Experience story

I was concerned about my twin boys’ development since they were born. My boys always seemed so serious. But there were times when I got them to laugh, so I decided not to worry too much about it. My contact with the babies was different but I contributed this to the fact they were twins. They focused a lot on each other and excluded the rest of the world. Sleeping at night and during the day was absolutely impossible since the boys cried all day and night. My boys suffered from a milk protein allergy and did not seem to respond well to gluten, so an adjusted diet was on the agenda. I had to keep to a tight schedule and stay home a lot. When I went somewhere like the supermarket it was a drama. Still, I enjoyed the baby time with my lovely boys very much and even went back to work as a pediatric nurse. I also started studying as a nurse practitioner.

Preschool started. The language development of my boys was different. Josh and Sam were already able to say the alphabet at two years of age and they could count to thirty too. We got a lot of attention with those two, singing in the buggy while counting! They also knew a number of words and even entire sentences, but did not always use these words in a functional manner. Newly acquired words quickly disappeared from their memory. A lot of echolalia occured (repeating words and whole sentences) but because this was acceptable at their age, the doctor at the clinic did not worry about it. When I asked for a referral to a speech therapist, he literally said, “The boys are getting enough stimulation at home.”

Only when I followed a course about Autism Spectrum Disorders did I understand what was going on with Josh and Sam. I went to the three-year consultation at the doctor’s office and I brought a list of what I was worried about. Meanwhile Josh and Sam were already in a playgroup and did not make contact with other children. Their use of language deteriorated sharply and they suffered from angry outbursts every day. Only when they were three years and three months old did Josh and Sam get a diagnosis. Severe Autism. According to the Autism Team in the Netherlands, there was little that could be done and the boys were referred to a medical daycare center (MKD).

I started to find out what kind of treatment was best for our boys. ABA, Applied Behavioral Analysis, was the only therapy that has been sufficiently scientifically researched and proven as the treatment method that really works. Because I had to deal with a long waiting list for the MKD, I took the reins into my own hands by traveling to America and followed a three-month ABA treatment in Phoenix Arizona at Southwest Autism Research and Resource Center. I hired an au pair with the help of my PGB money and also trained her and my other children in ABA.

Coming back from the USA, I hired Jolanda Scherpenzeel (remedial educationalist, educational and behavioral expert) for further guidance. After repeated research, it appeared that Josh and Sam had undergone an 18-month development in the social field, language level and intelligence measurement. This made their prognosis much better! After our trip to the USA, Josh and Sam became toilet-trained and went to the regular primary school at the age of four, under the supervision of Jolanda and a team of students that we hired and trained in ABA.

Josh and Sam are about to graduate from High school this year. They are looking forward to a college or university education. They have many friends, hobbies, and participate in sports . Just like other children who ever had a diagnosis and received intensive ABA counseling, Josh and Sam are able to lead a normal life thanks to ABA.

Sam & Josh
My dream is that all children with developmental delays and (at risk of developing) autism will have the opportunity to develop like our boys. That they regularly come into contact with children of their own age, who provide stimulation that they would otherwise not experience. Every child deserves this opportunity!

Jennifer Niemeijer, mother of Sam and Josh