Consuelo: We have three children: a set of twins—a boy and a girl—who are 10 years old and a 5-year-old boy. Nicholas, our older boy, has autism. When the twins were about 3 months old, I knew something was wrong with Nicholas, but the pediatrician just told me to relax. He thought I was just overreacting because I was a new parent. But when their father would come home from work, Nicholas didn’t react like Isabella did. I thought maybe he was blind or deaf because he didn’t make eye contact like his sister did.
Dave: When Nicholas was 18-months-old, we saw a child psychologist, who said there was a high probability that Nicholas had autism, but the psychologist didn’t say for sure. Nicholas received private speech therapy for 6 months before the diagnosis was confirmed. We had heard about early intervention (EI) services from our pediatrician, and he said we could have Nicholas evaluated through EI, even though he didn’t believe that Nicholas had a developmental delay. We contacted our EI provider when Nicholas turned 2. After a full team evaluated Nicholas, they confirmed that our son was eligible to receive EI services, which included occupational therapy, speech therapy, and play/developmental therapy. It was very convenient to have the play therapy at our home—it would have been nice if we could have had more of that.
Consuelo: The twins were our first kids, so it was hard emotionally to find out that something was wrong. We really navigated ourselves through the EI system. The parents have to be educated about how everything works: Which doors are open? How does it work? I wish we had known then what we know now.
Dave: After we became involved with EI, we heard about parent groups. Kids and parents would get together at the park to play. Occasionally, there would be a talk on some related topic. It was really helpful to go to these meetings and educate ourselves.
Consuelo: EI was a whole new experience—there were good things and bad things about it. There were not very many choices for us then—the occupational therapist was not the right fit, but we had to stay with her. Our coordinator recommended someone else, but that therapist was not available. It was difficult being on a waiting list.
Dave: There were not any EI therapists that were specifically trained for apraxia. Another speech therapist realized later that he has speech apraxia, which is a neurological issue; there are delays in controlling the tongue properly. The child has to think about articulation when it would normally come naturally. It makes speech much more time-consuming for our son.
Consuelo: Unfortunately, we didn’t really experience friendships with our therapists. They questioned why we wanted to try something else—there was one way, and that was it. “We are therapists, and you’re just the mom”—that’s what I thought they were saying to me.
Dave: I would recommend to other parents that they start as early as possible. Our pediatrician didn’t want to worry us, but we could have started much earlier if we had known. It is important to always be present at the therapy and really watch what the therapist does with your child. Parents should question if the therapist is using best practices and ask that the therapist target things that are most important.