Day 16: Advocacy
Daniel 12:3 Those who are [spiritually] wise will shine brightly like the brightness of the expanse of heaven, and those who lead many to righteousness, [will shine] like the stars forever and ever.
Isaiah 30: 20-21, 23-27,29-31 And though the Lord gives you the bread of adversity and the water of affliction, yet your teachers will not be moved into a corner anymore. But your eyes shall see your teachers. Your ears shall hear a word behind you, saying “This is the way, walk in it,” whenever you turn to the right hand or whenever you turn to the left. Then He will give the rain for your seed with which you sow the ground, and bread of the increase of the earth; It will be fat and plentiful. In that day your cattle will feed in large pastures. Likewise the oxen and the young donkeys that work the ground will eat cured fodder, which has been winnowed with the shovel and fan. There will be on every high mountain and on every high hill rivers and streams of waters, in the day of the great slaughter, when the towers fall. Moreover the light of the moon will be as the light of the sun, and the light of the sun will be sevenfold, As the light of seven days, In the day that the Lord binds up the bruise of His people and heals the stroke of their wound. You shall have a song as in the night when a holy festival is kept, and gladness of heart as when one goes with a flute, to come into the mountain of the Lord, to the Mighty One of Israel. The Lord will cause His glorious voice to be heard, and show the descent of His arm, with the indignation of His anger and the flame of a devouring fire, with scattering, tempest, and hailstones. For through the voice of the Lord Assyria will be beaten down, as He strikes with the rod.
Happy Sixteenth Day of Thanks Everyone!
Today, I give thanks for a theme that is so near and dear to my heart--advocacy. As a single mom of a child with special needs, advocacy for Delilah Christina has become an inherent full time job. The ability to advocate for Delilah has made me so wise and comes as second nature. I'm sure you'd be surprised at how many people get paid to do jobs that they don't actually do or spend time trying to cheat a person with disabilities. I'm also sure you'd be frustrated to know how many people get paid to do jobs so poorly and without any level of accountability.
When I say that advocacy has been an inherent, full-time job for my daughter, I am not lying. In every area of her life since the time she was a toddler, I've had to advocate for her. I had to sit in mediation to advocate for her to be in the best schools for her needs. Because Lilah regressed into autism and has been minimally verbal for several years, I had to advocate for speech therapy and occupational therapy. I had to fight the DOE to purchase her the most suitable speech device; since it was not an ipad, they didn't want to purchase the device. I had to advocate and fight for her to get a medical waiver to access services from the Office of Pupil with Developmental Disabilities. If you only knew how many times I have had to fight for her to stay in programs because they didn't want to serve her "type" of autism or because she "couldn't verbally communicate" like the other children.
You do not want to hear my tumultuous story with the Social Security Office. That story is a 14 year saga of Social Security denying her benefits, turning her off of benefits, and still currently robbing her of benefits (they claim to have overpaid her but after 3 years they have yet to submit paperwork and do the official paperwork of her appeal. Every time I requested to speak to or see a supervisor or submitted an appeal, it has been ignored.) Due to Lilah's epilepsy, I had to advocate for her a nurse to be on her school bus and in school with her throughout the day. Each day, I'm advocating for Lilah's nursing agency to provide a nurse for her. We have gone up to 4 months of Lilah not being able to go to school in-person because the DOE could not provide a nurse for her. Every official and administrative office in this city was aware of my daughter's school nursing issue. I can think of so many other areas that require advocacy for Lilahs' needs but I won't get you worked up on account of the upsetting details.
While it is quite tiresome to have this added responsibility of advocacy added to my list of daily tasks (which doesn't come with any financial compensation or respite), it is a necessary for Lilah's well-being. Although there are always many moving pieces to complete Lilah's well-being puzzle and more often then not there is a piece or pieces that don't come together, which shuts down the entire system, my love for Lilah and my desire to always see her with the best and a high quality of life compels me to fight.
I look at the twenty year old Delilah Christina now, in amazement. When she was first diagnosed with autism, the evaluators told me that she was mentally retarded, which I knew wasn't true. Her doctors told me that she would probably never speak and would continue having extreme sensory issues. I was told that there were so many things that she would never be able to do. I told all the naysayers that they didn't know who her mother and our God was. After every advocacy "fight" there was a new service she received. I watched Lilah participate in gymnastics for six years and learn all those routines like her peers. I watched her sing, learn to play piano, and speak words that they said she would never speak. I watched her to amazing pictures to tell a story and express her needs/desires. I watched her become a fashion diva, creating her own look, autonomy and independence. Now, I see her learning vocational skills to transition into adulthood and possibly become her own entrepreneur.
My advocacy for Delilah's wellbeing doesn't stop just because she's reached the numerical age of adulthood. Until she is completely healed of autism, my advocacy "job" will be active, ensuring that Lilah has access to the right services and programs to suit her needs.
Today as we give thanks for advocacy, I ask that you consider donating gently used and new clothing and shoes of all sizes, sheets, pillows, suitcase and other items you may have to the many migrant families in shelters within NYC or donate to $southbronxmutualaid on cashapp or @tinyurl.com/moradagofundme
Have a Great Day of Thanks!