If there’s one secret I’ve learned from almost 10 years of being a special needs parent it’s this…. You will beat up the only other person that’s the closest to you and your child because that person, (often a spouse, but could however be someone else!), gets it and knows how important it is to carry the burdens and the triumphs, with you!
As a very talented teacher once told me before moving onto a different teaching path, “I know it’s a crazy, beautiful life parenting a special needs kid!” She was right about that and to add to her statement, I’d say “Yes!” and often it is “crazy, beautiful” ……from a distance!” See, we as special needs parents often find our days full of nothing more than PLANNING! So much planning goes on that we find little time to do much else some days! We plan for EVERTHING! Why? Well….we have to. We don’t want to always be in planning mode, but through trial and error of previous horrible mishaps, we are forced to plan out better daily routines to weekly routines to longer ones, which leads us to ask the really tough questions that leads us to the extremely HARD PLANNING! The “What if we’re not here and he still cannot live on his own?” type of PLANNING! This ugly question always seems to linger and has an amazing ability to squash the best of our “crazy, beautiful” days! We try to dig a hole and bury our thoughts off out of sight for long enough to revel in the fun of the day or maybe the entire weekend, but before long something always reminds us that THAT question, still, has not been answered!
Imagine if you will, being in a race against time and if the buzzer goes off before you’re done, you lose. Okay, now picture that loss being the independence of your child! Every day counts, every day matters, each and every day! See how much pressure can build between you and the only other person that gets it! Now throw in different views of any sort, you will almost constantly feel like you are walking on a battle field and can quickly be at odds, with the very one you love!
The biggest set backs and shock that one would hope to find support in can and IS often the very places that limit and confuse and cause that much more chaos to an already tired and stressed world: I speak both of health insurance companies and the school systems that should be educating these children. (Please do not get me wrong when I say school system! It is often our very caring teachers that find themselves between a rock and a hard place on how to navigate a system that wont allow them to fully and somehow often end up on the loosing end of the stick because they happen to be the “face” of the system that may or may not understand the needs of a child!)
The above mentioned stressors often strikes the match, that lights the fuse to the bomb that must go off but alas good things come from these discussions and HARD PLANNING does happen! We are a family of planners! When you have a child with autism or for that matter, any type of special need….. planning ahead as possible can be an indescribable comfort for not only the child, but for the family as well!
It is indeed a “crazy, beautiful life!” that has taught us to live in this strange parallel balance of being completely planned and totally “in the moment”, both at the same time! Because of this unique universe we share with the child we call our superhero, we understand and embrace that pretty much “anything goes” and at the same time he always seems to teach us the ultimate lesson that neither myself nor my husband could have even began to plan for….
Crazy and beautiful moments with just enough constant distance from the world to …(attempt) to plan the next move!