A 5-Year-Old With NLD Fighting for Special Ed

 
My son Mason has NLD.  He was diagnosed at five years old.  He also has Partial Agenesis of the Corpus Callosum (PACC) which was diagnosed at birth, which is actually what led me to have him given a neuropsychological evaluation when he started having problems behaviorally in kindergarten.  We are now fighting to get him into the special ed program even though his test scores at this age are average to above-average, which contradicts most standards that school officials depend on to qualify kids.
 
I have been blessed to have such an excellent teacher for Mason's kindergarten year.  She has over 20 years of experience teaching kids with special needs.  However, Mason's case stumped her from the beginning.  His behavior with the other children in unstructured settings like recess and at play times in-classroom were completely out of the character that she knew him to have.  He also appeared to have no short-term memory.  She tried many kinds of reward programs.  She asked lots of questions about how he was at home versus how he was at school and tried desperately to find a reason and solutions.  She suggested getting the IEP process started, and told me that wouldn't be done until the spring, so I found a doctor at Milwaukee's Children's Hospital to do a neuropsych evaluation to get us some answers (hopefully) sooner.  Before that I had read a lot about PACC and knew some of these issues of NLD (and other disorders like Asperger's) were similar, so I figured we'd just rule these in or out as well.
 
Mason's doctor at Children's diagnosed NLD.  He said it was very rare for a child so young to be brought in for the testing, let alone fit the NLD characteristics.  He normally does not see NLD patients until the 3rd or 4th grades- when their achievement test scores and grades start to fall.  He applauded my proactiveness and prepared me to expect hesitation from the schools to place him in special ed because right now is the age he seems "normal" or even "gifted" in most areas.  Schools are not set up to acknowledge or even be aware of NLD and are hesitant to change their ways.  At first we were distraught to hear about what effects NLD has on children as they grow up.  It sounded so bleak.  But when Mason came home from school that day, I realized he's the same sweet kid who means well, except that now we have tools to help him even more besides my gut instincts- which is a blessing.
 
When the IEP finally rolled around at school, a school psychologist called to set up a meeting at our home.  She explained to my husband and I that Mason's test scores were very encouraging, and that he didn't qualify for special education under the "learning disability" requirements because of them.  I pointed out that with NLD, of course at this stage they aren't, but she seemed to be pretty set in her determination.  Mason also did not qualify as a "behavior impairment" because his impulse-control issues are not behavioral problems in nature but an effect of his NLD.  At this point it seemed like the NLD was working against him when it suited her and yet she claimed it wasn't an issue when it suited her another way.  We were told there was a possibility that he could qualify under "other health impairment", but she didn't think he would.  She talked up the first grade teacher, and tried to get us to feel confident that Mason would be fine in a regular classroom without special ed services, and when something came up, we could revisit the IEP process next spring.  She left our home thinking we were alright with the school's regular ed for Mason and that we were no longer going to push for special ed.
 
Unfortunately for her, we aren't so easily swept under the rug.
 
We reread our information on NLD, read up on our rights, read up on what would happen if we had to go to court to get him into special ed.  My main concern was wanting to be proactive in getting him support NOW instead of waiting until he slipped behind, and then having to wait until another grade goes by before the IEP process checked him again.  Why wait when we know how NLD works?  He'll be fine for awhile academically, but at some point he IS going to need help.  Besides the fact that he needs so many modifications to keep his classroom functioning and behavior under control.  Why wait?
 
So when we walked into the IEP meeting, we were as prepared as any professional on NLD.  The school psychologist was using her tone that he didn't qualify for special ed, but we blindsided her along with the support we had in Mason's teacher and the special ed teacher- which we didn't know we had but was a nice surprise.  The person we thought would be toughest was the principal since she's the one who approves the allocation of funds.  Everyone in the meeting agreed with us that getting Mason into the special ed program, even if he did not need to be pulled out of the regular classroom for extra help until that showed up even a semester later, was the correct thing to do.  It helped that Mason has PACC so that was a clear way to get him qualified under the "other health impairment" setup, although effects from PACC and NLD are nearly identical, anyways.  The psychologist was too surprised by our turn-around in confidence, along with everyone else agreeing with us, to say much after that.  You could tell she was disappointed/surprised/whatever, but was outnumbered.  We were so giddy when we left the school!  It seemed odd to find it such a success to get our kid labelled a "special ed" kid, but it is such a huge relief that the school has to be so proactive with him.  I have a lot higher hopes for his future success now.  No more waiting around for failure!
 
So I want to get out there that NLD can be diagnosed before a child fails academically, and that you can get help for him/her as well.  There isn't a lot out there for parents of younger kids to read to get support because a) NLD is rare to begin with, and b) it doesn't usually get labelled right until 3rd or 4th grades.  If I have to stick my neck out and say "my son has this, and this is what we did" in order to help other parents of the young who have NLD who come along later, I'm happy to.  You have to start letting it be known sometime so things can change for all of us advocating for our kids.  Then professionals can learn from parents of kids with NLD who didn't get the special ed support this early versus ones who did and can study whether it matters or not to be proactive at this stage.  I think that's extremely important to know.