Update

At the end of September a case manager from the ABA home-based therapy company came to do an assessment on J. It took awhile for the insurance to approve and pre-authorize the therapy, but I am pleased to report that it finally happened! Just over two weeks ago, the case manager came to the house again to go over the program for J and his new therapist also came that day. The ABA starting at home was the first huge change over the past few weeks.

Our insurance pays for ABA therapy, and I mention this because I know that not all insurance companies will pay for it, but even with our cost down to 20% out-of-pocket ... between the travelling to ABA and to PCIT the miles were racking up on our vehicles, our savings was depleted, and we were barely scraping by from paycheck to paycheck. We decided that since he would have ABA at home, we would cancel the services at his center. This was a very hard decision, because the therapists and his case manager have been a part of our weekly lives since the beginning of July. They have transformed J, and changed how we are able to interact with him, and simply how we are able to just exist. It was such a difficult decision, but the money simply is not there for him to do both, and to be quite frank the time is not really there for it either.  The ABA center based therapy stopping was the second huge change.

Then on Friday, 10/25, of the same week while at his PCIT therapy J and I were informed that we were done. We had mastered the program together and graduated from PCIT. This was the third huge change that happened in less than week's time. Was I ecstatic that we had made such fantastic progress? YES! Do I feel prepared to handle his behaviors? A little... but if I am completely honest, I am terrified of forgetting or doing it wrong and causing a huge regression to occur.

The second to last day at his ABA center-based therapy, J broke down in the lobby while waiting on his therapist to come out. He is experiencing such huge emotions, he knows the changes are coming, and he may not understand or remember everything just yet... but it was so hard to hear about. I was not there, my hubs took him to the center that morning. He was grieving, and I get it. I am grieving the loss of this connection in his life and in ours. How do you help a five year old with their grief? I am genuinely asking, because I just do not know.

The remainder of this will be an update on J's progress since the July 10th post.

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J started out doing two days per week at the center, and eventually we bumped it up to three days. He was very tentative when he first began, but he separated very well even during his first week there. I do not think he realized until his third week that I was not sitting out in the lobby waiting for him. One of the therapists mentioned "She will come back," as they were walking together to the playroom when J asked about me. That afternoon, he asked me why I leave him and do not go to the back with him. So, we talked about it. I explained to him that his sisters come there with me, and they would get very tired of sitting around waiting for him. He is there for three hour sessions, but I know that he does not really have a concept of time established yet.

His reports have consistently been glowing. Very few problem behaviors. More and more independent mands with his peers and other therapists every time he went. He was smashing through programs, some days he would conquer just one or two - one day he crushed through eight programs. He learned to ask people their names, and if they want to play with him. He does imaginative play multiple times throughout the week that I notice now. I cried the first time I heard him doing it on one of our trips home from PCIT, it was just J and me in the van and he started talking to his toys and acting out scenes that he could see in his mind and I was blown away.

Cory was able to stop going into their Sunday School classroom... and we worried how it would be, how he would transition in August when he aged up to the Kindergarten room. The first week was a bit rough for him, but since then it has been great. We see him running around in there giving everyone high fives when it is time to pick him up, he asks the bigger kids in the class to make him paper airplanes, he runs to his classroom now and does not even look to see if we are coming to check him in. He is excited to see his Sunday School teacher and the kids in his class! He has made some friends in his class, and even one friend that is a couple of years older than him. We had that friend, K, and his mom over for dinner last week and the kids all played, and laughed, and chased each other, and J came up to me and asked if his friend could spend the night. I cannot... I did not think that J would get to a place where he would want a sleepover with a friend.

He and I are doing homeschooling, and now that his ABA center therapy has stopped I need to bump that up a bit more at home. Everything he was doing at the center counted as homeschool stuff for him, so we only worked on the days that he was not attending therapy. He can read some Bob books, and we are working on Phonics, Math, and Writing. He does very well writing most of his letters, but we need to work on spacing (for example, when he writes his name the letters are still pretty spaced out). I want to add in some art activities, so I am thinking that will be something that we do on one or two of the days when his therapist comes to the house.

We are also going to be able to work on going out to public places and help him learn safety skills and also work on behavior modification while there. I am excited, but there have been a lot of HUGE changes in a very short span of time so I am also very overwhelmed.

Next week is my last week of my undergrad program, then I will have one week off and the following week I start my graduate program.

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.

J

I am almost done with my Bachelor's in Psychology, I just have two quarters left. There are many days that I feel like I should have noticed so much sooner, especially with my current educational background. But, that is not a road I want to go down... the "I should have," or "If I wasn't so busy I would have" seen a potential issue earlier. I do not need the guilt from that.

A few months ago my dad and I were on our way to see a Yankee game, and he haltingly asked if I had noticed anything going on with my son, J, lately. He was four, and I mentioned how J had been getting more aggressive and independent in his behavior and in voicing what he wanted to do (or to not do). My dad kept gently prodding, and I was getting irritated because I felt like there was something specific he wanted from me and he was just beating around the bush. I kept racking my brain trying to think of what the "right" answer could be... and right now I cannot recall if I came up with it, or something very close to it. Either way, my dad mentioned that he noticed J kept tossing his head to the side. We talked about it, I told him that I had noticed it and it seemed to be happening more often... but I had been hoping that it was related to J's hair length - he kept asking to grow it and saying that he did not want to get his hair cut, so we let it grow, and at this point it was hanging down to about the middle of his ears. 

I did not tell my dad that I had mentioned the head tossing to my hubs just a few days prior. I did not tell him that I had been mindful about watching J throughout the day more to see how often it happened or if something caused it. I did not tell my dad that when I first noticed it and saw that it happened more frequently that I began to wonder about spectrum disorders or other mental health issues. I did not tell him that I hoped it was just anxiety or stress related... I could not say any of this, because as I listened to my dad he brought up the Autism spectrum... he said that he thought it was a neurological tic... and he mentioned that he began to notice it about 18 months ago. 18 months! All of the air was sucked out of my lungs - how could I not see it?! For eighteen months?

I struggle socially, I did not when I was a kid. In fact, most of my report cards had the hallmark phrase of "she's a delight in class but she talks way too much" on them. I can not tell you the exact time that anxiety took up residence inside of me... but, I know that I was an adult. Married. I do not generally talk to strangers now, there are sometimes weeks that go by that I will even really talk to people I know - outside of the ones that I share living space with. 

Since anxiety came along though... I struggle hardcore. Daily. Especially if I have to leave the house and interact with other people. And, I see J struggle. He hangs back around other kids. He does not want to go into Sunday School. He does not want to go back to preschool. He plays by himself. He does not look us in the eyes while talking to us, or while we are talking to him. He laughs when he's nervous. He laughs when we discipline him. Over the past year I have noticed that he will break down into a sobbing mess over the vacuum being turned on... or other seemingly normal things. Until three or four months ago he did not really do imaginative play, I mean... if he did, it was completely internal. He has only recently started playing like that with his sisters, and he does not last long with it. 

He is super smart though, so, so bright. He has a huge vocabulary. He loves taking things apart and putting them back together. He loves anything that spins, he always has. He knows his letters, colors, shapes, numbers. He can point out the United States of America on a map, and can show which flag is the USA's in a lineup of 50+. He knows some Spanish and is eager to learn more. Developmentally, we have always heard from his pediatricians that he's very bright... and until recently I honestly did not know that children on the spectrum could be bright. I am embarrassed to even write that here for all of you to read. But, I just assumed that because kids on the spectrum tend to be hyper-focused on some thing, that they were then mentally incapable of focusing on other things... and my brain translated this as a mental deficiency. 

Now... I am only an undergrad student. I am nowhere near being capable of saying, "Yeah... this is definitely autism, or Asperger's." Over the past month and a half I have made several phone calls to all sorts of places - even phone calls are something I dread because they mean having to talk to other people - and J has an appointment coming up at a diagnostic and learning resource center. Unfortunately they do not do spectrum diagnostic tests there, however they do other screening and can work to create an IEP quickly if he will need one for school. He has an appointment with a pediatric psychologist who will administer diagnostic testing for spectrum disorders, as well as a host of other things including ADD, ADHD, ODD, anxiety, etc. 

I am anxious for some answers, especially answers about what we can do to help him manage the anxiety I see in him already... more to come within the next couple of months on this.  

The thing about my depression is...

• There are many times it seemingly comes from No Place
• I have lived with it for so long that not experiencing it for even a short length of time gives me anxiety
• It is evolving
• Anger comes now, too
• I don’t want to talk to you when it is bad… it does not matter who you are
• The darkness screams for me to self-harm
• I become numb towards everything … and everyone
• It is exhausting to try to focus
• Fighting the awful and harmful thoughts leaves me absolutely drained
• My kids will never meet the person I was before depression and anxiety took over
• It’s increasingly difficult to me to remember that person

I have had messages, texts, and comments on my most recent picture post. The post was how I chose to reach out… Talking about depression and anxiety – or mental health in general – is something that can make the person experiencing it feel worse. I feel like I am always complaining, and like I truly have no reason to because there are people that are worse off. There is still a lot of stigma around mental health and disorders. It is frustrating for me to try to justify why I feel this way to you, because I do not know why. I do not know what triggered the spiral. Well-meaning people can say the dumbest and most hurtful things to others and not comprehend how unhelpful they are being. So, please do not take it personally that I am not answering phone calls or liking your comments/replying to them. I am in a deep, and very dark, place right now. I know that some of you are concerned, and I know that I am loved – but it is impossible for me to believe these things while the depression is raging. When the rage settles down, know that I am reading your comments, texts, and private messages.

I cannot give up, as it turns out I recently learned that *I* save/d someone else by simply existing. My kids need me. Cory needs me. Knowing these things, however, does not make holding on any easier. It does not lessen the hell that comes when your brain demands self-harm or self-destruction.

Depression is a disease that results from a chemical imbalance in the brain. There are many people that do not recognize this, though. They refuse to accept it. I have been told to “just get over it,” that I “act like [this] to be the center of attention,” and that my life is so much better than it could be, so I am being selfish by acting depressed. As an adult I pride myself on being honest… but, I have started lying occasionally. It is so much easier for people to accept that I could cancel plans, or cannot go do something, because I have a cold, or a stomach bug, or even a migraine than it is for them to accept that I cannot do something because of my depression.

I made an appointment with a different therapist, maybe she can help. In the meantime, know that your messages are being seen. Reach out if you are struggling. There is no shame in asking for help.

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.