Yesterday was Henry’s first official day of Summer.
Today is Jill’s.
Summer is here in all it’s crazy, non stop, impossibly busy glory.
Late spring and summer are always insanely busy for us. Between birthdays (all FOUR kids have back to back birthdays!), anniversaries, college graduations, and lake vacations, every weekend is booked solid between mid June and end of August. Plus, stuff mid week.
Most of it is fun stuff. But still STUFF.
To counter balance the whirlwind of STUFF, I go out of my way to purposely keep the times we aren’t running around super duper simple.
When we aren’t heading out somewhere, you’ll find us on a quilt in the backyard. Sprinklers. Trampolines. Slip n Slides. Art projects.
Simple. Simple. Simple.
We won’t leave the house. We won’t put on shoes.
And you know what happens when you force yourself to slow down and go simple?
You capture sweet moments.
And your mama heart threatens to explode into a million bitty pieces.
Case in point:
These three.
They bicker. All. day. long. If ever I lose my mind, it is because of this.
Lu and Hen the most…and while Jill isn’t ignored by her siblings, she’s often just kinda there. In the periphery. Not shunned, but not necessarily included either, if that makes sense.
But not this day.
This day they played a silly game.
All three.
Together.
This does not happen often. Jill’s special needs often preclude her from the crazy running around insanity that the other two like best.
But today, they snacked on MTL, and I watched this scene in which Jill was not only a participant, but the ring leader.
She would stuff her mouth…with blueberries, I think.
And then…that bitty little blonde…such a sweet delicate flower…would pretend to burp.
Mouth wide open.
Loud.
The Bigs would yell and fall backwards from the sheer force of such intense gastrointestinal nasty.
And she…she would laugh hysterically.
Because she had a talent.
So proud of herself.
Cognitively delayed? Sure. A little. But lately, I’m finding more and more that her delays aren’t so much cognitive as they are that she cannot communicate effectively. Plus, she can’t move her body as she would like.
When you can’t walk or talk, you’re left with a body that won’t cooperate with you.
And that is frustrating. For her. For me. For all of us somedays.
And so today, at our IEP this morning, I will be pushing for more speech therapy. I’ve heard murmurings that it will be denied for budgetary reasons. I don’t know.
What I do know is that she Gets It. So so so much. You just don’t realize it because she can’t tell you.
But I can.
And as her mama, I will tell her story for her.
Because everything hinges on my girl being able to tell her own story. May it be with words, pictures, pointing, or signs…she has a story to tell inside of her.
I see it every day.
But I want to hear her story too.
I will.
And that day will be glorious.
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Oh Jeannett. My heart breaks that you have to fight so. freaking. hard for more speech + language therapy. It almost makes me feel guilty that its so easy for me to get services for my kids who need it, but let’s face it, not as much as your precious Jilly. And when I went into my Norah’s last IEP 2 weeks ago, I said I didn’t think she was where she should be for a child going into 4th grade. And I was prepared to lay it all out and they just looked at me and offered up an extra 30 minutes a week.
Jilly has an amazing advocate in you. Someday, that girl will move mountains.
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I love this post. You’re a good momma to understand that she gets so much more than she can tell you…and to fight for her! You are her best advocate. Budget shmudget…a little extra therapy can go a long way! I’ll be saying a prayer for you today!
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I will be praying all day for you and Andy in this IEP. I KNOW how hard it is to have your voice heard in these meetings, but I also know YOU can do it. They have no idea who they are up against…and HE who is behind you. Praying…praying…praying…love you all so much.
I have a thought about the constant bickering between siblings. This worked for my family when we went on road trips, but it just might work for the summer too — if you think they understand the value of money. Give each child a roll of quarters, dimes, whatever and play up big what they can do with ALL that money. It’s theirs to spend at the end of summer or maybe the end of each month. Every time they fuss, talk back or fight, they each lose a quarter. They may lose all the money, but they’ll soon realize how much they fight and it won’t be worth it.
Praying for mama strength and the Lord’s intervention in your meeting today! May budgets be rearranged so your sweet one can have the chance she deserves. You are one amazing, awe-inspiring mama! Go get ’em!!
I will be praying that they hear YOU, as her mom and advocate.
Keep pushing Momma, you’ll get there. Be known as that momma who asks for a lot, Jilly deserves it.
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Here’s hoping for approval for Speech! :) If not, be sure to look around, my daughter was born with hearing loss and hears using hearing aids, when she was a baby (and doing early intervention and speech etc) we joined up with the distance learning program at John Tracy Clinic – you might check out their website — they’re specific to teaching aural language to kids with hearing loss, but they gave us great, usable information. “lessons” each month that include games and such. It’s more parent training than anything, but it helped a lot. :) Try them, they’re great! Good luck! :)
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You are a great advocate for Jilly! I hope your meeting went well and you didn’t have to fight too hard…
Your posts are so inspiring. My daughter is 13 months. Not yet crawling, hardly any sounds, significant delays, etc. She probably is more on par with a 6 mo old. Anyways, we start speech next week. Praying for some miracles!
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You are one tough momma. This will help other mom who’s going through same situation and definitely you’ll be an inspiration to them. How do you spend time with your kids especially in times like this?