HTP and cod liver oil for issues that sound a little similar. I've used a high EPA fish oil and feel like it does even out the monthly ups and downs. A probiotic couldn't hurt either.

 

I would keep a diary of the behavior so if you really can't get in until November, you'll be extremely well prepared for that visit. Of course, you could call every week and check for cancellations, and they might become sympathetic and bring you in if something opens up.

 

This is an extreme thought, so forgive me if I go over the edge of reality, but as you keep the diary of behavior take note of any swings in energy level, like having difficulty sleeping and then spending more time sleeping. I have a friend who was diagosed with bipolar recently and it didn't look like I thought bipolar looked like. And I was told that some people with bipolar tendencies can have more manic or hypomanic episodes in summer. Maybe the irritability, the reaction to "no's" and the running off could be mania in a child, along with the meltdowns and the not remembering.

 

Do I think it's bipolar? No. Honestly, it's probably not. But if you go into a psychiatrist and they're thinking about medication, you'll want to give them all the information you can, and bipolar is something that you have to be really careful about when it comes to medication because SSRI's can trigger it.

 

I'm sorry to end with an unhappy possibility. But it's something worthwhile to think about before the doctor's visit. If she's never been this way before, I'm betting it's an adjustment thing with a little hormones mixed in. I know from my own experience that CAPD impacts communication, so she could be having a tough time emotionally and not know how to express herself in a better way--it's just what it is and has nothing to do with parenting.

 

:grouphug::grouphug::grouphug:

[dbmamaz]

You can make it that long! but if i were you, i wouldnt leave the house much :glare:

 

I always say this, but some of my kids behavior problems got better on a no-additives, no gluten, no dairy diet . . its a lot to try, but you could at least try it for a few weeks between now and november

[MomatHWTK]

Some online resources:

Bipolar Information: http://www.jbrf.org/pdf/CBQ_Development.pdf

Bipolar Questionnaire: http://www.jbrf.org/cbq/cbq_survey.cfm

Scoring Guidelines- http://www.jbrf.org/pdf/cbq_srv.pdf

http://www.psbmed.com/pdf/teenChildBipolarQuestionnaireForm.pdf

Vanderbilt Assessment Tool:

http://www.cap4kids.org/new_york_city/download/ADHDParent.pdf

Scoring- http://www.nichq.org/toolkits_publications/complete_adhd/07Scoring%20Instructions.pdf

 

Worksheets and manuals:

http://www.psychologytools.org/download-therapy-worksheets.html

http://www.kpchr.org/research/public/common/getdocpublic.aspx?docid=53468A11-CDDF-4E20-A98F-9EEA4DE94C39

 

 

(The adult materials, I read and use as a guide to work on anger management with the kids.)

 

Even if you are not dealing with Aspergers, I've found information on how to handle an Aspergers' meltdown to be helpful. Some of the steps are very counter-intuitive and are targeted toward avoidance and cool down.

 

I would also be calling the centers and asking to be put on the wait list in case an earlier appointment comes up.

[chiguirre]

On a positive note, GW was AWFUL when he was 11. I really thought we'd have to find him a residential placement. Then, he grew 8 inches and just matured and mellowed out completely. Now that he's 13 I can actually imagine him being able to do sheltered employment and participate in the community instead of fearing he'd end up in Hannibal Lector style restraints (okay, I'm exagerating, but not by much!) Geezle's the one giving me a run for my money now, but at least I have the hope that he'll sort himself out in a year or so too. Behavioral issues combined with tween rebellion is just no fun at all.

 

:grouphug:

[merry gardens]

Hi,

 

I am new to posting on the Special Needs Threads, but have been lurking (and learning) for a while. I need some advice

 

My dd (11) has been dx with CAPD/APD. She was dx'd 2 years ago. We are homeschooling for the first time this year, we started in July and I feel we have been fairly successful - so far. This is definetly what she's needed for a long time. BUT her behavior has dramatically changed.

 

She can not handle the word "no" any longer. At the park, wants to "run to the bathroom" (out of sight, half way across the park). I said "no", but we will leave right now and I'll take you there. Loaded up the boys (1 & 3), drove to the bathrooms all the while she was having a melt down because " I never let her do anything fun" "She hates her life" on and on and on. This is continous throughout my day. It doesn't matter what it is. She was on VACATION with her aunt - for some "special girl" time, her aunt spent over $800.00 for 3 days of "fun", told her "no" she couldn't go into a haunted house, because dd had already choose to do the maze...dd ran away from my sister, ended up having to notify the police that she was missing (gone almost 2 hours). I could go on with tons of examples. Independently she just sounds like a brat who doesn't like "no", but it is so much more than that.

 

She also has some separation anxiety issues, mood swings, she doesn't remember much when she has hit a certain point in her meltdown.

 

Its beyond a parenting/discipline issue. And it's ESCALATING. I have done an intake at the only 2 places that deal with adolscent behavior/pyschiatic issues, but neither can even see her before November. I can't make it that long.

 

Advice? Suggestions?

 

Please! any thoughts would be greatly appreciated

 

TIA

Vickie

With APD/CAPD, there can be the question if they really understood what you said. Are you sure that she's fully comprehending that you said, "No' before she runs off to do her own thing? Is she missing some--or alternately--perceiving something in your voice tone-- different than you intend?

 

I'm personally trying to develop more positive parenting by avoiding saying no. (Hear me out!) Relay the same information in a positive way. For example:

She says: "Mom, I'm going to the public bathroom that's a mile away from your sight."

You say: "We'll come too!"

 

I tried to think up a very short response. With APD/CAPD, work on minimize words to avoid misunderstanding. My husband can keep his instructions to the kids down to a single word or two. I often talk and give instructions in entire paragraphs-but I'm working on changing that too.

 

Think of the Charlie Brown adults talking--that's what a lot of kids hear! Despite all your love and good intentions she might only be hearing you say, "Blah, blah, blah, no, blah, blah, blah!" Limit the words and phrase things in a positive way.

 

Also--while I'm thinking about negative vs. positive, if her audiologist hasn't ever checked on what tone of voice she percieves, you might investigate to find out if she's picking up on even more negativity that you intend. I have a child with mild APD and I've read that in some instances, people with APD can percieve unintended negativity/sarcasm/disgust/criticism as they process the sounds of voices improperly.

[Tiramisu]

With APD/CAPD, there can be the question if they really understood what you said. Are you sure that she's fully comprehending that you said, "No' before she runs off to do her own thing? Is she missing some--or alternately--perceiving something in your voice tone-- different than you intend?

 

I'm personally trying to develop more positive parenting by avoiding saying no. (Hear me out!) Relay the same information in a positive way. For example:

She says: "Mom, I'm going to the public bathroom that's a mile away from your sight."

You say: "We'll come too!"

 

I tried to think up a very short response. With APD/CAPD, work on minimize words to avoid misunderstanding. My husband can keep his instructions to the kids down to a single word or two. I often talk and give instructions in entire paragraphs-but I'm working on changing that too.

 

Think of the Charlie Brown adults talking--that's what a lot of kids hear! Despite all your love and good intentions she might only be hearing you say, "Blah, blah, blah, no, blah, blah, blah!" Limit the words and phrase things in a positive way.

 

Also--while I'm thinking about negative vs. positive, if her audiologist hasn't ever checked on what tone of voice she percieves, you might investigate to find out if she's picking up on even more negativity that you intend. I have a child with mild APD and I've read that in some instances, people with APD can percieve unintended negativity/sarcasm/disgust/criticism as they process the sounds of voices improperly.

 

:iagree:This is really good advice. Sometimes we say too much and sometimes we rephrase things when APD kids don't understand us. With some types of APD, it's much better not to rephrase. Sometimes, we gesticulate, as a way to supplement our instructions with visuals, and with some types of APD, that actually causes confusion. I could see at the park and at the activity with your sister, how those environments could have overloaded her, both in background noise and competing visual input.

 

Also, different types of APD have the other problem that Merry talks about here. They are impaired in picking up the "mood" or "emotion" of speech. If you have a report from your evaluation, you might be able to find that indicated there. I can't remember the name of a specific test. It would be something like the high-low tone testing. If there's a dichotic listening section, and there should be, you may see a strong right ear advantage in competing words. Most everyone has a right ear advantage but you might see a stronger one. You also may see a little lack of talent in the music area, too.

 

I'm not an expert and all of this is just coming off the top of my head, but they are little things you can look for in trying to understand what might be behind any communication issues and what you might do to help.

 

I also really like the book The Explosive Child. It might help validate your intuition that this is not a parenting or discipline issue, and will give you hints to help you when things get tense and also help your dd better deal with frustration. It not about bad kids. It's about kids who are sensitive with low frustration tolerance who need to be helped along in managing their natural reactions to situations and their environment.

Edited September 2, 2012 by NJKelli

[mom2bbj]

Ladies,

Thank you all for your time in answering my SOS!!!

 

Chiguirre, LizzyBee & PollyOR - thank you for the encouragement and hugs!

 

NJKelli - I will start a journal today. I definetly want to be prepared for the long awaited appointment. I am also including her diet information and energy levels. I do believe we are dealing with a bi-polar issue. We have it in our family, so I am no stranger to the disorder. (BTW, dd is adopted, so I don't think its genetics.) Her mood swings, anxiety, hyper sensititvity and the fact she has her own "reality" in certian situations, is exactly what we have in our family member, but of course as an adult her mania is not anger/rage, its spending and such. I think dd needs something to stabilize her.

 

dbmamaz - Diet is definetly an issue. She's super picky. So restricting diet is almost impossible as she doesn't it much in the first place. We are trying!

 

MomatHWTK - Thanks for the great links, I am off to read each and every one!

 

Merrygardens- I have so much to learn. This is so complicated. I am sure that communication is a frustartion for her, but I am aware of it and TRY to make sure she understands. Do you think this behavoir is all APD. I tend think I am dealing with more than the processing issues.

 

Again, thank you all for your support!

 

Vickie

[merry gardens]

Merrygardens- I have so much to learn. This is so complicated. I am sure that communication is a frustartion for her, but I am aware of it and TRY to make sure she understands. Do you think this behavoir is all APD. I tend think I am dealing with more than the processing issues.

 

I'm not qualified to say. I know that problems with communication usually build further problems and those problems compound over time. It may or may not all be from APD/CAPD but communication problems certainly never help! Think of the story of Helen Keller's behavior as a child and how her behavior improved as she learned to communicate. Her handicaps affected her behavior yet behavior problems were secondary, not primary. Trying to discern cause from effect is difficult and often experts have a hard time sorting it all out.

 

"When the Brain Can't Hear" by Dr. Teri James Bellis is book on APD/CAPD that includes comments about the perception of emotions and behavior. If you're looking to learn more info about APD, I recommend it.