Three-esta

In November, we had Beckett's Special Education evaluation. It was quite a crowd. In addition to me and Beckett, there was the Diagnostician, a Physical Therapist, Occupational Therapist, 2 Speech Language Pathologists, 2 Vision Teachers, and a Teacher for the Deaf. Prior to this meeting, we were sent questionnaires to fill out regarding Beckett's development so they had some sort of idea about what where he was at when they did get to meet him. After their introductions, all the specialists observed Beckett's movements, and interactions, while they all took turns asking questions about his development that were specific to their individual evaluations. I answered what felt like never ending questions while they all fawned over Beckett, and they sent us on our way. As the diagnostician was walking us out, I had a little check in the see if she thought he would qualify for Special Education services. She was nodding yes, as she made sure to tell me she'd let me know once she looked over all the findings 😉

I got a call about a month later from a placement coordinator stating that the district had an opening at Greene Elementary, one of the 3 elementary schools by our house, but it was in the afternoon class. I immediately asked her if I could decline the opening, as Lincoln goes to the school we are zoned for. She said not to worry, they had an opening at Wedgewood, but it would also be in the afternoon as well. I was feeling discouraged because I knew an afternoon class wouldn't be possible for him, since he still naps during the afternoon class time, but relieved at the same time, thinking this would make my choice of whether to send him to school or not very simple. She said I have freedom to turn down anything they offer me, that I can just give her a call! I wanted to sit on it, and wait until his ARD to see what their decisions actually were going to be regarding his qualifications.

Before we had the ARD, first we had to find out if he qualified. I had a video call again, with the same team that did his evaluation. It was an hour of them all telling me how delayed he is, how he's in the 1st percentile across the board when compared to his peer's development, so that was a fun meeting to be a part of, but it's a box we had to check in the process. Spoiler alert, he qualifies for Special Education services. On top of that, he qualified for PT, OT, Vision, Hearing, and Speech services all provided through the school.

A week later, we had his ARD. This was at Wedgewood, and it included an OT, Vision Teacher, Teacher of the Deaf, SLP, SPED Coordinator, Principal, and his teacher. When we started going through the ARD, I immediately expressed my concerns about them wanting him to be in the afternoon class, and the Coordinator looked over to his teacher to make sure, but they assured me he'd be in the morning class. With this unexpected news, I felt much better about the potential of him starting school. We continued through the ARD, all the while Beckett put on a show for them. I agreed to all their findings, agreed to the goals they recommended, and went home to register him to start school.

I got a call that his new ear molds finally came in. In this appointment, they programmed his new molds based on his last ABR. We discussed his ABR results from November. His audiologist isn't as familiar with ANSD (Auditory Neuropathy Spectrum Disorder) and the benefits on a cochlear implant, so she connected us with another Audiologist colleague of hers who specializes in this exact transition. We are going to meet with her and his main audiologist together to discuss what our next steps would be with the cochlear implant. His audiologist wants to be very present in the process so she can learn more herself when it comes to an ANSD diagnosis, and cochlear placement.

 A couple weeks went by and we had our appointment with his audiologist (who I personally love), and the audiologist who specializes in cochlear implants. They did a behavioral hearing test on him in the sound proof booth, to try and gather more information from what the ABR showed. After they got as much data as they could before his patience was shot, we talked about what they saw. While his ABR in November had findings consistent with the ANSD diagnosis, they aren't fully certain that that's what it is. They believe he just has profound hearing loss in his left ear and that's why his nerves weren't responding in the sedated hearing test. With that said, a cochlear implant is an invasive procedure, and we don't want to go that route unless we're certain that's the best thing. For now, we will continue to monitor his hearing through behavioral tests, as well as an annual sedated hearing test until we can get the whole picture about what exactly his hearing on that left side is. We are going to get a new ENT that works with these audiologists on kids with hearing loss because he will be the doctor that puts in the cochlear implant, and he will need to start monitoring Beckett from this point forward.

He had his three year well check with the pediatrician and she checked him out to see how well he's growing. He's in the 78th percentile for height, and the 68th percentile for weight (thanks Kate farms) 💪🏼 She also wanted to make sure we didn't need anything from her since all his specialists mostly go through her. Beckett outgrew his orthotics before we even moved back to Houston so he hasn't been wearing anything to help his right foot grow properly. He really needs to be wearing them to prevent long term effects on his feet, so she sent over a prescription to have him get fitted for a new pair so hopefully we'll be getting in there soon!

He's in school now for morning half days, and after a rough first couple days he's being doing really well at drop off. His teacher think he's the greatest and wish their whole class was full of Beckett's (can't say I blame them). They always tell me all the funny stuff he does and how he knows the order of events in class...he loves a procedure to follow.

As we approached Beckett's 3rd birthday, I was really feeling the widening gap I observe between he and his peers. Sometimes it's people at the grocery store who try and interact with him, and when he doesn't respond they just go on to say how tired he must be. I remember when Lincoln turned 3 like it was yesterday. At that point, I remember feeling like he was less a toddler, and becoming his own person. He was fun to take out to stores, we could take him to the movies, it was less stressful, and all around fun. Beckett is so not, and the differences are becoming more obvious the older he gets. He's not a baby, but yet he still is. A one year old, in the body of a three year old.

All his main diagnoses that affect his overall development are a spectrum: Congenital CMV, Lissencephaly, Cerebral Palsy and I recognize he's on the less severe side of the spectrum. We never expected he would walk and he's recently become very experimental with food (although most of it ends up on the floor or in the dogs' mouths). But that doesn't discount the fact that he's nonverbal, and quite delayed in many areas that are becoming more apparent the older he gets. I recently read a book called Remedies for Sorrow. It's by a fellow cCMV mom who writes about her experience with this virus that so many pregnant people have never even heard of before their child is diagnosed with it, and all the complexities it brings to our lives, and the lives of our babies. I spoke with my therapist about all these feelings and she reminded me that birthdays, holidays, anniversaries, are all times when grief is common to come up. All of that is to say, I know how lucky we are to have Beckett in our lives, but raising a child who is different than what society is built for is tough.