Concerns for 8-yo daughter - does this sound familiar?

[mangobits]

We have an 8-yo daughter I will call Bunny. She has long had issues that could point to sensory processing disorder, anxiety, and possibly even ODD. But beyond those, there are issues that have not gone away that increasingly have us concerned. I am doing research because we lack resources to hire specialists and live in rural area with few if any.

I was wondering whether parents or siblings of adults with BPD can recall what their loved one was like at age eight?

With Bunny, the behaviors that have most concerned me are the following which have been consistent since about five years old (some even earlier):

- Moodiness to the point a neighbor called CPS on us thinking Bunny was abused because she was so "moody" (her words). Sometimes getting her to do anything at all is a challenge, like going outside, and can trigger major fits.

- Seemingly purposefully making her fits worse by goading others on, pushing way beyond the limits, throwing things, hitting and scratching, etc. Bunny is the only person I have seen literally spitting mad. I detect a genuine pleasure on her part at making things worse and trying to really hurt us or her sibling (it is sad to say this but undeniable)

- Collapsing or just "giving up" in social situations like hiding under desks at birthday parties, sitting on the floor and refusing to budge when everyone else is having fun. This we see as her being easily overwhelmed by senses and emotions.

- Super sensitive to criticism, imagining nobody likes her; also very strong self-criticism (this in a household where we strive very hard to be positive). In these moments she'll say people hate her whom she formerly said liked her.

- Extreme separation anxiety going to school, including episodes of running away from us and school staff into a busy parking lot

- Intense fits over anything she doesn't want that can result in 15+ minutes of her running away, scratching my face, throwing things, forcing us to literally hold her down.

- Alarming statements of self-harm or insult during fits like "I'm going to go run out in front of a car", "I wish I could die," "You're a fat face", "You don't love me", "I wish I had a different parent" (these are things never otherwise heard said in our family). There is a distinct sense she is trying to cause as much harm as she can with her words.

As parents we expect children to outgrow things, but Bunny seems to be getting worse in some ways, and we are feeling less capable of dealing with her. We love her for her many fantastic qualities but they seem to get sunk by the waves of these issues. I began asking myself recently What if this doesn't go away? How will we handle this when she is a teenager? What if she cannot control herself physically and ends up hurting us or herself when she is older and stronger?

Does any of this ring a bill with anyone? We feel we are approaching a point where Bunny and us need training and help, but we want to get the best help possible and not end up putting her on medication unless that is unavoidable.

Our objective is to better understand the struggles our child faces and to learn the skills to improve our relationship and provide a supportive environment and also improve on our own emotional responses, attitudes and effectiveness as a family leaders

[lbjnltx]

Hello mangobits,

We are glad that you decided to join us and ask for input.

I'm sorry that you d8 is so troubled, she must be very scared inside to have so much acting out. 

My daughter was experiencing some separation anxiety at the age of 2 and her therapist suggested we take her to a child study center to have her evaluated and attend play therapy.  My husband refused and 10 years later all hell broke loose and she was diagnosed with ODD, MDD, emerging BPD, anxiety, and had some psychotic features.  At the time this all occurred we too lived in a rural area and had to travel 125 miles round trip to therapy.

An evaluation may be a 2 day ordeal and worth the trip and overnight stay to make this happen.  It may be a small price to pay for some insight and direction for therapy.  Do you have access to any child therapists within a reasonable distance that your family could attend on a regular basis?

Are there other children in the home?

lbj

[mangobits]

Hi lbjnltx, thanks for replying. I had not heard of a child study center but it sounds like a smart initial approach. I wonder whether it would be covered by insurance? We recently started audio recording these episodes because we wanted a therapist to hear them.

We do live a couple of hours from a bigger town that will have more resources. There is one child therapist within 30 minutes of us we were considering.

Bunny has a sister who is 12. She was diagnosed with ADHD and anxiety after a few rough years but now is doing well on medication. Unlike Bunny, she never had mood fluctuations or verbal and physical violence. Her fits were always based around anxiety or frustration.

Also I wanted to mention that Bunny seems to be growing increasingly anti-social, not wanting friends at school to come over to play, etc. Recently I took her to a dance social at her elementary school and she literally just sat on the gym floor while people stood or danced around her. Her friend tried for 10 minutes to get Bunny to dance or have fun, but Bunny would not engage with her or me. I tried all the parenting tricks but nothing worked.

[lbjnltx]

Insurance would probably cover a visit to a Child Study Center if it is recommended by a Child Psychiatrist or Child Psychologist. Being careful with the financial aspect of this journey is important too. Deductibles being met and 20% coinsurance and many other aspects of insurance coverage to consider.

I tell my d19 "We have to make our health care dollars count as much as possible.  We need to spend them wisely"

lbjnltx

[Bright Day Mom]

Many of your daughter's actions are ringing familiar bells with me. Our d16 was dx w/mdd,anxiety social, general and BPD; I wish I had been ahead of the game when she were 8, but I chalked it up to other factors. 

I agree w/LBJ take action, definitely do your best to stretch those insurance dollars in trying to stay in network.

I think the earlier the intervention the better the outcome.  Good luck to your family

[Thunderstruck]

Hi mangobits 

I don't usually post on this board. I am a stepmom of an SD11 whose biomom is uBPD.

SD11 has displayed many of the traits that you stated above! I chalked a lot of it up to fleas from uBPDmom, you know "learned behaviors" from a pwBPD. I do have to say that her behavior was the worst when she was 8 years old. She has gotten much better in the past few years.

However... .

I took SD11 to her elementary school dance a few months ago and she had a meltdown right there. She said no one likes her, she has no friends. She wanted to leave. Now she doesn't want to attend school functions because she doesn't think she will have friends there.

SD11 will also hide if people come over and she's nervous.

She has, in the past, walked away from friends and sulked to get their sympathy/attention.

Homework seems to be a big trigger with SD11. She will have full scale meltdowns if we even start to talk about doing math homework with her. She screams, cries, throws things, drops to the ground. It's like a toddler tantrum.

SD11's teachers all say she has gets easily frustrated and loses her temper/talks back. They also say she has trouble concentrating and paying attention.

I looked up SPD a few weeks ago because SD11 is very sensitive to loud sounds. I don't know if it fits the bill for her.

I don't know if my insight helps at all since we have no diagnosis either (we have to go fight uBPDbm to get SD11 into therapy). But I just wanted to chime in and say I know what you're going through!

[Thunderstruck]

Funny, just after I typed the response above... .DH sent me a message (I'm at work) saying SD11 is having a meltdown at home. He sent a picture where she's crying, eyes rolled into the back of her head and her head it tilted to the back, and she has her hand over her ears. He said she's saying "You're so mean to me, you hate me, you love the baby more than you love me".

SD11 had a friend over today. She must have let her emotions get too high and now they're crashing (and burning).

(I did say she's better now than she was when she was 8, but we still have difficulty at times)

[qcarolr]

Hi Mabngobits

My gd will be 11 this month. She has always lived with dh and I. We are truly her parents in every way. She shares some of what you describe, though the tantrums fit in with my DD30 childhood better. It is apparent to me that severe anxiety underlies much of what troubles both my girls.

GD is benefiting from her therapy, started when she was 4. She really began participating verbally in her therapy after she turned 8. I believe this was a developmental step. Things were really tough there and have improved in so many ways this past year. She is increasing her times with her T this summer as she is extremely anxious about starting middle school next year. Anxiety is the primary dx that we are managing now.  ADHD is now a secondary dx.

My DD30 still struggles greatly. I so wish I had been  informed about BPD when she was younger. She was dx BPD whe she was 23. I also was stymied by lack of support from dh when DD was young. We did not have extra money and the insurance at that time did not consider many of today's legitamate dx's as real. The things I have learned with gd in our family sessions has also helped me with my relationship with DD.

DD had the tantrums like your D. I can see now, with what I have learned about gd and with what DD has been able to tell me know that she could not then, Anxiety has the biggest impact on her development. The attachment/trauma informed therapy models bear this out as well. There is this huge well of fear always awake in my DD, and she does not flee - she fights! And so many people label her acting our behavior as deliberate, belligerent, anti-social, manipulative, etc.  When I am able to validate her emotions of fear she is able to regulate herself and we can be in the same space together safely. If I tell her to just calm down, she is more likely to throw something across the room.

Validation skills have been the key beginning to improvement in my relationship with my family, most esp. DD and gd. Dd has a lot of bad habits to unlearn plus so many around her telling her what a bad person she is -- total invalidation.

Seek out an evaluation for your girl. It will be worth the effort. Let us know how things are going.

qcr Carol

[flourdust]

I concur with the advice above.

My daughter is 10. Her mother is diagnosed with BPD, depression, anxiety, and has a history of somatoform disorders. Our daughter appears to have inherited some of those traits, as well as growing up with an unstable mom for a role model.

Starting around age 2 or 3, we noticed that she could be aggressive and stubborn. She was the kid in day care who bit the other kids and was often removed for time-outs.

In preschool, her behaviors could be defiant and aggressive, and we sought therapy for her. This became what I called the Carousel of Diagnosis. It's wickedly hard to get a clear diagnosis for a young child with unpredictable but out of the norm behavior problems. She spent years trying on different diagnoses and seeing specialists ranging from psychiatrists, to talk therapists, to occupational therapists. She also tried various medications, to no noticeable effect.

In school, she had an IEP for a generic emotional-behavioral disorder. The IEP was a godsend, because it provided some structure for the school to work to try to manage her behavior, rather than just imposing punishments. Her behavior continued to worsen throughout elementary school, and by fourth grade, she was so disruptive that she was moved to a special ed classroom and frequently given "restrictive procedures."

At the end of fourth grade, we had to institutionalize her in an inpatient program in a mental hospital. She was there for a week, then transitioned to a day program. The team of professionals really helped a lot. She wound up with a therapist who clearly understood these kind of disorders, and a psychiatrist who experimented with different medication regimens and made adjustments quickly. Low doses of sertraline and risperidone, along with the therapy and close coordination with the special ed and social work team at the school did wonders. Her behavior at home and school improved about a million percent. In fifth grade, she slowly transitioned back to the mainstream classroom and handled herself appropriately, even as social stresses increased due to the usual adolescent middle school dynamics.

We're now slowly titrating her off of the medications, monitoring after each adjustment. She still doesn't have a definitive diagnosis -- you can pick whatever label you like -- but the improvements are unmistakable.

[livednlearned]

Hello and welcome mangobits 

I'm so sorry for what brings you here. I know how hard it is to have a child who struggles to regulate her emotions. She is lucky that you are researching and reading and reaching out for support and ideas on how to help her.

My son (now 14) presented more with "acting in" behaviors at age 9, though he was similarly flooded with emotions or would shut down entirely, and has always been highly sensitive, including having sensory processing issues. He had suicidal ideation at age 8 and since then he has had an alphabet soup of diagnoses: ODD, ADHD/ADD combined type, OCD, anxiety/depression, Tourrette's, sensory integration dysfunction, misophonia (hatred of sound). He is also highly intelligent, which strangely enough complicates things.

Some of the books on highly sensitive children have good tips for how to support a child who struggles with sensory overload, and I remember one book in particular (can't remember the name, I'll try to find it) had tips on supporting siblings so they could better understand the behavior and why different parenting techniques might apply. It took me a while to accept this, and I finally see that my child has special needs, even if he is performing above grade level and has no physical telltale sign of disability.

It took me many years to realize I was not "reading" my son's very real sensory issues properly, and was responding in the exact opposite way he needed. It's possible to create a chronic environment of invalidation which could possibly lead to BPD traits, I would imagine. Some of the highly sensitive child/people books talk about BPD specifically. My son did not like gentle touch and needed heavy blankets, for example. Even now he sleeps under heavy blankets and needs a special shower head to give him sensory stimulation in the morning, enough to help him regulate during the first 4 hours of school.

One of the hardest things for me was to change my parenting. There have been many times I get my son to an event, only to have him meltdown and want to leave. Sometimes we sit there and talk about how he feels. I have had to learn to acknowledge the effort it takes him to get through what I consider normal situations. It is very hard for me to be late, and he has taught me that sometimes we need to sit down and work through his feelings, and if that makes us late, it makes us late. We talk a lot about what is going to happen, how we are going to handle things, and to an extent the consequences for not following through. My T has helped me the most with boundaries when a child is difficult or oppositional, and over time I've learned when to nudge, when to enforce. When I learned to speak his language, he seemed to feel less alone. His therapist has given him his own language and he's learning to advocate for what he needs, and we're slowly seeing some progress. His needs for validation are deep and wide.

If you haven't read it already, I recommend Blaise Aguirre's book about BPD in Adolescence as an excellent view ahead. Whether your D8 is ever diagnosed BPD or not, she is struggling with some big challenges and all of the skills that help with BPD children will help with her.

I cannot say enough about how changing my parenting approach helped my son. He was labeled at-risk by a child psychologist when my son was 9, and while we're not out of the woods yet, S14 is showing signs of impressive maturity that surpasses what others twice his age demonstrate.



Keep posting. People here understand and genuinely care.

LnL

[mangobits]

Everyone, thank you for the replies. I was out all week and was so grateful to return to helpful tips and encouragement.

This past week saw some major "day wrecking" fits with Bunny, particularly because we had house guests who had to endure 20 minutes of screaming and rage. We took her to a new GP hoping blood tests might reveal something. The first thing the nurse did was ask if Bunny was autistic because she was mute for almost the entire appointment and was half-playfully hitting me in the waiting room. The doctor had no immediate insights except to suggest certain behaviors in Bunny were indicative of ADHD. We were hoping blood tests might show a culprit like low blood sugar or anemia, but they were normal. I'm sure many of you know that sinking feeling when you enter with hope into the presence of an expert only to witness them shrug their shoulders, although we should get a referral to a local child psychologist.

One of Bunny's major fits this week was triggered at the dinner table. She said some teasing things to her older sister DD12, who in turn said some minor teasing things to Bunny, who snapped. Until then everything was fine, but she slammed her glass on the table and made a shrieking noise which startled her grandmother. I knew what was coming and picked her up to drag her from the table and downstairs. Talking failed and Bunny fought for 20+ minutes as I tried to keep her downstairs and out of the presence of our visitors. By that I mean literally holding her down while she screamed and kicked and ran and escaped a couple of times, once outside into the street. As usual these fits are a mix of her seeming totally out of control with moments where she is clearly goading it on despite serious discipline measures. By the end of it I was so exhausted that I was "done" for the day and basically escaped downstairs until bed time. I suppose this is proof that I will need to alter my behavior to control my own reactions.

With Bunny it seems like we increasingly have to walk on eggshells to avoid triggering fits. Today, for example, she did not want to leave the house on a trip everyone else was going on. It took about 15 minutes to convince her and dress her without triggering a fit. It required basically carrying her to the car, but after that she was fine and had fun the entire time. It is hard not to feel taken or like a bad parent, especially when others witness this, because there is no clear reason for it. I suppose this is where the diagnoses can help, because it might eventually give us something to point to.

I know the Carousel of Diagnosis is going to be a long ride, especially with our limited resources. I need to step back and take a different approach to these episodes as some of you recommended. That is something I can do now. I don't know why it is so hard to do that.

I remember having severe anxiety around 7th grade. It sank me completely. I didn't care about my grades or anything. I just wanted to hide at home. I can remember my mother screaming and pulling at me to go to school, which hurt me all the more to witness. I can remember that overwhelming feeling that sank me a little deeper every day. It just seemed to exist of its own accord. I have to realize Bunny may be feeling something just that overwhelming when I am impatiently demanding she put her socks and shoes on so we can get going.

Our objective is to better understand the struggles our child faces and to learn the skills to improve our relationship and provide a supportive environment and also improve on our own emotional responses, attitudes and effectiveness as a family leaders

[qcarolr]

Mangobits

There is a book that teaches validation which helped me change how I respond to many difficult situations. It is available on Amazon.com as a used book very inexpensive. "I Don't Have to Make Everything All Better", Gary and Joy Lundberg. I will look for the book review link.

qcr Carol

[livednlearned]

I'm so sorry, mangobits. It can feel very scary to watch our kids peel away from us with emotional regulation challenges.

You are probably right that there will be a carousel of diagnoses ahead. If it makes a difference, the skills you learn to deal with BPD will help with anxiety and other disorders, or anything else bunny may be dx'd with.

Keep reading. I know it sounds like trite advice but your own learning will help you negotiate a mental health industry that can tragically fail the most vulnerable people, inadvertently as much as anything else.

People may not want to diagnose bunny BPD because she's so young, or they might not want to stigmatize her or upset you. You came here knowing something is very wrong and that intuition is going to be the center of the storm ahead -- keep listening to your inner voice. BPD is treatable and DBT skills are available to you if you need them, and if BPD is treatable, then so are other disorders that show up in range.

When you read about DBT it makes so much sense, the interplay between her emotional struggles and the environment. Give her language and skills and hope and she will have cause to rise to the occasion. Our children have special needs.

We have to be the ones advocating for them when other people only see bad behavior.

[qcarolr]

The best DBT book I have found for parents of younger kids with BPD tendencies is "Parenting a Child Who Has Intense Emotions: DBT skills to help your child regulate emotional outbursts & aggressive behaviors" by Pat Harvey and Jeanine Penzo. I learned the skills with a focus on applying them with my grandaughter over the past 6 years. I came out a better person as well.

qcr Carol

[mangobits]

I've ordered a couple of recommended books here and will post an update with any findings. I really appreciate the support and encouragement.

[wendydarling]

Hi Mangobits

Glad you have bought a couple of recommended books.    I read and re-read books at bedtime, one may think it too challenging just before bedtime, quite the opposite for me, I find it very comforting, it's the time of day I can give my full, thoughtful, peaceful and reflective attention and I fall asleep soundly with book still in hand 

Took me a number of re-reads to take it all in, give yourself time.

WDx