That's my child - you are talking about!

Things we should not to say to parents with special needs.

I have heard people with good intentions say some unintentional cruel things to parents of children with special needs. For example: “He looks so normal”, “God only gives special kids to special parents”, “You're a saint, I could never do what you do”, “When is he going to start talking?”, “Will she ever walk”, “My child learned to read by age 1”, “Is he your only child - are you going to try again?”, “Oh poor thing”, “I’m so sorry”, “She is not that bad it could be a lot worse”, “Will he ever be normal” and “What exactly is wrong with him?”

One of these perceived unintentional cruel remarks was greeted with a very loud “I do not want you to feel sorry for me?” by a mother with a special needs child.  I am trying to smile and shake hands with people as they leave Mass and I have two well intention women standing in front of me about to start Wrestling Mania XXV.

The one with good intentions could not understand why the mother of the special needs child was insulted when she told her, “You know he really looks normal.” She began to try and defend her remarks by telling the mother of the special needs child, “Why don’t you tell me what I should say, since it appears you would be offended at any comment I made. I was trying to offer you sympathy. What wrong with offering sympathy for a child that will be at a disadvantage the rest of his life? If someone says they are sorry, why are you so angry? Don’t let your ignorance upset you - educate me as to what you want me to say!”

I am supposed to now step in and be the peace maker before they attack one another.

I took the well intentioned lady by the hand and led her back a few steps and suggested if she was ever in a similar situation she could say the same thing she would to a parent with a ‘normal’ child - “He has such a beautiful smile” or “he is growing so quickly.” Parents with special need children are not generally looking for sympathy or pity.

Parents of special needs children do not see their children as burdens. They have learned to appreciate the little things like smiles, hearing “mama”, touching/hugging their children and being touched and hugged by them. They feel tremendous joy over what other parents may take for granted.

Special needs children love to play have fun and do the same things that other children do, just maybe not in the same way. They have thoughts, feelings, opinions and desires, even though they may not be able to express them, much less speak them, in a way that the whole world can understand. Special needs children want to be loved and understood for who they are. I once saw a special needs child on television say, “I do not want you to fix me. I want you to love me just as I am.”

Parents of special need children tend to see the things their children have in common with ‘normal’ children rather than the differences. I have had many parents of special needs children tell me every child is a blessing and every child is a gift from God.

There are over 20 million families in the United States raising children with special needs. It’s a fact raising a child with disabilities can be difficult, but that does not mean their parents love them any less or enjoy them any less. There are health issues that generally bring on financial difficulties. There are mobility issues that must be dealt with. Education often becomes a major issue. If there are other children in the family finding enough time so no one feels neglected can become a problem. Planning for the child’s future in the event the parent’s become ill or dies before the child weighs heavily on the parent’s minds.

The real choice in accepting or rejecting a child with special needs is never between some imaginary perfection and imperfection. None of us is perfect. No child is perfect. The real choices in accepting or rejecting a child with special needs come down to the parent’s ability to love and nurture, having courage or being a coward and between trust and fear. But, are not those the same choices all parents must face.

A baby with Down syndrome birthed in 1942, the year when I was born, could expect to live about 25 years. Many spent their entire lives shut up in public institutions. Today, people with Down syndrome often survive into their 50s and 60s. Most can enjoy happy, productive lives. Most live with their families or share group homes with modified supervision and some measure of personal autonomy. Many hold steady jobs in the workplace. Some marry. A few have even attended college.

In John 9, we read that Jesus’s disciples met a blind man, and asked Jesus, “Rabbi, who sinned, this man or his parents, that he would be born blind?” Jesus made it clear it is not a question of sin or punishment when a special needs baby is born. “Jesus answered, ‘It was neither that this man sinned, nor his parents; but it was so that the works of God might be displayed in him’” (John 9:2–3). Parents of special needs children should not feel guilt and no one has the right to try and assign guilt to them. God did not look away when special needs babies are born. He did not make a mistake, nor was He punishing anyone.

Parents of special needs children by faith believe their child is not a burden, but a special gift from God. God is always in control and has their best interests at heart. God did not give them this special child to ruin their lives, for God promises to work all things for good. It is not always easy and we cannot always see the good, but by faith we must trust that God is working all things for good.

The church should not be a burden for Special Needs Parents. The church needs to offer programs that give the parents of special needs children a much NEEDED break. Church on Sunday morning needs to be, if nothing else, a respite. A time when these parents can have an hour — just one hour! — To fellowship with other adults; to relax and drink a cup of coffee; to focus on their own spiritual walk; to get away from the constant state of alertness that accompanies raising a special needs child.

You are NOT overstepping your boundaries by expecting your special needs child to be loved and accepted in church. It is NOT too much to ask. If others in your church are heaping more burdens on you than you can bear, it might be time to look for a different fellowship.

Ninety percent of special needs families do not attend church because most churches do not have mission programs for their special needs child.  The church needs to realize special needs children are a legitimate mission field. Church leaders should not predetermine who can and cannot be help by the Holy Spirit.

Jesus said, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me.’” –Matthew 25:40

One Catholic Church in the U.S.A. is taking seriously what Christ said and they are doing their part for the ‘least of Christ brothers and sisters’:

Handicapped Entrance & Parking: The handicapped entrances to the church are on the left and right hand side. They are accessible via the alley that runs behind 2nd Street and Glen Avenue. Side handicapped parking is available along Glen Avenue where the curb is painted blue, behind the St. Lucy house or in the lot directly across from the church.

Handicapped Bathroom: Located on the first floor in the front of the Church to the left of the altar. The main bathrooms are located in the lower level of the church by the lending library.

Handicapped Confessional: Located in the front of the Church to the left of the altar.

Handicapped Seating: Is located on either side in the front of the Church, right & left sides of the altar and the first three pews on each side of the main aisle.

Communion: Please sit in the first row of the Handicapped Seating area and a Eucharistic Minister will bring Communion to you. At St. Joan of Arc it is very important to us that every person who wishes to attend Mass and receive the sacraments can do so regardless of their limitations.

Assisted Listening Devices: They are located in the Narthex in the book cabinet.  Please see an usher.

Large Print Missals: Please see an usher.

REP for Children with Special Needs: SJA’s Religious Education Program supports all students, including those with special needs. Our program includes a special needs class held on Sunday mornings, helpers to provide one on one assistance in regular education REP classes, and in-home instruction for children who cannot attend classes. 

We will continue to partner with the Ministry for Persons with Disabilities to identify areas of improvement.

St. Joan of Arc Catholic Church
359 West Areba Ave.
Hershey, PA 17033