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How having children with autism affects my life

Through all his life’s experiences, Rob has experienced that God is “very merciful, and full of compassion.”

Having five children with autism comes with its fair share of challenges. But Rob and his wife Mary have a rest and unshakeable faith in God who holds their lives in His hand. Here Rob tells their story:

“Your daughter has autism.”

I remembering sitting with my wife Mary, feeling numb, as the psychologist delivered her diagnosis of our 4-year-old daughter.

The doctor wasn’t done yet, either. “And we recommend that you have all of your other children tested as soon as possible.”

Her recommendation proved necessary. Over the subsequent months, the rest of our five children were also diagnosed with autism spectrum disorders, one after another.

On the day we got the official diagnosis that all of our kids had autism it was a shock, but also somewhat of a relief, because it gave answers for a lot of questions we had about our children’s development. I remember sitting with my wife in a coffee shop  and thinking “What next? How are we going to deal with this?” We were kind of numb, and didn’t really understand the enormity of it all.

Be anxious for nothing

Right from the beginning of the diagnosis we found that we didn’t really know where to turn. There were many options for help and assistance, but there were also a lot of obstacles to get access to these services. It’s written in Philippians 4:6-7 that we should “Be anxious for nothing, but in everything with prayer and supplication, with thanksgiving, let your requests be made known to God.”

Trusting in God does not mean sitting idly and waiting for a miracle. You still have to work for your children’s best; try the doors and see what opens, etc. But it does mean that you can do this with an inner peace that God is in control and will meet the needs at the right time. The hard part is the inner peace! For that, God had to work in us, and we had to consciously choose to place our trust in God when temptations to anxiety came.

What we found then was that the doors opened for us at the right time. We knew that there were many praying for us, and God listens to those prayers – what we had to do was learn patience and to trust in God, while pursuing all available options.

Grief is not self pity

When I realized that my children would never have a “normal” life, then I felt a tremendous sense of loss. It’s not the same as losing a child, because my children are alive and are happy. But they will never experience life the way others their own age will. They are growing up, and I have friends with kids that are similar ages, and they go on trips, have lots of fun, etc. My kids will never be a part of that. I don’t think it bothers them so much, but it’s hard for me.

Autism isn’t a situation that will go away as the kids grow. It’s a lifelong thing, and sometimes I do feel pain. I can’t understand with my reasoning why God chose this situation for my family. But it is written, and I know from experience, that God works all things together for the best for those who love God. I sometimes think about the Sermon on the Mount where Jesus speaks about the man who built his house on the rock (Matthew 7:24-25). The storms came and the waves crashed against the rocks but it stood firm. I have a firm faith in God’s perfect guidance as a foundation, and that is what holds me up in the storms of life. I know that I couldn’t stand if I didn’t believe in that.

There is a difference between having sorrow and grief, and feeling sorry for myself – this distinction is important. Sorrow and grief are very normal human emotions, and love often leads to these, when I see those I love suffer.

But self-pity is something that has only to do with me – it is selfish, self-seeking, and very far away from what Paul writes about love in 1 Corinthians 13. So, while I feel sorrow for my kids, I can’t give in to the thoughts of self-pity. “Resist the devil, and he will flee from you.” James 4:7. That is also true for self-pity.

Many times, I have been, and still am, tempted to feel sorry for myself and my children. The solution for that is the same as any other temptation: I use the words of my Master, which are every day to deny myself, take up my cross, and follow Him. (Luke 9:23)

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Seeing the needs of others

The temptation to consider your own needs instead of the children – and your spouse – is very strong. There is a stress factor when you have disabled children which is very high. With autistic children, you need to be continually alert for them doing things that endanger themselves or others.

One of our children is a flight risk, and has run away from home several times. We have to be alert constantly, even in the night. As the children have gotten bigger and stronger, the load has also started to shift more to me. In some cases Mary isn’t physically able to manage any more.

This can wear you out after a while. Then thoughts of “Why don’t I ever get a break?” start to come. The thought to blame Mary for not doing more – as terribly unjust as that is – also arises. I realized that I had a lot of demands that have nothing to do with love. I should be supporting her and helping her instead of thinking, “Why do I have to do this now?” We have had to learn to communicate with each other. I am a very closed person by nature. But, we both want to live according to Jesus’ teachings. Our situation has drawn us together rather than apart, and the result is that it has become much more open and easier for us to talk about things than it was before.

A verse that has spoken to me many times in these situations is 1 Peter 5:6. “Humble yourself under the mighty hand of God and He will exalt you in due time.” When you have to learn to do things that don’t come naturally, then sometimes you feel that God’s hand is really over you. Then all you can do is humble yourself, and say, “I don’t know why I have to go through this, but I know I have to be obedient without understanding.” People who do that get grace over their life, and their situation doesn’t destroy them.

Having a vision in my daily life

You must have a vision – you must see beyond the everyday situations that you live in. Because if you only see your circumstances and your difficulties, then life is hard and heavy. God is not against you, but He has a work he wants to do in your life.  In Romans 8:28 it says that God works all things together for the best for those who love Him, and in the next verse it says that those whom He foreknew, He called so that they could be conformed to the image of His Son. God is using the situation I am in with my family to conform me to the image of His Son. When you only see with your senses and your logical thoughts about all the complications, then you just become a miserable, unhappy person. But when you have a vision for the transforming work God can do through the situation and think what is going to come from it, both here and in the world to come, then it is easier to bear.

People sometimes pity us because we have children who have disabilities. But the truth is that God has blessed me with my kids. My older boys are really good boys. And my younger kids are warm and friendly and interesting and amusing and they really lighten my days. They wear me out too, but I have joy from those kids. So, it’s not like God has given me something really terrible and hard to bear.

God’s goodness goes far beyond our understanding, and His intention is to save us completely. We don’t know what we need to be saved from – but He does, and He is as gentle as possible. These situations are not punishment! They are rather a chance for God to show His goodness and His power. Consider what is written in James 5:11 about Job. Through that extremely difficult situation, God demonstrated that He was “very merciful and full of compassion.”  Job came to know that at the end, and I have also experienced the same.

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