Trimming the Fat

Today I was sad, but I'll get to that...

It has been months since I have had time to sit and reflect and write. Since February FMO has been in school. We went to summer ESY session, and his regular teacher was the summer teacher, which was great. There was a fill-in therapist who impressed us in just a few short sessions. She was very naturalistic in her approach, fun and energetic. We tried to get her to join the IEP team, but she has some logistical challenges. She is also friends with our current SLP. She doesn't want to step on toes, and despite attempts on my part to integrate her, rather than set her up to replace the other SLP, she seemed very uncomfortable about such an arrangement. She said she would check back with the team in November.

When Fall rolled around, it was a real turn of events to see all new children like deer in headlights, most never having been in school before. My son was the old preschool pro. He knew all the staff, where all the toys are, and he was familiar with the routines. One boy has taken a shine to him, declaring, "He is my best friend because he has a mohawk." This started a trend, and now many voices regularly echo the declaration, "He is MY best friend." Securing a seat next to FMO at activities has became a heated daily competition among many schoolmates. Works for me.

School has definitely been beneficial overall, but it has never been a perfect fit. It is noisy much of the time, something that seems to impair FMO's ability to attend to and comprehend verbally delivered information. Speech therapy has never materialized to be what is he really needs it to be. We continue to make progress at home, and speech continues to move in the wrong direction, feeling like a waste of my son's precious learning time.

We got a referral to an SLP from our primary care physician, but she is overbooked and understaffed and cannot see him right now. In search of resources, I found Rite Care, a free speech therapy program sponsored by the Scottish Rite Masons. We are pursuing this option as well as music therapy. My dad came up with that idea. Music is FMO's thing. Playing keyboard is one of his favorite activities. He listens to music most of the day. Our first appointment with the music therapist is this coming Tuesday. I'm pretty excited to give it a try.

FMO has made huge strides with potty training, but he still does not have it 100% down. I recently reached out to the Camaratas for input with that and other challenges. Mary called me right away after receiving my email, delivering her usual brand of wonderful support and guidance, and reminding me of why I have such a high opinion of her

I am feeling more optimistic about these new prospects ahead, and about eliminating counter-productivity from the schedule. So, why am I sad today? I am discouraged by recent interactions with MAO's family members who are not on board. I felt sucker-punched to hear the all-too-familiar "A-word" being tossed out again. After everything we went through, years of doubt, fear, research, isolation, tears, research, and, most importantly, faith, we finally found professionals we trust, and an answer that fit. All this and some people just refuse to accept it. Why? Why is it easier to accept autism than an auditory disorder? The answer I derive is the disturbing part. Some people prefer to believe something that provides an excuse to stay detached without feeling guilty. If it was said that a person makes zero effort to learn about her young family member's communication disability or to pursue any relationship with him, she’d come off self-centered and insensitive. If she “just can’t connect” with her autistic relative, who could possibly fault her?

I have one priority, one purpose, one love. I will not divert time or attention to dead weight. For every one who takes and brings us down, there are countless more who give, encourage, lift us up, and keep us afloat. My infinite gratitude goes to you. If you are on that list, you know who you are... We still talk to you.