of a Mother with a high functioning adult son with autism
BY SARAH KENNEY
I wrote this for parents who may share some of their frustrations experienced with their special needs child when taking them on a vacation. I felt as though it was such a rough, long day and that it is important to share it with other parents so they feel they have company in their strife.
One day in my life... The following is a text I had written in July 2017, re-sent to me by my niece:
OMG I just got to the vacation destination with Patrick at 9:00 PM (distance from his apartment 2.5 hours) I left my place at 7:30 AM – A very loooong day for sure... I drove an hour to "himself" and his dog and I got to his apartment door...
(Yes, HIS apartment and I thank you, National Louis University, The PACE Program in Evanston, Illinois, he is living in his own apartment. Although, I will never forget his voice as he called me crying for weeks from "college." The only way we were able to get him to go was to tell him he would be homeless otherwise. In order for him to stay there, we bribed him with a dog from the pet store where he was "working" through the PACE program. Eventually, he didn't want to come home on the weekends.)
He isn't answering the door while I pound on it and call his phone. Finally, after 30 minutes, he comes out with his dog... I said, "Why didn't you answer the door?" Then I noticed he had earphones on… Seriously, that was the start of the vacation…
"Paddy me boy," proceeds to tell me he can't go on the trip we planned for nine months…and he angrily replies, "It's because mom, you said we might change the day that we leave." (It was a big mistake to think out loud on my part). I answered, "That was two weeks ago, but I texted you and talked to you and said I am coming today and you didn't tell me that on the phone…"
Ugh so... he took a shower and I packed his suitcase: clothes, meds, toothbrush and fishing stuff and dog, of course… Then I dropped off Kringle pastry at the dentist's office because I promised him and he gives us discounts… Then I took Patrick to Joseph Banks Men's Store to get pants and a shirt… Of course, they don't carry his size (19″ neck & 33″ sleeve) Then I took Patrick's pants to the tailor to get pants shortened… Then I took him to Walgreens for his meds because he needed some refills. Oh, and let me add that he forgot to refill and bring his Metformin (for Type 2 diabetes) medication… Then the pharmacist stated that he has not filled it since( last) October (now July), and we had to transfer the prescription to a different Walgreens en route because we couldn't wait for it in Milwaukee. I said, "Patrick you can't not take your medicine and that's why you gained all that weight… ugh." "But my numbers are good," he then exclaimed that he doesn't like the medication because it gives him "the" diarrhea… UGH!
Then we took his dog to the vet for a shot so he can go to the dog kennel, Then I dropped off a check at a gal's house for a wedding gift, Then lunch – with a glass of red wine… Then a new doctor for my thyroid issues, en route to our destination… Then we walked into a place on the road to get Patrick's beard, mustache, hair trimmed because he looked like Grizzly Adams! Good Lord, this mom tried to calm down… Then dinner – a glass of red wine… at the restaurant where he orders the most expensive thing on the menu… Finally, we take the dog to the kennel. I just sat down at 10:00 pm. "Pooped," as dad used to say. "One day at a time," my mother used to say, and, "Tomorrow is another day."
Where was my mother when I needed her? Since 1963, she chose to sleep in a grave at Arlington National Cemetery… suicide… I'm not sure of the reason, but there are speculations…I wonder how different my life would be today if she had not gone into the deepest depths of depression… Maybe she would have been at the hospital for that horrific labor and delivery of my first child, so he might have been spared his brain damage from lack of oxygen and be able to pay taxes and have a wife and child of his own. Maybe my overall life choices would be different or better or, at the very least, happier.
Luck and fate and destiny… So I was raised to be an optimist by my father who grew up in the Depression in an abandoned circus wagon until he was taken away and given to the nuns then joined the Marines to have his first pair of shoes without holes…
And so, optimism it is, and this mom will calm down as she has no choice in her mind so… to mimic a little Lesley Gore circa 1963… Sunshine, lollipops and rainbows… just like the double rainbow I discovered while traveling in Dingle, Ireland… and the good luck that those rainbows are supposed to deliver as I sit on hold with Social Security Medicaid and Medicare and try to sort out the government's mess with my son's special needs status. But the good news is that my boy is happy in his own little world.
A MOTHER WONDERS: "One day at a time," my mother used to say, and, "Tomorrow is another day." Where was my mother when I needed her? I wonder how different my life would be today if she had not gone into the deepest depths of depression. Maybe my overall life choices would be different or better or, at the very least, happier.
ABOUT THE AUTHOR:
Sarah Kenney Is a retired speech-language pathologist (35 years in a school district) and a mother of an adult son with special needs.