Friday, November 19, 2010


In parenting, specifically parenting children that come with uncertain history and, for lack of a better word, "baggage", we all like to try and make it appear that we've got it all together.  I know I try - not only to appear that way, but really keep it all together.  E has provided us with challenges ever since he giggled his way into our hearts on April 24th, 2007.  He had some obvious, albeit minor medical problems.  As the months went on, it became clear that he had some not so obvious emotional and neurologic problems.  The years have passed and we have worked diligently at responding to his needs and giving him the space, the resources, and encouragement he needs to thrive - even if that means he doesn't follow any sort of predictable (aka "normal") course.  He has done well overall, has made tremendous progress and overcome many obstacles. 

Early this Spring he underwent extensive neuropsychological evaluations at the recommendation of his neurologist.  To back up a bit, his neurologist is certain that he has neuro damage, the extent of which or the etiology of, we are uncertain.  It has been her feeling that putting him through an MRI, EEG, etc., wouldn't change our course, so why subject him to it.  Anyway, the neuropsych eval revealed that he definitely has Sensory Processing Disorder and most probably ADHD.  She gave us recommendations and we have followed them.  He's continued to grow leaps and bound in cognitive development, but lately, has begun to regress emotionally/socially.  It's difficult when you have to try to explain these types of "hidden" problems to people who don't live it.  People are quick to write behavioral issues off to a child being unmanageable, a product of bad parenting, or "just being 4 1/2."  With a child like M, you can rattle off the laundry list of medical diagnoses that explain her problems.  They are tangible and people accept them even if they don't understand them.  E's issues go much deeper, are more complicated, and are very obviously tied to his SPD.  Lately he has had very adverse reactions to things that six months ago didn't bother him.  He can't stand to have his nails trimmed, his ears cleaned, his teeth brushed.  He picks at his food and won't eat anything that has "spots" on it, is a certain color, or is of an undesirable texture.  He is having strong reactions to sounds and odors.  He is afraid of the dark, afraid of the house falling down, afraid of storms, afraid that everyone's going to leave him.  He panics if there is a mark on his skin, a scratch, bruise, paint/marker.  No one should have to live with that much fear - especially not an innocent child.  Initially, I tried to write it off as a phase or as him just testing his limits.  Now I see that, selfishly, I was probably trying to avoid admitting that he very possibly is regressing or having new issues.

Yesterday, I took him for a haircut.  For about the last year, he has done great!  It's not his favorite activity by any stretch, but he has tolerated it.  He sits, gets his hair cut, plays with the water bottle and leaves with a sucker and a smile on his face.  Yesterday, he went into a full-blown panic almost immediately after the girl started.  He was screaming, swinging, trembling - saying it hurt.  It took me back to his first 2 years of haircuts when it was a 4-man job.  I guess that was my slap in the face wake up call.  I have requested an emergent appointment with his neuropsych (which will, unfortunately, probably land us an appointment in Feb). 

It infuriates me to no end that something most likely happened during his first year of life that caused damage to his brain and caused these problems.  You hope that you can just love your kids enough to give them eternal happiness, but sometimes, love is not enough.  I hate watching him struggle.  I hate that he has to work harder than anyone else to get his body to do what he wants it to do.  I hate that people don't understand him.  I hate that I don't have all the answers.  I hate that I can't shelter him or make it all better.  I know we have to address these problems.  He is a kiddo that is so smart, so funny and so full of spirit.  I don't want anything to get in the way of that.

Please keep our little monkey in your prayers.


Linda Schuhmacher said...


Dan & I fully understand as we also have the unknown with all 5 of ours. Recently I was a bit crushed by a family member & her viewing of our Abe. She is behind & not at the maturity level you'd except for a 8 year. But she is ours & we love her through it all. Anyways your not alone. But we will certainly keep E in our prayers & C is looking so great after her surgery. ((HUGS))

Tamara's Mommy said...


Thank You for sharing your story. No one can understand what parents of special needs children go through until they have one. And even then there are so many variables. I commend you on your openness regarding your children's situation. It is through situations like yours that we all learn and understand just a little bit more each day.

Stay strong Mommy. You can and are doing the right thing.

We will keep your family in our thoughts and prayers. ;o)

Hilary Marquis said...

I can honestly say, "I get it". You are doing an amazing job as a mother to all of your kids, near and far! They don't come with instruction manuals, they are all unique. This is the most difficult job in the world. I want people to "get" my son, to not have to explain that he has Asperger's for them to not give him the odd stares...he's bright, he's loving, he's funny and he's MINE! Hang in there, you will all be in my prayers. You know where to find me if you need to talk :)

janiece said...

We're still on the waiting list for neuropsych. Its so frustrating. I hear so much "advice"--but unless someone has been there, done that--they just don't get it.
I seriously think we need to get out soon--we'll form our own support group.

Only the Sheppards said...

Hugs, Shannon. I hope everything turns back towards the better soon.