New member: mom to ds with- adhd, BiPolar (BP), sensory processing disorder (SPD), and cognitive disorder

Discussion in 'General Parenting' started by jcox, Jan 5, 2009.

  1. jcox

    jcox New Member

    :anxious: Hello. I am the mother of three children. Two wonderful girls who are ten and twelve... and a challenging 6 y.o son named Elijah. He has been a difficult child since birth. He was my third child and my worst labor and delivery. He did not know how to **** his bottle when he was born. The nurses had to teach him how. He used to cry a mad cry instead of a sad one and was always easily overstimulated by things being too bright, loud, crowded, etc. He did not like to be held except to eat and then wanted to be down immediatly. He never crawled, but was on track with the rest of the milestones.

    When he learned to walk, he also learned to bite and hit. None of the child proof stuff was good enough for him. At the age of two he learned how to stack pillows, step stools etc. on top of chairs to make it high enough to open bolt locks and escape. He has always been quiet and sneaky. At the age of three things got worse. I enrolled him in HeadStart and that lasted only three months before they kicked him out because he was a "Safety Risk" to the other children because of his agressiveness. A few months later I took him with me to a daycare I worked at. That did not last long either. He was biting constantly and one day stabbed a little girl in the face with a pair of child proof sissors so bad she needed several stitches. At the age of three he began raging at times for up to four hours nonstop. He threw things such as furniture, hit, bit, kicked, screamed etc. When he was done he had no idea what happened and why people were upset with him. He also began having night terrors at about that time too. They would be graphic including him getting eaten by animals, getting hit by trains, drownding etc. and were very bloody. He started counseling at the age of three and went on medications at the age of four.

    For the next few years we were blessed to have him enrolled in an excellent family child care home based preschool program. Elijah continued to be agressive there as well as hypersexual touching little girls right in front of the teachers. His teacher was amazingly patient with him and worked to get him accomodations including a 1:1 aid. Instead of sending him to kindergarten last year like we could have, we opted to keep him with her. She did a whole kindergarten curriculum with him so he would be ready when the time came to adjust to school. I wish he could have stayed with her forever, but know he has to grow up.

    This past fall he started kindergarten at the age of six. He still has major issues socially. He has been suspended five times already this year and was kicked off the bus. I had to quit my job to be here for him because the school was constantly calling me at work to come get him. I have had to knowledge myself about all the laws and regs because they did not want to help him. I got him started off the year with a 504 plan that included a 1:1, which I got turned into an IEP that is being constructed. They are giving him one under emotional disturbance. Before the year began I told the school my concerns about him not doing well in a class with eighteen other children but they would not listen to me. They waited until other parents were complaining and not sending their children to school because of my son. Then about a month ago they decided to put him in a SPED class they call a transition room with only four other children who are third and forth graders, his 1:1 aid, SPED restraint trained teacher, and a class aid. He seems to be doing better in there. They also cut his hours at school in half. The school is very concerned about his hypersexuality, touching teachers etc. They keep pushing me to have him placed inpatient.... only if the would have seen him a couple years ago.:laugh:

    Recently this past couple months he has began saying things that concern me. About 2 months ago we were running with the puppy, laughing and having a good time. All of a sudden he looks at a pond we were walking by and said "Mom I am going to jump in that water. I don't care if I drowned". Then that night as he was leaning over the banister in our living room he tells me "Mommy I am going to jump. Then you will have to call 911". A couple weeks ago he tells my hubby "Dad I am going to jump out the window, sit in the middle of the road, so I can get hit by a car. Then I will be dead and everyone will be crying". We live on the 2nd floor.

    He has always been agressive with animals: throwing the cats out our windows, chokes the puppy, hits her, kicks her, etc. He began telling me about a year ago that there is a person inside his body who tells him to do bad things. One day he cut his foot. He was really upset screaming "Stop laughing at me"! I said "Honey Nobody is laughing at you." He said "Yeah belly is. Tell him to stop." He has always told me that belly tells him to do bad things. His counselors always blew it off but I think he really hears voices.

    His counselor that he was seeing for the past three years told me a couple months ago that she does not know how to help him and I needed to find somebody with more expertise. He said he is a challenge, like a puzzle. So we started seeing a new psychiatrist last month who I am not so sure about. He put him on Lithium which has made him more stable, but there are a few things I don't like about him. There is not one toy in his office, he is not open minded about any of the newer medications, his office is not set up for children, and he talks to us about Elijah, but never directly to him. Elijah has gained 50 lbs in two years on the Risperdal. He is currently on Risperdal, Celexa, Vistaril, Clonidine, and Lithium. The medications have helped his rages and anxiety, but he is not totally stable. We have seen improved results on the Lithium. I am concerned about all this weight from the Risperdal. He used to be so active and he no longer is. He eats a healthy diet, but still gains all this weight. He still rages, but now they last about twenty minutes instead of three to four hours. I have been contemplating taking him to Boston Tufts Medical Center because I heard back from them and they have a whole mood disorders clinic for children.

    I have included a poem I wrote about my son to help you understand our situation:
    Wonders of a mother ​
    I wonder what tomorrow brings
    For a little life all filled with fright
    I wonder what tomorrow brings
    For a little boy so afraid at night

    Can not control your body
    From all the terrors inside
    Darkness fills your heart
    You want so much to hide

    Here I sit
    On a cold dark night
    Wondering what the future brings
    My heart fills with fright

    People do not understand
    What goes on in my son's land
    They do not know him
    They don't hold his hand

    The fears that he shows
    We are the only ones that know
    In a world so full of people
    We seem all alone

    Wishing there were a magic pill
    To make things all great
    Wishing the rain
    Could not flood his gates

    Wishing he could
    Be a happy boy
    Sitting quietly
    Playing with his toys

    Laughing and playing
    Like the other kids do
    Getting good grades
    Getting along good in school

    Deep in his heart
    I feel his aches and pains
    For I am his mother
    I know how his heart rains

    He does not want
    To live like this I know
    For only I wish
    To others he could show

    The happiness he feels inside
    That fills my heart with pride
    People do not understand him
    That is why my heart cries

    Wishing his moods
    Would not be so blue
    Wishing that others
    Could understand him too

    Wishing that schools
    Could just cooperate
    Wishing here lonely
    His life could be great

    I wish that he
    Gets the help that he needs
    Wishing in life
    He does succeed

    Not knowing what to do
    With a boy so happy AND blue
    Filled with anger and hostility
    Only wanting others to see

    To the hospital
    I can not let him go
    For he is a baby
    That only I seem to know

    His pain is invisible
    Behind a smile so bright
    Wishing others could see
    What can make his heart light

    There are three children in there
    One is nice as can be
    That is the one
    I wish everyone could see

    Then there is the angry one
    Who hurts others until they cry
    He will tell you I hate you
    And laugh as he hurts you

    There is my sad son
    Does not know what he has done
    Wonders why as people are mad
    Asks "Why are you sad"

    The little looks on his face
    Are filled with such sadness
    A boy locked inside
    A world filled with madness

    I love him so dearly
    As I sit here so teary
    Wonder what I could do
    Have I been a good mother

    What could I have done different
    So he did not end up this way
    My heart fills with thunder
    As I pray to God each day

    Please give me the strength
    Patience to deal
    Please let people know
    His disability is real

    Please help them understand
    Do for him what is best
    Please look over us lord
    Keep us all safe in this land

    I wonder why is my son
    Stuck in this body
    That does not not cooperate
    Will he ever be free
    From this bipolar gate

    Thanks to all who read my long post.

  2. ML

    ML Guest

    I just have a minute before rushing out to work but wanted to say "welcome" and that others will come along. Your poem is beautiful. Big welcome hugs xoxo ML
  3. bran155

    bran155 Guest

    Hello and welcome. I am so, so sorry you are going through all of this. I can only imagine how heartbreaking this is for you and your family. I commend you for all of your efforts. You are great mommy, your son is lucky to have you. Good for you for pushing the sd to get what you need. Don't ever let them bully you. And if you are not comfortable with your doctor then change, look for one who will work with you and your son. Sometimes it takes a few to find the right one. I think it was good that the therapist was honest in telling you that he can't help your son. Often times it takes some time to find the right fit, you'll get it. I would definitely take the voices and "belly" seriously. Does he actually say that he hears voices? Are the voices always belly? Is is possible that belly is just an imaginary friend? In any event, that should be addressed. Escpecially because he is telling your son to do dangerous things. Poor thing!!! I can relate to the weight gain. My daughter gained 40 pounds while on Risperadol. In only 3 months. It is very frustrating.

    You have come to the right place. You wil love it here. The moms and dads are so understanding and full of advice and support. We all can relate to one another. We all go through very similar struggles. Other's will be along to give advice. I just wanted to say "welcome".

    Hang in there and God bless. :)
  4. bran155

    bran155 Guest

    p.s. I love your poem!!! :)
  5. TerryJ2

    TerryJ2 Well-Known Member

    Welcome, JCox. Here's a cup of tea and some soft music.

    Lovely poem. He is very lucky to have you. You will get to the bottom of this!

    It definitely sounds like you need to look for another psychiatrist. You can make an appointment to go in by yourself and see if they have toys, and what their philosophy is.

    Your boy sounds very bright. He is going to be a major handful as he grows older. You are doing the right thing, and need to be even more assertive and aggressive in getting the right doctor on board.

    I would also suggest a family therapist, so you can role play and practice certain behaviors so you can all work together, figure out what your son's triggers are, get him to work through his triggers, and teach him tools to learn compassion and empathy.

    He is on a lot of medications. I'm not sure if he needs to be on that many all at once. Don't some of them duplicate one another? I've heard an awful lot of this board about kids and weight gain with-certain medications, so you are in good company. They will join you shortly.

    I hope you are holding up under all the strain, and that you can take time to see a counselor on your own, to learn coping skills, and take time for walks, reading, and going to lunch with friends. It is so important!
  6. gcvmom

    gcvmom Here we go again!

    Gosh, if you lived in Orange, CA I could recommend an EXCELLENT pediatrician/adolescent psychiatrist -- we LOVE ours.

    Anyway, sounds like you are doing everything you can to help your son, and agree that you should probably seek out a more appropriate psychiatrist for him.

    The weight gain is not uncommon on Risperdal. We tried to deal with it by increasing exercise and trying to modify diet as much as is reasonable.

    Terry, Bran and ML all gave you excellent advice, so I don't really have much to add except my welcome, and I'm sorry you had to find us!
  7. lizzie09

    lizzie09 lizzie

    Welcome Jcox

    What a truly beautiful poem

    Welcome here..its a good place to be with great kindness on board not to mention the expertise of others that I myself dont have...

  8. compassion

    compassion Member

    Janice, I lovED your poem!!! I can so relate!!!!
    mood stabilizers really help my dsauhter. She is on Lactimal. She also on abilify. From my reading, this is the lateat treatment for BiPolar (BP). As you expressed, stabilization takes a long time. Welcome!!! I also reccomend finding a psychiatrist that has experience with BiPolar (BP) children and adolescents. Compassion
  9. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Hi, and welcome. What a sad story! I am convinced he is hallucinating. This is a very sick child. Unfortunately, gaining weight may be a moot point. He will probably need antipsychotics and they do cause weight gain. As do mood stabilizers. Again, is there any schizophrenia, bipolar or even schizoaffective disorder in the family tree? The poor kid melts my heart. I really don't think he can help what he does. I personally feel it is a bad idea to put a child who may be hallucinating on any antidepressants or stimulants (not sure what Vistorol is). That Celexa would make me nervous. Are you sure he has bipolar?
  10. jcox

    jcox New Member

    Hi, and welcome. What a sad story! I am convinced he is hallucinating. This is a very sick child. Unfortunately, gaining weight may be a moot point. He will probably need antipsychotics and they do cause weight gain. As do mood stabilizers. Again, is there any schizophrenia, bipolar or even schizoaffective disorder in the family tree?

    I am not sure about his biological sperm donor or what ever you wish to call him. My hubby has been his dad since he was three weeks old. I had a relationship with a guy while my hubby and I were divorced. He raped me, was very violent, abusive physically, verbally, emotionally, stalked me, was very controlling etc. He obviously had some issues that were undiagnosed.

    The poor kid melts my heart. I really don't think he can help what he does. I personally feel it is a bad idea to put a child who may be hallucinating on any antidepressants or stimulants (not sure what Vistorol is). That Celexa would make me nervous. Are you sure he has bipolar? I have read that Celexa is not a good medication for people with bipolar to be on. Am I sure that he is bipolar? No I am not. I am not a doctor I am just going by what he has been diagnosed with. From what I read about children with bipolar he seems to fit the profile.
  11. jcox

    jcox New Member

    I would definitely take the voices and "belly" seriously. Does he actually say that he hears voices? He has never been good about talking about feelings or things that make him upset. He talks well, but has problems stating certain things. No he never actually told me that he hears voices. He has told me about the person inside him in control making him do bad things. Are the voices always belly? Yes. He always calls them belly. Is is possible that belly is just an imaginary friend? Not unless a child can have an evil imaginary friend that makes them frightened. By the look on his face I can tell it seems real to him. He gets so mad, upset, and even frightened.
  12. Wiped Out

    Wiped Out Well-Known Member Staff Member

    Welcome Janice,
    I'm so glad you found us, sorry you needed to. I would definitely be looking for a new psychiatrist. We had one once for my difficult child that never seemed to talk with difficult child. For that and other reasons we ended up switching.

    I'm sorry he is struggling. Like Midwest Mom, I wonder about him being on the Celexa with the Bipolar. Each child is so different though. I know my difficult child cannot take any stimulants or anti-depressants because he just rages too much then.

    I'm glad you are in the process of getting an IEP. We have a special education forum here and the moderators are wonderful so if you have IEP questions I would definitely look there too.

    Your poem is beautiful. Gentle hugs to you.
  13. SomewhereOutThere

    SomewhereOutThere Well-Known Member

    Actually, your poem broke my heart. Sadly, sperm donor is half of his DNA, and since his history is unknown, but obviously not good, it may be hard to diagnose him. The more the psychiatrists and NeuroPsychs know about the biological family, the better they can diagnose. I have had these issues because my kids are adopted--it's not fun only having limited to no information. Although, yes, he fits bipolar, he could also have other things--he also has a lot of Autism Spectrum Disorders (ASD) traits, although I'm pretty sure Autism Spectrum Disorders (ASD) is not the whole issue (he can have Autism Spectrum Disorders (ASD) and a psychiatric problem too). I would work on two fronts--get a new and better psychiatrist (sometimes asking around as to who has helped others is a good idea) and I'd get a neuropsychologist evaluation. Together you could get some answers that you don't have yet. Both of these professionals are the Head Honchos of Mental Health, so to speak, but everyone can find a lemon--I found many lemon psychiatrists for both myself and my son. I'd get a second opinion on the psychiatrist's medications and get that neuropsychologist evaluation. He's so young you still have so much time to help him.
    You are a very gifted poet.
  14. Nomad

    Nomad Guest

    You have posted a lovely, heartwarming poem.
    I believe myself and many others have experienced many of the things you have described in your post.
    It would also concern me that the doctor your child sees does not have toys in his office. Play therapy is the primary tool used by psychologists and psychiatrists when exploring the sub. mind of children.
    You might want to ask the doctor about this....there might be an explanation.
    Perhaps he has the toys in a bin in a closet and has used them in the past with your child with no luck or plans on using them in the future.
    I think it is relatively common to experiment with varying medications when working with a child that presents with difficult problems.
    Our child gained a lot of weight on Risperdal and had other problems as well. We eventually switched her to a medication called Abilify (plus other things). This worked well. However, we did use a small dosage of Risperdal too PRN (as needed)...when she was under a lot of stress.
    I would suggest you do some of your own research....esp. with reference to diagnosis's and medications. Many of us have received help by reading a great book called The Bipolar Child, by Dr. Papolos. If things don't improve or at least stablize, I wouldn't hesitate to take your child to the mood disorder clinic.
    I also agree to think about family counseling.
    Having a special needs child, esp. with other children in the family, places a unusual hardship for all concerned.
    Please take time out for yourself when and where you are able.