The story of us

[ccoslop]

Hello everyone. When I was just 19 years old I gave birth to my daughter. The first two years were relatively normal (based on my expectations of what parenting was going to be like). My daughter was colicky and had terrible sleep patterns, but that is to be expected with babies. When age three rolled around, things began getting extremely difficult with her moods. She was hyperactive, more than normal three year olds, impulsive, and her moods would fluctuate frequently and she would have these mind altering melt downs. There was no doubt in my mind that something was wrong with her. When she was seen by the pediatrician I expressed my concerns and they basically dismissed my thoughts because I was a "young mom" (which was very similar to what my family was doing). I refused to stop considering it was impacting my life and hers the most. I went to pediatric specialists and explained the long history of mood disorders and psychiatric illnesses in my family including Bipolar, schizophrenia, agoraphobia, and borderline personality disorder. I spent months researching and documenting everything that went along with this and I was 1000% sure that she was suffering with pediatric bipolar (and I was right, but we'll get to that in a minute). Despite family history and detailed records, the pediatric specialists couldn't get past her hyperactivity and impulsivity and, you guessed it, they continually gave her a diagnosis of ADHD.

Ugh, so finally we saw a specialist from Dupont and as I tried to hold back tears of frustration, he asked if she had been diagnosed with juvenile bipolar yet. I was shocked to finally have someone see what I was seeing all along. He examined her and without even reading the family history he was able to see signs of it in her (she was 4 at this point). Because he was a developmental doctor, he referred us to a behavioral adolescent facility that had pediatric psychiatrists that could help find medication and a treatment plan that would work for her. It took a few months of seeing a social worker before she referred us to the psychiatrist, but in December of her Kindergarten year we finally got to meet with him and he prescribed her Abilify (for the mood instabilities) and an ADHD medication so that she could focus in school and reach her maximum potential. As she grew, the doses and medications that she needed changed. After 3 years of seeing the psychiatrist, he thought it would be beneficial for her to see a neuro-developmental specialist because there was still a delay cognitively that was not able to be explained.  

We were able to get an appointment for a VERY EXPENSIVE evaluation with a neuro specialist and despite being treated for bipolar, she did not believe this is what she had. (Side note: this was a neuro specialist that my parents used and there is no doubt that they were constantly talking to this doctor about how I was looking for more of a diagnosis than what was there. At this point, I didn't care because I wanted what was best for her, and I thought that any medical professional would be able to see past the opinions of uneducated people.) The evaluation was conducted when my daughter was still on her medication for bipolar so it isn't difficult to conclude that the results were skewed because of the medications effect. This all began in October of 2013, and in January of this year after claiming time after time that all of her symptoms were ADHD, she finally began to see the big picture! She not only had juvenile bipolar, but she also had borderline personality disorder (yes they are on the same continuum).   finally.

We have had out ups and downs with her, but it is becoming especially difficult to deal with and I am at the end of rope here. I love being a parent, what I find to be the most devastating part is that the parent I pictured myself being, the kind I always dreamed about, is impossible and unrealistic when you have a child with this condition. I want to do these fun things with her, but over stimulation makes situations unbearable with her. She is on medication to help her sleep because she would be a complete insomniac without medication, she is also on anxiety medication, bipolar meds and ADHD meds. We have tried every "diet" for these kids and nothing works. I only turned to medication as a last resort and it has helped her improve in ways but it is still beyond difficult with her. She is becoming (and has always been, but it is progressively getting worse) the most demanding 7 year (8 in may) year old that I have ever seen. I have 3 sisters and 2 brothers and took a large part in raising 3 of them and my god it is a completely different ball game with my daughter. I understand that everyone is unique and special in their own ways, but the school we have her in cannot handle her properly, my husband and I are searching for alternatives, but she does not qualify for special services and there is no "in the middle" type of school for these kids. We are holding her back this year (2nd grade) because she suffers both academically and socially and has such severe anxiety that school calls frequently (many times more than once per day, every week!) for me to come get her. Of course I comply because I know what its like to have anxiety, but when she gets home she is chronically bored and gets into everything like a toddler aged child. Holy smokes! Raising kids is hard .

Not that I wish this on anyone else, but please tell me that there is someone else that can relate to this? Any helpful tips aside from constantly being their 24/7 entertainment committee? Thanks for reading my lengthy story, and I hope that whatever your situation is, that it has improved with this type of support system!

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

[jellibeans]

Dear ccoslop

I want to welcome you to the parent board and tell you how sorry I am for your struggles with your dd7. I am glad you stuck to your guns and kept searching for help I am sure your dd would be is a worse situation if you had not helped her in this way.

I have a few questions so I can better understand what is going on... . Is your daughter on a 504 or IEP? or even special education? I think it would be helpful to get the process going so the school can better support you. It is your districts responsibility to educate your child and you really need to be an advocate for her. Have they suggested she repeat the 2nd grade? Is she that far behind?

I wanted to ask if she is a part of any activity? Swim team or some sport that will give her the outlet for all her energy? When my dd16 was little she did have a hard time at school and was in the nurses office repeately. She really developed a bad habit of not be able to tolerate school. She is even home today because of a fall she had in the parking lot... . Although I know she was hurt in her fall I also think she could have went to school but she is highly emotional and just could not cope today with this bump in the road so to speak... . I think it would be helpful to you to sit down with school administers and address this problem. I really don't think they are helping your daughter by sending her home repeatly. There has to be ways for the school to deal with rather than putting the burden solely on you. Have they ever trying letting her leave the class room to run an errand or some other kind of job? This might give her the needed breaks she needs.

Can I ask if she has ever been put on any meds for her anxiety? My dd16 has a great deal of anxiety and it has not gotten better in time... . it is not always something they out grow. Is your dd seeing a therapist?

I want to tell you Finally I hope you are getting help... . I hope you are finding time to take care of yourself. It can be very exhausting having a child with BPD and probably extra so because she is so young. I can remember reading every book about the spirited child etc... . little did I know then what I was up against so I think you are ahead of the game. I want to encourage you to read some of the articles here too to the right. There is a lot of help and support here... . I am glad you found us

[femom]

First, you have done an amazing job getting all this accomplished for your daughter.  I am a special education teacher and many of my students have parents who become so frustrated with the system that they give up.  Does your daughter have an IEP?  She would absolutely qualify for special education services given her diagnosis and it is your school district's responsibility to provide a free, appropriate education for your child.  If they don't currently have an appropriate program for her, then they need to create one or they need to pay for a private school that can meet her needs.  This is federal law and don't allow the school district to bully you into taking "no" for an answer as I did many years ago.  Once you request your child to be tested, you begin the process and the district is required to have a meeting within a specified number of days.

Your feeling of not having the parenting experience that you had envisioned is very real and valid but you have done so much to help your daughter already I feel certain that there are ways that you can continue to improve your relationship.  You are on the right track and when you are frustrated, remind yourself of everything that you have accomplished thus far.  You are an extraordinary mom!

[pessim-optimist]

 

I want to join jellibeans and femom in a warm welcome to the Parenting board!

Your situation is not an easy one, and I am sorry that being a mom has not turned out the way you envisioned. 

At the same time, I want to say: congratulations! You are so young and you have already traveled so far in trying to help your daughter!

You already know the bad news about your daughter's condition. The good news is that appropriate therapy may be able to reverse a lot, and may help her develop in a healthy way.

These kids' brains function differently, and the intense emotions and resulting experiences often prevent them from developing the neural connections in their brain that allow better control of the emotions, and developing a strong connection with the thinking part of our brain - which in turn helps us to keep our emotions in proportion to the situation, and over-all helps us function better.

Again - the good news is: even in adults there is a good chance of developing the missing/weak connections in the brain. In children who's brains are still developing in the first place, this is a wonderful opportunity.

Welcome again, we are here to support you on your journey to help your daughter succeed in overcoming her condition. 

[qcarolr]

ccoslop

You could be telling my story in many ways.  It is so far beyond what we can imagine when that baby is first in our arms. I have a great amount of respect for the perseverance and love you have to go after the best for your girl.  There are a lot of resources that may help you understand ways you can help her regulate her emotions. Like Pessio said - her brain is still developing. There is so much new neuroscience based understanding in the past few years. A good book to start with is "Parenting a Child with Intense Emotions". click this link to see a review of this book.

https://bpdfamily.com/message_board/index.php?topic=200554.0

My DD is now 27, and sadly has been so resistant to treatment her whole life. She struggles through the many cycles in her life. I so wish that the tools and skills I have learned from bpdfamily had been around when my DD was young. I do get a 'second chance' in a way. We are raising my gd8, who also has some issues though different from DD's. Gd does not have a learning disability like her mom. She is being very successfully treated for her ADHD and anxiety plus the side effects of the ADHD meds (insomnia, not eating, aggression). We have to work on the mood stuff -- trying strategies based on some books I will list at the end of the reply.

The development part for my DD, labeled a right-brained based non-verbal learning disability, really complicated so much of the evaluation for the dx's of ADHD (age4), bipolar (age6), anxiety/panic disorder, ODD as a teen, and finally BPD at age 23. The stimulants for ADHD pushed her mood into the manic side which often reveals itself as aggression in children. The stimulants did not seem to help her focus at all, and we stopped them when she was in 4th grade. Medications for the anxiety and depression have helped, and still help when she does not mix them with street drugs. I sure wish I had the funds to work with the brain clinic in our town - some here have had success with neurofeedback therapy.

Your D's dx of ADHD and bipolar qualify, without further testing (though request the testing available) as a 'physically disabling condition' for her to be staffed for an IEP in school. There may be other areas that qualify her as well, but I know these dx's are enough to request the evaluation. You get to take whoever you desire and whatever documentation you want to the school evaluations as the parent. Be direct and respectful and do not give up with the school. Go to the special ed. department at the administrative level for the school district if you need to.

Two books that helped me a lot are "Help for Billy... . " and ":)aring to Love" by Heather Forbes. She is the founder of Beyond Consequences Institute. (beyondconsequences.com)  The first book's focus is for educators in the classroom, and the other is focused on parenting our struggling kids. She comes from a stress-based model to regulate the underlying stress/dysregulation/emotion and then the behavior/consequence based strategies can work. If our kids are in a fear based 'survival mode', their thinking brains are turned off and tuned out. Many of the behavior based strategies used in both school and home only increase this stress. Her techniques are specific and apply to emotionally struggling kids regardless of the medical/psychological dx's.They work with my gd -- when I am able to stay calm in using them. (see taking care of yourself part below!)

The other book that really really helped me to understand the neuroscience underlying my kids development, both DD and gd, are written by Daniel Hughes along with a co-author. "Brain-Based Parenting" gives lots of information - the first half is very much about the science. The second half applies his PACE model. He comes from a background of Attachment-Based Family therapy. This is the foundation of the therapy that my gd and I have been doing the past couple years. Gd has really gotten involved since her ADHD meds. are working. The T has been a life saver for me before that in managing life with both gd and DD.

Here is a link to that book review:  https://bpdfamily.com/message_board/index.php?topic=195469.0

I also have needed to build my own network of support and 'self-help'. The first step in all this is to find ways to take supreme care of ourselves. The stronger we are, the more we can help our kids. What are ways you take care of your own emotional needs? I am not very good with this part sometimes when I get really overwhelmed and discouraged. I have found so much support here, in my women's faith based group, in therapy for myself and family therapy with gd, and reading reading reading. I am still searching for a local parent support group - maybe I will have to start one!

Please let us know how you are doing and ways we can help. We understand and we care.

qcr