Isaac was diagnosed with autism when he was 2 years old. He is now almost 10, non-verbal, and he has also been diagnosed with ADHD, epilepsy, and has severe sensory and sleep difficulties. While he has made tremendous progress, we still have day to day struggles with communication and his safety. He has no concept of danger, and so we have had to put multiple locks on our doors, along with an alarm system. Because of his lack of understanding when it comes to danger, we very rarely stay anywhere other than our house, or let him stay overnight anywhere. We don’t visit a lot of places other than church, school, and the grocery store unless we have too, because he has a tendency to try and run from us. He’s getting bigger, and it’s hard for us to have a successful outing.
His sleep issues are hard on us because he has to take medicine to go to sleep, but he won’t always stay asleep. Many nights he is up at 3 or 4 in the morning and ready for the day. This takes a toll on us and his brother as well.
Respite for us would be a dream. We occasionally get a night out, but it’s few and far between. All of our family members live over 2 hours away, and are not able to help us without plenty of notice in advance. One set of Isaac’s grandparents own a restaurant in Dover, TN, and so it is hard for them to be able to get away and his other set of grandparents are also over 2 hours away, and visiting is hard on everyone because of the drive.
Because of Isaac’s limitations, it has affected our work lives as well. His dad works during the weekdays, and I work on the weekends. This is because we don’t have anyone that is able to stay with him during these times other than ourselves. We aren’t able to afford any sort of daycare and even then, we would have to do extensive research on someone to trust them enough to stay with our non-verbal child.
We don’t get a lot of family time because we work opposite shifts, but it’s what works best in Isaac’s case, and that’s what matters for us. However, if we were to have one or two nights a month that we were able to get out for even a few hours, it would be amazing for us. Mentally and physically. To not have to worry about dinner for one night, or that he is with someone trained to know how to interact and communicate with him would be wonderful. He is a wonderful child and so sweet, but we just don’t have the kind of support we need available. We are so thankful for this opportunity to be working with The Lucas Project! Thank you so much!
Favorite Respite Activities
We love to go out to dinner and play arcade games! Or go to a bookstore, you can never have too many books 😀