Trying to describe what my life is like at home is difficult. On one end, I have a normal 18-year-old who takes care of himself, and does more on his own than I care for. He doesn’t want to spend too much time with his mom, and is your “typical” teenager. I love seeing his sporting events, and spending time with him when he allows it. On the other end, I have Phoebe. Phoebe is… Phoebe. She is never predictable, and is the only person who has ever made me scream at the top of my lungs in anger. This child/adult has never had one year that didn’t have some sort of bump in the road. Not one autism/EI strategy in school has worked for her (at least not for long). She figures it out and changes it up. While we know it’s unintentional, she still does it. Whatever gets her the most attention is what works for her. Everything is about attention for Phoebe. EVERYTHING. And, she has been getting my undivided attention for 21 years, 24/7, 365 (give or take a day).

Phoebe has some traits of a typical 21-year-old. A 21-year-old who wants constant fun and attention. I see glimpses now and again. “What can we do tonight mom?” (at 9 p.m., while I’m in my pajamas) She asks about dating, and marriage, and when she can have a boyfriend. She wants friends to play with CONSTANTLY. Her brain is conflicted. She also has traits of a small child who needs help with nearly everything she does. Life skills are something we work hard at, but I don’t see many changes. She struggles with social appropriateness even though we have modeled and taught. Modeled and taught. It’s been 15 plus years of trying, and she still has the same instinctual reactions that take over (and I still have the same instinctual reactions to correct her).

That all being said, I’m 50-years-old. I’ve been doing this for 21 years. I have been going to IEP’s for 15 years. I’ve been doing mental health appointments for 10 years, driving her to everything, and finding babysitters for 21 years. 21 years. I see many parents of special needs children doing this their whole lives, but I can’t see how that is possible. My body is worn out. My mind is worn out. Quarantine and Covid has done a number on my small family being at home. I am trying to teach at a high level (that meets my standards), be a good mom, daughter, sister, and maintain a healthy lifestyle. Well, that just doesn’t happen. My time is spent taking care of Phoebe, so everything else gets put aside. Being someone’s caregiver (or mother) is not for the light hearted.

I’m worn out.