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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Hi Theresa,
It sounds like your daughter has a very happy life. Your concerns for her future are valid, though. Have you set up a special needs trust for her? If not, that is worth looking into. The topic is discussed in detail in my book, Different Dream Parenting. If you click on “Buy the Book,” you’ll get to the Amazon link for purchasing. Or it’s available or can be ordered from bookstores.
Best wishes,
Jolene
I know how you all feel. I have a 24 daughter who is moderate mentally handicapped. To help and protect her, I have interdicted her. She is very immature, and I love her more every day. People do not realize how much care special people need. She loves to listen to music and play with her dogs. She goes to a special place every week day from 8 till 1. They do work sheets, color, play games, and watch movies. She loves being around other special people. I worry every day about her future, because this is all she can do.
Tammy, I have a lot of admiration for parents that deal with developmentally delayed children of any capacity. It truly is a sacrifice of love to be willing to put your own life on hold in order to help them gain the skills necessary to function at their highest level.
I too understand your worry. We have had to start from scratch a couple times with our daughter that suffers with emotional issues showing her the basics of functioning in the outside world and helping her have the desire to want to go forward.
I commend you for your commitment to your daughter and know that your efforts will be rewarded by each small step of independence she takes because of your guidance and love.
Kathy, Thanks for sharing your story. It helps those of us with a young adult with special needs to know there are others out there just like us. No one knows the worry, stress, joy, struggles, and advocating that goes along with this challenge we have been given.
My daughter is 19. She is mildly developmentally delayed with PDD-NOS, anxiety, ADHD, etc. I worry about her constantly since she has immature social skills and is a target for predators or someone to take advantage of her. This requires me to micromanage her life and I cannot have a career again (right now) until she’s settled in a SAFE job. There are tons of struggles for an education and public transportation.
We are all walking that special path in different ways.
Tammy
Debbie, thanks for sharing your story with us. I too would be lost without my faith and knowing that whatever we deal with in life, we are never alone because God’s loving arms are gently guiding us toward peace and hope.
I know exactly how you feel, Kathy. My son, who is now 22, started life out as a normal baby, normal toddler, and an active, but normal little boy, until the age of 8 when we discovered that he was legally blind, and was progressively losing more vision as time went by. Just when we thought we had adjusted to the diagnosis of his vision loss, at age 12, he had a seizure for no reason. Thinking it was just a one-time fluke that would never happen again, as he had learned Braille and cane travel fairly quickly, we planned on him growing up to be an independent blind person, as so many of them are. However, 10 months later, he had another seizure, followed by 4 more over the next year. Finally, a doctor started him on anti-seizure medication, which stopped the seizures, but had several undesirable side effects, such as short-term memory loss, sleepiness, and weight gain. The seizures were being controlled, though, so we stuck to our goal of his ultimate graduation from the public school and into the workforce. Unfortunately, we were noticing at school and at home that he was losing a large part of his cognitive abilities over time, more memory loss, and disorientation, confusion, and speech impairment that kept getting worse each year. Deciding that it must be due to his progressive loss of vision, after high school graduation, we sent him to a nearby School for the Blind to take part in an Independent Living Course for the next 2 years, where he lived in the dorms during the week and worked daily on job skills, home skills, orientation & mobility, Braille, computer skills, speech, anything that would help him be as independent as possible in life outside of school. He came home on weekends and summer vacation, but instead of becoming more adept at all of these things, he was losing ground. Finally, we have decided that the violent seizures he had over those 2 years from age 12 to 14, and even a couple of milder ones since then, must have damaged a part of his brain that controls these abilities. He was diagnosed as mildly mentally impaired at age 16, and now lives at home with us and attends a sheltered workshop for adults with disabilities in a nearby town. They send a van to pick him up and bring him home 4 days per week. He enjoys it, and seems to be happy most of the time, but he had dreams of being so much more, and he asks me why he can’t be a mechanic like his dad or a farmer like his grandpa. He stays in his room a lot and listens to movies or music most of the time. No friends call or come to take him with them to a movie. The friends he had when he was younger shunned him as he became more disabled. He was such a bright, active, boy with an outgoing personality and lots of friends in elementary school. He ran in youth track meets, played t-ball, took part in youth wrestling & even played football in junior high, and the potential to be a great athlete could be seen by everyone. It has been a long, rocky road full of so many disappointments for us as parents, and a sad, lonely life for my son so much of the time. If it were not for my faith in God and His plans to make something good come out of every disappointment, I would still be in the pit of depression. I love my son the way he is, but sometimes I still shed a tear for the man he might have been. My full-time job now is taking care of him, and I will do it to the best of my ability as long as I can. God bless you for your story. It helps to know that others understand. Thanks for your article!