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Tuesday, May 15, 2012

Two Hours and Nineteen Minutes, a guest post by Jess.

Today my friend Jess from Them & Us (formerly Dude & Sweets) is here to guest post. Jess is a mom of 4, and today she talks a little bit about her 3rd baby, Livie. 
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Today I spent two hours and nineteen minutes singing "Itsy Bitsy Spider" to my two-year old.


I had to sing it in the same key, using the same pitch, and the same beat, for all two hours and nineteen minutes. If I didn't, her relatively calm self would melt down completely, sobbing and crying and losing her mind for reasons known only to her.


My car lost its brakes this weekend, so today, when I took Liv to the doctor, we had to take my husband's car. A different car. A car she doesn't usually ride in.


When you have a two year old who doesn't speak, can't walk, is developmentally delayed with some (occasionally) severe sensory issues, changing cars is akin to throwing a cat into a bathtub. It doesn't end well.


She's not distracted or assuaged by food or activities or songs. A lollipop won't cause her to shift her focus and stop. When Liv is in total sensory meltdown, it has to wind itself out. No one can stop it, we can't control it, and she's incapable of working through it on her own.


If I was unable to communicate myself on a daily basis, yet understood everything around me, I'd probably lose my mind too.


She's sensitive, sometimes, to change. Certain sounds bother her, like when I run her bathwater, or wash dishes in the sink. I know which songs on my playlist to avoid, and we always have to stand in the shade because she has a coloboma in her left eye which makes her so sensitive to light that she can't handle processing that either.


She's not autistic. She's nothing. She has no diagnosis, or condition, that we've been able to find, in spite of more testing than I can even explain. Liv is special. She's funny, and adorable, and silly, and she's a joy to my heart in ways I can't begin to describe. But she's different.


She's a 'special needs' kid.


We had to go by the bank today. And it was busy. Very busy. She was in sensory meltdown, so she was crying like a howler monkey, throwing herself back and trying hard to get on the floor where she could smush her face into the ground and block everything out. But we HAD to go to the doctor, because she needed to get her leg braces fixed. I have three other children. Sometimes, life happens in spite of Liv's needs. I can't allow her issues to slight my other children, so she often has to go out in spite of how badly she may be coping.


Today she wasn't coping.


Liv was so loud, so unhappy, sobbing SO angrily, that the bank manager came over and asked me if she was okay. If he needed to call anyone for me. If I had it under control.


People stared. They watched, and whispered, and wondered. You could see the wondering, and while I don't make excuses for my child, I also don't expect others to understand her.


We left there, and I know that many had thoughts about my obvious inability to parent my child. They talked to their husbands, their friends, about the lady in the bank with the bratty kid. They thought to themselves that I'm neglectful, or selfish, or self-absorbed, since I wasn't disciplining Liv for her behavior.


I was massaging her legs, rubbing her back, holding her close to try to help her cope with the sensory input, but I wasn't disciplining her. It'd be like yelling at a wheelchair-bound child for not walking.


Except with a kid in a wheelchair, their struggle is obvious.


Nothing about Liv is obvious.


So, for the hour drive to the doctor, and the hour and nineteen minute drive home from the doctor, I sang "Itsy Bitsy Spider", over and over and over, as her beautiful brown eyes watched me in the rearview mirror, my song helping her stay calm. Something about that one song works for her.


So I sing that song for my lovely girl. My beautiful, precious, hilarious, special girl that God has given me as a blessing beyond compare. I can't explain her to anyone. I won't explain her to anyone.


She's difficult, sometimes. But she's MINE. She's my heart, a piece of my soul, and I won't justify my baby to anyone.







15 comments:

  1. Jess I feel for you! My oldest son, who is now 4, was recently diagnosed with sensory processing disorder. Now that he is older he is able to deal with it better but when he was younger I would go through the same things. The stares and opinions of others bothered me even more. Like you said because visibly there was nothing that looked different about him people thought the worse in mre and him. I have had to really work through those issues and still struggle. He is currently in occupational therapy and is getting tremendous help. Just wanted you to know you aren't alone and hang in there.

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  2. Liv is one blessed girl to have such a strong Momma! People are so quick to judge. Such a shame about our world. But she will always know your love and we all know that at the end of the day, that's what counts!

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  3. Beautifully said. And you don't have to explain her, you are who matters, you and her. Let there be stares & whispers. She is a precious gift. Stay strong momma!

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  4. So amazingly beautiful. This brought tears to my eyes.

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  5. So amazingly beautiful. This brought tears to my eyes.

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  6. She is a beautiful little girl! Forget the whispers and stares, you sound like an amazing mom! :)

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  7. i'm so in awe of how strong you are. and the respect you show liv by loving her and caring for her the way you do and not justifying her to judgemental idiots. what a good/sweet mama you are :)

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  8. She is hands down adorable!!!! Don't worry about others. It's like what Dr. Seuss says "those who matter don't mind, those who mind don't matter!" :)

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  9. She is absolutely beautiful! I love her toothy smile ; ) You sound like an amazing, strong & caring Mom...keep doing what is best for you and Liv and don't worry about the wispers or stares. You are a blessing to her as she is to you : )

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  10. That may me cry. You are such a good mama.

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  11. Maybe it's the pregnancy hormones, but this post made me cry like a baby. I can only imagine the looks and responses she received from other customers in the bank. It is so cruel how people judge others without a hint of a clue about their past, or what is currently going on in their lives. What a great mom! I feel so inspired after reading this!

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  12. She is lucky to have you as a mom. It's obvious how much you love and care for her.

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  13. I don't know anything about having a special needs toddler, but I do know about having a toddler and it's hard. You show so much love with your daughter (and your others) all the time. And so much patience. So while you may have gotten judged, who the hell cares. I actually needed this little reminder about our little people.. Thanks Jess.

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  14. This is so perfectly written. I struggle sometimes with deciding if I should explain Noah when the lady at the register hands him a sticker and he ignores her. People assume I'm raising a rude kid when really, he's just too busy looking at the lights on the ceiling or watching other people. It's hard when they have issues that aren't really visible.
    This was so beautifully put, as always.

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  15. Simply put... this is beautiful! Thanks for sharing. I am glad there are such proud and strong mamas out there!

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