Raising early intervention and autism awareness through our amazing journey

Attorney and case update:

I have had the pleasure of speaking with Jonathan Martinis, who is a disability attorney in Washington DC.  This kind soul has spent time emailing and even speaking to me on the phone.  Of course he had no reason to speak with me if he didn’t want to; I never gave him anything for his time, nor did he ever ask.  He only wanted to help, and I will be forever grateful.  It’s people like Mr. Martinis who change lives.  For example, he represented Jenny Hatch a few years ago.  You may have heard the name since it was a nationally know case.  The case involved a young woman with Down’s Syndrome who went through horrible experiences in and out of group homes because she was under guardianship of her mother who had the right to place her there even against Jenny’s will.  Jenny had her rights stripped in the group home.  She pleaded to live with her employers who wanted to take her in, but she was not heard.  That is until Mr. Martinis stepped in.  It was a very ugly and painful year but finally they prevailed, with Jenny being the first person with a disability who now has the right to supported-decision making instead of a guardianship.  She is now able to live with the family she loves, continue the job she chooses, participate in her church and in community projects, and to simply enjoy life with the rights she deserves.  With Mr. Martinis being an extremely recognized attorney, I never thought I would hear back after contacting him, but I did.  He is unable to represent me due to his location, but he provided me with the names of people who could.  Even though the Disability Law Center here in Richmond, Virginia doesn’t take many cases, I do think we have a good chance.  I am in the process of providing information to the Law Center, but I do believe after they hear all of the information and evidence we have, they will see that this is a great case to fight.  I ask for prayers that we are able to be represented to fight for not only our son, but for the rights for many who have been wrongfully denied support.

An update on the appeal:

We have submitted the appeal letter.  We hand-delivered the appeal letter and had it stamped and signed proving it was received.  DMAS states that the appeal letter needs to have a specific and detailed description of the reason for appealing.  This is a lie.  This is one more tactic they use to gain information so they can plan their defense in hopes to uphold the denial.  You do not need to give a reason why.  Additionally, they typically schedule their appeals to be held by phone.  You have the right to have a face-to-face hearing which is to your benefit.  In our letter, we simply stated:

“We would like to appeal the findings within the attached letter.  We request that this appeal be heard face-to-face (in person).”

Then we signed it and attached the denial letter.  That’s all they need and all they deserve.  You on the other hand deserve TO be heard fully and you have the best chance of being heard in person and without giving them anything to argue.

An update on my neurology issues:

I stated in a previous blog entry that I have epilepsy.  I wrote that I recently visited my neurologist and explained serious and potentially dangerous health symptoms: blurred vision, migraines, cognitive and processing issues, feeling zapped of energy and sleepy during the day, as well as twitching (jerks) during the day which is a sign of seizure activity.  He stated I was suffering from “chronic sleep deprivation”  due to lack of sleep caused by our son’s autism related sleep disturbances.  He also wanted to check my seizure medication levels.  Those levels came back today.  The blood work showed my levels were low and that my medication must be increased.  The chronic sleep deprivation along with my low medication levels have more than likely caused seizure activity, which is why I have been experiencing these symptoms.  It’s not a simple fix with this medication because the increase has to be very gradual and takes a month or more to reach the correct dose.  If it’s not done this way it can cause major heart problems and potentially lead to a deadly rash.  Pretty comforting, right?  LOL.

Enjoying Life!:

We have to have a sense of humor with all that we are going through.  I mean face it, we can’t change it and it will do us no good at all to have a pity party or to be angry that we have been given a bad hand in this card game.  Not only are we not having a pity party, but our circumstances have brought my husband and I closer (with God’s saving grace and love!) and we are enjoying the small things in life more than ever before.  With the very little free time we have, my husband and I have taken up music..again.  He is teaching me how to play the guitar and in between my lessons, he plays the guitar while I sing.  Music has always been a huge part of my life, but sadly when things got tough I neglected it completely; even stopped listening to music?!  Life is too short to neglect anything you love!  We are living life to the best of our ability with our current circumstances, and for now, that is perfectly fine with me.

Again, thank you so much for reading.  I do hope I reach people and help someone along the way.  Until next time..  🙂


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