Updated: Nov 17, 2020
Finding time to sit down and blog is harder than coming up with an idea.
I have had plenty of people ask me how I manage and I say something along the lines of what else would I do. God gave me Cara and expects me to take care of her, with His help. I love Cara unconditionally. I am her mother. How could I do anything other than what is best for her?
For today, I want to focus on the time around Cara's diagnosis. We were actually very blessed when it came to Cara's diagnosis.
How can you be blessed by a diagnosis of autism?
I am referring to the people involved and actions taken. Autism as a blessing is several blog posts long.
Cara was a typical baby, meeting all of her milestones on time or early. She was cuddly, smiling, loved to giggle, and generally, a child you never would have guessed would wind up diagnosed as autistic. She even started to develop a few words on time. And then, things began to change. Around 18 months, Cara seemed to go backwards on her speech development. She lost all of her words and any forward progress in communication stopped.
By the time Cara was 2 years old, there was no doubt that something was wrong. We brought up our concerns with our pediatrician. This was when the blessings began to show. Our pediatrician listened to our concerns and examined Cara closely, paying attention to her behavior throughout the appointment. She narrowed it down to two possibilities - a hearing loss or autism. She didn't hold back and said she thought it was autism and pointed out that Cara had not been making eye contact with her consistently and she was not responding to loud claps. Since she had started to develop language and lost it, well, autism had to be on the table. Our pediatrician gave us a referral for a hearing test, speech evaluation, and for an evaluation for autism.
Our pediatrician could have sent us down a much different road. She could have said, "Let's wait and see how she develops. She might be a late talker." She might have completely ignored our concerns. I have heard the horror stories of the pediatricians who didn't listen and the ramifications for the child and family. One of the most important things that can be done for a child with autism is early intervention. Waiting to see if a child is a "late talker" robs the child of years of incredibly valuable treatment. Cara's early diagnosis opened up so many opportunities for us.
Cara's hearing test was a month after her well-check. Her hearing was in the range necessary for normal development of speech. Cara refused part of the exam, but there was no hearing loss preventing speech development.
Cara was evaluated by speech two months after her well-check. She began speech therapy soon after. The path for evaluation for autism continued.
Cara was evaluated by a team six months after her well-check. By now, her behavior was showing clear signs of autism. By the end of the evaluation, it was confirmed that Cara had autism. And our world turned upside down.
Still, we were blessed. Cara's diagnosis was early - 2 12 months. That meant she qualified for early intervention until she was three. A month and a half after turning three, she started preschool at the public school. No hunting for preschools or worrying about the cost. Cara's diagnosis gave her access to school as well as therapy at school - speech, occupational and physical. By the time Cara started preschool her motor skills were delayed. She needed help to throw a ball, jump, go up and down stairs. However, I often wondered about the decision to teach her to jump. [Insert laughter here].
We were blessed, but we were also hurting. Even to this day, 14 1/2 years later, I still cry thinking back to those days. I have to be honest and say that the pain has never stopped. It ebbs and flows and changes with the years, but on some level I have always have been grieving and hurting. I have also continued to move forward, learning and adapting and, above all, loving Cara.
To the parents who think something might be wrong - trust your instincts. Parents know their children better than anyone. The pediatrician may seem to have extra knowledge as a doctor, but they haven't been with your child every day and seen the changes that have occurred. Push for additional evaluations and if one pediatrician won't, find another. There are far too many autistic children who are diagnosed late and miss out on the all-important early intervention.
Once you get the diagnosis, permit yourself some quiet time to grieve. There is plenty of work ahead and plenty of people and their various opinions (especially family). There will be plenty of information to absorb. But before you face the future, deal with today. Don't rush past your pain. You will be your child's advocate, among other roles, and you need to take care of yourself.
My biggest help has been my faith - even when I wasn't paying attention. God placed people and services in our path that we desperately needed. God has given me strength and has helped me to forgive myself when I mess up.
God gave me Cara and then said, lean on Me for help. I do much better when I remember this.