31 Days of Parenting Kiddos with Special Needs: My Story

31 Days of Parenting Kiddos with Special Needs

It’s interesting that this covers the month of October because I found out I was pregnant with the kidlet on October 11, 2008. It was simultaneously a joyful and terrifying thing. 🙂 I was due around Father’s Day 2009 and it seemed like it was going to be a semi-normal pregnancy… until my hands started swelling in March 2009 and strange symptoms started happening. I had no idea that I was going to have to have an emergency c-section at 29.5 weeks gestation because of Class II HELLP Syndrome and that Daniel’s birth weight was going to make my 3 lb 12 oz. one seem gigantic. (Kiddo weighed 1 lb 15 oz. and was 14 1/4 inches long.) I think it’s probably good that God didn’t let me in on that little fact when Jon and I decided to try for a baby because I can *TOTALLY* see myself pulling a Jonah and figuratively fleeing to Tarshish!

Daniel was pretty tiny and he did have a lot of growing to do… but he is definitely *MY* child because he ignored the memo on all of this and decided that 3-4 months in the hospital was a little too long to hang out there. He came home on his 2 month birthday and did not require oxygen. He did have an inguinal hernia that we eventually had repaired (once he was old enough for anethesia) and ROP but that corrected itself as well.

While he was as fierce as I am about overcoming things, he did unfortunately have a 50% developmental delay and we started him in physical therapy at 13 months old, occupational therapy at 17 months old, and speech therapy a little after he turned 2 years old. He didn’t sit up until he was a little over a year and a half old and didn’t take his first independent steps until he was 2 1/2. He is only now really using a pencil well with special grips and is finally developing speech and sentence structure. The good thing is that when something developmental comes for him, it takes off like wildfire so I’m thinking he’ll probably be talking somewhat well by his next birthday?

His immune system was also compromised because of prematurity and that unfortunately meant that he could not fight off basic infections, especially respiratory ones. The scariest one was probably the one that landed him on a ventilator for a week and a half in the PICU at UC Davis Medical Center followed by a bit more than a week on the pediatric unit. We’ve also seen quite a bit of time in various pediatric ER bays at UCD and had a couple more smaller hospitalizations, the most recent one being a week-long one three years ago.

He was diagnosed with autism at age 2 1/2 and started school in an ABA preschool class at age 3. We added in-home ABA therapies a year later. Four years later, he is still in an autism-specific class but we’re OK with that and he seems to be thriving with it. Let’s just say that I have become almost an expert on IEP’s. 🙂

A year ago, his pediatric neurologist diagnosed him with ADHD and put him on Adderall. While this is not a popular decision in some of the circles in which I travel (because, you know, ADHD *TOTALLY* isn’t a thing… except when you have a kid with no off switch), it’s been a lifesaver for us and for Daniel. He can sit down to play and focus on what he is doing, freeing me up to take care of my own school, do housework, take a shower, eat a meal sitting down… We’ve seen a child psychiatrist who met with us monthly and his pediatrician up here in Washington sees us regularly as well as his Adderall requires a special prescription and in-depth supervision.

So what would you like me to write about this month? Leave me a comment to let me know and I’ll see what I can do. 🙂

2 thoughts on “31 Days of Parenting Kiddos with Special Needs: My Story

  1. Having had many marital issues with our own special needs kid (with a very different diagnosis) I would love to hear more about that aspect –only if it is in your comfort level of course.

  2. Post about as much as you can…while I don’t have a child with special needs, I desperately want to give as much understanding and support as I can to friends who do. The more I learn, the better…so glad you’re writing this month.

Comments are closed.