Being Needed.

There are things about my son that I learn every day.  Even though I continue to learn, I, as a parent, have a repository of knowledge about him that is unparalleled on Earth.  Think about it.  Who knows your child better than you (especially a young child)?  As parents, we are with our child from the moment they enter this world until they are grown and/or have moved out. Even then, sometimes we continue to be the ones who know them best.

Despite the fact that they grow and share new information and memories with others, we still see them every day during childhood.  We know their needs and wants, morning and night.  We know what they like to eat, how much they sleep, what they like to do and not do, what they need for basic survival, and how to help them cope.  Doubly so for a special needs child.

Every single day of his life, my son must use some kind of a coping mechanism and push his way through a world that does not understand him.  He must tackle or dodge hundreds of sensory under and overloads and miscommunications.  He is inundated with sounds and feelings that are difficult for his brain to process.  He has issues related to balance, depth perception, understanding size and his body’s place in space.   He has all these issues going on his head at the same time he is struggling to communicate what they are.

He cannot get the words out to express what he needs to express. On the one hand he is bombarded with too much sensory input from sounds.  On the other hand, he lacks sensory perception of his body in relation to things.  He runs into walls on purpose with a body slam to test his depth perception.  He is, for all purposes, trapped inside this little body that is under sensory attacks unable to tell me because he cannot find the words to communicate the story.

Over the years, I have come to learn his language.  I’ve learned to read his face and body.  I know when he last ate or drank so I can assume when he might be hungry or have to use the bathroom.  I know what foods and drinks he will or can consume and what will make him sick to his stomach.  I know to cut the tags out of his clothes and not to give him buttons or laces or shoes that are too tight.  I know when he’s had heavy physical work that will calm him down.

I know how to comb his hair and brush his teeth so he does not scream in pain.  We always use cold water to wash his hands because of sensitivity to even the most tepid of temperatures.  I know which toys must be put away and which can come out for play, what books to read, what TV shows and movies may be watched and what songs can be sung without sensory issues.

I recognize when he is tired,  how to make the bath time palatable, and how to soothe the pains and boo-boos any other child can get.  I know certain phrases that he says which are completely unrelated to an emotion or need, and know to which emotion or need I must attend.

I know that my child is but one, on a spectrum, and that each child and his or her manifestations of autism are different.  I cannot speak for anyone else.  I’ve heard other ASD children do not miss their parents when they are absent for a while.  But, with my son, what I see is that he misses me when I’m gone.

I think that he sees a value to my understanding of him, and for that, I am loved.  I read this in his face and his behavior.  In this swirling sea of confusion of his world, I can pull him out and give him a safe harbor until the next storm.  A place of happiness and rest.

When I must leave, even if others are present to help him weather a sensory storm, he still wants me.  He wants me to comfort him, to talk to him and rock him, to hold him and tell him it will be okay.  In his mommy’s arms, he finds peace, trust and calm.  It may take a while but we struggle through it together.

Others have talked him through storms.  His daddy, his therapists and his Jessica, when I am not there.  He makes it through.

But the separation from me is hard on him.  When it is hard on him, it is hard on me.  We have been through so many storms together that we’ve found what works for us.  Sometimes it is utter removal of as many sensory stimulants as possible.  Time to slow down the overload.  To scream, cry, echo, sniff, sob, scream again and lie down.  To fray every nerve.  Then to catch our breath, pick ourselves up, clean ourselves off and start again as though it never happened.  Except it did and we both know it.  We accumulate a history.  A history that builds another layer of love, trust and bonding.

As he grows older, I hope he will gain an understanding that he can make it through these storms without my presence.  He will have to do so.  For now, I let him hold his stuffed animals, give them a kiss and snuggle with mommy.  Trust and love come now.  The other stuff can wait.

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