My Story by Quinta Mike
She is enrolled in an inclusion preschool classroom and receives speech therapy and occupational therapy.
This is her mother’s story of how they got where they are today.
When were you first concerned about your daughter’s development?
When Maddie was 18 months old my sister watched her for the weekend. When my sister returned her to me, she mentioned that Maddie hadn’t said anything all weekend. My sister made a big deal about it, and it kind of confirmed my concerns, because I had been thinking the same thing for about a month. Even though I knew not talking at her age probably wasn’t good, it wasn’t until someone else brought it up that I realized it really was an issue.
I felt horrible. I felt guilty for having suspected something for a while but not acting on it, but I didn’t know where to start or what to do.
How did your journey begin with early intervention services for Maddie?
Well, it was a long road. The first difficulty was getting everyone in the family on board. When I discussed it with my husband, he wanted to give her a little more time. But as a mother, I couldn’t let it go. I was with her everyday and I knew she wasn’t really saying anything. She was also acting different than the other kids. She was always off to herself. She wanted to suck on a sippy cup even if it was empty, almost like a pacifier, and she only wanted to watch TV. She had no interest in interacting with us. If we didn’t let her have her sippy cup and watch TV, she would cry, holler, and have extreme tantrums. She was also having a lot of ear infections, so I knew we had to get help.
After going through different agencies we ended up with our state’s Birth to Three Early Intervention Program, but even that was difficult. Once we got Maddie started with someone, at first, she didn’t want to participate. She would cry. She would run. She would tantrum so hard the entire time that the therapist couldn’t work with her. She didn’t want anything to do with it at all. I got stressed out about it and started realizing something was really going on. Her attention span was so short, she would get irritated real easily. The first therapist was getting frustrated, I was getting frustrated, and we weren’t getting anywhere.
Was there a turning point in services or Maddie’s development?
There were probably two turning points, one with me as her mother and one with her therapist.
First, I had to have some hope that she could get better. Once her older sister started school, I had time just with her. I started working with her. We turned the TV off and I’d make her come to me. Even though she was comfortable being on her own, with her cup, I got her spending more time with me. I would stack blocks, take her hand, knock them over, and make such a big deal about it that I finally got her to smile. I knew we were getting somewhere because she actually touched something and paid attention to me! It was huge. Even though it didn’t seem like much, I felt like she was slowly coming back into our world and connecting with me.
But at the same time her intervention services weren’t going well. We had gone through three therapists and we weren’t getting anywhere. They were all frustrated with Maddie and I wanted to give up on therapy altogether. I didn’t feel much like the professionals had a way to help me, but the service coordinator convinced me to try one more therapist.
So, when the fourth therapist started she promised me that if we, meaning me and my husband, worked together with her to treat my daughter, we would see a difference in a year. She told me that we could change Maddie’s development, but that it was going to take work. We knew this was our last chance and committed to do it.
The therapist started slowly with Maddie. She worked with Maddie’s older sister at first, so Maddie could just watch and see that it was fun. She slowly had Maddie do more and more. Even though it was slow, Maddie still cried sometimes, but it was less, and the therapist explained everything she was going to do ahead of time and why, so I could trust her more. I was seeing progress and it was so good to see.
Then the therapist started bringing up the word autism, and the possibility of getting a diagnosis. I was overwhelmed because I didn’t know much about it. When I thought back, the first therapist would throw out little words to try to hint at autism but never really said it. But the new therapist explained to me that there were different levels and she gave me more information, and I felt like I was comfortable enough to ask questions and get even more information. I started to do my own research and I started to feel like, “Ok if this is true, what can I do to help?” So anything she told me to do, I took it as my homework to help my child get better. That just made me want to work even harder.
What advice would you give to other parents?
I hold on to a piece of advice our pediatrician told us. The pediatrician said,
“It doesn’t matter what she’s diagnosed with. The only thing that matters is the treatment and the therapists you have to work with.”
That really hit home with me, so I would tell parents to look for someone who they can trust and connect with, someone they feel comfortable with. The therapist that worked for us was willing to tell us what she was going to do, why it may be difficult, and why it would help Maddie. The way she presented the information made sense to me and made me feel comfortable. She let me know that she was going to support me and build that connection. I finally understood what we were trying to do. I understood the goals.
What is your daughter currently up to?
She’s talking in sentences and answering questions. It’s amazing. To go from really having no words, to her telling me today that she has to go potty. The other day she said, “I gotta go potty. Potty. Pee. Pee.” It’s amazing. And in school there is a strong possibility that she will be in a regular education classroom when she starts kindergarten next year.