Meet MiKynna, a spunky 5 year old girl that was diagnosed with autism when she was 15 months old. She is also my daughter and the original inspiration for this project. You can read last year’s story on her HERE. She likes to make goofy faces when I try to take her photos, so that is what I share with everyone, because that is part of her.
In the past year MiKynna has started physical therapy to start working on some gross motor deficits, balance and stability issues. She recently started wearing SMO's to help with those issues as well. So far she is doing well with them and tolerating them. Over the summer, ABA worked with her on her fear of bugs and they got her to the point where she could tolerate sharing outside space with them without melting down and that was HUGE. She has made incredible gains, although as she gets older we do see some of the delays and differences a little more clearly. In mid summer last year she started having debilitating migraines, rapidly lost weight, her balance got worse, and her behaviors increased. After consulting with her pediatrician and neurologist, she got put on a medication to prevent migraines which has helped tremendously. She gained back the weight she lost and then some, the migraines are minimal, and her balance has improved. She also had her adenoid and tonsils out and has slept better and had less asthma attacks.
MiKynna is incredibly funny. She has no filter and some of the things that come out of her mind are hilarious. She cares deeply about the people close to her. MiKynna current obsession is drawing and coloring and she is quite creative with it. It is the one thing she could sit and do for hours a day, and she has. She also enjoys watching anime and different videos on YouTube. MiKynna is smart and picks up on things that she likes very quickly. She works hard and takes pride in her work. MiKynna has a great memory for things she is interested in and can tell us in depth details about those things. She will even let me know if I am driving the "wrong" way to a familiar destination.
MiKynna struggles with social thinking. She doesn't really carry on conversations, but instead will tell stories. She is working hard on recognizing different emotions within herself as well as others, but it is still difficult for her in the moment. Although she can keep herself together quite well while out in public, she frequently has meltdowns and behaviors as soon as she gets home or shortly after. She gets physically aggressive with her brothers, well, really one of them in particular, and lies about it regularly, blaming them for making her hurt them. She has the tendency to be very bossy and angers very easily. MiKynna has a very hard time being told "no" and has very little patience. Although we know she is capable of following directions, she often won't when it is an activity that she doesn't prefer. Her diet has improved from years past, but she still is particular about what she will or will not eat.
One of the highlights of raising children with autism has been learning to appreciate the small things and not take things for granted. Sometimes MiKynna hits inchstones not milestones, but those are worth celebrating.
The biggest challenge I have had while raising MiKynna has been the fight for school support. MiKynna does an amazing job of holding herself together for short periods of time, which she managed to do during a multiple week in class evaluation for ECSE, then completely meltdown as soon as she gets home. Because of how well she did during the evaluation, she did not qualify for an IEP through the schools for pre-kindergarten, although when she starts kindergarten in the fall she may need extra supports, especially with an all day class.
MiKynna says "I have autism. I like it. And I am also shy of new people. My brain is different."
If you would like to help an autistic individual and their family, remember to include them. Invite them to things, even if they always have to say they can't attend. Keep inviting them. Whether it is a family function, birthday parties, a play date, or a night out with the parents. Some aspects of their life may be difficult for you to understand, especially if you aren't seeing it everyday, so don't ever assume they aren't joining in on the fun because they don't want to. Even if their child has handled the same situation well in the past from your perspective, it doesn't mean that the family wasn't dealing with meltdowns for hours, or even days, later because their child held themselves together well in the moment. Or maybe they just don't have the energy to deal with keeping a constant eye on them in an unfamiliar space. Whatever the reason, whether they tell you or not, continue to reach out and invite them.
My biggest advice for parent's of children recently diagnosed with autism is to build your village. Find local support. Almost everywhere has some type of Facebook group dedicated to autism in the area. In the Bismarck and Mandan area I highly recommend BisMan Autism Families. I was fortunate enough to find this group immediately after MiKynna's diagnosis and have met the most amazing people. I have made amazing, lasting friendships from people that understand our situation, have laughed with me, and cried with me. They have pointed me in the right direction for services and resources. They have allowed me to lean on them when I can stand straight. They have helped me advocate and taught me how to navigate the different agencies.
In addition to BMAF, I am incredibly grateful to so many people in our lives that have supported us on our journey thus far. Our pediatrician and her nurses for being understanding, compassionate, and proactive when it comes to MiKynna. Having a medical team that doesn't judge and helps find solutions has been incredible. Too often I hear of doctors that don't take parents concerns seriously and I feel very fortunate to not have that experience. To the staff at Red Door Pediatric Therapy that have helped MiKynna accomplish so much. They have been amazing to work with and, with their help, she has reached goals that, at one time, I thought may never come. To Poppy's Promise who have also helped MiKynna move in a forward direction with so many things. And of course, last but never least, our extended family who completely accept her the way she is. Who know that she can be unpredictable and sometimes hard to handle, but still are there for us, helping when they can. Making sure she knows she is loved.