Ask the Parents — 5 Minutes for Special Needs

Ask the Parents



                               

Hi you guys!

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

 

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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. I’m not. Not anymore.

I think I’ve begun having out of body experiences. Really. It’s like, I hear what people are saying and I’m standing there looking at myself shake my head and smile, while inwardly, all I really want to do is curl up in bed and cry.

 

My Mother: “What is going to happen? Who will keep Big Child? Shall I bring a casserole?”

My best friend: “What is this kid going to do NEXT?”

My husband: “I probably have to work, so…”

 

 

Jack’s stoma ate his feeding tube. Literally. As in, he is having surgery to remove his feeding tube because no one can get it out manually.

I’m not freaking out. I figure, it is what it is. My child is unique. Very unique.

I get asked all the time…”How do you do it?”

I’m telling you…out of body experience is the way to go. But you can’t tell non-special needs parents that without them wanting to have you committed. My answer is usually the same to everyone—I do what I have to do. You take your kid to soccer and to playdates…I take mine to doctors offices and surgery.

What do you do to relieve stress? How do you manage when the chips are down?

(as I write, I have a cup of coffee, 3 Hershey kisses, and I am really contemplating going to the store for gelato!)



                               

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Antibiotics: How Do YOU Roll?

My Sick Little Man

Need a little help here, PLEASE: My Big Little Man (who is smaller by 5 lbs now than My Little Man) got that back-to-school cold going around. For us, that means an imminent sinus infection as his compressed sinus cavities — a trait common to those with Down syndrome — makes him prone to this particular affliction. In addition, he’s inherited my lousy sinuses, which I got from my mom, so he’s got a double whammy! This is his thing!

So there I was at my VERY trusted Doc on Tuesday for a preemptive visit. My Big Little Man was already congested to the point of no in- or out-going passage in either nostril — read: no drip, no air… just STUCK.

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 →
 


                                       

Deep Breaths

How are YOU?

I hate the beginning of school. Invariably, it brings an onslaught of paperwork, sniffles, and children who are grumpy. It takes a good month for Jack to pull it together.

So what do we do?

Run away?  Hide?

I don’t know what the answer is. I know that I am struggling. He is not happy. He is super grumpy. He cries when we drop his sister off at school. He doesn’t want to have speech or his teacher visit. I’ve tried to offer bribes. I’ve tried to read an extra story or play another game…yet, nothing is soothing the soul.

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 →
 


                                       

How to Save a Life

“And I would have stayed up with you all night…” (The Fray)

Funny…my nights are filled with constant coughing.

Wet washcloths to the forehead.

Pulse oximetry.

Puking of mucus.

Pedialyte.

Medication.

Pillows.

 

 

My little dude is not doing so hot.

His lungs aren’t doing their job very well.

There’s Lysol, medications, inhalers, nebulizers, steroids, antibiotics… and yet, it’s not all working too well.

When you read this, I am not sure if we’ll be home or at the hospital.

I don’t want to be at the hospital… it scares me.

I don’t want him to go in with one thing and contract something else.

Read the full article →
 


                                       

Special Schools

This week has been one of those weeks where my emotions have gone from elation to fear to peace—and then back again!

It is time for Jack to head to school. In the past, I was determined that the only way he was going to do school was with me by his side (meaning: home school). I am, however, beginning to understand that there needs to be a break between my son and I.

His power (both physical and emotional) is getting stronger…

 

So, I looked in to schools. The public school near us would be OK, but he would be labeled as “Other Health Impaired” and a list of other things…meaning he would only hang out with the other kids for recess (which he can’t really do much of) and PE (same thing).

Read the full article →
 


                                       

Weddings (and other such events)

Tomorrow my brother is getting married.

In a quiet, small gathering.

On a boat.

At Disney World.

 

Now, while most people think this sounds romantic and lovely, I am a nervous wreck. My brother loves my son no matter what; however, if he decides to melt down or scream or narrate the entire event, I fear he’ll never speak to me again!

So, to make myself feel better, I tried to think of all the ‘What If’ moments that could happen, so that when something minor happens, I won’t freak out. It doesn’t make any sense to anyone but me, but that is OK.

Read the full article →
 


                                       

The Working Special Needs Mom…

So, how does one do it? Work and be Mom of the Medically Fragile?

I need to know.

I have a job interview. For a real, big girl job. In my field. At a large hospital. In a position that I, a few years ago, could have only dreamed about.

I don’t really want to work full time. But, the bills accrued by having a SN kid…

astronomical.

(I really can’t expect my husband to carry all that on himself)

 

I’m torn in so many ways. On one hand, I want to work and make the world of nursing a better place.

Read the full article →
 


                                       

Message for ALL Mom’s.. LOVE your kids, as if they were dying..

My day had started like any other, I was up at 5 packing lunches and backpacks, while trying to gulp down some coffee. I had an appointment at the office later, so I spent a few minutes standing in front of my closet perplexed and sighing. I looked in the mirror, briefly noting the major damage 40 plus years and nightly interrupted sleep can bring.  Finally, by 7 am, we were all dressed and ready, so we hit the road to drop Zoe’s big sister O, at her school first.

Later, it was just Zoe and I in the car. The sun was streaming through the car windows, the radio was on and I was trying to make Zoe laugh.. 

Read the full article →