Proudly Supporting all Military Families with a Special Needs Dependent
There’s, understandably, a lot of anger still in our special needs community. Anger, blame, denial, uncertainty, hurt, confusion, worry about how we can stop another autism mother from taking her child’s life. Many questions – very few answers. Above all, prayers and hopes for Issy, her father and two siblings.
Self-advocates state this is not the time to talk about resources. This isn’t the time to talk about overwhelmed parents, a lack of services and the state of this country’s mental healthcare system. That this time should only be given to Issy and condemning her mother. I don’t understand why we can’t do both. I’m capable of holding this mother responsible for her actions, of praying for Issy’s recovery, and wanting to rally the community to support our special needs families. And I think YOU are, too.
We all know, too well, the lack of funding and services available to our families. We could talk about that for the rest of our lives and still not make any progress on that front. I’m not a policy maker. I’m a blogger. A military spouse. A mother to two boys on the spectrum, and right now I want to talk about how we, the autism community, can support each other. We are failing each other in that respect. It’s time to rectify that.
This past Friday, our readers on www.Facebook.com/militaryspecialneedsnetwork shared their thoughts. They seemed to fall into three categories: respite, emotional support, and action.
Respite. Finding qualified childcare providers is always a challenge. When you add in the fact that we move around frequently, thus lack community resources such as trusted friends and nearby family members, plus have special needs children (especially our medically fragile or behaviorally challenged), it is nearly impossible to find care. The military is slashing its respite services – but chances are, your family never moved up the “indefinite” waiting list prior to PCSing, anyway. The local CYSS won’t take our kids because they lack the personnel to care for them – never mind the whole ADA/IDEA violation that is. We love our children. We do. But, sometimes, we need a break from the demands and challenges. Not for long. We’d be recharged and rejuvenated with just a couple of hours once in a while. If you are a trusted friend to a parent with special children, step in. Offer your services for even one hour, and demand the primary caregiver take you up on it. I promise, we will be grateful and thankful for any time you might be willing to give.
Emotional. For so many of us, it’s hard to find emotional support from family and friends. Sure, we get a lot of, “Just leave him with me for a week. I’ll fix him.” Or, “When he’s hungry enough, he’ll eat. You have to stop catering to him.” We’ve heard, “You need to spank her more.” And, my personal favorite, “Have you tried a sticker chart?”
That isn’t what we mean by support. It’s not what we are looking for, and it sure as hell isn’t what we need. We need family and friends to, first of all, love and appreciate our special children just as much as their typically developmentally siblings or cousins. It kills us when you find our children lacking. They are part of us. If you find them lacking, it isn’t too hard to come to the conclusion that you find us that way, too. We worry so much about their acceptance in society. We fight for them to be treated equally. But we shouldn’t need to do that with family and friends. If we knew – really knew – that despite any misunderstandings or misguided suggestions that we had people outside of our household who loved our special needs child, the weight on our shoulders would be that much less. We’d know that should an emergency happen, someone would be there to raise our babies. For too many of us, our future plan regarding guardianship and estate planning is immortality. And I don’t see that working out for any of us.
Just love our kids, okay? Ask about them. Try to understand their quirks, interests, challenges and why their successes are so precious to us.
Action. Don’t ask us what we need you to do. We’ll say, “nothing.” We know you are busy, too. We don’t want to impose. But we would so appreciate any help. Please, make a casserole. Rake our leaves or mow our lawn – especially if you know our spouse is deployed. Give us a gift card to the local pizza place, cleaning service, or better yet, bring us a gift card for a pedicure and kick us out of the house for three hours (please? Seriously, can I get that?).
We have to get better at building our own support systems, of accepting help and reaching out to others. This that isn’t going to solve all of our problems. Life will still be challenging. And that’s okay. But it will go along way towards helping people realize that they are not alone.
That’s got to be worth something, right?
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