There was nothing remarkable about my pregnancy with Charly, per se, although getting there was a bit of a struggle. It took 18 months, including five months of Assisted Reproductive Therapy (ART), to finally become pregnant with her. I was very sick with a chronic illness at the time and my body seemed to have no interest in further complicating my health by becoming pregnant.
I had no interest in listening to my body’s protests. I wanted a baby. Now. Period. So I sought medical intervention and forced nature’s hand.
I like to think that there was a reason I was pulled so strongly to bring her into the world. That I was meant to be her mom.
I got pregnant in an exam room by myself, having been inseminated by a doctor I’d met twice, using a tiny catheter to deposit my husband’s washed sperm into my uterus where several eggs were waiting. I was balled up on my back with my hips elevated, holding the little fertility goddess statue for luck that countless women had held on that table before me.
I know that there is no empirical evidence that children born of ART have any higher rate of “defects” (ugh) than typically conceived children. I know this both through my own research and anecdotally, as I have many friends who have undertaken the same ART journey and have perfectly “normal” (ugh) children.
I can’t help but wonder, though, if the indiscriminate way eggs are matured in this process lent a hand in her problems.
Perhaps, had we conceived naturally, her particular egg may not have been chosen, not necessarily being among the “best and brightest” in nature’s selection process. Maybe she would have never come into being.
I like to think that there was a reason I was pulled so strongly to bring her into the world. That I was meant to be her mom.
Maybe not…but maybe.
As my fourth, she was the least complicated of all five of my pregnancies. I carried her the longest: 39 weeks and one day. I had two blood transfusions and took medications during my pregnancy to help my blood clot, but nothing that carried a known risk of having any sort of detrimental effect on her development. They were all medications that I had taken in previous pregnancies with my typically developing children. In utero, she grew on schedule, her ultrasounds were perfect, and my induced, easy labor took less than 12 hours. We arrived home within 24 hours of her uncomplicated vaginal birth.
Life was good. Very, very good
One thing I know for certain is that I am glad that her initial symptoms of autism appeared almost immediately. I read about children with regressive autism, who develop normally for the first two to four years of their lives and then, without warning, all of their milestones— their language, their social skills, their eye contact — disappear.
I am thankful that was not my experience. To me, that onset seems insidious and incomparably heartbreaking.
After my third desperate visit to the pediatrician, her doctor finally sent us to the ER to rule out scary things like meningitis and brain tumors.
I have never known a “typical” Charly. She has always been different. In retrospect, autistic. It’s just part of who she is and I can’t imagine her any other way.
The very first sign of anything being “off” was Charly’s development began around 10 weeks old. She had begun screaming, night and day, for no discernible reason. In addition, there was a vacancy in her gaze. She would actively avoid eye contact and look away and scream when people attempted to engage her.
I was no rookie and my “mom alarm” was going off so I sought help from our pediatrician. When Dr. D. told me “colic,” I immediately knew she was wrong. I’m no M.D. but one can learn from basic research that colic starts to abate at 10 weeks; it doesn’t begin then. It was a throwaway diagnosis. It was a “let’s wait and see” cop-out, which was very upsetting to me.
Charly would cry constantly and unrelentingly. And I’m not talking typical infant crying or even the supposed colic. One of my older daughters had colic and I know what that sounds like. Charly was expressing something very different.
Her cries were “Help me!” cries and “Something’s really wrong!” cries and “Please make it stop!” cries. She would clench her fists until her knuckles were white. She would bite her lips until they bled and scratch her face with her tiny hands. This went on roughly 18 hours per day for four months or so, with Charly sleeping only in one to two-hour intervals, even at night. After my third desperate visit to the pediatrician, her doctor finally sent us to the ER to rule out scary things like meningitis and brain tumors.
There was nothing. They found nothing.
And she continued to scream.
The time period stretching from roughly 10 weeks old to her second birthday was a nightmare for our family. Charly’s incessant wailing prevented us from leaving the house. Car rides were torturous. Imagine being locked in a metal box with a screaming person whom you are programmed to want to soothe, but are utterly unable to.
I was a stay-st-home mom and my house started to feel like a prison. I would strap her in her stroller just to take a walk — to get out of the house — and she would writhe and scream the entire time.
As a result, the rest of the family was under a tremendous amount of stress. My husband and I took our frustrations out on each other and every single one of us wanted out, the children included. All the fun things we had been so used to doing when it was just the four of us — spontaneous weekend trips to a neighboring state or even just the zoo, going out to dinner, biking to the park, and spending time at our extended family’s houses — were no longer possible.
We were a homebound, stress-fractured family, and remain so to this day, although to a lesser degree. We can’t go anywhere as a whole unit because, generally speaking, someone needs to stay behind with Charly.
He started working later and later to avoid coming home, knowing that when he did, I would essentially throw Charly at him and escape to my bedroom or the bathroom or the backyard for an hour…anywhere I couldn’t hear her.
I just took a 7-year-old, a 5-year-old, and a 5-month-old on a cross country trip so I could be the maid of honor in my only sister’s wedding. The journey included two 3+ hour flights, a three-hour layover each way, and a four-night hotel stay — just me and the kids. My husband stayed home with Charly.
And doing that felt like a vacation.
Our foundation was cracking. We wanted to be together and that simply wasn’t, and often still isn’t, possible.
Around six or seven months old, we found a remedy for Charly’s crying, Our family was in a bad place. My husband and I had our standards of living set to “survive” and every facet of our marriage suffered: communication, trust, support, sex — everything.
By that point, Charly had formed an abnormal attachment to me as her primary caregiver. She would take a break from screaming, as long as I held her. She literally would not let me put her down, and she would not allow anyone else to touch her.
After five, six, even seven straight hours of holding her, day after day — as she tried to burrow into my chest — I handed her off to my husband as soon as he came home from work. He would push back, knowing that she would spend the entire time with him screaming because he wasn’t me.
He started working later and later to avoid coming home, knowing that when he did, I would essentially throw Charly at him and escape to my bedroom or the bathroom or the backyard for an hour…anywhere I couldn’t hear her. He resented me for making him endure that additional stress after a long day of work, and I resented him for not being willing to give me respite after a long day of Charly.
I finally gave up trying to get him to help (a harbinger for things to come) and the dynamic became ‘Charly and me against the world’ — except that I had no desire to be her teammate. I was losing my grip on my sanity.
This is hard to admit to myself, and even harder to confess to strangers, but there were times when I would lay in bed at night and listen to her crying in her crib in the next room, tears running down my own face…and if it stopped, I’d feel the slightest sense of relief at the idea that she had succumbed to whatever unknown process was wracking her body — just so she wasn’t being tortured by it anymore.
When the crying started again, of course I felt relief, but also a shame-inducing wave of disappointment that I would have to continue to care for this perpetually miserable little person who was clearly suffering. While she couldn’t get close enough to me, I was drifting farther and farther away from her.
In an effort to make her less fixated on me, I stopped nursing her around six months old. I was having some really disturbing thoughts and I hoped that allowing someone else to take on some of the responsibility of caring for her would help stabilize my steadily declining mental health.
I weaned so I could get away, as I was well past feeling like a prisoner in both my home and my body.
Aside from my breast milk, she would eat cereal from a spoon and strained sweet potatoes. She violently refused anything else. She would thrash and fight during her meals and refused to drink from a bottle. I ceased nursing cold turkey having been advised that when she got hungry enough, she would stop resisting and take a bottle.
That was bad advice.
I went on vacation with my husband, out of the country, as we both desperately needed a break from Charly and to reconnect. The logic went that if I was around, she would hold out for me to nurse her and refuse any alternatives.
When I came back five days later, she hadn’t taken a single bottle. Not one.
My sister-in-law and mother-in-law resorted to spoon-feeding her milk for all of her meals, as she kicked and cried. Besides incessantly screaming for me for the entire five days I was away, she had also dehydrated herself with her refusal.
When we arrived home, SIL and MIL looked like they had been to war. I could hear her screaming as soon as we pulled into the garage and I was utterly devastated as my singular fear about leaving came to fruition. Now that my milk was dried up, we no longer had access to the only source of nutrition Charly would tolerate.
Preventing serious malnourishment became my main focus. Survival, for all of us, became the goal.
The “I-refuse-to-take-a-bottle-even-if-it’s-breast milk” phase continued for two months. I fed her milk through a dropper and relied on her cereal and sweet potatoes regimen to keep her nourished. Her skin started to turn orange from the sweet potatoes being her main source of nutrition. I continued to carry her all day long, and my life continued as a dizzying, exhausting struggle to prevent Charly from crying.
My older girls missed me and cried in their beds at night, with pillows over their heads to muffle Charly’s screams coming from the next room.
Charly’s special needs monopolized 90 percent of my mothering time, and it was clear my two older children were feeling the strain. Hugs were few and far between because Charly was always clinging to me, and she was not at all inclined to share me. I constantly reminded my older girls how much I loved them, but I’m sure it felt hollow and insincere since I replied, “not right now” to virtually every extra request.
A three-year-old and a six-year-old should not have to make themselves dinner or put themselves to bed, but most nights I had no other option. Their dad had disengaged and I could only do so much. I supervised well, but I didn’t “mother” well. My older girls missed me and creid in their beds at night with pillows over their heads to muffle Charly’s screams coming from the next room. And there were nights that I was too tired to go to them. I no longer read bedtime stories or rubbed their backs. On my best nights, I gave a goodnight kiss in their beds and turned out the light — and even that required me to summon every ounce of strength I had left.
Nearly all of my energy was invested in easing Charly’s suffering. And everything I did failed. As a mother, I was absolutely and completely devastated.
I took Charly to the pediatrician once again at eight months old, pleading for help. Dr. D. continued to refer to Charly’s screaming as “colic” (absurd at eight months) and took the position of “let’s wait and see”. However, she did refer Charly to Arizona’s Early Intervention program to help with feeding issues since her nutrition had become a health concern. I didn’t know it at the time, but this referral finally set us on the path to answers.
Two therapists came out to evaluate Charly for services at eight months old and they were clearly taken aback by what they saw. They evaluated her as having not only severely delayed gross motor and adaptive skills, but marked hypotonia as well. They believed that her muscle tone was low enough that she couldn’t draw milk from the bottle. She wanted to drink but was unable to.
They also noted severely delayed social skills with little eye contact, and an unusual and unemotional attachment to me as a tool to get her needs met. In addition, she had no play skills. How these deficiencies escaped both her doctor and me, I have no idea, but I presume it was because her constant crying and screaming kept me in state of urgency and I simply wasn’t attending to other areas of development. I still felt like a terrible mother.
The therapists comforted me by saying that she was a very astute problem-solver and that she had learned to compensate for her poor quality of movement before I could even notice a problem. I wouldn’t have seen these compensations (W-sitting, using inertia to roll over instead of her muscles, etc…) unless I knew what to look for. This didn’t make me feel any better.
The guilt was still emotionally crippling.
The therapists qualified her as having severe developmental delays in every category and signed her up for Physical Therapy and Occupational Therapy through the state’s Early Intervention program.
At nine months old, we began our life as we now know it with Charly.
Over the next few months, as her weekly therapies became part of our routine, Charly started to make some gains. She learned to take a bottle, which was an indescribable relief, and she also learned to sit unassisted. Her social skills, however, continued to be markedly delayed. Her constant screaming morphed into intermittent angry tantrums. She started to engage in what is known as “stimming,” but I didn’t have a word for it at the time.
I have since learned that almost all autistic children have disordered sensory systems and that they intentionally do things to stimulate their malfunctioning senses that are either hypo or hypersensitive. All babies put things in their mouths, but Charly did it habitually — and still does it to this day — for oral stimulation.
Charly spread her arms out, threw her head back…and started laughing.
Rocking motions calmed her and swinging allowed her to engage, if only briefly. I learned this was due to deficient input from her vestibular system and, once she received the input she was seeking, she could then focus outward. She stroked the sides of her body with the tips of her fingers and flapped her hands when she walked, which was usually on her toes and with an unsteady and awkward gait. Charly, I learned, is mainly hypo-sensitive and displays the behavior of a “sensory-seeker”, so these were all things she did to give her body the sensory input it was failing to register with normal activities.
It was a steep learning curve.
I still remember the first time I had a prolonged positive experience with her. We were at her physical therapy facility and she was doing Sensory Integration Therapy between PT exercises, which her therapist incorporated because, otherwise, she wouldn’t participate.
We decided to try something new and put her in one of those Chuck-E-Cheese style ball pits and her therapist, Jasmine, poured a bucket of balls over her head. Charly spread her arms out, threw her head back…and started laughing.
It was the most beautiful sound I had ever heard. I whipped around and looked at Jasmine, who had the same look of disbelief on her face that I did. I started crying uncontrollably and couldn’t stop. Jasmine, her therapist, started crying too. There was a part of me didn’t want Jasmine to try it again because the fear of loss was too great. I was afraid it wouldn’t have the same effect the second time around. But Jasmine poured the balls on Charly again — and Charly laughed, again! A big, beautiful, amazing belly-laugh. I can still hear it, clear as a bell, in my memory.
I had never heard my daughter’s voice except in cries. It was deep and raspy and primal…and so goddamn beautiful. She signed, “More! More!”, with a smile on her face that is burned into my brain. We spent the next 20 minutes — the entire remainder of the session — repeating the process of pouring balls over Charly’s head, Charly laughing, and Jasmine and I crying.
That experience unlocked something in me. In that moment, I finally connected with my daughter. I finally bonded. I’m crying as I write this because, after an entire tiny lifetime of nothing but struggle, she finally gave evidence of the only thing I ever wanted for her: she was happy.
I was going to fight for her happiness relentlessly from that point on.
She was 13 months old.
At 15 months old, Dr. D., who was now seeing her every month trying to piece together the clues of what may be happening with her, sent us to a Geneticist with some suspicions that she may be suffering from a rare genetic condition. I took her alone, since my husband had stopped showing up for anything, and she screamed the entire hour-plus car ride.
When he finished, he took off his glasses with a deep sigh, looked me in the eye, and said, “Has anyone talked to you about the possibility that your daughter is autistic?”
Once we arrived, I carried her, in full-tantrum mode, through the parking garage, down two flights of stairs, across the busy street, into the hospital, up to the third floor, and I still don’t know how I managed to fill out her forms and get everything done with the way she was behaving. I pretended to ignore the stares and deflected the dirty looks. Getting into the exam room calmed her down — I think because we were no longer around people — and that was my last moment of “not knowing” for the rest of my life.
By the time the doctor arrived, Charly was involved in repeatedly climbing on chairs and pressing buttons on the phone. She didn’t even notice when he and his student entered the room. He tried to examine her, but she was non-compliant; kicking and screaming when he approached her. Upon his retreat, she returned to pressing buttons as if he didn’t exist.
When he finished, he took off his glasses with a deep sigh, looked me in the eye, and said, “Has anyone talked to you about the possibility that your daughter is autistic?” No. They hadn’t. He said that he didn’t see any obvious signs of the genetic condition we were there to address and that we would revisit it again at age three, but, for now, I needed to get her to a Developmental Pediatrician ASAP.
I held it together all the way to the car with tunnel vision and a vague buzzing in my ears. Once I was inside the car with Charly buckled in, still screaming, I laid my head on the steering wheel and cried. I cried and cried and cried. And then I was home….and I don’t remember how I got there.
Charly was 15 and a half months old.
I was convinced that “autism” was not her problem. I had come to see autism as yet another bullshit diagnosis which would do nothing but label Charly and prevent us from finding out what was actually wrong with her. I was sure that the recent spate of autism in the United States was the result of over-diagnosis by doctors who didn’t know what else to do when shitty parents were unable to control their ill-behaved children.
In retrospect, that was an embarrassingly myopic, ignorant, and insulting viewpoint.
By that time, we had added Speech Therapy and Developmental Special Instruction to her weekly treatments, as she had not yet started to talk, nor was she playing appropriately with people or toys. She would scream if anyone aside from myself or her therapists approached her — including her sisters and her dad — and had no interest in age-appropriate play.
She was 17 months when we finally saw the Developmental Pediatrician. I went in, alone once again, committed to the idea that the new doctor would also balk at the suggestion of autism. She was certainly a critically-thinking intellectual, like myself, and would have some new ideas about where to go from here.
I was wrong.
She said that it was one of the most obvious cases of Kanner-type autism she had ever seen under the age of two and that normally she would not diagnose this young, but Charly needed very serious and very intensive help if she was going to have any chance of being functional in the future. I discussed my concerns with labeling her and was instructed to change my thinking from “What will this label do to Charly?” to “What can this label do for Charly?”
The latter is why so many parents go from doctor to doctor “chasing the diagnosis,” so to speak. In our state, kids diagnosed specifically with ‘autism’ have access to much more support and therapy than other children with less obvious developmental delays do not. While I now understand why parents seek a specific diagnosis, I was not one of those chasers. It descended upon us, and I didn’t want it. I wanted an answer and a fix.
The doctor brought us back in a week later to see the psychiatrist under a stat order for formal testing; an appointment which usually schedules about six months out. She wanted to get the data and make Charly’s diagnosis empirically obvious. I made my reluctance clear and she wanted to show me data and test scores and standard deviations that I couldn’t argue with.
After struggling and screaming through 4 hours of testing, Charly was diagnosed with autism at 18 months and three days old.
I thought that this was it. The end. My grief set in…hard and fast. My child officially had a life-long disability. At least, I thought, things couldn’t get any worse and would have to start getting better.
I was wrong — again.
Charly was 22 months old, and our lives revolved around her four days per week therapy sessions and her doctor visits. We felt alienated from friends and family because no one could understand what we were dealing with and several of them were in denial about her condition, which they now admit.
I was also six months pregnant at this point, and we had delayed telling our extended family because we didn’t think they would be supportive of our choice to have another child given everything we had been going through with Charly.
A more practical person may have chosen to terminate the pregnancy, or rather would not have gotten pregnant in the first place. I still had health issues and was literally risking my life for this new little person. But for that very reason, I chose to move forward and didn’t look back.
That being said, I didn’t expect anyone who had not walked in my shoes to understand.
The secret weighed on me and added to my plate already piled high with stress. I was physically and mentally exhausted and had a hard time keeping up with all of my kids, especially Char. She was doing okay, I suppose. Not on a typical-child scale, but in Charly terms. She would make small gains with her therapies and behaviors but then gradually regress and lose whatever skills she had acquired. This seemed to happen every few weeks.
She still threw frequent tantrums and was actually kicked out of Physical Therapy this month because of it. The therapist said that she could not work with Charly anymore because she spent the entirety of most sessions dealing with tantrums. Charly’s behaviors were counterproductive and distressing to the other children getting therapy at the center, so we were asked not to come back until her behaviors were under control.
PT had essentially given up on her but there was no way I was going to, so I researched PT exercises for hypotonia and did them with her at home. That being said, she was nonverbal with poor eye contact and poor social skills…very autistic.
Friday, October 30, 2009, after getting Charly up from bed in the morning, I witnessed Charly have a grand mal seizure.
She slept late that morning, and I woke her up to bring her downstairs — an anomaly the time. I laid her on the thick yoga mat that we had in place so that she would not injure herself during her tantrums, gave her a bottle of formula (which she drinks to this day as her main source of nutrition), and turned on the TV for her to watch as she woke up, just like every other day.
As I walked away to fetch a diaper for her, out of the corner of my eye I noticed her right hand, the one holding her bottle, starting to tremor. The following onset happened very fast before I could walk the six steps back to her. Her eyes rolled back into her head, her neck wrenched to the right, and her whole body convulsed. After a frozen moment of disbelief, I ran over and sank to the floor next to her desperately screaming, “Charly! Charly!”
I held her arms so tight that I left bruises in an attempt to keep her from shaking, which she continued to do for 20 to 30 seconds. That sounds like a short time but, when in the midst of a crisis, it feels like an eternity.
And then, as suddenly as she had started shaking, she stopped.
She stood up, stumbled around — still slightly tremoring and very disoriented — and started crying. I tried to approach her, and she wouldn’t let me come near her. She had the expression of a cornered wild animal and didn’t seem to recognize me at all.
I grabbed my “Charly’s Doctors” phone list and called her neurologist who, just three weeks prior, had warned me to be on the look-out for seizures, since 30 percent of kids with her kind of autism have them. After talking to her doctor, we were told to watch her very closely and come into the office on Monday.
Charly proceeded to fall asleep for four hours and, when she woke up, she was cranky and disoriented…but her skills had reappeared, just like they had done over and over again every few weeks for the past several months.
After an EEG a few days later, she was diagnosed with a Non-Specific Seizure Disorder and put her on anti-seizure medication. It occurred to me that she may have been having seizures for months, possibly throughout her whole life, causing irritability, failure to retain skills, and serious developmental delays. This is not a medically accurate explanation, but it was as though she would seize and her brain would “reset,” causing her behaviors to improve. As time passed and the extra electrical activity in her brain leading up to her seizure increased, so would her poor behaviors. Then the build-up would culminate in a seizure, zapping her brain back into “normalcy” and starting the cycle all over again.
But we didn’t have this information until the end of the week I’m about to speak of. In the second week of November, I honest-to-god almost gave up on her. Taxed to the hilt between caring for her and our other two girls, managing my secret, high-risk pregnancy, and the strain Charly continued to have on my marriage and pretty much all of my resources, I collapsed into a ball on the kitchen floor, crying hysterically. It had been a bad morning. A really bad morning. I could barely see through my tears. She was throwing a terrible tantrum four feet away from me on the kitchen tile, as she had been doing for the previous two hours.
During my attempt to relocate her to a safer place, she inadvertently kicked me in the stomach, which was seven very precarious months pregnant. I crawled over to the counter, clutching my injured, pregnant belly and picked up the phone to dial 9–1–1. I was sobbing so hard that I couldn’t breathe. I thought my already strained heart might fail.
I was going to tell the police to come and take Char away because I was afraid of hurting her. I really thought that I would do anything to make her stop. I turned on the phone and, at the last minute, I dialed my mom.
I wish I could remember the whole conversation and how she talked me down. I do know that she deserves some sort of medal for the way she helped me through. My words were undoubtedly indecipherable through my sobs and she recognized I was in crisis. She guided me one step at a time, “You’re okay, Amanda. Amanda, listen to me. Breathe. You’re okay. Now, get her to her crib. Zip up her crib. Now shut the door. Now go to your bed…” I followed her directions and slowly started to breathe again.
She had walked me through dragging Charly down the hall to her room by her foot, maintaining maximum distance from her thrashing. Charly has a tent on her crib, tantamount to a cage she can’t escape from, so I knew that once she was zipped inside, Charly was safe. Her needs were met, she couldn’t go anywhere, and she couldn’t hurt herself. I then crawled, bruised and beaten, emotionally and physically, into bed. I said goodbye to my mom, who called me two more times that day to ensure I was okay and proceeded to sleep for an unheard-of four straight hours.
Charly slept, too.
In retrospect, I’m so glad I didn’t make that leap. That was rock bottom for me and the next weeks finally brought the change I had been waiting two long years for.
Charly started her anti-seizure meds in the third week of November 2009 at 23 months old. After the first week, I began to see little positive changes in her, but I didn’t acknowledge it out loud. Saying it would make it real and I was terrified of the potential loss. I didn’t want to jinx it. Still, her tantrums were fewer and shorter in duration. At the end of that week, she was re-tested by the Developmental Ped, who added Mild Mental Retardation to her diagnosis and prepared us that she would likely be diagnosed with ADD in the upcoming year.
Notwithstanding that news, she started to make eye contact with me for brief snippets and also started to make eye contact with her sisters. The second week on her new meds was even better, and by the third, she began doing things that I had previously relegated to the realm of impossible. She let her oldest sister sit right next to her and would stare intently as Big Sis played. She started taking an interest in her dad and step-brother and other people aside from me. It was like she had woken up.
We had our new baby on December 16, 2009, just as Charly started consistently using her first real, meaningful word: “Daddy.” She was 24 months old.
So much has happened in these 7 months since her second birthday. Our whole family is in deep and unrelenting love with Charly. The burden of caring for her has significantly lessened with the addition of a Habilitation provider for 30 hours per week as an adjunct to her therapies. Through the state’s Department of Developmental Disabilities, we also receive 20 hours of respite care per week, which has many times saved my mental health from tipping into a rapid downward spiral. I now get regular breaks from my high-intensity parenting duties.
Charly has made significant gains in language. She has a spontaneous vocabulary of over 50 words and can repeat almost any single word that you say to her. At 28 months, I heard “Mommy” for the first time in her life. I cried, of course. At 29 months, she repeated back, “I love you” and started giving hugs and kisses, mechanical as they may be. I cried even more. Her Mild MR diagnosis dropped off as it was made clear, via her recently acquired communication skills, that she is very intelligent.
Every day — every single day — she does something that makes me laugh and smile and know that there is so much in there just waiting to come out. She has amazing gifts, including a photographic memory and hyperlexia, where she can identify letters and numbers without having ever been taught. It’s still a struggle, and in no way easy, but it’s so much better than it was. I thank any god that will listen that we didn’t give up given there were times when I toyed with doing just that.
She is still very autistic and very challenging to parent. She likes to line things up, plays only with her Barbie’s feet, and her language is primarily echolalia, repeating the last word she hears. She continues to tantrum and we still struggle to leave the house due to her fits but, with her seizures generally under control, we see a light at the end of the tunnel.
Charly is physically stunning, as many autistic children are, and smiles 70 percent of her day — a big, goofy, cheesy, amazing grin. She initiates interactions and loves to be chased and tickled. We consider ourselves lucky because she started getting help so early — much earlier than most — and she has a remarkably good chance of learning coping mechanisms so that she can function independently in the future.
And, to be clear, her prognosis could be so much worse. Her pliable little brain was phenomenally receptive to the therapies we started early on and I shudder to think of where she would be if we hadn’t gotten help for her until later.
I am starting to believe that things are going to be okay (whatever that means), and while she may never be a “typical” kiddo, she is a joy to have in our family.
I wouldn’t trade her for any “typical” kid in the world.
Charly is 11 years old now and doing amazingly well. Here’s another story about autism that you might enjoy. Thanks for reading. -AJ