Mom's Survival Guide: Tips I use to save my sanity!

Mom’s (and Dad's too!) Survival Guide: Tips I use to save my sanity!

·         First of all, remember that no matter how hard it gets, tomorrow is a new day.  It is also important to help our children remember this. No matter how many struggles we had today, we cannot change that, but tomorrow is a new opportunity, a fresh start.

·         Don’t hold grudges. Many of us are end up with PTSD because we kind of sit here waiting for the other foot to drop.  Try not to focus on the past- try to live in the now…

·         Go in at night and look at your child sleeping, admire his (or her) eyelashes, look at how long is fingers have grown, kiss his little nose, and remember that no matter how big the struggle was that day, he is still your little boy.  Sometimes amidst the storm, we forget just how small and delicate they are.

·         Keep your relationship strong (with your significant other).  A child with a disability can be an incredible strain on a family-

·         Laugh often

·         When you don’t know if you should laugh or cry, try to laugh… try to see the humor in the situation.

·         Forgive yourself when you completely and utterly fail, it happens. Beating yourself up is not going to change that.

·         When you are telling your child “It’s just a shirt, it’s not a big deal!” ask yourself if you’re following that advice. If you are arguing with them about what shirt you want them to wear, you really are making a shirt a big deal.

·         That leads to one of my favorites- Pick your battles!

·         Take “me” time, even if it’s just to go to the grocery store.

·         Take the kids to the park- let them run and play, take a book, savor the peace, look at them as children, and appreciate the chance to have some calm time.

·         Don’t expect too much- not of yourself, not of your child, not of the day. If you don’t expect too much, then you won’t get disappointed.

·         Try to make things seem like they are your child’s idea.  “It’d be really cool if we went to the store and got some fruit to make a smoothie!” (Then while there say, “Oh boy, can I pick up some other things while we’re here!”)

·         Things aren’t always black and white… sometimes we don’t quite understand why they are upset and vice versa. Ask clarifying questions and encourage your child to do the same. If we don’t understand one another, we can’t communicate. Without communication, we are not getting anywhere!

·         Don’t let it get to you (at least try not to)- when you yell back, it makes things worse, the situation gets exponentially worse and so does your emotional state! Try to ignore what you can… If it isn’t hurting someone (physically) or destroying property, try to ignore it.

·         Have a safety plan- just like in case there’s a fire. If brother or sister has a rage, teach the siblings what to do- perhaps go in the bathroom and lock the door, or go to the neighbor’s house- something that is planned on ahead of time.  It’s one of those things that is hard to talk about but necessary.

·         Try to have fun, if your little one struggles with things not being good enough- keep things short and sweet!

·         Avoiding doing too much and tiring them out- don’t’ go to the mall, the park, the movies, dinner, and ice cream all in one day.  A sleep kid can change the whole flow of things.

·         Have a back up plan!  When you have a long to do list, prioritize.  Note ahead of time which things need to be done immediately and which things can be put off until later or the next day. That way the most important things are done first, and if you need to head home, it’s not such a big deal. I find when I feel pressure to get too much done, and I’m stressed, I can cause my son to have a meltdown, because he doesn’t listen to my words as much as he looks at my physical cues.

·         Have compassion, when the crappola hits the fan, try to think of what it would be like to be them. Maybe they made bad decisions all day and are trying to do good. Imagine what it would be like to have such a struggle just to do the right thing! 

·         Praise, the big things, the little things, the things that took any effort… Clearing a plate after dinner, doing something without being asked, acts of kindness, not arguing about something that is usually a struggle… praise, praise, praise (especially If you want to see it happen again!)

·         If all else fails, and in desperate situations, resort to bribery! J

Pet Peeves

Pet Peeves

Is there anything about your child that drives you absolutely batty?  I can’t be the only one with pet peeves. Despite all of our other struggles, just some of the things kids do are like daily exercises to increase our tolerance level. 

One of the things that drives me absolutely insane is goofy faces.  Not in joking or playing times, I’m all down with playing around and laughing.  However, something about saying “Okay well take your shower, and when you get out…” and as I turn to face him I see this goofy, unbelievably dorky face, and it just irritates the heck out of me!  I mean eyes crossed, tongue out, nose scrunched… yeah it is lovely!

I mean there are other things… going to go pee and finding one of my sweet boys has used my bathroom (Yes, the bathroom in the master bath is mine, too many men use the front bathroom, so I have my own!).  Yet, somehow they forget this is mommy’s bathroom and use it, pee on the seat, and then leave it. Or perhaps it’s some scheme they have planned out to sabotage me? I wonder sometimes! J

Others, half full glasses of juice or milk, being left on the counter or table. Then “Wasn’t me” and “Not mine” (what I call the ghosts that apparently do the things my kids would not do, of course!) strike again.  Where did that glass mysteriously appear from?  It must be the ghosts!

Trash, on the floor… inches away from the trash can.  Really?  Is it that hard for your young, able body to bend over and try again?  Apparently it is!  But I surely just saw you bouncing on the couch, so maybe that strenuous activity wore you out so much that you truly are as tired as you are claiming to be when I ask you to pick it up!

Flooding the bathroom floor…  A requirement to taking a bath, does not include creating a tidal wave, really!  It doesn’t help rinse the soap off, it doesn’t help clean the tub, but maybe it does encourage mom to clean the floor more frequently.

“MOOOOMMMMMMMMM!!!’ being screamed from the other room.  When I say “WHAT?” no reply… then “MOMMMMMMM!” screamed again. Dag nabit if I can hear you calling me, you can’t very well say you can’t hear me!  Though daddy is equally guilty of this!

Private time, I mean bathroom time. There must be some ingrained thing in the mind of little children that says

“mom’s in the bathroom, must get her attention, now!  If door is shut, open it! If said door is locked, insert persistent knocking (keep knocking!), until acknowledged. If no one answers, KNOCK LOUDER!"

Or there is always the splendid “I will wage war with my brother the second you get on the phone…” Thank goodness for texting, because the second I start talking to someone else, all sanity flies out the window! 

I love my kids so much, I really do!  So, what are some of your pet peeves?

Signs & Symptoms of Early Onset Bipolar Disorder

I wanted to include some expert perspective on signs and symptoms of Early Onset Bipolar Disorder.  Mani Pavuluri is a Psychiatrist; she also is on the advisory counsel of a website that hosts the support group I co-moderate.  She has gone to great lengths to research and provide information to parents of children with bipolar disorder. If you or someone you know has a child with bipolar disorder, I urge you to check out her book.  Also, find a support group.  There are few people out there who understand, yet thanks to the internet I found a wonderful support group of parents all over, going through something similar.

I assembled this page with an outline.  The first bullet explains symptoms, as outline by Mani Pavuluri, MD, PhD (2008), the indented bullet explains what experiences we have had with that particular symptom.  These are some of the early signs or symptoms of bipolar disorder:

·         Elated mood- acting really silly, overly excited, having a sense of being invincible, laughing more than is appropriate, or doing a behavior compulsively (being so overwhelmed with the feeling they must keep doing it!) 

o   My experience here- Tre would be walking on the side walk and I would ask him to hold my hand, he would say “It’s okay Mom, if a car gets too close I’ll push it out of the way” or “If someone tries to take me, I’ll kill them” (at 4!).  He would do things repetitively, like flip a light switch on and off and somehow me mentioning he needed to stop or that it was enough compelled him to keep doing it. This is where it gets hard, it feels like there is disrespect, like your child is supposed to be listening, but in reality it’s not something easy for them to control.  Sometimes he would laugh as I would tell him what he had done had hurt me. I chalk this partly up to not understanding his emotions, and not being sure what the appropriate emotional response was (but sometimes it was really disturbing, to be honest). 

·         Irritable mood- aggressive, raging, slamming doors, not easily able to switch from on activity to another. Kids explain after the swing that they tried to stop themselves, yet they could not. Parents describe it like being in a war zone.

o   For us- War zone is an appropriate title.  I know when Tre becomes very irritable things slam, he yells, and he throws things.  It to me is like a seizure and his doctor said it very much is. He will knock things off counters, knock furniture over, throw things; it can be very stressful to deal with.  Yet there is not much you can do about it. The words you speak fall on deaf ears.  His mind has no capacity to process what I say when he is in that mode. So it’s like riding out the storm.  The more stable he is, the shorter the storm lasts.  Sometimes we go weeks or months without a major episode, in harder times he will cycle better elated and irritable, nonstop.  It is almost like he is at mercy to his body.  He regrets what he does, even says he hates himself for it, yet he cannot stop himself.  I have watched him try with all of his might.

·         Inflated self-esteem or grandiosity- The child will claim to be the best at whatever he/she is doing.  This can include the child talking or acting like he/she knows everything.  This tends to be a mask for the true lack of self-esteem and/or self control the child actually has.

o   Personally- I have seen Tre do this, however he tends to be very good at the things he puts his mind to.  However, while most of us have experienced a child that knows everything, my son has taken it to a whole new level.  I swear sometimes he would argue that the sky was not blue!

·         Decreased need for sleep- maybe they are up super early or refuse to go to bed at night. Maybe you put them to bed, to check on them at midnight and find them wide awake, playing in their room… Yet they can wake up in the morning bright and chipper.

o   In our house- He did not need the extra sleep it seemed. However, for our sanity we tried establishing a bedtime routine.  I literally would have to sit and read to him until he would fall asleep at night, to get him to fall asleep in his bed. Actually, not much has changed.  He is nine now and has no issue staying up until midnight. Yet, if I relax on the couch at eight, he curls up next to me and usually falls asleep.

·         Pressure to keep talking and flights of ideas- Talking, rambling, none stop

o   For us- This is for me a rough one, because I was a chatter box of a child.  So, I see sometimes it becomes excessive but I manage it okay. There are times he just keeps pushing ‘But I have one more thing to say!’

·         Constant goal-directed activity- fiddling, making a mess at home, if you say that it needs cleaned, the child gets defensive. Perhaps they say it’s not their mess…  Other behavior includes switching from one activity to the next, driven to keep doing more and more

o   Our perspective- We get a lot of meltdowns from standing between what he thinks he needs to do, and what he is doing.  Maybe it can be something as dangerous as riding his bike down the middle of the street, no matter how hard we try explaining why he cannot, he can’t let it go.  We call it mission mode here.  He determines something needs to be done and he goes on a mission to complete it.  This is one of the biggest causes of meltdowns in our house. 

·         Excessive pleasurable activities (hypersexual), poor judgment, and risk taking- Maybe the child starts dressing inappropriately, finding inappropriate pictures, or doing things more physical in nature.  Poor judgment means these children take extreme physical risks, being sometimes dangerously impulsive.  Acts like attempting to jump out of a moving car, destroying furniture, trying to jump off the roof, etc.

o   Our experience- Fortunately we have not dealt with hyper sexuality. Risk taking is something that is not always going on, it sometimes happens in the peak of a mood swing. It’s like their thought process isn’t clear. I see Tre go into a kind of fight or flight mode, and if he chooses flight, it can be dangerous to him.  The situation he is trying to escape may be something as simple as “When we get home, you need to brush your teeth”. Somehow his mind takes that as him being under attack. It ties into the previous symptom; goal orientated behavior.

·         Features of depression- children feel differently than adults; crabby, cry for no reason, excessively whiney, look unhappy, cycling from irritable to crying, hurting themselves.  Children often are extremely sensitive to rejection, because of the bad responses they have had from others over time.

o   For us- We have seen depression and while it is quieter and more controlled than the other erratic behavior can be, it is also the most terrifying for me.  I watch him very closely when he is in a depressed mode. 

·         Threats of suicide- often even the youngest child with bipolar disorder show suicidal behaviors.  Suicide behavior is reported in as many as 25%  in children with bipolar disorder.  Sometimes this behavior is mistaken for high risk behavior; jumping in front of a car, or out a window.

o   For me- This is a terrifying statistic and sadly one we have experienced.  He at one point tried putting his head through the window, and told me it was because he wanted to die.  He didn’t want to live in this world anymore.  I felt like I was in a nightmare I couldn’t wake up from, because he was hurting so badly and there was nothing I could do to help him.

·         Psychosis- hallucination, delusions, present in 17-60% of patients.

o   Fortunately this is something we have not had to deal with.

Reference

Pavuluri, M., M.D., Ph.D., (2008) what works for bipolar kids help and hope for parents. New York: The Guilford Press.

How I knew

So after some questions about what alerted me to Tre's disorder, I wrote this up... it was a little long for a comment.

How I knew…

This is the hard part to write. How to explain how I knew something was wrong… but here we go.  When Tre was just a baby he had incredible anxiety, especially about me not being close.  He would be sound asleep and I would leave the room, not three steps down the hall and he would wake up screaming.  Like an alarm went off in his head, alerting him that I was no longer close enough.

As he got older, crawling and walking, I couldn’t do dishes without him standing there crying the whole time. It was hard to do anything but I would just wait for a nap. Honestly, I didn’t realize how “odd” this was, until I had my second child.  When I saw the capacity Dominic had for entertaining himself, or just being alone, I was really shocked!

By two he was defiant but expectantly.  I really never suspected anything other than strong willed, up until he was about three and a half.  He had major temper tantrums.  Just out of the blue out of the tiniest things. It was like he had missed having fits at two and was making up for lost time.  We would be in the store and he would just have a total meltdown, laying on the floor in the middle of Walmart, and of course NO ONE would mind their own business!  Thank you for the kind advice people of walmart!

We had just moved, and had our second son, so once again I suspected it was the change, jealousy, or perhaps I was letting him down on some level. So, I tried harder, I spent more time outside with him, hoping he could run out some of that little boy energy.

When he started biting me, bruising me, and hurting me, and I had to physically restrain him, I knew I  needed help.  One day (at 4) he cried “Mommy hold me down, the monster is coming” he felt he had a monster inside himself.  No one had ever called him a monster, it was his own interpretation of what was going on. I sat, holding him, crying.  Then I set up an appointment with a child psychologist. 

After weeks of play therapy, the psychologist said he thought he was a sociopath, uh that was horrifying!  So I didn’t take him back…  I tried everything in my power to “fix things” myself.  I tell you it was the most exhausting and painful time of my life. I would sit against my bedroom door, holding Dominic, who was 6 months, while Tre would kick my door, beating it with his fists, screaming “LET ME IN!”  and if I did he would come after me.  If I put him in his room, on time out, he would open the window and scream “HELP ME! She’s hurting me!” (seriously, I wasn’t!).

Finally at almost 7, we had had a lot of ups and downs. One day he snapped and tried to really hurt me, and it was beyond what I could justify. I went to counseling myself, hoping and praying I could somehow find a problem in me, something I could get help for, and that the problem was not inside of him… my counselor told me to get an evaluation ASAP!  So, that’s what I did. The Child Psychiatrist talked to me about everything that had gone on, and my husband.  They considered family history and asked about things I had never even thought of.  After his evaluation he told me he truly thought my son was Bipolar. He said Early Onset Bipolar Disorder is not taken seriously but those who deal with it, know just how serious it can be. 

I went home that night and read and read, and read some more. I don’t think I slept as much as I sat in bed wondering “How? Why? What now?”  As I read I learned about the increased rate of suicide in bipolar teens, I read about the importance of stability, I learned about others going through the same experience…  and that gave me some hope. 

So we started medication and it was a rollercoaster in itself.  At first good things but our insurance would not cover the meds that were most effective.  Then we had a bad reaction to a med and he started hurting himself…  But finally we had what is called stability. Medication never makes it all better, but it makes it manageable.  It makes life easier for him.

Fast forward to December 2010, he had an ADHD evaluation, he tested very high for that.  The Doctor who did the evaluation thought perhaps his ADHD was so severe, that he wasn’t bipolar.  Well we weaned him off the bipolar meds and it was realized how important his meds were.  Seeing a seven year old, suicidal is the hardest thing I’ve experienced as a parent.

So, we knew medication was going to be important.  This year in school, the teacher and counselor approached me and said they felt Tre was Autistic.  So after hearing this a few times, I talked to his doctor.  She sent him for an Autism Evaluation. He scored in the 86^th percentile; the doctor said he was confident saying he has Asperger’s.  Sadly, there is no definitive test. No blood work can tell a parent for sure, that’s hard to accept.

I felt guilt that I had missed it all these years. We discovered many kids with Bipolar can have such severe symptoms that it overlaps the symptoms of other problems. Basically, dealing with rages and meltdowns, made it hard to identify the other symptoms he was experiencing. 

I'm BAAACCCCKKKKK

So not a day goes by that I don’t sit and think of something new I can try. Is there anything I’ve missed? What haven’t I tried?  I know the answer must be RIGHT under my nose!  Today I was thinking to myself, it is much like trying to find the right key for a lock.  Imagine having this lock (what will work to help your child), but there is an infinite number of keys, and even pieces of keys that combine to make one key.  The deal is, to help your child; you have to find the right key!  The problem is, sometimes the lock changes too.  So something that might work one day, or one week, or even one year, can become obsolete.  This means sometimes revisiting things that did not work before, and being willing to try new things.  The key, ultimately, I think has to do with never giving up. Not giving up hope, not giving up on your child, and most importantly not giving up on yourself. 

What do I mean by things that can help? For my son, I consider the following; medications, natural supplements, homeopathic remedies, diet, and environment. Sometimes my tone alone can be enough to set things on a really wrong path.  I realized the other day, that in order to be the one “in control” I have to stay in control.  Meaning, if I want my son to see me as a “leader” then I can’t fall to tears when he calls me stupid or tells me he hates me. I have to stay in control of my emotions. I can’t react. I mean I kind of understood this, I’m not one to hit my kid for saying something inappropriate- but sometimes I snap back at him.  Fighting fire with fire isn’t really ideal.  I have to help balance him out, meanwhile leading by example.  Sometimes that is a lot of pressure!!!  God knows sometimes I just want to scream at the top of my lungs!  And I had to realize that doesn’t make me a bad person, it makes me human.

I know I haven’t posted in a while. Life happened.  Tre was diagnosed with Asperger’s back in November.  After some struggles with school and some MAJOR anxiety (though really justified but too long to share now), I decided to pull him out of public school.  Now from 8:30 am to however long it takes us, I am teaching him.  He requires 100% of my attention to complete a task. As grueling as this can be, he is thriving!  When I see his growth and his confidence increasing, it makes every second worth it.  I have had to learn to manage my time better of course, because Dominic is still going to public Kindergarten.  We have Tre’s school, Dominic’s homework, martial arts for Tre, and now t ball for Dominic

Recently my uncle moved closer to us. He is Bipolar as well, and he is in kind of a rough place. I try to help him as much as I can. He recently started a new program and I am hoping he finds a better place. It’s a big adjustment for me.  I am now feeding six people at dinner each night, planning anything I do around not only my children but extra family members. I’d be lying if I said it was easy, and I definitely have earned my bi*$h badge on a few occasions. 

Health wise for me, I was finally diagnosed with Sjogren’s (what Venus Williams was recently diagnosed with) and antiphospholipid disorder (which causes blood clots).  My neurological symptoms came from things called TIAs which were warning signs for a stroke, the damage is not lasting or permanent but is much the same as a stroke.  So, I take high dose aspirin every day and so far, so good!  I also found out I have some major issues going on with my cervical spine but there’s not much they can do for me now. The answer was pain medicine, but I have found that I manage myself and my family much better without the pain medication.

Dominic is starting tball and super excited. He is on the Angel’s team, and cannot wait to get out on the field.  He has been showing some signs of PTSD lately, which is common for siblings of children with issues like Tre. So I think t ball will be a great opportunity for him to have some special attention, and some support, even from his big brother!  I bought the family all Angel’s shirts for the games and Tre cannot wait to sport his!

So I will try harder to be more involved.  I’m trying some new diet changes with Tre.  My approach right now is high protein and trying to cut out food dyes. So far we know for certain that Red Dye is a big culprit.  You wouldn’t believe all of the things you can find red dye in, look at your toothpaste (for example).  I did some research on Feingold’s diet, after hearing positive things from my support group.  It was an amazing read.  I also have been working on must do and may do cards with Tre.  The poor kid has so little control over things, even his own responses.  So when he can sort out the order he wants to do the “must dos” in, and pick the things he puts on his may do list, he at least feels like he has some power.

I know ideally he would do things because I am mom, and I said so… but that is not going to happen.  The child is the master of pointing out the fallacies in my logic and when he can’t do that he resorts to just flat out not doing things.  He keeps me thinking, that’s for sure!

My hope is that somewhere, somehow, some of my experience may be beneficial to someone out there.  Where we are at, parents of children with special needs, can be a very lonely place. I have let people convince me that I was the problem, that my child was fine, and that I was the problem for far too long.  I am proud of both of my children and I love them both very much.  I find that too many people keep their children’s issues quiet, like it is something to be ashamed of.  If more people would just come out and share their experiences, maybe more bonds could be created.  Maybe less people would have to feel alone.