Parenting a special needs child

I came across a blog today that belongs to a parent of another child that attends the same therapy center as Jayen. I'm floored and can't stop crying at the stuggles we all face having a child with special needs. Her words were so powerful and I felt that they also pertained to my child. Although they have separate needs, they are both special.

"He is 4.  He is not mean by nature.  He is independent and curious.  He doesn't stop once he is rolling with a decision to consider the consequences.  This is typical behavior in a four year old! Children repeat what they hear.  We should all be mindful about what we say and the ears that hear it.  "CHILD'S NAME" is not a mean child.  His hugs are powerful.  His smile magnetic.  His laugh contagious.  He is unsure of his body mass in relation to that of others.  He feels little pain or pressure so seeks out the constant touch and it seems rough.  We work every day on boundaries and gentle touches. ....  Our lives are like the ocean... constantly moving.  It is hard on him and on us ~ none of us in this house know what will happen when morning comes and sometimes we go hour by hour.  And yet we keep going and do our best.   And we appreciate when someone stops and really asks what is happening and what it means and how it is.  We appreciate the non-judging curiosity of how it must be for us.  Because that is how we learned ... we asked."

Jayen looks and sometimes acts like a typical child, but he is anything but! We can't make decisions days/weeks/months in advance. We try to plan activities and outings, but things often change in a very short amount of time. I feel lately like we have let down a lot of family and friends and I am so sorry. I wish I could explain to you how hard life with a special needs child is. I never knew life was going to be like this.