an autism journey

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.

 

I truly believe that autism is one of the most misunderstood and highly controversial conditions of our time. If you don’t believe me, ask the person beside you what they think of autism. I guarantee they will have an opinion. It probably won’t be the correct one, but they will have an opinion on the cause, the cure, and what parents should be doing about it.

Our children are being starred at, made fun of, and ignored. They are treated as anything but equal. As parents we have to fight for them daily. Even among other autism parents, we are not always understood. Autism is a wide spectrum. Some kids are high functioning and will go on to lead a fairly typical life. Others are severe and may never speak and many will need constant care.

I could spend the day trying to spread awareness…. I could explain for the millionth time what autism is and why the world should care, but the reality is, I am too tired and too busy LIVING autism. So, on this World Autism Awareness Day, instead of spreading awareness, I have a wish, a wish for every parent out there living autism.

I wish for just one day of peace. One day of knowing our children are safe and healthy and well. One day of our children not being bullied, teased, and made fun of. One day of our children being accepted by their peers. One day of our children being included. One day without stares. One day without judgement and criticism. One day without having to fight for what others take for granted. One day of not having to worry. One day of knowing our children will be ok. One day of a good night’s sleep. One day of help. One day of calm. One day of kindness. One day of love. Because, maybe just maybe, if we could have one day of our children being loved and appreciated for who they are…. One day of others seeing our children as we see them…. Then maybe one day can turn into two, and then a week, a month, a year….. and maybe eventually a lifetime of not just awareness but acceptance. That is my wish. Oh…. and I wish for a whole lot of chocolate in the meantime.

 

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.

As the mother of a child with autism, there is one question that I am asked more than any other…. Do you think vaccines cause autism? I have to say that I am sick and tired of hearing (and answering) that question. The reality is that most people don’t really want to hear my true opinion on that subject, what they really want is for me to agree with whatever side they are on. It is the one question that can instantly change the mood in the room and start a fiery debate, and I find it interesting that it is always those who DON’T have a child with autism that seem most inclined to argue about it. Here is the thing…. I just don’t care anymore to engage in that whole debate.

When my son was first diagnosed, I played that game. I researched and studied, I asked lots of questions and formed my own “educated opinion,” and yes, I have earned the right to call my opinion “educated” (I live it). I needed to know what happened to my son. I  needed something or someone to blame for this battle, but eventually I became so wrapped up in caring for my son and helping him through his daily struggles, that at some point, I lost the desire to focus on what was already done and couldn’t be changed. I no longer was researching, no longer asking the questions, no longer seeking the answers to the whys because I was focused on the what now and the what about the future?

I was caught up in raising a child with autism, as it should be. My time and attention was, and is, fully focused on how to help him. It takes a lot of time to raise a child with autism. There are doctor appointments, multiple therapy sessions every week, educational meetings. There just isn’t time to waste on anything that doesn’t make the lives of our children better. Maybe it was part of the healing process, I don’t know. What I do know is that if people put half as much emotion and passion that they put into the vaccine debate into raising autism awareness and acceptance, into teaching their children that kids with autism are more like them than they are different, if they reached out a helping hand rather than a judgmental word, the world could actually start a change for the better. If people stopped arguing over the whys, and started asking how can we help, families would be healed, children would be saved, and lives would be impacted in a way that would actually make a difference. My son and children just like him could live a life respected, and seen as equal rather than less, they could have a bright future.

So, if you are looking to learn more about my son or other individuals with autism, ask away, but if you are looking for an argument over the whys, ask someone else, because I am busy.

Living Life as a Superhero

Due to autism, my son’s speech is limited, mostly requesting things he wants or needs. However, as his language continues to progress, we hear the occasional comment. It usually comes out of nowhere and surprises us, amazes us, sometimes makes up stop and think, and always makes us sit up and listen.

Today as we were walking back from church, he matter of factly says to me, “I am a superhero!” That was it, no other words, no actions, no play involved, just the words, “I am a superhero!”

I am pretty sure he really is.

Imagine living life knowing what you want to say, but not being able to express it. Imagine if you are sick, but can’t tell anyone. Imagine having a fear you can’t talk about it. Imagine the questions you would want answered, but can’t ask. Imagine if your entire sensory processing system didn’t work properly, the world is always too loud, too bright, too stimulating, too confusing. Imagine not being able to zip your jacket, or button you shirt; not because you don’t know how, but because there is a disconnect between what you want to happen and what your body will allow. Imagine being made fun of for what you have no control over. Imagine people ignoring you, talking about you. Imagine being frightened, lonely, hurting, wanting to give up.

I am pretty sure that is how the world feels to my son: overwhelming, scary, too hard. The thing is, instead of giving up, instead of becoming angry, instead of listening to all the negative, he carries on. He presses forward, he learns, he adapts, he grows. He takes the impossible and makes it happen. Isn’t that what a superhero does? They have unimaginable problems in everyday life, they have people who don’t believe in them, the odds are stacked against them, but somehow they still manage to do something amazing, and in the process, change the world around them…. A little bit at a time.

That describes my son exactly. When the speech therapist said he would never speak in sentences, he did it anyway. When the so called experts said not to bother teaching him to read, he learned to read anyway. When the other kids said, “he can’t do that,” he showed them he could. He is accomplishing the impossible. He is doing something amazing. He is changing the world a little bit at a time.

Yes, my dear son, you are indeed a superhero.

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.

RESPECT

April is autism awareness month. You might wonder why we need an entire month dedicated to awareness of autism. It is because of comments like what my son had to hear today while playing games with a group of children, “Don’t pick him! He can’t play! He has autism!” It wasn’t whispered quietly in hushed tones, it was said out loud for all in the room to hear, including my son. I can’t help but wonder if those words are spoken so boldly for even his mother to hear, what kind of things are said when there is not someone around to stick up for him. It still stings just thinking about those words coming out of the mouth of another child towards my son.

We need so much more than a simple awareness of what autism is. We need  awareness that EVERYONE deserves to be respected and treated like a human being. It is often difficult for my son to understand the complex rules of social interaction. It is difficult for him to understand what is expected of him in group situations, and it is often hard for him physically to make his body work in the way he would like to be able to play group games such as kickball, baseball, or even tag. He does however desperately want to be included and given the chance to do the best he can. He wants to have friends, he wants to play, and learn, and be accepted like everyone else. NOBODY wants to be left out or treated as if they are less than others.

What do I want for autism awareness month? I want every parent to take just a couple of minutes of their time to teach their children exactly what I just said. That it is never ok to hurt someone’s feelings and that autism or not, every child should be treated with respect and dignity. That and only that is what will make a difference in how my son and countless others like him are treated.

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