As an infant, Ainslee was, in my opinion, a very easy baby. She slept great, ate great, and seemed happy and healthy. We started to worry when she wasn't crawling or walking at a normal age; she crawled and 11 months and walked at 14 months (October 12, 2011 to be exact). We chalked up the delay being due to her eyesight; she got glasses on February 6, 2010 after her then pediatrician, Dr. Collins, noticed her left eye turning in). At about 15 months, Corey and I started to notice that the few words that she did had started to diminish. We hung pictures around the house and tried to encourage her to say more but she didn't really. Still though, she seemed happy and healthy so we didn't venture into testing or early intervention services. I had my suspicions for autism, based on my background and the symptoms she was showing. In addition to her loss of language, she didn't really show an interest in others around her nor did she play with or respond to kids. She rarely played with toys. In January of 2013, I finally applied for BabyNet and had her evaluated. She was then tested and picked up and began receiving speech, OT, and PT which all took a long time coming due to the need for evaluations first. Speech came the quickest as a service. About 3-4 months in to her BabyNet services, I asked her early interventionist for a referral for an autism evaluation which she submitted. This also took FOREVER but on April 8, 2013, we drove to Columbia, Shmamma and I, to the C.A.R.E. Center for her autism evaluation. At this time, Shmamma and I knew it was autism but we had to go through the formalities for medical reasons. 2 days after the evaluation, I got the call and her diagnosis: autism. From that point on, her BabyNet services continued and her EI also started working on getting her on the fast-track PDD waiver to get ABA services when she turned 3. Long story short, ABA began after her 3rd birthday but I was not impressed. The lead therapist was bossy, pushy, and manipulative and clearly only wanted hours (hence, pay) for her and her therapists. Her therapist was sweet and meant well but had not been properly trained. Ainslee was her first kid with autism. A month in on her ABA services, it was almost time for her to start school and Shmamma had to keep her 2 weeks while I went to work and before her preschool services started so I cancelled the ABA. She did fine. August 26, 2013 was her first day of preschool and since then she has been making GREAT progress, gained important social skills, and slowly learning that she has to follow commands instead of her own agenda. ;) She is in her preschool Special Education class for half day morning, and for halfday PM, she goes to Autism Academy for ABA type discrete trial instruction (with also social skills training). We're also working potty training; she's doing AWESOME at school but is hit or miss at home.Since her time at Chukker Creek, inklings of very basic imaginative play are coming out and she is giving kisses and blossoming into a very silly little girl. On December 18, 2013 we went to our first appointment with a fantastic developmental pediatrician, Dr. Dibattisto, and she did AWESOME! She was also given a swab to send off for genetic testing, a new thing that is done for children diagnosed with ASD. The lab is supposed to contact us and let us know if we'll have to pay anything out of pocket before they do the genetic testing. If it's not too high a price, we'll surely do it.
So, it has been a journey and, yes, though I knew she had autism before the medical world knew it, hearing the diagnosis did make me cry after I hung up the phone. I'm okay with it though and, thankfully, know how to handle it seeing that my job was working with and coordinating ABT (similar to ABA) services for kids with autism for 6 years prior to me going to school to be a Special Education teacher, graduating, and having my own kid. I read every book that I can because it's my passion- I find autism fascinating. I had a full shelf off books on autism before I ever had a kid. I have probably almost filled up another shelf since Ainslee's diagnosis. To this day, me and everyone who interact with Ainslee believe her to be on the high functioning end of the autism spectrum. She's briliiant, fascinated (and obsessed) by letters, numbers, shapes, and colors. She loves music and books. She has gone from being a great eater as a baby to a picky eater now which is due mostly to sensory issues and texture. She has a few foods that she'll only eat and some foods that she loved as a baby, she won't eat now because of how they look to her. I get fruits in her no problems and I've gotten to where she'll eat sweet potatoes without them having to be stage 3 baby foods. Other veggies (to give variety), I have to give every now and then as stage 3 baby food or I can mix veggies (corn, green beans, peas, carrots) in with her favorite tomato-based pastas. She drinks V8 Fusion as her juice so that also gives her extra helpings of fruits and veggies. She won't drink from an open-top cup but does drink from a straw (though she still wants her milk WARM and in a sippy cup). She doesn't eat candy (texture thing) or ice cream (it's cold). Her utensil use is hit or miss. If she's focused and I set the food up for her either by scooping or stabbing, she'll feed herself but then hands the utensils to me rather than trying to stab or scoop herself. With prompts, she'll try, but she has really weak fine motor skills. She won't bite food so I still have to cut foods up for her (chicken nuggets, corn dog nuggets, fish sticks, PBJ sandwiches, etc) and break up some cookies or rice cakes for her in fear that she'll choke or gag when she just tries to shove the large bites into her mouth. She knows all of her alphabet, all of the letter sounds, and can count to 100, including by 10s. Some instances by 5s, and she knows the name of family members, her address, and phone number. She's also starting to read words. So, cognitively, despite what her IEP evaluation revealed due to her non-compliance or lack of participation with the testing, she is not intellectually disabled.
As I wrote yesterday, it was a bit of a frustrating day because Ainslee was such a whackadoodle and not like herself. Today she's much better and being silly. Before nap she began making her jokes and laughing about her Bubble Guppy figures. 2 of the 7 are named Nonny and Deema. She randomly held up Nonny and said "Nonny." Then she looked at me, grinned, and said "Deemy" and giggled. She did this several times, clearly amused with herself. It was super cute. This goes back to her first "joking" at dinner on Christmas Day at Gigi and Peepeyes house. She naming all of us at the table and when she got to Peepeye (Bruce), she grinned and said "Pee pee." Of course we all laughed and she did it every time. She was proud of herself and, quite frankly, we were proud of her too. Now, calling her grandpa "Pee pee" may not be the BEST thing but making a joke was a big deal for her and we knew it. She calls him Peepeye still, don't worry, but today after her "Deemy" jokings before her nap she did say "Gigi", look at me, grin, and then said "Pee pee" and fake laughed really loudly. Such a silly girl. :)
Another big thing is as she was in her room and I in the office, I heard her yell for me by name. She will usually yell for me but it's usually "Mommy! Oh, Mommy, where are you!? I don't know where Mommy is" or she'll cry, whimper, and repeat until she finds me or I call out to her. Sometimes she'll just chant, "Mommy, mommy, mommy!" like she's at a football game. Today I heard her yell "Mommy!" and wait for me to respond to her. It's the small things. I sure love the small things because as far as she goes, they're big things! :)
Last night Corey tried to light a couple small fireworks for Ainslee thinking that seeing the colors would make her happy. It was the ones that look like small cigarette-sized cylinders that you lay on the ground and light and then watch as they spin and change colors for a few seconds. The colors were not impressive to Ainslee. Nor was the loud whirring noise. Ainslee hated them and demanded to go inside. I felt bad for Corey, but at least he tried. It's okay Ainslee, Mommy hates fireworks too.
No comments:
Post a Comment