I know it has been longer than forever since I posted on here. What can I say, life is busy and I’m distractable. In fact, I’m sure that the only reason I remembered this was here is because I’m supposed to be writing my dissertation and my subconscious is super amazing at finding excuses to procrastinate. All I know for certain is that I’ve been thinking for a while that I should post an update on where we are now. When I first started researching Fragile X I feel like these were the years that were hard to find information about….what happens when your child is in the early school years? What’s it like? What did I have to look forward to? So for those of you whose children are younger I can tell you that in my experience it’s busy. I know that’s not the best descriptor, but it’s what I’ve got. We have spent a lot of time trying different therapies, with different therapists these past few years. We’ve gone through several medication switches. We’ve got some things much more under control (sleep is WAY better, still not perfect but much much MUCH better). Other things are still a huge struggle (the hyperstimulation in public settings is still a major problem for us).
The last time I gave a real update on Elijah was shortly before he turned 4. He was in an inclusion pre-school and I had no idea what we were going to do for elementary school. In the interim, the administration at his preschool applied for and were granted a charter for Denver Public School’s and we’re now taken care of through the 5th grade. Elijah’s currently in 2nd grade, so I’ve got a few years before the next educational hurdle. He is now 8 years old. Developmentally he has made huge gains in expressive and receptive language, gross motor skills are fairly on par for his age and fine motor remains a major struggle for him. Socially he is becoming more interested in his peers, but still needs quite a bit of support to be successful and honestly if it weren’t for the fact that many of his classmates have been with him since he was 2 1/2, I’m not sure how well that situation would be going for us right now. He still has an amazing sense of humor, still responds pretty well to behavioral techniques and has recently begun to try to overcome some of his long-standing fears (vacuums, hair dryers, blenders….anything that makes a similar loud noise). While he has added several new foods to his diet, he also still has an extremely limited diet, still throws up when presented with foods he doesn’t like (which are nearly all of them…..he doesn’t even have to be the one eating them, watching someone else eat can be enough of a trigger at times). Additionally, we’ve added throwing up as a behavioral response to multiple other challenges….courtesy of a rough strep season he now gags every time he’s in the doctor’s office and often throws up as soon as the doctor walks in the room.
We are currently doing Occupational Therapy and he takes swim and ski lessons. We will soon be adding in an adaptive gymnastics lesson with an occupational therapist who works on fine and gross motor skills throughout the gymnastics lesson. I’m pretty excited about that one as it seems those sort of things are pretty hard to find out here. We’ve considered doing hippotherapy, but timing hasn’t worked out yet and we may be putting him in an ABA camp this summer, but we’re still exploring that idea and making sure they are comfortable with the adaptations required for working with Fragile X.
Overall, life has settled into a fairly predictable, more than a little busy, rhythm. Which is probably best all around as predictability makes for smooth times with Elijah. He has adapted very well to the addition of his baby brother and I’m really looking forward to watching their times together as Micah gets older and more interactive.
Approximately six years ago, I titled this blog and the subhead was “finding strength in the face of fragile x.” I’m not sure this is the most appropriate subtitle any longer. Early on strength was definitely what I felt like I needed, but that has shifted over the years. Honestly these days I spend more time asking and searching for wisdom, creativity and most of all patience….it sounds like a cliché, but the pure love that Elijah brings to this world makes strength a lot easier than I once imagined it would be.
That’s where we stand now and hopefully it won’t be another 4 years before I post an update here 🙂