The afternoon of April 20th started out calmly. Andy and Hannah had left the home earlier in the day for an overnight church daddy-daughter camping activity, packing the commotion of preparations and excitement neatly away in the car with them. I had been telling Tony that they would be sleeping out with the trees and coming home the next day, but I wasn’t entirely sure how he would react to their absence. This was to be the first time they were away from him overnight.

I had the first indication that Tony was struggling when he would not eat anything for dinner. We continued on with his nightly bedtime routine, and once he was asleep, I opened the mail. One letter was junk, the other was from the Department of Developmental Disabilities, informing me that Tony’s eligibility for services was up for evaluation and that they required some additional testing to make sure he actually still met criteria for services.

My initial impression was to wonder why on earth additional testing would be required. They have access to all of the current progress notes from his therapists, in addition to his most recent adaptive behavior assessments, all of which paints very accurately the portrait of a child with challenges so profound as to leave no question in anybody’s mind as to whether or not he needs services. However, everything within me plunged into anxiety’s tar-like spiky web when I read that “Documentation is due within 30 calendar days from the date of this letter. If the documentation is not received within this time frame, the member may no long (sic) be eligible.” The bold font and underling originated with the department.

Now, I am blessed to live in a large metropolitan area that has access to the kinds of experts I would need for most every type of crisis or testing that could arise for our little man. However, even with that it is not possible under normal circumstances to get what they required done within the time frame given, and I knew it the moment I saw what they were asking for. While I had initially been looking forward to an evening watching La Usurpadora on You Tube, I was instead sending off e-mails and trying to escape a monstrously sized anxiety spider from wrapping me up and sucking me dry so I could actually sleep.

I had only slept about three hours when Tony woke up, distressed and suffering from fears of his own. He eventually was able to calm down enough to sleep for a couple more hours, but when he awoke his behavior was very muted, he continued to refuse all food and drink, and would not communicate on his speech device. Now, I had done a few yoga poses before he arose the second time, but I have to tell you, there is no way I can get enough Namaste in my day to be fully okay with the amount of stress I’m under in our current pressure cooker.

I watched Tony continue to slip further into despondency all through the morning and early afternoon, right up until I informed him I had gotten a message from Andy that he and Hannah would be home soon. After a few seconds Tony got up off the bench clapping, walked to his device, and asked for chocolate ice cream. I was able to trim away a little bit of my worry in that moment, it was heart rending for me to watch him struggle so. I knew he was going be on the upward path from that point on, but it still took more than a week for him to resume his normal communication, attention, and regulation patterns.

During this week and a half as I was providing additional support to Tony, I was also caught up in two days worth of e-mail exchanges with the department securing a commitment to maintain his benefits until testing was completed. How much work it required to get this done was surprising under the circumstances and continued to supply my corpulent and well-sated anxiety spider with a stream of flies. Consequently, I slept even less than usual and was struggling to make sure I ate enough myself.

I was finally able to reduce the emotional food supply to our ever present beastie once I obtained a written assurance that Tony’s benefits would remain intact until the testing was completed and reviewed. Having seen what Andy and Hannah’s absence of one day did to him, I would hate to see what loosing all of his current providers at the same time for a few months would have done.

However, I remained apprehensive about how the testing itself would go. I knew that Tony would not only require multiple sessions in an office setting he would likely tolerate poorly, but that he would have near non-existent levels of cooperation with this new-to-him specialist. I anticipated paying hundreds of dollars for sessions where I spent most of the time preventing him from either fleeing or harming himself because of those things, which would skew the results towards incredible inaccuracy.

Some stresses I took upon myself during that week. I sent politely worded letters to my state legislative representatives expressing my hope that a plan to increase teacher salaries and educational funding could be found that did not sweep benefits from the department of developmental disabilities. The original plan proposed by the Governor called for such cuts, and it was important to me to use some time to support this community of amazing individuals to which our family now belongs.

Some stresses I decided weren’t worth my time and effort. I had purchased a slew of developmental toys for Tony on-line from WalMart, both for his birthday and some additional items to expand on the therapy and education targets I will be working with him on in the coming weeks. A Melissa and Doug magnet board I bought had some pieces with the images ripped up in spots. Hannah told me, “You totally need to go on-line and review this.” Nope. I may send Melissa and Doug a letter at some point, I spend a ton of money on their toys, but I woke up one morning several weeks back and realized that what happened with Amazon has seriously soured me on writing reviews for the most part and it is stress I don’t need to bring into my life right now.

I was finally able to largely starve the anxiety monster for this particular situation to death only once I received a confirmation that Dr. Shane Hunt would be able to come with one of his interns to our home to do the evaluation and testing requested by the department during weekend hours. In office is the norm under most circumstances where we live.

I felt like I needed to respectfully communicate my concerns with the department about the timeline given for the testing and my concern for families who could not afford to pay for this particular testing. They assure me that someone was supposed to have verbally told me a year ago that this testing would be required. That never happened, nor has it been mentioned at any point in our meetings and discussions prior to my receipt of their letter. They also told me there is a process that comes with a wait for lower income families to obtain this testing without paying the fees themselves, though a list of contracted providers is not available. Both of those indicate in my mind a need for written notice being provided much farther in advance.

Many families providing loving support to a kiddo with developmental disabilities are already experiencing tremendous burdens and suffocating amounts of stress. Unfortunately, sometimes breakdowns and glitches in the processes involved with getting services can add to that.

My loved ones, if sometimes my reactions to things are not everything they should be, and sometimes I know they are crankily not, I am so grateful for those times when you have born patiently with me. Because years of this kind of stress will… mess… you… up.