progress, growth, hope

The following was Diary’s Facebook status on Sunday evening:

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When my girl was five years old, we had a birthday party here in the house. It was, as I described it then, a disaster. She had become overwhelmed. She had begged for escape in the only way that she could. After trying desperately to cajole her to stay, I’d finally taken her away from it all. The party went on without her while she and I hid together from the noise and laughter of her guests. Both of is were in tears.

Today, we celebrated her eleventh birthday. She was having a blast until she became overwhelmed. When she did, she said, “I’m going into the den because there’s too much here.” This time, I fought the instinct to convince her to stay. This was her party. She’d enjoy it in her way.

She left her guests in the kitchen and went into the den to bounce on her peanut. When the next animal came out, I called her. She came to look, was the first one to pet it, then went back to bounce again. When the next animal came out, so did she. It worked for her. She knew what she needed. And I, finally, knew enough to understand that there was nothing sad or “disastrous” about giving it to her.

After she blew out her candles, she said to no one and everyone, “This has been my best birthday of ever!”

I dare say we’re all getting the hang of it.

Wishing my sweet girl a very, very happy twelfth year.

#SelfAdvocacyRocks
#BrookeBirthdayPalooza

{Image is of a very happy Brooke holding a blue tongued lizard.}

There’s so much more to say about this.

About the fact that my daughter has grown and progressed and gathered the tools that she needs to grab this life by the balls and truly LIVE IT, but that she has not fundamentally changed. I need you to hear this. I need parents especially to understand that when I say that there’s hope, that life might not always be as hard as it is right now, I don’t mean that there’s hope that your child will be any less autistic than they are today. Because that’s not ever, ever what I mean.

This is …

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As many of you now know, Brooke planned her own surprise party. She had seen one in one of her favorite shows and decided that she had to have one. But she knows herself. (GROWTH)

She knows, at least to some degree (and I dare say probably far better than most adults) what she can handle and what she can’t. (PROGRESS)

So she asked for and planned her own surprise. (SELF-ADVOCACY)

And it was, in a word, awesome.

She invited far more girls than I thought she could handle. (See “she knows what she can handle and what she can’t.” I trusted her gut over mine.)

She chose the palate. Pink, pink and pink. Duh.

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She planned to hide in her room until all the guests had arrived. Her original idea was that they would all wait outside the house until everyone was there. Mama tweaked that one a little. Instead, we had them gather in the den and make SURPRISE signs.

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I realize that the hearts are a little distracting and a lot odd, but I didn’t get permission from the kids and their parents to post their faces, so that’s what you get. It’s also extremely time-consuming, so you’re just going to have to imagine the rest of the crowd scenes, including what came next, which was SURPRISE PRACTICE.

Brooke had made it very clear that while she was hiding, I was to teach the crowd how to surprise her. It involved a deep crouch and a frog like jump and a big, hearty shout. So yeah, we worked on it while they made their signs.

Finally, I was able to summon Little Miss from her room. While everyone “hid” (in plain sight) in the kitchen, she made her way down the stairs and around the corner …

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And .. SURPRISE!!

Yeah, it was that awesome.

A couple of months ago, Brooke had attended a friend’s party. There she met Rick, the Creature Teacher and his menagerie. She had declared on the spot that he and his animal friends would come to her party too. Thanks to Papa and Grandma Noe, who decided that sponsoring Mr Rick would be an awesome birthday gift, he was booked.

Of course Brooke had some special requests, like Zima the bird.

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And a pig. There had to be a pig.

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And a corn snake. Ew.

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And a flying squirrel. Which turned out to be way cuter than I thought a flying squirrel would be. Who knew?

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This next one is my absolute favorite picture. Maybe ever. Brooke and a blue tongued lizard, also apparently known as a skink. Can you see her face?

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How about now?

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I know, right?

Now, what you need to know is that by this point, she’d already started running off to the den in between animals. She’d left her own party, abandoned her guests, or, to put it another way, done what she needed to do to enjoy a party thrown for HER in HER own way because she knew what she needed in order to do that. As for the guests? No one, not a single one of them, batted an eye when she left nor when she came back. They know her. They get it. And they came to the party for HER.

But heaven knows she wasn’t going to miss the alligator.

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I am SO out of time, so we’re going to skip the skunk and the chinchilla and the cake and the pizza and the freeze dance portions of the birthday extravaganza. However, I can’t skip over the pinata. You see, I had a plan for the pinata. There were seventeen girls at the party, including Brooke and Katie. Five of them are on the autism spectrum. A pinata, and all that goes with it, is essentially a recipe for disaster. So I had a plan. I would stand in the middle of the scrum, directly under the pintata. That way I could maintain some semblance of space between the girls, slow down the pace if needed and hand out extra toys to those who might not be getting their share. (I had a bucket of extras set aside for that purpose.) It seems, however, that I didn’t tell any of this to Luau, because, well, yeah, he’s supposed to read my mind. (sarcasm) So this is what it looked like when I arrived.

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Yes, that’s my kid, in the MIDDLE of that mush of people, arms up, waiting. GROWTH, PROGRESS, TOOLS, SELF-ADVOCACY.

And this is Luau’s face when I said, “Oh my God, what are you doing?”

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Can you see it now?

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Love you, babe.

But at the party, there was one face that mattered. This one …

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The face of a beautiful, happy kid who is learning to LIVE this life in her own way.

And isn’t that, my friends, all that any of us can HOPE for?

My daughter has progressed. She has grown and she has gathered tools and she has become one heck of an incredible human being. And at her core, she has not changed. Thank God.

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17 thoughts on “progress, growth, hope

  1. LOVE
    It has taken me years to figure out that Isaiah wondering off down the street talking to himself while all his friends play in our driveway is ok. I get it.

  2. What a party, love your beautiful girls and Brooke’s smiles. I got hit over the head with the knowledge that she (and my Matt) are no less autistic…but have progressed, have learned coping skills. I used to want to heal my baby. You are helping me drop the desire to fix what is unique, and reminding me to walk away from that idea every time I pick it back up. I doubt I said that clearly. I am so thankful to you and other honest moms who share their journeys with those of us who want to do the best we can.

  3. You’re amazing as are your girls and hubby. You inspire me. My daughter and I love following you and Brooke’s adventures. She is now planning her own animal surprise party for her birthday in August. I just wish we had at least one friend to invite for her.

    • Oh, that breaks my heart. Are there any opportunities for her to meet other autistic girls? Brooke really seems to find connections with them.

    • As a child, my perfect birthday parties were those that involved only my closest family members (my parents, grandparents, and brothers). It was more quiet and predictable that way. I did have some friends in school, but not people I was entirely comfortable with. So please don’t think that you need to have friends to have a birthday party. Sometimes, just being with your loved ones is all that’s needed to create wonderful memories.

  4. Thank you for this. My 16 year old, who has not had a birthday party in 3 or 4 years because she just didn’t have any friends to invite (broke my heart every.single.time) and who is just now being diagnosed with Aspergers — or whatever it is that they are now calling the unique way her brain thinks — (oh God, NOW I get what was going on all these many years!), is now planning her own sleepover birthday with a small group of sweet and fabulous girls who truly see my daughter for all the wonderful she is. I am so very grateful for your constant words of encouragement and for allowing me to witness the growth in your sweet Brooke. Happy Birthday Brooke! (Now, the question is . . . did she ask for an alligator as a pet???)

  5. YAY – everyone is so happy :)

    I totally get the pinata thing – and never saw it coming when my son fell apart at a party that had one (he was 6). Poor guy had the “rule” of “you hit it, it breaks” as what he had to do, and when it didn’t happen each time it was his turn, he was crushed and upset because he was “not strong enough” and “doing it wrong”. His brain and thought processes are JUST different enough that I can’t catch this type of thing. Sigh. But once he processed things, he was fine and had a great time- YAY!

    We have a birthday soon. He’ll be 7, and I think this year is the year where more kids will come (I hope). He has friendly relationships with kids at school, and people he wants to invite. He’s been invited (group/class invites) to several parties this year – and they went pretty well. Fingers are crossed!

  6. So happy to be on this journey with you, Jess. I hear your voice as I open the box with the Baby Einstein toy my eight year ol Isabella has been wanting desperately. Age appropriate my……

  7. As always a most beautiful and wonderful post…..and as a parent on this journey I know I have have “gathered tools”….I have cried….I have celebrated…..I have grieved…..and I have jumped for joy….because from the tears have come light…. to see my child…..his spirit….and his gifts….and I am the one who is forever changed…and I thank my sweet child for this.
    I thank you again for sharing so openly and honestly.

  8. I enjoyed this! We recognize that because we have an Autistic son, our life looks very different. I loved this story because I’ve wondered what a birthday party would look like for him, an frankly thought he’d never have one with kids at the house – maybe we could have a party at another location where he could focus on an activity. But this gave me hope, just another perspective of how our life looks different, but can be so GOOD.

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