Parent Essays

Ignoring God's children

An Essay by Clay Boatright, president of The Arc of Dallas, and serves on the board of directors for The Arc of Texas. Clay and his family live in Plano; his e-mail address is clay@jnine3.org. It is used with permission.

It is startling to see your life depicted on a television show, especially when that show is a top-rated crime drama. This week's episode of Law & Order, titled "Challenged," showcased the challenges facing millions of American families, including mine.

The plot revolved around Pete, a 47-year-old man with intellectual disabilities who had been sent to a state institution by his parents when he was only 3. Willowbrook, the real-life New York institution closed in 1987, was described as a "hell hole." Now living in a community home, Pete today enjoyed his unique group of friends, diverse caregivers and the respect of his employer.

This episode's moral dilemma questioned parents who willingly place a child with disabilities in a state institution. It bitterly, and quite accurately, described the immeasurable stress that disabilities bring to a family and the lack of support they receive.

The writers, however, made one mistake. Several times the dialogue referenced, "that's how things were done then," suggesting times have changed. For many families, things have hardly changed at all.

As the parents of 8-year-old identical twins with severe developmental disabilities, my wife and I have come face to face with this moral dilemma. Our pediatrician recently told us that we should "prepare to place them somewhere" in the next couple of years. In other words, he recommended we institutionalize our children.

This happened in 2008, not 1964. While many parents make this difficult decision, it does not come easy. As reported in The Dallas Morning News, all 11 Texas "state schools" for people with developmental disabilities are currently under investigation by the Department of Justice for alleged abuse.

Most families want to stay together. However, as shown on Law & Order, the physical, emotional and financial strain on a family without support can be insurmountable. Community-based services cost less than institutionalization, but Texas forces people with disabilities to endure waiting lists for nearly a decade before receiving help. Not surprisingly, for families who can no longer go it alone, there is no waiting required to place their child into our DOJ-investigated institutions.

With almost 100,000 people on waiting lists, and more citizens institutionalized than in any other state, Texas ranks among the worst five states in the nation for disability services. Collin County has the lowest per capita funding for people with developmental disabilities in Texas. In cruel irony, Plano was recently named the wealthiest city in the United States.

In other words, the most prosperous city in America is at the bottom of the bottom for helping God's children most in need.

The lack of adequate care for people with disabilities is pervasive. Earlier this week, local news aired video from a Dallas County school bus showing a driver choking a student with disabilities. While most professional caregivers are compassionate, abuse is not isolated to certain areas, just as it was not isolated to the 1960s.

Caring for people is a matter of choice. Our state lawmakers can choose to end the waiting lists, while the federal government can chose to provide funds to upgrade education, housing and employment options. Our schools can choose to improve staff training and provide quality programs and supports. Our churches can choose to respond to God's word and "treat with special honor" those he created differently.

While these choices are not cheap, the costs pale in comparison to the destruction of families who have no choice at all.

 

By Renee Bennett. Essay on her Son’s 16th birthday:

I would be shown numerous times throughout my life of little bits and pieces of God's plan for me to have this special child, But you don't see the whole plan until the picture is laid before you! Then you think, this is what you were trying to tell me God! Now I see! You don't truly recognize the hints from Him until you truly look back and reflect on your life. God Knows!

I knew I wanted another baby during my second marriage, a son I prayed for! God granted my wish. I had complications during my 20th week of pregnancy ..I started bleeding and was put on bed rest. I asked God then if he would let me keep my child I would do everything I could to teach my baby about Him!

I knew I would have a baby boy! I developed toxemia and high blood pressure. Because of my age, an AFP blood test was done and it came back negative for Down syndrome. I am really glad it did because if I would have known I would have worried the whole time over the things you read and are told. I would not have terminated the pregnancy because this child was very much wanted as were my daughters. God Hears!

During one of many ultrasounds, the doctor asked me "does your husband have short legs"? My husband is not a very tall man and I answered yes. He asked another question "Does your husband have short arms"? Yes I answered, he kind of does. Are these routine questions I thought? Was I going to have a midget or dwarf? Nothing else was ever said about those odd questions? A beautiful 4 lb. 6oz. baby boy was born on September 15, 1993 and we would call him Christian Jack-Douglas Bennett. Christian, because I knew he would grow up to be a Christian man. Jack because that was my wonderful daddy's name who I lost the year before. Douglas named after his father.

I would write this name over and over on paper not knowing the sex of my baby! Christian Jack-Douglas Bennett I would write. We were overjoyed. His dad & sisters Cressa, Mandy and Lyndsey were in the delivery room and Watched him take his first breath. He had his daddy's nose and ears, his sister's color hair, my color eyes, my black eyebrows. He was perfect! God Sees!

Things drastically changed at 4:00 a.m. a doctor comes in the darkness of the hospital room and says "Your baby has low set ears, (No! I thought to myself, those were his daddy's ears!) Slanted eyes, (No! I thought to myself, those were my eyes!) A protruding tongue (No, I thought to myself, that would be the tongue he would use for speech, licking ice cream cones, and singing about Jesus). One line on his hands. (No! I thought to myself those would be the hands he would give hugs and play the guitar). We hink he is a "Mongoloid'! What kind of name is that to call our beautiful baby boy? What kind of name? I did not even know what it meant. But the way is was told it could not have been a good thing. Or so I thought! Then the doctor left the room. I went to sleep not understanding the whole meaning of what she meant. Another doctor also told us just to love him. Why would that need to be told to parents? Of course we were going to love him. We saw no difference between the love we have for our son or for our other children. No difference at all. God Touches!

I used to work for a Gyn & Ob doctor in Clear Lake and my mother also was proud just as she is of her other grandchildren and she told her Gyn Ob, doctor about his birth and the Down Syndrome he told her don't have too much hope! Can you believe that! Don't have too much hope coming from a professional doctor. God Hopes!

The day we finally brought him home. I was told stimulate him, sign Him up for this, enroll him in that. How do I do all these things I thought!

So many things to do and think about. Until one day I put Christian in the hands of God and prayed. Only then did He answer and told me. Why are you afraid? I did not give you this child to fret over. This child is a gift from Me. I gave you this child to love him as you do your other children. To teach him as you did your other children. You are not the one who will have to overcome obstacles of this world. Christian will. Christian will love everyone with unconditional love that some people may not understand, Christian will not see his limitations, nor should you. Other people Will judge him, but you as his family must not! Help to teach others about His strengths and his abilities. Christian will celebrate his 16th birthday on September 15th and I can tell you to this day he has taught us so much and those very words I heard from Him some 16 years ago have rang so very true. God Speaks!

The 16 years have gone by fast and I treasure each and every day with my son. I am no longer afraid. I have done just what God has asked of me. Some people do not understand and have looked at Christian with pity and lack of understanding. To those I am sad, for they have not known the true gift of what God gave to our family 16 years ago. I know longer question why, I just say thank you every day for ALL my children. I was told by a school principal some many years ago. It must be hard! You have your children Cressa, Mandy, Lyndsey & Brandon and then you have Christian. I looked at her I told her without hesitation. No, I have all my children, no separation. Christian loves the weather, he loves to help others, loves Wheel of Fortune but most of all he loves Jesus and us! I have kept my promise to Him! God promises!

Christian does not know he has Down Syndrome. That is something that if he asks we will tell him. But I do not want the stigmas of this world to limit him as they will. We do tell him he can do things and he can have all the dreams he wants! If I would have been told some 16 years ago a little differently about Down syndrome I may have not been so afraid. So my advice to anyone who has a child with Down syndrome is do not be afraid. Raising your child will be a road worth walking down. Don't focus on the Down Syndrome or the disability because he is your child first and foremost. Yes, there will be bends in this road as there are with any child, but you will laugh along the way and cry.

But Christian sees things I could never see, he says things I would never think of, he accomplishes tasks that I never was told that he would be able to do, he has shown me things I would have missed. He looks at everyone and everything with a pure heart! God Sees!

If Christian does not understand something he will tell me it looks like cursive. I thought how fitting! So look at your child and just tell people that don't understand, that your child is cursive. Happy Birthday, my son Christian, and I am forever grateful that you are cursive! God knows no difference!