Being a parent has been the most amazing journey. Being the parent of a kid who has a few extra challenges (I rarely if ever say the words in here, the scary words being hydrocephalus and spastic diplegia, a form of cerebral palsy that affects the lower limbs. For B this means muscle tightness that makes him walk with less coordination and makes balance a little more difficult, this is why he was a late walker. The hydrocephalus is managed by his shunt, which knock on wood, will not fail again but if it does we will cross that bridge when we get to it, I have one helluva strong boy and we are a strong family and can deal with it) thrown in to the mix has been an incredible journey with a few extra pitfalls to take in to consideration. Talking to some of our various professionals, I think a lot of what they need to do is support the parents because they are the ones that are frankly scared shitless for the first few years until they realize that their child is really and truly going to be okay. It really isn't so much about the kids because frankly they don't know a different reality, but for parents trying to be the best people they can be, and balancing work and finances, their relationships, and home, they are the ones that need a little bit of extra support and sometimes just listening to as they evolve in to their slightly adjusted parental role.
Getting over it all... (taking it on the chin, making margaritas...) time moves on... Then, somehow, you grow to arrive in the present moment, no longer as fragile as you once were as a new parent with a whole different set of challenges than you anticipated, more confident, and more capable. You adjust, you grow, you find that you have evolved in to a different kind of parent and person than you ever imagined. Life evens out, hell, it moves on. A few scary words put in to perspective when you envision your cool little person who shrugs off those labels and continues to play and be a kid. You recognize again your dude is really cool, as is your second dude, and you not really knowing any different, discover different strengths and talents.
Moving on to the next chapter as you are where you need to be as a mum, now that it seems your life has moved on and you have grown up a little, you now get to deal with the people who are going to take care of your kid when you are at work. You have to deal with the people who are going to be "teaching" your kid. You realize that even though you have been getting on getting over it (and have moved on and life continues) there are a bunch of people that get stuck on the scary words and their eyes seem to glaze over and their judgment becomes clouded over. The last few weeks have been about transition as we have moved in to a new childcare centre in our place (next age group), and we are getting ready for kindergarten. I see meetings in my future with a bunch of professionals to create a plan. On one hand the plan is about making sure B becomes the best person he can be and to create a education plan for PE, and on the other hand, it is to ultimately support our educational role models (teachers, etc) in figuring out that my kid has a few extra labels that don't really mean much at the end of the day - yes, they could, but the reality isn't quite what they first sound like when you try them out.
It just has been weird how this transition has gone. It has really done me in emotionally between dealing with the new staff (the casual staff and the program head have been great but the regulars freaked out a bit), dealing with a few issues from the past (when B had his surgery and how it was not handled by his last centre), and then with getting ready for kindergarten and making sure they know what to expect, and then setting goals with our physio, and our supported childcare person, and then getting ready for botox injections in a few weeks (which should help B's tone in the sense that it should just help him even further standing tall and get his legs going better, more retraining the brain). It doesn't help we got in to this care program in the 11th hour, or that we got in to our desired kindergarten program 17 minutes before they closed for the summer... One of the biggest deals is that it is a 1km walk from B's centre to school, and we will be walking it. The staff are concerned about how fast he will be and that at the end of last year the kids could do it in 22 minutes. They wanted to march the kids out the 1km and turn around and come back and not even play or rest or take a break in between. Their concern was that B wouldn't make it and make people late. It was "my problem" to deal with... things were looking pretty bad there (nothing like walking to work after a morning like that and wanting to do nothing more than go to your car and have a good cry). I pushed back, talked to the program head, etc... is it reasonable to ask any almost 5 year old to walk 2 km with out a real break? Not so much. 1km B can do.. he certainly is not fast, but he can do it. Will we compromise, absolutely, and yes, we are taking him on nightly walks to work on his endurance (okay, it also helps to tire out C) - if he needs more time, we can come early, or hell, bring a wagon as a "just in case".. take a few elevators, modify your route.. let us see what will work. This is just such a process. It is exhausting on top of everything else. Let him just be himself, he can do it - his way. This is what it comes down to, a similar process to what I went through, you see the words and get scared, and then you realize you are still just dealing with this really cool kid you love more than anything who isn't those words. So over the last two weeks I have had to help the staff get over themselves, and just kick back and enjoy and learn about my son. As if just dealing with ourselves wasn't enough, I get to help a whole new batch of people get over every year! a strange journey I must say.
Bloody hell, I start typing out all this stuff and it is no wonder I am feeling a bit crispy around the edges. And this is just stuff with B, not C, or his daycare, or his needs as a busy two year old - nothing to do with my own work, or selling our house, or dealing with a potential move, or trying to get all my laundry put away the day it happens and not five days later, and oh my god, maybe even getting a few hours with my husband ALONE one of these days..
Okay. Breath. Still with me? This is a longer ramble-rant.
The irony of it all, the second baseball team that I weaseled our way on to (after the first team crumbled at the end and this second team adopted us and continued playing up until this week), those two coaches who weren't professionals were amazing and didn't need to have all these meetings to figure stuff out. They welcomed our kid, played with him, taught him how to hit the ball, catch, and be a goof with a bunch of other kids his age. The other parents were rock stars and didn't question or ask what was up, they just accepted us at face value. What the hell is wrong when 5 of us have to meet to create a "strategy" to make sure that staff in an educational setting feels comfortable dealing with a kid with a few barriers that at the end of the day, are pretty minor barriers that he has already overcome? I don't get it. What the hell do the parents whose kids are so much farther down the spectrum have to deal with? I could not imagine. we are dealing with gross motor stuff - ultimately balance issues and endurance... not life threatening illness, or behavioral issues, or mental health issues. Woah.
We are going on holidays next week, and apparently there are some ciderys along the way. Never heard of a cidery? Like a vineyard only they make specialty ciders.. much more up my alley. I want to
check this one out, and a few others. Find some nice craft brews, ciders.. some fresh seafood, have a campfire.. this is the stuff that matters and puts it all in to perspective.
