I have always wondered what I would have done differently with Ethan if I knew then what I know now. What would it be like if there really was time travel? I can almost hear the conversation between the older, wiser me and the younger, scared, lonely me.
Our first conversation would be about the future. The first thing I would say is: “Everything is going to be OK. Your child is going to grow up happy and healthy.” Autism is not always a death sentence. The next most important piece of advice is to listen to the experts and not the expurts. Telling the difference between the two is where the older me is also an expert. Other parents who have travelled the road before you are the battle wary experts that you should seek out, as their advice is the most valuable. Surround yourself with experts but remember that you are the final decision maker and if their advice does not gel with your gut, DO NOT FOLLOW IT.
The road ahead is going to be long, hard, slow and bumpy, but don’t give up.
Our next conversation would be about food and the body. This is a tough one, because I know the younger me is going to fight me the same way I fought my husband about gluten free. It sounds like such gobbledygook that it cannot be true. But after years of experience, not only with my own child but with many others, I know that food does affect our behavior. Some behaviors are mild and tolerable and others can be life altering. I would advise the younger me to do a food allergy test and completely eliminate all foods that are bad for my child.
We put Ethan on a gluten free diet after a blood test when he was 4 years old. After a few short weeks, he started sleeping through the night and stopped poking his belly. We then knew, gluten was hurting him. Unfortunately, it took us another 4 years to learn about dairy (or casein). And dairy was worse than gluten. After we removed dairy from his diet, his focus, memory, and concentration levels all increased and it became easier for him to learn.
If your child is a visual learner, like many non-verbal kids, then teach them as a visual learner. Expect them to learn nonlinearly. Don’t waste time with touch your nose/hands/eyes and imitation. If they’re nonverbal or slightly verbal, teach him to type before anything else. The typical autistic development is reading then speech as opposed to typical development which is speech then reading. As soon as they can communicate, all the stresses melt away and they are able to learn a lot. Expect more and achieve more.
Another conversation we would have is about exercise. Ethan currently goes for a 1.5 to 2 hour walk every day. He does this in the morning before he starts working/learning. It does not matter if it is OT, PE or PT as long as he moves for an extended period everyday, he is more relaxed and able to concentrate and work for the rest of the day.
My final conversation on this trip would be about acceptance. We lost contact with many family and friends because of autism. They were either ashamed to be associated with us or they feared that autism was contagious and would harm their children. We have been ridiculed and stared at. Acceptance begins with us. Once you find inner peace everything will fall into place. The ignorance and intolerance will no longer effect you. You will begin to realize that you are now part of a larger more supporting family, your autism family. The fact that 1 in 65 boys is diagnosed with autism is a frightening statistic but at the same time it also means that your new extended family is growing and they will always accept you. As we grow in numbers so will our strength grow and we will finally bring understanding and acceptance into this world.
God Bless each and every one of you and your families. Let’s all have a great 2015!
By Dalia Shkedy – Ethan’s Mom