Groundhog Day....again,,,Really?

Just when you think you have it all figured out and it is all moving smoothly...

Once again I am faced with the prospects of what brain damage does. My sweet 9 year old Raury has always struggled in school. He comes by it honestly. For those of you who don't know he was born in August of '01 and within 24 hours or so had a grade II inter ventricular brain hemorrhage. He basically had a bleed in the space between the two hemispheres in his brain. Please keep in mind that we were NEVER given a definitive reason for his trauma. It could have been a multitude of reasons, his low birth weight, his inter uterine growth restriction, my high blood pressure and gestational diabetes...the list can go on and on. We had plenty of intervention prior to his birth. He hardly moved in there. He was quiet as a mouse. He still is to this day. He had at least one seizure that we know of, could have been more, and then after much anticipation was treated for it, put on Phenobarbital for 6 months and we were told that he may have delays but no one knows for sure what to expect.
Well, once again we are faced with a challenge that I believe is directly related to that traumatic brain injury. There is no proof of this mind you, and many would argue that his birth injury is not the cause of these issues, but as a mom, I know different. That is what mom's do. We just know. So, needless to say we waited. We had him evaluated, tested and tested again...he went into early intervention/early childhood education. He bypassed preschool, he bypassed a lot of things his peers were doing. Fast forward to 2011...
Raury is in the 4th grade. In my opinion he shouldn't be classified as a 4th grader. He is too young and too far behind his peers to ever be able to catch up. Being born in August sucks for many reasons...it's cool being summer and all, but it sucks too. I should know, I was born in August. He beat the cut off. He is a VERY young 4th grader. In classification only. He does not do 4th grade level work. He has never done grade level work. Keep in mind that he works HARD at what he does, VERY HARD. He expects a lot of himself, but he is always chasing the elusive 4th grade achievement level. He has never had homework...NEVER! He has never had to read a book and write a book report, he has never had to do a spelling test, none of the things that typical class might do in 1-4th grade. He is in our school district special ed program. It is a wonderful program full of all sorts of kids with all sorts of needs, and sweet, shy unassuming Raury is the least of any teachers worries. These special ed teachers have so many different needs and learning styles in their classes I am not surprised that we are simply maintaining from one IEP to the next.
He has been in a self contained Academic learning center type situation within our school district. He had the same teacher from 1st-3rd grade. He loved her, we loved her. She retired this year. Enter new teacher...CRISIS...All of my sweet little man's fears reach the surface and he breaks down. Where he once loved school, now he HATES it. He doesn't like his teacher, she is too different and too loud. Mrs. B was a soft spoken, gentle spirit with the patience of a saint, the new teacher is too different. To shore up his anxiety we trot off to Occupational Therapy, implement Haberman brushing, Listening therapy and most recently the ever important VISION THERAPY with tons of positive reinforcement. It is all necessary...it got him back to school and gave him his smile back, for the most part. We put him on Zoloft for his immense anxiety. That has worked so far. Status quo...or so I thought...Enter Colleen...vision therapist and teacher...sometimes it takes an outsider to notice some things...
Raury doesn't know how to sound out words..."but he reads pretty well for a kid with his delays?" Oh, no I find out, he had excellent recall and a terrific memory. He sees the word and he remembers it. He can sort of sound out a word but not really. He can read, but not to his potential, where he could be reading. He doesn't really KNOW what he is reading because he isn't really reading, he is remembering words that happen to be on a page and he is putting them together to form sentences and paragraphs but he doesn't understand what he is reading. How horrible that must be for him. No context, no framework...it must be like being trapped with people all around you trying to explain the words and stories to you but they are not going into your brain and making sense. It is just a mass of letters, words and ideas but no basic foundation.
We are now going back to the beginning...thus groundhog day...We are starting from the beginning in reading. Phonics 101...soft vowel sounds. Back to the beginning...again...really? Okay, so here we go. He's game to work with me, I am ready to make it work...Oh yeah, I have 2 other boys who need me to help them too..STRESS... I NEED CHOCOLATE...
I need to clone myself, we need a tutor for these boys. We need a therapy gym in our garage...
I never thought in a million years when I was sitting there looking at that positive pregnancy test on December 21, 2000 that I would be here, right now, desperate to find answers, to find help, to find support...to find PEACE for my boys and myself. I struggle every minute with knowing how to deal with each issue, each struggle and each new emergent delay or deficit we find. I worry about where the money will come from when we implement a new therapy or require a new test. Like say...$4000.00 per child for a neuropsychology testing, for which insurance may or may not cover and we need 2 tests. I am faced with the hard decision of staying home for the boys, who need me here for many reasons, all the time, and working to pay for our ever increasing medical and occupational therapies. I need an advanced degree just to be their mom! It would be easy to turn this around on me, make it about me, but it isn't. It is about them, our sweet, loving boys, who deserve every right to meet their potential whatever that may be. The end isn't written yet, I know that, anything could happen, but if I don't expect anything, if I have no expectations of them or myself how can we ever expect to overcome the issues we face. The truth is we have to live with expectations. Now it is just figuring out what the right level of expectation for NOW, not years from now, but immediate, attainable expectations.
Raury isn't the only one of our boys that struggles...Gable has his own set of groundhog day moments. He had developmental struggles and learning issues and I am exausted thinking about those too. It is all too much tonight.
Cat, Rats, dishes in the sink, laundry to fold, shopping lists and schedules to make...it is a daunting task each and every second...the hardest job I have EVER done in my WHOLE LIFE...but at the end of the day, those average jobs never kissed me goodnight, never called me mommy and they never told me their secrets and fears. So yeah, the hard stuff hurts, the repeating themes wear me down and bum me out, but the kisses and hugs make it just a little easier to close my eyes at night so I can get up and do it all again...cuz I will do it all again at the same time every day for the same people and they are going to be there doing it all too. We are all together in this, all 5 of us...we are a family and that is all I ever wanted...Just a happy family! Sometimes I forget that even when it is right in front of me.