Special Needs Awareness - Follow Up

A few weeks ago I posted an entry on special needs awareness.  My Parents of Special Needs Children support group at church had been asked to do a presentation at the PW (Presbyterian Women) Luncheon on children with special needs.  As we prepared for this presentation, we decided that each of us would give personal quotes that would be displayed on tent cards at the tables explaining our thoughts or a specific situation we have experienced raising our children.  As well as that, two of our members would speak.  The first is a retired special education teacher that gave a brief overview of the vast special needs and disabilities that exist.  She emphasized that only 20% of disabilities are visible.  The rest of these children look just like any other child.  The second member to speak, Eileen Koehler, is the mother of 3, her oldest having Asperger's Syndrome.  I was so touched by Eileen's speech, I asked her if I could share it on my blog.  She was kind enough to agree.

                                                                        Eileen's Speech

Hello, my name is Eileen Koehler. I have been a member of DCPC for a little over a year. I have three boys, Thomas 12, Henry 9 and Owen 7. I have heard many wonderful things about the staff of the DCPC preschool and have witnessed many acts of love and compassion that all the volunteers and so many members give to all the children. DCPC members give so much of their time and talent for our children and I am so very grateful.



I have been asked to speak a little about the special needs children here at DCPC. All the diagnoses that you see on the poster boards were given to children who are members of this church. The quotes are directly from members and express what they have experienced either within the church community or outside. I realize that these diagnoses might seem trendy or new fangled. But let me suggest that we consider all the scientific advancements made in medicine; and how we readily applaud the increased chances of survival for certain types of cancer or the improvements in the treatment of diabetes, and so on. So, logic dictates that we should also applaud the advancements made in neuroscience that can offer better explanations for many child behaviors that were not known before.


Since “special needs” represents many different challenges; from cognitive to medical difficulties, I asked a mother if there was one thought that I could convey to you that would encompass what our families wish and it is this…that because we are human sometimes it is easier to look approvingly at the well behaved, self possessed child and otherwise be judgmental of the child (or the parent for that matter) that is pulling away from their parents’ touch, not responding to their name or seemingly refusing to follow instructions, avoiding eye contact, unusually reserved bordering on rudeness, bumping up in line, or a little moody because they know they cannot fully enjoy a church event due to medical issues. Whether it is genetics or the circumstances surrounding their birth, it is at that very moment when we are challenged to remember they were created by God exactly as they are and they face adversities that, in many cases, are unseen to the naked eye. I don’t know if Jesus had special needs children in mind when he said in Matthew, Chapter 18-5, “If anyone takes in a child like this for my sake, he takes in me”. But, maybe they are God’s little messengers to remind us that when it is hardest to love, that is when love is needed the most. It could be God’s way of asking us to meet that challenge and so these children are a gift from Him to bring out the best in ourselves. I remember when a physician very bluntly said that more was going to be expected of us as parents. More patience, different parenting methods, better understanding of child development, more informed about alternative educational techniques. I felt so angry….I think of myself as average and I didn’t want the expectation of being some bottomless pit of patience and a possessor of tremendous insight into child behavior. I was prepared to be a slightly improved, lovingly well-intentioned, but flawed parent much like my own mother! Even siblings of special needs children sometimes have difficulties because so much attention is given to one member of the family. They cannot articulate what they feel so they may act out in public. There is a story for all this, we landed in Holland.


If you had the chance to read Emily Pearl Kingsley’s “Welcome to Holland”, it expresses very well what our lives feel like. When you realize your child is different or when you officially receive a diagnosis, Kingsley likens the experience to having your vacation plans drastically changed from a wonderful trip to Italy to unexpectedly landing in Holland…permanently, forever. The portion that resonates with me in relation to religious faith is “But everyone you know is busy coming and going from Italy and they’re bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That is what I had planned. The pain of that will never, ever, ever go away because the loss of that dream is a very significant loss.”


That is from the viewpoint of a parent; my feelings of loss…a bunch of teenage boys coming over to the house to hang out with Thomas. All the parents here of special needs children can tell you something about their lost dream. And make no mistake, as those quotes show; we have some painful stories to share. But we also are adults and have our faith and each other to help sustain us. We need and appreciate any support we receive from all of you. However, that passage also can represent the feelings of the child who is, or will someday be, cognizant of their separateness from their peers. What about their lost dreams of party invitations, play dates, having their name called in a friendly way to join a game, having a girlfriend or boyfriend, meeting up with a bunch of kids after a movie and eating in the mall food court…but can’t because they need a special diet. They spend a lot of time at doctor offices and therapy sessions. They too can see the disapproving looks when they “don’t fit your idea of normal”. For them, like landing in Holland “that pain will never, ever go away”.


So I think to myself, maybe it is not about what I need but what our children need from DCPC, they need you. As parents we can give them all the love we have but we won’t always be there during some of the most challenging moments of their lives whether in the classroom, on the school bus, on the playground and further on in their lives when they are in college and in the workplace. It is now, in their youth, their experiences here with you at DCPC that the development and growth of their faith in Jesus’ love, as His love is expressed through your kindness, that is going to be so very crucial for their future. Because it is this very faith they are going to need when they try to find their way in a society that can lack inclusivity and even be outright unkind. They are going to need strong religious faith to sustain them when they witness all the wonderful experiences other children continue to have in Italy; the times when they feel alone and rejected, when they are tired and faced with numerous medical procedures, when they feel set apart because they need special classes to help them keep up with their peers socially or academically. So besides their own families, where else will they experience the welcoming and unconditional love of Jesus, if not here at DCPC…from all of you? We know that they can find sanctuary here and can truly believe in the love of Jesus Christ through each of you and your family’s patience, your smile, and your kind words of encouragement.


I would like to conclude with something from Matthew, Chapter 18- 10, “Do not think badly of these little children. I tell you this. They have angels in heaven. And all the time their angels can see the face of my father who is in heaven.”

Thank you Eileen for sharing this with us.  It truly gives an insight into the feelings and thoughts of us as parents of children with special needs.