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Our son just got diagnosed, I have lots of questions! Help


#1

Our son just got diagnosed and man do I have a lot of questions. Our son is 13 and he recently told us he was seeing and hearing people that he didnt think were there. And that he has been having visions for years. He was hospitalized to get on meds. Says he no longer sees or hears any one. He has always been…different. Has a big problem with speaking. He was extremely behind in school. (2 grade reading but in 6th grade) is that common with schizophrenic kids? So I started homeschooling him but its been difficult. Seems like he gets a concept down then the next day acts like it something completely new to him. Help? Any suggestions for me?


#2

I’m so sorry that you have to go through this. Expect all the stages of strife and learn to be kind to yourself. Some days you cannot do a thing to help but most days if not everyday you are his lifeline to reality. I think I would try to talk about it openly if he is able to talk about it. Having love and support is essential for better outcomes.

Learn all you can about his diagnosis and read and welcome to this forum. I think you’ll find a lot of good information here. God bless.


#3

I’m sorry your child has this condition. My son was older (21) when he developed the symptoms and didn’t experience any academic troubles as a kid. You mentioned communication issues and learning issues. I guess it could be possible to have another underlying issue that would affect his academic performance. We sometimes see Autism and Schizophrenia co-occuring. It would be a good question for his Dr. Hope that your son does well on his medication.


#4

Hi, I have schizophrenia. When I was a child, my school would move me back and forth from the remedial to the advanced section of the class. Besides the environment itself, it was extremely traumatizing. I found that my own best method of learning was hands on in independent study. One challenge that your child may have for learning is the medication. I have been on several antipsychotics, and some of them interfered more with my ability to process, communicate, and store information. It certainly is not to say that the medication that your child is taking might be the best.

What someone said earlier about your self-care is very true. Having a family member with schizophrenia is traumatizing for the family. Family peer support can be helpful.

The best thing I can recommend from only my world-view is to show the same compassion for him as for any family member who has what is probably a life-long illness.

After getting the right medication and understanding that I had to make lifestyle changes as with any other life-long illness, I was able to be happy. I now work on a psychiatric unit part-time where I have been for over 10 years and own a web design company.

One final thing that I would suggest is reaching out to NAMI in your area. They offer a class called NAMI Basics and the purpose of the class is educating parents who have children with mental illness. If you also have issues with behavior and your frustrations, many cities offer support groups for that purpose. Family peer support (other family members who have gone through the same thing) could be a benefit to you as well. Your local NAMI may also have some ideas where you can get this type of support.

I feel for you and your family, but the outcomes can be very good. Good luck.


#5

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#6

My son, now 24, was dignosed with paranoid schizophrenia at the age of 17. It has been a long 7 years, but I remain hopeful every single day. During this time, we tried 6 antipsychotic medications with no success. During which time, he experienced voices and delusions, was very suicidal at times, and was extremely paranoid about just about everything. Out of desperation, we also tried ECT (brain shock treatment), but after 2 rounds, no success with that either. This past April, we decided to try clozapine. We had been apprehensive to try this drug because of all the negative side effects and the requirement to have to get blood draws weekly. But in our situation, nothing else was working. He was considered treatment resistant. As it turns out, clozapine was our miracle drug! My son has responded very well to this drug! He still experiences voices, but they are not as loud and distracting, and he is able to focus a bit more and engage in conversation. He has recently mentioned wanting to either get a part-time job and/or even possibly enroll in college part-time! I feel like my prayers have been answered with this drug.

You mentioned concerns about his learning abilities. Just remember that with schizophrenia, he is experiences many distractions in his mind and hearing the most cruel and negative things a person could hear. This would affect anyone’s learning ability, as well as being able to communicate with others. Remain patient, and just keep trying as he can, at his pace. Getting him treatment that helps him should always be the first priority. Because again, if the illness is in full affect, he will not be able to focus or retain any information in front of him - no matter how many times it is repeated.

Here are some suggestions and advice I would like to give you:

  1. Make sure you seek the best psychiatric care available in your area, most specifically, a doctor who specializes in schizophrenia, specifically. Not just any psychiatrist is “certified” in treating schizophrenia. They may be in the field, but not be familiar with how to treat this illness.

  2. Seek cutting edge therapy and programs for schizophrenia. There are cognitive programs for first episode phychosis paitients. And new studies show that the sooner these programs are engaged, the more successful longterm prognosis can be for these patients.

  3. Also include Cognitive Behavior Therapy (CBT) into his care plan. In my research, the biggest thing I’ve learned is that this illness severely impairs a person’s basic cognitive skill set (thought patterns, etc). CBT will help his focus on the things he is most struggling with, and put “tools” in his toolbelt on understanding how to indentify what is what and how to cope with these symptoms.

  4. Always remember, and remind your son, that the symptoms he is experiencing are his illiness, NOT HIM! There is a very clear distinction in this. This is very important to ensuring he becomes more comfortable with you as his caregiver to be open and honest about the things he is experiencing. A lot of times, people with this illness are ashamed and afraid to share reallybwiat they’re feeling! So making sure he understands these things are his illness, not him, will help significantly.

  5. Take the power out of words like voices, delusions, paranoia, and even the name of the illness schizophrenia! Don’t be afraid to say these words to him, and don’t whisper the words, or say it as if you don’t want anyone else to hear these words. Use these words yourself to ask him how he is doing with these symptoms. Make them comfortable to you, and use these words in your dialogue with him often. The point is that the more you’re comfortable with these words, the more comfortable he will be with using them as well, and will have no problem speaking to you about them!

  6. Find videos about schizophrenia that help explain to him what this illness is exactly. Don’t choose any that give long sob stories about a particular persons experience with this illness, but rather those that explain what the illness is.

  7. Reaearch the heck out of this illness, and stay vigilant on all you can about it. The more you know, the more you can learn and understand treatment options as well as how to just simply interact with a person with schizophrenia on a day to day basis.

  8. Find support groups for patients and also for caregivers. NAMI is phenomenal! Join forums like this, as well as closed groups on Facebook, etc.

  9. Remember that this is a lifelong illness, like diabetes, or Chrone’s disease. There is no cure, so your focus should be on therapy and treatment and how to make him as productive as possible.

  10. Raise awareness about mental illness in general. Even if that is just owning and not being ashamed of this illness. And able to openly speak about it to others in yours and your son’s lives. Awareness and education are the vehicles to removing the stigma behind mental illness. Stigma exists because of ignorance to what mental illness really is, and that it is real!

I commend you for being diligent and reaching out here so soon in your journey. And I would encourage you to continue to do that!

I hope this helps you and your son. And I wish you the very best in this battle.

God bless him, and you!