To the ordinary day BEFORE there was no heartbeat on the ultrasound and my daughter died. Before I miscarried another child. Before there was abuse or heartache. Before I lost my home (okay, that turned out for the better, but it was still hard). Before my daughter was diagnosed with autism. And then my other daughter. And then my son. To before I found my son was deaf in one ear. Before that first period that lead to years of endometriosis pain. Before Dean had his first seizure. Before my first binge-purge session due to body-loathing. Before the first time I found myself in such despair I began self harm (of which I am in remission).
It's been a long road but where we are now is where I am so blessed to be. I find myself in a time of beautiful Derbe Rest (read Acts chapter 16). In each those times of brokenness was an opportunity for God to be glorified, for His light to shine through the jars of clay, for my faith to be tested and strengthened. And while God can be glorified in all things I'm so grateful to be experiencing His undeserved blessings in my extraordinary ordinary life.
Thank you for being on this journey with me and allowing me to share this life with you.
(Of course Dean was all about the rainbows)
So we're studying geology in school this semester and I thought these chocolate rocks would be a hit. I was right.
I added some colored paper to an old cardboard scrapbooking-supply-bin and gave Bruce his bin of vehicle manipulatives and he went right to work sorting them into the colored bins. It was fun to dump them into the wrong color and have him calmly "fix" it.
It wouldn't be a complete blog post without overwhelming you with photos of some of the sensory bins we had this month -- since our "theme" is Spring and Colors they involved a lot of colored items:
Water beads are messy. But they are so fun. So I tried again (I swore I'd never buy them again a year ago). Yeah, it happened again. Dean chopped them up with spoons and they got stuck in the grooves of the wood floor. There won't be a next time, but if there is, I'll lay down a sheet first. :)
Here's Brucie in the waiting room for his OT eval. At his 2 year checkup the Doctor referred him for those long overdue Occupational and Speech evals I never got around to having done. He also had some testing done with his special ed teacher to update his IFSP.
This kid is quite the problem solver! His teacher taped a paper up high and gave him a crayon. When he could not reach, first he climbed on his teacher's back. Later he ran off and returned with a stool.
While meeting with the Occupational Therapist we tried to redirect him to a new task, but he really wanted another wet paper towel. So he pulled up a chair. I took it away. He got a new one. This eventually led to one of his epic tantrums. The kid can really throw a fit!
For both speech and OT he qualified for services. I knew these therapists well, as all my other kiddos have seen them for a long time. They said I was already doing everything at home that they would do - like sensory bins and an OT room. We elected to opt out of extra therapies for now.
See what I mean by the joy in the ordinary? My son is, to me, EXTRAordinary of course, but there is something so enjoyable about the every day, uneventful moments that brings such satisfaction and joy.
Dean has been uncooperative with his hearing tests in the past. At his 6 year (YES - MY SON IS SIX NOW!!) check up he failed the hearing screening. I wasn't at all concerned but we did have to follow up with an audiologist. Thanks to Bruce, I was familiar with this process. We left with a stamp of approval - he has normal hearing. Typically I'm not a fan of the word "normal" but at times it's nice to hear!
Weight is still a concern, however. It has become a greater concern as of late -- he has dropped off the charts (the highest he has ever achieved is 6th percentile). Just like with Julia he was not following his own curve, but plateauing. Worse even, he is LOSING weight. Since he has dropped below 40 pounds he has to go back to his old car seat even.
We had a visit with a nutritionist but we're already doing all the things they suggest - I feel like a pro after all of the work we've done with Julia. His food allergies make things more challenging too. I'm not sure what comes next...
Toddler Tuesday at Mall of America has an event and a free movie each week. We have therapy from 930 am to 530 pm on Tuesdays but I rescheduled the morning appointments in favor of seeing Curious George!! The boys both have birthdays in February and have a mutual fondness for that curious critter! Afterward we caught the free showing of Kung Fu Panda 2. Look how adorbs my little guys are!
We've been meeting with her entire team at Melrose, the eating disorder clinic, weekly. It's tough to say if it helps at all. I'm still not convinced there is a mental component to it, since we know she has gastroparesis which is a stomach emptying disorder. However, even on the meds she is stagnant in her weight gain has stalled 14 pounds from her current goal weight.
The last thing I want to share about my ordinary life is about this conference I attended at the Pacer Center (a special needs advocacy group). It was a 3 day Parent Leader Training for parents of special needs children. A very in-depth look at the IEP (individualized education plan) and evaluating areas of need with services provided that are targeting that area.
This is helpful in the services we receive in our private therapies - OT, ST, PT, social skills, etc. Because I homeschool, the kids do not have active IEPs at this point. Dean had one that followed him from 20 months through the end of Preschool. Bruce currently has an IFSP (Indv. Family Service Plan) for under 3 years old. Dean had transitioned from this to an IEP. The girls had ones in place in elementary school.
The instructor was assisting me in this Parent Homework Sheet activity and noticed a part about Bruce's progress updates with his expressive language. "17 years and I've never seen an IEP that included the word 'boob.'" Glad I could be the first? (The statement was that Bruce had been using signs and words for several things, such as 'boob' for nursing.)
On the 3rd day Pacer held a training for the public on the ABCs of IEPs and the Parent Leaders were to assist those attending. I was the only one who had experience with an IFSP in early childhood and connected with this family whose children were - get this coincidence - deaf (her husband and father in law are deaf as well). Much more than Bruce, but I still felt so bonded to this mom.
It was exceptionally rewarding to speak with a parent on the front end of her special needs journey. I didn't realize how far we had come until reflecting with her what it is like to be just beginning. I told her about TEFRA MA and the exact process I went through to get approval. It was life changing for us and she lit up like a streetlight upon hearing about it.
And although the group of moms attending this workshop with me were, most of them, far more liberal than I, it was a comforting crowd. There is an instant and unspoken bond when in a room full of others parenting special needs children. What a comfort to be surrounded by others who just "get it."
To know that there are not any other options: you be the best parent for that child that you can be. More than that. The parent they deserve. It's not a choice, it's a given. I am NOT always successful but that is where that whole "God's light shining through the cracks in my clay jar" comes in. He gives me the strength to live my ordinary life.