“When I found out my third baby was going to be a girl, I was really excited. I had two boys already and was curious how adding a little girl into the mix was going to be. I thought, and hoped, that maybe my girl wouldn’t have as many challenges as my boys had. I really wanted her to be different. Normal.
Our Family History
My boys, Nicholas and Daniel, were almost 2 years old and 9 months, respectively, when I got pregnant with Grace. Nicholas was a really sensitive baby and was very delayed developmentally. There was something different about him right from the start. He was born early at 35 weeks and stayed in the NICU for nearly two months, which is where they found he had swallowing issues. He was diagnosed with silent aspiration and given a feeding tube when he was seven weeks old.
Daniel was born just 14 months after Nicholas. We already knew Daniel would have some problems after he was born. At 16 weeks in the womb, they found out that he would have clubfoot. Then, they saw just one kidney at 35 weeks gestation. He was immediately diagnosed with VACTERL Association after birth, a condition with various anomalies that affects multiple body parts. He stayed in the NICU for four weeks.
I had a really good pregnancy with Grace. They didn’t find any anomalies when she was in the womb, and she came on my scheduled due date. Even after she was taken to the NICU immediately after birth for swallowing amniotic fluid, I still had hope.
Because of our family history, we had Grace immediately tested for several things to rule out any congenital malformations. Within the first few days of her life, she had an echo on her heart, an abdominal ultrasound, an MRI on her brain, and genetics testing, and everything came back normal. (The genetic tests were a panel of only about 200 genes).
But then Grace had swallowing issues. She didn’t like loud noises and was very sensitive to touch. She had a lot of separation anxiety. She didn’t talk and was delayed in everything. Exactly like her brother Nicholas.
Like Brother Like Sister
At this point, Nicholas was 3 years old and still wasn’t walking on his own. He received all his nutrition through his G-tube and had absolutely no interest in food at all. He was completely non-verbal. Nicholas was doing a lot of therapy to help with his sensitivities and gross motor skills. He was diagnosed with autism just after he turned 3.
Grace and Nicholas did have some differences. She ate applesauce and liked playing with food. She liked to play in water. She started to say a handful of words intentionally. She began walking on her own a little after she turned 2 years old. To me, the differences outweighed the similarities. I truly thought she was just delayed and possibly had anxiety.
Grace was diagnosed with autism spectrum disorder when she was 2.5 years old. She was given a level 3 diagnosis. There are three levels: level one requires support, level two requires substantial support, and level three requires very substantial support.
Nicholas was diagnosed at level 3 a few years before, which we had understood since he was a baby. It was clear Nicholas would need a lot of support. But we felt Grace was a little ahead of Nicholas. We were shocked that she’s level 3, which is the hardest part about her diagnosis.
That was our first mistake. Comparing a boy with autism to a girl with autism. Comparing in general. Autism presents differently in girls. Sometimes girls are even misdiagnosed, because they don’t fit the stereotype, or mask it differently than boys. More than four boys for every one girl are diagnosed with autism.
I felt dumb for not seeing it. I now understand how autism presents differently in girls. I was sad about not knowing what was going on with her. For assuming that she didn’t need as much help as I thought. And I felt really bad that I couldn’t give her the support she needed.
I saw a huge regression with Grace a few months before she was diagnosed. It was the beginning of the pandemic in 2020, and we were doing therapy over telehealth. She couldn’t do it. She didn’t like the phone or computer. She’d run away; we couldn’t get anything done.
The diagnosis helped get our therapists back in the home, which was a relief.
The mom guilt came over me. Did I pay enough attention to her? Did I let her watch too much TV that summer? Did I play with her enough? We were home a lot that year, mostly just trying to survive the long days with each other during the pandemic. The signs were right in front of me, I was just oblivious.
Something I took away from the evaluation is that the levels of autism aren’t about ‘how much autism’ the person has. That’s not a thing. It’s about the amount of support they need to live their life. They said if someone were to come into our home, they wouldn’t know how to care for Grace. I do: because I’m her mom, I know exactly what she needs. But that’s how they determine the level.
Another thing I learned is that a big part of autism is getting overwhelmed really easily. I thought she had anxiety by itself, but it can also be part of autism.
The Third Child
After Grace’s diagnosis, I started to wonder about Daniel. His disabilities were more physical, having to endure 8 surgeries in his first two years of life. He was more independent than his siblings though; he walked, talked, ate food by mouth, and could help me with small tasks.
He was a little hyperactive and had trouble focusing, which made me believe he had ADHD. But he also had some big emotional outbursts that lasted a long time. He cried all the time as a baby. I attributed that to the cast on his leg from his clubfoot. I thought he was just in pain.
But as he got older, the crying never dwindled. He never listened, and following directions was difficult. He was constantly getting in trouble, and couldn’t share his toys or play with his siblings. He’d get frustrated easily and didn’t like asking for help, which then led to throwing things and self-injury. He was impulsive and didn’t think before acting or talking.
I decided to get Daniel evaluated as well just to see. We had been trying for years to help him to no avail. Something needed to change. For the safety of his siblings, he needed that extra support.
Daniel was diagnosed with autism just four months after Grace at 4 years old. A completely different part of the spectrum than his siblings. The more ‘higher functioning’ side. Except there’s nothing high functioning about it. Just because he can talk, just because he can eat food, just because he can walk, he was considered more functioning.
Labels and Autism
Nicholas is considered more severe since he’s non-verbal and isn’t quite as independent. During that time, anytime I read something about severe autism, I would instantly think of Daniel and his behaviors, even though he wasn’t even diagnosed yet. The image just fit him better than Nicholas. I would immediately force myself to stop thinking that way, ‘No that can’t be right, Nicholas is the severe one.’ I didn’t allow myself to even entertain the idea. It was wrong to me. Even though, now, I realize there’s nothing bad about that.
That’s the thing with labels and Autism. It’s a spectrum for a reason. ‘Severe,’ ‘More,’ ‘Functioning,’ can mean many different things for different people.
We ended up doing some further genetics testing and found that Nicholas and Grace both have a rare genetic mutation called Weiss-Kruszka Syndrome. It comes from me, I just have a different variant. I was born with a heart condition called Pulmonary Stenosis, which is not as medically complex as Nicholas and Grace. The mutation is where both of their autism comes from. I have since been evaluated twice, and do not have autism. Daniel does not have the gene.
This was hard for me to accept at first. I felt like everything was my fault and I made them the way they are. I was warned by a few of Nicholas’s doctors that his condition was probably from me and my heart. I couldn’t process that. I didn’t understand how that was even possible, especially since we have different symptoms.
Having three children with Autism and other disabilities is hard. My husband and I have been married for 7 years. It’s been stressful, especially in the beginning when we had three babies in three consecutive years. Our finances took a hit. Our mental health declined. Our marriage was crumbling. I had to quit my job because our days were filled with therapies and doctor appointments. I couldn’t keep up at work.
Faith, Love, and Support
We rely on our faith to help us through the hard days. God didn’t give us these children because we’re special. He gave them to us because He knew they would need love. They would need extra help to get through this life. And we give them just that. Love and support to give them the best quality of life.
Our support system is strong as well. We wouldn’t be here today without the help from our parents, siblings, caregivers, teachers, doctors, and therapists. We are so fortunate to have people on our side who truly care about our family. Our kids work so hard, sometimes for months and years to accomplish things that take other children no time at all to understand. Nicholas, Daniel, and Grace are going to do great things.
Our kids are now 7, 5, and 4 years old, and all three are thriving. Nicholas started walking on his own when he was 5 years old. He’s in special education at school and loves it. He’s learning things his neurotypical peers are doing; he loves learning and figuring things out. Daniel is a fighter and the strongest kid I know. He has so much energy and talks up a storm. He loves Batman and is also enjoying school. Grace is coming out of her shell and starting to open up a lot more. School has also really helped her; she’s doing things that have taken us years to teach her.
For a long time, I blamed myself for how they were born. But then I realized this is who they are supposed to be. They are no less human because of their disabilities. The important thing is that our kids are happy. Genuinely happy. They have value and are worthy. They are here on purpose. They are going to change the world.”
This story was submitted to Love What Matters by Kate Anderson of Colorado. You can follow her journey on Facebook and Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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