What do you do when you aren’t sure?
We fought hard for Rowenna to repeat 4K and to have a half day of school. At the time, we were optimistic about the trajectory of therapy and felt like we (well, mostly me) had the stamina for another year of what feels like house arrest.
There have been many excellent things about our in home therapy. There is no doubt in my mind that her team is dedicated to her well being and growth. She has started to maintain eye contact, point and gesture, engage us and others in play, and uses her PECS communication book like a pro.
But more and more, the challenges of maintaining this pace of therapy have weighed down my family. Rowenna still prefers us to therapy, so if we are within sight or earshot, she disengages and comes to us. We participate to some extent, but it is not feasible for us to lock in for every hour of therapy. We have spent many hours quite literally locked in rooms upstairs so Rowenna can have a distraction free zone. We tried many techniques with Ro in hopes we could move more freely around the house, but she is simply not ready for that skill set at this time. And frankly, there is something heart breaking about denying your child access to her own mother, when many times it wasn’t a stall tactic but a genuine desire to see me.
Afton is growing and blossoming. She wants and deserves freedom to move about the house and to play with her big sister. She, too, is welcome to participate in therapy, but it is not feasible for her to participate the entire time. We have spent a lot of time shepherding her away from her beloved sister. It feels terribly wrong to do so.
It started to feel unnatural to have this many people coming and going from our home. It felt strange for this vibrant, thriving 5 year old girl to spend the majority of her day at home, surrounded by adults instead of children. We started to feel like we were a Special Needs Family, rather than a family who has a member with special needs. This is not in line with our beliefs for Rowenna or our goals for the family.
Add to all of that some major staffing issues that resulted in our home basically being a revolving door all summer, and we came to a crossroads.
Down one path was therapy, and all the wonderful benefits but increasing challenges that come with it. Down the other was a full day of school, in a district that utterly failed our child but with a new team that is so on the ball I can hardly believe our good fortune. I have had many a conversation and email correspondence with this new team, though, and I am cautiously hopeful.
Both paths are scary, but in different ways. Both are exciting, but in different ways. Continuing therapy meant another year or so of few kids and lots of adults, a lot of time stuck in the house, and an ever-changing team of providers, but the possibility for Rowenna’s skills to continue growing through methods we have seen succeed. A full day of school meant ending the therapy we know has helped (scary to give that up!), but allowing Rowenna a more natural day of peers and play and being out of the house. Stimulation. Learning. Growth. Room to breathe.
We made a decision, but truth be told we still aren’t sure it was the right one.
How do you give up a known for an unknown? How do you give up something you know is working to some extent for something you hope will also help? How do you, as a parent, allow your personal desires to affect what is best for your child? Should your desire to have just one afternoon without another adult in the house or the ability to move freely around the house outweigh your child’s need for support?
That is where I get stuck – that this decision has anything to do with myself or hubby or even Afton. This is the first time we are purposefully choosing something based partially on what is best for the family unit, rather than just what is best for Rowenna.
And it is scary because it is so very easy to lean back on “but it’s best for Ro. I never want to look back and say I didn’t try.” It is easy to let the disability be the reason and the excuse for everything. And it is painful to admit that I have made many a decision in the last 5 years by letting disability take the wheel.
This is a decision we have to own, and it has to be made partially on hope (that school will truly benefit Ro) and faith (that the school knows what they are doing this time around). In general, I like to make decisions based on facts and reason. And while those two things are also at play here, there is a lot more hope involved than I generally like.
For the first time, we are fully going against the general recommendation (all the ABA therapy all the time!) and doing what is right for all of us. Giving Ro a more natural schedule, Afton a chance to play and to be, hubby and I an opportunity to be a full family again.
So it’s something brand new for all of us. No more therapy, freedom in our own home and schedule, and a full day of school for Ro.
What do you do when you aren’t sure? I’m putting this out there for all my fellow parents who doubt and worry and wonder. I guess what my family is doing this time around is to jump and to hope.
She’s got this, I know it. Now I just have to get my head and heart to catch up.