My Family

My Family

Friday, September 5, 2014

Uniquely Marvin

Now that our AC has been restored and normalcy has returned to the land I've turned my attention to reading.  And more reading.  A 14 page report has come home and once again tipped my world in a new direction.

A few posts back I talked about how hard it was to not have any sort of diagnosis for my son.  How I felt like I walked in the dark.  14 pages changed all that.  A switch has been flipped on and there's no going back.  We received our neuropsych report and educational testing.  We learned so much from it.
The first thing we learned is sort of what I refer to as the "duh" diagnosis.  You know the one you know your kid has and it's so painfully obvious that even the most dense person sees it.  I'm talking about ADHD.

If you know my son you know that he has the attention span of a fruit fly at school and in many other diverse situations (my apologies if I offended fruit fly fans).  I first worried about it in preschool.  It was so obvious to me.  His inability to focus on group time, busy areas, etc.  When I brought it up time and time again the concern was brushed aside by teachers.  I was told "he doesn't have it, see look at that kid, they obviously have it Marvin is fine.".  I hate being told my son was fine when he obviously wasn't.  In fact I have come to hate the words fine and Marvin in the same sentence.  When I talked with the Drs and told them that he was "fine" and his teachers didn't think he had it they were a little burned about it.  While I agree that ADHD is way over diagnosed I also know that Marvin's brain suffered from drugs in utero and severe trauma.  He DOES HAVE ADHD.  In fact it is a significant amount of it.  Significant enough that he will require medication.

Marvin has also been diagnosed with dysgraphia.  Dysgraphia is a specific learning disability that affects how easily children acquire written language and how well they use written language to express their thoughts. Dysgraphia is a Greek word. The base word graph refers both to the hand’s function in writing and to the letters formed by the hand. The prefix dys indicates that there is impairment. Graph refers to producing letter forms by hand. The suffix ia refers to having a condition. Thus, dysgraphia is the condition of impaired letter writing by hand, that is, disabled handwriting and sometimes spelling. Impaired handwriting can interfere with learning to spell words in writing. 

This gets more fun now.  Due to Shaken Baby Syndrome and abuses committed by bio mom he has right brain hemisphere dysfunction.  Can you say that five times fast?  This has given my son problems with visual spatial processing which may cause future math issues.  He also has significant difficulty with visual learning skills.  The impact of his abuse lives on and on.  Sigh.  

Plus we still have PTSD and attachment issues.  Can't forget to bring those to the party.  

But in all new and a little scary stuff we had other news on his educational testing.  Marvin has a really high IQ, cognitive flexibility, and his executive functioning was very high as well.  It seems that he was very high in most of the testings. So he is a smart little cookie.  

Children like Marvin are sometimes referred to as twice exceptional children.  Children who are off the charts in both directions.  But to me he is uniquely Marvin. 
Goofy, fun loving, and caring.  A child who one day runs around with shorts on his head proclaiming he is invisible and the next day comes to me and says, "Mama it doesn't make sense.  Pouring water on your head and posting it doesn't cure anything.  It just makes you look dumb.  Mamas and Dadas should tell their kids to study hard, go to school and be good doctors and scientists so they can help cure people who are sick."  He is one of a kind.  And we are blessed to have him in our lives.  

Monday, September 1, 2014

Bumpy Ride

It's been a rough few weeks.

It started out with my Dr. visit.  The good news is I don't have parasites.  The office was very excited about this. The bad news is that I have IBS.  I told the Dr. I would rather have parasites.  They were rather disappointed in my response.  I know there will be some changes in my diet and lifestyle.  I'm not looking forward to giving up some of the foods I love and eating tree bark (O.K. I'm pretty sure I won't have to eat tree bark but you never know).

Then there is the house.  We had to replace our 14 year old carpets.  We got laminate flooring.  By now we are pretty sure that Cary Lynn will be wheelchair bound most of the time.  And her equipment has wheels. The person who installed our flooring was clueless and thanks to him we have big gapes in the laminate in places.  They refused to return our calls and the person harassed me on the phone for money.  We got a second person in to fix what he could but the gaps are still there.  Gaps wheels could get caught in.

Then our heat pump died.  When you live in VA it is hot in the summer.  You sort of require AC in the summer and heat in the winter.  When you have a child with special needs who can't regulate her core temp without lots of environmental modifications and has DI you have for some real good times.  Plus I have been rather unsuccessful at my attempts to grow money trees.

Don't get me wrong.  I'm not out on the front lawn crying over Tara burning down and swearing that we will never go hungry again.  But I do worry.  A lot.  That's a parents job.  Things may just be a little tighter and we may be eating a lot of boxed mac and cheese (I hope it tastes good with tree bark).

Even in this mess things that I'm thankful for.  Thanks to my awesome hubby and Rent a Center we have a portable AC unit.  We named him Edward.  Edward has helped keep my child's temp regulated and her DI in check.  Edward has helped keep my child out of the hospital.  I could kiss him.  Well, maybe that's taking it a bit far.

I also got my son's neuro psyc testing results back.  Although we have a lot to work on (and that's a whole other post) the tests show that my kid, despite everything, is a pretty smart little guy.  But hey, I always knew that. (Also a parent's job.)

So for now I'm going to keep trying to grow a money tree, learn to embrace tree bark, and buckle up because you never really know what life is going to throw our way, but I'm going to give it my all!