Cerebral Palsy — 5 Minutes for Special Needs

Cerebral Palsy



                               

When Zoe was little I spent a lot of time thinking  ( and writing) about about how different she was. Then she grew, and through her grade school years blossomed with the encouragement to try and do her best as I made sure she was always included, and treated just like everyone else.

Zoe will be starting sixth grade next year, and growing into who she is meant to be. She is quick to laugh and smile, full of pre-teen sass.

I have always maintained my own set of rules for Mothering Zoe. Many of them involve not making a big deal about her disabilities, within our family .. even in small ways. [click to continue]



                               

This post may contain affiliate links. When you use them, you support this site. Thank you!
See our Disclosure Policy for details.

How to Hold it Together When the World Falls Apart

Hi you guys!

This is basically my week again…only different surgery on the stomach…I’ll update you later…

 

****************************************************************************

 

 

I get tired–the kind of tired that makes your bones ache.

Sometimes, I get grumpy too.

Hey, don’t we all?

In this ever-winding road of special needs parenting, I find myself often in a place of worry—of frustration.

Nothing seems to go right. Ever.

If there were 2 possibilities–say, vanilla or chocolate–Jack would somehow end up being banana. Even if there was no possible, plausible way for that to happen, it would.

So, you would think that I would be surprised when weirdness happens.

Read the full article →
 


                                       

Testing….

Hi there! Remember me?

(don’t answer that…I’m beginning to feel a foreigner in my own land!)

 

So, here’s the current score. School District: 5, Jack: 3.

It’s looking rough out there.

His IEP was completed a few weeks ago. Because he turned 6, he has to be “transitioned” from the developmental delay label to something else. So you know what that means?

Testing.

Lots, and Lots, And LOTS of testing.

We’ve had 3 speech tests, an intelligence test, and today we’re going to the psychologist to have another battery of tests. Add to it physical and occupational therapy evaluations, and you have…

One.

Read the full article →
 


                                       

Hospital Homebound

School.

It’s happening around here. Some of the counties near where we live have already returned to recess, brown bag lunch, and smiling teachers. We…start Monday.

Well, my daughter starts Monday. My friend’s children start Monday.

Jack. Not so much.

See, we qualified for Hospital Homebound (HH). Basically, this is a school within a school. It has its own principal, teachers, guidance counselors, etc. Three times a week a teacher comes to my house and hangs out with Jack. Speech therapy and Physical therapy will visit him at home as well. However, it’s under the confines of the MotherSchool, which is the elementary that we are zoned for.

Read the full article →
 


                                       

The Bubble Bursts…

Sometimes, I lose my words.

Like someone popped my beautiful bubble that I worked so hard to get right.

Or I feel like the sky is closing in on me.

Actually, I feel like I’m the kid with the black cloud that only rains on me.

(Pity party, table for 1?)

So many times, on this journey, I have these huge highs….that are followed by the lowest lows. I fight hard, I play hard, I love hard…and then I get kicked in the teeth.

 

YAY: the insurance approved the wheelchair!

BOO: they’re not sure when we can actually have it (4-12 weeks is the estimate).

Read the full article →
 


                                       

Labels

 

 

Jack met with the developmental psychologist on Tuesday for a few hours. We have been noticing some hard-core aggression along with some other really disturbing “new habits” that have come up in the past few months (for example, he’s taken to not sleeping again, and he’s picked all the nails off his fingers and toes). It was time.

She is amazing.

The office is amazing.

They have an education advocate who comes in to introduce herself and she calls you to make sure you’re getting everything you should from the county (school wise). I nearly wept with joy.

After two hours of pouring our hearts out and her seeing Jack at his absolute worst, I felt like we were actually in the right place, with the right provider for Jack.

Read the full article →
 


                                       

Be Prepared….

Living in Florida, I know a bit about natural disasters. Like when, in 2005, 3 hurricanes hit us in 6 weeks. I got a new roof twice.

Back then, I only had the Girl Child, who was 5. She was self-sufficient, opinionated, and stubborn–but she knew when Momma said, “Get in the bathroom and cover up with a mattress, ” I meant business!

Fast forward to now. Jack is part of us. He requires extra preparation and forethought.

Did you know…that there are a TON of states that could, at any time, be hit by a hurricane? Did you know that September is the month when hurricanes most likely occur?

Read the full article →
 


                                       

Fatherhood, redefined…

My life changed drastically the day we adopted Jack. I just didn’t know how much it was changed.

We struggled to have our oldest child. She was born early, but healthy. Shortly after her birth, I had a large lump removed from my breast. 2 months after that, I had a complete hysterectomy. We knew we would never have another biological child, and we weren’t even sure we wanted to adopt at that point.

However, when J turned 5, she started questioning us about babies and why she couldn’t have a sibling. Our hearts began to change, and by the time J was 6 and a half, we had prayed enough, thought enough, and felt strongly enough to complete a home study and begin the adoption process.

Read the full article →
 


                                       

Moms Gone Mad!

I have tried…

When Jack was taking therapy a million hours a week, I would sit in the waiting room and take in the “sights” and sounds around me (seriously, people, leggings are NOT pants!). So many times my heart broke when I would hear another parent, under the guise of “advocacy,” just pick apart either physicians, nurses, or therapists. Perhaps some of this is because I am a nurse (BSN, RN–MSN 2013)? Perhaps some of it is because I am careful about what I say about other people?

When I was teaching nursing assistants at my last job, I would explain to them that they did not need to enter the field and tell other nursing assistants what was wrong in that specific facility.

Read the full article →
 


                                       

Special Needs Sports

When Jack was first diagnosed, and we still felt like the world was ending, my husband was devastated. Not because of the diagnosis, but because of what Jack may not ever be able to do—play football, or baseball, or any of those “guy” things. Personally, I believe that deep down, there’s this innate thing that guys have–I think they daydream of dirt and sweat and the smell of sweaty socks.

Last week, I discovered that my local (well, it’s not in my town, but the next town over) recreation department has special needs sports–dancing, cheerleading, swimming, and baseball.

My heart nearly stopped dead.

Read the full article →