To say I wish it wasn’t this way would be true. I would not have chosen this path for my daughter, myself, or for our family. That being said, the special needs that Kimberly has are real and they aren’t going anywhere. There have certainly been times when I have decided not to attend an event, or go out to run errands with her as it was simply more than I had the energy for but, that is often not an option. Life demands we do the things we need to do and bringing Kimberly along is many times, required. More than that though, I WANT her to have experiences and be exposed to whatever she/we can tolerate. There really aren’t many places, at this point, that I haven’t been with her. The first few years of her life, I strapped on my Ergo carrier and we rolled. As she got older/bigger, the stroller or my hip were our mode of transport. We are aging/sizing out of these options and it is getting a little more complicated. Along with the issue of lugging her 60 lbs around, is that of cooperation. This has become significantly more challenging in the last few years. Either her ability to manage stressful, chaotic, or frustrating situations has diminished even more, or her awareness has increased and therefore, the reactions are more frequent and obvious. There are the harsh things she says, the raising of her hand to strike me or actually hitting other things, anger that devolves into tears, etc. I don’t mention these things to suggest that she is difficult most of the time. That is not the case at all. She is usually curious, silly, funny, and predictable in her wants and interests. I am finding though, that adapting to her behaviors as they evolve, is very much a moving target. And, I don’t always hit the mark.
All this is to say, we are headed towards, or maybe are already in, a significantly new phase. Puberty for a neuro-typical child is bad enough…throw special needs into the mix and let’s just say I am not sure where to even start. Kimberly turns 12 in a few weeks. The clock is ticking, and just like it did for her older sister (and all young people), her body is keeping time. The endocrinologist alluded to this at our visit last year. We see him to monitor her growth and overall hormone levels. I think I had been repressing the inevitable so effectively that it was almost a shock to me when he suggested we may be seeing signs of puberty sooner than later with her. Seriously, I thought…not on top of everything else!?!
As with most things when it comes to raising a special needs child, it is/will continue to be 10, 100, 1000x harder…and people will say what they always say…”I don’t know how you do it”. And, I will think to myself, or maybe even say out loud the most obvious answer of all, ” I do not have a choice”. I love my daughter, and yet I can openly admit that I mourn the opportunity to just roll right on through this as so many others do. Ticking off the milestones, celebrating the process, marveling in their movement towards being all grown up.
I’ll keep on though, as we must, adapting to the changes and trying to figure it out along the way. As I often do as well, I seek outside resources and rely on advice of those that have gone before me to navigate this strange, new path, until it becomes our new normal. Unfortunately, these resources are not always readily available and so many parents in our shoes do not feel comfortable sharing their own struggles and decisions. I know how they feel, it is scary to make public the decisions we make, as so often we have no idea if they are the right ones or not. There is no book for this, no blueprint. That is why I feel compelled to write these posts….maybe someone “out there” will feel support, comfort, and/or find answers to the myriad of struggles that we face. I certainly hope so XO