Today my heart is bursting with emotions as I watched Ethan get on the bus and drive away to his first day of Kindergarten. Not a developmental kindergarten, but general ed, public school kindergarten. It has taken a lot of prep getting to today. Many visuals about what is going to happen, TV shows about the first day of school, books about emotions and practice on how a conversation might go. I feel anxious about what his day will look like although I didn’t dare show it this morning to avoid spiking his anxiety. He was excited, which makes me excited! Many details went into this day – deciding if gen ed school is right for him or if he needs another year of developmental preschool or even a specialized kindergarten. Talking through his progress with his past preschool director and his therapists to decide if he is ready for the gen ed bus or still in need of the special needs bus. Will I be holding him back if I put him on the special needs bus or throwing him to the wolves if I put him on the gen ed bus? He marched up the stairs on the gen ed bus, said hello to the driver, sat in the seat she assigned and waved to us through the window as they drove off. My heart ached! What if the teacher doesn’t understand what he’s asking or if he doesn’t understand what is being asked of him? What if he gets into a scene of Peter Pan and the other kids as his table ask him what the heck he’s talking about? (This is called Scripting and is very prevalent in children on the autism spectrum. They may recite lines from movies, books, commercials when they feel nervous or excited – a form of stimming. Currently, we are in scenes from Peter Pan). What if he wants to join the kids playing tag on the playground but doesn’t understand the rules and gets made fun of? Will the fire alarm go off and set him into a full blown meltdown? I am trying to enjoy the quiet and appreciate the fact that he is in school, in person during this pandemic and at the same time, I am counting down the minutes to when that bus pulls up and drops him off in our driveway where he feels safe and free to jibber, script, and stim all he needs. His behavioral specialist who first diagnosed him at age 3 warned me at his appointment just this past week that he will most likely hold it all in at school and come home and just explode with his behaviors. I’m ready. I just want to hold him – allow him to pinch me all he needs and even get into a scene with him, heck, I’ll play Captain Hook! I know these first days of school are hard on all parents – that is for sure! As I’ve mentioned before, I am involved in quite a few groups on Facebook for parents of kids with special needs or even more specific moms of children with high functioning autism and the posts are all repetitive with the same concerns I have. To all of you moms and dads, I’m praying for peace upon you on these first days – just remember they are God’s children and we are simply here to guide them as parents the best way we can – YOU ARE DOING A GOOD JOB!
Our Journey Begins
“Tell me more.” Those three words were the beginning of this journey of life with an autism diagnosis. We were at my son’s three year wellness check. We were wrapping up, no concerns as Ethan always met his milestones, rolled over at 4 months sat up at 7 months, walked the week he turned one. We did mention he was still saying one to two word phrases – our pediatrician suggested we reach out to first steps to come and do an evaluation. We did and they said it just seemed like he needed a little prompting but nothing to be too concerned about. But as we were gathering our things we were laughing about how Ethan said “happy meal!” My husband casually said “he sure likes things a certain way!” Our pediatrician said, “tell me more.” We looked at each other, a bit puzzled by the question and my husband went on, explaining how he has to have the same routine at bedtime, we brush teeth, gather our things and run up the stairs, his boo boo in hand (his lovey) and have the same songs, books, way of giving kiss and saying our prayer then off to bed. He asked what would happen if we did it different and with no hesitation, we said, “Well, that would be a problem!” Ten minutes later we were handed a script to see a behavioral specialist. We were annoyed, seriously? So what, he likes his routine! Ethan is our first, so we really had nothing else to compare his behavior. We begrudgingly made the appointment. I remember thinking of calling it off, we had no reason to be there, Ethan was fine! We arrived at the Peyton Manning Children’s Hospital. I was prepared with the forms that we were asked to fill out with questions that made no sense to me. Does my child get upset if I change plans for the day? Well of course! He’s 3! Does he stare intensely at certain toys? Yes! He LOVES excavators! We were there for 20 minutes. She watched him play, asked us questions, tried to converse with him, then excused herself. She said she wasn’t quite ready to make a diagnosis to come back in three months. In those three months I became more conscious of the things I saw in the evaluation. Yes, he did intensely stare at his excavators as they were all lined up in a perfect row. Yes, he has meltdowns if things are not as planned. No, he doesn’t pretend play but can recite The Lion King beginning to end. We went back to Dr. Vora three months later. She talked more, watched him play, asked the questions, excused herself then came back and said “at this time I am going to diagnose Ethan with autism spectrum disorder.” She handed us a book about autism, suggested therapy and sent us on our way. We were in complete shock. We walked out and I remember feeling numb. What does this mean? Will he ever complete school? Will he have friends? Will he live with us forever? We were shocked and we were mad! How can she make a diagnosis in 20 minutes? Who is she to act like she knows him better than we do? My mind was racing and it hasn’t stopped. That was two years ago and the beginning of our journey of life with autism…….
He’ll Eat If He’s Hungry
I cannot tell you how many times I have heard that phrase. Many children go through phases of “picky eating.” We heard this so many times. Ethan used to eat everything. Then it seemed like one day he was DONE. I tried to keep pushing as a mother often does, I just wanted to see my child eat so I would feed him what I knew he would eat. He gradually moved to foods with certain textures. Crunchy was his thing (still is). He gagged if anything was too soft. I remember one time he gagged just watching me dip a piece of French bread into my soup. We first brought it up to the doctor and he suggested we keep feeding him what we eat but just ensure that we offer something on his plate that we know he will eat. He started eating only that item then would be “all done (signing).” The tricks just would not work. We decided to try feeding therapy. Ethan was just over three. They walked us into a room with concrete walls and a table and said ok, give him his lunch. I gave him his norm – PB&J, veggie straws and apple slices. He did not want to eat – he was so uncomfortable. The therapist tried playing with him and talking about his meal. He finally relented and ate the darn sandwich with tears in his eyes. We tried again the next week with the same lunch and one new item. He was freaking out – a HUGE meltdown. I knew once we got to that point there was nothing he was going to try. He just kept saying “Mommy, Ethan go home!” it was heartbreaking and very expensive! We went back to the pediatrician. We realized this was not just a preference thing, it was about regimen. This is very common with kids with ASD – it is the basis of ASD. Routine, regimen, knowing what is next. We have noticed during times of uncertainty or what I call his high anxiety times, the one thing that seemed to keep him calm was knowing his meal at night – chicken fries, sweet potatoes, vegetables, pineapple. I remember one time hearing him just saying it repeatedly. I think it may have been when we were moving. We lived with mom for almost a year between houses and I think he got used to that! What little boy wouldn’t love living with his Nanny? I remember my Grandma lived with us for a short time and it was a time I will never forget. Needless to say, he was anxious when we not only moved into a new house in a new town, but also moved 2 hours away from Nanny. His anxiety was so high – I would say about as high as it has been over the last 8 weeks. He was so confused about the COVID-19 stay-at-home order. We just started getting into the groove of his new schedule in a new town – preschool five days a week, therapy on Wednesdays, then the chiropractor after that. Pizza shop was on Fridays, donut shop down the street Saturday mornings, then church on Sunday. Then, all of the sudden, NOTHING! No school, no therapy, no play dates, no going to a restaurant, no church, no seeing Nanny, nothing! I know, this has hit many kids in a very hard way, but with a kid who functions on routine, this has been like being hit head on by a Mack truck. He will not eat much at all. He is down to just a few things and they are getting so specific. He can spot an Aldi chicken fry from a Tyson chicken fry, and don’t you dare put a Tyson chicken fry on his plate!! Go gluten free they say. Are you kidding? Of course, I would love to put him on Paleo knowing it could help his behaviors, but that would also leave his diet to ummmmm, 2 things? This kid would rather starve himself than eat a piece of meat that is not shaped like a French fry and rolled with cheap breading, “10 please!” EVERY.SINGLE.NIGHT. Therapists suggest starting by putting one item on his plate just to get him used to tolerating it. He does not tolerate it! His dinner plate cannot be out of order, so for now I put everything I cook for the rest of us into serving bowls on the table. That is about as close as I can get to putting a new food item on his plate. It makes for a lot of dishes at the end of dinner and a lot of frustration. We will not give up though; we are revisiting feeding therapy and continue to talk about nutrition and trying new foods. I just pray that one day he will decide to pick up a piece of something out of his norm to realize he likes it! One takeaway – I know I am not the only one dealing with this. I have very good friends who have children with feeding issues and can I just suggest, please do not share your suggestions unless they are positive. If I take the “he’ll eat if he’s hungry” idea he will just not eat. If I bribe him, he will try food and gag it up. If I threaten him, he will meltdown, then gag it up. So yes, I feed my child the same thing every night because I know it calms him and I know it is a sure thing that he will eat. Judge if you must, but what really helps moms of kids with special needs is support. Remember, let’s lift each other up – encourage rather than judge, show compassion rather than comparison. Thx!
Helping ASD children understand COVID-19
I find social stories work best for Ethan to understand a situation, especially something that is very difficult to understand such as the current COVID-19 pandemic. I came across this one from The Autism Educator and he has asked to go through it multiple times. He now seems to grasp why we can’t do the things we used to do such as go to school or go to the playground. His response is often “oh yes, because of coronavirus?” This too shall pass, bud!
Life At An Angle 