The Thick of It

Frustration and exhaustion

That is what I feel after two days of the seemingly constant need for sound that Matt has. From the time he awakes until the time he sleeps he is making sound. He is either talking loudly, stomping, yelling, banging, singing or humming.

My husband and I remind each other that this is sensory. He is doing this because this is how he is relating to the world. He isn't stimulated through sight so he is making up for it by making sound.
Reminding each other of this does not make it easier but it helps to have someone to talk to about it.
We thought by the time he was five, he would settle down a little. An expectation we shouldn't have set up. We take turns handling his needs. This boy does not nap and he is very demanding.
Matteo is afraid of being alone so he follows us around the house from room to room with his noise.
Some days I lock myself in the bathroom just to get a break. It is not long before he is there at the door banging and yelling for me to let him in.

Then there are the quiet moments. The times when he is sitting in my lap and listening to me read him a book. There are the times when he snuggles under a blanket and watches one of his favorite shows on his Nabi (making some sound but not so loud) Or when he cuddles with me and falls asleep.
         
I remember when he was much younger, his pediatrician told us she was relieved that he was our son. She felt like if there were any parents who had the strength to raise this difficult child with love and care it was us. She was right you know. What gets us through each day is the overwhelming love that we have for him and our wanting him to have the very best quality of life. I sometimes just look at him and take in his beauty. I admire his intelligence and strength and patience.

So although I cry. I hide at times. I sometimes ignore him when his need isn't urgent. I have learned not to get upset when he bangs into me or hits me with something because he isn't able to see me. I cuddle with him as much as possible. Tell him how much I love him and how much of a joy he is. I practice patience with showing him skills for his independence. 

This is OUR journey and we are in the thick of it but I wouldn't change it for anything else.