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.