Jonathan (age 20- deaf, autistic, OCD, nonverbal, high sensory needs, anxiety) and Ashley (17) are both my biological kids and Pearl (13) is Don’s biological daughter.
Don and I have been married for 3 years. To say the least, the last 3 years have been a learning experience and at times a struggle. Due to Jonathan needing a lot of care, we often find it hard to carve out time as a couple and even more so with the girls. Our activities are often dictated by Jonathan’s needs and mood. This often makes us feel isolated. I often stay home with him and allow the rest of the family to do things just because it’s easier and we don’t have to worry about Jonathan getting overstimulated or having a meltdown which results in banging his head and or pinching. I often get a lot of mom guilt on this because I do miss out with the girls but I also want them to have some normalcy too. It’s a hard balance some times.
Jonathan can only have certain people care for him because he is unique and has unique needs. My mom is my only option right now for help yet she is in her 70s and it’s been difficult for her at times due to Jonathan’s size. Respite care is needed so much for families with special kiddos.
In a life like ours, our marriage often gets set on the side burner because we always are tending to the kids and it can be very isolating. Some times it’s hard to switch that hat to wife, etc., when your waking hours outside of school are caring for Jonathan.
Jonathan does have the opportunity to attend school until he is 26 which is much needed. He thrives in a structured environment and while home he does not have that as much. I work a full time job as a social worker and my husband is a mechanic. Luckily he is an early morning shift so he is able to be home for after school routines and activities.
The last year has been very tricky due to Covid and you can only imagine how lockdowns and lack of structure and consistency affected all of us. Our family is very busy and it is not easy all the time but we do our best with the tools that we have been given and keep striving to be the best we can be as individuals and as a family unit.
Favorite Respite Activities
My husband and I like to eat out, travel (within a 60 mile radius lol), movies and a little off roading or house updating.