My daughter

My daughter is now learning event planning and setting her goals!
I am the mother of a extraordinary and inspirational young woman.  She has a diagnosis that includes an intractable seizure disorder/epilepsy, cerebella atrophy and a mitochondrial disorder. Her condition  limits her fine and gross motor abilities, impacts her speech and her ability to ambulate without assistance. My daughter’s health has declined considerably over the last few years with monthly health crisis that further weaken her condition as her seizures increase anywhere from 12 to 15 a day to in extreme cases  every 10 minutes. These crisis can leave her bedridden and unable to speak, sit up eat or drink or enjoy one of her favorite pastimes… coloring.  She missed over half of her last year in high school unable to say goodbye to friends and staff she had grown so fond of over the years.

 

Self Directed Services has given her the opportunity to be an active participant in her life. We are able to work around her condition in spite the many health crisis and limitations imposed upon her. Primarily,  Her day program supports a goal to give support to the disabled community through her art, baking and creative writing.  She is also currently learning event planning to host events where the disabled and non-disabled community come together to share and learn through “making“.  Be it jewelry, spa products, baking, robots, etc.  She wants to raise funds through donations from the events that will go towards supporting a specific need of a pre-selected individual with disabilities.  Her first upcoming event will be a spa party.  This is a lot of work and I absorb a lot of the costs but its worth it.  She is worth it.  I look forward to its overall success.

 

 

As a result, with the slightest hint of a breakthrough and or in a middle of a crisis she now ask to get up and go to her garden, bake, attend horse therapy (even if it means only brushing and talking to her horse Brandy).  She is now more vocal, conversant, confident and feels that life has many possibilities available to her now.  She developed questions and conducted  an interview before choosing staff to work with her this summer.  She initiated a conversation with a state representative sharing with him her goals and desires.  She is laughing and joking and all that see her notice her progress.

 

 

Working with my daughter and having the flexibility to adjust her day according to her needs and abilities allows for her to still be engaged. Whether she is bedridden or in that in between state I read She now feels that her health challenges are more like momentary pauses  vs. fixed and continuous blockages to a meaningful life because she has people who care enough to invest time and energy to helping her realize her goals and dreams in spite of and through her challenges.