Before I get to the question, I want to thank all of you who have responded either in the comments or by email so far! Each comment has meant so much, and I welcome any and all who read this blog to put in their two cents whenever you have something to say. (tinamarie, please send me an email from my profile page with your email address...I think that will give me your email address in return.)
Now, to the question. For me, the two who helped the most concretely early on were definitely the developmental pediatrician and the child psychologist who evaluated Jack. We only saw the psychologist once, but she gave me the most useful, specific piece of advice we got from anyone...to get Jack into as many structured social situations with typical children as possible and not to do ABA with him. (Note: she was an ABA-trained psychologist.) She recognized his strengths right away, and gave us a direction for using them to tackle the weaknesses. The developmental pediatrician was so responsive, answered all our questions from the MD perspective thoroughly, and helped navigate the military medical system for Jack's best interests.
For moral support and encouragement, our family and friends were such a blessing. A couple of them went into denial ("There's nothing wrong with him!"--they eventually came around), but most were hugely supportive, listened to me talk my way to understanding it all myself as I explained "things" to them, and gave me and George and Jack the love and support we needed. Many asked questions, which told me how hard they, too, were trying to understand what was happening. The preschool director at our church, Kim, placed Jack into a typical preschool class with a PhD in psychology as his teacher. She was one of many angels who smoothed our way to setting Jack up in his treatment plan.
I remember reading horror stories of families falling apart or becoming estranged over autism, and of discrimination and lawsuits, and was terrified we would experience something like that. Praise God we didn't, but my heart goes out to those who were not as fortunate as we were. The beginning of this journey is so scary and so overwhelming, and I will be eternally grateful that there were so many people who said or did the right thing at the right time, or who just listened and responded with love. As cheesy as it may sound, they are a big part of the reason I want to write a book that pays their compassion and love forward.
So, who helped you the most in the beginning?
4 comments:
I would have to say that my training as an Early Childhood Educator helped me a lot, but in terms of others I would have to say our church family/our faith. Then our friends as well...
At the same time though, with being a "reserved" diagnosis it is hard because no one really understands what is going on with us.
Catherine
I knew she had a speech delay so I pushed & pushed to get her a speech evaluation. She was diagnosed with moderate to severe expressive receptive language disorder. I loved her speech therapist she suggested we talk to her pediatrician because she thought there was more to it than a speech delay.
Kristina Seyour
In the very beginning TOny's teacher that helped get a diagnoses helped me the most. She gave me alot of information and when i had questions I would ask her. SHe was truly a blessing for Tony.
Different people define 'support' so differently. I am learning that some people mean support to be 'letting you droan on about something they aren't interested in', to others it meant offering to watch the toddler while the preschooler goes to therapy. True emotional support, the kind that calms you down instead of freaking you out, the kind that listens and hears when your emotions ramble, the kind that actually speaks the words "you're doing great! you love your son! this must be hard but you ARE doing it!!!" has come from a precious few sources. We are so thankful for the openness of friends willing to let me talk through the confusion and the suggested therapies and the questions that threaten to overwhelm many days. The hard part: not wanting to overwhelm the few supporters or 'weary them' with the never-ends confusion of our maybe-autism days.
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