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On seeing things clearly.

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Now that it’s almost the end of October, we’re in fall. Well on our way to Christmas and the New Year. And report card time.

Gage is struggling. And it shows in the acting out, the work load, the type of work, the long day and all that is required is hard for him. At then end of Preschool last year I talked about his development with his teacher. And although personally I think she ignored Gage’s special needs, I know she was right about him being delayed. I mean really, since he was 18 months old, he’s been at least 6-12 months behind. I’ve read every word written about him by multiple therapists, neurologists, pediatricians, and evaluators. So this week, when we discussed (in October, mind you) holding Gage back in Kindergarten to repeat it next year, it was no surprise to me. And we know it will be best for Gage to have another year to prepare, and we know that it will be better for him to maybe have a chance to be at the top of the class, but it still pains us to know he has such a struggle in front of him. Bubble_fun_008_1

OMA is not considered a visual impairment by our school system. And last year during his evaluations, I did my best to get some tools the teachers can use listed on the IEP. But it still doesn’t say he is visually impaired. Yet, his vision is the reason he is delayed. After the conference this week, I spoke with a friend who has a child (a boy, age 10) with OMA. I needed encouragement, I needed information, and I needed to know that it’s possible to get his delays addressed from a visual aspect. I spoke to T for well over an hour. I heard what I expected to hear: it’s going to be a long tough road to visual services. It’s going to be hard. People won’t like for me to challenge the visual area of the IEP. And in about three years, when Gage is 9 or 10, it will all be worth it. She has paved a small road for me to follow, and I’m so thankful.

The school is just following the IEP. Although they know about the OMA and there are a few things listed that could help Gage with his disorder, there are no concrete recommendations listed because according to them, he isn’t visually impaired. So all of the things that need to be happening to help him visually just aren’t. Like using a colored paper for his assignments. Like never expecting him to copy/see/trace from a blackboard or a wall filled with hundreds of images 10-20 feet away, and making lessons on paper for him at his desk. Teaching him will require some preplanning and some thought. But this school cares about him. And I know they will do whatever they have to do to accommodate Gage’s special needs.

So our first 5 steps in a multiple step approach include…
1) Obtain a new letter from his eye doctor stating a neurological vision problem,
2) Set a meeting through the appeals process with the County,
3) Get a Visual Impairment assessment,
4) Schedule a PAT (Project for Assistive Technology) test
5) Get new goals and new tools listed on his IEP.

And, while we are making goals…let’s just say we’d like to get this done by Christmas break. I told Julian the other night that the really scary part about this is that I think up until now it’s been easy for us.

So…I’d better get to it.

Side note:
Gage’s body is responding to the EPO injections…and we expect him to be feeling better.
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Quinn started at the special ed school this week and is doing great. There are lots of therapy based activities. Two teachers have said “she is sooo smart”…do you think they say that to everyone? I think not.

Parental treasures.

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Dear Mom & Dad,

Thanks for everything you have done for me.

Thanks for raising me with ethics, compassion, and an open mind. And stamina.

Thank you for moving to Georgia when I was 14. Risking everything for a change of life. I can’t imagine having spent my teenage years anywhere but here, and anywhere but with the friends and life I had.

Thank you for your support of me. And my husband. Thank you for loving him and including him in your lives the way you have. Thank you for embracing him, and our love for each other.

Thank you for holding me when I cried about the kids’ diagnosis’ – both times. Thank you for not saying “God wouldn’t give you more than you could handle” because I couldn’t hear that then. Thank you for being strong for me, even when your hearts were breaking. After all, you were sad too with the news your grandchildren would face life-saving transplants. Thank you for not looking at us with pity, but sadness. Thank you for teaching me the difference. No pity from you - sadness for your grandchildren. Sadness for us.

Thank you for being attentive and interested about every appointment, every evaluation, every medication change, every ultrasound report, every lab result. Thank you for being attentive to my needs as well. For the pain I feel sometimes. Thank you for your worry. Thank you for being strong when I need it, and fragile when I need it.

Thank you for celebrating the kids’ milestones with us and understanding why the milestones are so important to us, for the very real reason their lives are fragile. Futures unknown. Thanks for reminding me that it is okay to only think about next week, instead of three years from now. Thanks for helping me live in the moment.

Thank you for being a wonderful example of a strong marriage. And for helping us understand what marriage vows mean, of what true love means. The true love of family. Thank you for rallying around us. Thank you for being examples to us about faith, hope, love, and support.

Thank you for showing up at a moments notice when my world is hectic, or crashing around me. Thanks for stepping in when I need you, for the kids, or the house, or the store, or a repair. Watch batteries, making soup, hooking up cable, washing my car, going to FedEx, or the post office, or painting a wall, or hanging a picture, or handwriting envelopes, or even watching your daughter give your grandson a shot, for always having a handkerchief and so much more. Thank you for the little gifts of love you leave every time you do something for us. Thanks for putting things you want and need to do on hold for us.

Thank you for understanding that I appreciate you, even when I don’t show it. Thank you for the love you have shown. Your love is like a blanket. It surrounds me. And I feel very warm. Thank you. Thank you. Thank you.

Julia