In the world of autism, there are ups and downs. I prefer to share the ups. That is what I want to dwell on… the good things that happen, and there have been plenty of them lately. My son has made tremendous progress this past year. I have found new ways to connect with him, his language is improving, and his personality is shining through. These are the things I want to focus on…. The things that give me hope and make the day a little easier to carry on. The ups are just so much easier to talk about…. And the lows, well they are at times just so low, they are difficult to share. The reality is however, that there are plenty of lows.
This week has been hard, very hard. Skills we thought we had mastered seem to be challenging again. It is an ugly word at my house… regression. Maybe he doesn’t feel well, maybe something is bothering him. I don’t know. He doesn’t have the communication skills to tell me. Although I feel a deep bond with my son…. A connection so deep that it is unexplainable…. I still can’t possibly read his mind to understand all that he can’t say… all that he would like for me to know. That breaks my heart.
This week, he is unhappy and he is angry. It is tough to see him this way and feel so helpless. He knows. He knows what is happening to him and he can’t stop it. He reacts with anger. Not the kind of spoiled, “I didn’t get my way” anger. It is the “I am so tired and lost and hurting and don’t know what to do” anger. He falls apart, and then he cries and places that little hand on my face and says….”what happened?” He looks at me longing to understand what is happening to him and I am at a loss to explain it and I lose it. I hold him and cry with him, simply because I don’t know what else to do.
The ugliest thing about autism is it often causes depression. It causes anxiety. It causes anger. It causes pain, and loneliness, and hurt. Yes, even to a young child.
So, why am I writing this? I want people to understand the reality of autism. I want other parents facing autism to know we are going through the same things they are. We are fighting like everyone else. In case you haven’t seen it… there are some parents (including a certain celebrity parent) who seem to want to take advantage of the situation for their own gain. Apparently their children were blessed to have such great mothers who fought so hard to “cure” their child…. And now they are making a profit on it, and the rest of us? Well, we are just not doing enough.
Truth is there is no cure. Although some kids respond very well to treatments, others don’t… and dog gone it…. This is one arena where parents should NOT criticize other parents for not doing enough or for choosing one therapy over another. I am fighting hard for my son and I pray with all my heart that God will choose to bring a complete healing to his life, but if he doesn’t heal my son or another child…. It is not because a parent didn’t do enough. If the diet worked for your child, great… count your blessings, if you tried acupuncture or chelation or this therapy or that and were met with success ….. fantastic. You made the choice to do the best for your child. So are the rest of us. Autism affects every child different and so do the treatments. Just because one child is more severe than another, doesn’t mean that their parents did something wrong. Period. (Stepping off my soapbox now)
I also want to make others aware of what autism really is and how it affects a child. My son fell apart in church this morning. It was not a pretty scene. We were fortunate that the few people who witnessed it, were understanding. Not one single person criticized him (or me). Sadly, this is not the norm. It just happened that at that moment, the people who saw it have known him for a long time. They may not always understand, but they accept him through the good and bad. They often don’t know what to do, but that is ok. As a matter of fact, the other teacher in the room this morning was at a complete loss for what to do, so she simply hugged him, told him that she loved him and stepped out of the way to let me help him. That was exactly what both he and I needed at that moment. Too often people stand by witnessing a meltdown and simply judge…..
If you think you understand autism, think again. Try for a brief moment to walk in their shoes, to understand their world. If you have someone you know facing autism. Love them. Accept them. Don’t worry about the right thing to say or do. Just be there.
If you do not know someone with autism, make yourself all the more aware, because you probably actually do know someone with autism…… or at least are around them at the grocery, at the park, at church. Don’t judge them. The current rates for autism are 1 in 88 children. With those odds, it could be your child or grandchild, your niece or nephew, your best’s friend’s child or your neighbor to be the next one diagnosed. Give it a thought before you criticize.
As for us, we will fight on. A new week lies ahead and we put the past week behind, waiting for the next great victory…. It will come. We’ll keep you posted.