200th Follower Guest Post

Just a little under two weeks ago, I realized I was at 199 followers -- and was more than a little excited to see who the 200th follower would be.  I truly believe, for the record, that I have the most amazing followers, many of whom I am lucky enough to have grown to be friends with, so the introduction of a new potential 'friend' was very exciting for me.

Anyway, I decided it would be cool to have the 200th follower write a guest post, you know, kind of a 'get to know you' type post that shows us what SPD (or special needs of any kind) looks like for that person -- and gives all of us a better look at how wide spread sensory issues are. 

So, are you curious who the 200th follower was?

It was Nancy Brown who blogs at Prematurity With Love about her adorable son, Tyler (pictured above, and really, how cute is that kid!). Tyler was a preemie, has sensory issues, Cerebral Palsy as well as other challenges, but that doesn't stop him!  Nancy is a dedicated mom and has worked, like all of us, to understand and accommodate her child's needs.


Here's Nancy's story:

My name is Nancy. I am a mom to a 25 weeker who is now almost 5! Yep! My one pound 11 oz kiddo is almost 5. My son is Tyler. His early arrival has brought a MILLION things that we never expected when we found out we would be parents.

Tyler has sensory issues. Though they are NOTHING like they use to be, we have gone through a challenge in figuring out what we can do and what we can't do. We have several things that have made it so we can't do things that we would love to share with him but can't.

Tyler also has Cerebral Palsy, hydrocephalus and Low vision. All of these things play a part in him and his sensory issues and how we deal with them. We are learning new things every single day. Sometimes what works on Monday won't work on Friday, but it is a learning process.

Because of Tyler's hydrocephalus he has had 7 brain surgeries including 2 total skull reconstructions. This has given him a scar that is ear to ear and zig zagged. He hates having his head touched. At first we just thought that maybe he was afraid or had memories ( he was really little) of something going on or someone hurting him. Then I sat in a conference with a mom that has a verbal kiddo that had the same condition ( the craniosynostosis that required the reconstructions) and she said he reported a strange feeling when his head was touched. Like tingles. That was our first indication that maybe Tyler wasn't feeling things the same way we were. Or that he wasn't processing what we were.

The next thing we noticed was he didn't sleep like most did. We attributed it to his low vision but have since changed our minds and gone through a ton of testing and most has been chalked up to his sensory inputs. If he doesn't have enough movement throughout the day he sleeps worse. If he has too much going on around him he gets to stressed and doesn't sleep. He doesn't nap and if we give him a movie to watch he never falls asleep because he is up processing what is going on. In order to give him the rest he needs he gets sedation medication but we keep a routine and we watch what is going on for him throughout the day and adjust our activities according to what we do.

Ty can't handle loud noises. His loud noise issue compounds his meltdowns. A lot of the time he can't see what is making the loud noise ( like why his stuffed animal is making the noise) so we tend to really research what goes on in our house. There is no talking things and we really really talk to him when a loud noise is anticipated. In the last year this has really helped him. He can stand outside when the lawn mower is on, he can stay in the swimming pool when others are yelling and he can even be in a room with loud and rowdy kids without a meltdown.

When Ty comes home from school he has to have his own time. Generally coming home he has had so much overload and he has to have his space. Generally a movie and lunch will work and he can go about having a good day. Sometimes, he doesn't get enough interaction ( yep.. my fault. I have to be the wife and house keeper) that he has meltdown after meltdown. Especially when he can't wait to have his way. If he says we are all done we are all done and he can't process a No or a just a minute. It is too hard for him.

We are slowly learning that we can fix some of these things. Being non-verbal sometimes makes the situation harder. But we are slowly fixing behaviors when he does get upset. ( He spits and that can be fixed) but we realize the meltdown won't be fixed unless we change what leads UP to the meltdown.

Many outside people think we cater to him and we are spoiling him, but we aren't. We are trying to allow him to express himself in the only way that we can while still doing what we need to do. Sometimes we will decline a family party or miss an activity. We don't want to be judged as being spoiled or snotty. We just know our child. Unless accommodations get made we sometimes have to do that.

Our preemie-hood and our other issues overlap. They do cause more than the "average" kiddo. But we can do it. There is others out there that can give us the hope and ideas that we need to make our days a little more meltdown-free and allow Tyler to just be his happy self.


Thank you Nancy for sharing your story!

Maybe I'll do this again -- but I hate to wait for # 300 -- Anyone out there have a unique story they want to tell?  Email me.  :)

Don't forget to be 'mom or dad' this weekend and have some fun in the sun!


Preemie Miracle said...

Thank you for letting us be a guest blogger. We love your blog and hope we can continue to make progress... Thanks for all the suggestions

Stacey,momof 2 said...

I enjoyed reading this post!

Heather B said...

Welcome Nancy! I enjoyed hearing about you and your son. I hope that things continue to look up for you:)