With most every other post I have ever done about how things feel from my side, I add some sort of statement within that post acknowledging that I completely understand and do not judge people for feeling that the challenges our son has are outside their comfort levels when it comes to personally helping out or being involved with his care. That’s exactly why in his early years, I wasn’t directly approaching anyone for help, and I wasn’t surprised when most people who initially offered help backed out once they were given more detailed information about what specifically was going on with him. Truly I have always supported that, because it’s better for everyone involved if Tony’s not left in the care of someone who doesn’t feel comfortable providing the support he might need.

I didn’t provide that kind of statement last week. I still do and always will feel that way, but I also think it’s important for people to realize that when someone is facing the kinds of things we have been, and doesn’t really have a lot of support for certain things, they still need the people around them to validate how dark and isolating that can feel. How desperate things can feel. Being understanding of other people who chose not to help didn’t decrease how brutal any of this was on me or what I was going through as we were helping our son through all of this. I have been pushed far past the point of anything I possibly ever thought I could endure over the past several years…and still I am here doing the best I can every day. For me it was enough to say that at many points it felt like I was going through my own private hell.

When the parents of a loved one with intensive behavioral challenges looks towards how they are going to coordinate the celebration of a couples only holiday, the first questions are about scheduling and resources. For us, Andy works in healthcare, and the new job he started this past month has him working well into the evening hours. He was already scheduled to work for Valentine’s day, but even if he weren’t we knew that his sweetheart of a sister Randi (who is very comfortable watching Tony) would understandably be doing things with her own spouse. We didn’t want to ask her for coverage the day before out of respect to her religious beliefs, and the rest of the days of the week had therapies scheduled until 630 or 7pm every single night. I never want to tell therapists to take a night off for a non-holiday night, because that penalizes them and shorts them pay for us not being able to celebrate the same day as everyone else.

The question some of you might have is “what about Respite?” For those of you who don’t know, respite is where the Division of Developmental Disabilities comes in and pays someone minimum wage to babysit an individual with developmental disabilities. We do have respite benefits…on paper anyways.

Emily was the only person who was ever willing to pick up any of our respite hours, but that was very short lived (a few months only, and ended a couple of years ago) because she needed to use those hours for higher paying opportunities. What we have found is probably not all that uncommon for families of an individual that is considered lower functioning: if someone getting paid minimum wage has the choice between babysitting our kid or babysitting a much higher functioning child, they are going with the higher functioning child every single time. Every. Single. Time. Tony has had ALTCS and DDD for more than six years now, and no other respite provider has ever been identified who would take on any of those hours.

Tony is working really hard. He’s starting to take no for an answer sometime without self-harming or trying to push his way towards what he wants. In fact, his incidence of self-harming is usually pretty low in general these days, and anyone who is watching him is instructed to give him any food or TV items he requests because this eliminates most reasons he reacts that way. But he’s not always cooperative when he’s asked to do something, and he usually doesn’t want to keep anything on but his underwear in home…and those last two items are more than enough for many people to loose interest in being his respite provider.

So, we had to look at the therapy meeting schedule next, because we saw that our next best opportunity because of Andy’s work schedule fell on the 15^th, but that a clinical supervision overlap meeting was scheduled. While I discussed us being able to step away for the last hour with the team (my participation was actively needed for the community safety portion), I also know plenty of things could disrupt that.

What we ended up doing was Valentine’s in pieces. For me, there is some sentimental value for Valentine’s day because Andy officially proposed to me on a Valentine’s day. But, if a couple only celebrates each another one day a year…are they really celebrating one another? Although the job Andy just left behind made it pretty hard for us to spend time together as a couple or a family, he and I still tried to do little things on a regular basis to show the other person that they are valued. So, I never really need a big production on Valentine’s day, but I do want us to be able to have some time together alone.

Small things can be enough for me, but even those had to be pieced out. We found some of that alone time on Saturday evening after Tony was tucked in, half an hour of it on the balcony eating chocolate dipped strawberries and dancing on Sunday evening that we paid Hannah to cover for (she’s approaching 16, she’s very comfortable assisting her brother as long as we are in-home to help her out if anything happens), and then our half an hour together during the last part of Tuesday’s therapy session (the time community safety took that day decreased the amount of available time).

That set up isn’t considered traditional for this holiday. Families such as ours often can’t be. For me, being able to find happiness in that came down to letting go of my expectations for what Valentine’s day (or any holiday for that matter) should look like. And that’s what I recommend to other families who haven’t already arrived at that place: realigning or eliminating your expectations altogether will help more than anything else. Other supports may not be available. We personally may not ever be able to leave the house for a restaurant or to go dancing on that holiday ever again. So we find different ways to help each other feel appreciated and loved, and we do what we can quietly at home. Valentine’s day might be broken into pieces, but it still felt heavenly for us to have those little bits of time together.