“I love AJ…”

This has been an all-around great week. Parker had a dentist appointment on Tuesday, and tolerated a cleaning and bite-wing x-rays with minimal fuss. He received a great report from the dentist: no cavities! A lot of kids on the spectrum, or even with just sensory processing disorder (SPD) are intolerant of the routine brushing and flossing necessary for good oral health. While a lot of kids Parker’s age are beginning to brush their own teeth with minimal supervision, we still brush Parker’s teeth and floss them for him. He’s offered the opportunity to do it first himself, but he defers to us, mostly because I think it’s difficult for him to subject himself to the discomfort. He’s very orally averse, and has a sensitive gag reflex. One way to help a child with oral sensitivities is to always brush the teeth the EXACT same way every single time. For Parker, that’s upper left, middle, right, followed  by lower left, middle, right. Knowing what to expect decreases anxiety significantly. We also use a low-foam toothpaste called Carifree, which comes in grape flavor.

Parker also had a fantastic OT session with Miss Leah on Tuesday, where she excitedly reported, “This is his best session EVER!” They played a “binary numbers” snapping game that was very motivating for Parker.

Today Parker saw Miss Teresa, and midway through their session, she stopped to tell me how well he was doing. She said, “I don’t know what you have going on with him, but keep it up!” Teresa was also excited that he was more engaged with AJ, the facility therapy dog than he’s ever been, and wanted to swing with him on the platform swing.

Swinging with AJ and Miss Teresa during the clinic portion of his PT session
Giving AJ a hug

Parker also got to ride Mikey, a white horse, who happens to be Hadley’s favorite of the herd. We were outside watching the horses file into the arena and she said, “Aw, he’s cute. Hi, Mikey!”

Parker on Mikey for the on-horse half of his PT session

And if that’s not enough for one week, Parker rocked feeding therapy today with Miss Shellie! He ate veggie straws and pretzels (two “safe foods” he’d dropped), goldfish crackers (a food he will only eat at school), and three bites of apple. He also licked carrots five times. Shellie is working closely with our developmental therapist, Miss Jen, to overcome Parker’s reluctance to initiate eating. Once he gets going,  the session moves along pretty quickly, but today, for example, it took him eight minutes to eat 5 pretzel sticks. He’s not going to have an hour to eat his lunch at school, so the goal is to get him initiating his meal in a more timely manner, in addition to adding more to his list of accepted foods.

The countdown to kindergarten is on! Weeks like this give me hope that Parker will have the tools he needs to navigate the transition with success.

Vanderbilt Assessment Scale

When Parker was diagnosed as being autistic back in 2014, I was told it was highly likely that as his pragmatic speech and social anxiety improved, that he might exhibit classic ADHD behaviors. At that time, he was shy and hesitant, and tended to stay in one spot to play with letter puzzles or books.

With improvements in speech reception and expression, Parker has become quite the social butterfly. He has also developed problematic inattention to task, distractibility, and lack of focus. In 2015, after months of requiring maximum assistance in class, we made the very difficult decision to begin a non-stimulant medication. It took several months to begin to see progress. But then, little by little, the assistance needed in class decreased. Parker was able to attend to an activity, and engage actively in his learning. He expressed greater confidence, and was very proud of his new abilities to help his teachers with classroom “work.” I should mention, Parker was unbelievably fortunate to have had a remarkably low student:teacher ratio for his first and the beginning of his second year of developmental preschool. At times, there were 6 students with 3 teachers/assistants!

Parker started his second year of developmental preschool in 2016, and it got off to a rather rocky start. Our psychiatric nurse practitioner also left the practice to care for her own autistic son in July, so we were waiting to see the psychiatrist who would be taking over medication management. We struggled through until our visit with the new doctor, who we LOVE. He immediately engaged Parker’s teacher by having her fill out the Vanderbilt Assessment Scale. This is an objective way of documenting improvement or relapses in Parker’s functional ability in the classroom, and something that our previous provider had not employed. What a valuable piece of information that was! Parker’s new doctor increased his medication dose slightly, but we didn’t see the improvement we had hoped for on the subsequent rating scale.

Things were really starting to derail at school. Parker was requiring increasing assistance to stay on task, and kindergarten is getting closer. This is the time we need to be preparing for the transition to mainstream education. At our next visit with the doctor, Parker was shown to have gained a good amount of weight, and was up to 62nd percentile for weight. The psychiatrist and I looked at each other, and said simultaneously, “It might be time to try a stimulant.” One of the main side effects of stimulant medications for ADHD is a decrease in appetite. I’ve been working on an eating post, but to back up for just a minute, Parker has had issues with appetite and weight dating back to infancy. We knew it was very possible that this wouldn’t be effective, but it was a good time to try. We started with 1/5 the “normal” starting dose, and Parker showed improvement. But, this came at the cost of reduced appetite, dropping “safe foods,” and weight loss. The decision was made fairly quickly to drop the stimulant medication.

We had a meeting with Parker’s developmental therapist and teacher to discuss our options. It was at this meeting that Parker’s teacher said, “I think we need to transition to general education preschool. Now. This isn’t working.” His developmental therapist was delighted, while I was thinking, “Wait! Now?” We developed a plan to introduce Parker to his new teacher and institute daily visits to her classroom. It was fortunate that Parker had two friends in his developmental preschool class who would also be attending this class with him. The final transition would be Parker starting in the general education class following fall break. And boy, was he excited.

Fall break ended, and I put a very excited little boy on the bus at 8:30am for his first day of morning gen ed preschool. Previously, his school hours had been 12:45-4:05 (from time on the bus until time home). His new schedule would be 8:30-12:05. Things seemed to be going very well from the beginning. Parker came home brimming with excitement, and his developmental preschool teacher reported positive comments from his school occupational and physical therapists. The BIG change for me was not receiving a daily note documenting behavior. At the end of the first week, I emailed his new teacher, and she said things seemed to be going well.

Christmas break had arrived, and we had two weeks of time for celebrating with family and playing with new toys. Interestingly, during the second week of Christmas break, Parker developed a rather pervasive interest in Roman numerals. He requested a chart of Roman numerals, and proclaimed, “This is my favorite toy EVER!” He spent hours studying Roman numerals and writing them. He wrote them in chalk. He wrote them in marker. In pencil and pen and crayon and colored pencils. He also began asking to “learn things.” “I want to learn something.” He asked about the solar system. About computer coding. About the human body. He googled questions he had, and happened onto some “mywhyu” videos that explained chemistry and other higher level academia in child-friendly ways. He was elated.

While this was an exciting development, and undoubtedly a tremendous cognitive leap, it correlated with difficulty participating in his everyday activities. He was distracted and stopped playing with his toys. He also began exhibiting a dramatic increase in sensory needs. If you’re unfamiliar with sensory seeking behavior, it can “appear” to be negative behaviors. For Parker, he has an inability to remain still. He falls off of chairs from wiggling and moving. He bumps into things. Knocks things over from not being aware of his surroundings.

Christmas break ended, and Parker returned to school. I sent a Vanderbilt Behavior Assessment to gauge his classroom behavior, because at home, things were pretty rough. Again, with our experience with general ed preschool compared to developmental preschool, there’s strikingly little communication unless it’s parent initiated.  Parker’s teacher completed the scale, and the results were disheartening. He was having significant difficulties staying on task and relating with classmates. I quickly reported these findings to his developmental therapist, developmental preschool teacher, and psychiatrist. We, thankfully, scheduled a meeting for the next week.

That meeting was today. Parker’s developmental therapist, current teacher, developmental teacher, and I were present. It became evident rather quickly, that Parker was having difficulty adjusting to the lack of time with adults at school. He was used to conversing with his teachers frequently in developmental preschool. As a segue to kindergarten, the goal is for Parker to learn to initiate or participate in conversation with peers. The plan going forward is for Parker to have tasks he can complete for his teacher, as this naturally increases his ability to talk to her, and gives him a sense of importance. He will also have an assigned table in the morning to facilitate comfort and bonding with a smaller group of friends.

Snack time. This was, his teacher reported, when things reliably unraveled. His new teacher had never before had a child with food aversion. Parker, who was used to eating a snack with 5-6 other children, was suddenly faced with eating a snack with 16 other children. And in general ed preschool, the snacks are… messier. Carrots with dip, chips and salsa, cheese and crackers. Parker was accustomed to only dry snacks, and to having his own snack sent to school. Going forward, the plan will be for Parker’s developmental therapist to provide a social story regarding snack time, and that Parker should know that he is not expected to eat anything he is uncomfortable with. He will also have a small table at which he can eat with one other friend, to avoid having to be in close proximity to foods that are distressing.

And lastly, Parker is having trouble attending due to boredom. In his previous classroom, Parker had a “workbox” filled with advanced activities and reading on special interests. He could use this workbox during times of instruction that he had previously mastered. The decision was made to institute the workbox in his new classroom. His developmental preschool teacher noted that Parker exhibits attention-seeking behaviors when he is bored and wishing to speak with an adult. This was occurring frequently in situations where Parker was sitting through instruction on previously learned material. I’m going to send in some learning activities related to Parker’s current interests, and he will have time built into his schedule to work on these things.

In dealing with people, objectivity is so difficult. But in gauging progress, it’s extremely beneficial. The Vanderbilt Behavior Assessment has proven a very valuable tool for making sure Parker has what he needs to succeed in a least restrictive environment. And as Parker’s developmental therapist said, “While I’m sad for Parker, that he’s having these difficulties, it’s better that he have them now.” We can get the supports in place to ensure as smooth a transition to kindergarten as possible.

Stay tuned for an update!

 

 

 

High Functioning Autism: The Other Side

 

It’s 7am. I enter my son’s room, turn off the humidifier, turn on the fish tank light, and touch his shoulder. I tell him it’s time to get ready for hippotherapy. As he shrugs off his blankets, he mumbles something about sin notation and trigonometric functions. He lets me carry him, all 39 pounds of arms and legs, halfway down the hall before he tells me he’ll just walk. We walk into the master bathroom like every morning, and I help him onto the toilet. I had prepared his clothing the night before. I quickly slip his pajamas off and his clothing on, stopping to ask him if he’d like to wear a compression tank, or just a regular undershirt. He chooses a regular undershirt. I should have him dress independently, but I have to choose my battles. With 30 minutes until time to leave, there’s no time this morning. He looks up, his brown eyes boring into my own, and explains, with great intensity, the layers of the earth. I nod with interest. He says he is finished, stands, and I pull up the back of his pants while he manages the front.
My firstborn is 5 years old. He has high functioning autism. He appears neurotypical in many ways. He’s articulate and engaging. He loves to laugh and be silly. He loves to swing, slide, and run on the playground. He can be seen having pretend birthday parties for Mickey Mouse, and often brings an imaginary friend along on outings. He’s brilliant. Frighteningly, captivatingly brilliant. He read before the age of 2. At 3, he could identify any text font. At 4, he was learning Spanish and Chinese. At 5, his interests include trigonometry, roman numerals (to septillion), outer space, and the human body.
High-functioning autism can appear “easy” in a lot of ways. It’s garnering attention in the mainstream media, and movies and television programs include roles with HFA. But there’s another side that you don’t see. A side that often keeps me awake at night. A side that causes considerable heartache because I don’t know how to help him. A side that keeps me searching passionately for a way. For me, it’s something like this:
It’s setting an alarm every two hours at night so you can feed your 5 month old when he’s sleeping. You do this because his oral aversion is so severe, he refuses both breast and bottle when awake. It’s not leaving the house, because you don’t want to miss a nap and an opportunity to feed your child. And you do this for months, until the day he finally accepts feedings while awake. You do this so your child won’t lose weight and require a feeding tube.
It’s feeding therapy, starting at nine months, because he gags at even the sight of solid food. It’s giving your preschool child an appetite stimulant because he has no innate desire to eat. It’s having well-meaning family and friends tell you, “He’ll get hungry and eat eventually,” as you watch him lose weight and feel too weak to play. It’s blood tests to make sure he’s not ill from such a limited diet. It’s knowing the caloric content of a single goldfish cracker, both baby and full sized. (Or any cracker for that matter.) It’s hearing parents complain that their children want to eat all the time, when you’d give anything for a day when your child wanted to eat even a single meal. It’s your child not eating unless he’s at home, and only if it’s an ordinary day. It’s not eating if it’s a holiday or if there’s company. It’s stopping feeding therapy at age 4 because it is thought to be increasing his anxiety, and calling the same feeding clinic in tears at age 5 because he’s losing weight from food refusal. It’s worrying that your typical child will restrict her diet due to only seeing her brother eat the same 6 foods.
It’s a constant struggle with sensory needs and aversions. It’s purchasing $160 compression shirts you hope and pray will calm his desire for deep pressure so that he will stop bumping into peers. It’s weighted vests, compression vests, and weighted compression vests. It’s long sleeved shirts even when the weather warms, so the wind won’t “hurt (his) my skin.” It’s finding self-inflicted bite wounds on his arms when you forget. It’s spinning discs and swings and mini trampolines in your family room. It’s chewelry and saliva-soaked shirts. It’s hands in his mouth, even at age 5. It’s buying the exact same pair of shoes in increasing sizes because the sensation of a different shoe is unbearable. It’s noise cancelling headphones. It’s cutting his hair yourself in his sleep, because you can’t bear to endure the stress of a professional haircut again. Or the stares. It’s not being able to attend church services. It’s leaving grocery carts full of groceries, birthday parties, and restaurants because you know the meltdown won’t stop until you remove the source of sensory overload.
It’s crying the “ugly cry,” while your son sits next to you, seemingly unaware. It’s having to painstakingly explain what faces that are happy look like, faces that are sad, faces that are mad. It’s explaining that it’s not kind to laugh when someone is hurt and crying, over and over and over again. It’s doing these things while simultaneously being in awe of his baby sister doing these things with the ease with which one breathes.
It’s walking into a private preschool and finding your three year old restrained in a chair while the other children are at circle. It’s the realization that your child needs developmental preschool. It’s note after note sent home from developmental preschool about your child’s social difficulties. It’s children not wanting to play with your child due to his impulsiveness and inability to regulate his emotions.
It’s your three year old not being able to answer yes or no questions, though he can read an iPad manual with full comprehension. It’s your three year old writing the alphabet on the chalkboard over and over and over. And him sobbing in frustration while yelling, “that’s not the right answer!” for hours when he can’t get them to look just right. It’s elation over hearing your child speak to someone spontaneously, even if it’s a memorized script. It’s buying every toy you think might possible help engage him to play in an age appropriate manner.
It’s agonizing over medication. Medication to stimulate appetite. Medication to decrease impulsivity, medication for anxiety. It’s dietary supplements and epsom salt baths. It’s essential oils and meditation tracts and melatonin and magnesium lotion. It’s being willing to do anything… anything to help your child sleep. It’s chronic exhaustion when he doesn’t. It’s worrying that your child will flee from you in public. It’s worrying that your child will never be happy. It’s helplessness when he seems tormented by the confines of his own body. It’s seeing your child struggle as though he’s in a world who doesn’t speak his language.
It’s speech therapy. Occupational therapy. Physical therapy. Hippotherapy. It’s developmental therapy. It’s psychologists and psychiatrists and second opinions. It’s ABA or  Denver Model Therapy, or Floortime and Pivotal Response, or… It’s medicaid waivers and insurance and going out of network. It’s waiting 9 months for an appointment your desperately needed months ago. It’s praying therapies will be covered, but being willing to sacrifice if they aren’t. It’s researching like it’s your job.
It’s guilt and anguish and anxiety. Because you know it could be worse. Because, even though there have been tremendous gains, you want more. Because… what if you done this thing differently or that? It’s anguish because the very things that are intended to help him, seem to cause him such distress. It’s anxiety over kindergarten years in advance. It’s guilt over having a second child. It’s guilt because the very things your first child struggles with acutely, come so easily for your second. It’s wanting a break, but feeling too guilty to enjoy it when you get one.
But then there are also the times when the sun shines through, and these struggles are bathed in the shadow of great things. Ordinary things. Like hearing “I love you.” Sharing a toy, unprompted. A spontaneous drawing of a house. Going to the restroom by himself. Stomping in a mud puddle. Of him being just like any other ordinary, dimple-cheeked, 5 year old boy.
And there’s connecting with other parents who “get it.” Whose children only eat crunchy things the color of goldenrod. Whose children still drink from a cup meant for a toddler. Whose children chew holes in their clothing. There’s networking, and sharing, and commiseration. There’s love and acceptance. Laughter and tears. There’s not being “different.”
So while I am very thankful my son is considered high-functioning, there’s an often-times invisible force that autism exerts that is anything but easy. But my son… he is who he is. He needs me to love him unconditionally, even the difficult parts. He needs me to believe in him, to advocate for him, to gently push him outside of his comfort zone, and to continue tirelessly to help him gather the tools he will need to navigate this world.