Those Who Mourn

by Michelle Nott

A little over a year ago, my daughter was diagnosed with autism. Receiving a diagnosis was actually a big relief for me, because it validated all the challenges I had been experiencing with her, but it has also been very difficult.

She is our fourth child, and as a baby, she was very calm and easy going. But things changed when she became a toddler. She wasn’t talking much, which didn’t concern me because two of my other children were delayed in speech until they turned two. But when this daughter turned two, the words still didn’t come. Instead, lots of intense tantrums came, and she stopped responding to her name. She would run away when I was at my church group, the library, or another outing, which made it very difficult to interact with others because I was always needing to keep an eye on her or chase after her.

Thankfully, our state offers an early access program, and my daughter qualified for speech services, receptive language, and behavior services. The first thing that the specialists recommended was to get her hearing checked. We found out that she had a lot of trouble hearing and needed ear tubes. I was so relieved and tried to convince myself that she had a speech delay because she couldn’t hear and that the other behaviors we were seeing were a result of not being able to communicate. Looking back now, I think I was probably in a little bit of a denial, and also just refusing to see what was in front of me.

First Stage of Grief: Denial

I never considered autism as a possibility before until I was visiting my family for the summer. My daughter was having some difficult behaviors at my parents’ house one day, so I took her downstairs to play with some toys to keep her calm. At that point I felt defeated and was in tears. My sister came down to check on us and noticed her stacking blocks. Then she asked me, “Do you think it could be autism?” “No, it’s just a speech delay because she couldn’t hear.” But deep down, I knew the possibility was valid. Over the next few weeks, I really began considering my sister’s observation. After talking with my husband, we decided to take the next step and have her evaluated.

Second Stage of Grief: Anger

Unfortunately, having her evaluated was not as easy as I had thought it would be. First, we had to get a referral from her pediatrician. He was a little surprised to hear that we wanted to test her for autism at first, but did go ahead and send the referral. The referral was the easiest part because the waitlists for an autism evaluation in this area are anywhere from 18 months long to 2.5 years long. I called so many different places and even had to beg one of them to put her on the waitlist! It was so long that they were trying to refuse her. At this point in the journey, I was so angry and sad that no one would help her and felt like I was failing her because there was nothing I could do.

Finally, my therapist told me that there was a new child psychologist in her building that barely had a waitlist (it was about 6 months compared to 18). I called and got her on the list, and then eventually scheduled her appointment. Finally, her initial meeting with the psychologist came up and we were told what to expect for the evaluation and given a lot of forms to fill out. The day of her evaluation came and afterwards we were told the confirming diagnosis: Autism, level 2. And while it was a relief, it also was a little bit shocking. I was expecting a 1.

Third Stage of Grief (for me): Mixed Emotions and staying distracted from them

I know the next stage of grief would be bargaining, and in a way, I guess I was kind of praying for her quick acceptance into a therapy program, but I also stayed so busy that I kind of buried everything under the tasks that needed to get done. Once we got the diagnosis, the real work began: filling out forms for insurance and getting her on a waitlist to start therapy (which could be anywhere from 6-8 months long). Another list. More paperwork. Lots of mixed emotions. Guilt. Defeat. Relief. Anger. And, of course, grief. The time spent making calls and getting papers filled out, getting another evaluation done at the therapy center, etc. kept me busy. I realize now that the grief was there, but it was buried under the busyness of life. My life suddenly switched from having time for myself to becoming the chauffeur to appointments and school pick up and drop off.

Fourth Stage of Grief: Depression

This past year I feel as though I’ve lost myself in the anxiety and chaos of life. And I’ve grieved for the loss of self-identity. I’ve also grieved for the loss of my vision of what motherhood would look like. I’ve been realizing that my family might not always be able to do fun activities like other families do. Last year we went to the farmers market downtown and took a family picture only to realize that my daughter wasn’t in it. She had run away. Thankfully, she didn’t get far and we got her back right away, but it was scary. And that was a reality check: we have to pay extra attention to her. We have to make sure to give extra warnings if things in the schedule change and give extra time to prepare her for the changes. I’m grieving the loss of having all my kids going to school together. I’m grieving the possibility of challenges she might face in her future. I’m grieving that she’s gone a lot of the time and has to work so hard for a little girl her age.

Fifth Stage of Grief: (Working on) Acceptance

Having a child with autism is challenging, but it is a part of who she is. I love the way that she can light up a room with her smile. She is very smart and loves to observe others around her and take everything in. It’s so fun to see what piques her interest each day. She is one of the hardest working kids I know and has made so much progress this past year. She graduated from speech services at her therapy center and is almost done with OT services too (still working on the behavior, but she’ll get there).

I’m going to be honest and say I’m still in the depression stage, though I am hoping as time moves on, I can get to the acceptance stage. And honestly, all these stages go back and forth depending on the day.

Mother and Child, Helene Schjerfbeck, 1886

Things That Have Helped Me

Some of the things that helped me get through all the uncertainty, waiting, and paperwork was support from my family, and meeting other parents who have a child or children with autism. I can see how God was with me through it by who He placed in my life at the right time. During all of this, I met three other women with children on the spectrum who have become good friends. They have given me advice, listened when I needed someone to talk to, and even helped take my daughter to therapy a few mornings when another child had somewhere else to be.

I got connected to a Catholic mom and dad who wrote several books about praying for our special needs children and giving advice on faith formation for them.* This was a huge blessing, because one of my biggest concerns for my daughter was how I was going to teach her about our faith in a way that she will understand. We are blessed to have Catechesis of the Good Shepherd Level 1 offered at our parish, and the instructor let my daughter join the class this past year. It has become the highlight of her Sunday!

I also got connected with our diocese’s “Person with Disability Ministry Coordinator” this past year and was able to talk with her on the phone for a little bit and meet her in person at an event last fall. She sends emails with resources and information about upcoming events that we can attend. There is still more that can be done to make our community more inclusive for those with disabilities, and sometimes I grieve for that too, but for now, I try to remain hopeful that things will keep getting better.

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* Michelle is referring to David and Mercedes Rizzo, who have written several books for parents of children with special needs, including Praying for Your Special Needs Child, and Spiritually Able: A Parent’s Guide to Teaching the Faith to Children with Special Needs. (Both of these are Amazon affiliate links.)