The Foorce

I have often been asked by family, friends and well-meaning strangers why I don’t get some help with James a few hours a week to make things easier. God, this is such a loaded question for me. Initially, I felt like finding help would look like I couldn’t “handle” James myself. Not that I see that as a real parenting failure; I mean, raising a special needs child is truly the labyrinth of my life. It was actually the flipside: I felt like needing respite from James would make it look like he was hard to handle, or that he had behavior problems that needed outside help. Generally speaking, James has always been a well-behaved child, yet not an easy child. I also relish the little privacy we enjoy here at home – it relaxes me to be able to hang out in my PJs once I’m in for the afternoon or to let my toddler roam the house in her underwear (or less). It stresses me out to have an audience to temper tantrums, accidents, James peeing with the door open, etc. even though these things don’t bother me too much when I’m alone. It’s the same reason that I complain about my house being a mess but don’t want to hire anyone to help me clean it.

Over time I have changed my tune about respite services. Now I am in the part of Labyrinth where Jennifer Connelly finally accepts Hoggle’s help to save her baby brother from David Bowie, even though Hoggle seems a little weird. (If you haven’t seen this movie, it’s a classic) Though respite might be an “invasion” of sorts, a foreign experience if nothing else, it might turn out to be the thing that helps me figure out the labyrinth. I have been looking at respite as a break for me, as a decision about me. But, James deserves to have some time away from his younger siblings (and me), and since it is near impossible to achieve that the way I could with a typical child (playdates, sleepovers, dropoff sports and classes), maybe respite will be the thing that gives him some time to himself.

The decision to seek respite (http://en.wikipedia.org/wiki/Respite_care) has probably been half the journey for me, and has been a very personal decision that I am not 100% certain about yet. But at this point I figure that I should get through the paperwork and see how it goes – worst case we change our mind if it doesn’t work out. In the meantime, I plan to explain my decisions and document the process to get respite for James and myself, one excruciatingly slow step at a time. Hopefully it will kill three birds with the same stone: 1) to help others seeking respite for their special needs family member, 2) to explain to friends, family and well-meaning strangers how the process works and why the decision can be complicated, and 3) to give me a document to refer to when I am banging my head against the wall in frustration, boredom, or while sitting on hold for 8 hours.

Now that I have started my search for respite the questions I am asked have changed slightly to when I am going to get respite, or why haven’t I hired someone yet, or what in the hell is taking so long to get the help? It’s not that easy – let me tell you what has happened to date. One year ago, I contacted someone at the YAI intake department (www.yai.org) to inquire about respite as well as a bunch of other services I was interested in for James, and spoke with a very nice woman named Laura. She told me James would need a psych and psycho-social evaluation before he would be eligible for services. I am sure many of you know that evaluations, while helpful and necessary, are often not covered by insurance and can cost thousands of dollars. If you have Medicaid or are financially comfortable, this is probably not an issue for you. However, regardless of income, if your child qualifies based on their disability, you may be eligible for some kind of instant grant that allows the YAI to do these evaluations for your child at no cost. You can ask about this when you call their intake department. For information on programs, services, evaluations or referrals, you can call 1-866-2-YAI-LINK or e-mail link@yai.org. If someone does not answer when you call, just leave a message and you should get a call back within a day or two.

Okay, so fast forward 3-4 more phone calls with Laura, who was helpful in explaining the process and what we needed to do very patiently. We scheduled James to have a psych and psycho-social evaluation since his were outdated. There is a wait to get appointments for these things, in our case about 4 months. Presto, 5 months passed and we had our evaluations completed this past Fall – 1 trip for intake and 2 other trips for the actual evaluations, and no surprise – James qualified based on his disabilities for all support services. I read the evaluation reports, had them corrected where there were errors, and then my husband made a bunch of copies for me.

You need the hard copies of these evaluations because from here on out, everything I do and everyone I call is going to want to see them in order for James to get any services. Though we have had a very good experience with YAI, they currently have no openings for respite. However, Laura gave me a great reference that lists other agencies who do, and I have narrowed it down to her recommendations and a few others that I thought would be a good fit for us. Today I called AHRC intake at 212-780-4491, because I heard that the waiting period for them was a little shorter than average. I got a voicemail and was told to leave a message. So after the beep I rambled for a few minutes about our past evaluations, about there being no respite openings at YAI, and about how we wanted to get on their waiting list for Respite and were also interested the Waiver (to help with excessive medical bills) and to please call me back and tell me what we needed to do thanks bye.

So now you’re all caught up. As I continue my search and hear back from places, I will write more posts so that those of you in our shoes (and those of you who are just plain curious) will know how this whole process works here. If you have a question or recommendation as far as the process or agencies go, or an experience to share, please leave it in the comment section!

I wonder who David Bowie will be in my Labyrinth analogy…