X is now 5 years old. FIVE!!!!! I can't even hardly believe that. Yet here we are five years in to parenting a child with a bunch of needs and he's doing amazingly well!
Things X has done since our last post:
- Gone to Preschool
- Graduated Preschool
- Gone to Pre-K
- Graduated Pre-K
- Started KINDERGARTEN!
- Crawling in quad position (hands and knees)
- Cruising around furniture
- Independently standing against walls
- Standing independently for about 3 seconds with no support at all!
- Reading! Yep...really! Reading!
- Using a manual wheelchair
- Starting to use a gait-trainer more for short distances
- Can throw a ball
- Can hit a ball about 50% of the time it's thrown to him
- Lacing things
- Using zippers
- Can put his own socks and shoes on AND can take them off by himself
- Brushes his own teeth
- Combs his own hair
- Speaks VERY well
- Has had new diagnoses
- Is about to graduate from one therapy program
- Can tall kneel without any support for up to a minute
- Can "take a knee" for 30 or so seconds at a time and be totally stable with zero support
- Drawing basic shapes and beginning to form some letters
- Is working hard
- Is growing big (40 lbs and 3 feet 9 inches tall)
- Buckles his own seatbelt on his carseat (with parental supervision and verification of course)
- No longer uses a crib
- Has a big boy bed
- Can get in and out of his big boy bed all by himself!
- Can tell time
You might be getting the idea that he's changed a LOT! He really has. We should also probably stop calling him Little X now because well - he's not little anymore! He's a big boy!
We've also made a few changes to how we're approaching a few things. The biggest one is with X's schooling. While we did try preschool/pre-k and it was okay, it wasn't a great fit. X still has a very minimally functioning immune system. He missed more days of school both years than he was able to attend due to illness. Not kidding at all when we say that if there's an illness within 10 miles, he'll catch it. I WISH I was kidding; but really, truly not. He really does get sick SO easily, gets much sicker than kids with a "normal" immune system, and stays sick for a really long time. For example: In preschool he got sick in November and remained consistently sick until April. November til April. With only 3 or 4 days at most between illnesses. Once he gets sick once, he will continue to get sick and stay sick because his tiny little immune system is stressed and overworked.
This led us to ultimately deciding to homeschool X going forward. It's been a fun thing to do and he loves getting to stay home. One of the new diagnoses we've learned about in the past two years is autism. It's different for every child and how each child ultimately gets that diagnosis is very different. Many times, there's no obvious cause. For X, his brain bleeds ultimately led to his brain being physically rewired which led to the autism diagnosis. If you're feeling bad for him, please don't. X's life is no more or less than it was prior to this diagnosis. Instead, we've embraced it with open arms and are tremendously thankful for all the additional supports and therapies this has opened the way for. That diagnosis is also why he didn't love preschool and pre-k as much. He doesn't read other kids well. He doesn't love loud environments. He has a lot of anxiety and other diagnoses that really make it hard for him to be comfortable in a classroom. So, he's a big fan of being at home!
We've made tremendous strides with his education. We do our work every day and enjoy outings with other kids both with and without special needs when weather, illness forecasts (which bugs are super active) and his health allow. He loves that in small doses, but not all day so homeschooling has been such a gift for him. X is thriving and growing by leaps and bounds under our care at home. We also don't have to worry about how to juggle appointments, medications, therapy sessions, etc while he's attending school in a more traditional setting.
We've also chosen - at the advice of his medical team - to make some medication changes. He was diagnosed with asthma a year or so ago. We've also suspected he probably had chronic lung disease as well and it turns out we were right. So, we're on a daily controller medication and a rescue/illness medication as well. Since making this change, X's lungs get a lot less sick and stay sick for a shorter period of time. Notice I didn't say he doesn't get sick? Yeah, he still gets sick. He just gets...less sick than he has in the past but still is much sicker than other kids.
There's more to X's story now that we've also learned but I'll address some of that later on in another post.
Suffice it to say that all of this and more has led to my life being a
My family, our kids, the day to day needs of everyone and now being the education provider as well has always - and will always - come first. However, I will try to do better. That's the best I can promise right now. :)
Ok, off to do more wife/mom stuff.
Til next time... 💙
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