Second, I want to talk about something that we, as a family, do not talk about with a lot of friends and family. Some people know. Some people don't. It's not that some people are more important than others and it's not that we are ashamed of it, but...we just haven't shared it with everyone. Okay, sorry for the vagueness. I'll just be blunt. We are in the process of trying to determine if Silas (the biggest) is on the autism spectrum. We have had had suspensions and he has displayed symptoms for quite some time.
Silas loves to tell us 'hi' and 'bye' and wave at us appropriately. He loves to sing and he is building quite an extensive repertoire of Veggietale songs. He is sweet and caring. He likes to wrestle and run and swing and play with cars. He likes to line up his stuffed animals and 'talk' to them. He dances and does a mean downward dog while we are doing yoga together. He likes to lift weights with his mama and daddy. He loves to ride the school bus and has fun with his friends at school. He is making academic progress as well as social progress. He can climb and run and jump and has such good control of his body. He is starting to like books, but he doesn't like to be read to. He just wants to look at the pictures on his own. He is an ace at some of his games on his ipad. And that kid loves. He loves with his whole, huge heart!
But that's not all there is to say about Silas.
Silas has taken 3 and a half years (basically his whole life) to call me mama/mom on a regular basis and that just started recently. He still doesn't call Dave dad or daddy. My mom and dad and Dave's parents have yet to hear a clear granny/papaw/mamaw. He is just now putting two (very unclear) words together. He has an extremely high tolerance of pain. He is a hand flapper. He refuses to eat if you don't have his 'approved' foods on hand. I'm not talking picky. I'm talking refuses to eat. Meaning he will go days and days without eating a single thing. He sometimes has tantrums that involve banging his head on the floor or wall until bruises form, biting, pinching, scratching (sometimes drawing blood) himself, screaming until his throat is raw, and sometimes he requires physical restraint and relative darkness to get him back under control. He is sometimes too overwhelmed to go into a store to shop. Or if we are somewhere new and there are lots of people, sometimes we can't stay.
We have been waiting for an entire year for an appointment at the Weisskopf Child Evaluation Center in Louisville, KY. After getting all his paperwork and application sent in at the end of April 2013, we waited. In June of 2013 I started calling. I continued to call every single day until mid February 2014. Every day I talked to a string of people and all they could tell me was that his paperwork was being processed. In mid March, after deciding to go a different direction with his evaluation and treatment, we finally heard back from the Weisskopf center telling us we had an appointment scheduled for April 22. I talked to the receptionist at our pediatrician's office and was told that we no longer needed to keep that appointment since we were going a different direction. I called the Weisskopf Center and told them, in a rather smug and snippy manner, that we had decided to go a different direction since they had taken such a long time to get back with us. I confirmed that I no longer needed, nor wanted, the appointment. They cancelled it and that was that. Since the packet of information they sent to us contained social security numbers, medical records, and personal information I took it to work with me. I put it in the shredder, pressed the button, and was glad that I was not longer going to have to wait for the elusive Weisskopf Center to get back with me.
Fast forward to this past Thursday, March 27, 2014 . I finally get a call back from a special program that we were banking all our hopes on for this new path we were taking. It's a clinic here in Eastern, KY just for children with special needs. It would mean no more trips all the way to Lexington for his doctor visits. No more taking off full days of work (which we cannot afford to do) so that I can take him to his doctor appointments. We were thrilled. As we were talking, the sweet (amazing) nurse asked me if we had had our evaluation at the Weisskopf Center yet. I informed her, in my rather smug and snippy manner, that we had declined that appointment since they had taken so long to get back with us and that we, his parents and primary care provider, had decided to go a different route. This route. With this clinic.
"Oh," she said. "Does your primary care provider know that we and the Weisskopf Center are two separate entities that work together and that we need you to have that appointment so that we can best manage your special needs care?" My heart dropped into my stomach and tears immediately sprang into my eyes.
"No," I wept into the phone. "I was told to cancel that appointment because we didn't need it anymore."
"Well, we've had families sometimes wait up to 15 months for those appointments. If you have cancelled your appointment, we'll have to call and get you back on the waiting list." At this point I was basically sobbing into the phone as she tried to calm me down. "Here's their number. Maybe you can call them and see if you can get the appointment back. I'll do anything I can to help you out as well."
I hung up the phone and sobbed at my desk. There was no way we could wait another year. I felt like a failure as a mother. I had robbed my son of this apparently hard to get appointment that he needed to get help. I had done all that, in a stupid smug and snippy manner that no one was going to forgive. I had sentenced us to another long year of waiting on another appointment.
I pulled myself together as much as I could and dialed the number she had given me. I was put through the same string of automated responses and accidentally hung up. So I called back. Tears of defeat rolling down my cheeks and completely ready to beg and plead for an appointment that wasn't a year away. This time I managed to get through the automated system correctly and got to speak with an actual person.
"Yes," I croaked into my phone. "My son, Silas Allen, was supposed to have an appointment on April 22. I called and canceled that appointment because I was told that I didn't need it anymore." Sniffle Sniffle. Quiet sob. "Is there any way possible for me to get that appointment back? I was just told that I do, indeed, need that appointment. I need it desperately." I closed my eyes and waited for her smug voice to tell me that since I had already cancelled that there was no way to get it back. She asked for his social security number and date of birth. I could hear her typing away. I could hear every conversation going on in our office at work. I was hyper aware of everything going on.
"Ma'am," her voice was just plain. No inflection and I basically just started crying. "We still have him scheduled to be here at 8:00 am on April 22. Your appointment wasn't cancelled." Cue happy sobs and complete hysteria. Not even joking! I jumped up from my desk and squealed.
"Seriously?! I cancelled that appointment!" That's at least what I was trying to say. I'm not sure how she understood me.
"Well, he is listed and I'll go ahead and confirm the appointment for you. Is there anything else you need help with today?"
"No! You have completely made my day!" I hung up the phone and completely just let go of all the sobs that I had been trying (unsuccessfully) to hold back.
I immediately called the super nice nurse at the clinic back and told her the good news. She was just as thrilled as I was and because the appointment was so close, made an adjustment to our appointment with them. After even more tears were shed with her, I finally was able to pull myself together and get the rest of the workday done.
When I got home, the thought occurred to me that I no longer had the packet of information that we needed for this long awaited appointment because I had shredded it at work. I called back and they told me that I needed that packet and that it couldn't be resent because it contained all kinds of crazy passwords needed for online surveys that was time sensitive to each case, etc etc, and a bunch of stuff that didn't make sense to me. So my elated mood went simply crashing back to the ground. They told me to continue to look for a day or two, but if I didn't find it I would have to re-do the entire application process and get put back on the waiting list.
Back to where I started earlier today. Sobs. Tears. Shaking. Failure. My fault.
I stood at my kitchen table and just shook. There is no way we could wait for another year, or longer, for this appointment. But I was out of options. I knew I had shredded the packet of information and there was no need to look. I would call back on Friday and get the application process started over again and cancel that precious appointment that was ours.
I mindlessly started shifting things around on my kitchen table and picked up an unfamiliar 'certified' envelope that had been opened. I turned it over and saw a Louisville postmark. My heart skipped like three beats. I pulled out the thick stack of papers and saw the Wesisskopf letterhead. Every.Single.Page was there. It was all there. Not shredded. Not destroyed! It was there in my hands! There would be no need to call and cancel and start over.
You can call it coincidence. You can call it a fluke. You can tell me that I must have shredded something else instead and that it was an accident that someone didn't do their job and cancel his appointment. You can call it a lie. I CALL IT A MIRACLE! A downright, bona-fide, God given miracle!
So now we make plans for this miracle. I have to find a hotel close to the center. There is no way we can drive all the way to Louisville from West Liberty the day of the appointment and be there at 8:00 am. I have to take off work and plan for that.We've got to save money so that we can get that hotel and food and gas taken care of. But the Lord will provide. He will not turn His back on me! He has brought us this far and He will not forsake us now! He is holding my son, and my family, in the palm of His hand and we will not be moved!
Thanks for sticking with me through this long winded story. Thanks for your friendship and your support. Thanks for all your thoughts and prayers and hand holding and tears and everything. I have amazing people in my life and I am thankful for you!