Wednesday, November 5, 2014

A Place for Moise

In late October Jim and I took Moise to visit the deaf/blind school near Chicago. The anticipation of this visit evoked myriad emotions in me.  I wanted to be objective, to see the school with my mind and not just with my mother heart.  My friend, Joyce, went with us as a special needs educator, as one who knows Moise very well, as one who knows my heart and knows well the struggles that we face on a daily basis, as one who could be more objective than I.

I've visited a lot of schools over the years and it's always been a source of great stress for us.   Moise's education needs are very simple and yet very complex. Together with our school district's special education coordinator, his teachers, and therapists, we have reevaluated his school placement each year to determine what is best for him.  It's a team effort in which everyone's voice is heard. We started, when he was three, with a school specifically for children with cognitive disablities.  The school was wonderful but they were ineffective in meeting his hearing impairment needs.  We then moved him to a school for the hearing impaired.  His first year there was amazing.  But then his two teachers, who had been deaf educators for many, many years retired and two new, fresh out of college teachers took their place. What once seemed like a dream, quickly became a nightmare. I am sure that these two young women were wonderful deaf educators but they had little tolerance for Moise's other disabilities. They were idealistic, wanting to teach deaf children who learned several new signs a week and would soon be fluent in sign language. That wasn't going to happen with Moise.  We had come to a place where it seemed there just wasn't an appropriate school out there that could meet all of Moise's educational needs.

Up until this point, it had never even occurred to me that Moise could go to school in our home district, where our other children attended.  But our sp.ed coordinator, fully aware of the situation we had faced, said "I don't see any reason we can't teach him here, at our school."  It was unprecedented. Our small community does not have large special needs population and no one as complex as Moise, and certainly not a deaf child, had ever been taught there.  But it was worth a shot. At the start of the new year, Moise was assigned a one on one aide and he started early childhood right down the hall from Brock.  It was fabulous.  Moise blossomed. Together, he and his aide, his beloved O'Keefe learned sign together, one word at a time. He learned his shapes and colors and eventually learned basic math and reading. Each year we would reevaluate and each year we came back to our school. As he got older a simple "life skills" program was developed and several other children benefitted along side of him.  O'keefe stayed with him until he transferred to the middle school and she stayed in elementary.

There have been a few, very few, over the years who have had a problem with Moise being mainstreamed into a typical school.  Those who think "he doesn't belong."  But, while that attitude causes the she bear in me to rise up, I remember that they don't know.  They are ignorant of the great deal of effort, the meetings, the discussion between our family and the school that goes into finding the best place for him.  They don't know that Moise is not just cut from a mold designated for children with challenges. They are oblivious to the fact that his being deaf and now blind make it almost impossible to find a perfect fit for him.  They are clueless to the fact that in developing "life skills" programs in our school, we pave the way for others who come after him and keeping children in our district is ultimately cost saving.

Last spring we contacted the deaf/blind school near Chicago, seeking guidance on how to teach him and give him back some of his independence without his vision.  The consultant from the school has visited us several times and has given Jim and I, as well as the professionals at the school, excellent recommendations which we are slowly implementing into his daily life.  She also shared with us that the school is residential.  Moise could live there if we chose that option. And she told us that we would be amazed at what he could learn to do in a deaf/blind environment.  From that point on, our hearts have been in turmoil.

From the day that we learned of Moise's disablities, we have had one help him reach his greatest potential. We've tried to never limit what he can do in spite of his challenges.  Learning comes slowly, sometimes painfully for him.  But like the rest of us, there is no end to what he can learn.  We have always, regardless of how difficult or inconvenient or painful it might be, tried to do what is best for him.  And in so doing we have been repeatedly amazed.  There are so many things that we never thought he would do but he did them anyway.

Suddenly with the knowledge that there is a deaf/blind school near Chicago, a school that reportedly could "do wonders" for him,  we struggled to know and understand what truly is best for him.  Could it really be that "doing what's best' meant sending him away to live?  We never doubted for a second that the school could do wonderful things for him.  They are professionals.  Teaching deaf/blind is what they do.  But this time helping him reach his greatest potential would come at a very great cost.  The love and nurturing of mother and father and family would be sacrificed in doing "what's best."

I would be a liar if I were to say that we never gave thought to how much a residential placement would simplify our lives.  We thought of it alot.  It would solve so many problems for us.  It would give some semblance of "normal" to our every day life.  The constant issue of "who's going to stay with Moise" would become obsolete.  The ever present physical strain on our bodies would end.  The endless appointments to doctors and therapists would no longer be our concern as they have doctors and therapists right there at the school.   Jim and I could actually go to church together.  We could go to dinner without worrying if Moise will grow weary of waiting and attempt to throw everything off the table.  Jim and I could enjoy time together without the astronomical cost of a specialized care giver.  We could not deny that the ways in which this school would make our lives much easier were endless.

In early September Jim and I had an experience that left us feeling broken and weary.  I came to a place of  "I this anymore."  The strain of 24 hour caregiving felt like it was sucking the life from me. The timing of this particular experience had me considering that maybe a residential placement would be best.

I lost countless nights of sleep agonizing over this. My heart writhed at the thought of taking him and leaving him somewhere, knowing we probably wouldn't see him more than once a month.  They would teach him well. But they probably wouldn't make sure his clothes match, his shoes are clean, his nails clipped. They wouldn't spray a little cologne on him before school each day or let him wear button shirts, even though they are a pain sometimes, because they make him feel proud.    They wouldn't massage his arms and legs with lotion after every shower.  They wouldn't lie next to him at night and watch the moon light on the wall or sing the Bumble Bee song just because it makes him smile. They wouldn't tuck him in and tell him they love him every night or kiss his cheeks and forehead, chin and nose.  They wouldn't pray with him every single morning.  The school would be great.  I know that. But they wouldn't be his parents.  They could never love him like we do. They could give him a lot but not the things that matter most.

On that beautiful October morning we drove to Chicago, not entirely sure of what we expected to find.  We met with the director. He was wonderful.  We toured the residential facility which was old but clean and wonderfully geared toward deaf/blind individuals.  We saw the school. Met the teachers, the professionals and para professionals, the students. My mind nearly exploded with thoughts and ideas of how to teach Moise.  The grounds were beautiful with a park clearly set up for disablities.  There really was not a single negative thing that we could say about the school.

 Towards the end of the day, in spite of all the good things that we saw, I knew with every fiber of my being, that this was not the place for Moise, at least not yet.  I feared that Jim would not feel the same, that this would become a huge source of contention between us. We really didn't dscuss it much on the drive home, each of us processing it all in our own minds.  But when we got home, Jim came in from outside, rubbed Moise's head and said "That school's not right for him.  He is our little boy. He belongs here at home with us."

Relief flowed through me.  Jim and I were exactly on the same page.  The agony of this decision was over.  Moise will not be going to the wonderful deaf/blind school.  He will stay right here with us, where he belongs.  We will continue to seek guidance from the professionals at the school and we will find a way to teach him and help him become all that he can become.  It won't be easy.  It never has been easy.  But God is faithful.  He has always met our needs.  And Jim and I and Moise...........we'll do this thing together, right here, one moment at a time.

God is good, all the time.


  1. I'm in tears after reading this! I can't imagine the struggles that you deal with each and every day and I will keep you and your family in prayer. On the other hand I think you need Moise as much as he needs you! God has truly gifted you with the strength & patience to put love in action. May God bless you and lead you and guide you through all your decisions. You bless me when you share your thoughts. It inspires me to be a better person. Love Diane

  2. Wow. Continuing to pray for you. All of you. Love to sweet Moise.

  3. I just kept looking at Moise in the swings and I thought how much I wished Zoey's school had one for her. I watch you, and the grace with which you journey and I wish I were half the woman you are. Your honesty and your unselfish sharing of your children with us, with me, is such a gift. Such a gift just when I need it the most.