Friday, November 20, 2015

Mama's Heart Breaks Just a Little

My sweet and goofy Boogie
We've been through some big transitions in the last year.  Bean was born just a little over a year ago and while I was learning to navigate post-partum and mothering 4 children I had to learn to navigate the IEP (Individualized Educational Plan) process from the other side of the table. Being an educator, I knew the process, being a mother who has a child who may need an IEP is a whole different story.  Since preschool I had had some concerns over my son's development.  Things weren't clicking for him as I thought they should. More than once I was told that he's doing "just fine." But that didn't work for  me. You see, I could tell that he was bright, but there was a disconnect. Even though he was reading and processing and comprehending above grade level texts, he was still doing letter reversals in his writing. His handwriting was horrible and he had a hell of a time with executive functioning and following multi-step directions.  So in my 2nd month of pregnancy we started down the road of having him tested.  More than once I was told that he could be on the spectrum.  What spectrum you ask? The autism spectrum.  And quite frankly the developmental pediatrician said that my sweet Boogie walks a fine line.  He said if Aspberger's was still an independent diagnosis and not lumped under the very wide umbrella of autism, there would have been a chance he would have diagnosed Boogs as having Aspberger's. But now the diagnosis would be high functioning autism because of the way it's defined in the DSM.  But at the time, the pediatrician didn't have enough data to make that diagnosis.  He said that Boogie definitely has dysgraphia (difficulty with writing) and he is diagnosed with that.  We will have to do further testing and evaluation if we want to determine definitely if Boogs is on the spectrum.  Right now, we decided to wait.

I bring this up because this has been a tough year trying to understand my son a little more and trying to support and guide him a little more. Meeting his needs and giving him the tools and skills he needs to navigate life.  Academically he's aces.  Socially and emotionally he needs a lot more help.  So we did the IEP process. We had him assessed through the school and from their point of view he came up with NOT being on the spectrum, but having a lot of difficulty with executive functioning.  His writing disability came up. We also found out he's effing brilliant. I don't say that easily. I knew he was bright, but it came up over and over again, "Do you have any idea how intelligent your son is?" I nodded and said, "Well, I know he's bright." It wasn't until I had in my hand his results that I realized that my son is not typical. Not in any way.  And as my husband says, "Why be normal?"  He can't tie his shoes, but he can give you every single detail from every single book he has ever read. He can give you specific stats on just about every animal.  His background knowledge blows me away and often I have to say, "I don't know the answer to that, let me look it up." But he can't follow more than one direction at a time. He can't put together legos. He can't see the forest for the trees. As a result of the testing and giant discrepancy between his cognitive abilities and his writing abilities Boogie was given an IEP. So that we're clear, they (being the school system) don't hand out IEP's like they're candy. They are actually hard to come by and the school systems have a lot of keeper of the keys and they are kind of stingy about handing those out. So imagine my shock when we didn't get a 504 plan, which is lot easier to receive, but an actual IEP. My son has goals, a case manager, accommodation, and support where he needs it most.  Not only that, he was also tested as part of his application to attend a program for the highly gifted students.  So Boogs is academically in the top 3% of 4th graders in the county. (I had no idea until someone else told me the stats). So now we have an IEP and now we are switching schools to meet my son's academic needs because as it was gently put to us, they can't meet his needs at his home school because his academic needs are above his peers.  So we accepted his acceptance and now Boogs attends a school that is a 20 minute bus ride away.

I thought it would be easier. I thought that since he had an IEP he would get the support he needed while his learning was enriched. I LOVED his old school. I loved the teachers and the administration.  I felt supported, I felt like they KNEW and UNDERSTOOD my child. And they did.  They still ask about him when I go to pick up my daughter.  But every school is different. My husband will tell you our home school is like a warm hug. It is welcoming. The new school is all business. No warm hug there.  It's just very different.  We struggled this first quarter to get this case manager to follow Boog's IEP. I was told over and over again, he doesn't need the support as outlined. Nonetheless, they need to follow the IEP until we review and deem it unnecessary. After a meeting and some strongly worded emails, we are getting a little more support. Not a lot, but more.

And then, my son missed his bus this week. Not once, but twice. He missed the bus coming home.  Because of Boog's difficulty with executive functioning he has come to rely heavily on his peers. He observes routines and situations and sets into place things that will help him. When those variables change, he has difficulty going with the flow and putting in new support systems. So this week the teacher changed the seating in the classroom. End of the 1st quarter so everyone got new seats. No big deal, right? Well unbeknownst to her and to us Boogie has been relying on the two girls at his table to know when to leave for the bus. They never told him to get up, but he noticed when they left the table and he would just follow them to make it to his bus. Well now no one at his current table takes his bus. His cues are no longer there and as a result he missed it when his bus was called. TWICE this week. The second time he was just beside himself sobbing on the phone.  I calmed him down and drove the 20 minutes to go pick him up.  And here, this where my heart breaks just a little. So Boogie needs help. When Hubby and I asked him what he could do to ensure that he could make it on the bus he said he could ask his classmates/bus mates to tap him when they leave to catch their bus. Okay, so it's not taking full responsibility, it's still relying on others to help him. But it was a strategy. I found out last night that he asked a bunch of kids and most of them said, "no." They said "no." That's where my heart broke. They just said, "no."  Some had after school clubs and wouldn't be taking the bus everyday. But others who don't just said, "no." "No, I won't help you." What?  So my heart broke.  And today while relaying the story to a friend I broke. I cried. The tears that had been threatening since last night spilled.

I realize I hate the new school. I hate the lack of support. I miss the warm hug and welcoming smile.  It's so closed off and business like. So my heart breaks and I struggle with how to best help my son and support him.  In my head I go back and forth about whether or not to pull him from school. For now, I won't. He belongs in that program. He needs that enrichment. He needs that higher level of learning.  He needs that push.  But he also needs compassion, support, and guidance. I will strive to give that to him from home.  I will strive to teach him to be that kind of person who says, "Yes, I'll help you" when someone asks for help because, quite frankly, I don't want to raise an asshole. And boy it is hard to raise kids who are kind, caring, and compassionate. To some it comes quite easily, and to others, it's a skill that needs to be taught.  So I pray that I will have the tools and skill to raise my children so that they are not assholes. Don't we all want that? So let's do it.


  1. Oh Heather, the breaks my heart too! He is such a sweet boy and to hear "no" must've been devastating for him! Hugs from afar!!

  2. My heart breaks for you and for Boog. I am so sorry. I know that your family provides compassion, support, and guidance. I see it all of the time. You will get through and do so with grace, even if it doesn't feel like it everyday. Sending my love.