Last night my husband and I were watching Parenthood. We are several weeks behind. We really like this show. One reason is we think they do a fairly good job of portraying Max and the challenges of Asperger’s and managing the school system. Before you jump on me, I didn’t say great. However, I do think they make you stop and think and allow people to see a glimpse of what this side of the aisle is like. Last night Max was the photographer for the yearbook. Because his emotional radar doesn’t really pick up on people’s feelings, he was taking some pictures that were deemed inappropriate. The were beautiful photos and that is what he was focused on. One was a young lady crying because her dog had died. Max didn’t know this. She was being comforted by friends, and he thought it would be a good shot.  Next thing you know mom is with the yearbook sponsor who says we are moving him to layout. The girl’s parents are very upset. Mom objects and points out how far Max has progressed. The sponsor agrees and mentions another issue they had earlier that mom clearly knew nothing about. She said, “Why didn’t I know about this? Why didn’t someone tell me?”  Jonathan and I looked at each other and said, “So realistic.”  After conferring with Max, Mom decides he should get to continue in his role. Yet another meeting at the school. This time the administrator is there. Everyone agrees that Max has come a long way.  However, the administrator points out the issues the other students had with Max in the previous year on student council. Mom is surprised.  “Why didn’t I know about this? Why didn’t someone tell me?” Again, Jonathan and I look at each other and laugh. Very realistic. Hence today’s blog.

Easily the number one thing I hear from parents is they do not get communication about what is going on.  “What to do?”  This is across all age levels. From preschool to graduation. While I have a few tips, I don’t have total solutions. I would say that overall I would give our communication across these 11 years a B. We’ve had a lot of A teachers and therapists, some B’s and C’s, a few D’s and one or two that I would give F’s.  The first tip I have is to write it in the IEP. Communication is written in Rachel’s IEP every year. However, the big complaint from families is that they aren’t following the IEP so if this is the case it can be very frustrating. When they try to find out why the IEP is not being implemented, what they are working on in math, when said child is being pulled for extra reading and so on, they get no response or incomplete responses. In the beginning, parents aren’t upset. They just want to know what is going on and guess what?  If someone from school doesn’t tell us, we won’t find out from our kids or what we find out won’t make sense. So this lack of communication escalates until parents are angry and sure that the teachers/paras are monsters or that they are trying to hide something. I might be a little dramatic but not too much!  My suggestion when you can’t get emails and/or phone calls returned is to loop in the administrator and then go on up the chain of command if you need to. You can always be polite, direct and mention that my child’s IEP says fill in the blank and we have not been getting fill in the blank.

It is interesting to me that we all deal with educators who have been teaching awhile. Some more than others. Some have worked with kids with Down syndrome or other intellectual disabilities. Many if not most of our kids get speech language therapy, and it is usually evident that there is some kind of communication issue. Most kids I know with Down syndrome are able communicate verbally to some degree. Since it is evident that they have communication challenges, one would think that an educator, a para and most especially a trained special education teacher would know that they need to let us know what is going on or we won’t know. Rachel is a fairly effective communicator, but this might be a conversation I would have, and she is in 8th grade.  “Rachel it says on your iPad you need to do the worksheet for reading.” “I already did the worksheet.”  “Well, it says it big read letters on the worksheet you need to do it and it isn’t completed.”  “That’s for extra credit. I did my homework.”  “It doesn’t say extra credit. It says it is homework. Do you think we should do it?” The iPad notes and the homework folder instructions don’t match and aren’t dated.”  She shrugs and says, “Baby Sally has a lot of homework tonight. Marisol has to get ready to go to New York City. She is going to see her step mother. Her step mom is mean to her.”  So do you think you might need to send me a note letting me know when something is going on I need to know? At one annual IEP meeting in May of the school year, the speech therapist (the same one who inappropriately restrained my daughter the following year) brought up an issue that had happened in August. I said, “Excuse me. Why are you bringing that up now?”  She started explaining about something that had just happened and I said, “If it wasn’t important enough to tell me in August, I don’t want to hear it now.  The story about the iPad assignment and homework matching didn’t happen with reading but it has happened multiple times. When instructions aren’t clear, no mater how hard Rachel tries it can be difficult for me to put the puzzle together. This is very true when our kids are younger. Frustration mounts and Mommy Mast’s cross-examination mode is on!

I have had to loop in an administrator from time to time.  I’ve had to go to school and meet with the teacher. I am thankful for most of the teachers and related services professionals who have been good at communicating with us.  I am very thankful for the paraprofessionals throughout the years who have loved Rachel and have been our eyes and ears. I am thankful for the parents who will call me and say, “I didn’t know if you knew..”  Thank you for calling because if you don’t tell me, Rachel probably won’t and when she does, it is often hard to piece it together.  For you teachers, educators, therapists who are reading this, please keep us in the loop. I know it is a balancing act of telling us everything and letting us know what’s going on so we can help. If it is in the IEP do it and then you won’t have parents asking certain questions.  We recently had a resource teacher who I thought had a great balance of all of this. She didn’t call about every little thing, but if she needed to call me about something she would say “Since I have you on the phone I want to give you heads up.” Her philosophy was that often things happening with Rachel were typical adolescent girl issues.  She knew how we liked to deal with certain things and tried to employ those strategies. She also knew that we would want to be able to reinforce certain things. I like that fact that she didn’t want to overreact to something just because Rachel had Down syndrome.

Like I said, I only have  few tips and ideas.  I do think overall our communication has worked fairly well but it has been a work in progress.I can’t speak for other parents, but I will say if in doubt more communication is better, sooner is better than later and assume that if you don’t tell us, we won’t know.

Special thanks to Parenthood for another excellent glimpse into the world of “Receives Special Education Services.”