Today Starts #ACT4MentalHealth Take Action

This is my beautiful daughter, Kelsie, she will be 16 soon. And she has Mental Illness.

Does this look like the face of #mentalillness ???

NO!!

      Mental illness has no Face, it doesn’t affect the poor, illiterate, Hispanic, underprivileged ….it does NOT discriminate!!  Mental illness has No boundaries. No limitations. This is my beautiful baby girl, and yes she struggles and lives w Mental illness every day. The brilliant, beautiful, wealthy, poor, homeless, educated…. Have Mental illness.

And, it’s OK !

     Mental illness is not a choice, is not contagious, does not make u less than. Let Congress know that More help needs to be provided for ppl and those families living w Mental Illness.

Use hashtag #act4mentalhealth starting today, September 4 to, help spread the word.

 

 

This is my son, Zack, 19. He also has Mental illness.

 

How did both of my children end up with Mental Illness?? That is  a good question. One I have yet to figure out. You see Mental illness is usually, not always, genetic. Neither my husband, nor myself have a history or family history of mental illness with the exception of depression. My children however have been burdened with far greater difficulties in addition to depression.

My daughter struggles with severe depression, bipolar disorder and anxiety. Her depression took over her mind, twice, when she could see only darkness, leading to two suicide attempts. Thankfully, she was unsuccessful and medication has helped her to get her life back.

My son suffers from IED, OCD, Tourettes, depression and anxiety as well. He is the one who suffers the most, difficult to treat and hard to  manage. Since birth his illnesses have been present and as a family we have all suffered, struggled and tried to live with his daily outbursts, rage attacks, destruction to our home and lives. My daughter, only recently did the evil problems of mental illness rear its ugly head to reek havoc in her life.

How can you help? How can you take action? Today starts the launch of Act 4 Mental Health by NAMI, the National Alliance on Mental illness.

Check it out. See what it’s all about. Share. Knowledge is Power

Tweet me @kimwhix or Kelsie @n0_boundaries We would love to hear from you

OCD,brain lock and School

 

Yesterday was just another day of feeling the constant uncertainty I have raising my son Zack, now 17. The constant worry, fear, helplessness that surrounds loving this child with so many challenges and wondering what will become of him. Diagnosed with IED/OCD/Tourette’s, ADD/ severe anxiety/depression/learning disabilities and 3 head traumas he has certainly got the cards stacked against him. As parents of children like mine know, we do not live day by day but minute by minute. My sons behavior, emotions and mental status can change with the wind, which makes life hard for him and us.

Yet, we are one of millions of families that live in this same constant limbo.

He attends public school, is in the 11th grade, and trying to mainstream into regular education classes, though most days prove to be stressful at best. His coping skills are non existent, he has no ability to calm himself, think through simple problems that may arise with prompts him to call me from school for a  multitude of questions. “Mom, mom, I’m sorry, I spent too much money at lunch and I am afraid you will be mad. I can’t focus ’cause I’m worried”, or “Mom, I can’t make myself go to class, I have brain lock, I just can’t go, I need to talk to you”. Just a few conversations he has called from school to discuss. Now, his ability to use the phone is a gracious “perk” he is allowed, since his teacher knows when his mind is focused, locked in on a thought, he can not move on until he speaks with me. I am so grateful for their gentle treatment of Zack and understanding his quirky needs for reassurance.

Cover of "Brain Lock"

Cover of Brain Lock

 

It is days that I get these phone calls, that seem so trivial to others, that I realize how dependant, needy, and helpless he is at times. Will he ever mature, will he ever grow up, will he ever be able to enjoy adulthood without such obstacles and baggage? The worry and uncertainty of raising and loving a child such as mine is never-ending. Not unlike those concerns of other parents loving and raising kids that are not hindered by such challenges, it is just compounded to  a suffocating level sometimes.

We try o get through each day, pray, and wait to do it all again the next morning. Hope for the best, hope for joy, hope for dreams to come true.

My son has Mental Illness, but he is winning the battle, and spreading hope along the way

15

  I pray daily that he will get better and that his life will be one of joy that he remembers. Not the rages, not the crying, not the teasing or the daily chaos and screaming because his shoes feel funny, or he can’t do a stunt on his scooter, or whatever the catastrophe for the day may be.  I pray he will be a strong, independent, self sufficient, loving and caring person. I pray he will always know how much his mom and dad love and adore him, regardless of his tantrums and anger at times. I pray he will always know he can depend on us to help him, love him and do what is best for him.

Zack with sister before Prom

He is such a loving and caring child, so sensitive and loyal. He adores his sister, his family, his dogs and friends. I pray one day that person will come to stay and the demons will forever fade away. I pray that I will always be strong enough to support and help him, to be understanding when need be and tough when the times dictate.  I admit I am scared, terrified of what his future may be. I am so afraid he will grow up sad, depressed, lonely, and self loathing despite our best efforts and despite any new treatment that may come along. I want so much for him, for both of my children to be happy people, to enjoy life and enjoy the gift that is life. I want to grow old with them and enjoy them as I have enjoyed growing up with my parents.

My heart hurts daily when I allow myself to think about what his future may be, and what I pray it will not be. I only hope with such early intervention he will have the best possible scenario living with his challenges.

   I do not allow his problems to be an excuse for his behavior, for the mean, nasty and rotten things he can and does say. I do however believe it is an explanation, one some people may not believe or accept. I, on the other hand know who and what the real Zack is. He is a charming, bright, funny, charismatic, loving child who gets lost at times. He is my heart, my love, my life. He is a treasure and a blessing, regardless of any difficulties

We are so lucky. On days when I feel like maybe I am not strong enough to raise this child, and when it gets too stressful, I remember how fortunate we are. So many people have far worse circumstances, and huge obstacles to overcome.

My mother made a print for me that sits at my bedside that says it all so clearly for me. It reads:

                             No child is an accident, for every child is given to the mother God intended.
 

     I do believe that.This child has made me such a better person, a stronger person, willing to stand up for truth and what is right, not backing down when I know something is wrong, being determined and persistent, never taking no for an answer and never giving up. I would not be this person I like if not for him.

2009 Update: Zack has been involved in a year-long Clinical trial with the National Institute of Mental Health for pediatric patients with OCD, who have been unresponsive to traditional meds, as he has. We were flown to their campus bi-monthly in Bethesda Maryland. This has proven remarkable for him it has not only helped his OCD but his depression and anxiety. I finally got him placement in the proper classroom setting called LD Neuroscience for kids with neurological disabilities at the end of the 2009 school year. After a long almost 3 year battle with the school district.  This proved to be a great move for him and he was able to bring up all grades to A/B honor roll as well as regain some self-esteem and dignity. He has also been working closely with some great therapist that come to the home several times a week.  He has more stable days than not,something I was not sure would ever happen for him, for us.  There are still some rocky roads, chaos, unstable times, but they are not as frequent. God is good.

2010 update: Hillcrest High School for 1 (this is the second) years now, another bumpy, shall I say Mountains to climb. He has not been very stable, spent a lot of time home and taught at home as his functioning declined so while in school. As is the case with illness of the mind days are counted minute by minute.

2011: I can say now, after a very rough start to the 2010 school yr, we found a medication that is helping the real Zack shine once again. It is HUGE. School is not calling me daily. REALLY HUGE !!  He feels good,”normal” he says for the first time ever. He  has some goals in place, driving and spending as much time with the church as he can. Playing basketball on the church team and going on outings.  Oh, and the launch of GoodBoyRoy last January, also such a wonderful way for him to show his Gift and talent. He has enjoyed seeing people wear his fun designs, the cool t-shirts for cool kids.

It has been wonderful to see his self-esteem slowly appear. So, we stay hopeful and optimistic in that he will have all his dreams come true (the “hot wife and 3 kids”) as he says, his own cartoon series and Good Boy Roy to be known world-wide.  One thing will never change, the love we have for him, the courage he has, the wonders I know that know that await him, and that I will never give up on him and always believe in his abilities. He is now, (2011) the most stable for the longest, consistent time he has been in his entire life and it has been the best gift for us to be able to enjoy him and he to enjoy himself.  He does still have quite a bit of anxiety, brain lock and frustration, but it is manageable for him, and for the most part not becoming overpowering in the classroom. I am daily thankful for this time, for his happiness and for being blessed with this dear, wonderful boy.

2012 update: As expected stability is only short-lived, school is a challenge, a constant roller coaster of trying to maintain, keep up, manage. He is sent home often, I am “on call” at all times, required by the school. His mood swings a constant mystery. He is driving, yes, he passed his driving test.

Many question his ability to drive, is it safe, is he safe. We felt like driving would give him one more achievement to add to many that help him feel like a regular kid, and knowing that HE is aware of his moods, not driving when he is frustrated. We found him a cute little truck and bought if for his 17th birthday. It really looks like it was made for him. Each day as I see him in it I am still so amazed that he can, and does, and this is my baby, growing, learning, overcoming.

Good Boy Roy continues to grow, bit by bit, as we continue on this dream and hope of making it a household name…a mix of The Simpsons and Life is Good. Some great Media has come his way, really too many to mention here, but one of my favorites is this article in Town Magazine

So, as always, living the life we do, loving a child with so many complicated issues, we live not one day at a time but one minute at a time. Let go and Let GOD.

The Medication guessing games begin

8 EIGHT

     On our first visit to Dr. Y., he spent approximately 30 minutes with us. We told him of Zack’s strive for perfection, his need to be perfect, first at everything, and his OCD tendencies. This led him to believe that Zack had an anxiety problem, which is true, but it is so much more. I have learned through my research that many of the behavioral disorders children have are rarely a single problem, they are usually accompanied by other issues.

DrY. began to write out a prescription, which we reluctantly filled believing it would miraculously give us an even tempered, easy going, and compliant child. This medication was an anti anxiety med. called Luvox.  Dr. Y also suggested we take Zack to a therapist for “play therapy” to help him deal with his frustrations and anger when things are not going smoothly for him. During games, play, coloring, whatever the task may be he would become increasingly irritable and frustrated if everything would not go just as he wanted. For instance if a Lego would not fit just perfect he would get angry and either throw it across the room or destroy it, or if coloring and he went outside the lines he would tear it up. When he played games with friends he always had to win, be first in line, and never get out (like in dodge ball.) If any of these things happened he would loose control, cry, yell and refuse to be out, and erupt into a full blown rage. 

I remember one occasion at the playground when he was about 5 he was trying the monkey bars and kept falling off at a certain point, however he would not give up, he repeatedly tried, even when his hands were covered with blisters until he was able to cross the monkey bars completely without falling, all the while becoming angrier with himself, and more determined, but never giving up. I have found that Zack’s worst enemies are frustration and boredom. If either of these two “bad guys” shows up we are all in trouble.

At the time of starting the first medication he was at the end of the school year of 4k, doing well, never any behavior problems (in school). We had noticed that he was becoming increasingly hyper, moving all the time and fidgeting. Then one day his teacher called and said he was becoming unruly in class and not obeying her, a problem she had never encountered with Zack. This was a sign to me that the medication was causing these problems, a call was made to the doctor and the Luvox was discontinued, and another medication started.

At this time we visited my parents and my mother put me in contact with a friend of hers who always claimed to have had a child very similar to Zack, irritable, angry, defiant, moody, violent, and would rage. While talking to this lady, also a psychiatric nurse, she suggested that Zack could be bipolar, to which I replied “no, he doesn’t fit, I know the definition of the illness and have seen the patients in the hospital, and he carries none of the symptoms.”  Zack was not hyper or manic, he was not depressed he did not talk very fast; he did not go into periods of depression. This very knowledgeable lady then informed me that bipolar disorder in children looks very different than it does in adults. Children exhibited the disorder in different ways such as irritability, anger, defiance, and prolonged rages, all of which did fit Zack.

This information peeked my curiosity so I began doing some research on bipolar illness, specifically in children. The most highly recommended book on the subject was called The Bipolar Child, by Demitri Papolos, M.D. and Janice Papolos. I headed to the library to check it out, to find it had a waiting list, so I waited.

In the meantime Dr. Y started Zack on an antidepressant medication called Zoloft, it too caused his behavior to be worse rather than better and again his teacher called from school. During an appointment with his Therapist we discussed these latest problems, at which time she too suggested I read The Bipolar Child, and especially the information on the various medications. During our conversation she informed me that some medications, especially antidepressants can cause a person with bipolar disorder to become manic, or loose all ability, what little they may have, to control their impulses.

I made the decision to discontinue this medication also, again feeling that no meds were better than the results we were having now.  Dr. Y. thought we should try another medication called Neurontin, an anticonvulsant medication. This was prescribed because some studies have shown it to be used as a good antianxiety agent. Against our better judgment we agreed to give this one a try also, hoping again for a miraculous cure for our child’s rages and behavior problems. At this time we were on our way to the beach for summer vacation with my parents and hoping the new medication would allow us all to have a relaxing and peaceful holiday. Little did we know…..?

     The storm began after 3 days on Neurontin. This turned out to be not any other storm, but a full blown hurricane in Zack terms. The book   had finally come in and I read it constantly during this time, on the ride there and every minute in between, most of the time it was through tears. After reading probably the first two pages I realized what my son’s illness was, without a doubt, the pages described him to a T. Everything t hey wrote, the moods, the personalities, the anger, the mood swings, over reacting to minor things..it was scary. It was like the author was living in our home and writing about Zack. (continued)

Zack and his mimi