Meet MiKynna, a spunky 4 year old that was diagnosed with autism at 15 months old. She is my daughter and was the inspiration for this project, all because I heard more times than is necessary "well, she doesn't look autistic." I hope that this project shows that autism doesn't have a look. Also, you may notice that she is making funny faces in, well, pretty much all of the photos. Instead of retaking them, I decided to leave them for all the other parents involved in the project. See? Your kid did great! Yes, these were the best from my mini session with my daughter.
MiKynna had a few words before one: dada, mama, nigh-nigh, bye-bye, but she seemed to have lost them by the time we had gone in for her 1 year check up. She was enthralled with light up toys and would stare at them close up to her face. MiKynna didn't play with toys in an age appropriate way, but instead just carried them around or chewed on them. She could sit through an entire full length movie, unmoving and completely absorbed with what was on the screen. MiKynna would not sleep anywhere but her crib, with the exception of her carseat when we were on a long road trip. She doesn't sleep on the couch, floor, in someone's arms, like most toddlers. MiKynna didn't acknowledge her sister's presence at all, it was like she would just look through her. She wouldn't show any affection at all.
At 14 months we had gone in to check her ears for a possible ear infection, while chatting with the nurse, MiKynna was babbling. She made this weird noise, “doi, doi, doi” and the nurse commented on how cute it was, that she was talking to us. I offhandedly remarked, “well, it’s the only talking she does, so I guess I will take it.” The nurse’s face went suddenly serious and asked me to elaborate. I told her that she doesn’t talk real words, at all. She asked “not even mama? Or dada?” I told her no, that she may say those, but not directed at anyone and more as a babble with other random baby sounds. She asked if MiKynna is pointing at things, particularly things she wants. I, again, responded with no. If she wants something, she cries, leaving me to guess what it is. The nurse asked me to describe anything about her I noticed that seemed different or unusual compared to my other children. The nurse then told me to sit there, she had some paperwork she wanted me to fill out. She left the room and came back with a sheet of paper that changed the course of our lives. A toddler Autism checklist (formally known as an M-CHAT). Based on the results of that, our pediatrician immediately put in a referral for a child psychologist.
MiKynna is incredibly funny. Although I am not sure it is all intentional, but she says some hilarious things. Part of that is having no filter and just saying everything that pops into her head. She has become very verbal with an extensive vocabulary. MiKynna has a way of brightening everyone's day around her and making them happy. She feels deeply and has incredible remorse if she feels she hurt someone, although she may not always recognize that she hurt them. She loves to draw, play outside, play with dolls re-creating YouTube videos she has seen, watch her favorite shows, which seem to go on a month-long or more rotation, currently Octonauts. She likes to boss her siblings around and every time I leave the room she asks "can I be in charge?". She has an incredible memory for things, and will bring up a memory of something that happened a year ago or repeat an entire episode of a show she watched.
MiKynna struggles with containing her energy. She is always on the move and very rarely sits still. She has a hard time regulating her emotions and has meltdowns over, seemingly, little things. When she is upset, she throws things, hits, kicks and slams doors. MiKynna still has a hard time with certain foods, but she is getting much better. She can't handle bright lights very well, and takes time to adjust to them. She hates getting her hair combed most the time, so if you see her around, 9 times out of 10 she will have a big knot on the back of her hair. She is a very restless sleeper and thrashes around in her sleep, semi-waking up often, but has learned to soothe herself back to sleep the majority of the time. She is not potty trained anymore, she was last year, but regressed after major changes in her life. MiKynna requires routine and has a hard time when things change suddenly, so we do our best to give her multiple verbal cues when there is change. She has a hard time transitioning to new things until they become part of the routine. She has no sense of personal space, at least in our house, although she shies away from those she doesn't know.
The hardest part for us is that MiKynna, like MANY girls on the spectrum, adapts well to her peers. She mimics them, their mannerisms, their play. She knows how to mask her autism throughout the day, just to come home and meltdown or continuously stim. This may not seem like it would be a bad thing, but when it comes to getting certain services, it makes it a battle because they wouldn't see her struggles in the hour she is there for a screening. Girls are diagnosed, on average, two years later than boys with autism because girls have the tendency to present symptoms differently than boys. For example: girls' obsessions could be dolls or unicorns and it is seen as a gender norm and disregarded. Honestly, we lucked out with an amazing team of doctors who saw the signs and worked swiftly to get MiKynna the crucial early intervention she needed. Without them taking the "red flags" seriously and deciding to do something, I'm not sure where we would be.
I am grateful to the village I have found in BisMan Autism Families. The friendship, support, shoulder to cry on, cheering squad. I love having them to turn to when I run out of ideas or need someone to lean on. I have made friendships that go beyond having this one little common thread, that I know will last a lifetime.
I am also incredibly grateful for our pediatrician and her nurse, who never act like I am an overbearing crazy mom when I think something is wrong and are more than willing to hear me out and help come up with suggestions, solutions, and referrals when necessary. It makes life a little easier knowing that the primary medical provider in your child's life is truly part of the team.
And of course, there is no way that MiKynna would have made the progress she has without the amazing staff at Red Door Pediatric Therapy. Those women are phenomenal. They work with her and are caring, understanding and innovative when things don't go "by the book". Their slogan is "Unlocking Potential" and I truly feel they have done that with MiKynna. I could probably write and entire blog about how much I love them.
Last, but certainly not least, we are very fortunate to have an amazingly supportive and understanding family. They help work with MiKynna on target skills, understand that she is a little different and quirky and completely accept her for who she is. They don't give me a hard time for not being able to participate in everything and are more than willing to schedule things around her needs. Honestly, neither her or I would be where we are without them.