Well, just like I knew it would, autism came back to slap us in the face today as if to taunt us by saying, “I am still here! I am not going anywhere!” When dealing with autism, there are good days and bad. Perhaps that is just life. Sadly, for every day that is really good, there is an equal amount (if not more) of days where autism just plain stinks. Today is one of those days.
We went to church this morning, just like we do every Sunday morning, trying our best to add normalcy to our lives. However, the people, the sounds, the sights, the expectations, it was all too much today. Samuel spent most of the morning in the preschool room sitting in my lap clinging to me with his hands over his ears and his head buried in my chest while the other children played, and talked, and laughed. He tried, he really did. He even attempted to play with a couple of the other little boys in the room, not an easy task for him, but WHAM… there it was to smack him back into reality… AUTISM. He just wasn’t sure how to connect. The other boys, bless their hearts, they tried too, but it is very hard for kids aged 3-5 to understand why when they talk to the boy beside them, he won’t answer, why he makes odd noises, why he flicks his hands, and taps the toys.. and so they move on. They leave behind a very lonely child so wanting a friend, a playmate… a child wanting to fit in and find his place in the world.
Then came music time….ugh… an especially difficult thing right now. Samuel has always loved music, until recently. He still loves to sing and for someone to sing to him, just don’t add any sort of instrument or cd to it. I don’t know if it is the frequency or the added chaos that it brings, but it is too much. On top of that, it is hard to keep preschoolers down and so the others get a bit excited during music as they sing and jump and dance around…. Another ‘no no’ right now. Samuel prefers everyone sit in their own quiet space… not too awful close to his space. Big sister had to come to the rescue to take him away from the group for a few quiet moments and a few tight hugs. Thank goodness for a big sister who understands what her brother needs.
And so the day went on… no matter what he tried to do, it was a challenge today… everything just seemed too tough until he finally just gave into the tears that he had been fighting back all day and he cried… and cried… and cried. The horrible crying that just comes from a child knowing how hard the world really is… the kind you just can’t console, the kind that truly breaks your heart, because you just can’t make it better. And so his dad and I just held him and told him we loved him and we would always be here for him. You can’t tell a child with autism that everything is going to be ok, because it is probably not going to ever all be ok. You can’t tell them to just cheer up. You can’t bribe away the sadness with candy or cookies (although the offer never hurts). Children with autism know real hurt, real sadness, real loneliness, real pain. Something a 5 year old just shouldn’t know. Worst of all a child with limited communication skills can’t even talk about it. It leaves the child insecure and frustrated and mom and dad helpless.
So… today was just about surviving. It was not a thriving day…. Just a surviving day. But, maybe, that in itself is a victory. Today, my son survived autism. That will have to be good enough. Tomorrow, we will try again to thrive.