I tried not to be too upset, but really? I do remember the days when I was the service coordinator advocating for a parent’s rights under the law/regulations, and I thought I understood the parent’s frustration then with the system. However, today, I was that parent. Today, I was not just frustrated but angry and downright pissed off!
I really didn’t know who to be pissed off because everyone seemed to be pointing at someone else. Caitlin's IEP last month seemed to go okay. I knew, though, that I would be having an issue with the transportation part, but wasn’t really sure at what level. So I accepted that the IEP just stated “door to door” transportation with no mention of car seats, because “the transportation” people handle that part of it (or so they told me). Yeah right! I knew better, but I didn’t push. I figured if it said “door to door” it gave me enough leverage to argue later about the details of how this would be possible given the size of my child.
So here it is, two days before Caitlin is supposed to start her Early Start program with our new school district (Newhall, which I haven’t been happy with since Evan had his troubles - that was the reason for the first move, and the doubts about this recent move), I found out they DO NOT have the proper bus safety seat for her! I had an appointment at 8am with the Director of Transportation, but he was late, and I had been told to go to the wrong building. Fine! I was so ready to yell and scream at this idiot for his lack of consideration and laziness. I was ready to take names, numbers, and raise all other kinds of hell…then I met him. He was apologetic and moving slow, and then I realized the man was ill. Oh Geez! I had to stop and think that even with my current need to provide safety for my child, I do still have compassion.
So I went through the most frustrating part – subjecting my child to trying on the seat “harnesses” that I knew were too big for her size. We even tried the extra-extra-extra small size just for good measure. It is still too big. I tried to show him the link on my phone (stupid phone can’t show the stupid Flash picture) of the type of safety seat I was looking at. He argued that a “car” seat will not fit or secure safely to the bus seats because of the angle. I agreed and explained that that was why I needed to have this seat on the link on my phone. He wasn’t really hearing me. He then said, well if you have the car seat you will just have to have it available. I told him I do have a “car seat” but that it is just a normal car seat, and I am not giving the bus a “car seat” knowing that it will not securely latch to the bus! The type of seat she really needs needs to be special ordered and with 2 days left? What are your plans, I demanded? I was really taking lots and lots of deep breaths; he was, after all, the guy who could authorize the solution my daughter’s needs.
I tried to explain the reason for the adaptation and Caitlin's dwarfism diagnosis. He interrupted me to state that “Dwarfism runs in my family”, and (after taking another deep breath and using my nicest smile), when I responded “oh really, what type?” he looked surprised and hesitated to answer me, and finally just said, “ I don’t know”. I kindly informed him that there were over 200 types, but when it comes to Achondroplasia, I can help if he is interested to know more about it because that’s what Caits has.
He smiled! I mean really smiled and then actually looked at Caity. I then asked if we could go to his office to look this safety seat I had up online so he can see, so we could be both in the same page, and he agreed!
He asked for the name of the website and was surprised to find that it is the same company he orders the “harness” from. Then, instead of telling me he would be in touch or dismissing me to come back again at another time, he called the company while we (Caits and I) sat in his office waiting. On the phone he requested the specific safety seat from Safe Guard recommended by Vita Gagne (thanks Vita..muah!), specific to Caits' measurements! He asked them to overnight it (yes, overnight!) and will call me tomorrow if he doesn’t get it or he is not happy with what it looks like.
Wow… I thank God for my patience today and giving me compassion when I really didn’t have time for it!