My Wild Child Carrie Anne

by Christy M
(Louisiana)

From the moment I brought Carrie Anne home she exhibited signs, which looking back I can identify, but being a new mom I chalked it up to my inexperience but deep down I knew something was different.

She hated being swaddled or anything that covered or restricted her feet, from birth she could kick and get out of the tightest swaddle. She cried anytime I put her down for more than a few moments unless it was in her rocker, the only way she would sleep was being held upright on my chest I spent her first year in a daze and still don't know real sleep. I tried to take a hardline like people tell you but she would scream and cry no matter how long, she wouldn't wear out.

She spit up every type of formula and to this day(3 years) has gas issues. What really got me thinking was the day I took her into a public bathroom, she screamed and cried(4 months old) like she was in pain, this happened everytime and I couldn't understand why. Its not like she had some traumatic experience in a public bathroom it was her first time.

At her 12 month well check her Dr was concerned about her lack of words, she maybe had 3 solid words and mommy wasn't even one. We were referred to our states early steps program where autism began to come up frequently. Then I began my search to educate and learn if this was where she fit or was it something else. Luckily I found a great speech therapist who adored her and fought for her which eventually gained her a wonderful OT, I came to to SPD through my own research but the first meeting with her OT confirmed it. She said she was the most severe case she had seen in 20 years which was a shot to my heart but I cried for a day then got it together, my baby needed me.

Carrie Anne is a sensory seeker, she is constantly running, crashing, jumping. She has an uncanny pain threshhold, she can slam headfirst into a wall and bounce up and keep going but on the other end you can tap her and she screams like you hit her with a bat. I thought she would grow out of not sleeping but at 3years old I've still never slept a full night and naps don't exist. Nights are insane, she will just go crazy. She has to rub and kick her feet which is not fun if you end up on the receiving end.

She cannot tolerate hot food and many textures, her list of foods she will eat is embarrassing. She has always had oral sensitivity and still puts everything in her mouth. She used to test the temperature of food with her feet. People don't believe me when I tell them that the more I try to wear her out with physical activities the more she gets revved up.

She loves to swing, it calms her. She loves to be squeezed and tickled but after she has been in her sensory tunnel she can't stand to be touched. It's a knock down drag out to get her to wear anything but 3 dresses, My mom says I need to just make her but she has no clue.

It has been an isolating experience, I've lost count of the times where strangers have stepped in at a store to help me when she has had epic meltdowns where she is inconsolable. The looks, the judgment, the unsolicited advice are bad enough from strangers but my family is the hardest, if I hear you should whip her, or leave her with me for a week, or it's just a phase she will grow out of it one more time I'm gonna lose it.

I've worked in early child care and have 10 nieces and nephews so I know what average behavior looks like. I wish it was a discipline problem, that I could solve easily, but it's not, I see my child struggling and that she can't help it. When she watches something on her tablet(I'm not a fan of screen time but for her it's recommended because it's almost impossible to get her to attend to a task for more than 30seconds)she has to kick her feet and move her lower body unconsciously.

The slightest noise or a spot on the wall will distract her. Her hearing is scary good but certain noises bother her. I have my king size mattress on the floor because she does flips and rolls constantly unconcerned with who she hurts in the process. She has to crash into you when she comes to you almost knocking you over. She can't sit in a seat, she has to stand and kick and jump.

I worry for her future, because I know kids like her often get labeled as discipline problems in school by those who are not educated in this disorder but I'll educate them and never back down as her at advocate because she is amazingly smart, and it took allot of work but her speech has surpassed kids her age when she chooses to be verbal. Sometimes it's like she can't get the words out because her body is too tight, it resembles a seizure but not as severe.

I could write a book on all her different eccentricities,it's like I'm a constant barometer watching her and adjusting her environment. As I type this she is doing head stands and watching a foreign language cartoon at the same time. I had to stop typing because she flipped off the side of the bed, luckily I put the bed on the floor surrounded by stuffed animals and pillows. It's funny that although she can be clumsy and is constantly falling, bumping into things she is extremely agile amazing anyone who sees her play on climbing or gymnastics equipment.

This experience has been exhausting and an emotional roller coaster and she is only 3 but we have to stay determined and keep bringing awareness to anyone that will listen because the biggest hurdle our children face is ignorance, which no one is to blame, people just don't know.