31 Days of Parenting Kiddos with Special Needs: Developmental Delays

31 Days of Parenting Kiddos with Special Needs

For the next couple days, I’m going to focus on the conditions Daniel has that put him in the special needs category. The first one will be “developmental delays”.

What this actually means: His development is behind what experts mostly agree are accepted milestones for development. In Daniel’s case, for example, he did not roll over until a certain point, did not sit up until 20 months old, was not crawling until around that time, and did not walk until he was 2 1/2 years old. We thought these were probably due to his prematurity (29.5 weeks gestation at birth) but genetic tests done 5 years ago are suggesting that they might be from the same genetic microdeletions that they think caused his autism.

How we treat it: Kiddo has been in physical therapy on and off since he was 13 months old, occupational therapy on and off since he was 16-17 months old, speech therapy since age 2.

How you can help out friends with kids in the same situation: Please refrain from making comments like, “[kid’s name] isn’t doing [insert milestone] yet?!?!? MY child did [insert milestone] at [insert insanely early age].” Believe me, we’re aware of how far behind our kid is and that comment is really rude.

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. 🙂

31 Days of Parenting Kiddos with Special Needs: And So It Begins

31 Days of Parenting Kiddos with Special Needs

So here we are again. The Write 31 Days challenge is upon us and I had to come up with a topic for this month. As it is constantly on my mind these days, I picked “parenting kiddos with special needs”. I am hoping that whatever I write will help to encourage or educate or at least resonate with someone and make them feel less alone in their parenting.

This post will be stuck at the top of my blog for all of October so that y’all can have links to the things I am writing.

For the sake of disclosure, the graphic for this event is a picture of Daniel taken by his physical therapist at a park date with her in December 2011 and altered in MS Paint. (Canva wasn’t doing it for me this time.)

Day 01: My Story
Day 02: Developmental Delays
Day 03: Autism
Day 04: ADHD
Day 05: IEP’s and 504 Plans
Day 06: Blogger Spotlight on Mary of “Passionate Perseverance”
Day 07: Blogger Spotlight on Kelly of “This Ain’t The Lyceum”
Day 08: Doctors
Day 09: Information Literacy
Day 10: School Choices
Day 11: You Know You’re The Mom of A Developmentally Delayed Kid…
Day 12: ID Bracelets
Day 13: Checking In
Day 14: Snarky Answers to Stupid Remarks
Day 15: Blogger Spotlight on Rebecca of “Backwards in High Heels”
Day 16: Choosing Life (I)
Day 17: Choosing Life (II)
Day 18: Autism Speaks
Day 19: A Day in My Life with Daniel
Day 20: Blogger Spotlight on Kathleen of “So Much to Say…”
Day 21: Choosing Life (III)
Day 22: Hospital Bags
Day 23: An Example of Being Thankful in the Midst of Crisis
Day 24: Marital Impact
Day 25: Mental Health
Day 26: A Re-Blogged Guest Post
Day 27: Inspiration Pr0n
Day 28: Autism Sleep Issues
Day 29: Blogger Spotlight on Cammie of “Beyond Pearls”
Day 30: Food Issues
Day 31: Vaccines and Autism

7 Quick Takes: The “Wow… I’m a Student Again” Edition

7 Quick Takes

— 1 —

Duuuuuuude… The website for the local community college isn’t incredibly user-friendly so I didn’t know that I could have just walked in, filled out a non-degree seeking student application for classes, and been on my way. Instead, I did the community college application and found out that it would possibly take two weeks for them to review it. Then, I got an email from the college telling me that they got my application and it could take up to five days to review… and was notified 24 hours later that I was accepted.

I then had to jump through the enrollment hoops and had to go down in person and talk them into taking the block off my account so I could enroll in classes. (The block was on my account until I did the new student orientation stuff.) They made an exception for me this quarter but if I continue taking classes, I have to do the group advising session.

So… I start Monday.

— 2 —

My classes. I’m taking a class on Excel/Access and one on practical accounting. Both are areas where I know how to do some of it already but it’s been years since I’ve done things with it. I’m really hoping that a lot of it will come back to me pretty quickly. One of them is online so I’ll only be on campus 3 days a week and the campus isn’t far away.

— 3 —

My study/writing space. As I will be having to study and do homework while Daniel is in school and after he goes to bed, I have been making a nice spot for myself. I have my desk cleaned off, my pens/pencils sorted, a desk lamp, a cat bed, and a nice grey cat to occupy said cat bed. (Homer has volunteered to be my stress ball. He is so helpful. 🙂 )

— 4 —

I’m doing it and so should you. Even with taking the two classes, I’ll still be participating in Write 31 Days next month. Having to structure my schedule will be a good thing and I might be more efficient at writing daily if I have to plan around various things.

Come do Write 31 Days with me!

— 5 —

Useful infographic. Upworthy posted this infographic on Andrew Wakefield and the damage his falsified study has wrought. Feel free to share it and a tinfoil hat with your favorite anti-vaxxer.

— 6 —

I need this. Do you tap your fingers while waiting or do similar movements? Someone started a Kickstarter for a fidget toy with 6 different surfaces. They were hoping to raise $15,000 and have raised $4.3 million. I’m hoping the gross excess of funds means they can get it on the market faster!

— 7 —

Football funny. The calling of the run of the streaker at the game between the 49’ers and the LA Lambs was probably the best football thing I’ve seen all year. I think he also got more yardage than the Lambs did.

For more Quick Takes, visit Kelly at This Ain’t The Lyceum.