Some mornings, it took me and the school nurse to get her dressed and to her classroom. Once she was there, she settled right into her day and was fine. Some mornings, she would be ready to go early, and content. Other mornings, the slightest thing...like putting on socks brought out temper tantrums like I couldn't believe. I treasured the good days and cried with her on the bad ones. I wasn't the best mom and sometimes I would react in tears and anger right along with her. Other times I was able to keep a calm, reassuring voice.
I quickly discovered that we HAD to have socks without seams at the toes, or very small ones on the outside of the sock. That underwear had to have a certain elastic around its edges. That nothing could have a tag, be too tight or too loose, or hang down too far. Pants had to be a soft knit and elastic waistbands of a certain size were a must. Any shoes outside of soft tall boots or flip flops resulted in explosions. The best thing I discovered along this journey was that if she puts her clothes on the night before, she is used to the fit/feel by morning. She had three outfits she liked, and I did laundry every two days.
As mom, I knew this wasn't just something she was choosing, or that she was acting out of manipulation, or that I could just wish this away. So God and I have spent many hours discussing the situation, with me pouring out my heart in tears wishing I could carry this one for her, and feeling as if we were the only ones fighting this battle.
From every side, I have heard how its just me and my lack of parenting, that I'm an over indulgent mom, that she just has behavior issues and I need to stick to my guns and break her down, that I just need to try harder.
This was our constant, behind the scenes battle for most of kindergarten through 2nd grade, where she also faced more change in her life then some people do over their entire life...which just brought out more fits and frustration with fit and feel.
Then in third grade, things had settled into a new normal, and she was in the bigger kid wing of the school. She had built up a pretty good relationship with some of the staff and felt more secure. The hard days were so few that when they popped up it felt devastating because we had sort of forgotten how bad it could get. I wondered if her original pediatrician had been correct and if she had outgrown it. And I was thankful for her good days. And when she was on roller skates, it was as if she had no struggles at all...she could just be a kiddo enjoying life. The trampoline was another activity that just allowed her to be herself. Third and fourth grade, even after a move in the last two months of fourth grade, were much calmer for her...and the few tricks we had learned along the way were helpful.
Then fifth grade. All summer she dreaded it, scared that she would be behind. Which seemed so crazy because she is brilliantly smart and never had any trouble catching right on after being out sick (and she has had steep throat and ear infections often enough that perfect attendance has never been an option). The nightmares and sleep walking started up again, separation anxiety became overwhelming to her again, shoes became things she hated. Everything began to throw her and she started commenting that she hated life and it was too hard. She would cry herself to sleep, and I would do the same. And by this point, I wasn't even talking about how bad it had gotten to anyone, because it was just too hard to hear all the comments that made me feel like I wasn't trying hard enough, my discipline methods were failing, and that I was failing her as her parent. Her older sister and I just tried to be here for her and help the best we could scramble to do. And her teacher has been amazing at sensing when she is overloaded and needs a bit.
On top of all the changes that happen in fifth grade, trying to get them ready for middle school, this year has been a bit rough with other changes...struggles with relationships, knowing one of her favorite adults was stabbed, feeling as if everyone was going to walk away from her eventually, just to name a few. Reassurances didn't help much and the clothes and shoes issues escalated so much that there have been times we haven't been at school on time...something that's never happened before this year.
I finally started letting people in a little more. Telling people what it was like around here in the mornings. Allowing myself to cry on people's shoulders. Not trying to be strong all by myself. And sometimes, I got the same reactions that I dreaded hearing that just made me feel like a failure. But I also got challenged. To start researching and seeking help so this doesn't continue to negatively impact her ability to function. And then right after the challenge, I was "introduced" to a mom who face similar struggles with her daughter. She encouraged me more then she will ever know and right after getting off the phone I finally allowed myself to start investigating things..,to not be scared of her being labeled but seeking ways to help her cope/adapt.
I knew she struggled with her senses and had heard the term sensory disorder. And oh the encouragement from researching it. Sensory processing disorder. According to the checklist, the only sense she doesn't react to in extremes is taste. The other four, she has struggles in. The extreme fits and tantrums are caused by neuron overload as her senses shoot up so many messages to the brain that she just can't handle it and the tantrums erupt. She isn't choosing this, it's something she will have to learn to adapt to and cope with off and on for her entire life. There is a reason for the struggles.
But there's also hope. We live in a city, now...after a three hour move...that has multiple Children's Mercy Hospitals. All three of the ones by us have sensory integration therapy. We aren't the only ones facing this type of struggle. That means the world to this momma! More then I could express in type.
So, today we began our newest journey...the one to get this precious girl the help she needs to no longer allow her struggles to confine her or leave her feeling defeated. Calls were made all afternoon trying to get her a pediatrician in this area that understands her struggles and actually cares, and to get the ball rolling to get an official diagnosis so that she can get into the integration therapy. I was able to leave a message with the people who can get that ball rolling for us.
This has been going on for long enough now that even just knowing the little bit that I have discovered already has helped me to react calmer, to remember she didn't choose this and isn't reacting that way on purpose, that this is a very overwhelming struggle. I hope I am becoming a stronger person for her and that I will not give up until she is truly getting the help she needs to be able to thrive despite the sensory overload. I hope I can help her to believe in herself and to find that life can be a joyful adventure. Because this is the adventure and journey that we are on!
Welcome to our journey.
