And just like that, it’s July 28th. School starts in just over a week and I find myself wondering what parents of neurotypical kids worry about in anticipation of the new school year. I don’t want to appear to be feeling sorry for myself, I just see my concerns being vastly different between Parker and Hadley starting kindergarten. Yesterday Parker asked, “Will I be the only kid in kindergarten who studies genetics?”

Explaining bird genetics and sex designation.

Yes, honey. You’ll probably be the only one. That question made me realize how it must feel for him. He’s the same size, the same age, enjoys Paw Patrol and swimming. But Parker’s jam is learning. Learning the obscure. His language is letters and numbers and codes and sequences. I see him struggling to interact with kids in a way that makes sense to both of them. I don’t worry that he won’t be able to master letters and numbers and shapes and reading. He did those things years ago. I worry that he won’t eat or drink at lunch. I worry that he will misinterpret his body’s signals and have an accident. I worry that he won’t be able to get his shoes on or off, or that he won’t be able to get his pants pulled down and up in the restroom. I worry that a peer will make fun of him for his little-professor way of speaking. I worry that his well-meaning propensity to hug peers will be overwhelming and cause them to avoid him.  I worry that he will have a meltdown and be sent to the nurses office again because his teachers aren’t accustomed to autistic children and their sensory difficulties.

But this boy, he has a lot going for him. He has a smile that lights up the room. A laugh that rings through the house. He’s sensitive and he has a tremendous social drive. He loves hugs and kisses and snuggling and showing me all the things that speak to him- like bird and insect genetics.

He’ll never be like Hadley. And Hadley will never be like Parker. But I’m blessed and I feel undeservedly fortunate to be Mama to two such vastly different little people.

 

“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.

Crazy Coding Capers

I apologize for the lack of posts lately. An untimely fall out of bed resulted in mama having a cast for the next two weeks.

Things have been going fairly well here. We’ve made some medication changes under the direction of Parker’s psychiatrist, and the resulting behavioral effects have been positive. Parker has been focused and interested in learning about anything he can get his hands on, including coding.

He recently made a calendar page of the month of February in hexadecimal. The conversions were all done in his head.

“Hexadecimal February”

And then there are the random dry erase notes on coding written on various items…

Excess-3 Code

Though not necessarily applicable knowledge for preschool life, the repeated writing by hand has been excellent for building hand strength and endurance!

 

Developmental Therapy- Don’t Leave Home Without It!

We LOVE our developmental therapist, Ms. Jen. I’m not kidding when I say we’ve offered her our spare bedroom if she ever needs a place to live. 🙂 She’s been seeing Parker for almost two and a half years now, and I can’t imagine what life would be like without her in it.

What’s funny, is that I was initially very reluctant to consult her. She was recommended by our second occupational therapist when Parker was almost three. It felt, at the time, like I wasn’t doing something right to need a developmental therapist. I couldn’t have been more wrong. She’s been a guide, a friend, a cheerleader, an endless supply of support and encouragement, and a shoulder to cry on.

So what exactly does a developmental therapist do? It looks different depending on the child. For some, she helps develop a reliable way for the child to communicate their needs and wants. For others, it’s working on play skills. For us, it’s helping us help Parker to adapt to the constant change and challenges he’ll face as he continues to grow and mature. When he was younger, she used his love of texting and emojis to encourage potty training. Every time he used the potty successfully, he got to send Ms. Jen a text. Yes. Every single time. I’m telling you, this woman is an angel.

Currently, we’re working hard to help Parker identify and regulate his emotions in a socially appropriate manner. Parker can escalate quickly from calm to screaming and crying. For Parker, anxiety, frustration, anger, and fear can manifest in a variety of ways, and not always in the manner you would expect. Capitalizing on Parker’s love of numbers, Ms. Jen recently introduced The Incredible Five Point Scale.

Together, Parker and Ms. Jen went through a series of situations to gauge what was a source of frustration for Parker. He caught on quickly, and has been using the scale to communicate his feelings appropriately without prompting! For example, yesterday Parker spilled water in his lap on the way home from therapy. Ordinarily, this would have resulted in crying and complaining the entire drive. This time, however, he said, “Mama, my pants and shirt are wet, and it’s making me go from a 1 to a 2.”

Next week when Ms. Jen comes, we’re going to expound on the 5 point scale and talk more about what it looks and feels like when he’s at a certain level, and what he can do to self-regulate.

I’m excited to see how he continues to progress with this!

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!

 

 

 

Why Physical Therapy and Occupational Therapy for Autism? Why Hippotherapy?

 

Parker receives both physical and occupational therapies as part of his public school developmental preschool education IEP.  He participates in a 30 minute “motor group” session one day a week with his school physical therapist. His occupational therapist visits his mainstream classroom for 30 minutes a week to help him with fine motor activities and engaging with peers in an appropriate manner.  Both of these therapies are very beneficial for Parker, and something that I’m very thankful he has an opportunity to receive through the public school system. But he needs more. And his young brain is plastic and still developing. So we’ve chosen to pursue private therapies in addition, in an effort to help Parker close the developmental gap between himself and same-age peers.

Parker has been going to TherAplay since August 2015. He initially started there with just physical therapy, but after seeing the tremendous benefits, we added occupational therapy in October 2016.

If you’re not familiar with the motor difficulties autistic children (and adults) can experience, you might be wondering, “Why does he need physical therapy? Why occupational therapy?” And more specifically, “Why hippotherapy?” Wait! What IS hippotherapy?!

According to the American Hippotherapy Association, “The term hippotherapy refers to how occupational therapy, physical therapy, and speech-language pathology professionals use evidence-based practice and clinical reasoning in the purposeful manipulation of equine movement to engage sensory, neuromotor, and cognitive systems to achieve functional outcomes.”

Parker, like up to 90% of autistic children, struggles with postural instability.  His core is weak, and he has trouble coordinating the muscles needed to sustain prolonged, unsupported, upright posture. (Think sitting still in a chair, standing in line, or sitting on the floor for circle time.)This is evident in his propensity to lean and seek support when engaged in these static activities.

A 3 year old Parker leans while playing. (Children’s Museum of Indianapolis)

A horse averages 100-120 steps per minute at a working gait. In a 30 minute riding session, Parker can have up to  3,600 separate opportunities to respond to the dynamic movements of the horse’s body. During the session, Parker is seated forward, backward, sideways, on hands and knees, and standing on the horse’s back. The therapists use these varied positions to engage and strengthen particular muscle groups. An additional benefit of hippo therapy is the sensory input Parker receives. The vestibular and proprioceptive stimulation is very calming for him, and the effects last for several hours following therapy.  For each one-hour session of therapy (both physical and occupational), Parker will be on the horse for 30 minutes. The remainder of the session is spent working in the therapy clinic with his therapists.

Parker seated sideways on Fairytale for the equine portion of therapy with Miss Teresa.

For the clinic portion of Parker’s physical therapy, Parker has the unique opportunity to work with therapistTeresa Keathley and her specially trained dog (from Canine Companions for Independence).  A dog can engage a child in a way that is more playful and less like “work.” Parker can throw a ball, have races with the dog, and use the dog for support during activities requiring balance (balance beam, wobble disk, etc.). Parker struggles with motor planning, and is easily discouraged when asked to perform activities he perceives as “work.” When he’s playing with the dog, he works hard without the fear of failure.

Parker practices the balance beam under the watchful eye of Dorian, clinic therapy dog.

 

Unfortunately, Teresa’s first canine partner Dorian passed away late last year after a long battle with cancer. Everyone was pleasantly surprised when Teresa learned not long after that she would be getting another therapy dog from CCI. “AJ” had huge paws to fill, but his youthful exuberance has been a tremendous blessing. Parker loves getting to see AJ on Monday mornings.

Parker, Miss Teresa, and AJ at the TherAplay Winter party

Parker sees Miss Leah weekly for occupational therapy. I don’t remember the exact statistics on sensory dysintegration and autism, but I do remember reading once that not all people with sensory processing disorder are autistic, but all autistic people have sensory processing difficulties. Parker also struggles with hypotonia and finds fine motor tasks very difficult to complete due to lack of hand strength.

Many times, Parker will use his hands for fine motor tasks while riding the horse with Miss Leah. He thinks he’s helping his horse with a fancy new hair-do   by adorning his or her mane with hair clips, when he’s actually giving his hands and fingers an intense workout. She also helps him with mastery of tasks like putting on his clothing independently, tying shoes, snapping snaps, and zipping zippers.

Most recently, Miss Leah has been helping Parker with his sensory “diet.” A sensory diet is a regimen of specific activities to help Parker regulate his sensory needs and aversions. He tried a “sensory sock” with her recently, and will be getting one for home use. Be watching for a post on sensory strategies coming soon!

Some of you might be wondering about the cost of hippotherapy. Fortunately, most major insurance companies cover hippotherapy under physical and occupational therapies billing. This is the case for us. We pay the required copay and deductible portion as defined in our coverage. The medicaid waiver also covers these therapies. For patients without coverage, Children’s TherAplay Foundation offers scholarships, and is able to provide treatment to kids who need it with fundraising efforts and generous donations from the community.

In addition to the tremendous benefits hippotherapy has on postural stability/core strength and sensory regulation, it also benefits Parker to learn to develop close relationships with other trusted adults and animals. Prior to starting therapies at TherAplay, Parker didn’t have much interest in animals. As an animal lover, it’s heartwarming for me to see him developing bonds with them and appreciating the various ways animals can enrich our daily life.

And an added benefit for mom… I’ve met some life friends while sitting in the waiting room adjacent to the indoor arena. 🙂

 

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.