Need support and advice

[Gratia271]

Please don't quote, as I may delete later.

 

 

 

 

 

 

 

 

 

 

 

 

 

Edited July 14, 2017 by Gratia271

[Monica_in_Switzerland]

Is the older kids sleep disturbed because the little one is loud or because they are sharing rooms?  If it's due to sharing, I'd put the two 15yos together- they would probably prefer this even though they are boy/girl.  If it's noise, maybe consider ear plugs or noise cancelling headphones.  Do the older kids have any safe space that is just for them, with a locking door?  I would consider bringing the 4yo into your bedroom to sleep if there is no other way the big kids can have their own space.  

 

Those are just some ideas form someone who has NOT BTDT.  I hope some of the adoptive moms will be able to address the issues specific to your little girl's troubles.  

 

:grouphug:  

[Harriet Vane]

:grouphug:

[OneStepAtATime]

:grouphug:  :grouphug:  :grouphug: 

 

1.  Can you hire help around the house?

2.  Agree with the other ideas, if the reason they aren't getting much sleep is sharing a room, find any way possible to NOT have them share a room.  Put boy and girl twins together if they are amenable.  If it is the noise, use ear plugs/noise canceling headsets and white noise to block out the sounds.

3.  Make sure the olders have a safe place with a lockable door where they can go for privacy and quiet.

4.  Write down each day what the specific issues are and see if there is a pattern to the difficult behaviors, a trigger of some kind that you might be able to mitigate.

5.  Also, make it very clear to DH what exactly is going on at home without making it sound like you are blaming him for not being there (I say this because sometimes I feel like I am conveying simple facts and DH takes it as me blaming him for stuff beyond his control).  Try to brain storm together things that could be done right now to ease the stress and pressure in the household.

6.  For clarification, is the reason you took on 3 new members at once because they are siblings?  And the 4 year old has a twin?  Am I reading it right that you now have two sets of twins?  Or did I get it confused?

7.  Can the olders do some classes/activities physically outside the home in the fall that they could access by bus so you wouldn't have to drive them?

8.  Is there any way your husband could guarantee you one night a week to leave the house for a few hours to get a break for you?

[kbutton]

:grouphug:  :grouphug:  :grouphug:

 

I am not in your situation, but I know people who have BTDT. One acquaintance has posted about trauma competent caregiving training on her FB page, and I asked her where she received training since so many people on here ask about adoptive kids with trauma or stressed backgrounds. This is an organization she recommended: http://back2back.org/tcc/

 

Specifically she said trauma competent caregiving and spiritual and emotional wellness for the caregiver were very helpful to her.

 

I apologize if Christian resources are not appropriate in your situation.

 

This organization is location specific, and I think it's probably secular. I think they would tell you what to look for, questions to ask about finding services near you if you gave them a call. If you are in the area, by all means, please do check them out: http://connectionsforlife.org/

[Gratia271]

I am going to try to locate help for around the house.  DD15 is very emotionally attached to DD4 and keyed into her emotions.  She is a high empath and highly intuitive, so she keenly feels the pain and emotions of those she loves. I think that is the core problem for her in coping.  They don't share  a room.  Over the years, DH and I have been through a lot so his primary concern is for my coping at this point.  He encouraged me to fly with DS15 for competition so I could get a break. But things fell apart quickly with my little girl, who just lost it.  Usually when I travel with my son to competitions, I take her with me to minimize disruptions.  It just gets so draining, and I go downhill as a result of no break.  But when I take a break, it falls apart at home.  I keep telling DD4's pediatrician that I don't have one child; I have six. 

 

We adopted three children together because they are a sibling group.  It's hard for these children to find families, and we wanted to give them a family instead of seeing them on a waiting child list, where they would likely have never been placed.  We carefully evaluated forms filled out to determine what we could contend with, and long story short Eastern European countries are known for lying and misrepresenting situations (both our intl. adoption docs told us this after the fact).  So we have been blindsided by many of the problems we're faced with. And, yes, we now have two sets of twins.  My little girl's twin brother has no significant issues.  That's what puzzles the doctors because they said alcoholism and drug abuse is rampant in Eastern European countries and problems are seen in adopted kiddos as a result.  But it is not really plausible here according to them because she has a twin brother with no issues.

[Gratia271]

:grouphug:  :grouphug:  :grouphug:

 

I am not in your situation, but I know people who have BTDT. One acquaintance has posted about trauma competent caregiving training on her FB page, and I asked her where she received training since so many people on here ask about adoptive kids with trauma or stressed backgrounds. This is an organization she recommended: http://back2back.org/tcc/

 

Specifically she said trauma competent caregiving and spiritual and emotional wellness for the caregiver were very helpful to her.

 

I apologize if Christian resources are not appropriate in your situation.

 

This organization is location specific, and I think it's probably secular. I think they would tell you what to look for, questions to ask about finding services near you if you gave them a call. If you are in the area, by all means, please do check them out: http://connectionsforlife.org/

 

thank you so much for the recommendations!  I will check them out.

 

[OneStepAtATime]

:grouphug:  :grouphug:  :grouphug:

[Arcadia]

My late paternal aunt has fraternal twins who have different issues. She highly favor her two sons over her daughter so the sons get the good food and the daughter get leftovers. They were middle income though so "leftovers" aren't as bad nutrition wise.

 

My empathy level was so high that I had to build an emotional wall to protect myself. It was a survival mechanism. During exam seasons, I was in school and/or library from 7am to 11pm to have a quiet place including catching a nap there. Would counseling work for your 15 year old daughter?

 

:grouphug: :grouphug: :grouphug:

[PeterPan]

Was the little girl molested? It would be an explanation. 

 

My dd is highly emotionally sensitive, like yours is, and you need to get them physically apart enough hours a day that your dd15 can recover and do what she needs to do. So either send the 15 yo away during the day or the 4 yo. We sent my dd away this past semester, and that was part of the reason why. She needed the emotional break. It was a great opportunity for her, but also it was time away from the challenge of ds. 

 

If you put your dd in a ps now and get her an IEP, it may work. Later, you're looking at ED classrooms, etc. For now though, at this age, the placement might not be so objectionable to you. 

 

Also, what is your adoption board saying?

 

The twins are non-identical, so you could have ASD in one dc and not in the other. A lot of the techniques are going to overlap. You might call around and see about getting evals sooner. That wait is intolerable. Around here, the hospital system has a 6 month wait but privately you can get in sooner.

Edited July 13, 2017 by OhElizabeth

[Gratia271]

I don't know whether counseling would help.  She gets her intuitive/high empath personality from me, and we are both struggling far more than others around here.  Unfortunately, most of the care devolves on us as well.  Very.bad.combo.  DH is concerned for us but has no idea how to help.  I am going to take her to the dr. to see if they can give her something to take as needed for stress and/or sleep.  I worry so much about her. 

 

Like you, I have had to build emotional walls over my lifetime with people sometimes to protect myself. 

 

I think my four year old twin son was highly favored by his foster mom in the other country, and his twin sister was poorly treated in comparison.  I think this is why she is so developmentally delayed by comparison because her little body was always in stress/fight mode so she just couldn't develop.  In fairness, she does have a very feisty temperament compared to her "calm by nature" twin brother.

[Gratia271]

Was the little girl molested? It would be an explanation. 

 

My dd is highly emotionally sensitive, like yours is, and you need to get them physically apart enough hours a day that your dd15 can recover and do what she needs to do. So either send the 15 yo away during the day or the 4 yo. We sent my dd away this past semester, and that was part of the reason why. She needed the emotional break. It was a great opportunity for her, but also it was time away from the challenge of ds. 

 

If you put your dd in a ps now and get her an IEP, it may work. Later, you're looking at ED classrooms, etc. For now though, at this age, the placement might not be so objectionable to you. 

 

Also, what is your adoption board saying?

 

The twins are non-identical, so you could have ASD in one dc and not in the other. A lot of the techniques are going to overlap. You might call around and see about getting evals sooner. That wait is intolerable. Around here, the hospital system has a 6 month wait but privately you can get in sooner.

 

I mentioned that to DD15, and the whole idea is upsetting to her.  I feel like I am holding a losing hand.  When I try to help either one of them, very difficult emotions emerge.  Since DD4 falls apart away from me, I dread sending her to people who will label her and put her in a corner.  DH and I brought her home as our daughter so she could be spared a life of stereotypes and judgment.  She is so very difficult, but underneath the ugliness I see this glimmer of beauty and strength that I want to bring out.  I just don't know how, and I understand why others simply wouldn't bother trying to.

 

Our adoption specialists have been worthless. Our ped. is trying to get us in different places.  It's just ridiculously difficult with wait lists.

 

[PeterPan]

Have you visited the school to see? My ds has an IEP, so I've been down that road a bit. I'm not saying ALL schools are going to be good, but some might have a really compassionate placement and good services for her at that age. They might. It would be worth looking into. 

 

Do you have a behaviorist or someone who specializes in adoption coming in for behavioral help? We use a behaviorist. Our behaviorist has college age, comparatively affordable, workers she finds us. She screens, they come, they do what I want. So I can say work on this school work, work on play skills, work on picking up, work on pretend play, ANYTHING. That's how we keep it workable with my ds. It gives me a break, so I don't have to be so ON all the time, and it gives him the chance to comply with someone else.

 

Maybe things would get sorted out faster if you enrolled her in the ps. You're saying she'd have behaviors, but that's the POINT, that she'd have the behaviors and the school would have to eval and get the ball rolling. Our ps actually has significant training in behavioral issues. It's not like this is stuff they never see. My ds' behaviors are very challenging. Nobody there is judging or putting kids in corners. They actually HELP the kids. There are terrific programs now for behavior, self-regulation, etc. It's probably a lot of the stuff you're going to learn about after you get those evals in February, but you could get her access to it NOW if you put her in the ps. 

 

I'm saying the stuff I do with my ds for behavior is the SAME STUFF the ps does. There's good stuff out there now and your ps might have it. And if it's awful, you pull her, sure. But my ps, for all the reasons my ds is not enrolled, IS COMPASSIONATE, does not put kids in corners, etc. etc. I have no qualms and know that if I enrolled him they would care for him and be compassionate and kind. Now his case is way complicated, but on the emotional level, which is where you're at now, they would be kind. Especially at this age. The same kids, when they hit 10, are going to be more hardened. You're not going to like the placement then. But at 4? Maybe it would be ok.

[Arcadia]

How prematured was your 4 year old twins? My parents were told I (3 months premature, older of identical twins) would catch up with age peers around 6 years old which may be true because it was hard to tell who were premature babies in the 1st grade classroom. Feisty temperament and a fight mode (not giving up) can be put to good use for therapy should she need it. I was put on strong prescription liquid multivitamins as a newborn until the pediatrician felt it was safe to lower dosage and wean off multivitamins. My FTT full term younger boy was on prescription multivitamins for months too as he was anemic and not gaining weight for months.

 

I had a Xanax shot in high school by my long term general practitioner just before finals so that I could sleep for three days. I do have a long medical history of insomnia from newborn. I could cruise for exams but I was walking around awake but in sleepwalking mode then. I do have drug resistancy which was why the general practitioner went for the shot instead of tablet. Prescription sleeping pills don't even work for me. Being gifted and an empath was a horrid combination, chocolate and Coca Cola helped for me. My general practitioners (two doctors in a partnership) have been seeing me since I was a few days old so that has helped since I have a long medical case history with their family clinic.

[Gratia271]

Oh, Elizabeth,

I will reach out to the school and see what I can find out.  The friends and one famly member we have in the PS system here are not too promising, but I will talk to them again to see what and how they may help.  Thanks so much for sharing your experience.

 

Arcadia,

My family has a long history too of highly gifted and high empaths, and the combination can be very difficult.  All three of my biological kids are like me this way, but DD18 and DS15 cope more like DH (also highly gifted).  I'm not sure how that works out, but they definitely cope better.

 

[Heathermomster]

Does the orgnization that arranged the adoption provide supports?

 

Have you explored the possibility of RAD?

 

Do your 15yo twins have SLDs? I"m confused by that.

[nature girl]

Some great advice here. I don't have specific advice or experience, but we adopted my DD (at birth), and her birth mother likely used drugs and alcohol. In researching before we brought her home, we learned that depending on the extent of the abuse, there may or may not be issues. So it may be that your daughter is suffering effects that don't affect her twin. Have you seen an RAD specialist? That is also something that affects many, but not all adopted kids, and (like FAS) often looks like ODD.

 

Big hugs to you. I hope you and your daughter can find the help you need. 

[Gratia271]

Does the orgnization that arranged the adoption provide supports?

 

Have you explored the possibility of RAD?

 

Do your 15yo twins have SLDs? I"m confused by that.

 

Our private adoption agency provides zero support.  DD4 doesn't have RAD.  She has attached to all of us and, on good days or good moments, she is delightful.  She has zero frustration threshold, doesn't sleep or eat well, and presents with a lot of sensory issues.  She is also a very willful child.  The difficult part is that it's like she cannot help herself because she loves us, hugs us, and seems to want to do the right thing but she simply cannot do it in the moment.  She has severe behavior dysregulation and cannot control her emotions in the moment.  She never directs the rage at others though; it's simply hitting things, throwing things.  She is also highly intuitive.  It's very hard to figure out.

 

My biological kids have no issues whatsoever. The problem emerging with DD15 is the stress and anxiety she feels as a result of my little girl's troubles.

[nature girl]

Many states offer respite care, for families with behaviorally challenged kids. It might be worth looking into, even if it's just to give you and your other children a break for a few hours a week.

 

Which meds have they put her on? Have you noticed any difference since starting? Some meds (stimulants or antidepressants or antipsychotics) can actually make behavioral issues worse if she doesn't have the issues those meds are meant to treat.

[PeterPan]

Have you gone to SocialThinking.com and looked at materials for her age? We Thinkers or maybe something younger...

 

And is she getting OT? This is totally within the realm of OT, and OT is something you could get into sooner. You can find an OT with training in Zones of Regulation, etc.

 

To find a behaviorist, the certification is BCBA.

 

The stuff you're describing has things you can do. You can work on self-regulation using ALERT, Zones of Reg etc. The school will know how to do this or an OT or a behaviorist. You can combine the tools. You can work through the materials, take breaks more frequently, do pre-emptive breaks where you do things that get her calm.

 

She may have some retained reflexes. Although I've read they don't test before 5, I would go ahead and test. Some should have been integrated by now, and you could be working on them. 

 

Sometimes getting that sensory calmed down, getting the body calmed down, makes everything go a bit better. If the cognitive path isn't getting you there, then go physical, with better OT, better work on sensory. 

 

I've had my kids through at least 5 OTs. Don't get me started on how unhappy they make me. If you aren't getting SOLUTIONS then move on. They're like used car salesman, vending stuff they find here and there. They don't have a clue sometimes and if the one you're going to isn't helping, you'll need to move on to someone else who might.

Edited July 13, 2017 by OhElizabeth

[PeterPan]

I kept adding to that other post, sorry.

[Gratia271]

 

Which meds have they put her on? Have you noticed any difference since starting? Some meds (stimulants or antidepressants or antipsychotics) can actually make behavioral issues worse if she doesn't have the issues those meds are meant to treat.

 

They put her on Tenex.  She no longer gets "way" out of control, so it seems to be helping her.  When she gets upset now, it often looks more like a typical 3 year old response.  When I am away, though, nothing consoles her.  So when I took my trip, I think she became fearful or something because she wouldn't comply with anything.  The meds keep her from being belligerent, but when she is in a bad place she is still not compliant. 

 

[PeterPan]

For my ds, when we started, keeping him calm meant alternating 1 demand (a thing we ask him to do) and 1 calming break. That was age 5/6/7. That's where he was at. Now we usually have 2-3 demands, then a calming break. That's age 8, turning 9. That's how he rolls. With anyone. Like bank on it.

 

Usually we've been kinda lucky and have found things, thanks to the behaviorist, that really work for him for calming breaks, then we can use them a LOT. Like for him, throwing beanie babies back and forth was calming. They're weighted and you have the noise, so it's kinda like BalavisX. Sure, knock yourself out with BalavisX. 

 

For my ds, we had to scale down the expectations and get those calming breaks to where the expectation was to stay CALM. Then we could slowly work up with demands. It is very mathematical. 

 

I do about 20-30 min of sensory on my ds in the morning before he leaves his room. If I don't, it's OVER. His body is just like WHOOSH and he's gone. So I try to get him before he leaves the room.

 

Evals were really kind of anti-climatic for us. They're not going to tell you what to do. For us what has made a difference is having a team approach, having the behaviorist plus PT plus workers plus... all come together with plans, respite, etc. We had to find what it would take for him to work and stay calm. And frankly, even when he's calm, the amount that it takes to keep him there is so fatiguing (to me, to be around) that it's not like oh yippee skippy. Dd is going away to college fulltime in the fall and it's for the best.

[Gratia271]

Oh Elizabeth,

I am going to meet with an OT early next week if dr. can work it out. I will try to do some reading and research to find out what I should be asking them.  When the meds calm her down, she seems to do better with puzzles and books with me.  We also have her jump on the trampoline as much as possible to help with her need for movement. 

[Gratia271]

It is so difficult to keep her calm.  We are always wracking our brain trying to find ways to keep her in a good place once she is there.  I told DH it is beyond draining, and I am not sure what we even get done beside managing the eating ritual, drink ritual, bathroom ritual,dressing ritual.  Somedays, it just seems insane trying to help her get in or stay in a good place.

[PeterPan]

You can also google compliance drills. I don't know about adoption and bonding issues. It sounds like maybe she's latching onto you and no one else. If there were some stability, like with workers coming in, so she knew she would have her tools and could be calm with other people too, that could help. 

 

My ds is still really bonded to me, like REALLY bonded. Like he'll be 9 in the fall and he never stays anywhere else, not even sure he could. We talked about camp, and who knows. I'm not so concerned about that, but I think for the short term, like just for 3-4 hours, it's good to know they can stay someone and have their calming tools and know how to stay calm and have expected behaviors.

 

Yes, meds plus behavior work can be a good plan. It brought better choices within reach. But now it would be good to bring in more tools. Sometimes the school will have training in things. Like ask them, upfront, what behavior programs do they use for self-regulation. They'll be able to say what their people are trained in. Ask about restraint. Not that they're going to, but again it's to show you that there are programs and to see whether the people are TRAINED, that it's not just willy nilly. 

 

And maybe you don't like the answers you'll hear! But you can write down their answers and research them and see if they're good behavioral programs that would be good with her. The SAME programs I've gotten training in, stuff from Social Thinking, is what the schools around here use. You could ahve that continuity. You could know ok if I get the training in this or use it at home, then she'd be *familiar* with it if we decided to send her for a while.

[PeterPan]

Make sure it's an OT who specializes in autism. Like don't screw around with some podunk novice. And even then they'll vary. Ask upfront what they're trained in. You'd LIKE to hear that they're SIPT-certified. You'd like to hear that they have training in programs for self-regulation like ALERT or Zones of Reg. None of this is stuff they learn in school. It's all stuff they learn later.

 

When the behaviorist came to our house, first thing she did was try to figure out what MOTIVATES ds, so she could control the flow of it and get more. She had to wrap her brain around what made him tick, what his body needs.

 

Have you tried putting her in gymnastics? It's super stellar for kids with sensory. Super super stellar. Our Y is terrific with SN. 

 

Really, you're saying things that are flags for autism. I know you're like oh but she's this or that. But you're saying a lot of things. You've got rituals, rigidity, extreme self-regulation issues, need for sameness, I don't know... My ds' autism became more obvious over time. His strengths (and the high level of intervention we were doing) masked it.

 

I'm saying step up the tools. Don't pussyfoot around. Go to people with the best tools, because if it's one step removed, they can still help you. I would step up the tools and not be bashful at all. Some of this would be really easy for a behaviorist to help you with. Like it's not even the hardest stuff they do. Then, instead of spending your time figuring out WHAT to do, they could teach you and you could spend your time DOING it.

 

That's why I go to the Social Thinking workshops btw, because I needed rocket fuel for me. It takes so long to wrap your brain around stuff. I take the courses, then I know what they're talking about and we can work together better.

[PeterPan]

On the trampoline gig, that's really energizing. You need to get a copy of Zones of Regulation PRONTO. Like go order the book, bite the bullet, pay full price, order it. It will change your lives. There's no way the trampoline is THE answer all the time. So right now you're not seeing when she's red zone, when she's blue, when she needs more input, when she needs something calming, when she's in transition and needs a totally different answer.

 

Then you can make lists of things you do for each place/zone she's at. Then you DO  those things PRE-EMPTIVELY. So you practice the tools BEFORE she is red zone or even yellow zone. It keeps her from getting to red zone or yellow zone. And it's FUN! And the fun improves compliance.

 

You can google compliance drills btw. You'll find videos showing how to do them. 

 

But yeah, you need more tools than just the trampoline, mercy. It's no wonder you're having trouble. She needs options that work for her for CALMING, etc. First thing the behaviorist did with ds, who was VERY ROUGH was bring in activities that were GENTLE! Totally counter-intuitive, ey? But it forced him to self-regulate in a small way in an activity he already liked doing. So instead of throwing a ball for toss, they were throwing cotton balls using flyswatters. Still calming, still connected, but self-regulating, down-tempoing.

[Gratia271]

You are so right.  I am going off of what developmental ped said while issuing disclaimers about not knowing for sure.  I honestly am in the dark about all of this and am largely ignorant.  From the one meeting we had with a social worker who evaluated all three for attachment (attachment specialist), she said they all had integrated quite well and were in a good place attachment wise. My little girl loves everyone here, but I seem to be the one who grounds her, at least as grounded as she can be at this point.  My absence last week was really ugly for everyone still at home. Yet, when I returned, she was more agreeable in the house for everyone, not just me.  So I think maybe it is that I am her security?  Honestly, I look for patterns and there aren't any.  I'm pretty stupid about all of this and have never dealt with anything like it before.

 

I really thought our adoption agency would try to help with support systems.  DH is p*ssed at this point about their poor support system.

[Gratia271]

On the trampoline gig, that's really energizing. You need to get a copy of Zones of Regulation PRONTO. Like go order the book, bite the bullet, pay full price, order it. It will change your lives. There's no way the trampoline is THE answer all the time. So right now you're not seeing when she's red zone, when she's blue, when she needs more input, when she needs something calming, when she's in transition and needs a totally different answer.

 

Then you can make lists of things you do for each place/zone she's at. Then you DO  those things PRE-EMPTIVELY. So you practice the tools BEFORE she is red zone or even yellow zone. It keeps her from getting to red zone or yellow zone. And it's FUN! And the fun improves compliance.

 

You can google compliance drills btw. You'll find videos showing how to do them. 

 

But yeah, you need more tools than just the trampoline, mercy. It's no wonder you're having trouble. She needs options that work for her for CALMING, etc. First thing the behaviorist did with ds, who was VERY ROUGH was bring in activities that were GENTLE! Totally counter-intuitive, ey? But it forced him to self-regulate in a small way in an activity he already liked doing. So instead of throwing a ball for toss, they were throwing cotton balls using flyswatters. Still calming, still connected, but self-regulating, down-tempoing.

 

That is interesting.  We were told to keep her on the trampoline as much as possible.  I have been thinking I need to find ways to calm her, but dr. said all the exercise would be helpful to accomplish that.

 

[PeterPan]

You can search pinterest for Zones of REgulation activities. People have charts. I got the same chart from our OT and behaviorist, so it's floating around online. You can google for ideas. 

 

For me, it's exhausting trying to figure out all this AND do it. The ps can do it. They will literally write an IEP that specifies how frequently she gets those calming breaks. Like this whole oh they'd call her bad and put her in the corner, that isn't how it is. They would write an IEP that says she gets breaks of this type at ths frequency, and they'd give her OT and and and... And they'd put up charts and do Zones of Reg or ALERT check-ins. There's all kinds of stuff they can do.

 

If your relatives don't have kids with her issues, they might not know what the ps does. You can call and talk with the SN Coor at the school, ask to tour, see what they do, what supports they have.

 

We visited an autism school that was heavy on restraint and NOTHING ELSE. For real. That was not acceptable. But most of the schools I've been in are very PROUD of the level of training they have to provide compassionate services that really TEACH the kids how to self-regulate. There's just a lot out there now, in the list 5-10 years, for them to use and get trained in. If they have the training, they're really proud of what they're doing. The stuff works. Even my ds, who, with his autism, is incredibly slow to catch on, gets it a little bit. Kids with less social thinking deficits sometimes get there faster. They all use the same materials and same approaches (ADHD, autism, ODD, etc.), but some kids get a click faster than others. If nothing else, it gets the parents, the providers, knowing how to give better support. It gives you a common language.

 

Then you can say ok dh, she's yellow zone, this is what we do when she's yellow zone. Or we're going to leave at this time BEFORE she gets to yellow zone. Or she's red zone, this is the plan when she's red zone. And you know the plan and you've practiced it. 

 

With my ds, I've been able to teach parameters. Like when you're red zone, these are your choices, but these are the LIMITS. You MAY NOT destroy things. Like end of discussion. You can have your space to cool down, you can go in your closet, but if you are destroying things I'm gonna come in and have to stop it. So there's a LOT of teaching that goes on, a lot. Not one time boom. Building a common language and more understanding.

[Terabith]

Where are you located?  I'm in no way saying send her away to this residential school, but I would CALL Chaddock School and ask one of their staff members to just give you some advice.  They specialize in kids with attachment and emotional regulation issues.  They're really phenomenal and might have some great suggestions.  I can't seem to link here, but google Chaddock School.  They're based out of Quincy, Illinois, and have some family based programs that they use with little kids. 

[PeterPan]

That is interesting.  We were told to keep her on the trampoline as much as possible.  I have been thinking I need to find ways to calm her, but dr. said all the exercise would be helpful to accomplish that.

 

 

It sounds like the doctor doesn't have to live with her. 

 

Look, I've been around the block so much, I'm just jaded and cynical. If they have a phd, I doubt 'em. If they're OT, they're not completely qualified to handle it. Like none of it's true, but I've been burnt too much.

 

You've GOT to trust your gut. You're LIVING with her. Your gut just told you she needs calming strategies, which is, HELLO, what the experts say. So either your doc isn't actually going to have this as a strong point (like it's a cursory area of knowledge for him) or something. 

 

To me, that trampoline advice sounds really pat. It's like when people say burn off the energy from ADHD, lol. Move on. Get advice from someone who *specializes* in exactly what you're dealing with. Move up to the big guns. There's  LOT MORE you coudl be doing, and your ped isn't referring you there and getting you there. They DON'T know everything. Move on, use your head, network, build a better team. The stuff you're describing is treatable, and if you were here you could have options IN YOUR HOME in one week. 

[Gratia271]

Where are you located?  I'm in no way saying send her away to this residential school, but I would CALL Chaddock School and ask one of their staff members to just give you some advice.  They specialize in kids with attachment and emotional regulation issues.  They're really phenomenal and might have some great suggestions.  I can't seem to link here, but google Chaddock School.  They're based out of Quincy, Illinois, and have some family based programs that they use with little kids. 

 

We are in Indiana currently, so that is not too far way I am guessing. I will check it out.

[PeterPan]

I am going off of what developmental ped said while issuing disclaimers about not knowing for sure. 

 

Well at least he's honest. So move on to someone who is an expert. People who see a lot of ASD also see a lot of ODD. They're kissing cousins, really, really close diagnostically. Like one person was telling me that if you just met my ds and hung around with him for 5 minutes, you'd think he was ODD. Then you really dig in and examine his social thinking (how he actually thinks) and it's clearly autism. But that takes time. So we're talking really, really close. So close that my behaviorist was saying she sees a LOT of ODD but also finds it really different. So you could find that when you get in with the right person, stepping up to the big guns, that to them the differences are really obvious, that they ahve enough experience that they can tease things apart. And the differences then are social thinking, what interventions, how they can manipulate, how they need to be worked with, etc. 

 

When I don't know things, I call around and play dumb. I google and call people and talk with anybody who will talk with me till I learn enough to connect dots and get help. 

 

I think in your case it's very obvious you need an OT who is trained in Zones of Regulation, etc. You need a behaviorist. Those are needs. And they shouldn't wait till February. And while I would not mortgage your house for the OT, I *would* mortgage to get the behaviorist. And it doesn't have to be a blind thing either. Like call, talk with different ones, and when you click and have one that is helpful you'll know. 

 

Our behaviorist has enough experience that she is just wicked insightful with ds. She can totally predict things, and she can connect dots and find explanations for stuff I can't see. Sometimes I'm just too CLOSE to figure it all out, kwim? Like you're seeing all the dots. Your gut is right. But having an extra person, someone not emotionally connected, someone with more experience, can really help.

[PeterPan]

My family is in Indiana. Where in Indiana? Doesn't IU have an autism clinic? I thought I read about some research from there. 

 

You've got enough big universities. You could travel and get evals. Are you rural? Actually, Indiana is a dive. Come to Ohio if you're not finding what you want. We rock in Ohio. :)

[PeterPan]

Find / Contact Certificants

 

This is the BCBA search link.

 

Remember, call around to everyone in a 1 1/2 hour drive, act dumb, learn all you can. And use them to network and ask who does good evals for this situation. That's how I learn things. :)

Edited July 13, 2017 by OhElizabeth

[Hilltopmom]

Ohelizabeth has given you great advice.

 

I'm just chiming in to say that I understand the feeling that adoption has completely turned things upside down & ruined your family's normal life. I've been in that place before with bio kids who felt we messed everything up.

Im sorry things are rough.

Do pursue evals, get the school district to start them while you're waiting for your private neuropsych evals. Take the services offered & don't be afraid to switch OTs if no progress.

[PeterPan]

This is just a total aside, but I've been pondering what would happen if I had another baby. There are so many things you don't know, like whether the baby would have significant disabilities, etc. And that thought that I would have CHOSEN it is sort of hard. I think I would feel the same way you do. And yet, what, you don't know till you take a chance. And life is boring if you don't take a chance. 

 

What is really happening is that things are getting hard enough and bad enough that you're finally willing to reach out for help and TAKE the help. And what really happens is that you make a whole new circle of friends and that your circle of knowledge and connections and experiences and who you can relate to widens. 

 

And it's good in the end and growth. It's just really crunchy along the way. The key is not to be in denial too long or take too long about it or be too cavalier not wanting help. The sooner you ask for help and beg for help and take help, the better. 

 

The way it is now isn't the way it has to STAY. But it sounds like she's going to need significant help. My ds can suck up 20 hours a week with workers. With all that, I can stay rested, have some time to pick up my house, etc. I've got enough worker hours now that I've even started cleaning out my sewing room. I haven't sewn significantly (like more than a seam) in several years, ugh. 

 

I wasn't joking on the mortgage thing. Our behaviorist is $100 an hour, and some are much more. See what you can get your insurance to cover, or put her on state medicaid or something to get her better access. Figure out the money, bring in the team. There's more than enough work for you to do, even if you bring in help.

[Gratia271]

Come to Ohio if you're not finding what you want. We rock in Ohio. :)

 

Funny!  DD18 will be at Ohio State this fall, and I drive my son to Columbus regularly for fencing.  It seems like I'm there all the time. Maybe I should move there. :tongue_smilie:

[kbutton]

It sounds like the doctor doesn't have to live with her. 

 

:iagree: And if your DD is less than a clear-cut case, he's really not going to know what to do. The lagging maturity thing is interesting in light of the fact that people think your DD is attached. 

 

Indiana--IU has tons of information on autism, which means they might have a good place for evaluations. I can't tell from what you've said if she's likely to have autism, but nothing you said would make me rule it out. If she happens to be gifted, ASD is going to be that much harder to tease out.

 

I would definitely call those Cincinnati resources, particularly the Connections for Life, because they probably have networked with people in IN or know resources by reputation.

 

This sounds bad, but if you are thinking autism is at all possible, I would think twice about Cincinnati Children's (if that is the closest big place for you to go). I think they identify some kinds of autism well, but the rest they miss by a mile. That sounds awful, but I am sort of past caring about offending them. Now, cardiac genetics? Fabulous! Programs for parents of kids with autism? They offer a lot of stuff. Identifying autism? Yeah, only certain kinds of kids.

 

But yes, you need to have more tools, not fewer. Tell your ped that the trampoline is fine (if it helps), but offering that as the only solution is like saying that the only vegetable your kid needs is iceberg lettuce. 

[Terabith]

I keep wondering....is there anyone anywhere who is good at diagnosing autism in highly functional, highly verbal adolescent girls? 

[Guest]

Gratia271,  :grouphug:

 

I am juggling a bunch of different things at the moment and my time is very limited, so I was only able to read your posts and a few of the others. I did not want to quote in case you decide to delete but the post I liked, is to say that I am a lot like you and your daughter. 

 

There are many studies that show the positive effects that exercise has on ADHD. This may explain the trampoline recommendation. Here's one:

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3724411

 

From the conclusions:

 

"To date a very limited number of small, open clinical trials have systematically evaluated the impact of physical exercise on behavioral and cognitive functioning in children with ADHD. Results from these preliminary studies provide some support for the hypothesis that a sustained program of physical exercise is beneficial to children with ADHD. However, far more research is necessary before widespread use of such interventions would be warranted. In addition to larger, better controlled double-blind studies examining the acute effects of such programs on ADHD severity, longer follow-up studies are necessary to determine whether, like psychostimulants and behavior modification, treatment benefits are transient and only persist as long as the exercise continues. On the other hand, it is possible that exercise promotes brain growth and development, and as such can yield enduring behavioral change in children. While unknown at this time, it is possible that exercise, when combined with cognitive remediation strategies or other evidence-based treatments, will be particularly helpful. Finally, future treatment studies should incorporate pre- and post-intervention neuroimaging and biological sampling to elucidate the mechanisms by which physical exercise might ameliorate symptoms of ADHD."

 

You mentioned sensory issues. There are some studies that have found positive effects from Sensory Integration Therapy (SIT). You would want to look for a therapist that has SIPT certification. Here's the history of SIT:

 

https://www.siglobalnetwork.org/ayres

 

and what to look for in a therapist:

 

https://www.siglobalnetwork.org/professional-page-1

 

Also, the parents' resource page:

 

https://www.siglobalnetwork.org/parents

 

You can find the links in the tabs on top but I thought I would add the direct links.

 

I wish you all the best and hope you get things sorted out, soon   :grouphug:   :grouphug:   :grouphug:

 

 

 

 

[Guest]

I keep wondering....is there anyone anywhere who is good at diagnosing autism in highly functional, highly verbal adolescent girls? 

 Terabith, I just noticed your post. My 13 yr old had an ASD (Asperger's) diagnosis at 9 1/2 and when the developmental pediatrician sent in a referral to get my son further testing my son did not get in, most likely because he is very high functioning. Late last summer we saw a pediatrician who put a question mark on autism and diagnosed him with ADD. She also sent in a referral (we need this for autism funding) and my son was seen by a neuropsych who administered the ADOS on him and we did the ADI-R questionnaire for the ages of 4-5. He just received official diagnosis of ASD (Asperger's) and ADD (mild to moderate). My point, it would be good to ensure whomever does the evaluation uses both the ADOS and ADI-R. 

 

Hope things work out for you!

Edited July 13, 2017 by Guest

[PeterPan]

I keep wondering....is there anyone anywhere who is good at diagnosing autism in highly functional, highly verbal adolescent girls? 

 

The issue is that language used to be part of the criteria with autism (dsm4, when it was separate from aspergers). Now you've tossed that, but there's still kind of this impression I think and this lag where places are really sifting apart and wanting to see language. I've even heard there's a hospital that wants the kids to be non-verbal. Like I don't know if they mean that literally, but that is what I'm hearing and why it seems to be happening.

 

Not to ask the obvious, but have they had a tool keyed to DSM5 like the newest version of the ADI-R? We were diagnosed under DSM5 with the newest version of the ADI-R before it was even fully out. Like our diagnosing psych was friends with the author, blah blah. We had no problem getting diagnosed with the ADI-R. The GARS, I'm not so crazy about. The newer version isn't bad, but I'm just saying I like the ADI-R. 

 

And, you know, just go through the criteria. This stuff is all subjective anyway. Sometimes kids float along, right on that line, and eventually slide over in their teens. 

 

The other way to go, which I actually think is much more interesting and compelling and useful, is to get an eval for the dc's Social Communication Profile. Socialthinking - Clinical Training  This is the link to find someone trained in it. https://www.socialthinking.com/Articles?name=Social%20Thinking%20Social%20Communication%20Profile  This is the list of the profiles. The person trained should be able to do a dynamic assessment, using training directly from the people at Social Thinking, to do an eval that generates all kinds of info on their social thinking, nonverbal and verbal skills, etc. We got TONS of info with my ds' eval. Had to drive 3+ hours each way for it, but we learned a ton. 

[kbutton]

I keep wondering....is there anyone anywhere who is good at diagnosing autism in highly functional, highly verbal adolescent girls? 

 

I think that part of the issue is that "language" is so broad. For instance, my son's verbal areas are solidly in the gifted category, but they are a LOT lower than his other scores (except things like processing speed). But his earlier scores, at the time he was diagnosed, show the verbal as the highest areas, and he tested (at that point) as having 8th grade plus reading comprehension and things like that.

 

His language issues are like Swiss cheese, and it's in putting together all the pieces, plus a few little oddball problems with language that look like nothing on paper.

 

Here are two tests that helped us a LOT. 

TOPS-2 http://www.linguisystems.com/products/product/display?itemid=10440

TNL-2 https://www.superduperinc.com/products/view.aspx?stid=785&s=tnl-2-test-of-narrative-language%C3%A2%E2%82%AC%E2%80%9Csecond-edition#.WWfvuIjysdU

 

These are both adolescent versions of the test or updates that extend the age range into adolescence, so be careful about that if you opt for language testing.

[Guest]

deleted for privacy

Edited August 11, 2017 by Guest

[Lecka]

I have fraternal twins also. One has autism. I think keep in mind how many differences there can be during pregnancy even with twins.

 

Mine both had a good placenta but not all do.

 

One of mine had a better birth position while the other was a breech baby. My baby who wasn't a breech baby was better physically at birth, my breech baby did not have the head control that she had as a tiny baby.

 

And then there are still different temperaments and being treated differently.

 

Separately, I can share I had a good experience with special needs pre-school for my son. He was not treated poorly. You have to check on it, but many who work with special needs children are extremely loving and caring people. Many also have a person with special needs in their life.

 

That is one way for your daughter to have a break. I think she needs to have breaks of some kind.

 

Also your kids who don't seem to be as bothered, may be but may show it in some different ways. Or may have needs as well for breaks, but just fortunately have an easier time than your daughter.

 

I do think it is probably stressful for all your kids, though, and I think having breaks is good.

 

Also any help you can get I hope you can pursue. I don't know what is best.

 

Also, I think anything can be a break. Maybe a class or an activity or just going out. I think if your daughter thinks she needs to stay to help, try to get other help and make sure she feels like she can go out.

 

I hope this doesn't last very long, but advice I got was -- I have to be ready for the longhaul, I can't afford to burn out. This has guided some choices for me. Things have to work for the child, but you must be able to function long term for the child's sake too.

 

You sound really stressed out and I hope you can find respite of some kind. I think feeling better about your older daughter would be a weight off your mind, too. So if your older daughter sees things are under control -- it will benefit her, too.

[maize]

I would also look into special needs preschool through the school district. I sent one of mine the year he was three, and while we did end up pulling him out part way through the year there were positive aspects to it. Sometimes parents need to enlist every community resource available and this sounds like one of those times.

 

Has the medication helped at all?

 

Make sure evaluations include autism spectrum; with a child adopted our of difficult circumstances professionals may be looking for other causes for behavioral difficulties first but ASD is a common cause of sensory difficulties and meltdowns and that is one diagnosis that could help you access additional practical help and therapies.

Edited July 14, 2017 by maize

[maize]

I responded before reading all the replies, I see others have also mentioned autism.