J Part II

Much has transpired over the past two months. To start with, I cancelled the appointment with the place close by our home that doesn't do spectrum testing. When I called the psychologist's office two months ago I was told the earliest that they could see us was November 25, and that we wouldn't have a diagnosis until December 16. I wrote the first part of this post on May 8. On May 9 Maddie had an appointment with a new geneticist in a different office because the previous one she had been seeing since we moved here no longer sees patients with PKU. At that appointment her new doctor offered a quick consultation with a child psychologist that visits her office periodically to work with metabollic patients that might have behavioral issues... I explained that Maddie did not really have any behavioral issues to speak of, but that sure, I could meet briefly with the psychologist.

Guys!!! I walked into that room and was face-to-face with the psychologist Jacob had an appointment with in November. I told her I knew who she was, I explained why I knew who she was. We briefly discussed Maddie and she quickly said she did not see anything that needed to be addressed regarding M, and then she asked me to talk to her about Jacob. I told her everything I could about what I had seen, his behaviors, what my dad and I had discussed... and she offered to give up some of her free slots, that she reserves for client calls and such, to get him in sooner. She promised to get back to me by the end of the day. Man! I was soaring, I got to the van and was crying while buckling M in and called to let Cory know we were on our way home... and then I got a text message before I'd even pulled out of our parking spot from the lady. She said she'd see us on June 3 for the initial meeting, June 10 for the testing and June 24 for the results. I felt like she had literally moved mountains off of me and I could breathe! I had not even realized that I had not been completely breathing!! My therapist calls this "an outpouring of God's favor."

So, we made it through and Cory and I have had time to sit with J's diagnoses. We started making phone calls, or sending text messages, to family and some very close friends. I spent the week of the 24th making more phone calls in just 5 days than I do in 5 months. Jacob's primary diagnosis is Autism Spectrum Disorder (ASD). This mostly means he is socially different from typical people. He won't look people in the eyes, even if they're speaking directly to him. He prefers to play alone, and he does not play the same way his sisters - or even his peers - do. He cannot read social cues well, and does not respond in socially acceptable ways most of the time. He displays repetitive behaviors, speaks inappropriate words, sometimes uses baby talk, repeats a word or a couple of words over and over and over, and we have noted that echolalia (repeating what others say verbatim) is something he frequently uses to try to cope with overwhelming situations or feelings.

We have been blessed to find some therapy places with small (1-2 month) wait lists for ABA Therapy (Applied Behavioral Analysis), which is a therapy that is incredibly useful for children with ASD. We have found one center that is about 45 minutes from our home that has started their evaluation process with him - and he did amazing (a story for another day!) his first time there. There is a ranch less than 10 minutes from our home that does equine and nature therapy for children with special needs, he had his first visit there this afternoon. I found a company that provides ABA in-home therapy (a huge blessing since we do not live in a large city), and got confirmation this evening that a Behavioral Analyst would contact me to get Jacob on the schedule. He and I will also begin PCIT (Parent-Child Interactive Therapy) starting on Friday, this will teach me how to effectively communicate with him and teach us how to interact better. It will also let me demonstrate to others the best way to interact with him.

Like I said, much has happened. My school has kind of been shoved on the back burner, but I am almost done with my undergrad degree and then I will be taking a break for a little while to focus on things here. Getting one - or more - new diagnosis can be scary and daunting, especially when the territory is unfamiliar as a parent. We are thankful for the support we have found so far with different medical teams and the new therapeutic alliances we are forming. We are grateful also to the outpouring of love and support we have received from the people we have shared with thus far.

How Charlotte saved my life

Note: There will be much in this post that none of you know, including the people that I lived with at the time. Please know that what you read here has not been written to make anyone feel bad, or to put any sort of blame on anyone. It is the true and accurate account of how my life was saved. 

Moving to Florida with a one and two year old while pregnant with another baby is by far the most difficult thing I have ever done. There were several sources of stress: we had not sold our home in Ohio yet, the kids and I left almost a week before Cory did, everything we owned went into storage, we moved in with family, Cory's new job was over an hour away from my parents', and so much more. My parents housed us when we relocated, they did so out of love and because they wanted to fill that need. But, it was difficult. Their house was not baby-proofed, they have a metal spiral staircase in the middle of their living room, their television was within reach of Jacob and Maddie. The Withlacoochee river is at the end of their not fenced backyard. My dad was working from home... making phone calls, supervising the therapists that report to him, Skype calls, and trying to do his own client notes. I constantly felt as if I had to keep the kids silent from the moment we got downstairs until my dad had left to go see a client, or until my mom got home from work in the evenings. It was the middle of August, and all of the kids' outside toys were in storage, so even going outside to play did not last long. I felt like such an awful person, and like a failure as a mom. It seemed like I was always chasing my kids away from the television, plugged in power cords, the staircase, my dad's office, the cabinets with glass dishes and storage containers and cleaning products, the trash can, their dogs' food and water bowls. And I screamed, a lot. It felt like I was screaming all the time at them. Every day I told Cory I could not get through another day, I would not make it. Every day I reminded him how he got to go to work, meet people, socialize, and learn new things while all of my friends were over a thousand miles away and the only thing I was learning was that I did not have what it takes to be a good mom. I was exhausted, depressed, angry, bitter, and eventually very resentful. I know that this does not paint a pretty picture, but... it was not one at the time.

I sank deeper and deeper into my depression, and was constantly on edge even when I did not take my anxiety into account. By the end of the month I had holed myself up behind steel walls, I did not talk unless I had to. This was probably the only time in my life that I had managed to not relay my thoughts and emotions through my eyes. In September we moved into a rental, we could barely afford it. Cory's dad took over paying our mortgage on the Ohio house because we could not pay it and rent. The kids, or I, took turns being sick. Our stuff came out of storage, but most of it went into the screened in lanai because the house was small and could not accommodate it. Cory would take the kids outside when he got home, and they loved that. I sat inside because it was so hot, and I was still miserable, exhausted, depressed, resentful... and I began to plan my suicide. I knew that initially Cory would struggle, and the kids would not understand... I believed it was best to do it after delivery because they were so young that they would not remember me, so it would affect them less than if I waited until they were older.

I considered many options for leaving this world, and began to narrow down what I thought I could tolerate. The one thing that I knew for sure was I would wait until after the baby came, because regardless of how crappy a person and mom I was - I knew that she deserved to live. I could kill myself, but I was not going to choose to take her with me. I planned to leave, after one of my last OB appointments and just drive as south as I could get. I was going to have the baby, and ask the hospital to call Cory once I had been discharged to tell him to come get her. And then I was going to slit my wrists and that would be it. And then, at my next OB appointment my doctor offered to induce at 39 weeks because she knew I had two young kids at home and that I had not had issues with delivering either of them. I was so relieved, because her offer meant that I only had five more days left before I could stop my pain and misery. I called Cory and my parents on the way back home to tell them about the scheduled induction. Things would have to jostle a bit, I would need to walk away from the hospital while I was alone with the baby... but I felt prepared. We had flown Katie and Zane down to be with Jacob and Maddie while we went to have the baby, and there was no immediate plan for when they would fly back home... so I knew that Cory would have a bit of help adjusting to another kid on his own.

Labor progressed slowly at first, but my parents and Cory were there. I remember being thankful that my dad was going to see Charlotte be born, my mom had been there for Jacob's birth but my dad had not been able to come. It felt right to me, I felt relatively at peace. I was surrounded by the people who loved me at my best and at my worst, and I knew they would be fine together when I was gone. I knew that my kids, and Cory, would be well loved and taken care of. And I knew that nobody would have to deal with me bringing them down anymore. I rested when I could during labor, but delivery came faster than we expected. Someone called the nurse in to check because I felt like something was wrong, and she paged the OB right away and got some other nurses in there. They were lifting me and moving quickly, trying to keep Charlotte in until the OB arrived. A doctor I had never met before walked by, peeked in because of the commotion and gloved up faster than I had seen anyone glove up before. Charlotte's head was out already, and thankfully this doctor came by just in time to help with the delivery. I had not pushed, at all, that little stinker had delivered herself! My OB made it into the room in time to deliver the placenta.

Jacob did not nurse, I had such difficulty trying to get him to latch. Maddie latched well, but because of her PKU we stopped nursing almost right after getting home from the hospital. Charlotte latched. She was a pro at nursing. The first time she latched her tiny fingers had somehow curled around mine... and I knew that I would not take this away from her. If she was going to need me to eat, I could wait a little longer to end my life... after all I had already waited several months because of her. Around the end of June, Charlotte stopped nursing well. In fact, she really became uninterested, and eventually she refused to nurse at all. By the time that happened, I had already entered therapy. Cory and I were doing marital counseling, too. I had started an anti-depressant and was beginning to feel a little better... and the plan I had made to end my life was dissolving.

Today, my spunky and rebellious princess turns two. Two years ago I had no plans to be alive days later, in fact I was so sure that I would not be. As I sit here getting this story out, most of it feels so far away and nightmarish. But, I know it happened. The tears spilling down my face as I sat here staring at this blank computer screen, knowing that I needed to get this out, remind me that this is my history. J, M, and C... I promise that I will do everything in my power to ensure that it does not become your destiny.

All my love. All my life.