Looking for support from someone who understands...

[Mamab1023]

Hello there. I am new here. I am a mother of an 8 year old son who was just diagnosed with schizophrenia. I also have an energetic 2 1/2 year daughter. I feel as though I am going through some type of grieving process for my son right son and am having a very hard time pulling it together. This is all extremely fresh so I know it will get easier but I guess I am just looking for some advice to help me get through right now. I have a wonderful support system (husband, family, friends) but no one (other than my husband) truly understands what I am going through. If any of you have some comforting words, I'm listening...

 

[Bunny]

Hi, and welcome to the board. If you feel like you need to grieve over your son's diagnosis, then grieve. You son has been diagnosed with something that is very serious and I know when you gave birth to him you did not hold him in your arms for the first time and say, "When he grows up I want him to have schizophrenia." It's heartbreaking.

Can you tell us a little bit more about him? Is he taking medications? What kind of doctor gave you the diagnosis?

You will get some great advice here, and a tremendous amount of support.

Pam

 

[smallworld]

Welcome. I'm glad you found us, but sorry you needed to.

That's a tough diagnosis for such a young child. There are other parents here whose children suffer from hallucinations. I'm sure they will be along to share their experiences with you.

Has your son been put on medication? The right medications can make a difference.

Again, welcome.

 

[slsh]

Hi mamab and welcome. I'm so sorry you are in pain right now. I don't think there's a magic "fix" for grief, though heaven knows I've searched for one for years. Just my experience - grief is an ocean and it comes in waves. There are times when the waves are just lightly lapping at your toes, and other times when it's a doggone tsunami. After over 2 decades of living with- grief in it's various stages, I think the most important thing you can do is to take care of yourself, physically and emotionally, and nurture your relationship with- family, friends, husband, and your kids. I also think it's important to allow yourself to grieve - don't fight it. Grieving doesn't mean you love your son less; it's not a poor reflection on you as a mom or a person. It just is. Again, just my experience, but fighting it made it *much* worse.

I still have days when I mourn the loss of what I expected, what could have been, when I am just heartbroken over the challenges 2 of my kids face. I'm better about just going with the flow and then picking myself up, brushing away the tears, and moving on. It's taken practice to figure out how to grieve in a healthy manner for me. Intermittent counseling over the years has helped.

It *will* get better... and then you may have periods of time when it gets rough. I just take it one day at a time until I feel like I'm drowning - then it's an hour at a time or a minute at a time. Knowing that it will pass does help, just a smidge.

Gentle hugs to you, and again, welcome.

 

[DDD]

Sending supportive thoughts your way. Of course you are devestated. That's a mindboggling diagnosis. Was the diagnosis made by a child Psychiatrist? Has he put you in touch with a support group? Is your son on medications that allow him to be functional?

I am not an expert in this area...at all..but about four or five months ago I watched a television program about a couple who sought help for their daughter. Sorry, I don't know the name or the network. The Mom had started a support group and it grew beyond anticipation. All I recall was that they lived "up North" and had finally located an outstanding hospital that specialized in this disorder. It was not an easy road but there was great comfort in not being alone.

I hope you are able to find the best experts and a chance to share with people traveling the same road. Hugs. DDD

 

[Frazzledmom]

Hi and welcome. I think letting go of expecations is the hardest thing. For me it's about hope and finding ways to be hopeful. It's about defining a "new normal". Finding people who understand what you're going through is your biggest step to self-care. Stay away from anyone who doesn't understand for a while. At some point you'll have the strength but for now surround yourself with people who do understand, they hide in the craziest places and aren't necessarily your closest friends and relatives. You've come to the right place. You'll find so many knowedgeable people here.

 

[TerryJ2]

Welcome, MamaB.
I know how you feel, and at one time, we even considered the same diagnosis your son has. Turned out he's got Asperger's, but when they're little, it is so hard to tell.
Can you give us more info on your son? Any genetic issues in the family? Is he adopted? Can he take any medications right now?

 

[Mamab1023]

Thanks for all of the kind, supporting words. I'm sorry I didn't respond yesterday. I spent most of the day trying to keep busy or crying, or both.

I guess I should rephrase my initial statement about my son being diagnosed. He hasn't been "officially" diagnosed. We have had our son in therapy since he was 5. First with a play therapist. (which I felt was a total joke!) Then with a child psychologist whom we absolutely love! His odd and destructive behaviors in school seemed to get a little better and we were determined NOT to medicate him. I have always felt that he has a 'sad' sould. Not sure if I'm wording that how I really want to but that's the only way I can really get it out. Anyway... This August things got really bad again and between school and home we told his psychologist that we were finally ready to take the next step. She said she wasn't comfortable diagnosing him and referred him to someone for testing. After a couple months of tests we were called in to go over his scores and hear what she thought. That is where we are now. She says she thinks it is schizophrenia and that we need to take him to a psychiatrist. After all my research I think she could be wrong and that it could be bipolar. Either way, neither is good and I am grieving. I know time will help but day to day life for now is hard. He is my baby boy and I am hurting for him.

He has also commited many sexual offenses for which we are taking him somewhere for help on Monday. The law isn't involved and I am honestly just realizing the seriousness of this. I aways thought he was just being curious. So, Monday we have an orientation at this center and Wednesday we go to the psychiatrist. No medications yet. Sorry so long winded. Just a lot to get off my chest but it does feel good to say/type to people who truely understand

 

[Running_for_the_shelter]

You'll find a lot of support here. When my son was four, I realized he was going to be like me and I cried. I knew life was going to be so hard for him. All I can do is try to give him good tools for his toolbox, to make his life better than mine was, and let him know he is loved. Whatever the official diagnosis ends up being (and the label may change a few times), it's understandable and very human to grieve for what could have been. There is a lot of work to do, but I hope there is still a fair bit of joy to be had.

This is definitely a group who has been there and lived to tell the tale. Best of luck to you, and welcome.

 

[DDD]

It is extremely rare to get the diagnosis you did for a child so young. It is also rare to get a bipolar diagnosis. It does happen but rarely. Who did the follow up testing? You truly need him to be appropriately diagnosed by a child Psychiatrist who likely would be helped by seeing the full results of a neuropsychological evaluation.

There are many parents who avoid medication like the plague. Some worry about side effects. Some want to avoid using substances that are not all natural. Some have religious reasons. I have seen the positive effects of correct medications on a number of our children. Although I respect your thoughts on the subject I encourage you to rethink your hesitancy. Your chld is establishing dangerous patterns over which he may have no control. He does not want to be as he is. He needs the best help available from the best available experts. The early years of life determine alot of the future. Please seek out the best qualified people to help your family. No parent can do it alone just because they love their child. Hugs DDD

 

[happy]

Hi Mamab1023, I'm new here as well. I'm going thru some things with my 7 y/o son. I know exactly what you mean about grieving, and I think that's what's going on with me. I find myself crying myself to sleep and asking where did I go wrong? What did I do wrong? I want the best for my children as we all do. I'm so frustrated because I can't figure out what's going on. But it's going to take time and we are heading in the right direction now.

[hugs] to you.

 

[JJJ]

Your son is VERY LUCKY to have you as his mom. He is only 8 years old and you have already started building a team around him to help him. That is great! Any diagnosis along those lines schitzo/bipolar will NEED medications to help. Just like you can't treat Type 1 diabetes strictly with diet, it has to be a combination of diet and medications; so goes these illnesses. You may see huge leaps once you get the right medications on board (and it may take some trial and error -- with my son Eeyore it took about 4 years before we got the mix of medications that really helped, now we only do small tweaks as he grows).

Once the medications are working, the therapy will be so much more effective. Regarding the sexual offenses -- I'm glad to see that you are taking it seriously, be aware that you will run into professional who don't believe that an 8 year old can do "those things". Here is a thread from a few years ago about others of us dealing with this: http://www.conductdisorders.com/community/threads/the-harsh-reality.15596/

The one thing you MUST do is develop a written safety plan. It must keep your son from ever being able to be alone with his sister. Our oldest, Kanga, was physically violent and we ended up putting coded locks on all bedroom doors, alarms on her doors and a camera in the hallway. Take her in the bathroom with you if you are the only adult home with them. If someone calls DCFS on you, if you can show them that you are taking it very seriously and that you have him in services and that you have a safety plan, it will go much easier.

I'm sorry you had to join us here but this is a wonderful group. I have been here over 10 years and there are some women on this board that I am closer to than many of my in real life friends because people here get it -- we really do.

 

[TerryJ2]

Hi,
JJJ has given you a great perspective and great advice. This kid is truly lucky to have you as a mom.
And yes, you do need a safety plan.
Also, I would start trialing medications. One thing you need him to do is sleep on a schedule.
Also, don't think that you will get one diagnosis and it will never change, or that he couldn't be 2 or 3 dxes, for ex, bipolar and Asperger's, or anxiety and depression.
I know what you mean when you say he was born a sad soul. My son was born angry.
You have come to the right place!

 

[busywend]

Here is a poem that has been circulated through this site many, many times. We grieve, accept and then enjoy - but we never get over it.


"Welcome to Holland"
By Emily Perl Kingsley, 1987. All rights reserved.


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
​

 

[Running_for_the_shelter]

I like the version about "Welcome to Beirut". After all, Holland is still a pretty nice place.

 

[Mamab1023]

I really liked that poem "Welcome to Holland." Really kind of puts things into perspective. Made me cry but beautiful story. We are taking our son to a child psychiatrist on Wednesday. Also, we are ready to do whatever it takes to get him the help he needs, even if that means medication. I think I previously was just wanting to try everything else I could before resorting to medication. I have done a lot of thinking over the past few days and am feeling a little more at peace with the with the situation. Whatever his diagnosis or diagnosis's, we will deal. It's just about treating the symptoms and he's always had those. Being given a diagnosis doesn't change who he is. I just need to keep reminding myself of that. Updates to come... Thank you all again!

 

[gcvmom]

Haven't read through the other replies, but besides WELCOME, I want to encourage you to join your local NAMI chapter. They have excellent workshops for families such as yours (ALL FREE) and can link you to a whole host of services in your area.

http://wwww.nami.org

NARSAD is another great organization for information on schizophrenia, and the frequently host conferences that are open to both the public and medical community. I've found them to be very informative!

http://www.narsad.org

By all means, allow yourself the time to grieve the loss of the life you thought your son would have. It's an important step for you and the sooner you work through those feelings the sooner you will be ready for the work that lays ahead. You've already taken the first important step of reaching out -- this is a great place to come for information, for venting, for crying, for laughing, for worrying, for all of it -- and it's open 24/7!

You'll also want to have some face-to-face help, so I'd also seek out a qualified therapist, a community group (there are groups that often meet at local hospitals for families coping with schizophrenia), your clergy, etc. Doesn't matter where, just so long as it works for you.

While I cannot speak from personal experience with this disease, I have met people with adult children who are able to live independently despite their illness, so it can be done. Not everyone ends up institutionalized.

(((Hugs)))

 

[HaoZi]

Wow, I almost feel the need to drag out the You Know You Have a difficult child When.... thread just to toss some light in here. I know that one (for whatever reason) really made me feel like I was among people that understood. And sometimes you have to find a way to laugh, even (or especially) when it's really rough.