Day to Day
- On one hand - Being a parent is hard work no matter what, no matter how many kids you have, no matter if you're working or not, no matter if you're the mother or the father. (This post describes that well.) I learned with Zoey that medically typical kids are fully capable of taking all the energy you've got. Kudos to all the parents out there - you're all working hard.
- On the other hand - Being a special needs parent is like having a full time job on top of the regular parenting gig. You attend hundreds of hours of appointments each year with specialist doctors, therapists, and other health care workers. You learn how to do specialized medical procedures that would normally be done by a doctor or nurse. You keep meticulous track of little things like food intake and medicine schedules.
- Someday, when I am interviewing for jobs and asked to explain how my "gap years" as a stay at home mom will affect my future job performance as a lawyer, I will tell them about how I had to read through insurance policies with a fine tooth comb and file appeals; how I had to research different procedures that I knew very little about and try to decide between alternative courses of treatment, none of which were perfect; how I had to keep track of a complex and ever changing fact pattern (my son's medical history); and how I had to advocate for my son when the doctors treated him like just another thing on their to-do list.
Worries
- This might be stating the obvious, but when your kid is experiencing acute health trouble, your stress and worry level is through the roof. I thought I knew about worry when I moved out of state for college, when I graduated law school without a job, when I took the bar exam...but those things were *nothing* compared to what it's like waiting for your baby as he goes through major surgery.
- More surprising to me is this: Joshua's health is better than it has ever been, but the worry is still there, right below the surface, always ready to rear its ugly face when a new issue arises. Joshua's had good health for the last year, but there have been a few stretches where health concerns have come up and it feels like you're back at square one, in full panic mode.
- I worry about Zoey, too - I hate it when she gets a bump on her head, or when her fever spikes above 100 - but it's different. I've never had to worry that something happening to her is going to lead to surgery or hospitalization or have other serious long term health consequences.
Development
- It's remarkable to see how naturally things fall into place for medically typical kids, and conversely, how much work it takes to get a skill in place if it is somehow missed during the normal course of development. It's amazing how interdependent early development is. For example, if you learn to eat solid foods in the typical way, then you get fine motor practice (picking up Cheerios with a pincer grasp, using a spoon to scoop your mashed veggies) and you strengthen your oral motor muscles for speech as you chew. If you are delayed with eating, then you might end up being delayed in fine motor and speech as well, since these skills are all interrelated. And all of early development is like that. If you get behind, it takes a lot of work to get caught up.
- Special needs parenting makes you realize right away how deep your love for your child is because they are immediately threatened. You love all your children instantly, whether medically typical or special needs. But you develop a deep bond with the special needs child because they have a particular vulnerability caused by the needs of their body, and helping and protecting them through their difficult experiences creates a unique and strong relationship.
- Special needs parenting impacts your faith, your relationships with others, your ability to work, your finances, and your day to day life. Parenting in general affects these things, too, but special needs parenting turns your whole world upside down in these areas.
Specific stuff going on with Joshua now:
- Joshua has an appointment with his nutritionist tomorrow. We have been going through the slow process of weaning him from his feeding tube for the last year, and she is the one who tells us whether we can decrease the amount of food that he takes by tube. She does this by checking his food intake (both number of calories and nutritional content). He has gained weight and increased his oral calorie intake, but he still eats a very narrow range of food (mostly fruit and dairy, no table foods), so it's hard to guess what she will say. Right now, he gets about half of his calories by mouth and half of his calories by tube.
- Joshua has been snoring and having some other breathing issues when he sleeps, so we are checking in with our pediatrician this week and with the craniofacial team later this month. We are really hoping that the breathing issues are related to allergies and can be solved with medicine. Joshua hasn't had any significant problems with sleep apnea since he was 12 months old, so we are hoping this is an unusual and solvable anomaly.
- Joshua has an IEP Eligibility meeting on Wednesday, where he will presumably qualify for developmental preschool. I am kind of freaking out about this (he seems so young to be starting school at all, let alone 15 hours a week!), but I am also grateful for the opportunity to treat developmental delays intensively at an early age so that he has a much better chance of being "caught up" by the time he hits grade school.
I will do a post next week about how all the appointments this week turned out.
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