As you may know, I’ve been struggling with my daughter. In spring of 2016, she showed her school she could do advanced math calculations. She was on the rise in every way, and I was on top of the world.
And then puberty hit. This is naturally a difficult time for any kid, but for children with autism, puberty can set them back. We saw a regression in cognitive skills, leading all the way up to a regression in gut issues, this spring. We have been dealing with that crisis daily.
Personally, I have not seen any other major life changes that could be toxic other than puberty – and stress. To say the last 1.5 years has been stressful would be an understatement. My gut is telling me that contributed to some of her regressions.
Then in the spring I pretty clearly felt God telling me to move away from homeopathy, which had worked well in the past but it had just plateaued this year. It was very difficult for me, but I did, and then moved onto working on biomed with a MAPS doctor.
That, too, has not been easy. It’s costly, he’s not that close to home, and there are so many supplements – always a challenge for kids. On our second visit, we mentioned that we hadn’t had any progress in gut issues, and her eczema was worse, so he made a few changes.
And I waited. I also very clearly heard God calling on me to rely on Him. Did He want me to stop doing anything, or everything? I’m not sure, but I took to my knees night after night, begging Him to help my daughter. Sure, I want her to be a math wiz again, but what I really want is to cure this troubling gut issue.
Last week, Chris noticed that the skin on her arms seemed clearer. That was not the only thing we noticed. On Friday, we went out to eat at a nearby place because we were exhausted and overworked. My daughter usually has a fit in this place until the food comes. This time, she didn’t. I didn’t even realize it until we were waiting. As she sat on a bench, a boy jumped on it next to her. She let out ONE single scream – and that was it.
After we sat, I started to get irritated at the noise levels and immediately looked at Zoe. If it’s bothering me, surely it’s bothering her? But, no, to my surprise, she was happily stimming in her seat.
She asked to go to the bathroom during dinner. Now, this restaurant is notorious for keeping the bathroom at subzero levels. Usually, Zoe doesn’t mind. She is hypersensitive to heat, but never feels the cold. If she does, in fact, she never complains or mentions it.
The minute we opened the door, she rubbed her arms and said, “Cold!” I was surprised, but maybe it was the hot day she’s spent swimming? I had no idea but Chris and I took everything as a good sign.
When you have an autistic child, every baby step forward feels like a milestone.
The weekend ended, and on Monday she had her first day of school. We were worried the kids would get out of bed but she was up at 5:30, 45 minutes before she had to be up. She was excited to go. Unfortunately, it was not a good first day: a long struggle to get her off the bus and a TON of behaviors. Both kids were not used to the early hours and they went to bed at 7:00PM.
I need to tell you that in her ENTIRE life, even when sick, has Zoe never gone to bed that early. 9:00 PM is often the earliest, sometimes sooner but rarely. So on Day 2 of school, Chris and I repeatedly tried to get her up, but she didn’t budge. In fact, she slept until 11AM!
That’s over 15 solid hours of sleep! I thought she might be in a coma, but thankfully I was wrong 🙂
On Wednesday, she returned to school. She was cranky and I wasn’t expecting much from her. The day after being sick or out of it is traditionally NOT a happy one, and she was fussy about her vitamins and her food. I didn’t hear from the school, so that was a good sign. When she came, she was in a great mood and her paperwork said, “15 minutes to get off the buss” – that’s awesome!! And NO behaviors, zip, zero, NADA.
I was thrilled but I also know that these reports can be fickle, so I was cautiously optimistic.
Later that day, we ran out of time so we fed the kids allergy safe pizza and went to order food for ourselves. Every 1-2 times a year I get Chinese food (and I ALWAYS regret it), so we got that. I will never let the kids eat food like this – not even the rice, which Zoe was pining for. She is allowed to eat rice, but I don’t want her touching this crappy rice. Honestly, I didn’t even want it.
We were at the table and she went and grabbed for it. I looked at her and said, “You can’t have that!”
She looked me right in the eye and said, “Why?”
My husband and I were stunned. Zoe will be 12 years old in about 3 weeks, and while she can speak responsively she struggles with expressive language. In all these years, not ONCE has she ever asked “Why?” about anything. She hasn’t even communicated the idea of asking for a reason about things as far as I know. She’s been taught it, sure, but asking on her own? I’ve never seen it.
Chris and I were so stunned that we immediately looked at each other. Then, we looked at her and he beat me to saying, “Because she said so!”
I have never been so happy in all my life to have a cliche uttered at my kid, especially one I’ve never had the opportunity to say.
All this time, it felt like nothing was going on. I was worried and upset. To see a flash of brilliance and have it vanish completely – that scared me to death.
This, though, is the progress of healing the negative reactions caused by the extremely complex biological and chemical mechanisms behind autism. I always forget that every step forward brings steps back.
I forgot that detox brings die-off. That 15 hour sleep may have been 15 hours of her body relaxing from detox, or in the process of detoxing.
I grew a little in my knowledge too, this week, learning treating fungus in the gut can take the better part of a year.
And I remembered that God has been with me every step of the way, even if what He wanted from me MOST of all was to beg for His favor in helping my child.
That said, I have no illusions that the rest of this week will be smooth sailing but I’m going to celebrate that she asked “why” for the first time ever. That is her first step onto learning to speak up for what she wants and learn to advocate for her rights.
And today, that’s MORE than enough for this mama.