30 feet in 8 years-A Journey to Inclusion

Over the past eight years I have written many times about my daughter and our experience trying to find a place for her in the church.  Sometimes encouraging, other times, difficult to read, but all stories relevant to the bigger issue of inclusion of persons with special needs into faith communities.

This particular story, a summary of the first eight years of our journey, will hopefully serve as an encouragement to those just beginning their journey as special needs parents looking to include their children, those wonderful, special children, into their own faith community. I dedicate it to all those parents out there struggling to figure out how to make worship work for their child.   I am also hopeful, as our country embraces a wave of efforts for inclusion through a strong faith and disabilities movement, that their journey will be less lengthy but just as meaningful.

30 feet in 8 years- A Journey to Inclusion

In 2006, when my daughter Samantha was nine years old, she could not attend Mass at our new church due to the behaviors associated with her autism.  She ran, she jumped, and she vocalized loudly and randomly.  There was no way we were going to sit in that quiet, reverent sanctuary.  Not to mention that she had quite an aversion to being around large crowds, so sitting shoulder to shoulder in the pews was not going to work for her.

Before joining this new church, Blessed Sacrament, my husband and I took turns sporadically attending Mass.  I was determined that we would attend as a family together at Blessed Sacrament and went about trying to make this work.  We chose the 5 o’clock Saturday Mass as it was generally not as crowded.  I set Samantha up in a little classroom, used as a nursery, which is located in the front of the sanctuary with the “Great Hall” dividing the small classroom and the glassed in sanctuary area.  I could sit just outside the nursery with the door open and simultaneously see through the glass to the sanctuary and hear through speakers, as the Great Hall is often the place where parents bring their restless babies and toddlers during Mass.

The important thing, I remember thinking, is that we are actually here.  My husband was in the sanctuary with our oldest son, I often had Samantha and our youngest with me.  But we needed to get Samantha ready for the Sacrament of Holy Communion.  How was she going to do this without being a part of the Mass?

After about a year or so, I put another chair next to mine outside the nursery and invited Samantha to sit with me.  At first she would stay just long enough to hear the opening hymn and maybe get as far as the first reading, until she was back in the nursery, ready to watch a Veggie Tales movie.  I eventually gained the courage to walk her in with me so I could take communion.  This was her first opportunity to be in the sanctuary with the whole congregation.  As she got comfortable with this, we proceeded to prepare her for her first Holy Communion.

And as we moved through the years, we inched closer and closer to the sanctuary, eventually making it out of the nursery all together and sitting in chairs close to the glass partition, near the doors of the sanctuary.  I was thrilled when she could sit comfortably through the entire Mass, although she was still quite vocal and even prone to the occasional tantrums.  She was 14 years old when we were ready to try to attend Mass in the sanctuary with the rest of the congregation.

Our experiences inside the sanctuary were mixed however. At first, we tried just sitting in the back of the church for the last 10 minutes or so, getting used to the louder sounds and all the people.  We also tried different locations, starting at the beginning, not the end and so forth.  Things would go well one week and then be a disaster the following Sunday and I would get incredibly discouraged. After one particularly difficult experience when Samantha had a huge meltdown in the middle of Mass, we didn’t go back into the sanctuary for months.

A turning point came the weeks leading up to Samantha’s Confirmation.  Not only did we need to be able to make it through an extra-long Mass, but we were not even going holding Confirmation at our home church.  Yikes!

To prepare for the Confirmation Mass, I took Samantha and her brother to the different church one Sunday, the memories and anxiety of past experiences flooding back as if it were yesterday.  How would people respond to her is she had an outburst?  Would we be asked to leave?  Was this just a crazy idea?

As it turned out, I needn’t have worried at all.  Unless you knew her, you couldn’t have picked Samantha out of the congregation as a person who has a disability of any kind.  She smiled, she stood and sat when appropriate and listened to the music and the pastor’s words intently. I am sure that this was not just the work of many years of preparation, but the work of the Holy Spirit, encouraging us as we prepared for Confirmation.

Back at our home church, I began to routinely give Samantha the opportunity to sit in the sanctuary, usually giving her the choice to go in or stay in the Great Hall.  Although she still sometimes chooses to sit outside the sanctuary, she more than not decides to join the congregation, our congregation, our church family.

As I look back over the last eight years, it is truly a blessing to have parented Samantha through this journey.  We started 30 feet away in a closed-off classroom.  We fought through the barriers of autism and sometimes, the barriers of attitude of an unaware congregation.  We developed strategies to cope with Samantha’s challenges and I spoke out as an advocate to help my fellow church members understand my daughter.

Today, we walk confidently through he doors of our church sanctuary and take a place in a pew, filling a good portion of it when all five of our family members attend together.  Samantha likes to sit on the end, to have her space.  She will occasionally cut the communion line to receive the Holy Eucharist from our Pastor and does not like to kneel, using the kneeler to put her feet up instead.  And even though she does not speak or sing with the congregation, it is clear to all that she enjoys being in their presence, a part of our church family, fully included.

I marvel at how far we have come; from the nursery at the back of the church, through the Great Hall and into the sanctuary.  It only took us eight years to make it 30 feet, but the journey was well worth it.  Praise be to God.

I Corinthians 12:12-13, 22

“The body is a unit, though it is made up of many parts and though all its parts are many, they form one body.  So it is with Christ, For we were all baptized by one Spirit into one body…On the contrary, those parts of the body that seem to be weaker are indispensable, and the parts that we think are less honorable we treat with special honor.”