an autism journey

Today, is the last day of April. As Autism Awareness month comes to a close, I want to take a moment to help you understand what all families of children with autism (any special need for that matter)NEED for you to know.

First of all, we LOVE our children. They may not develop at the same rate as neurotypical children, but it doesn’t matter to us what the timetables are supposed to be. We take joy and delight in each and every achievement they make. Each and every child has their own gifts, talents, and abilities. They are our pride and joy. No matter how severe their disability, each of our children know how to receive love and know how to give it…. As a matter of fact, I would argue they know how to give and accept love better than most people in our society. They don’t base their love on what a person can do for them, they simply love the person for who they are…unconditionally.

Therefore, it not only hurts our children when they are made fun of or criticized. It hurts us, deeply. It hurts equally as bad when they are just ignored. Please accept our children just as you would any other child and teach your children to do the same. If we want society to be better than it is now… we can only judge by how society treats its individuals that make up that society. Only by teaching our children by example, will the world ever change. It is not ok for our children to be bullied. It is not ok for them to be treated like second rate citizens and it is not ok for them to be ignored. They are an important part of this society and have a great deal to contribute…. at home, at school, at church, in the community. Do not stand in the way of them doing so. If however, someone does stand in their way of getting respect, treatment, an education, medical care, or simply being accepted…. We as parents WILL come out fighting. It is in our nature. Even a wild animal has an instinct to protect its young.  All the more as human parents, it is in our nature to fight for our children. That means we may lose our tempers, we may say and do things that might seem extreme, we may even be downright nasty if need be. If you are not part of the solution, step aside, out of the way as we do what we need to do. You have been forewarned.

Second, do not judge our children by what you see in brief encounters with them. You do not know what our children go through. You do not know what the day has been like. For that matter, we as parents may not even entirely know what is going on for them, since some of our children can’t express that to us. Imagine for a moment if the world seemed overwhelming and chaotic and you could not speak a word to tell what was going on. You couldn’t tell if you had a toothache or were sick. You couldn’t tell if the kid beside you hit you when no one was looking. You couldn’t even say… I need a drink of water…  I am hot… I am hungry. Put yourself in their shoes for just a moment. They are doing the best they can. These are awesome kids who are just trying to cope and communicate and handle the world around them. They may act out aggressively. They may scream, cry, or fall apart. They may throw things or tear something up. They may get a little loud at the library or cause a scene at the mall. Please try a little compassion before you judge.  Let us as parents handle it the way we feel is best for them. They are not undisciplined, they are not bad children, and we are not bad parents….. we might choose to hug them rather than punish, we might ignore the behavior all together or we might take them completely out of the environment they are in. That is for us to decide. Your offer of help would be greatly appreciated but NOT your advice on how you think we should handle it differently.

Third, don’t judge us as parents. I am just going to say it flat out. We put all our time and energy into our children. They require a lot. Some of us are full time caregivers. Our children may need help feeding themselves, dressing themselves, bathing, they may not be potty trained. Some of us have to work full time jobs while still caring for our children. Some of us may be teaching our children at home because the school doesn’t have adequate services. Many of us can’t get babysitters. Some of us have not been out alone with our spouse in 6 years (not that I know that person). Our children have doctor’s appointments and multiple therapy visits to keep up with on a weekly basis. We have IEP meetings to attend. We are filling out forms to find resources to help. We are studying up on the latest therapies and treatments. We have other children in our homes that we are trying to give equal attention to so that they do not feel neglected themselves. We may not have had a full nights sleep in years. WE ARE BUSY. WE ARE TIRED. WE ARE STRESSED. That means that our dishes may still be in the sink from last night’s dinner, our laundry maybe piled up, our house might not be painted, our lawns may not get mowed as often as the neighbor’s, we might even go out in sweatpants without doing our hair (shoot we might not have even had a haircut in the past year). We might eat way too much take out and we might not make it to everyone (or any) of friends and family events.  Deal with it. We as parents have put every ounce of energy into our children. They are our priority. Not our house. Not our yards. Not our appearance. Our children. Period. End of story. If you don’t like it, offer to help or stay quiet, but please don’t judge. Your criticism will not give us any more time to get those things done, it will only make us feel guilty for what we aren’t able to do. The fact is we cannot do it all. We are making the right choice to put what we have into our children. Your support and understanding would be far more helpful than your judgments.

The thing is this…. We want the same things you want. We want our children to be happy. If you can take the time to understand what autism is and what it means for our children… what it means for us, then I am pretty sure you will view us and our families a little more appropriately. That is all we ask (that and chocolate… but that is a different story).


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