Stigmatized by a parent…

To my son’s father:

Dear “my sons dad”,

I, once again, hear your concerns about our son being on medication.  There are obviously risks involved with being on any medication.  If you think back, I’m sure you will remember how I would obsessively research anything related to our son’s well-being, talk to multiple doctors and teachers before making any decisions.  I’ve never taken his health lightly.

Even when the Doctor that evaluated him in the 3rd grade told me that “I need to get him on medication ASAP!”, it still took me another year before I agreed to allow him to try it and that was only after a ton of research, multiple doctors saying the same thing and finally Dr. M convincing me it was ok.  He has reviewed all the articles written on pediatric antidepressant use and explained it to me in great detail. You can call Dr. M if you don’t believe me.  I know you respect him, so if that’s what it takes, please do it.

When I finally gave our son the medicine, the difference was so immediate, that I felt bad for making him wait a year while I researched it to no end.  Think back to how he wouldn’t go outside at all in the house.  Then we started the medicine when we moved into the townhome and he was outside running and playing with all the kids.  That was the medicine!  It was immediate and profound!

Each time our son grows a few inches or gains a few pounds, the amount of medicine has to be adjusted.  Just like your insulin.  I didn’t know that when he hit puberty, I floundered and didn’t know what to do, but I did know that he was not ok.  The first two changes we made to the medicine didn’t work, so I continued to meet with the doctor, over and over, until we got him to a better place.

This year he grew again and I started to see that self-loathing, defeated, I give up attitude that tells me it’s time to meet with the doctors again.  Even though we meet with the doctor every three months when things are good, a lot can change in that time, so when I see concerning behavior I pick up the phone immediately.

In all likelihood, this will continue to happen until he stops growing…around 25ish?   After that he should remain fairly consistent.

 

I am the first to admit that I believed in my heart of hearts that our son had Asperger’s.  I disagreed with the Anxiety call from the beginning because I just didn’t understand how something that seems so innocuous could cause all the symptoms that he displayed.   It wasn’t until he started the medication that it all became clear and I finally realized that he really isn’t on the spectrum.  Asperger’s doesn’t go away overnight with medication, anxiety can and in his case did!

I know you have been dialoguing with your new bride for years now about how I should be handling him differently because of his issues on the spectrum, but I can send you four different doctors, separate evaluations, that all conclude the same thing.  His core diagnosis is Anxiety, and when it’s not treated, he has an entire alphabet of acronyms that describe the secondary symptoms, BUT he does not suffer from being on the spectrum.  And if he doesn’t receive continuous treatment for the anxiety, he suffers from depression because fighting the anxiety exhausts him.

The bottom line is that he doesn’t produce enough Dopamine.  That’s it.  That’s all.  Just like you don’t produce enough insulin…and when you have too little or too much in your body; it affects you in profound ways too.

Why am I telling you this?

I believe that you would rather have to claim that your son has a developmental disorder than a mental health one, so much so, that you are refusing to see how not being on medication would be as bad for him as not taking insulin would be bad for you.

I know there is a lot of stigma around mental health.  There was a lot of stigma around Asperger’s eleven years ago when we first thought that’s what he had and you were uncomfortable talking about it at first, but then became his advocate and educated people about it!

I know the stigma around mental health is much more deeply ingrained, but it’s going to take people like you and I to get past the discomfort and start talking about it and educating people.

If you don’t get insulin, you will die.  If our son doesn’t get dopamine, he wants to die.

Please help us.  I can send you articles to read, books, websites to confirm, etc.   I will give you every doctor’s name he ever met with and their phone number if you need to ask them questions, but our son needs to know that his dad accepts him for who he is…dopamine deficient and all.

I hope that for our son’s sake, your new bride will encourage you to accept the truth about his real diagnosis and help get you educated.

I know with you behind him, he can not only advocate for himself, but the many friends he has made that struggle with the same diagnosis.  You are always like the town mayor…people just listen to you!  Our son needs that in his corner.

I will take him to see the meds doctor again and discuss your concerns about this new medication.  I am happy to get a letter from her, for you, describing his diagnosis, recommended treatment and any concerns she has, if it would help you have a little more faith in the choices I’m making.  I’m still the insanely protective, researchaholic that I always been.  I never take his health for granted.

I know you do what you do out of love.  I know that you love him.  I know it’s hard to accept a mental health diagnosis, but it really comes down to the same chemistry as diabetes and thyroid disorders.  If your body has too little or too much, you are in a dangerous place.

Please, please, please, for 2016 find a way to accept him and his diagnosis so that you can help me spread the word and stop the stigma.

Sincerely,

his mom

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