I think the thing that has hurt me the most about Jonathon's autism is the total blankness and incomprehension that I have seen in his eyes every time a candid photo was taken of him. He has this "deer in the headlights" look, like he cannot quite understand why the world is looking at him like they are. He retains this same "look" whenever we try to explain a complicated thought or idea. You can see that he really wants to understand, but something is not quite clicking into place.
I see all of this and I hurt. Sometimes the hurt is so vicious that it feels like a knife is twisting deep inside of me. The pain never quite goes away. Every time that I think that I have dealt with it more efficiently than the last time, it comes back to me when I catch a glance of that slightly unfocused look or that bewildered little frown that mars an otherwise perfect face. When I see him loping down the hallway at school with his slightly uneven gait, I want to run down the hall beside him and gather him in my arms. When I see other kids ignore him or make fun of him because he doesn't look or act like they do, I want to lash out and annihilate those that would hurt one so precious as he. Why can't they see his sunny smile and sweet personality instead of his stilted language capabilities and repetitive ways? I know most of it is because they are simply selfish children doing only what selfish children do; but I feel that if their parents taught compassion in the home and demonstrated this daily, wouldn't they follow by example?
My heart has splintered time and again in many and various ways as far as all of my sons are concerned. But with my other two, I know that they are able to bounce back, and if necessary, retaliate without any help from their mother. On the other hand, I have seen Jonathon follow a child down the hall at school, trying to get the child to talk to him, calling out the child's name several times, and never once does the child turn and acknowledge the fact that my beautiful baby is standing there behind him. This tears at my heart until I feel like I am bleeding on a daily basis. Why do I have to feel this pain so intensely on the behalf of my child?
I have come to the conclusion that I feel my son's pain because I am human. But it is not nearly as powerful as what our Heavenly Father feels when He sees Jonathon being hurt. I have to remind myself daily that Jonathon is not alone out there, that Jesus is constantly by his side, comforting him and protecting him from all of the pain. The more I observe my precious boy the more I realize that Jesus, in some ways, has allowed Jonathon not to know when he is being made fun of. To Jonathon, everyone is his friend-no one is the enemy. When the kids in the hall do not answer him, he just turns around with a brilliant smile like nothing ever happened.
The Lord has promised that He will never leave us or forsake us, and I have to believe that this is even true for those, like Jonathon, who need the protection of the Almighty. These children do not know or care when they are snubbed or ignored by those around them because God carries them around daily in His pocket, surrounding them with childlike wonder for the cynical world that surrounds them.
Jesus, I give Jonathon to you once again. He has always been Yours, even though I try to take him back on a daily basis. I know that You, being his Heavenly Father, can take care of him much better then I as his earthly mother. Protect him and keep him. Surround him with Your love and all of Your understanding. And let me, through the revelation of my intense hurt for my disabled son, be able to reach out to someone else who feels the same pain or worse. You have been the only comfort that I have had through many screaming nights and days-only You truly understand everything and why. Will You tell me "why" when I see You face-to-face? Or will it truly not matter when I step into Your presence, never to leave again when we cross over into the threshold of heaven? Because I know that Jonathon will truly then be hurt free.
Today, once again, they have told me that something is wrong with Jonathon. The diagnostician told me that Jonathon is testing at the level of mental retardation, and that they, the professionals, will give him a three year span of time to prove them wrong with our doctor's approval. They will not put this label on him until he is older and they can do more testing.
I understand what they say intellectually, but inside my spirit is quite broken. I have struggled so long with Jonathon just to get him to the point where he is right now. It does not seem fair that the little guy will have so much more to overcome. He is developing, but it is like pulling teeth. It is so slow compared to others his age. The frustration in Jonathon is quite evident at times-he will grit his teeth until you think that they are going to fall out. He also falls on the ground and throws himself and screams. And underneath all of this, you can sense the frustration. He wants to do so much, but yet at times, the climbing of his small mountains seems impossible.
Sixteen years ago, when Jonathon was two years old, a developmental psychologist told us that Jonathon would probably never talk, walk right, or ride a bicycle. In September of 1996, a pediatric neurologist informed us that Jonathon fit into the category of PDDNOS-Pervasive Developmental Disorder Not Otherwise Specified. Jonathon was diagnosed in this manner because there was no other category for him to be placed. He presented to the doctor signs of a mildly autistic child, but there was no formal title or placement for that diagnosis. Jonathon showed difficulty in both his gross and fine motor skills; it was almost as if there was a part of his brain that was not firing correctly. But against all odds, Jonathon has succeeded. He has an extremely large vocabulary with lots of repetition, but he has accomplished each task set before him. He even rides a regular bike better than many children his age. I know that in God, all things are possible. If God never gave me another miracle for Jonathon, it would be all right. But there is still something inside of me that refuses to accept that Jonathon will not have a full and challenging life. There is still that one small flicker of light at the end of the tunnel that impels me to push Jonathon. His potential, in my eyes and in the eyes of the Lord, is limitless.
People tell me that I am not objective enough about Jonathon's potential- that I need to accept his limitations and go on with my life. And I do understand that there are certain coping mechanisms I must teach him in order to help Jonathon learn to deal with the world around him. I need to teach him that life is not fair, and that people are especially cruel to those they feel are weaker. I need to make sure that he realizes that he is accepted at home no matter what happens in his day-to-day life. I also need to teach him that in the eyes of God, he is absolutely perfect. God made him a "one of a kind" kind of child, and these special children only are given to those who are chosen for the special task. And the most important thing that Jonathon must be taught is that nothing is impossible. With God's help, Jonathon's potential is limitless.
Life still continues no matter how much you want it to stop so that you can get off for a while. Jonathon still has days where he screams for hours at a time if he has become overwhelmed by his day. And there are days that seem endless because of the constant chore of "keeping up with Jonathon"; however, we also endeavor to keep Jonathon and our other children as busy as possible. Jonathon attended, for many years, occupational and speech therapy twice a week at our local rehabilitation center. We also chose not to place him on Ritalin or Adderall because he never presented himself a threat to others or himself. We finally brought Jonathon and his two brotherís home seven years ago to homeschool. Jonathon, at 18, is thriving and happy, and we have never looked back.
We can only take one day at a time and live it to the fullest, and then attack the next day in the same manner. We, as the parents of the challenged, cannot give in and quit on our children. We must remain strong, never wavering to the left or the right, becoming ever increasingly steadier as we go forward. We and we alone are the ultimate defenders of our special children. God gave them to us because He knew we could take care of them best. We must stick to the impossible road that God has placed in front of us and remember that all things are possible. After all, faith is the substance of things hoped for and of potential not yet seen.