I got a lot of advice after my son was born and we learned of his Down syndrome. Suddenly, there were experts (“experts”?) at every turn, offering words of advice on everything from what to feed him, which therapies to start, and even tips for hiring a special needs attorney.
I remember bristling at that suggestion, thinking that if it ever came to the point where we thought we needed an attorney, then the situation would be so off base that we would just remove him from whatever was causing the problem.
Alas, first time mothers often make mistakes on which they later reflect in amazement.
I never imagined that I would have to spend hours revising IEPs, or that I would worry incessantly about the words I chose, so as to not affect the reputation of my family and negatively impact a situation for my other children. I never thought I would have to nitpick every last detail about my son’s schedule, both at school and for extracurricular activities, to ensure the highest level of inclusion. Some days (years!) I worry more than others; some activities cause more stress than others, while still other situations leave me banging my head against the wall. And, on the flip side, sometimes I find myself in a complete state of astonishment because I don’t have to work at all to find the right balance for Alex because the party on the other side of the scenario just gets it (church programs and dance studio, I’m referring to you here…). That situation doesn’t occur often, but when it does, I find myself happy but also frustrated, because shouldn’t it be that “easy” all the time?!?
Beggars can’t be choosers, though. I’ll enjoy these rare occurrences whenever they arise.
I’ve seen the term “Warrior Mom” applied to mothers of children on the autism spectrum, but I think it is fitting for all mothers who are fighting for their children. While mothers of children with special needs might find themselves with more cause to battle schools, government institutions, healthcare companies (the list could go on and on, I’m sure), all moms who advocate for their children are Warrior Moms. Our armor? The tough skin that you have to develop to take all the nonsense, set backs, and other struggles that come with this territory.
And let’s not forget the dads! I so rarely hear about the fathers of children with special needs and their advocacy efforts. They may not be the vocal parent at the conference table, but they are just as involved in the process. Advocacy is definitely not a one-person show.
While Alex has been blessed with many great teachers, therapists, and cheerleaders, we still spend a lot of time making certain that he has every opportunity available. I tend to be a “pick your battles” kind of mom, except when it comes to matters of inclusion. I don’t mess around there. I’m trying to relax this summer, and take a break from the constant looking-over-shoulders that I find myself doing during the school year. So far, it’s been difficult to step away; it’s now to the point that I feel that I’ll miss something if I let my guard down for even a few weeks in the summer. It’s pathetic to think that, right?
I’ll always feel that way, though. I suppose it’s just one of the many pieces of this big advocacy puzzle that we’re still trying to put together.