The Secrets of a Special Needs Christmas

Christmas

Magical for children of all ages, or it really should be.

But the holidays for a family with a child with special needs is STRESSFUL!

It's not the busyness of having friends and family over or making bigger meals.

It's helping your child have a special experience and just as magical a season as other kids.

That may not seem like a tall order, but it can be.

Many families ask for advice from "seasoned" parents or carers and ask what kinds of things to get.

It's nice to have a community of people who have gone through what you are newly in the trenches of. 

It can be very depressing to watch the excitement of children your own child's age or stage and see your own not be able to do the same.

Unfortunately we all compare.

This is our 2nd Tubie Christmas...and we did it better than our first :-).

We were so lost and scared last year, new adaptive equipment, 

just coming from a very stressful hospital stay, 

a baby still NPO and on bolus feeds throughout the day with continuous overnight trying to "catch up", 

and me still off work to help us adapt to our "New Normal".

Some of the items we typically bought for our kids or others did were not suitable for a child who couldn't eat by mouth, 

Clothes that he could wear before were now a pain to work around his feedings with.

All the special foods we usually ate he couldn't even taste and forget any special candies or cookies!

(2016)

This year he was more capable to eat the special foods, 

enjoy tastes of cookies and take guided sips of holiday drinks.

He eats during the day now and only has a continuous feed overnight so we could get him any clothing we wanted, 

and physically he is catching up so he can enjoy "normal" toys for kids his age.

We still needed to change the way we do stockings and keep special candies and treats out of it, but got him more little toys and smaller non-edible items.

I will share our ideas, and maybe we can all compile them to make it easier for others.

• Cars/Trains
• Animals
• Balls
• Flashlights-with multicolor capability or shapes
• Blocks
• Bubble machines
• Bath toys
• Noisemakers
• Movies
• Music
• Books...like "My Belly Has Two Buttons" By Meikele Lee <3 
• Adaptive clothes for tube/device access
• Sleepers
• Tablet/Ipad
• Ornaments
• Blankets
• Plush dolls
• Memory games
• Flashcards
• Saftey belts
• Stroller
• Moby wrap/Ergo/other carriers
• Car Seat
• Hat/coat/gloves
• Shoes/Boots

Items for PT/OT at home...

• Small Trampoline
• Adaptive cups, silverware, straws
• Foam wedge for sleeping
• Chewies/Teething toys
• Pacifiers
• Bean bags
• Compression wear
• Weighted blankets
• Nook Brushes
• Z-vibe/or in a pinch an electric toothbrush
• Bath equipment
• Play mats or foam mats
• Jonny Jumper
• Walkers
• Noise canceling headphones for SPD kids

It does get easier,

Give yourself some grace and learn to find the magic in what you can do now. 

 Merry Christmas Special Families!!

"How does she do it All?"

I constantly have people in my life who ask this question

"How do you do it?"

"How do you..."

• Work two jobs
• Home school
• Keep house
• Cook for/feed kids with disphagia
• Keep up with medical/Therapy appointments
• Get enough sleep
• Not fall apart

Here's my secret...I DON'T

I am just an exhausted mama trying her best to keep our family fed, housed, healthy and as happy as possible.

It's no magic formula and nothing that any other parent wouldn't do if needed.

I am not more strong, creative or resourceful than anyone.

I try my best every day to push through and be the best Mom, Wife, Employee that I can.

I fail on a regular basis to...

• Keep my house clean
• Hold my tongue
• Get enough sleep
• Spend enough time with my family
• Cook at home every day...Salon nights I use whatever tips I make to bring home food :-)
• I miss appointments when I forget to put them on my phone calendar

This life is hard

There's nothing glamorous about working two jobs, and even though one of them I do hair and have to look "put together". 

My other job I look like a crazy bag lady because comfort is #1 on a 10 hour overnight shift.

When I get home, no matter which job; it's to a chorus of "I'm hungry, what's for breakfast/dinner?"

I try my best to get my stuff done and spend time with my kids and husband, but sleep has to happen. 
So for the last two years my girls have jumped into bed with me and they take turns laying close to me while the other one holds my hand. 
They watch an educational show on the weekdays and on weekends a movie or kids show while I sleep. 

During the day they may only be in there a few minutes to get cuddles in or in the evening before my job starts they may fall asleep for the night.  

I pick up 1 or 2 kids every Thursday morning after working 10 hours and take them to one of 3 therapies...Physical, speech, or Occupational. And usually don't get done until close to 12pm. Then a quick nap afterwards or take 2 to ATA and then nap. 

My Friday "Day off" is ideally spent cleaning and getting laundry done, but work trainings or meetings tend to happen those days as well as the frequent doctor's appointment for 1-3 kids.

Homeschooling is fit into our day either before I nap or after, and sometimes after dinner.

I fall apart pretty frequently and hopefully it's in private, but more often than not its in the midst of whatever is difficult or stressful. 

I raise my voice more than I ought too when it feels like no one is listening to me.

I hope people can appreciate my honesty, and take heart that as I tell my kids "practice makes progress", and I feel that I am daily practicing to do and be better than I was yesterday. I may fail, but at least I try.

I look forward to one day having a "normal" schedule, whatever that my look like. 

I am not writing this for sympathy, I love my family and am thankful for my jobs.

But you never know from the outside looking in that the ones who look like they have everything under control are just juggling the chaos.

I am not superwoman, I am just "mom".

The best, hardest, most rewarding title I have ever had.

I hope that parts of this last couple years my kids can forget, but other parts I hope they remember fondly and can see how hard we worked to give them the best life we can.

Heading to ATA with Nene and Sanna