an autism journey

Archive for June, 2013

Mom to Mom: What I Wish You Would Tell Your Child About My Child With Autism

I hear it all the time… young children asking their moms a question about my son. Why does he talk like a baby? Why he is in a stroller? Why does he have a service dog? Most of the time, the moms quickly hush their child in an attempt to end the questioning, hoping I didn’t hear, quickly moving out of ear shot before their child asks anything more.

I am going to let you in on what may be a revelation to you. I don’t mind your child asking questions about my child. My son doesn’t mind your child asking questions. Not only do we not mind the questions, but we wish you would answer the questions…. Honestly and openly, and with compassion.

Children ask questions because they want to understand. They cannot accept what they do not understand. When you hush their questions, or give them inaccurate answers, you are not sparing me or my son some type of embarrassment, you are however, making it seem like there is something wrong with my son, something so terrible that it should not be discussed in front of him.

I recently had a child ask me if my son was still sick. I was a bit baffled since my son had not recently had any illness. “Mommy said he is sick and might never get better. That is why he acts the way he does.” My heart sank. It was not the first time I had a child say something like this to me and it probably won’t be the last. I am quite certain the mom probably had good intentions when she tried to explain why my son was different, but I wish she would have told him something more accurate. What she had really taught her child was that my son should be pitied and feared. That autism is more than a different way of viewing the world, it is instead a disease that needs to be erradicated.

So let me tell you what I wish you would say…. Mom to Mom.

1) My son has autism. He is different. We know it and so does he. That is ok. He is just as special, just as loved, and just as important as your child is to you. Let your child know that.

2) Please teach your child the word autism. It is not a dirty word. If your child is not exposed the word now in its proper context…. he or she will be taught that word later, by someone else. Someone who might not treat that word with the dignity it deserves. It will not offend me or my son to hear you tell your child that he has autism.

3) Answer whatever question they ask as honestly as you can. My son is different. He doesn’t do things the same way most other children do. He learns differently and he sees the world differently. Sounds come out louder to him. Sometimes what he hears gets mixed up in the processing as it goes to his brain. He might not be able to respond in the way a typical child can.

He can’t talk because his brain processes information differently and sometimes the messages from his brain to his mouth get confused and the message doesn’t go to where it should. He wants to talk. He just can’t. That doesn’t make him any less than your child. It just makes him different.

4) Let your child know that although my son maybe different in some ways, there are a lot of ways he is like your child. He loves his dog. He loves to swing and play in the sandbox. He is reading and learning to write. He hates math, but he loves to learn about snakes and bugs. He really likes to play games on his Ipad, and he never wants to clean up his toys. He gets scared. He gets sad. He gets lonely….. but he loves to laugh. He wants to be accepted. He wants to have friends…. Just like your child does.

5) Tell your child that it is ok to ask him to play. It is ok to talk to him, even if he isn’t able to talk back, he still knows what your child is saying to him. Let them know that they can be friends with him.

6) Tell your child that it is never ok to make fun of anyone for any reason. Tell them their words have the power to change a person’s life… for better or worse. My son was made fun of at church recently. I intervened and stopped the child, but the damage was already done. My son was silent when it happened, but as soon as he walked in the door at home, he started crying and didn’t stop for an hour. He may not have the language to verbally communicate things, but he understood that child’s words perfectly. The old saying of sticks and stones…. It means nothing. Words hurt more.

7) Let your child know that it is ok for someone to be different. The world would be rather boring if we were all the same. Teach them by example to accept those who are different, whether it is from autism or something else in their lives. If you ignore my son, so will they. If you treat him as though he is less than, so will they. If however, you respect my son (and others with differences), if you treat him kindly, so will they.

8) Finally, if you don’t know the answer to your child’s question, I wish you would just tell them you don’t know, take the time to find out the answer, or ask. Making up an answer doesn’t help anyone.

My son attends Sunday School with a group of kids ages 3-7. Almost every Sunday, there is one little boy in particular, who asks me a question about my son. Why does he jump up and down? Why does he cover his ears? Why don’t I understand what he says? They are genuine and sincere questions from a child who wants to understand why my son is different. His questions have never bothered me. I answer them honestly and as simply as I can each time he asks. He melts my heart as he sits and listens to every word I say. I know he is taking it all in. A few weeks ago, my son said something to this little boy. The little boy’s face lit up with excitement. “Did you hear him? He talked to me! He can talk and I can understand him!!!!!” Not only did he tell me this, but he had to go around and tell each of his classmates and the other teacher in the room. The little boy had wanted to understand, he questioned, he listened, he learned. He had learned to not only treat my son with compassion and respect, but he had learned to rejoice in my son’s progress. I wish each of you would teach your child the same.

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Helping Your Child With Autism Attend Church

It can be very difficult for a child with autism to attend church and if they don’t want to be there, it can be downright impossible. I know this all too well from personal experience. Sometimes all it takes is one bad experience (something as simple as the music being too loud) to set them up to refuse to go. There are however, some things you can do that can help them adjust, tolerate, and hopefully, eventually enjoy church.

If your child has been attending church well in the past, and suddenly is not, take a look at what could be happening to make them not want to go. If it is music, try noise reducing headphones. If the pew is uncomfortable or they have trouble sitting still, try bringing a cushion to sit on, or a special seat wedge or disc that allows a little movement (a beach ball only inflated a small amount can be a cheap alternative to those special disc type seats). If they are bored sitting in the sanctuary, bring items for them to do (a fidget toy, a puzzle, even an ipad with the sound turned off, or a portable dvd with headphones). The goal needs to be just getting them to realize church is a positive place for the time being.

Be honest and upfront with your church leadership. Many churches are more than willing to make accommodations but just don’t know where to begin. Let them know the situation and don’t be afraid to ask them for their help. I know it can be difficult to let people into our personal lives, but it is important for your family to be able to attend church together. The leadership in the church cannot be expected to help, if they don’t know what the needs are.

Ask if you could bring the child into the church building when there is not a service going on. If you want your child to be able to sit in the sanctuary during a service, take them in when it is quiet and reward them just for sitting in the pew. Set a timer (starting at only few minutes if need be) and give them a special reward when the timer goes off. Be sure the reward is something they only get during this time so that it is worth the effort.

 If you want your child to go into Sunday School or Children’s Church, allow them to go into that particular room. Reward  them for just  going into the room, sitting at the table, ect.  Do this a few times before moving on. When your child becomes comfortable with this, ask if a children’s church worker can come in during a “practice” session and interact with the child (read a book, play a game, etc). Be patient, it maytake many times of doing this before they are ready to head back into service.

Once you feel your child is ready for the real thing, ease them in slowly. I find Sunday School to be the best place to start if your child is bothered by crowds. Usually Sunday School classes are smaller and a more relaxed setting then children’s church. Be willing to sit in the class with your child for a few times to help them adjust. You may need to start out again in small increments of time. Set a timer for 10 minutes, reward the child and then go home. Build your way up to a full service.

If there is a particular part of the service (or class) that the child does like, focus on that as a place to build.  If they like the music, try coming in just for the music portion for a few Sundays and then leaving. Try to leave BEFORE it becomes too much. Slowly work your way up, always rewarding your child for completing the task you have asked of them (sitting in the pew for 15 minutes, etc).

If need be, consider working a backward approach to church. Come in for the last 10 minutes of service, When that goes well, try going in for the last 20 minutes and so on.

 Whatever you do, just remember that keeping it positive is the key. It may happen in a week or two, or it may take much longer, weeks or even months, but remember that you and your child with autism are a vital part of the church family. The important thing is to find what works for your child and your family, and to allow each of you to find your vital roles in the church.

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