Tuesday, November 26, 2013

when blessings come

(long and boring, but i have to remember it to remember how far we've come)
reagan's 2nd grade year was a struggle of epic proportions. such a struggle that this year has been deemed 2nd grade 2.0, because he is in the 2nd grade for a 2nd time. while he is a smart boy, his brand of intelligence is hard to capture in action. learning in a regular classroom is simply not enough. part of deciphering what is best for reagan is figuring out what is a real possibility for him and what is just not that important to master. reagan has an absolutely brilliant memory, but he is often unable to explain things that he just learned in a manner that the rest of us understand. someone once explained autism as a Mac living in a PC-dominated world. the processing systems are just not compatible.

last year, i spent nearly every afternoon reteaching reagan what he had already learned at school that day. we would go over class work, we would discuss assignments already completed in his folder, we would read the text books together again, we would do homework, i would make up additional homework for things that were particularly tricky. FOR HOURS. almost EVERY DAY! and everyday there were tears and frustration from both of us. it felt like torture for both of us. but i could not let him slip between the cracks because he is different. the only exception was friday fun, when we would both get a much needed break. often well-meaning people would suggest that i simply homeschool him and that would "solve" the "problem". the problem is that homeschooling was not enough. public school was not enough. i was homeschooling him and i was sending him to public school and it was still a daily struggle. 
the biggest problem was the lack of accommodation from the school district. reagan had an excellent teacher, but she also had 19 other students who needed her and she obviously couldn't completely devote herself to him like he needed. we also didn't have an IEP(indivualized education program) and the school didn't recognize reagan as a student with autism because a district psychologist had not diagnosed him even though we had two previous autism diagnoses from private doctors. since we had no IEP, the only resource reagan received at school was an hour a week of speech therapy. in september, we did all the adequate filing and paperwork for reagan to receive an IEP and we waited. it took a long time. and then it took a longer time. we were used to waiting. every part of the autism process has taken a long time. there are so many children who need services. when january rolled around, reagan's teacher and i were concerned. i called the district psychologist, "mr. k" and left several messages. it took weeks for him to simply return my calls. i finally had a returned phone call assuring me that reagan was definitely "next on the list". i tried to take everything in stride and show good faith. the worst part of this for me was to not know my options and my rights. i knew several other parent's of special needs students who were fighting the same system with similar results. reagan and i continued our afternoon homeschooling and i continued to check in with his teacher, who was also struggling with the district to get an IEP for her own son with autism. by march, i had lost it. reagan was failing test after test after test. i dreaded picking the kids up from school. i just wanted to have the kids come home and be able to enjoy my time with them. poor scarlett was being ignored in the afternoons because i was so preoccupied with reagan. blythe, being a helpless baby, made helping reagan chaotic. i was done. i was done being patient. i was done being understanding. i called mr. k and i wanted answers about why we still had had any testing done. then i called again  and again because i was being ignored. then my darling thomas made the ultimate phone call. he also called, did not have his call answered(of course) so he left a message and threatened to sue the school district if we didn't have a returned phone call soon. his phone call was returned promptly the next day. reagan finally had his school sanctioned autism testing in april. we waited almost the whole school year just for reagan to be tested for something we already knew he had. 
but we still had to wait for the results. school was about to let out for the summer. i called mr.k again. i was informed that he was out of town on vacation. right before school let out? my head nearly exploded. we were trying everything. we emailed the head of the district psychology department. then on june 11, 2013 at 6:47pm(i saved it on my phone as evidence of how long we had to wait), i finally received the phone call i had been waiting all school year for. we had autism results(no duh!) and we could schedule an IEP meeting for reagan's school accommodations. well hurray. only about 9 months too late. 
long story longer, we still had additional scheduling issues to get all the correct representatives present and a week later we finally had our meeting. thomas and i prepared like gangbusters for this. one of thomas's best qualities is absolute legal brilliance and he was ready to make heads roll. he is my hero. he doesn't back down when he knows he is right and there was truly an injustice with reagan's education. the people at the meeting were scared of him. i was a little scared of thomas that day, too. i brought in an entire years worth of tests and schoolwork. my file was easily 4 inches thick, full of failed tests, poor handwriting samples, heavily corrected homework, reading comprehension samples and weak fine motor skill samples. 

it's a rather heart-rending process to put all your child's efforts on display when they look like this. i know he is smart and capable. i have a son with a disability and i want the school to acknowledge and help with that. i know he is able to learn. but i also know that this was necessary to show how he was being ignored. this is not representative of his potential, this is just what he was producing at school without help. he couldn't share what he knew in this format. he would be limited all his life if this is all people could see him do. 

at the meeting, we had our our south carolina autism society parent advocate, reagan's teacher, our school principal, various occupational therapists, special needs service coordinators, and dr. dewitt, the head of the district psychological service department. but no mr. k. all this time, and he doesn't even show up to the IEP meeting. there was about to be some table flipping if the one person who gave us the run around and ignored our needs for a whole school year didn't have to be there. so thomas asked where he was, because he "especially wanted to meet mr. k". dr. dewitt replied, mr. k is no longer with our district. euphoria and anger enveloped me. i was thrilled he no longer worked for the district, furious that this probably only happened because we were the last straw in a long line of other people he ignored. 

after that, our meeting produced an IEP that we would work with. not only would we have plenty of accommodations put in place so that reagan could perform better in the classroom but we were given additional at-home services. some classroom changes include being able to use a computer to complete writing tasks and one on one resource class time with a personal aid to ensure he understands assignment instructions completely and what is the proper way in which to answer questions. the district also agreed to do compensatory services over the summer to help make up all the time we had lost over the past year. reagan had in-home occupational therapy to help with his fine motor skills(writing and organization)in additional to our own private occupational therapy. i can finally read a lot of that boys handwriting! one of the best services we received was 40 hours of in-home tutoring over summer. miss lindsay has been a blessing. she teaches a self-contained autism classroom at a local elementary school and she is the autism whisperer. amazing. we have hired her as our personal tutor after we completed all our compensatory tutoring time. homework time is no longer a trial. reagan goes to miss lindsay twice a week and i can facilitate him completing his work on his own on the other days. reagan actually likes completing his homework on his own and doesn't hate that i check the final results. he asks me for help too. i am no longer the homework witch. the daily struggle is still there, but it's manageable. 

in october we received progress reports and i was over the moon. i just sat in my car and cried as i read the report. we have come so far!

it's not straight A's, but this is better than straight A's. this is progress. reading comprehension is still a monster but reading is not a chore. math is his lowest score but i'm the least worried about it. we're still perfecting the best way for him to take a math test. numbers are tricky and always will be. 

i want to brag about this! he is LEARNING and performing!

i have been able to recognize blessings through this entire process. i hate that we chose to keep reagan in 2nd grade again but it was the right decision. i know that it was hard for reagan to see his classmates more forward and he did not, but he was blessed with another wonderful and empathetic teacher this year. the first thing she said to me when i met her was that she spent the summer reading a book about how to teach a student with autism. i was so touched! i have had to learn to forgive mr. k for making last year a nightmare. i'm still working on that. but there were so many blessings and i got to see my reagan in a special light, the way the Lord sees us. we struggle with things we already know how to do and we continue to mess the same things up but the Lord sticks with us. the blessings come. they come during the struggle. they are the result of the struggle. but they come. i obviously had a lot to learn and still do.

“Some blessings come soon, some come late, and some don't come until heaven; but for those who embrace the gospel of Jesus Christ, they come.”jeffrey r. holland

14 comments:

Jessica said...

what a beautiful post. i have tears in my eyes right now! i'm so glad that this year is going so much better for you. last year sounds like a nightmare. reagan has come so far and you are doing a GREAT job! you and thomas both. :)

Laura said...

Oh Heidi this post made me cry! I understand what you have gone through and are going through. I understand the joy and relief you feel now that things are falling into place for Ragan! :) Logan was luckily able to have his first IEP, and "school improved" diagnoses for autism during kindergarten last year... and now that we are half way through 1st grade he is finally in a good groove. Its has sure been a tough road! I could go on and on. Anyway, thank you for this post.

HJolley said...

What a great post! I am so glad you took the time to explain this long and horrible process, heart-wrenching as I am sure it was. People like me who don't have tons of firsthand experience with autism appreciate your account. Reagan is da bomb. I am so excited to see him (and those other crazies) this week. Love you guys!

Jessica said...

I have chills because I am so inspired by this post. That is INCREDIBLE mothering right there, Heidi. I am in complete awe. And also in love with Thomas. And I think what a good, strong boy that Reagan is to keep trying. That report card is thrilling. What a payoff. And you are so good to recognize the Lord's hand in all of this. Many people wouldn't. Thank you SO MUCH for sharing this. Made my night.

Jeppson Clan said...

I love you Heidi & I love Reagan. Thanks so much for sharing this!

amy said...

first of all...that quote by elder Holland is one of my all-time faves ;) also, you are my hero! we have been through similar (though actually less grueling) experiences with my son spencer...and this is actually one of the big reasons my husband decided to pursue occupational therapy as a career, he wants to work in the schools with kids like ours. I loved loved loved what you said about his grades...progress! that's my favorite thing! you are obviously a fantastic mom, and a perfect match for Reagan...I'm glad to know you ;)

Melissa said...

You and Reagan are so awesome. I'm sorry you had to go through such an ordeal to get an IEP. You probably would easily win a lawsuit if you wanted. There are laws in place for # of days for testing, etc. You are such a great woman to give your son such a great daily life. I am inspired by you.

Julie said...

You are an amazing mom and Reagan is an awesome kid.

Mackenzie said...
This comment has been removed by the author.
Mackenzie said...

Heidi, I am Heather's friend from her mission. I love to read your blog but usually don't comment because I don't want to be creepy. Haha. What a fight! My mother had the same experiences with all three of my brother's and their learning issues. I just wanted to say that you don't have to worry about Scarlett. I was in her same position and I turned out just fine. My mom found ways to make me feel loved and you will find ways to make her feel special too. Keep up the good fight. It is all worth it in the end.

Lindsey said...

Beautiful! Way to go Reagan and fam!!

Emily Curfew said...

I read every single word. my heart stung, then it smiled. heidi, you truly amaze me. and i'm so proud of all of Reagan's hard-earned accomplishments because of a determined and extremely loving mom. love you so much!

Tess said...

I'm glad Mackenzie reads the blog too! I'm not the only Heather's-mission-friend creeper! So, this made me cry. I don't even come close to having firsthand experience, but I am so so so grateful you shared this and am amazed at your sweet son. How empowering for him to have you both as his parents! It does make me sad to think of society or families just giving up on someone. Thank you, thank you, thank you.

Teddy said...

You don't know me, but I came across your blog while blog hopping in the middle of the night... I guess your a friend, of a friend, of a friend of a friend. :) Anyway, we are a Latter-Day Saint family with our oldest son on the spectrum. Your posts about autism and the Gospel inspire, along with your humor inspire me.