Parenting an adult child with special needs has been on the mind of new guest blogger, Kathy Guzzo. Today she shares what she's been learning.

Many of the parents who visit DifferentDream.com have young children with special needs. But some of them parent older children, and even adult children, who are living with a variety of conditions. So I’m glad to introduce to you a new guest blogger, Kathy Guzzo, who is learning about parenting a young adult with special needs. Or rather, she will introduce herself in today’s post.

Parenting an Adult Child with Special Needs

Once Upon A Time…

Recently I was thinking back to when our youngest daughter, now 27, was 16.  She was a great student, involved in drama and musicals, played high school basketball, excelled at fast pitch softball, worked as a lifeguard, and hung out with friends. She wasn’t just living her life; she was experiencing it with real gusto.

Then as a junior in high school she started getting sick a lot. Throughout the next two years she was diagnosed repeatedly with mononucleosis, strep throat and even had her tonsils removed. She would be well for a couple weeks then the symptoms would return. She seemed to be home from school more days then she was able to attend. My mother’s instinct told me this was serious so I kept taking her to doctors, nursing her back to health, doing research and asking questions. All while helping her keep up with school and trying to keep us both upbeat.

The Answers Were Just the Beginning

For months I had wanted to take her to a university hospital out of state, but she kept fighting it because she didn’t want to miss more school. Finally, the summer after her high school graduation, we went to the university clinic where they immediately diagnosed her with lupus and with Epstein Barre Replication, meaning that her body replicated the mono virus instead of just allowing her to have it only once.

We were relieved to have a diagnosis thinking she would receive treatment and then could get on with her life as a young adult. Neither of us realized that more than 10 years later her life would be drastically different than what she had thought it would be. The minute she was diagnosed her life was altered forever. Although she graduated, her college experience was not at all what we had hoped and dreamed it would be. Just as her adult life is so different from what we had envisioned for her when she entered high school.

The Metamorphosis of a Mom Begins

Throughout this process I went from being the mom, of a teenager who drove her to appointments, continually talked with doctors, did research, dealt with insurance companies, fixed her favorite meals, talked with teachers, helped with homework, cried with and encouraged her to being the mom of a chronically ill adult child whose role is only to be available if she needs me. The adjustment has been a tough one.

Parenting an adult child with special needs is a difficult transition emotionally and practically, and in future posts I hope to share insights and encourage others that may be walking that path right now.

Thanks, Kathy

Thanks for sharing your story so transparently, Kathy. And readers, if have a topic you’d like Kathy to address, please leave a suggestion in the comment box. I’ll pass it along to her.

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