I am really bad about sharing personal stories when they happen. Here we are a few years down the road from where the story began. The story of our sweet baby Jane being diagnosed with autism.
She was born on September 15, 2011. The first few years were a battle with medical professionals. Jane stopped breathing in her sleep when she was 3 months old. The doctors brushed it off as I was just a new mom. They said I didn’t understand that baby’s breath shallow and get cold at night. That battle is a story for another time, however, I will sum it up to say she underwent two surgeries before the age of 4 (a lung biopsy and her tonsils and adenoids removed).
It wasn’t until she was 2 that we started getting concerned about her speech delay. I knew it was delayed before then, but we had other things to worry about and she hit every other developmental milestone. I just chalked it up to all the breathing problems and everything else our poor girl had going on, I figured she would just catch on.
Then when she didn’t catch on, I decided to bring her to the Child Development Center in Casper Wyoming, where I was told she was just fine. I was relieved to hear that, but, deep down I knew they were wrong.
Fast forward 2 more years. We were getting settled into our new home in Texas. She wasn’t handling the move well. She was lashing out, throwing fits, she was very aggressive. As parents, we tend to inadvertently make up excuses for our kids. Like I did, “She didn’t sleep well because it is a new house, so she is crabby.” “She is just getting adjusted to the new location.” “She misses her routine and friends.” You know the usual things a parent says in that kind of situation.
We found a pediatrician and explained to her our concerns with her speech and her behavior. The Dr. agreed her speech was very delayed and gave us a referral, thank god! But as for the behavior, she did the same thing we did chalk it up to the fact we just moved, and it was a lot of change as well as her frustration not being able to communicate.
Speech therapy was rough at first, she was so severe the therapist could not understand her so I would have to be present every appointment. This was a challenge because I had a job, finding a boss or company that understands the schedule of a mother of a delayed child is nearly impossible. Then there was the fact I had to sit there and watch her struggle over and over and not jump in… that was brutal.
It was about a year into speech the pathologist sat me down and explained to me that she thinks Jane not only has a delay, but the cause of her delay was a condition called Apraxia. Which is more of a neurological condition and she gave me this book to get more familiar with it.
Around the time we got the Apraxia diagnosis, we started to observe more aggressive and depressive behavior. She had threatened suicide multiple times, had tried to physically fight us. As a mom, it broke my heart knowing that I had lost control of my child. I felt like such a failure.
That was when I reached out to her pediatrician. I explained her behavior and her response was one I hope not many parents hear “Well, looking at her she looks exhausted. She needs more sleep, give her melatonin and make sure she has a schedule and you should be fine. If things don’t improve in a few months call me and we will discuss it farther.”
I was devastated. I was crushed. Here I am pouring my heart out to her doctor. Saying my kid wants to kill herself, that my kid is punching, kicking, biting me and herself. Expressing how I feel like a failure as a mother because I have no control whatsoever over my kid, and all I am told is she needs sleep and routine.
This appointment happened the same week I found out I was pregnant with baby E. His pregnancy was anything but easy, multiple hospital visits, we almost lost him at 28 weeks due to preterm labor which ended up as 6 weeks bed rest. All while trying to gain control back over Jane. The stress was real, and the Dr. wasn’t returning my calls or listening to our concerns.
Finally, toward the end of September 2016, I was my most brutal, non-graceful, non-humble, the ugliest of creatures self, I lost it with her Dr., we finally got a referral to a psychologist office plus a letter of release from the pediatric clinic. Am I proud of how I acted, no, honestly it is a bit embarrassing looking back… however, I would not change it, because that is what it took to get my child the care she needed. It was the true beginning of our autism story.
We set up the evaluation at the end of October 2016, because baby E was born on the 13th and the juggle of double babies had begun, but I didn’t want to put it off too long, we already waited long enough.
When we got there, we were greeted by a very friendly staff. We were informed that one of the psychologist assistants would see her today to run all the testing, then we would come back in 4 weeks for a sit down with the psychologists. In the meantime, they needed us to fill out some surveys and bring them back within a week. There was a total of 9 surveys: 3 for me, 3 for Greg (who was napping on the couch with baby E), and 3 for her daycare/preschool.
It took 90 minutes for them to complete their evaluation. I sat there exhausted and nervous watching her go from room to room, playing with the assistant, thinking she looks so normal, so happy, why can’t she be like that all the time. I started thinking where I went wrong, did I let her have too much screen time, did I allow her to eat too much junk food, did I not show her enough love.
Then I started to hear all the outside voices. I wasn’t a strict enough mother, I should have disciplined her more, I spoiled her too much, I wasn’t patient enough. Everyone’s opinions of my parenting, the words that were verbally shared with me throughout the years.
Then I looked at my husband with my new baby boy sleeping on his chest, waiting so peacefully in the office, waiting on Jane to complete her tests and evaluations. I had a thought come into my head that I wasn’t proud of, but I am going to share it because I think this isn’t said enough when a parent has one kid that is struggling and then has another one. My thought was “I hope I don’t mess you up too.” Guys that is the true power of negative words being spoken to a mother right there. You can run from them and try to brush them off, even ignore them, but they will creep up in the worst moments.
We left that day with more questions than answers. All we were told is that she was incredibly smart and that they would see us in about 4 weeks.
I handed in the surveys and let me tell you, waiting for that phone call saying they were ready to discuss her results was torcher. The hardest part of our autism story is all the waiting. Post-partum hormones, Jane’s outbursts, Greg returned to work, and all those negative voices in my head which I tried to block out with positive scriptures, quotes, and verses, but it was hard.
It was hard for Greg as well because he worked so much with an hour commute on top of his work hours. He wanted to be around more but that’s the life of a blue-collar family, I guess.
Finally, we got the call and I demanded that Greg be there. If his boss had a problem, he would have to come talk to me hahaha. I just really needed him there.
We show up and he talked to Jane for a little bit. She made eye contact and answers in short one-word responses, then zones out on her kindle for us grownups to talk. Eli was asleep in his carrier.
First, Dr. went over all the results. Her IQ is high, and she tests in the higher than/ superior to kids her age. She showed signs of survey OCD, and her anxiety and depression were also on the high side. We talked about the speech delay and her meltdowns as well as her blackouts. It was a very in-depth look at my child. It was a bit overwhelming.
Then he said the words I feared “Your daughter meets the criteria for HFASD. High Functioning Autism Spectrum Disorder it used to be known as Asperger’s Syndrome but that is no longer a term we use, now it is grouped in with Autism.”
He continued “At this time I don’t see any need for prescription intervention just some intense behavior therapy. The only downfall is right now there is a 6-month waiting list but I will see what I will work out.”
We asked our questions you know the usual ignorant ones. Can she grow out of it? What will her future be like? Why her? He was very kind and patient to answer all of them.
Then he added something that made me cry. “You are a good mom; you did NOTHING wrong.” It was the first time I was told that by a medical professional, that was the first time since she started having the meltdowns anyone told me that. That was the first time in 2 plus years I heard that.
After feeling like a failure, like I lost total control of my child, it wasn’t anything I was necessarily doing wrong. I was still a good mother.
We left that appointment and brought Jane to Day Care/Pre School. When we got back in the car to head home, I started to cry again. I told my husband I was a little worried about what is to come, a little sad, a little angry (why her she has been through so much already), I was also relieved and part of me wanted to call everyone who ever blamed it on our parenting and scream, “Ha I told you so!!!”
That was a few years ago, and at some point, I will share with you more of our autism story, what it was like the first year. Let’s just say I took a long swim in my ignorance. I thought things were going to be a certain way since that is how society talks about and preserves autism, but it was all wrong.
I don’t like to speak out too much on Jane’s behalf, but I will share things from the mom perspective, my perspective. Jane’s story is her own and maybe one day she will share it.
I can say that the day she was diagnosed changed our world. Most would think our world changed for the worst and don’t get me wrong, some days are hard. But truthfully our lives changed for the better. We are blessed to have an ASD Asperger kid.