Tuesday, February 21, 2012

Support is Mandatory!

It amazes me how many people I’ve made connections with regarding my son’s illness. And I’m not talking about online connections, but real, in the flesh people.

Over this year I’ve developed some deep, trustworthy relationships with women who have walked in my shoes. Sometimes we meet for coffee to get support or advice and sometimes we meet just to go to the movies and have fun. One woman is meeting with me to help me navigate the whole 504/IEP process in our school district and others are researching on my behalf. Some have made referrals to our current doctors and others have just prayed with me. Whatever the need, I feel these women are by my side. In the process I hope I can support them as well, but at the end of the day, I never realized how much I needed them until they walked into my life. I’m so grateful that they’re there.

Knowing how much these connections have helped me,  I recently arranged a fun outing for my son to get together with another kid who has the same challenges. I wasn’t sure how he would like it, but afterwards he told me, “I definitely want to do that again!” For him it was the first time he was able to connect with a child who could relate to his experience, he honestly was on “cloud 9” that night!

If you’re going through this alone, please try to find some support in your community. Check out local support groups, meet with your church or even open up to a close friend. It’s so important that you don’t go through this journey alone, you CAN’T do this alone!

Like medicine for my soul, trustworthy support has changed my life!

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Please share, where have you found your support?

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Links to Support:

NAMI:
http://www.nami.org/Content/NavigationMenu/Find_Support/Education_and_Training/Education_Training_and_Peer_Support_Center/NAMI_Support_Group/Default1066.htm

DBSA:
http://www.dbsalliance.org/site/PageServer?pagename=support_findsupport


9 comments:

  1. I say : I wish I would have found some support for having ADHD as an adult, not recognized by the majority of physicians !!
    Unfortunately, I didn't find it in my community.
    And I'm exhausted to find some support I desperately need.
    I'm exhausted to be told that I pretend to suffer. I am exhausted to be told that I am too aware of my problems to need help. I am exhausted to hear that if my mom terminated her parental rights, nothing of all this would had never happened.
    Exhausted and fed up are the most true words to describe my situation right now.
    My mom does her best, of course. Of course, I love her dearly. But well, she can't help me from a practical point of view. She has also her own unemployment to manage, so she helps me as little as she can, always with the same love but with her exhaustion.
    As you say in the US, "the children's shoemaker always go barefoot".

    My supports are in Italy whereas I am in France.
    They are currently unable to help me and I am unable to help them.

    French associations in psychiatry have treated me like I pretend to suffer and have no psych problem.
    Associations for deaf people consider me as a fake deaf because I am deaf from only one side and because I have been able to learn 4 languages (French as my mother tongue and three foreign languages).


    Sorry Mama Bear, it may not answer the question you asked. Or, more exactly, it answers negatively, in a few words : I've found no support at all.
    I just hope to find some support, like you did.

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    1. I’m so sorry to hear that you haven't found support Giulia. I hope that you don't give up, it is a life changing! Have you looked into organizations in France, or do they not exist? Is mental illness of all forms more hidden in France than in the States?

      I have been in your shoes when people don't believe that the symptoms are there and that they are as bad as they get, it is so difficult to feel bad and then have people not believe that it’s real. Half of my battles is trying to inform the truth, I feel as my son’s mom it is my responsibility to make sure that the doctors and outside support understand what he is living with. Once he gets older, I know it will become his burden.

      I hope to encourage to continue to seek support, even if it is online.

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    2. As I said, I looked into organizations (they are called associations there).
      Organizations for patients in psychiatry and for deaf patients.
      In both of these fields, I was told that I pretend to suffer.
      For organizations for deaf patients in France, I am a fake deaf (as I said, because of Single Sided Deafness, so only on one side, and because I speak four languages : so, for them, I can't be deaf, I can only pretend to do so).
      So they exist, yes. Did they help me ? No way, they even drown me. I didn't have my mother, I don't dare to imagine what would have been the outcome.

      Mental health in France is more or less like Middle Ages. Even worse than the US.
      And unfortunately, I can't be surprised (I wish I could, but I can't). the way French organizations work explains part of this chaos.
      Of course, there are some organizations who do a good job, doing their best to help. But the most important one are contributing to this mess.
      I don't believe in French organizations of mental health, after what happened (it's a very long story).
      But really, I can't rely on them to get the support I need. If they weren't, it wouldn't change a thing for me and it's like my life would have been easier).
      I would lie if I said that it doesn't contribute to my exhaustion.

      So outside organizations, who didn't do their job (and currently don't do their job : they are here only to fight in order to have the power), I am running out of solutions.
      Of course, I have my dear GP (she is my primary care doctor), of course, I find tiny pieces of support outside of these organizations (if they weren't there, it wouldn't change a thing for me. I repeat myself, but just to see the picture), but this tiny support is just a drop of water in an ocean of needs.
      For the rest, I can rely only on myself.

      I often wonder how will I manage to continue for the law if my health doesn't reach the end of the battle.
      I often wonder who will take the job between his hands if I become so sick that I have to give up. I remember one year and a half ago that I had to stay in bed for a pericarditis for a month and a half (or I ran the risk of heart failure, said the cardiologist. I was 24 years old), whereas I had to find an important sum of money for Court translations (I could find help.... in Italy !! No kidding, it's the cruel truth I had to live). I remember it like if it were yesterday, but really, who will manage the advocacy to make this law change if my health collapses to the point I have to give up ?
      GP told me that my health is starting to collapse. She doesn't think to hospitalize me (thanks God, because I have no idea on what to do with the law), but she worries and says that I need to be monitored. I don't want to have to stay in bed one month and a half again, it's my worst nightmare.

      And to complicate some more the matter, my pdoc said that I didn't deserve to receive care, as i am a too complicated case to manage (I wish I were just a perfect simple patient for physicians, without unusual features like a SSD but being able to learn four languages).
      She let me alone crying and telling me that she has other more deserving patients to care about. Wow !! How come !!
      For her, I had to prove her that I deserve medical care.
      This psychiatrist is just a monster, I fear that one day, she'll jeopardize a patient's health. She forgets that she is a doctor, she forgets that she cares patients, not robots.
      I thank myself to be able to find out info, to be able to understand, but what about the patient who has neither the knowledge nor the voice to be heard ?
      No wonder my health is starting to collapse. Being otherwise would be only a true miracle....

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  2. I completely agree with the need for support. Unfortunately, it's not always easy to find. People aren't often so open about mental illness, so sometimes they don't speak up and offer to help.

    My son is involved in a group therapy with other little boys his age (6-10) designed for ADHD, Bipolar, Asbergers, and Autism. It's social skills training and anger management and he LOVES it. Not only does he see that he's not the only kid with "issues", but he's made his only friends here because they are encouraged to call each other and schedule play dates. I have found SOME support from the moms at this group, but not a lot.

    I have another friend who has been through this before. Her son is now 15, but she has been a WONDERFUL support system, guiding me through the medication process, recommending doctors, and helping me acquire a scholarship for the aforementioned (and EXPENSIVE...) therapy. I don't know what I would do without having SOMEONE to talk to who actually understands. She has been with me while my son rages in a parking lot and she still hangs out with me... gotta love that!

    I also find support here, reading about your similar situations and looking at comments from others. It is SO helpful to know that we're not alone, isn't it? I have no idea how people survived without the internet - it's such a great way to reach out to people far and wide! THANK YOU, Mama Bear for blogging for us and keeping us connected to this great source of support. You take a great risk by putting yourself out there and we appreciate it greatly!

    -Gina

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    1. You bring up a good point about it being hard to open up about mental illness to get support. When I think back to when all my personal support systems began, it did require a risk on my part. It so easily could have gone south, turned into gossip or something worse, but I try to go with my gut and so far it has been a blessing.

      That’s awesome that your friend is still by your side after seeing a rage, that is true loving support!

      I agree that online support is really valuable. It’s where I first reached out to others. I honestly look forward to reading from other parents everyday. I’m so glad that you’re a part of this community : )

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  3. It is insanely hard to open up. In the past I have and have been met with doubt "he is just a normal kid!" or blame... Or the ever kind "how could you medicate your child?"
    My support group mainly is online, I am part of an online support group that I discovered through The Balanced Mind Foundation. I have yet to meet anyone in person with children having the struggles my little guy has. But, I must say you inspired me a bit. I think I might look into putting one together. Even once a month at the park, something like that. Support is important. That's part of why I started my blog too, hoping I might help someone through a rough time, by knowing I have been there too. Love this post!!! Thanks for the idea!

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    1. I hope you meet someone, there is something pretty cool about meeting another mom who truly “gets it”!

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  4. I did meet a mom of an older boy at my son's martial arts practice, her son only has ASD but there was something magical about being able to kind of joke about some of the symptoms. I think that if parents of "normal" kids had overheard us they would have thought there was something grossly wrong with us! I think there are a lot of people who stay in the closet, so to speak, about having a child with a mood disorder. I found it incredibly liberating to come out and say I have a son with bipolar disorder, and I love him and some days I want to run away, but I'm just doing the best I can... and it's even better to find people like you out there, that are not afraid. I hope we can inspire more people to share their stories, and to create this network of compassion and hope.

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    1. Sorry for posting this late, I just came across your comment. I agree is feels so liberating to share your life with those that understand. I’m glad you're blogging too!

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