Written by: Donna Maheady, EdD, APRN
Lauren embraces life head-on in spite of challenges related to HNRNPU, a genetic mutation with autism related characteristics, epilepsy, mental retardation, limited speech, and facial features commonly found in others with the same mutation.
Looking back over 34 years, the time flew by— filled with joy and laughter, celebrations of every achievement, along with tears, and meltdowns. Like so many other parents, medical appointments, countless therapies, meetings and advocacy efforts with the school system, service providers, and insurance companies became routine.
Lauren now lives in supported living in her own apartment in Jupiter with 24/hour a day supports. Like most mothers, I struggled with the move and letting go. After a few years of her living on her own, we finally found good, responsible loving staff, and I started to breathe easier. I no longer needed to check the cameras every hour…..I could now actually go a few hours without checking!
Then bang the Covid pandemic happened! My husband and I are in our 70s so we self-quarantined. Not seeing Lauren was and continues to be heart breaking and just so painful at times. In the past year, we have only seen Lauren 3 times. Nevertheless, Lauren has coped better than we could have dreamed possible!
And she grew….
Lauren learned to wear a mask and became more adept at FaceTime and using Facebook Portal. Lauren has learned to do more online activities (bell choir, dance, yoga, Amigos church group, and Spanish class). Her language skills have improved and she has developed greater independence in all activities of daily living. With her supported living coach, Jackie Kingston (better known as founder of Sea Turtle Adventures iCare program), Lauren had a physical and blood draw, teeth cleaned twice, allergy skin testing (60 skin pricks), a haircut and monthly pedicures. She does her grocery shopping at Publix. While pushing her cart along, Lauren knows exactly, where everything is and what she needs to buy.
And she grew…
Slowly, outdoor activities opened up. Lauren began doing regular beach cleanups with Sea Turtle Adventures iCare group and even went to her first drive-in movie! She started swimming with the “Just Keep Swimming” program, sponsored by the Sea Turtle Adventures iCare program and Kelli Alvord, owner of Sunshine Swim School. Lauren and her boyfriend decorated holiday trees on Clematis with Sandra Raffaelli and a group from Azul for Better Living.
When the Covid vaccine was available to Lauren, I admit to having mixed feelings about her getting it. What about side effects? Fever? Seizures? A meltdown at the clinic site? On the other hand, how could I live with myself if she did not get the vaccine? I am a nurse practitioner and science guides my practice. After much soul searching, my training kicked in and I agreed to her getting the shot.
And she grew……
The appointment day arrived and I literally followed the hands on the clock… tick tock…they must be there by now? Tick tock. I finally got the text 15 minutes after the appointment time. Lauren got the Covid vaccine and did great! A sore, red arm followed with a couple of “off” days—small price in the big picture.
My longing for the “good old days” eating pizza together at Carmines continues. However, for the meantime I am content checking off the days on the calendar eager to get Lauren’s injection #2 in my rear view mirror.
Did I want a pandemic to occur in order for Lauren to gain greater independence? Of course not, but looking back being forced to let go, has had many rewards and for that I am grateful!
Donna Maheady, EdD, APRN is the Co-founder of ExceptionalEnsembell.org and is also a Blogger at: autismolympics.blogspot.com