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.
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.