So, being a parent is tough, and I may be biased, but being a mom is especially tough. Moms carry so much of the weight to being these little humans from just a couple of cells to a full-grown, functioning adult—literally, and emotionally. Every one of their successes is our success. Every one of their struggles is our struggle. Every one of their stumbles takes us down with them. We feel innately responsible for every scratch, every social struggle, every perceived fail, and every moment that just doesn’t go according to plan.
All of those feelings can increase exponentially when you are the mom of a child with challenges other kids don’t fight against everyday. As a mom of a child who has very specific and special needs, the knowledge of how hard life is when most things are in your favor, you become acutely aware of every moment and situation that goes poorly. It’s disheartening when you come to learn that many of your child's struggles have a definite source, and that things you have done along the way may not have made things worse, but they haven’t exactly made things better.
My daughter is amazing. She is so smart, so funny, so imaginative, and so talented. When I watch her at her very best, it is like watching some amazing feat of sorcery. She is a magic I often can’t believe is a part of my life. She dances. She makes up songs. She creates puppy families out of stuffed animals, and at the end of last week, her teacher told me she led several of her friends in a puppy training academy.
Every time I witness or hear something so special and amazing about my daughter, it nearly makes me cry. Seeing her succeed at being happy, while outwardly succeeding in the eyes of others fills me with joy.
Most people don’t see anything unusual about my daughter, and most of the time, there isn’t anything to see. But about a year and a half ago, I started to notice something that wasn’t there before. If I took her to our local children’s museum and there were a large number of other families or children there, she would become visibly anxious. As the noise level increased, I could see her become hesitant about playing, somewhat aimless and without direction, and a little more difficult to guide. I filed the observation away, somehow suspecting that it might be important later, especially if it continued. At nearly the same time, her tantrums escalated. We’d had the moments at Target when she would lie down on the floor and refuse to cooperate. We’d had the moments when you just have to leave places because she was overtired, or just disinterested in grown up activities. What we hadn’t experienced was a child who would become violent, aggressive and out of control. We hadn’t dealt with a kid who almost literally had to be pinned down to keep her from hitting, kicking, biting, scratching and throwing things.
She had struggled, off and on through her first year of preschool. I started to feel that at the rate we were going, I might be able to paper her bedroom walls with all of the behavior reports I was signing, because she couldn’t be calm, sit still, be less disruptive, or less all the things she was. Things came to a head near the end of the year when she began hitting her teachers. It was a rough year, but I didn’t know enough to know that What was happening wasn’t strictly “bad behavior”. And as a modern parent, trying not to get too caught up or wound up about things that were “normal”, I started to believe that maybe the expectations for her were just too high.
Her teacher and school recommended play therapy, and we agreed to a work watch, wait and see approach to the situation. Her ability to return for the next year would be dependent on getting these behaviors under control. When we couldn’t get her started with play therapy right away, her teacher suggested having her evaluated for occupational therapy. As she went back with one of the therapists for her evaluation, I filled out page after page of questions about her behavior, her ability to perform basic self-care tasks, her responses to sound, light, taste, touch, smell and other stimuli.
I knew she was hypersensitive to many of the things in the questions, but at the time, she was too functional to meet the requirements for occupational therapy. I filed the experience away, still believing all of this might be important later.
It was a busy summer of weekly play therapy appointments, reading assignments for us, and digging into dramatic changes in how we interacted with her. She would do a little better, and then do a little worse again. She would go a week or two without trying to hit me, and then she would seem to suddenly lose her mind. During all of these aggressive episodes, she would laugh, and act like a crazy person.
I knew not to take any of it personally, but even on my best day, she could push me to my breaking point. I constantly felt like I just wanted to run away. I would start out each day, resolving not to let her wear me down. And by the end of most days, I was fraying at the edges.
By the end of July, I knew she wouldn’t be ready to return to her school. Her good days were still too inconsistent, and her behavior was still too unpredictable. She wasn’t having a lot of success with potty training either, but the truth is, her other issues were so big, I just couldn’t fight that battle at the same time.
From the end of July to December, I continued to read more books, try new strategies, put together calm down kits, and even had one-on-one therapy sessions to address some of my own reactions to her behavioral outbursts. I felt stronger. I felt more capable. I wasn’t getting as upset when these events would happen. And I thought she was doing much better, too.
We decided to reach out to her school, and take a risk. We talked about her progress, strategies, plans, and how much she wanted to come back. We all believed she could do it. We all believed that we had realistic expectations, and were willing to roll with some punches, because we knew there would be punches.
Within two weeks of starting back, and two extremely unpredictable and disruptive behavioral outbursts, I knew she was done. I knew giving it more time wasn’t going to help. And I resigned myself to the reality that I had a child who could not succeed as things were in that moment. We lost an important family friendship, and I found myself withdrawing with her even more. I felt I had to protect other people and kids from what she might unexpectedly do.
It was very isolating. And as I recently read in another blog, I felt pretty alone, and as though I didn’t have a place to belong among other moms. Sadly, I watched my daughter become more and more lonely, and isolated as well. Some of our worst episodes revolves around her not having friends to play with, and being lonely. I knew she needed social interaction, but I was afraid of any situation that didn’t include me being right there to intervene.
By the beginning of the summer, I was really thinking about what next year would look like. I could not imagine any situation in which she would be ready to go to kindergarten, and yet I was terrified to try another preschool situation. I cautiously decided to try a couple of days of summer camp at the same facility that had performed her original occupational therapy evaluation.
It did not go well. On her third day, I picked her up just in time to watch as she jumped off a chair she had intentionally urinated on, and then run across the room, taking every stitch of her clothing off. At this point, all of my hope was gone. The only glimmer was that one of the therapists had noticed my daughter having some sensory issues, and had asked if I would be open to having her re-evaluated. Her play therapist had actually suggested the idea near that time, and we just hadn’t had a chance to look into it again.
She had her second evaluation the day before the urination episode. When the therapist returned my call offering to pay for the chair, she reassured me that the only thing anyone had thought was that they were glad it hadn’t been their kid. By the way, she qualified for occupational therapy, and we could start right away.
I was relieved. What I had noticed a year earlier truly was important. I was still afraid to leave her there, but the therapist shed a few tears with me, hugged me, and told me that they had seen just about everything a kid could throw at them, and it would be fine. Within a month, she also qualified for speech therapy, and physical therapy.
I still didn’t fully understand the struggles my daughter had been dealing with. It was just two weeks ago, when a therapist talked to me about putting her in a full body sensory sack, and how quickly it helped her de-escalate. That was the moment I finally got it. That was the moment that validated my instinct that the other moments I had filed away were just as important as they had felt.
And now, even as I know more about what she needs, I am already feeling less alone, and more empowered to help her. It’s tough. Days of gathering and filling out the paperwork or supplemental insurance to help cover therapy when our regular insurance cuts us off, and dealing with some of her more difficult sensory needs offers a steep learning curve, and the opportunity to remember the importance of a sense of humor. Try searching chewable massager on Amazon and sifting through the results, without thinking of “the Red Room.” Yeah, that “red room”.
I carried her for forty weeks, and I will carry her forever. Even at the hardest moments, she is worth the weight.
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