Last week, the kiddos and I visited my parents in Utah. I felt like we came in like a tornado and they were so patient and kind and we loved our time with them.
The reason we came was for appointments.
I don’t think I have shared much since our initial diagnosis what has been happening so I will give a little recap. It has been helpful in our home because I feel more understanding of why things are the way they are – but it’s still hard.
We have been trying to find a medication to help with Jacob’s ADHD. There is some overlap with autism and ADHD behavior and so we would like to get the ADHD under control so that we can help fine tune what needs are coming from autism. Does that make sense?
This hasn’t been easy. We are on Jacob’s third different medication and are still looking for a good fit. Mostly, nothing has had any effect yet.
I go through waves of wanting to learn more and waves when I need to put everything away because it is just too overwhelming. Maybe that’s not right, but it’s where I am at right now.
It’s hard because there is a reason autism is called a spectrum disorder. No child with autism is the same as another and I am finding that hard in ways. Because each child is so unique and so its hard to feel like someone really knows what you are experiencing. And everyone’s story seems so different and has different things that have worked and not worked so it just feels like a whole lot of trial and error – and I know we have barely scratched the surface.
The biggest thing I am feeling is a sense of urgency. I feel like we lost a lot of time {and I can’t really think about it too much because it just makes me frustrated} but I don’t want to waste any more. Everything says that the sooner you get care and therapy the more successful children are. And so I feel pressure to get things underway as soon as possible.
We have experienced blessings with this. A critical part in getting care is increased testing. The specialist that we saw was able to diagnosis Jacob but we needed to get additional testing to get it “official” {there is more lingo to that, but that’s pretty much my understanding}.
Normally, the wait time to get into these testing centers is months out, but while I was on the phone scheduling the appointment, one of the other receptionist had a cancellation and so we were able to take their spot! We were able to get in two weeks later!
This was the reason for our visit.
Jacob had appointments for two days. I don’t really know exactly what was happening, but Jacob seemed to really enjoy it and was so excited to bring a sack lunch one day. He basically just played games and did some cooperative play to help zero in on his specific needs. We have a “results meeting” scheduled in a couple weeks.
Also, let me just say, the amount of paperwork required is INSANE. Seriously, CRAZY.
My parents were so good to watch the other kiddos, so I could just focus on Jacob and his appointments. We ended up staying a couple more days though, so I could get my eyes checked. I was WAY overdue and my eyes are bad. So it was good that I stayed to make time for some self-care.
And Mark came down for a day trip {he is such a gem}, so that we could visit his cousin who has a young adult son with autism. It was great to spend some time with her and find out more about their journey.
The kiddos had a blast and love spending time with Gramps and Grammy. Benji spent ALL day, EVERY day, outside “working” with Gramps – and Jacob and Sarah were Grammy’s little shadow. Grammy always has the best crafts and the kids loved it.
Lydia did okay, but is still pretty attached to me {but the feeling is mutual so we are okay ;)}.
My Mom was also amazing and helped me prep TONS for our upcoming school year. This women is like the cutting queen! She saved me loads of time and I am so grateful.
Melina was able to spend some time with us and took us to feed the ducks! The kiddos loved it.
And Megan and Linda came over and introduced me to Hamilton {which we had to space out over two nights because I am old and need sleep} and it was fun to spend time with them.
So here is our week in pictures!
