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Pot-Stirrer

Before and for a while after Diego was born, I did poetry, sang, and was very involved in advocating for battered women , children and people of color. 

I grew up very poor and with a less than stellar family dynamic. I believe a lot of this contributed to some awful things that happened to me and later to some poor decisions I made in my late teens and early 20’s. 

By the grace of God I was able to see that I had to push through these things and use the good sense God gave me .  God gave me the strength to work two jobs, go to school and raise Lyric alone and saved me from staying in an abusive relationship.  I knew that once I was in a place to do so I had to help others. 

I remember being 8 years-old hearing Michael Jackson’s Man in the Mirror and crying my eyes out when hearing it because of the reality that other people were suffering so bad.  I was an intense kid 🙂 , but that was and is my heart.

Lyric and I volunteered to help the homeless, did walks to end the genocide in Uganda, I volunteered to speak to at risk young women about self-esteem and self-worth, etc… 

About two years after Diego was born, it was very apparent that he needed me fulltime.  I stopped everything extra and I put a major part of  myself and my work on the back-burner.  This was a no brainer, my kids come first.  But in all honesty I miss writing poetry, I miss performing, I miss connecting with young people,  I miss helping my people so much.  Not doing these thing has left an incredible void.

I have been on full-time mama bear advocate status since Diego was diagnosed.  I am absolutely disgusted with how hard the various systems have been to navigate even with my extensive knowledge of medicine, insurance and basic knowledge of how things work and the english language.  We are led to believe that the “experts” are right, and that even though in our heart we know our children, that their “expertise” trumps ours.  

A  few weeks ago I was sitting and thinking about how hard this has been for me, then I started to think how much harder it may be for someone with no knowledge of how to navigate any system. How hard it must be for a parent here that can barely speak english let alone challenge “specialists” in a school district or medical facility. 

Then on Monday I read this article in the New York TImes  “Poor Children Likelier to Get Antipsychotics” , it broke my heart.  It shouldn’t surprise me though it is well document that people of color and disadvantaged people have always gotten inferior medical care. 

Poor children likely have parents with limited education and limited resources.  

I remember calling the 32 Psychologists on my provider list for UBH and just about half of them, without seeing my child, said they medicate first line and then might do therapy. 

I’m sorry you want to do what to my 4-year-old before you even do a full eval?? 

No thanks. 

The problem here is that I, unlike a lot of my people,have the confidence and the knowledge to open my mouth to say I disagree (even if it is feigned courage in the beginning).

This is Not OK!! 

Please know I am not anti-meds just anti-lazy professional!!  Diego may need meds eventually, but I will try everything else first.   There are so many  professionals prescribing an “easy fix”  with significant side effects rather than putting in the work and time needed, so many that want to write our children off because they may be “too much work” and a “drain on the system”, so many that take advantage of those that put so much trust in them.  I have seen it happen with my own two eyes in my line of work and have fought it each time, probably jeopardizing my job a couple of those times. 

I  am a “pot-stirrer” (Rickey says it’s just me being Puerto Rican..ha!)

I don’t care, folks can call me that all day, but I go home with a clear conscience and knowing that someone is better informed because they were given the correct information and able to make their own informed decision. 

I think that once I wrap my brain around Diego’s diagnosis and get somewhat of a hold on things, I am going to start a non-profit to target areas where people need help navigating the special needs system. To advocate, support and teach those who may be unable to advocate for themselves and their children due to lack of education,lack of resources, and/or a language barrier for no to little cost. 

This is simply an idea, a big one at that, but in my heart I am positive that it will become reality at some point.  All of our children, regardless of any circumstance deserve the best possible chance in life as early as possible. 

I hope this doesn’t come off as preachy, I am just so damn angry at the injustice to our babies. 

“It takes a village….”

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About sonidoinquieto

I hate writing bios *bio pending*

2 responses »

  1. P.S. I walked out of a number of doctor and counseling offices when “meds” where the first solution for Jonathan. Ultimately we decided upon them, but only after we learned to trust our providers.

    Reply
  2. You can take all that you are learning how with Diego and become an advocate for others in the future. I’m convinced that Jonathan was given to us because God wanted people to bring His light into the world of special needs, which is often dark and without hope.

    This is one of the reasons that I blog about Jonathan’s autism, so that I can build relationships to share the source of my hope…if given the opportunity.

    Reply

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