The “Big Meeting” CPSE

An icon illustrating a parent and child

Today I had the “big meeting” on deciding what, if any services my son would be able to receive through CPSE (Committee of Preschool Special Education).

I went in with a mindset that I would have to fight tooth and nail to make sure that he receives the proper services. I prepared myself to speak from a variety of roles; the parent, the advocate and the child life specialist. I was pleasantly surprised that it went incredibly smoothly and they determined that he would receive what was recommended.

The only thing that I had a difficult time with, was hearing the word, disability. The chairperson said a few times in an appropriate contexts but it rang in my head each time.  For a split second that is all I could focus on and then I would tell myself that it is just a word that they use to describe children who receive services from CPSE. That is all. I know my son is fine, I feel strongly that he will thrive in therapy and continue on with his happy life.  But I also felt what every other parent or caregiver felt when they heard that word or another label or diagnosis.

Being in the child life field, you are trained to help provide support to parents and caregivers in similar situations, but they are usually much more intense. You are empathetic, a good listener and resource to gather information and help translate it. I would never tell a parent, “I know how you feel”  because I didn’t. I would tell them “I can understand how you could have those feelings….”

Today, I can honestly say that I connected on a deeper level of understanding of what it feels like to hear that your child isn’t perfect. I mean in the sense that you never want to hear that there might be something wrong with your kid. Whether it is tiny or life changing, it is still difficult to hear.

I hope that fellow child life specialists, teachers and medical team members will continue to listen, provide support and be conscious of the way they talk about a child.

My Experience with CPSE

Working as a child life specialist at a pediatric inpatient rehabilitation hospital, I became familiar with the variety of therapies offered to our patients. Occupational, speech, psychology and physical therapists worked with the children on improving specific goals. The staff worked really well together and communicated to both the patients and their families. I understood the importance of therapy and the terminology used. I tried to always have a high level of empathy and sensitivity towards our patient’s and the challenges that they faced. I also supported the families who were coping with their child’s hospitalization and all the additional stresses that come along with it.

Fast forward four years and I have now found myself as a parent trying to navigate my son’s way through receiving services from the Committee of Preschool Special Education. When his teachers brought their concern to my attention, I felt a huge sense of guilt. How could I have missed this? With my professional background and experience working in a rehab setting, I should have been more on top of it. I think I was hoping he would “out grow” it by the age of four, but that obviously didn’t happen.

I’m still in the beginning stages of this whole process. I have contacted the school that he would be attending in kindergarten and was connected with their liaison for parents and CPSE. I met with a therapist at that school who also confirmed his preschool teacher’s suggestion on receiving services.

I have filled out a dozen forms, gathered additional paperwork from his pediatrician and teachers and I have chosen an agency to do a formal evaluation on him. Whew! The hardest part was just reading some of the questions about your child, their behavior, temperament, what they can and can’t do. The questions were intense and heavy at times. I was now in the footsteps that my former patient’s parents had gone through. I felt a larger connection with them thinking, “Oh, I really get it now.”

The agency has done their evaluations and we are now waiting for our formal meeting with a lot of important people; some one from CPSE, the agency, school district, parent advocate and my husband and I.

Through all of this, I have felt nothing but support and sensitivity from the professionals we have been in contact with. They have made this much easier and less overwhelming. My friends who are also going through similar situations have also been a great support system.

I know that there are still gaps in service. What are those and how can we adjust them? I am curious to hear other parent’s and professional’s experiences in this area.