5 Things You Should Know About Autism Parents

Every parent of a child with autism is different, but there is some common ground I have found with many parents. If you wish to care for and minister to families with autism, there are five things you should know.

1. Autism parents are exhausted physically. Many children with autism have sleep disturbances that affect the entire family. I went an entire year getting only three hours of sleep per night.
2. Autism parents are exhausted emotionally. You can never let your guard down when it comes to autism. There is a need to be hyper-vigilant. Long-term hyper-vigilance can lead to PTSD.
3. Autism parents have extra pressure on their marriage. The divorce rate is already too high in society, autism can make this worse. Even if the parents do not separate, it is easy for the marriage to just slip into co-caregivers.
4. Autism parents are extremely protective. Nothing comes easy when it comes to autism. This includes getting services and treatments. Autism parents have to fight every step of the way. Don't mess with an autism parent.
5. Autism parents love their children fiercely. Of course all parents should love their children, but something really special happens with autism. Love is not based on what the child can do or what the parent can do. It is a deeper love that is soul to soul. It may or may not be expressed with words but it is a strong and deep love.

Parents, Children and Group Homes

For some parents with children with autism, it is feasible to keep their children in their home well into adulthood. It is fantastic when that happens but it is not the story for all families.

It is not the story for our family.

In some cases, the situation calls for the child to go into a group home. It is not an easy decision, but it is sometimes needed. How do parents who have children in group homes feel about this?

I have not done research into the experiences of other parents, I can only speak of what we went through. Here are five things that we felt during and after the process of having two of our children move into group homes:

1. Desperation. This decision does not come up without a lot of pain beforehand. This does not emerge out of hope of becoming early empty nesters. The situation has to get very bad before parents send their children to a group home.

2. Guilt. Even though logically it seems clear that the child can be better cared for in a group home, the heart does not embrace the decision so easily. Parents can feel like they have betrayed their child. Dropping the child off at the group home for the first time is a heart wrenching experience.

3. Relief. After months or years of dealing with crisis after crisis, there is a sense of relief. Things are not getting broken. Children are not running away or getting physical with other siblings. For the first time in a long time there is a sense of peace.

4. Guilt Again. At first that relief is very nice. But then parents can feel guilty that they are appreciating the relief. Are the parents just being selfish by having the child outside the home? It takes awhile to overcome these feelings.

5. Healing. It is a terrible situation to have to send a (or more than one) child into group home. But over time something good emerges. It is possible to just enjoy your child. There is no resentment about the damage being done to the home or the family. The visits become a wonderful time of enjoying each other. Even if there are some difficult behaviours, they can be endured because they will go back to the group home. Our experience is that we get the best behaviour from our children during their visits.

5 Things Autism Parents Fear About Church

It is not easy for parents of children with autism to start attending church. It is not as simple as just packing the kids in the car and heading out. There is a huge psychological barrier before they even leave their house. Churches should be aware of the fear that parents experience. Here are five things that parents may be afraid of if they do bring their child to church.

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1. Will their child make noise? It is common for children to make noise at what others may consider inappropriate times. That noise may be questions, scripting from movies, moaning, humming or yelping. How will the church respond? Will there be dirty looks? Will they be asked to leave?

2. Will their child be bullied? Just because it is Sunday school does not mean that other children are going to be any more understanding. Children with autism look "normal" and they are easily the targets of teasing.

3. Will their child have a meltdown? An autistic meltdown is much more than a temper tantrum. Sometimes they can be predicted, sometimes they can't. They often happen when expectations are disappointed. There are few things as humiliating as having your child having a public meltdown. We have experienced it many times.

4. Will their child be safe? Some children with autism are flight risks. Stress makes them want to run and to run fast. They are smart and so as soon as an adult turns their head, they are gone. Is bringing the child to church going to put their life in danger?

5. Will their child be treated with respect? Some children with autism who are nonverbal may seem low functioning. Adults do and say things around them assuming the child can't understand. However, these children are often very intelligent and understand everything that is said. All children should be treated with respect, no matter what level of disability they may have.