an autism journey

Ever since my first post about Autism in the Church, I have continued to get questions from leaders in churches as to how a church can minister to special needs families. I often hear things like, “our church just doesn’t have the volunteers for that. We don’t have the money. We don’t have the resources. We don’t know how.” I get it. I really do. I am not only a special needs mom. I am a pastor’s wife. I know how tight finances can be. I know how limited volunteers are. I know not every church is equipped to develop and implement a grand special needs program. Here is the thing. That’s NOT an excuse for not MINISTERING TO special needs families.

Ministering to special needs families is something EVERY church can do. What I am about to tell you is important…. You don’t have to have a specific special needs ”ministry” to “minister to” special needs individuals and their families. Did you hear what I am saying? Let me say it again. YOU DO NOT NEED TO HAVE A SPECIFIC SPECIAL NEEDS MINISTRY TO MINISTER TO SPECIAL NEEDS INDIVIDUALS AND THEIR FAMILIES. Too many churches are confusing specific ministries with ministering to. When I think of a ministry, I think of programming. I think of a special needs ministry being a specific program that reaches out specifically to special needs. Perhaps there is a special class during worship. Maybe a church implements a buddy system where a trained adult is paired with a special needs individual to allow them to participate in children’s church. Perhaps a church has once a month caregivers night out where they plan activities for special needs individuals and provide caregiving services. These are all great things. I wish each and every church could do that, but, the reality is, not all churches can.

That is still not an excuse to not minister to special needs families, and here’s why. The things mentioned above are specific “ministries.” They are not essential to “ministering to” special needs families. When I think of “ministering to,” I think of attracting, inviting, welcoming, encouraging, loving, supporting, sharing God’s Love, praying for, offering friendship, compassion, and understanding. That is ministering to. That is something every church can and should be doing.

There is no reason why any church cannot do that. If your church isn’t, then its time to ask why? A special needs family should feel comfortable and accepted in your church. They should feel like they matter. They should feel loved.

The Bible tells us that each and every one of us are a part of the body of Christ and if we exclude any one person or group of people from that, especially for something like special needs, we are saying to God, that part of the body doesn’t matter. That is a dangerous position for any church to take.

I encourage you if you are a special needs family, find a church that will minister to you. Make that a priority far higher than any special programs they may or may not have. If you are a church leader, I encourage you to take a look at your church. Are their special needs families in attendance? If so, great continue to include, love, and support them. If there are not special needs families in church, you better stop and ask why. It might be you need to take a hard look at who is welcome in your church.

Advertisements

A Not So Typical Halloween

Holidays can be wonderful and amazing, but they can also be a tough reminder that our lives are not typical. Halloween is no exception. I have always allowed my son to dress up for Halloween. We picked something that was sensory friendly and prepared him ahead of time by talking about what we were going to do. Our church had a special trunk or treat event so we took him to that and only that. He knew the people passing out candy, and they knew his situation. Everyone was right there together, so he didn’t have to walk far or knock on doors. Perfect. Well, not exactly. It still caused him stress. He was nervous about walking up to the cars. He didn’t quite understand that you get one piece, not a handful. He was frightened by some of the costumes, and the groups of kids in close proximity was a bit much for him to handle. For us, Halloween lasted about 10 minutes and then we were back home. Each year I wondered why I bothered putting him through the stress of it all. Was I trying to force him to what I thought was a childhood rite of passage? Was I pushing a typical activity on a nontypical kid? Every year I ended up thinking maybe I should just have let him stay home. But somehow the next year we were right back at it with the same results.

So, this year, I didn’t think it would bother him to just skip the trick or treating. We just moved a couple months ago to a brand new town. We don’t know very many neighbors, and our new church doesn’t do a trunk or treat event, so our only option was old fashioned door to door. On top of all that, the forecast was calling for low temps and heavy rain. He doesn’t like to wear a rain jacket, a hood, or use an umbrella. The whole thing just didn’t seem worth it. It made me a little sad, but I just didn’t think he would be able to handle going door to door of strangers in the mass sea of costumed kids. I didn’t know that we could safely manage it. I opted to keep him home. I bought a huge bag of candy with his favorites (so he could enjoy as well) and prepared to simply pass out treats. He wasn’t going to care, or so I thought. I was wrong.

As kids started coming to the door, he insisted “shoes and socks.” When I asked where he wanted to go… “get candy.”

Ugh. I tried to explain, but he just didn’t understand. I clearly made the wrong choice. Chalk another one up to a special needs parenting failure. I thought it would be too much for him to handle and I made a choice I thought was best and safest, but he didn’t know that. He just knew what the others kids were doing and that he wasn’t. Parenting is tough enough, parenting a special needs child is even harder. And yet again another event to remind us how different our lives are for him and us.

Thankfully, Reese’s cups and KitKats cure a world of hurt fairly quickly. For him and me.

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.

 

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.

Tag Cloud