Musings of a mom… about high functioning autism and life.
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?”
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 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.
And then there are the random dry erase notes on coding written on various items…
Though not necessarily applicable knowledge for preschool life, the repeated writing by hand has been excellent for building hand strength and endurance!
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!
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 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.
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.
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 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. 🙂
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.