Ten years, six months ago, my fourth granddaughter was born. The most beautiful thing you ever could have seen. I didn’t see her every day, although she was the first grandchild living in the same city. Christmas came, the older three granddaughters fighting over who would hold her. She met all her babyhood marks: sitting, rolling over, babbling, smiling into our eyes. She was totally with us. Pictures with her older cousins, where she was totally there.
Flash forward about 14 months. Her parent’s wedding, and Lilly was living in her own world. Somewhere between four and a half months and eighteen months, she had become autistic. Severely so. Non-verbally autistic. No one would admit it. Not me, not her parents, not her pediatrician. My husband suspected, but we wouldn’t hear it. I still don’t know what autism is, but at least in Lilly’s case, I (and we) would say that it is not something she was born with.
Eventually she was tested (required a new pediatrician, the old one would not agree to even having her tested). Eventually we all accepted the diagnosis. But she was always our Lilly. She always loved her parents, us, her older cousins, and her siblings, as they came along.
The first therapy was speech. Over a year of speech. She had been tested, no hearing loss. She hated it! No progress, just lots of wasted money. Then ABA therapy. Yes, she could say her name, her age, if prompted. They taught her, very unwillingly, to play sharing games, like chutes and ladders. I will not say there was no progress with ABA, but it was more training of us to deal appropriately with Lilly than it was behavioralist training for Lilly.
Public education has been her (and our) saving grace. She started in pre-K, at age 4. These people are my heroes!! I will never forget her first half-day. I stayed in the parking lot, assuming I would need to rush in and “save” her any minute. Her teacher sent me picture after picture, showing her engaged and happy. She loved it! And has loved school every day since then.
We ended up moving my son’s family in with us, building a connected cottage, and having four generations on the compound. It really does take a village to raise an autistic child.
Flash forward to age 7, Christmas. She finally figured out opening presents. Birthday, age 8, presents are really cool. As is blowing out the birthday candles. Oh, boy, do we blow out birthday candles ;-)
Age 9, an Amazon Christmas wish book arrives in the mail. She goes through it, page by page. She finds a Minnie Mouse dollhouse, a two story LEGO house. “I want this.” “I want...” is something we have worked on for years. “This” and “that” is how I distinguish what she wants, given two choices. She has loved doll houses for many years. Instead of a pre-built dollhouse this year, she gets a LEGO dollhouse. We build it together. She can look at LEGO instructions, and the picture on the front of the box, and do multi-hundred part LEGO!!
She says, “I want Christmas.” So, a week before thanksgiving (never before in our lives), a decorated Christmas tree. She says, “I want Christmas.” The lighted ceramic Christmas village is displayed and within her reach to rearrange. The Santa with the sign counting down the days until Christmas is there for her to read. (She gets math like crazy. Also killer hard puzzles. And she doesn’t start with the edges. A video of Lilly doing a 300 piece puzzle would blow your mind.) “I want Christmas.” The Christmas dvd of her favorite musical group (Celtic Thunder, if you must know! She has even seen them live, and has definite favorite members) is made available for her viewing. (She also has perfect pitch; you may not understand the words, but the melody is obvious. And after she has learned a piece, she will always sing it in that key. “Let it Snow”. “We Wish You a Merry Christmas”. It was an absolute hoot hearing her learn both parts of “Baby It’s Cold Outside.” In both the male and female octaves! A strange chant that goes, “Santa, Santa, ho, ho, ho! What a time!” We think that one was from a Christmas school presentation several years back.)
Now she is 10. There has been a huge leap in language. She says, “It’s Christmas. Open, please.” Next year, wrapped presents will not appear as early under the tree. She gets it.
Christmas has always been my favorite holiday. As a child (and teenager, and (truth be told) adult), I have never been able to keep a secret, and have given away too many gifts before Christmas. But for Lilly, I can keep a secret. To see the delight on her face, as she opens a present to find a top, a slinky, a ball, a set of LEGO. It is precious beyond compare.
Her father found a quote, a couple of years ago, that says it way better than I ever have could:
“We would never have chosen this journey, but we sure do love our tour guide.”
She is my heart. No day is really complete without a Lilly laugh. You should all be so blessed.
