I wonder sometimes how I continue to get out of bed everyday.
If it weren’t for Prozac, the kids and my job, I’m not sure that I would be able to.
I woke up this morning feeling like an elephant was sitting on my chest. I fell asleep last night with the same feeling.
Anxiety creeps in when you don’t expect or want it.
Not Sure Where I’m Going With This
Dyspraxia is a neurological issue in which your body doesn’t always get the messages that your brain is sending. It leads to problems with motor planning, which leads to many kinds of issues for kids.
Lily’s issues are with motor planning, which explains why she took so long learning how to ride a bike and does not like most physical activities. There’s also issues with speech but clearly that’s not an issue. Speech therapy paid off.
One of the biggest parts that bother me about this is that it’s a developmental disorder, a major criteria is premature birth and delays as a baby/toddler.
For those of you late to the story, Lily was born at 37 weeks and 1 day- barely. I went into labor twice before she was born, at 31 weeks and three days before she was born. It was a complicated pregnancy.
In 2008, full term was considered to be 37 weeks and beyond. In 2020, Lily would be a late preemie, since anything short of 40 weeks is considered premature.
Lily had multiple delays and here we are 12 years later, again facing an uncertain path.
Luckily, I have a lot of friends on Facebook. I talked to two of them about this. One is another mom and the other is a former coworker who was diagnosed last year as an adult.
It turns out Lily and the other girl are a lot alike and if we didn’t live an hour apart, we would probably get them together. It felt great to have someone to talk to who gets it.
We talked about school, personalities and adulthood. One of my biggest worries is that Lily won’t be able to live independently as an adult. I may end up going for guardianship. (I may do this for Julian, but that remains to be seen.) I was so glad to talk to her.
The former coworker told me that her parents didn’t quite get her issues when she was a kid. She was also bullied in school because of her physical difficulties, as in gym class. I hated to hear that.
I’m not 100% sure on what to do, I can do my best, right?
I emailed Lily’s pediatrician to get a referral to get a neurological evaluation. I think that would be a hugely helpful step. Ironically, the place I asked for is part of the neurology practice Cameron and I go to for migraines.
She’s staying in OT as long as her insurance covers it. She’s doing well and enjoys her sessions. I laugh at this because when she was a toddler, she would completely lose it when the OT had her do certain tasks. The irony is not lost here.
Whenever school opens, I’m going to request a meeting with her teachers so they can give me input for the neurological evaluation.
There are things that Lily can do at home to help her skills, for example, applying makeup can help with fine motor skills. I have time and eyeshadow that I don’t use. Bam.
Most of all, I will need to work more on my patience with Lily. This is a hard one sometimes but definitely worth doing. There will be good and bad days. We just have to keep trying.