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ADVICE NEEDED! My Doctor Suggested I Put My Son In Long Term Care

Posted By Shannon Colon On In Advice,Facebook,Readers Tips | 1 Comment

Real Moms Sharing Their Experiences and Advice

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 ****THE INFORMATION CONTAINED ON THIS PAGE IS NOT INTENDED TO PROVIDE OR REPLACE MEDICAL ADVICE, OR TO PROMOTE, IN ANY MANNER, ANY OF THE MEDICINES/DRUGS. FOR DIAGNOSING A HEALTH PROBLEM OR DISEASE, PLEASE CONSULT YOUR DOCTOR OR MEDICAL ADVISER ABOUT MEDICAL DIAGNOSIS FOR PATIENT-SPECIFIC ADVICE.*****

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Question: I am really in need of some advice. My son is 11 years old. He has a severe seizure disorder secondary to encephalopathy. Causing frontal lobe damage. He tends to be very aggressive at times. He does not communicate well and I believe he uses aggression as a form of frustration. I recently experienced A severe anxiety attack. I went to the emergency room for treatment and was put on a mild sedative and told to follow up with my primary doctor. My primary doctor is also our family care physician. During our conversation she suggested to me that I put my child in a long term facility. This has outraged me. I was not there about options for my child I was there for options for myself to deal with the anxiety and stress that comes from taking care of a special needs child. Has anyone else had something similar like this happen to them. I do not need to be anonymous. I would like to respond to comments and questions.

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Answers:
  •  Katayoon A. The fact is, no one really understands us except for us special moms who fight everyday for our children. We have heard so many negative comments, so many discouraging news from doctors ( one told me I should not be hopeful that my daughter would ever learn anything!) , we lost so many false friends ( good!) , so many sleepless nights we have had, and don’t even let me start on the constant starring of strangers in the street!!! I’m glad we can vent here in facebook where we can find similar people all around the world who are fighting the same fight everyday! What works for me many times is reminding myself that there is nobody in the whole world who loves my kids more than me. I get energy from my love for them. I constantly research online to find new methods of dealing with the problems I’m facing. Ranging from hemp oil for seizures to behavioral therapy for my son who has a trauma from this whole sickness of my daughter. Ladies, believe in yourselves, keep your head up and march on!
  • Katayoon A. Jillian my daughter also got herpes encephalitis when she was 8 months and this caused a global brain damage. I refuse to let my daughter be sent to a home as long as I am alive. I salute all you mothers out there fighting and caring for your children.
    As for ways to cope with the stress, I listen to loud, very loud music in my car. I accept every help I an get from family so that I can have a little alone time. It is not much, but it helps not to get crushed by worries and stress. My doctor also wanted to prescribe antidepressants for me, but I refused to take any, because I need to always be alert , day and night.
  • Debra H. When they mention facility I want to slap them , but instead I walk out and they never see me again. 
  • Gayla M. This is an awesome resouce of support. ..having a place to communicate experiences, thoughts, feelings, and possible solutions with other parents can reduce stress, build confidence, and relationships.
    Each parent knows their child, has exhaustively researched their child’s medical issues therefore pretty much knows what their child needs.  I believe the key factor that may be known but put aside because of all the care and concerns children require. Taking care of Mom. First when humans experience a frightening situation the body reacts which is known as the “fight or flight response” which is a normal reaction. During this reaction the body releases chemicals to prepare to fight/defend or flight/run. This is an intrinsic design to survive/preservation of life. That being said we weren’t designed to repeatedly experience this chemical release repeatedly through out each day and day after day. Although many people have this exact life. The result is their body looses control of the chemical releases. .meaning the body may release the”fight or flight response” chemicals when it isn’t needed. It presents like PTSD. While many believe this is a psychological issue which it is in part. There is also a physical aspect; chemical imbalance. There are some medications that assist in bringing the body back into balance.There are several needs Mom can arrange for herself. ..building a support system emotional and assistance with caring for herself and her child; family, friends, organizations that provide in home assistance
  • Stacie M. my son is 20. i can’t count the number of times I’ve heard that from “concerned people, friends and family “. Thing that pisses me of the most, they never say what can we do to help out etc, it’s always suggestions of where he may live eventually. no way.
  • Debra H. I will care for my granddaughter til the day I die !!!
  • Kim P. Be strong. We found out years ago our daughter responded to firmness. ( not yelling, just firm. )No is no always. Always always. Structure is so important to her. Even tho she cannot talk or use devices to communicate she does understand! We have to talk talk talk to her about even the smallest thing out of the norm. Tell her the expectations of how she will act. And just like a 2 year old. Leave, remove her from stimulus, take away her favorite toy and exit when the behavior arises. Expect severe outburst the first few times. But when the child sees mom or dad is not moving, changing they begin to catch on. We have to be in control for them. Her teacher k-5 was amazing this way. But yet loved our daughter so much. 14 years later our daughter still keeps a picture of that class. I really think she strived because of constant firmness. Hope this helps as I Know every child is so different
  • Missy S. Please do not take offence to what your doctor said she is looking out for you. Your son is aggressive because of a condition neither he nor you can control. Your anxiety that you have is not just based out of his disability but what he can do to you. Your son if he has not is very quickly going to be in full hormonal puberty that aggression can and most likely get worse to the point of dangerous and deep in your heart even if you do not want to cognitively want to admit it you know that it is true. Their are many forms of long term care one is a facility setting the other is a therapeutic group home, where they are specially trained to deal with the aggression you are experiencing. I have worked in such group homes and the individuals there lived quite normal lives to the best of their abilities being kept safe, the families could come and go as they pleased. Now that said you need to know you doctor is trying to help you because she see what could happen. If when you son hits full puberty and if he get aggressive and you or someone else has to go to the hospital the hospital is required to contact children’s service (all special needs parents nightmare). When they call they will not be calling for your sons safety but for yours and or any other person in your house hold. They will not be investigating safety of you toward your son but will investigate the safety of your son towards you. They will have police reports, they will have hospital records and if they feel your son puts you in danger they could remove him and they will choose where he will go. Where if you take charge you have a choice of where your son goes and how much control you have in the situation. I understand Not wanting to consider this as an option, I would not want to consider it an option, we fight and fight to have the best for our children that sometimes that fight turns into barriers in us seeing what others out side looking in maybe seeing. NO ONE want to have their child away from them. I do not know if you have other kids but if you do you also need to consider them they need you and the situation you are in is starting to affect your health in a negative manor Your son is still young I know, but also look at what occurs when he is an adult. I have worked with individuals who parents passed away and did not help them transition to a group home where they were able to develop a support system it is 1000 times harder for the child to have to deal with their parents death and then also moving losing their home having to get to know other people without their parents help. When parents help their children to transition into supported living they have so much more success. I know that is something that is down the road before he is that age but I am putting that here because of how may people in this post I have seen state “over my dead body” That is a very selfish though because one is not allowing their child to have the best possible life not just while they are alive but after they are gone.
  •  Kiley S. This is a tough situation, my parents went through a very similar situation. Ultimately It comes down to what is best for your son. With my brother, he went to a facility for a short time where they helped his aggression.  Studies show that when you raise communication, you lower aggression. If you’re not comfortable getting external support right now, I would suggest researching various types of communication devices / supports (PECS, dinovox, proloquo, etc). It may also be beneficial to research CPI (Crisis Prevention Intervention) techniques to help you handle aggressive outbursts in a non – violent safe way. I am a special education teacher at the high school level, a lot of times it only gets harder as the kids get stronger and bigger. It’s super important to get your team on board with this. Whatever the school is doing to maintain and manage behaviors should also be used In the home to create optimal consistency.  Feel free to message me if if I can help in any way.
  • Sandy B. My thoughts are similar to Katayoon Azadegan, maybe try a anxiety medicine to? I used Buspirone for awhile. and an inhaler on my really bad days. my disabled daughter also takes buspirone. This helps her control her moods, since she’s not able to  communicate her frustrations very well. she’s 18 now but was very aggressive as a child. I never used discipline but positive reinforcement to get through to her. this seemed to lessen the aggression.
  • Cynthia E. My 15 yr old is deaf, medical issues and severe aggressive behavior. I know as an adult she will need care but I’m no where ready to give up on her. I know people are begin caring about me but it makes me mad too.
  • Lori R. An antidepressant shouldn’t make you less alert. But it can honestly change your life. Things that can seem so overwhelming are so much easier to deal with. I know for myself, it’s not only better for me, but my hubby and children as well. I am able to  function better. I am much more pleasant. Taking something is not a sign of weakness. It’s being proactive!! We, as special needs parents, have a lot to deal with. Why not do something to help yourself?
  • Jillian S. My daughter is 11 and also has a seizure disorder following herpes encephalitis. She requires a lot of care and is no longer in school. At some point in her life she will have to go into a home which really scares me but I am not even close to ready for that. I have had others ask me why I don’t and I don’t let it bother me to much. They are not in my shoes so they couldn’t understand
  •  Kara M. I saw a very particular type of therapist who does EMDR therapy to avoid anti-depressants. I started every two wks then moved to every four, now I go every 6 months to maintain. It helped me release everything I was holding onto to be strong & I learned how to really take care of myself the more I slowed down & got real about the limits of my mind & my body. I started to strategically outsource some responsibilities. I did much better & I also learned how important it was to have my child be supported & comfortable with more than just me or a few people. U The truth was that my biggest state of anxiety came from the what ifs. What if something happened to me. Who would love & care enough to do it or how would my child cope without me. I also wanted to be just a mom sometimes to. Outsourcing allowed me to see what would be available if I wasn’t & put my heart at ease. I was holding on to tight. Big hugs to you. Your doing great! Xo
  • Carrey G. Look into a therapy dog that is crossed trained to be a seizure dog. The way I understand it (we’ve never had one ourselves), it would be like another set of eyes and ears in your home. Plus, adds comfort to the child. And can he use a picture exchange program at all? He doesn’t have to have a fancy device to exchange pictures, and it helps with communication, which will help with his frustration level. The lady that suggested CPI is right on!!!! CPI is awesome!!! Schools, parents, day cares, churches, cops, and people on the street should be trained in CPI. As for the Doctor, don’t shoot the ol’ doc. They all mean well, they are trained for YEARS to be in control, and if they can’t control it; it weirds them out.
  • Amanda W. Don’t be outraged. Your doctor is trying to help you and let you know it’s okay. Maybe it’s something you can try for short term or for respite.
  • Katayoon A. Jillian my daughter is 5 years old now. She is learning many things now but still she is classified as severe hanicapped. Cant walk or talk or sit and also has seizures. But comparing to the day we got out of the hospital she has made huge improvements. Give your daughter a huge hug from Vivian ( my baby girl ) and tell her she is not alone in her fight.
  • Yvonne K. it was just a suggestion…I bet you suggested (in your mind) it’ll happen when hell freezes over! Special needs Mom’s rock!
  • Johanna S. My daughter got encephalitis and a cold sore virus she had brain surgery the Doctor removed her front temple lobe . She is no verbal does not walk is total care. When she was around 2 yrs of age I took her to be evaluated . One of them told me to put her away and focus on my other child. I was crushed ! I couldn’t believe anyone could say such a thing. But years later I wondered if he said that in case I was wanting an out. I wasn’t but maybe some do and it was his way of giving me the option. You just have to go on until you find someone who will understand what you and your child need. My daughter is now 37 yrs old.
  • Carla J. I think that its sad when a doctor suggest sending your child away.if you are so severe you could not care for her well that’s another story. But, if you feel that you need help dealing with the stress of it all. Then another doc. Is what you need.
    ADVICE NEEDED for Special Mom shared from Facebook post #psnm00857 [1]

 

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