During the first phone call to Early Intervention, I quickly realized this was different. The case manager on the other end of the line actually listened to me. She asked questions, we discussed my answers and she started putting together an action plan. To my complete and utter amazement, she also told me that Early Intervention had a feeding nurse on staff that she would be able to send to my home to work with Riley. After over a year of driving 90 minutes to sit in a waiting room for at least two hours only to be moved to an exam room to sit for at least another 90 minutes for some egotistical GI doctor to sweep in, push, poke and prod my 14 pound little guy, ask me questions but not allow me the opportunity to answer and the spout off some diagnosis that did not fit at all with what I was seeing at home, and then to prescribe medication that should "solve all the problems" (but in reality did nothing), then to drive 90 minutes home, in tears, with no answers, no help, nothing...this was an absolute breath of fresh air! On a side note, I completely realize that was a horrific run-on sentence, but that is exactly what the entire experience was like...one big run on disaster!
Within a week Early Intervention brought a team of therapists to our home. They looked at Riley, they tested and evaluated him, in his natural environment, and we talked...for hours. They asked questions, I answered, they listened...even when I gave "mom" answers rather than technical answers. At the end of the evaluation, it was determined that Riley definitely qualified for services due to his developmental delays and severe failure to thrive. The only area in which he was even close to "typical" was in his fine motor development, so there was no need to bring in an occupational therapist (hereafter referred to as OT).
In less than a week, we had a team assembled and we got to work. Our team consisted of a physical therapist (PT) to help with his core strength and gross motor development, a speech therapist (oh...did I mention he was completely non-verbal? Not babbling, not cooing...nothing), a developmental therapist (DT) who helped pull everything together and coordinate all the other pieces of the Riley Puzzle, an RN who specialized in children with feeding difficulties and challenges, and a nutritionist. All these amazing individuals came to our home once a week. Granted, we had quite the revolving door, but we finally had some help and their overriding premise was, "you are the expert about your child". WOW!
Within the first two weeks, several of these amazing women started throwing around the words "sensory processing". In the beginning, my brain was on total overload and there were so many new words, concepts, and so on that I was trying to process and put in context that "sensory processing" was just added to the pile...until I realized it was the same term from several disciplines: Riley is having trouble eating and drinking because the front part of his mouth is so hypersensitive that he would rather not eat than has something pass through the mid-line of his mouth, and: Riley does not like to swing because it feels like he is freefalling, and it went on and on.
I am a firm believer that there are not accidents, rather that what we need is provided for us if we are open to accepting it. Somewhere around Week 3 of working with our Early Intervention team, our DT told me she would be bringing someone with her the following day. This young woman was an OT and new to their agency, so she was "shadowing" our DT to learn the ropes. She also indicated that this woman was well versed in Sensory Processing Disorders and may be able to give me some insight about Riley's SPD issues.
To make a long story short, her visit the next day changed our lives...
This seems like a good stopping place...
Until next time...
Heather
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