I had wanted to write the following post before Christmas, and well…sometimes life just provides detours, big and small, that redirect your best intentions.
If you can believe, I have been a parent for almost a year now. Sloane has turned out to be the best thing to ever happen to me, and my extensive learning curve lessens with each passing day. Amazing what you can learn in a month, a quarter, a year, the surprises are endless and the material is priceless.
A year ago, I really had no understanding of Autism. Sure, I had seen it depicted on TV, in movies, through books, and conversations, but I had no idea what it truly meant to have Autism. Honestly? I still don’t.
I now think of Autism as a general header, similar to IBS…you have some chronic stomach pain, you visit the doctor. They tell you that you have IBS, but what does that mean? I’ll tell you (from experience), it means they have no idea. In a nutshell it’s gastro related and until 18 million tests are performed (which are almost always inconclusive) no one knows what is actually wrong, how to treat it, nor is there a concise solution. How is this like Autism? I have now met and experienced hundreds of children living with Autism. They are ALL completely DIFFERENT…strengths and weaknesses, levels of competency, social interaction, personality, you name it, yet they ALL fall on the “SPECTRUM” due to a few threads of commonality. To be honest, this drives me bat shit crazy, much like my IBS diagnosis. When it comes to these generic titles, the truth is in the story, not the cover.
I have never met anyone like Sloane, “spectrum” or not, she is her own beautiful snowflake. She is truly gifted in some areas such as, visual learning, modeling peers/characters on TV, has a brilliant memory, and a unique ability to make others emotionally connect to her with almost no typical verbal communication skills. I have personally watched her turn a light on in both “typical” and “special needs” friends by warming them from the outside in. On the flip side, it is almost impossible to know what she is thinking, determine what she understands versus what she is just repeating, nor is it easy to help her comprehend the concept of a question. Just yesterday I asked Sloane how old she was. She replied, “I am 5”. Perfect, right? Well it was, until I followed up by asking her name. To this, my sweet girl responded, “I am 4”. So where does Sloane Caroline Milewski fall on the “spectrum”? I’ll tell you where, both ends, the middle, and in a pot of gold. She brings perfection to her unpredictably. Autism?…maybe. Unique developmental challenges with an uncertain cause/reason?…definitely.
So, where does all of this leave us? What do I do? When do I intervene? Why are these things happening? And, who can help? I have met dozens of people who have guided me along the way, each providing some element of priceless knowledge, but one in particular stands out. This person is so much more than a speech therapist. She is a one man vessel of countless tips, strategies and knowledge. Her caring, compassionate, trustworthy, candid and “can do” demeanor opens heavy locked doors to new ideas, breakthroughs and practice. This person helped me become enlightened, confident and insightful. I am continually amazed when professionals in the field try to fill me with knowledge that she has already bestowed. She allows my tears, fears and honesty while forgiving my inadequacies. She has provided a safe place for me, Sloane and Rog to build our skills, learn from each other, grow as a family and capitalize on our differences. I have become an advocate, a care giver, a bit of a “how to” manual, and a walking Sloane thesaurus. This woman has given me the power to trust my judgement, “go with my gut”, and make tough decisions. Help has a name, and it’s Jen Pedri…or Miss Jen as Sloane lovingly refers to her. Thank you, Jen, you helped me become a Mom…and when it’s your turn, you will be exceptional.
Blog posting comes from: http://karalewis-hmmm.tumblr.com/post/109429458230/help-has-a-name