About our Daughter

I am mother to four wonderful daughters, ages 17, 19, 21, and 23, and wife to the greatest husband on earth. God has given us a special child to raise one who was diagnosed with early-onset bipolar disorder at the age of seven, though she showed signs of it from the age of fifteen months. She also has ADHD, Sensory Integration Disorder (sensory seeking), Dyslexia, and Non-Verbal Learning Disorder-NOS, all typical comorbidities for a bipolar child. In spite of the trials, she enjoys lacrosse, running (finished her first marathon in October of 2014!), and reading and writing her own books. I will share with you the many joys and sorrows we have faced and will face in the future with the hope that you may find better understanding about this mental illness caused by both chemical and structural abnormalities in the brain. I desire that you will be encouraged by this blog if you are also dealing with a bipolar child. Thank you for reading and sharing in our journey.

How Did You Know She Was Bipolar So Young?

I wrote a long explanation of how we came to this bipolar diagnosis in a child so young under my post of March 19th of 2009. If your child or a child you know bears similarities, please seek out a good psychiatrist and don't wait for "things to get better." Often they will simply get worse, and the longer a child is unmedicated, the more damage their brain can accrue. Early diagnoses and treatment are key to providing these children with a chance at a successful life later as a teen and an adult.
Never change, start or stop a medication without the approval of your child's physician!

Monday, March 2, 2009

A dear friend posted a response wondering how the church can help families with special needs kids.  I appreciate her interest, especially as she and her husband are starting a church.  I think the first thing is that pastors and Sunday School leaders, ministry team leaders, etc. need to not just assume that they know what bipolar or aspergers disorder, or autism or severe ADHD looks like.  I would highly encourage them to read a good book written from a medical point of view on each of these disorders.  These kids are complex and their behavior is often interpreted as being "out of control" or just "naughty," and that the parents are exaggerating their lack of control over their child's outbursts or inappropriate behavior.  I read a booklet on brain disorders written by a well-meaning theologian, but I found it somewhat lacking and even offensive because of the overall tone of the book, especially concerning bipolar disorder.  What people really need to understand is that if a person is truly bipolar, whatever they do in a severe manic state is NOT something they have control over.  The manic brain cannot be willed out of mania.  An affected person, child or adult, will regret whatever they do to the point of great shame and despair because their manic actions are often the complete opposite of what they would normally do, and they are devastated by their "altered state."  

Establishing a shadow ministry would  be great.  Many public schools will have a teachers assistant to "shadow" these challenging kids in the classroom.  Many times in the last seven years, Caroline has left our church service suddenly, to go wander the halls or find a quiet room.  A shadow for her would have been fabulous, someone other than the parents, to just follow her and make sure she was safe.  

But even better, we would have loved to have had a separate room with a closed circuit tv of the service, sound-proof, where we could have taken her, while she spread out on the floor, or at a table to draw.  This would be wonderful for a family of a child with an aspergers, or autism, or one diagnosed as PDD or ADHD who really can't sit through a service. The parents wouldn't have to miss out and the children wouldn't disturb others, which can be a big problem and source of embarrassment to parents.  Some have said that they want them to be in the service and free to make noise, but really it is the parents who are suffering, unable to get much of anything out of the service because they are too distracted.  Often churches have a nursing mom's room set up like this, and it's probably time to provide this type of service to our special needs population, not to shutter them from the congregation, but to ease the burden of the parents.  

I adamantly think Sunday School teachers should receive special training for handling these children in class, and also have a shadow to assist them if the child needs a quiet time out in the hall or whatever.  

Youth leaders should definitely be informed about these brain disorders and what these middle school and high school kids might be struggling with, more than the norm.  Caroline has never felt like she has fit into our middle school group because of all of the trauma she has been through.  She feels that she sticks out like a sore thumb. Thankfully she has some adult women reaching out to her and spending time with her when they can.  

And whenever a child is hospitalized for severe depression or mania, it is every bit as stressful as if your child was in a car accident, or had a terrible illness.  Meals would be nice, because I know that my mind freezes up during those weeks and I just can't cook, do laundry, clean.  Nothing is normal.  I call it "zombie" mode.  And you spend a lot of time commuting back and forth and talking on the phone to all kinds of doctors, psychologists, social workers. I don't think many people understand the impact on the family when a child is in a mental hospital.  Your heart is ripped out every day, especially when your child is pleading with you on the phone to come home and you know you can't bring her home yet.  These are the times when I really do scream out loud in the car for God to HEAL MY DAUGHTER!!!!  I trust Him, but I don't understand his plan.

My final thought is that I have often felt people pull away from my daughter and from our family when they don't understand (or don't want to), feel uncomfortable around our daughter, or think that she is too unpredictable that we can't be invited over to dinner, to the beach, or some outing.  I know what they are thinking, that they don't know what might happen if they are around her, but it is hurtful nonetheless.  I have definitely felt far more isolated since her diagnosis.  

Thanks for asking.  I hope that someday these suggestions will be the norm.  

1 comment:

Claudia said...

Thanks for writing. A separate room during worship is a great idea and I know that I've heard Rebecca talk about the need for shadowing.

I read your thoughts and feel a mixture of sadness over the brokenness of all of us, but especially your sweet daughter. She is all the delightful things you shared in the latest post and it is a HEAVY burden that the Lord has asked you, your family, and her to carry.

I look forward to a time when it will not be so hard for her and pray that it is sooner rather than later.

Until then, we pray for you and weep with you and scream with you.