Sharing Information

Sometimes when you have a child with a disability you have to seek out assistance. This can be in the form of childcare, or someone to lean on for emotional support, but most often it is in the form of money or services. Kids with visual impairments, and any impairments, require a lot of extra help that other kids don’t need.

We have recently found ourselves in a position where we need to allocate more benefits, even though we do have health insurance. This has led to me sitting down with a state agency and applying for additional funding and services. When they asked what Eddie needed, I replied with, “What do you got?”

Seeking financial and medical support always feels a little depressing, but if Eddie needs it, I can’t not try to get it. Just like most agencies, a woman was sent out to our home. She interviewed me for two hours asking every last detail about Eddie. I pretty much talked her through a “day in the life” of Eddie, and how that changes from month to month and year to year.

The hardest part about this kind of interview is that I had to address every aspect of Eddie all at once. When you take him a piece at a time, it isn’t too overwhelming. However, when you dictate every single one of his needs…and every single way he is delayed…and every single one of your concerns all at once…it’s positively heartbreaking. It felt like any amount of help would never be enough…that Eddie would never have everything he needs.

This didn’t drive me to days of depression…but certainly hours of depression did follow. I had to “sleep it off” and wake up the next day tackling the long list of things that had to be done…phone calls that had to be made…and again dealing with Eddie one piece at a time. It’s important to consider Eddie in his entirety, but it’s also important to ignore some things when necessary; like when I feel I’m on the verge of a total meltdown.

A week after the interview, I was called again. The woman who came to our house had more questions for me. She wanted to focus on the behavior problems and see what we could tackle there. One of her first questions was, “How much stress do you have?” Hmmm…what exactly did that mean?

How do you quantify such a thing? Every outburst from Eddie brings up emotions in my husband and myself that we have to address. Whether it’s sadness, or anger, or fear…stress levels peak daily. All I could say was, “A lot. It causes us all a lot of stress…Eddie included.” If all we need is to be stressed out to receive services…we got this.

Whether we are forced to share information with schools or agencies…or we chose to share information with friends and strangers…we are always asked to talk about our children with visual impairments. Even though some times are harder than others, it is always good to share. I just keep telling myself…deep breaths…and it is OK to cry.