Life with an autistic, mostly non-verbal child is extremely rough. If you or anyone you know is going through life with an autistic child, here is a summary to help you understand what their life might be like. Remember that all autistic children are different so this is just one example.
Luke wakes up between 6.30-7.30am. He immediately wants to eat breakfast or bounce on the trampoline. If he slept well the night before, then he is usually quite happy. About once every two weeks, he wakes up in the middle of the night and takes hours to get back to sleep. On those days, he is tired and angry.
Most mornings, he wants toast or crackers or cereal. He actually doesn’t eat much more than toast, crackers, and cereal. We have been going to a food therapist to try and get him to eat other things. It is extremely hard to get him to try new foods.
His current diet consists of:
- Toast – with butter and honey on it. He doesn’t want to eat the crusts though.
- Peanut butter and honey sandwiches – these get really messy though. Lately it seems like he only wants to eat the honey off of it.
- Pasta – only with pesto sauce on it.
- Pizza – he usually wants just the Little Ceasars brand
- Waffle Fries from Chic Fil A
- Pancakes and French Toast
- Crackers, Chips, certain types of Granola Bars
When special needs children only eat a very limited amount of food, they can easily get tired of this same food and then not want to eat it anymore. But they don’t want to try anything new either. This is called a food jag. To avoid food jags, therapists have told me to try and modify the food that he does eat ever so slightly. Make it a “just noticeable difference” in color, taste, presentation, etc. I try to do this, but sometimes it is so hard!!
For example, Luke used to like apples. He would eat them whole. I tried to buy different types of apples, but overtime, he stopped eating apples all together. Ugh.
I am constantly trying to buy different foods and brands so that he doesn’t get stuck on one type of food. But honestly, it is frustrating and sometimes I just want to scream!
Lately I have been trying to help him work up to eating new foods. This is the food diagram that my therapist gave me. Right now, I try to help Luke touch the food to his lips or take a tiny bite of new foods. My therapist recommends not to reward that effort with desired food, but other therapists think that is just fine so do whatever works for you!
Restaurants and Going Places
Luke’s limited diet makes it hard to go places. We usually have to bring some special food just for him. Or we keep going to the same places that we know he will eat from. We could just go wherever we want and starve him until he tries some new food, but autistic kids can be VERY stubborn. My therapist says that he has had children hospitalized because their parents won’t give them their preferred foods and the child refuses to eat anything else. I haven’t tried giving only new foods to Luke for a week to see if he would break down and try something new. But I won’t say I haven’t contemplated this plan several times.
Restaurants can be hard with Luke though because he has a hard time staying still. Recently we went to a lodge up in the mountains. There were only two families in the room; all the other tables were empty. We were with Ian’s extended family. I tried to get Luke to eat, but he kept wandering around the room for a few minutes at a time and then he would come back to us and check in. Right when we got our food and were about to dig in, the waiter/chef came up to us and said “Hey we can’t have him putting his hands in his pants and touching all the tables.”
Ian and I both felt so embarrassed and sad. Ian took him outside while I ate, and then we brought home the food for Ian to eat later. It was just another reminder that we couldn’t quite live a normal life with Luke. We couldn’t enjoy normal things like going to a restaurant with his family. At least not yet. Obviously we will keep trying to teach Luke to fit in.
Luke can’t really communicate very well. He will say about 10 different sounds/words. But mostly he likes to grab you by the hand and try to push you where he wants you to go. When we meet new people, they often ask him “Hi what’s your name?” He has never answered that question. I always have to answer it. Sometimes that gets hard. I actually don’t really like meeting new people anymore because there is so much to explain.
I think it would be easier if he had some sort of physical sign showing he was disabled. Like Down’s syndrome. But Luke looks exactly normal. He just doesn’t talk, makes weird noises, and sometimes flaps his hands.
It is hard to know how much he understands. He understands some phrases and words when they are repeated a lot. But other times he seems to have no idea what I am saying. It is extremely frustrating.
Luke asks for food by going over to the refrigerator or pantry and grunting. We have worked really hard on getting him to say some words. Right now he will say “Ah” for “up” to be picked up so that he can reach what food he wants. He can also say “ga” for “Go” to go outside or “Oww” for “out” to have us open the back door. He says “kaka” for cracker and “mmm” sometimes for milk. But usually we have to prompt him to say these things.
His teachers at school have heard him say about 20-30 different words at different times. But he really doesn’t want to use those words on a consistent basis. You have to pull them out of him. We hold up a cookie and say “Coo…kie”. He will say “KAh” and “eee” if we try long enough.
Honestly, his communication is exasperating at times. He will learn a word like “chip” and be able to say it well for a few months. And then something will change and he won’t want to say it anymore! I admit that my motivation and commitment to keep working on words is a challenge. Sometimes I feel so depressed about his communication skills.
Getting to sleep and staying asleep can be very challenging for autistic kids. Luke was always a pretty good sleeper until about 2 years old. But now, we usually have to give him .25 mg of melatonin every night to help him calm down and fall asleep.
And he doesn’t usually sleep in a bed like this picture. He doesn’t understand how to use pillows and blankets like a normal person. He just sleep all over the bed where he wants like this:
And then about once a week or once every two weeks, he wakes up in the middle of the night and can’t go back to sleep for a few hours. We don’t really know why he wakes up. He never seems upset. He just seems ready to go and wide awake. We usually have to give him more melatonin when he wakes up, or just let him wear himself out in his room for a few hours before he goes back to sleep.
My son Luke struggles to play. He doesn’t really play with toys very well. He mostly like to put toys in his mouth and see what they feel like. He doesn’t interact with other children. If they talk to him, he ignores them. But sometimes he will watch what they are doing and want to be in the same area as them.
His lack of playing makes it hard to know what to do with him all day! Luke likes very physical play. He wants you to bounce on the trampoline, swing him, or rough house. He doesn’t want to sit and stack blocks, play with cars on a track, or do legos. He doesn’t even like to watch movies very much anymore. So his days usually consist of going to parks and roaming around the house getting into stuff.
Luke goes to a lot of therapies. It can be both time-consuming and frustrating and invigorating and fun. He has speech therapy where we work on helping him communicate. He has food therapy where we work on trying new foods and textures. He has occupational therapy where we work on interacting with people and functioning in daily life. He goes to 30 hours of ABA therapy/school where he works on all of these things.
A note on ABA therapy: there are many different types of ABA therapy. Some are more strict than others. Some use DTT for everything. DTT is Distinct Trial Training where they sit the child down and run drill after drill. It is not the most effective therapy. Try to get a company that does more PRT (Pivotal Response Training). PRT uses more natural reinforcement, instead of artificially giving a child a treat every time they do something good. If you have options other than ABA in your area (like a company that uses Floortime techniques or the Denver Early Start Model), I would look into them. I use ABA because I need a break and there is no better option in my area.
Sometimes I feel so drained after therapies. Sometimes I feel like I can’t do it all. I can’t possibly do everything the therapist tells me to do. I just have no more energy. Other days, when the therapist says that they see progress in Luke, I feel elated. In this way, having an autistic son feel like being on an emotional roller coaster.
Life with an autistic nonverbal child is not easy. Sometimes it feels like my burdens with Luke are too much to bear. How can one child struggle with talking, eating, sleeping, and playing? He struggles with everything! We have to do intense therapies and problem solving for everything!
But I sincerely hope that through all of this, I will learn. I am learning patience and love everyday.