Tuesday, July 1, 2014

More ketchup...er, I mean catch up

My last entry didn't quite cover everything my family has been up to over the past six months, so I felt like I needed another paragraph or two to cover the important things.

Most importantly, I want to talk about how much progress the kids have made since we sought out intervention, school, therapy, etc. for each of them. Karys turned 4 this past March. Kai turned 2 on February 29 (or February 28 or March 1...he's a Leap Year baby). Back in November, Karys was evaluated by the public schools here and enrolled in PreK and started regular speech and occupational therapy during school. I cannot brag enough about the Port Clinton public school system and their attention to ALL of their children. They have some of the best practices in place for kids with special needs, and they embrace inclusion whole-heartedly, which is something I feel is very important. Anyway, around the same time Karys started school, I started thinking about Kai and his development. He had recently lost all of his speech (about 5-6 words). Words he had started speaking around 14 months old, he was no longer using. While Karys's speech problems raised a red flag, Kai's speech regression brought forth an entire army in my mind. I started doing MORE research, and evaluating him myself with the online questionnaires. The results of his M-CHAT blind-sided me. Not only was he "highly likely" to be autistic...he scored significantly higher than Karys even. Karys's team at school told me to contact Help Me Grow, which is the state-funded program in place for children under three years old (the public schools handle all children over three). I was JUST starting this whole "autism journey" with my daughter, how in the world did I now find myself doing the same thing with my son??? It just didn't make sense...or seem fair. Despite my hesitations, Help Me Grow and the state of Ohio once again surprised me on all levels and far surpassed all of my very low expectations (and they would have surpassed them even if they'd been at their highest). For once, I couldn't believe how well-prepared our government was and what great, quality programs they had in place to take care of families in our situation. I kept asking, "but it's income based, right?" If I'd learned anything from being middle class my entire life, it was that we're the ones that get screwed. We never qualify for any government assistance, yet we don't quite make enough to pay thousands of dollars for private therapies, doctor appointments, etc. And my health insurance had become basically useless over the past four years thanks to healthcare reform, so I knew I was out of luck there (more on that later if you don't believe me). But I kept getting the same answer: "no".  None of it was income-based. Karys was attending school a year earlier than "typical" kids were allowed, at no charge. And Kai would begin receiving services through Help Me Grow for no charge as well. I was finally grateful for something in this big, huge mess. So, Karys started PreK in November, and Kai started therapy with Help Me Grow in December. Oh, and another bonus of HMG...they come to your HOUSE! I didn't have to shuttle him all around the county or state taking him to all these different appointments!

In the eight months since we started this journey, Karys and Kai have both made more progress than I ever expected. We still have a long way to go, trust me, but progress is progress. One of the services Kai receives through HMG is called the P.L.A.Y.  Project. If you have not heard of it, look it up. It was developed by Dr. Richard Solomon, a Developmental Pediatrician located in Ann Arbor, MI. The P.L.A.Y. Project was EXACTLY what I'd been looking for. I loved everything about it. I started doing more research on Dr. Solomon and realized he was within just a couple hours of our house! I called his office and much to my surprise, he was accepting new patients! Karys and Kai already had appointments scheduled with another developmental pediatrician, but by this point I did not want to settle for anything less than Dr. Solomon himself. He is a powerhouse in the autism field in my opinion and his intervention methods were right in line with what were quickly becoming my own personal "autism-mommy commandments". So, I immediately scheduled appointments for Karys and Kai for August 11 and 12, respectively. It seemed like a lifetime away when I made them back in February, but it is now just a little over a month away. I am both nervous and excited. My kids are already both getting the best possible care they can receive in my opinion, but Dr. Solomon will be able to provide them with an official diagnosis of Autism Spectrum Disorder...or not. Either way, it will be the ending of a chapter for us. And, no doubt, the beginning of a new one.

k.

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