Last year around this time, our lives had been thrown into complete chaos. At Lila’s one year check-up, the discussion inevitably turned to some of Lila’s “red-flag” behaviors for autism: she was not pointing, not wanting to play with her Daddy or me, not responding to her name, not looking when we tried to point at something, very little eye contact, not interacting with other children at daycare…
After her initial developmental assessment, Lila started therapy with SoonerStart at 15 months of age. At that point, she would barely even acknowledge my husband and me. She was often in her own little world. It was scary at times, when we couldn’t get to her. We were terrified that we’d lost her.
We were beyond overwhelmed, and our heads were spinning. What did this mean? What would Lila’s future look like? Would she ever be able to live on her own? How in the world were we going to give her all of the help she so desperately needed?
In October of 2013 a woman named Janet entered our lives – and she would change everything. She is (by trade) a Speech Language Pathologist, although she is very well-rounded in all areas of therapeutic services. Through SoonerStart, she is contracted to come out and see us once a week for a 1 hour visit. During our sessions she taught my husband and me how to get into Lila’s world, and help draw her more into our world in the process. But that’s not all she did….
Janet and I have been in constant contact since then. I just counted and over the past year we’ve exchanged over 350 e-mails! She successfully helped us navigate through the initial shock of how far behind Lila was developmentally, saw us through the official diagnosis of autism, and acted as a sort of family therapist in the process as well. She’s our “go-to” person for information and advice on all things Lila. Receiving one of her lengthy e-mails jam-packed with links and all sorts of useful information is my version of Christmas.
The change we’ve seen in our daughter is unbelievable. She wants to play with us, seeks out those interactions. She’s mimicking sounds, some actions, and has started to say “go”, “yeah”, and “yay” in the correct context. She has started using PECS cards to tell us what she wants to eat or drink. Little by little, we’re breaking down the barriers and are finally starting to communicate with Lila.
Janet swears that (not unlike Mary Poppins), she is giving us the tools we need to help Lila thrive and succeed – and that one day, we will not need her anymore. However, we just cannot imagine our lives without her. She’s beyond selfless – she will say that all of Lila’s progress is because of Bill and me – that we are the ones who put in all the time to actually follow-through with her suggestions. She’s an angel (I’m fully convinced), and she came into our lives for this very important purpose. We’re forever grateful; she’s family now, and always will be.
What better way to thank her than to make sure everyone knows what a kind, generous, and amazing human being she is?
I mean, she helped give us our daughter back…. and I cannot think of a more profound gift!
Ok so I shouldn’t have opened that mail while waiting for my chai at Cuppies and Joe. I was weeping in my cupcake!
All of that is just the sweetest thing to say ever, and I’m so appreciative. Best Christmas gift – hands down. Thank you!
That many emails?! Seriously?
This is so sweet I can’t even figure out how to respond.
One of my mentors always said “If you want to do this a while and avoid burnout – motivate, educate, support…and work exactly as hard as your Soonerstart family.” You all work so HARD. And with such joy! It’s purely a pleasure & a blessing to watch you put thoughts and Internet links into action. I’m equally grateful to you all and honored to be a part of your lovely family!
Janet
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I just found your blog through Autism Daddy and I’m so glad I did! Lila is just beautiful and your posts about being an autism parent really speak to me. My 3 year old son Braedon was diagnosed with ASD this past April and I can really relate to what you wrote about knowing something was wrong well before your child was diagnosed. I can’t wait to continue reading about all the wonderful progress sweet Lila is making!
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Oh Wow you are so lucky to have such a wonderful person to guide you on this Journey, I feel like I am sinking most days with my little one, he is 20 months old and non verbal, he was diagnosed at 12 months and so hoped he would get Early intervention but to be honest I feel as though we are getting nowhere, I am hoping this year I will have more time to research how to help him myself as I feel as though I am waiting for outside help that we are just not getting, I love your blog. Thanks for sharing.
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