Today’s guest post is from Kari Wolfe, whose blog Imperfect Clarity passes on everything she’s learning as she works toward building a writing career, interviews fascinating people, parents her daughter in ways she never expected, and forges her own habits of success.
When you’re pregnant (or your significant other is), you spend a lot of your time thinking about the baby. You think about what he/she is going to look like. Will he/she look more like her father or her mother?
You think about what he/she will be like as a baby, how you will treat him/her. Are you going to co-sleep or have a bassinet and/or a crib? Are you going to nurse or use formula? What kind of diapers are you going to use?
I dreamt of giving my baby the type of education I wished I had. The best day cares, the best schools, the best teachers. The best programs. I wanted to give my daughter every opportunity in the world.
When you’re a mother, you can’t help but have these dreams and aspirations for your child. It’s part of your nature.
When Natasha was 18 months old, her father, Tom, and I started to worry. She hadn’t said her first word. When she played, she played in “her own little world,” paying no attention to the kids or adults around her. She batted and flapped her hands at toys she liked. She didn’t pay any attention to us–we could call her name, but she wouldn’t usually react.
Her doctor said for us to sit back, not to worry–this could be just a normal delay in her development. Not a big deal at this age.
He had her tested for autism at 2. We patiently waited a year, going to every therapy we could think of, hoping and praying maybe she was simply developmentally delayed.
She was diagnosed as having autism at 3.
In Dr. Elisabeth Kubler-Ross’s stages of grief, the original first stage is denial. In the expanded stages, the first effect is shock.
In my case, my husband and I suspected there was something different about Natasha. We had seen it when we went to the playground or visited neighbors–there was a difference in the children.
I was at Starbucks, having a cup of coffee with a behavioral therapist, when she told me that Natasha might be autistic. Here was someone else, outside of the family, who noticed something wasn’t quite right. She didn’t have the education to diagnose; what we wanted was an educated opinion.
I was calm; after all, I knew what she was going to say. Mentally, I had prepared myself; however, my heart broke into pieces.
Watching as she went over the therapies Natasha should receive to help her with her social and communication skills, I froze, a black pit in my stomach growing with every thought and every dollar amount she mentioned.
I saw my dreams for my daughter, my hopes and wishes and desires, vanish into thin air.
When Natasha was evaluated at two-years old, the behavioral pediatrician spoke candidly about the likelihood of Natasha being autistic and the possibility of her symptoms being only a developmental delay. She gave us the option to have Natasha diagnosed as having a global developmental delay rather than autism then having her evaluated again in a year, and we took it.
I made appointments for Natasha’s occupational therapy and arranged evaluations for her to be seen by the early intervention people to be evaluated for state and federal programs for developmentally delayed and autistic children from birth to three-years of age.
She stopped going to day care because I realized the teacher-student ratio may have been great for typically developing children, but Natasha needed someone to guide her activities rather than to let her wander for herself. Not long afterward, I left school so I could focus on her.
The second stage of Dr. Kubler-Ross’s stages of grief is anger.
It’s not fair. Why did this happen to us? Why did God allow this to happen?
I was angry at life. When I was alone, I screamed my anger out in the car with extremely loud guitars and a fast beat coming out of the speakers. Sometimes I would rant and rave in the shower.
I was angry at myself because it was always possible that I could have done something wrong. Babies don’t come with instruction manuals–what if this was all my fault for not doing something I should have done? What if I didn’t spend enough time with her?
Bargaining is the third stage.
While Dr. Kubler-Ross lists anger and bargaining (“I’ll do anything if ___ wasn’t so.”) as different sections, it’s very difficult in my mind to separate the two. Mentally, I bargained with everyone. I would have made a deal with the devil, had I thought it might have worked.
The fourth stage is depression.
After I gave birth to Natasha, I suffered from post-partum depression. My OB/GYN prescribed an anti-depressant and told me to consult with my family doctor.
Due to Natasha’s developmental delay and subsequent diagnosis, my family doctor would increase that dosage twice in three years.
For me, this was a much-needed part of the solution.
Throughout my entire life, I have had problems with depression. The anti-depressant helped me have the willpower to overcome the despair and the apathy I felt when in a stage of deep depression. Six months ago, my doctor lowered the dose after I felt that I didn’t need quite as much anymore.
Of the stages of grief, I believe this is the one that can be the most harmful. You can stagnate. Depression can lead to inaction–in my case, that was the last thing I could do.
** NOTE: Please don’t think I’m advocating a particular method of dealing with or working through depression. This is what worked for me. The best way to determine what is right for you is to discuss your options with a therapist or your doctor.
The first year of Natasha’s occupational therapy was my redemption.
Weekly, Natasha and I would go to the clinic where our therapist, L., would take us to the sensory gym. She would show Natasha how to take her shoes and socks off and we would go play on the trampoline, in the ball pit, or on the swings.
My mother tells me that teachers would talk to her during parent-teacher meetings and tell her she needed to get me to play. I didn’t play–from the time I could read, I’ve had my nose in a book.
L. taught me to play while teaching me how to help Natasha get the sensory information she craves. Not only was L. Natasha’s therapist, but she counseled me when I came to the appointments heart-broken and lost.
During this time, we saw all sorts of kids, some with autism, some with other problems, of varying ages and abilities. I watched the kids as they played and the therapists as they interacted with the kids and the other therapists. Some of the kids had problems that seemed to me much worse than Natasha’s–kids with feeding issues, sensory avoidance, physical disabilities. Watching them gave me hope.
Sometimes I talked with the parents of these kids. We would share stories and progress reports. It was nice to know I wasn’t alone.
Through this year, we played games, bounced on the trampoline, jumped or swung into the foam pit, and surfed in the ball pit. Slowly but surely, Natasha began to progress. She started to sign “more,” “open” and “all done.” After a year of what felt like no progress whatsoever, she started to communicate with us.
My heart began to mend.
The final stage of grief is acceptance.
It’s been a very long, rough road, but I’m mostly there. Sure, I have my moments of sadness that Natasha is autistic–but I’m realizing more and more that being autistic isn’t the end of the world. It felt like it in the beginning but, through listening to Natasha’s therapists and seeing Natasha making progress in things Tom and I questioned whether she would ever do, I’m learning that it’s not.
It’s still hard. I still have problems when I talk to mothers of children who are around the same age and they tell me their child never stops talking. They inevitably always ask if Natasha does the same thing. Part of me knows it’s just making conversation, small talk–but it doesn’t stop a little pain going through my heart.
Natasha is in hippotherapy (therapy performed while on horseback) for occupational therapy, soon to be for speech therapy, and the stimulation she receives from riding a horse has been extremely beneficial to her. In the past few months, we have seen her go from not really wanting to pay attention to saying her alphabet and drawing smiley faces to actually beginning to mimic the words her father and I are saying. She’s beginning to understand we want to communicate with her and she’s beginning to want to communicate with us as well.
And acceptance seems a perfectly natural thing after all. This is who Natasha is and neither her father nor I want her to change into something she’s not.
Kari Wolfe is a stay-at-home mother of a very curious three-year-old daughter who happens to be autistic. She is a writer and maintains her own blog, Imperfect Clarity where her focus is becoming the best writer (and person) she can be by living her life to the fullest 🙂