Last Friday we got our Autism diagnosis for Harvie. Now, we have full plan in place with a team of amazing people to help Harvie become her best self, whatever that may be. The initial IEP meeting very long, but very productive. There were thirteen people in the meeting, in person and virtually. We discussed Harvie’s many strengths, her areas of recent growth (credit to Soda City Peace of Mind, Team Therapy, Keekie, Mommy and Daddy), and areas of concern that will be our focus. Currently, speech is a major concern because although she has a vast vocabulary for a child her age, she doesn’t use it pragmatically to communicate. She also has some challenges with fine motor skills and some executive functioning.
Beginning Monday, she will receive thirty minutes of resource with a special ed teacher at Brennan. That will be in addition to the hour Monday through Thursday that she works with Mrs. Mary at Peace of Mind. She will have Speech therapy twice on Tuesdays, once at 8:00 with Ms. Kathleen at Team Therapy and then again for 30 thirty minutes with Mrs. Ross at Brennan. On Wednesdays, she has occupational therapy with Ms. Tonya at Team Therapy. She will also receive thirty minutes with Mrs. Penland at Brennan, but we’re still working the time and day for that one. On Thursdays she has PT with Ms. Sophie at Team Therapy to focus on her in-toeing (pigeon toes) and “W” sitting. She doesn’t not warrant services in PT from Richland One because she can ambulate safely on school property. Friday, she just gets to chill with Keekie, my sister, Kelli, all day!
Her goals are attainable, and as her OT evaluator said, Harvie is so smart that we will probably have to revisit more than once a year to set new ones. Since she started her sessions at Team Therapy and her work with Peace of Mind, she has made huge improvements. Her outbursts fewer and shorter. She’s using multi-word sentences sometimes. She is sitting for lessons more readily. She is greeting people she knows without prompts, “Hi, Mommy!” “Hi, Kristie!” Our current “wants” for her as parents are to be able to clothe herself (she can disrobe in under 3 seconds, so I think this is more of a compliance than ability issue), color/write more frequently, sit for lessons without argument or interruptions, try new foods more regularly, communicate verbally more effectively, and comply without tantruming. She is working hard at each of her current sessions, so after some transition adjustments, we are looking forward to more growth with these additional caregivers in her life.
Because Harvie began reading at the age of two, she is technically considered a savant, which is kinda cool. This ability is a great tool for her caregivers because she can read and comprehend what they are asking or telling. We employ a notecard strategy in all areas. It is especially helpful to capture her attention. I just say, “I have a note!” and she comes over to read it. It really is pretty amazing every time you see this tiny girl reading cursive or upside down, reading multisyllabic words. It is a hindrance at the grocery stores and Target as she can read where the candy and toys are. I have to be pretty circuitous in my trek through the stores!
I am sharing as much as I can with everyone so people who have kids they aren’t sure about or might feel some sort of shame or guilt over won’t feel so discouraged. I told someone the other day that my daughter had just been diagnoses as autistic, and she said, “Oh, I’m sorry.” I said, “Why? There’s nothing to be sorry about.” It’s just a fact and now we do all the things we can to make her journey in life as uncomplicated as we can. She is very high-functioning and with all of the early interventions everyone is confident that she’ll make gains to surpass her peers. Personally, I feel like the language issues are the biggest hindrances. Also, getting through the threes! She has a lot of personality; she is silly and funny. She loves a good snuggle. Her favorite “show” to watch is me playing Trivia Quest or Triviaverse on Netflix. Little weirdo. She loves music, so we’d really like to get her behavior and compliance to a point where she’ll follow instructions and listen so that she can take piano lessons in a few years, and maybe play soccer. She LOVES being outside and anything to do with the water. She seems to have gotten over the waterboarding after the laundry pod incident, so we’d really love to get her more into swimming again.
We are very open to discussing Harvie with other parents who might have questions, and we are open to hearing others’ stories. If you see an interesting article about autism, forward it or tag us! What we aren’t open to is someone with no experience, expertise, education, or position telling us what we “should do”. Harvie’s various sessions aren’t cheap, but she is priceless to us, and we’ll do whatever it takes at whatever cost. She is our whole world. I think about how her life could be so different in the wrong people had been her parents. I am so humbled and overjoyed that God or fate or the Universe saw fit to bless us with this great gift who is hard-headed, hilarious, kind, willful, and brilliant because we were the only parents for her. Tabby, our birth mom, after we met used to always say, “Kim, this is y’all’s baby. I really think now that I found you, God (and I am not a big religious person mind you) sent this baby for me to carry for you because you can’t. I know you’re her mom”. Now, I am sure part of thinking that was making her already unimaginably hard decision a bit easier for her, but I do think she believed it, and I do, too.
In addition to these amazing people, the rest of Harvie’s village always steps up. Her Aunt Keekie is her number 1 supporter after her mom and dad. My sister is always there for Harvie, and Harvie ADORES her. Keekie’s daughter, Claire, is also a babysitter if Keekie is unavailable or we want someone to watch Harvie at our house. There are only a handful of people we feel comfortable leaving Harvie with because we trust that they know her well enough to understand her needs. My friends, Amy Jo and Jill are both moms, both patient, and both loving. I would trust Harvie in their care completely. Her godmother, Annie, is another. Unfortunately, she lives out of town, and we don’t see her as often as we’d like. It’s a small circle, but it’s 100% reliable. With her care professionals and her “framily”, we have no doubts that Harvie will excel.
If you want to know how you can help us or others, do this:
When you see a mom in the grocery store and her child is throwing a fit, offer her some grace. Don’t judge her. Don’t judge that child. Sometimes, there are underlying reasons.
Don’t make assumptions about children’s abilities.
Learn about autism, especially if someone you spend a lot of time with is autistic. Literally every autistic person is different from the next. They are so unique and specific!
When you see child in his or her pajamas, or superman costume or princess dress, just know that might be the only way the parents were able to leave the house that day.
If your friends’ daughter only wants to eat waffles for every meal, don’t judge. So did Eleven in Stranger Things, and look what she can do.
If you see an older toddler with a pacifier, keep your opinions to yourself. Be glad they have it otherwise you’d be witnessing a meltdown in Aisle 4.
Understand that how we make decisions now is completely impacted by what is best for her – can’t make brunch, can’t take her to a movie, gotta change jobs, gotta work extra jobs. ALL decisions are about her.
Incoherent Ramblings 