The Holidays Are Always Hard

We love Christmas in our house, but we welcome it with a little trepidation. I remember the Christmas, before she was diagnosed, when she was obsessed with lighting candles and would run all around the downstairs, blowing out flames and relighting them, much to our horror, since she was all of seven. Over the last six years, we have learned to lower our expectations of what our family can do during the holidays, or at least we are working on it.

My husband and the three youngest kids went out to the country yesterday to pick out a fresh Frasier. Now that this prized tree is up, I am reminding myself about how disastrous it was last year when we tried to do a "family tree trimming night." with all of the ornaments down at once and not having pre-planned the whole thing. Between Caroline's total lack of patience with noise and chaos, and Mae's insistence on perfection, I seem to recall that we had to bring everything to a screeching halt. We decided to try again the next night, with only one child at a time hanging up their own ornaments. This was a much better strategy than the confusion over whose ornaments were where and who got to put up what when. Again, something simple for other families is far from easy when you have a child with Aspergers, or bipolar disorder, or severe ADHD (or all three for that matter.) Accommodations must be made or you will hate this holiday so much you may refuse to decorate at all, as I was close to doing last year!

Oh, and we do not make Caroline sit through one of our other daughter's Nutcracker ballets, like we did in years past. She hates watching ballet, so why make her endure, or make us endure, her discomfort? Without the normal amount of self-control that other thirteen year olds have, she would get claustrophobic and agitated with each passing minute of the ballet. Some things are just not worth the pain. So we will do our best to enjoy this wonderful season celebrating God's gift to the world of His precious Son, while keeping it as low key as possible. Now, ice skating as a family is something everyone seems to tolerate just fine, as well as seeing the display of lights at the botanical gardens. You just have to find what works and what doesn't. Decorating one gingerbread house at the same time doesn't work. Letting each child do one side by themselves, bingo. Taking all four kids shopping for presents for each other together: bad idea. Taking one at a time, magic. Be kind to yourself. Drop the idea of a perfect Normal Rockwell Christmas, and embrace one that is rich in meaning, if not in activities.

Seasonal Blog Change

We never get snow where we live--it will get very cold, but it seems the line between rain and snow is just to our north. I long to see snowflakes all winter. So I picked a cooler template wishing for the white stuff to fall. Maybe it will work.

Thanksgiving

I am so grateful that Thanksgiving went very smoothly this year. Caroline did great, even with the noise and chaos of four little cousins added to the mix. So proud of her! Such a contrast from last year when she was inpatient for a month and we had to drive an hour and a half north to bring Thanksgiving dinner to her, all of us sitting around a table in a very drab room in the hospital. I tried to dress up the table as best I could, but it was a hard day. Leaving her was painful, knowing she probably had another few weeks to go. Last fall was simply awful.

I am thankful that a year has passed since then, and for many other things: I am thankful that she was able to go to the fantastic residential program at Meridell that changed the direction of her life; for the wonderful private school that accepted her afterwards knowing she might be difficult; for our church family that has been so supportive and caring; for my own family and their acceptance of our bp child, and their constant encouragement; for my many, many friends who love us unconditionally; for my fellow bloggers and followers who remind me I am not alone; and most of all for our faithful God, who has held us close every step of the way, carrying us when we could not lift our heads, "...being confident of this, that He who began a good work in you will carry it on to completion..." Philippians 1:6

A Nice Sight to Come Home To...

The sight of my two youngest girls folding laundry in the living room and sorting the piles. I really needed that !!! Thank you!!

Caroline doesn't have meningitis, always a concern when your kid has a bad headache and stiff neck. She pulled a muscle in her shoulder doing hip hop moves. Glad we have a four day weekend and no basketball practice!

Sick Again

I feel like this kid gets sick much more often than my other kids. Off to the doctor again today, this time for bad headache and fatigue. I think that in one week I have been to a doctor's office about eight times. Four kids would mean a lot of appointments by nature, but Caroline kind of triples that number. Once I heard someone say they wish they would invent a van with a washer and dryer in the rear because she spends so much time in the car. I was kind of offended by that, thinking the last thing a woman need is to be tied to her laundry everywhere she goes. Now, I get it. My laundry piles up because I AM ALWAYS GONE!! My neighbor across the street is kind of in awe of how many times I am in and out of my driveway in one day. Between basketball practice, three different school pick up and drop-offs, ballet and Nutcracker practice, dentist and doctor appointments, social activities, church activities, vet visits, and grocery shopping, I probably leave my house a dozen times a day. I need a laundress, or a washer and dryer in my van.

Great Psychiatrist Appointment

Caroline's psychiatrist agreed that her late afternoon/evening hypomania could be caused by a dip in her Lithium level since we are not using the extended release form. So we got a prescription for Lithobid, the ER form of lithium, and we shall see if it works. Also she needs to get a bunch of blood drawn for lithium and Trileptal levels as well as thyroid and liver panels. Lithium can damage your thyroid, and the anti-psychotics can harm the liver. Poor kids. If their disorder doesn't kill them, their medications can. Not to be flippant and callous, it is just the sad reality of what we live with every day.

Something's Amiss

We are taking Caroline back to the psychiatrist tomorrow because she just hasn't been doing as well as she had been doing, really since mid-October. It seems that something is wearing off in the late afternoon, making the time from about 4 to bedtime more difficult. She had been on extended release Lithium (Lithobid) at Meridell, but when we got back her doc gave her the regular kind, which may be the problem. We don't know, but she gets hypomanic and then quite irritable. Hopefully we will be able to get this fixed quickly. Her grades are not as good now either. And her room is getting really messy again, which happens when she is "off." We parents of bp kids have to become experts at reading all the "signs" portending mania or depression, don't we?

Parades Join the List of Over Stimulation

We went to our city's wonderful Grand Illumination Parade tonight, where all of the downtown buildings light up at the same time to welcome the holiday season, thinking it would be a fun, family event. We forgot one thing: Caroline hates crowds, and too much noise. Parades are pretty much defined by crowds and noise, so this was not a nice family event, but something I would rather forget. She became so agitated and mean, even punching one of her sisters! We went to watch our youngest march with her school's float, but next time we will let Caroline watch it at home on the TV. We forget that things that are normal situations for most kids, are simply not for her or any bipolar child. Lesson learned. Again.

We Think It's Working!!!

The Intuniv, that is! In the last few days Mae has shown a definite change in her moods. She is focused, and much more in control of her emotions. In particular, we have noted that she is better able to handle "no's" and irritating situations without meltdowns. We are so grateful! This is her third week on the new ADHD med and the literature did say it would take three to four weeks to see results. Thank you God! Even her sisters have noticed the change. How wonderful it would be if her sisters would actually like her again. One more step in the direction of a "normal" family life (we all know the normal is relative.) I am so glad we didn't give up finding the right med for her, and thankful for the pharmaceutical companies that work hard to make better drugs.

Soap Box Postscript

I just wanted to add to my rant last night that my husband and I are well aware that we are highly imperfect parents. We have made mistakes, and will make mistakes, with our kids. The last post may have sounded a bit arrogant, as if we are expert authorities in the matter of medicating vs. not medicating. Actually, we have so much to learn, and our kids know it too! We most certainly have had bad parenting moments when you think your kids will never forgive or forget, but we know that in the grand scheme of things, as we continue to admit our weaknesses and ask forgiveness, our children will learn that life isn't about perfection, or hiding our issues. Life is o only lived at its fullest when we live authentically. Hopefully they will see that we need grace as much as they do, and that our deep love for them keeps us seeking the best we can provide for them as they are growing up, not so much materially, but rather emotionally, educationally, and spiritually. I think they call it character building.

Medications Aren't the Panacea

Some of you may be thinking that we are awfully quick to medicate our kids, as if we have a knee-jerk reaction when any one of them is acting out: they are misbehaving, so they must need a medication to keep them in line. Let me reassure you that we do not believe that the first answer to any behavioral problem is medication. Consistent discipline, loving rebuke, and lots of boundaries are the foundation for solid parenting. To throw a drug at a child but not address their behavioral and heart issues adds up to poor parenting. But if a child meets the criteria for a mood disorder, or an attention-deficit disorder, then to not provide that child with the right medication so their brain can do what it is supposed to be doing is but can't because it is lacking in certain brain chemicals, is in my mind, a type of child abuse. Unmedicated kids with ADHD, bipolar disorder, Asperger's often come to be viewed as the trouble makers at school and at home, their relationships marred by behavior which is neurological and chemical in origin. A child who is constantly receiving rebuke at home and in the classroom because they can't focus, can't sit still, can't act with appropriate manners in different situations, will soon be a discouraged, defeated child who decides early on he or she can't succeed in anything, and will have few friends, and fewer opportunities to excel in life.

I do highly tout the use of natural brain-boosters like the Omega 3s and 6s found in fish and flax oils, and exploring vitamin deficiencies, protein deficiencies, and the like, because we are organic beings who are greatly affected by what goes into our bodies. And good psychological counseling is a MUST for any family dealing with a severely challenging child because the strain of caring for them can be overwhelming, and the child also needs to be able to work on his attitudes and behaviors in a safe environment. Great parenting gurus are out there with wonderful books offering sound advice for correcting negative attitudes and behaviors--I couldn't list them all. We have certainly read many of them ourselves, and taken many parenting classes, some good, some not so good.

But as much as some would like to think that strong-willed kids just needs more discipline from likely over-permissive parents, I would ask you to withhold judgement if you do not walk in our shoes. And if you have a child with whom you are struggling beyond the norm, please do not refuse to consider medication because so many kids are "over-diagnosed" and "over-medicated." Think about the fact that many children have diabetes and you would not withhold medications from a child whose pancreas wasn't functioning --that would be abuse outright. You are not doing your child any favors by withholding what may a huge part of the answer to his problems. Read up on neurology and how the different areas of the brain interact and control many of our emotions and behaviors, and how abnormalities in certain areas affect outward behavior. We can control many of our decisions and actions, but there are reactions and states of mind that are outside of our control if our brains aren't functioning properly. Sometimes you have to undergo a lot trial and error with medications (we have done years of this), but if you love your child, you won't stop trying until you have found what works so he or she can fulfill their God-given potential.

We live in a fallen world, and this means that we are frail humans living in a messed up world, with often messed up bodies and minds. The good news is that we have the gift of wonderful medicines and doctors that humans for centuries past have not had the privilege of using, so be thankful, and do what is best for your child!

I'll get off my soap box now.

It's That Obvious, Huh?

Yesterday, I met with my therapist to discuss our youngest's behavioral issues. If you recall, she is the one who is stirring up the pot these days. She has the type of ADHD that includes explosivity, defiance, meltdowns, and the like. Now she is on Intuniv, the newest non-stimulant ADHD med, and showing some signs of improvement, which, we were told, would happen after about three to four weeks. We have taken her off of the Methlyn, after seeing that it just made her angrier, though focused.

Anyway, the therapist said that last week when Mae and I were in her office, that she noticed how differently I was breathing when I was in the room without Mae, and then when she joined us. She said that when it was just me, I was calm, relaxed, and breathing normally. But as soon as Mae was asked to come into the room, she saw me tense up and my breathing changed to basically holding my breath, and then exhaling in big sighs. Anxious breathing, she called it. My husband has certainly noticed it, and I thought I breathed like that all of the time because the kids were always noticing it too, but I guess that there are times when I don't breathe anxiously, apparently when I am not with my kids. Hmm....(breathing, breathing)

Moms with Combat Stress

An article appeared recently in the news stating that moms of autistic kids have the same amount of stress as soldiers in combat. No kidding. I think that moms of bipolar kids must have at least that amount of stress and possibly more. I mean we are living with a frequently violent child when they are unstable, which is often much of the time, save for the rare times when all medicines are just right, the school situation is just right, and the rest of the family is doing ok. I wake up every morning since Caroline has come back from the RTC in August with a clenched jaw, muscles in my back and neck in tight knots, and a sense of tension and anxiety following horrible nightmares every night. I think it is PTSD from so many years living in chaos and fear. I need to renew our YMCA membership so I get back into yoga and pilates, which bring healing for us living this sort of life. Combat would definitely describe our daily lives, fighting to keep our children, and ourselves, sane.

Interesting New ADHD Med

Our psychiatrist just prescribed a very new ADHD drug called Intuniv for our youngest daughter. This drug is derived from Tenex, often used in bipolar kids as a calming drug (originally a blood pressure med). Intuniv is designed to address the type of ADHD our daughter has, which is the lack of focusing ability accompanied by extreme irritability, explosiveness, and meltdowns. Some have called this the "ring of fire" ADHD because of the circular pattern that lights up on brain scans of people diagnosed with this subtype. The doc said that the medicine would take about three to four weeks to really work, as we increase the dose by 1 mg each week, up to 4mg. We sure hope this med works for her, because at present the Methlyn helps her to focus, but doesn't address the irritability and explosions we deal with all of the time with her. She acts so much like Caroline that we have wondered many times if she is bipolar, but she doesn't meet the long checklist, and her explosiveness is never violent. We shall see. Peace is a valuable commodity here, and we rarely have it. Behaviorally therapy is the second part of the answer but a good med is so helpful!

November

When I posted about the annual period of mania, I am referring not just to the fall, but to November. Last November was when everything went to hell in a hand basket. Caroline had the worst fall of her life last year (and ours too), ending up with spending over a month in the hospital. I have seen other parents struggle with November as well with their bipolar child.

November means Thanksgiving, which is a whole other issue. Where do we have Thanksgiving? Do we travel three hours up to see my husband's family and risk having it all ruined by an unpredictable child? Or do we stay here and host Thanksgiving, still not knowing how Caroline might be on that day? I think we are staying here, although the kids would much rather travel. We'll see...

Mania Making Annual Appearance

Unfortunately, Caroline has been acting manic this past week. Not completely out of control, not so seriously that we need to take her to the hospital, but enough that we are watching her very carefully. We haven't seen this since before she went to Meridell back in May, so we have been feeling a lot more stress. She has a psychiatrist appointment on Wednesday, so that is good, but I was wondering yesterday if I needed to push it up to today. I guess we will see how she does today at school. I thought about keeping her home from school, but my husband said she seemed okay this morning. I am concerned about what medicine we could go up on because she is at the maximum dosages on all of her meds, I believe. I don't want to see anything changed because she has been doing so great. How I hate this stupid disorder!! Just when you think you have a reprieve, something changes.