Disclaimer: My son, Griffin, very much dislikes the label “special needs”. We respect it. We honor it. For other severe disabilities. For other kiddos/adults. You see, in our house, we all have special needs and we think other people do too.
He was not my first pregnancy, but was my first child carried to term. I’d gone through four other miscarriages/ectopic pregnancies so when we got past the first trimester, I thought it was a home run. Labor was induced and my body didn’t like it AT ALL. Griffin was born via emergency c-section weighing in at 9 lbs 8 oz and measured 21.5″. It was one of the best days of my life.
Our first year and a half was great. I didn’t notice anything odd. Griffin spoke in simple phrases on schedule, was walking pretty much on time. Doctor visits were predictable and uneventful. He was a happy, sweet kid. I didn’t notice any of the signs.
My twins (yes, you read that correctly) were born one month before Griffin turned two. In the fall of that year, he started a mother’s day out program at a local church twice a week and his disposition changed pretty quickly.
He started having more meltdowns than usual and got irritated with any change. He bounced between things to play with but could focus on things he loved like Disney movies, trucks and playing outside. But I KNEW something wasn’t right.
I had worked my way through a severe speech dysfluency as a young child and knew that he wasn’t speaking appropriately. I had him tested through the public school system after first fighting my way through it, and he was enrolled in an early childhood classroom with speech services by the time he was four. He was in a regular education classroom in kindergarten, as well as first grade, but had been diagnosed or labeled with a “handicapping condition of Speech Impaired.” He had a severe stuttering disability but proved to still be really frustrated and overwhelmed. Then things went from difficult to worse. My husband died suddenly from a genetic heart disease.
By the end of first grade, we were dealing with academic and behavioral difficulties. Anxiety, low frustration tolerance, not reading, not speaking and it was suggested that he might have ADHD. I didn’t even know what it was, much less what to do about it. I really had no clue. I didn’t know what to do for him or how to do it. But that soon changed.
If I am anything in this world, I am first, a daughter of the King; and second, a fierce advocate for my children. My job is to equip them with the resources they need to be able to accomplish all that God has set before them. No joke. I don’t mean enable them, but help them find the resources and discover the gifts that are freely theirs. I should have been a lawyer or a detective or a researcher for a news organization because I sure did become adept at researching and educating myself on what it meant to advocate for my children.
It is not for the faint of heart. And it shouldn’t be this hard.
I took Griffin to UT/Houston for testing. When I say testing, I mean a huge battery of tests from nonverbal intelligence testing to Woodcock-Johnson – Revised, to visual, gross and fine motor, hearing, memory, behavioral, and on and on. Finally, he was diagnosed with ADHD Combined Type, Anxiety Disorder-NOS, and found to be sad or angry – all at just seven years old.
I was so incredibly devastated. The doctor qualified him as being “other healthy impaired.” What exactly does that mean? Thus began my experience into ARD (Admission, Review and Dismissal) meetings with school systems and then on to IEPs (Individualized Education Plan) for special needs kiddos. It became a second career.
We let him repeat first grade, allowing him the opportunity to rest and learn with modifications to his environment. We moved school districts because we got remarried, and we were blessed with one of the best educators I have ever met: Holly Hoynes. She worked with Griffin and by the end of that year, he was a different kiddo. I’ve saved almost every document having to do with his education and medical history and his first report card from Mrs. Hoynes is no exception. By January of the following year, she had this to say, “Griffin has oral fluency in reading at an end of first grade level. We will be working on comprehension as more inferencing is expected. Griffin is doing well in all academic areas.” I cry just thinking about the answer to prayer she was for our family. She ignited in him a passion to read and he has not stopped.
Then we moved out of state and completely away from everything familiar. I know. Mike and I truly felt like God was leading us to north Alabama for many reasons, so we prepared Griffin and the girls and started out on an adventure! Then things started popping up again.
Griffin was doing really well academically, but socially, things became a bigger challenge. Change was not good. If things were too loud or we were in a crowd, he would become overwhelmed. He didn’t seem to ever really be calm unless he was curled up with a book. Grocery shopping was a nightmare. I ventured to Atlanta to have all three of the kids tested again. The girls were showing signs of slight fine motor delays. We left Atlanta with the girls being diagnosed with dyslexia. One daughter had dyslexia more severely than the other, lots of physical therapy to work on and an inkling of what might be going on with Griffin. It’s in that doctor’s office in Atlanta in the summer of 2000 that I first heard the word Asperger’s.
There is not enough space on Mary’s blog to tell you the obstacles this child has overcome. We’ve had a village around us. We’ve had a mighty God protecting and providing for us. What I can give you is hope.
Griffin was diagnosed with an autistic disorder. He is very high functioning and not your stereotypical Asperger’s kiddo. He still has a speech impediment but in the fall of 2009, he graduated out of his IEP. I’ll never forget the words the administrators and educators heaped on him that day. Never.
He’s a freshman at Auburn this year, learning how to live on his own and working toward making his dreams come true. And he wants you to know above everything else, that he is happy and loved.
Dedra says that she’s “just a chick,” but I think she’s much more than that. In her own words: “I’m a chick in love with Jesus, her man, her kiddos (there are two of the three up there), her family, running like a mother and COFFEE. I’m learning to push back from the table, never, ever ask for seconds and cut out junk that isn’t good for me. I decided that I love running so much that I am training for a half marathon and seeking to be a temple that He uses greatly! There is nothing better than time with my family but I cherish time with my sister and her family almost to insane levels. I love, love, love my girlfriends. IRL and online. Any excuse to chat, giggle, have a cup of coffee or better yet, DIG in the WORD. I am all over it.” Dedra says she’s never met a stranger, and I can back her up on that, because I met her at Blissdom several months ago and we’ve been friends ever since. You can read more from my sweet friend at her blog, Just a Chick, or on Twitter @dedraherod.
Wow. That is truly an amazing story. You really donhave to be your childrens advocate.
Isn’t that the truth?! No matter what their needs are, our kids need us to stick up for them and push forward for them!!
Thank you for sharing your story, Dedra! I’m in awe of all you’ve had to overcome and teary to think of who your son is now becoming as a result of your efforts. Go Griffin!
Thank you for your comment, Leigh. I’m in awe of these amazing women who’ve shared their stories, too!