an autism journey

Archive for the ‘Autism and the Chruch’ Category

FAITH

I remember when my son was first diagnosed with autism. It was hard to hear the word autism. There were so many decisions to make. Choosing therapies, education options, considering diets, programs, devices…… But there was hope at that point. I truly believed that his diagnosis gave us the power we needed to now move on head first into helping my son. I believed if we just found the right “fit,” for him, figured out how he best learned, figured out what he needed, we could and we would indeed conquer this. I believed whole heartedly that with the right amount of faith, prayer, and good old fashioned love, my son would be just fine. He would talk. He would grow. He would learn. He would overcome, and one day we would look back and say, “wow! Look what God has done for him!” I was so not prepared for what lied ahead.

I have worn out my knees in prayer over the last several years, holding steady to my faith. I believed in the power of prayer, in the power of God, in the power of healing. My son was going to be fine, my marriage was going to be fine, my family would be fine. This was just a bump in the road for us. While my faith was indeed strong, I had a complete misunderstanding of what faith truly was about and that misunderstanding has led to additional unnecessary pain.

As Christians we learn early on about the importance of faith. After all, the Bible tells us the faith as tiny as a mustard seed can move mountains. We are taught that if we just have enough faith, God will answer our prayers. I truly believed that faith meant believing and expecting God to heal my son. The problem with that idea (although it is certainly true that God often does heal and answer many prayers) is that by that reasoning, an unanswered prayer, or at least not the answer we are looking for, leaves us wondering, “is my faith not strong enough or does God not care?” Not only do we then begin to doubt ourselves, we are far too often judged by other well intentioned, yet misguided Christians, who think it is their responsibility to let us know that we should just “pray harder.”

My son is now 11, and nothing has gotten any easier. He is still considered “low verbal.” He speech is mostly limited to 2-4 word requests. “I want juice, I need blanket.” Not only has my son not been healed, but his challenges have increased. We now have the addition of panic attacks and severe anxiety. It is difficult to go anywhere at this point. Even getting him into the car can be a challenge. He bolts, he wanders, he bangs his head. He is much bigger now, and stronger, and faster, and much harder to manage. We are at the most difficult place we have ever been in our autism journey.

Which has lead me to question my faith, question my beliefs, question why God is not doing something, ANYTHING, in all this. It has led me to a sometimes deep, dark, and lonely place that can be hard to get out of. It has however, led to me a new understanding of what faith is, of what it truly means to trust in God.

It is easy to trust and believe when you think things are going to get easier, better. When my daughter asks me for something (that is within my power to give), it doesn’t require faith. She has learned over the years that she asks, she gets. Period. It is something she has experienced over and over, and come to expect. We often go to God with that same expectation. I ask, He gives, and many times he does. But that is not really some great act of faith, it is just something we have learned through experience.

What I am coming to finally learn, is faith, real faith, goes far beyond expecting the answer to our prayers. Faith is believing God loves us. Believing He is always by our side, guiding us. Believing in his power and his strength to get through anything that comes our way. Faith is believing God has the power to answer our prayer, but trusting Him enough to know that if He doesn’t give us the answer we seek, He is still a good and merciful, loving God. That is faith.

I am learning it takes faith to believe God CAN heal my son, but it takes a greater, deeper faith, to accept if He doesn’t. That if we must walk through the fire, we will not be alone.

It has not been an easy lesson. It is one that I must adjust to daily, but it is making me stronger. God loves me. He loves my son. He loves my family. And if we hold onto that, we can not only withstand any storm, we can thrive in it.

For God so loved the WORLD

The other day in Sunday School, my son had a substitute teacher and he turned out to be the only kid in his class that day. The teacher was able to focus all of her attention on him. She taught the lesson using felt board figures and allowed him to place each one onto the board as she told the story of Moses and the Burning Bush. When she finished the story, she laid out all the felt pieces onto the table and asked him to show her the answer rather than expecting a verbal response. He answered almost every question correctly, and the ones he didn’t answer were simply reworded in a way that made more sense to him and then correctly answered. Without hesitation he even answered the question of “how did God speak to Moses?” by simply pointing to the burning bush. Despite the wiggling, the stimming, the random noises, the jumping up and down, despite the communication barriers, my son was listening, and more importantly, he was learning.

Why is this such a big deal? My son has been considered mostly non verbal for much of his life. His communication has been limited to mostly one word requests. Although his verbal skills are now developing, they are doing so slowly and intraverabal communication (speaking about things that are not in front of him visually) are particularly hard. I have argued for years that my son takes in far more information than what he is able to spit back out, but to be perfectly honest, most people (including teachers at church) do not believe me. They assume that if a child does not speak, he does not know. If he is not sitting still, he is not paying attention. If he is not showing that he is learning, it is not worth the effort. How wrong they all are!

Churches are making this mistake over and over again all across the world. Children like my son are simply babysat and kept out of everyone else’s hair, while they concentrate their teaching efforts on more “typical” children. The message they are unintentionally giving is that children like my son aren’t as important in the church or the kingdom of God. Oh how that hurts not only these children, it is hurting their parents, it is hurting their own churches, it is hurting the other children in their classes, and oh, how it must be hurting the very One who created them. Our children’s church workers, our Sunday School teachers, our pastors, our greeters, our church board members, and each and every one of our church leaders really need to learn that EVERYONE in the church matters to God! There is not one person that God doesn’t want there, not one person who isn’t capable of learning the Gospel (no matter how abled or disabled they might be), not one person EVER who is not important in the Church and in the Kingdom of God.

If there is only one autism message that I could share with the world…. That would be it! That EVERY person, including those with autism, are spiritual beings created by God, loved by God, desired by God, and sought after by God. They need to hear the Gospel message. They need to have someone show them God’s love firsthand. They are capable of learning and participating and growing spiritually. They are capable of being a part of the Body of Christ. We have got to stop treating them like second class citizens in the Church and make it our responsibility to give them the opportunity to be a vital part. Until each and every one of us in the Church embraces this, we aren’t truly the Church at all. John 3:16 tells us that “for God so loved the WORLD,” (notice that it say the WORLD, not just the pastors, not just those who are healthy, not just the well behaved, not just those with high IQ’s, not just those who are easy to love…. the WORLD…. I don’t see any stipulations of any kind in there), “that he gave his only Son, that whosoever” (there it is again…. WHOSOEVER!), “believes in him shall not perish but have eternal life.” If God was willing to give his one and only Son over to death to pay the price for EVERYONE, shouldn’t we as the Church, at least be willing to adapt our methods to teach them? May God have mercy on us if we choose otherwise.

Stop. Listen. Obey. Praying for a Special Needs Family

As a pastor’s wife and the mother of a child with autism, I often hear the words, I am praying for you. It seems to be everyone’s go to words when they don’t know what else to say.

Sick? …. I am praying for you.

Lost your job?… I am praying for you.

Hurting?… I am praying for you.

I can’t help but wonder how many people really mean it. Don’t get me wrong. I believe in the power of prayer. I truly appreciate all the individuals who are genuinely praying for my son and my family, but genuine, heartfelt prayer is more than a one sided conversation with God. It involves, listening, seeking, and obedience. Ahh…. There is the part that might trip people up. It is so easy to ask God to make a difference in the life of a special needs family (or anyone we are praying for), but what about asking God if there is a role for you to play in that difference?

Special needs families are struggling. They need for people to do more than just ask God to help, they need people who are willing to ask God “what can I do?”. Hmm… this is where everyone starts making excuses. I have my own family to care for, I am busy with work, I can’t. Stop. Listen. Obey.

Maybe God wants you to encourage. I recently received a note from someone telling me she thought I was a great mom. She didn’t pity me. She didn’t judge me. She respected me. I can’t tell you how much that meant. Stop. Listen. Obey.

Maybe God wants you to help with a financial need. It is expensive to raise a child with special needs. Therapies, special schools, doctor bills…. It adds up and many families of children with disabilities have to do it on one income. Stop. Listen. Obey.

Maybe God wants you to reach out to the siblings of the special needs child. They are often making due without a lot of extra attention.Take them out for pizza. Offer to take them to the park. Stop. Listen. Obey.

Maybe God wants you to help with everyday tasks that often are neglected because mom or dad is just too tired. Offer to help with household chores, cook a meal, shovel the sidewalks. Stop. Listen. Obey.

Maybe God wants you to simply offer your own time and friendship. Make a phone call to let the family know you are thinking about them or better yet, invite the family over for dinner. It has been at least two years since anyone other than immediate family has asked my family over. I can’t begin to tell you how lonely that becomes. Stop. Listen. Obey.

Maybe God wants you to help the family attend church. Offer to sit as a “buddy” with the special needs child in Sunday School. If you are a Children’s Church worker, ask what you can do to accommodate so the child can attend. Maybe God just simply wants you to let the individual and family know you are glad they are there. There is a lady in our church who stops my son every week to tell him she is glad he is there and gives him a dollar for being a good boy. I seriously doubt my son understands the value of money, but what he does understand is that someone cares about him and is glad he is at church. Stop. Listen. Obey.

Maybe God will ask you to do something big, or maybe it will be something small. Either way, you have an opportunity to make a difference. So, the next time you tell someone you will pray for them (whatever their need is), be sure you really mean it and then, take it one step further. Stop. Listen. Obey.

A Lesson on Worship

My son taught me a lesson on worship this morning. He has a very difficult time attending church, so we have been trying to just make it through Sunday School. “Just make it through” says it all. It is hard for him to sit still that long. It is hard to concentrate on a lesson that is geared for “typical” learners. It is hard to connect with children that don’t understand why you are different. It is hard to connect with adults who expect you to speak and make eye contact when in reality both are hard to come by.

So, usually at some point, it becomes too much and we leave for home. My son ends up unhappy, and I end up feeling defeated and wonder why I bothered to spend the time getting him up and dressed, pack a bag for every possible problem that might arise, gear up a service dog, and head over to church in the first place. Truly I spend more time preparing for church than being in church.

This morning was no different, we made it through 10 minutes of Sunday School when it became too much and the meltdown began. But this time as we were about to leave, he heard music coming from the sanctuary and wanted to go in and investigate. Too exhausted to fight it, I obliged.

When we entered the sanctuary, he took the first seat nearest the door and sat down. There was no one else in there except for a handful of people from the praise team practicing the songs they would be singing during morning service. I looked over at my son and realized he was calm, quiet, and content. We sat there for a good 30 minutes just listening to the music.

As I sat there amazed at the change in his behavior I realized something. My son was worshipping God in his own way at that very moment and so was I. I could feel God’s presence at church for the first time in a very long time. Not that God hadn’t been there all along, but somehow, I had got myself so caught up in wanting my son to participate in church in the way every other child was that we were missing out on something. And here sat my son as a testimony that there is no right or wrong way to worship in the presence of God. Really what is church supposed to be about any way? It doesn’t matter how long you are there, what room you are in, what type of music is played, or who else is there. It is about you and God.

When the praise team was finished practicing and people were beginning to come into the sanctuary for the start of the actual service, my son wanted to go home, and so we left before church service ever began, but that was ok, we had already been to church and worshipped God, and that was enough.

When an Individual with Autism Can’t Attend Church: How the Church Can Help

As the mother of a child with autism and a pastor’s wife, I have a passion for special needs ministries. I truly believe the church needs to be willing to adapt and accommodate these individuals. However, the reality is that not all churches have the man power nor the resources to adequately meet the needs of all individuals, and sometimes even with the best of efforts, there are individuals whose needs are just so great, that going to church becomes an impossibility for the individual and their family.

I speak from the heart on this subject, because it seems my own family is on the verge of such a dilemma. We are in a small church, struggling to come up with enough volunteers to serve in children’s ministry as it is, and although I know my son is loved and wanted at church, he is struggling to even be able to sit through church, let alone actually function and thrive in it at this point. By struggle, I mean he is miserably unhappy. He is overwhelmed and overly stimulated.  He cries, he asks to leave, and if all else fails, he bolts from the room. Me chasing him through the church has become an all too common of a site for our church family. We have tried everything we can think of to help him. We have sought the advice of his therapists and implemented many of the techniques they suggested. We have tried visual schedules and limiting transitions. He is accompanied by his faithful service dog, who eagerly helps and provides sensory support, but still, it is not working. At this point, he is sometimes able to sit through one hour of Sunday School (with me as his aide), but anything beyond that, he simply shuts down. He does not talk, he does not interact, he just wants to go home, to get away from the noise, the excitement, the people, the expectations. And so, we leave. It is not the way I want it, but it is, at least for the time being, our reality. I am not giving up, I am continuing to work with him and try new things. I am praying that in time, he will become more able to sit through a service and that one day we will again attend church as a whole family.

It has given me a whole new idea of what a shut in has become in today’s day and age. Most church ministries simply think of shut ins as the elderly and the very ill who cannot attend church. As the rate of autism increases, I think it may be time for churches to think in broader terms when they consider those who cannot attend church. There are more and more individuals and their families dealing with much more hidden reasons to not attend, and those families are being overlooked and underserved by the church as a whole.

So what can the church do? This is a new area for me. I certainly don’t have all the answers, but being in this position myself, as well as seeing it from the perspective of a pastor’s wife, here is my wish list, so to speak, for what churches can do to reach out to these families in need.

1) Discuss with the family what their needs are and be sure there isn’t something the church can do to help the individual with special needs (adult or child) to be able to attend church on a more regular basis. Make every effort to get the entire family incorporated into church, but understand that even with the best intentions, sometimes the needs of the individual might be too great to be served by the church at this time.

2) Accept the family’s decision. Maybe mom might need to come one Sunday and Dad another so they take turns caretaking. Maybe the entire family will need to miss church. Maybe it is a single parent home or one parent works on Sundays. Understand that sometimes difficult choices have to be made, and although the family may want desperately to attend church, it might not be in the best interest of the individual with autism, at least for the time being. Release the family from any guilt that might cause them.  Trust me, as a woman who spent her whole life in church, I can testify first hand that the guilt felt from not being able to attend is great, even if you are doing it in the best interest of your child. God however, knows the needs of these families (and mine). He knows the struggles. He knows their hearts, and it is God’s place to judge, NOT the pastor’s nor the church’s. Let the family know that you miss them, but that you understand why they are not there.

3) Continue to invite (but not pressure)  them to various church activities. Perhaps it is hard for the individual with autism to sit through a service in the sanctuary, but maybe a church picnic outside would be more comfortable way to be involved. Invite them to church egg hunts, Christmas parties, fellowship gatherings, Bible School, any events you might have. Even if they can’t come, knowing they are wanted goes a long way.

4) Visit them. A visit from the pastor or church staff is always appreciated, but sometimes a visit from a Sunday School teacher, a children’s church worker, or just a loving individual in the congregation means much more. Besides the opportunity to visit, it opens the door for the individual with autism to get to know the people in the church in their own safe, familiar environment, opening the door for them to possibly one day be able to return.

5) Send them cards, notes, make a phone call. If the individual with autism is a child, have the other kids in their Sunday School class make cards to send. Acknowledge birthdays and special occasions. Let the individual with autism (and their family) know they are still thought about and loved. Don’t forget to include them in things like a church directory, so that others can reach out to them as well.

6)Bring them recordings of the sermon, video tapes of the children’s church lessons, pictures of events to share with them.  Send them copies of bulletins, sermon notes, Sunday School lessons, Bible Studies, ect.

7)If possible, see if a Sunday School teacher (or other volunteer) would be willing to come out and share a short part of the lesson with the individual with autism. Individuals with autism need the gospel shared with them on a level they can understand and are comfortable with. Do not neglect the spiritual needs of these individuals. I can speak for my son personally. He may have trouble sitting through a lesson and trouble responding, but he takes in far more than he is given credit for. He is quite capable of learning Bible stories, praying, and memorizing verses. At the very least, take out materials from the lesson so that Mom or Dad can teach the child the week’s lesson.

8) Offer a ride to church for siblings of the individual with autism. Be sure to include the siblings in other church events as well. Have a volunteer willing to look after them so that they can participate, and mom and dad feel comfortable sending them.

9) Consider other ways you can help the family. Take out a meal occasionally, bake cookies for them, offer an afternoon of respite care (even if it is just to give mom a chance to catch up on some housework, while a responsible adult plays a game or reads a book to the individual with autism).

10) Last but certainly not least, pray for the family. Ask if there are specific needs you can pray for, and do so faithfully. Let them know that you are praying for them. It truly is a simple task everyone is capable of, but means so much.

Sometimes the time out of church might just need to be temporary while the family works through issues, but even if it is long term, these individuals and their families can still (and need to) play a vital role in the church family. Don’t leave them out, don’t forget about them, and don’t assume someone else will do it. Whether they are in church every Sunday, once a year, or not at all, they can and should still be a part of the church.

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.

Service Dogs at Church

Under The American’s with Disabilities Act, individuals with disabilities are legally allowed to be accompanied by their service dogs into almost any place that is open to the public. There are very few exceptions. Church, is one of them.

Just because a church is exempt from having to legally allow a service dog to enter their building, does not mean that they shouldn’t.  I have been surprised to hear from many families that there are indeed churches denying access for service dogs. I can only tell of my experiences with my son and his dog at church to emphasize how important it is for churches to think twice before turning individuals with their service dogs away.

Before my son received his service dog, we had just about reached the point of not being able to take my son to church (despite being a pastoral family). My son only attends Sunday School and Children’s Church. Sitting through an actual service in the sanctuary had to be given up a long while ago because it was just too hard for him. Even with being in his own class, it was highly stressful for him. My son is easily overwhelmed by crowds, loud noises, and changes in environment. It is hard for him to sit still and when stressed, he often times tries to run off or hide. All of those factors made it very hard to attend church.

Since receiving his service dog however, my son is able to withstand more. He still gets very anxious, but he knows that he can sit with his dog and his dog will lie over his lap (providing sensory input), while my son rubs his hands through his fur. I can’t explain why, but it is calming to my son.

He also walks into and out of church tethered to his dog. To my son, it is simply a leash attached to him so that he can keep his dog with him, but to us, it is a lifesaver that allows my son a little freedom to walk on his own without us worrying about him running off or getting hurt in the parking lot. It may seem so small to those who don’t have a child with autism, but even getting INTO the building can be stressful when you have a child who doesn’t understand dangers. Even once in class, leaving the room to go the bathroom can turn into opportunities to try to bolt. It is something that many people just do not understand. It is something that is made so much easier by having a service dog.

The biggest benefit of my son having a service dog is that children respond more to him now. Children are often attracted to dogs and seeing a child walk around church with one doesn’t go unnoticed. Prior to the service dog, my son was often noticed, but for the wrong reasons. Children would stare at him and back away as if they were afraid of him when he would stim and make noises. Having the service dog with him has acted as a social bridge, making an instant connection. Children go out of their way to speak to my son and ask to pet his dog. I cannot tell you what that means to him, or to me.

As for the dog himself, he blends right in. He has learned the spot he is expected to lay, and other than providing moments of comfort or accompanying his boy to the bathroom, he stays put. He has never once caused a problem. Other children do want to be with him, but they have learned the rules laid out and know there are times when they can and cannot pet him. I believe it has been beneficial to all.

I cannot emphasize enough the importance of allowing individuals with disabilities to be accompanied by their service dogs. I hope as time goes on, it will become something that ALL churches understand. To some it may seem a bit strange to think of a dog in church, but for families like mine, it has meant a way to attend church as a family that might not have otherwise been possible.

Tag Cloud