Field Trip Chaperone: The Good, the Bad, and the Ugly

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One of the perks of having Leah & Joey in the same homeroom class is that when they go on field trips, they’re together so if I get the opportunity to be the chaperone, I go for it! Yesterday I spent the day (freezing my rear off in 50 degree below normal for May chilly weather) but I got to witness first hand not only the love Leah has for Joey but the love his entire class has for him as well.

As we hiked all over our local YMCA’ s camp, I watched Joey and his peers. Although Joey didn’t participate in all the activities, he still watched and took things in on his own pace.

Joey didn’t pay attention to what the camp counselors were saying or collect the same scientific data his fellow 4th grade peers were taking on their clipboards they were carrying around. But he watched his peers work and measure things and even noticed things that the other children down notice like the squirrel running through  woods or the swan swimming across the lake.

As we were walking back to the picnic shelter for lunch, I watched and could feel my heart swelling with love as Leah walked with her brother.

And then today I repeated the whole chaperone fun all over again, this time with Aiden’s class and once again, I froze and left the camp this afternoon feeling like a Popsicle! But there’s one thing I cherish about being a stay at home mom, being able to go on the field trips and volunteer at the Joey, Leah, and Aiden’s school, even if I do freeze and have to go above and beyond the call of chaperone duty occasionally, it’s worth every single second!


And I’ll leave you with just a few words of advice for any parent who’s going to be going on an elementary school aged field trip to an outdoors camp with their child and class. Trust me, if you want to have a successful and hopefully stress free field trip you might want this advice, hahaha!

10 Things About Being A Field Trip Chaperone You’ll Kick Yourself for Not Knowing

  1. If it’s cold outside, not only dress your kid in layers, dress yourself in layers as well.
  2. Bug spray… you may not be able to spray the other kids down, but golly, spray your kid down!
  3. Sunscreen, enough said…
  4. Bring Kleenex, I had more kids ask me for a tissue that my three kids have asked me in a year! But whatever you do, don’t just shove some extras in your pocket and call it a day. You may end up with that one kid in your group who won’t take even a clean tissue from your pocket, they must SEE it come out of the package or it’s not considered clean…
  5. Bring extra band-aids, even though there should be a first aid kit somewhere where you’re at, whoever has the boo-boo is going to want that darn band-aid INSTANTLY. It’s like a life or death situation!
  6. Bring diaper wipes, if there’s no sinks nearby and one of the kids stick their hand in the mud, you’re gonna want that wet wipe ASAP or the mud will end up on your sleeve!
  7. An extra bottle of water for the kid that gets sand in their eyes and you need to wash their eyes out. Again, it’s a life or death situation just like with the band-aids!
  8. Bring a trash bag to collect the dirty Kleenex, band-aid wrappers, and diaper wipes in. Trust me on that one!
  9. Bring a second bag to collect all the cool rocks, sticks, and whatever else your group of kids collect or else half of it ends up in your pockets.
  10. And lastly bring a backpack to put all these above items in…

 

What an amazing read! The Lucky Few 

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Whenever a new book published a fellow Down syndrome parent is released, I try to buy it. You should see my bookcase, I have my own little DS library! When I read online about The Lucky Few, I knew I just had to add it to my collection!

Adoption is such an amazing thing, it gives a pregnant mom a chance to give their unborn baby a better chance at life. It gives a parentless child a family. It gives adults the amazing opportunity to become parents. Adoption is beautiful!

As soon as the mailman delivered my copy of The Lucky Few, I opened my package instantly and plopped myself down on the couch to start reading it!

I admire the author, Heather Aviz’s courage to share her faith and openness to God during her and her husband’s adoption journey of their three beautiful children in her book!

In my first day reading it, I made it over halfway through the book! It’s one of those books you literally can’t put down! It was like I was with Heather and her husband, Josh during their journey. Especially when their daughter went for her open heart surgery. It felt like I was walking the hospital hallways with them!

Heather’s candid emotions are something as a Down syndrome mom I can totally relate to! Even though Joey has never had open heart surgery, he’s had two major bowel operations in which he spent several hours in the operating room and I spent nervously waiting for updates on my baby during this hours. They can truly be the longest hours of a parent’s life…

I could feel the love radiating from the book as I read it, not only from Heather’s point of view but you could also feel the love that Heather’s husband, Josh not only has for their three beautiful children, but also the love and support he has for Heather as well. What an amazing family!

It only took me a grand total of two days to read The Lucky Few, I just couldn’t put the book down once I started reading! I don’t want to give any details away for folks who haven’t read it yet but it is a must read and a great addition to your bookshelf! You can order it through Amazon or if you’re at Target, you can buy it there as well. I hope you enjoy it as much as I did!

***if you’re on Instagram, you can actually follow the Avis family and their many adventures on macymakesmyday.

 Our Very Own Kangaroo- The Sunny Trampoline

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Each child that has severe sensory needs had their own outlet. One of Joey’s main ways to get his energy out is through vestibular input aka movement. He does this mainly by jump in on his trampoline.

Last year, his beloved trampoline broke so before I could buy him a new one, he started jumping on my recliner chair which of course resulted in his breaking the springs in the seat. Thankfully Grandma Julie came to the rescue and ordered him a new one off of Amazon.

This time we’re trying the Sunny Health & Fitness 40″ Foldable Trampoline with Bar. It has a 1 year manufacturer warranty so if it breaks, hopefully we can replace any broken parts. So far since November, it has withstood Joey’s very rough, and hard jumping which he does for at least 2-4 hours a day! Joey starts jumping as early as 5am some days!

The Sunny Trampoline also comes with the handlebar which is removable and a storage bag. It has a 40 inch diameter and can hold up to 250 pounds! It does easily fold although we keep Joey’s out 24/7.

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Without this trampoline, I have no idea how Joey would get all his energy out, our lives (and my furniture depend on it!). I highly recommend this one for any sensory kiddo who seeks that vestibular movement and needs a way to get their energy out like Jojoe does!

A Mom’s Discernment

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I’ve decided to add some faith-based posts into my blog. Being a proud Catholic mom, I rely heavily on prayer so I decided it’s time that I share some of my spiritual thoughts with my readers.

As part of my faith journey, I learned more in-depth about Discernment in the Catholic faith. As a special needs mom, I often feel like my life is spiraling out of control (as do most typical moms do at times) but for me, it’s the sorry about the next time Joey will end up in the hospital, if he will ever speak, will he ever eat solid food, and I can forget the will he ever poop on the potty?!

Also as a mom, I really don’t take nearly enough time for myself or even with my husband without children present. I’ve lost touch with a lot of reality and this is something that must change…

After getting as sick as I was for a few months over the winter and going through my trials and tribulations, I had started to lose touch with God. The last two months, I’ve reopened my eyes to God and let him back into my life. It’s been kind of like my own resurrection. It wasn’t that I stopped believing, if anything, I stopped believing in myself…

It was totally fitting that I learned about Discernment today at church and even jotted down some notes I thought I might share with my readers.

  • Tell God what it is a desire and what I fear. For me, the fear of the unknown is something I truly struggle with. I fear Joey getting sick and ending up in the hospital. As for what I desire, I desire for Joey to stay healthy and for him to talk. I desire for time alone by myself and also with my husband. I desire inner peace.
  • I need to be alone in the presence of God. This I huge, this goes back to what I mentioned before about nothing having time to myself. I could really use some alone time to pray even of its at night before bed for a few minutes.
  • Start with what I know before entering into the unknown. Wait for God’s guidance. I’m known for making rash, super quick decisions. I have to remember that God can help guide me. I must work on this…
  • Know and believe that God speaks through us through the wisdom of others. Through church, I have met some of the most faith filled, amazing people who I am honored to call them my friends. Their wisdom and support has meant more to me than I can ever put into words.
  • Let God speak to me and pay attention when he does so.  He can speak through the words of others, through animals, through your own feelings & the feelings of others, other people & their actions, through joy & peace, and even through memories. There are times I ask God for a sign, even if it’s as simple as a bird in our yard, an extra bright star in the night sky, or a butterfly. Perhaps it’s through the homeless person on the street corner or the elderly lady whose smile makes your day. Or maybe it was the person who paid to coffee in line at Dunkin Donuts?
  • And I need to trust that God has a plan for me. Again, this goes into my fear of the unknown.  I truly must trust in God and His plan for me and my family more than I give Him credit for. The future scares the heck out of me, one huge example: what will happen to Joey when I’m gone?
  • I don’t need to scream and yell at God for His attention. He hears me just fine even when I don’t think he does.  Whenever Joey is sick and in the hospital suffering, there’s been times I’ve truly been angry with God and asked him why. He may not answer me but I must trust in him.
  • I must ask for God’s guidance and pray to do God’s will. This is again something I need to work on, I need to take time to stop and say, “ok God, what should I do? Where should I go?”
  • Sometimes people need to have their death on the cross and their own resurrection. I think this happens to me through my struggle with anxiety and depression. Maybe my death on the cross was during my prenatal diagnosis with Joey when I was so depressed and felt so alone. And the resurrection was when Joey was born and I realized things weren’t going to be so bad.

I know my Discernment is going to be an ongoing project and something I will always need to pray and mediate on. I’m so excited for the future and to have learned about this be part of my faith to help open my eyes more and to help me be a better parent and wife.

 

Philippians 1:9-10

And this I pray, that your love may abound still more and more in real knowledge and all discernment, so that you may approve the things that are excellent, in order to be sincere and blameless until the day of Christ;

Buried Treasure Comes in Odd Forms, The Long Lost Helmet

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As I’m deep cleaning our basement, I’m realizing the amount of junk one family can acquire over the years…

But in all the junk, I’m finding some amazing treasures! Some of these treasure finds I’m keeping, some I’m selling, and some donating or just throwing away. I’ve even gone as far as ordering a dumpster for next week so I can really clean house!

In all the things I’ve found, one really stood out as a true oddity but memorable treasure: the mold from Joey’s head and the helmet that he wore for 18 long weeks as a baby to correct Plagiocephaly and Brachycephaly! I mean, who else can find a mold of their own child’s head along with his old helmet laying around in their basement?! This mom can!

Joey had to wear the helmet for 23 hours a day. The only time it came off was when it was time do his bath and for us to wipe down the inside of it with rubbing alcohol. I had to drive him once a week 40 minutes each way to have a helmet adjusted. By the end of the 18 weeks, I could do that drive with my eyes closed!

But those 18 long weeks were so worth the wait in the end when he went from having a completely lopsided head to a perfectly round head. Just look at these before and after pictures!

Looking back at these pictures and remembering all those long, stressful days with Joey and the helmet 10 years ago. I realize now how grateful I am that we took the time and had his head corrected. I can’t imagine Joey now being 11 years old and have a lopsided head!

As I continue my project of deep cleaning our basement, I wonder what other hidden treasures and memories I may come across…

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Best Gifts for a Sensory Seeking Child

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One of the hardest things for me as Joey’s mom is finding new and different toys he will play with especially around his birthday or Christmas. Yes, he sometimes (like 1-2 times per week) will play with a matchbox car and occasionally with an action figure, but he’s more content with more sensory related toys and activities that keep his brain active and stimulated. I mean, what does Santa bring a kid who doesn’t like playing with “regular toys”?!

This is a time that I truly have to rack my brain and think like Joey. What would he like to get from Santa or the Easter Bunny or for his birthday? And I know I’m not the only parent out there with this predicament so I thought it would be fun to compile a list of toys that Joey and other sensory seeking children may enjoy to help fellow parents and loved ones find the perfect gifts for the child. I’ve done my best to sort the toys into different categories because, let’s face it, each sensory seeking child craves different types of stimuli. I’ve listed items that your visual, tactile,  Vestibular/Proprioceptive (movement), auditory, or oral seeking child might like.

**As I find more gift ideas to add to this post, I will add them.

Visual Seekers

Adorox Liquid Bubble Drop Motion Wheel Zig Zag Desk Toy (Bubbler) (we have multiple of these floating around our house! We can never have enough of these!)

60 Rainbow Counting Bears with Color Matching Sorting Cups Set

Tranquil Teddy Bear – Occupational Therapy Toy – 12″ Plush Stuffed Animal with Light-Up Glitter Ball  (Santa got this for Joey and he LOVES it! He tucks it in next to himself every night before bed!)

Ocean Relax Projector  (Santa also got Joey this and we have it in our playroom, it’s REALLY neat! I enjoy sitting and watching it as well!)

Toysmith 37-Piece Marble Run (Santa got Jojoe this last Christmas)

Quercetti Kaleido Gears – 55 Piece Building Set with 3 Different Sized Gears 

Original Hoberman Sphere

360 Degree Rotating Cosmos Star Moon sky Projector

Mindscope Twister Tracks Trax RollBot Neon Glow in the Dark 241 Piece Flexible Railway Set With Light Up LED Motorized Sphere/Ball & 12′ Feet of Track

Little People Wheelies Stand ‘n Play Rampway (we have this and Jojoe will sit and play with this and his cars)

Tot Tube Playset – Toy Car and Ball Tunnel Ramp Race Track

Gazillion Bubble Hurricane Machine (we’ve gone through multiple bubble makers and this one makes the most bubbles by far!)

Penguin Race 2 (Santa got this for Joey and he LOVES it! It’s super cute!)

Tactile Seekers

Sensory Water Beads  (I have a pack of these to try once it warms up a bit more and we can fill our kiddie pool with them!)

FIDGET TOY (Package of 8)

Duc Elite Stress Relief Balls

Therapy Putty Special Kit, 2-oz. each, Red, Yellow, Green and Blue (Jojoe uses this in occupational therapy at school to help build up his hand strength!)

Edushape Sensory See Me Balls

Set of 3! Tangle Jr. Original Fidget Toy (there was a few of these in Joey’s Easter basket!)

Rainbow Rice Colored Rice Mix Non Toxic Sensory Tables, Neon, 5 lb.

Novelty Pin Point Impressions Metal Pin Art (This could have also gone in the visual seekers category as well. Joey has one these and will sit and watch the pins move as he flips it over)

Vestibular/Proprioceptive (movement) Seekers

Skil-Care 5′ x 5′ Crash Pad   (I wish we had the space for one of these in Joey’s room!)

Sunny Health & Fitness 40″ Foldable Trampoline with Bar (We have this one and Jojoe LOVES to jump! He jumps on his trampoline 24/7, it is one of the main ways Joey gets out his energy, especially when he’s over stimulated!)

Super Spinner Swing

Transformer Sensory Sack (Joey LOVES his sensory sack!)

 

Gamecraft Safety Guard Scooters (Jojoe has a scooter board and he rides it on our driveway while his siblings ride their bikes)

Hippity Hop 55cm Including Free Foot Pump, For Children Ages 7 & Up

Hanging Swing Chair for Kids

Exercise Ball (Joey constantly sits on his exercise ball and bounces while watching his iPad! He also loves to sit on his and stare out the window watching cars drive by)

My First Flybar – Red Foam Pogo Jumper For Kids- Supports up to 250lbs

Auditory Seekers

Hohner Kids MP400 – 16″ Plastic Rainbomaker (we have several of these as well around our house that Joey plays with)

Zenit Audio Egg Shaker – Premium Professional Wood Egg Shakers and Musical Instruments

LilGadgets Untangled Pro Premium Children’s Wireless Bluetooth Headphones with SharePort – Purple (headphones in our house are a MUST! As much as Joey listens to music on his iPad, it can get very noisy so a good pair of headphones can be a lifesaver!)


Oral Seekers

MyBoo Autism/Sensory/Teething Chewable Oval Bead and Droplet Pendant Necklace

Chewy Tubes Super Chew Knobby, 2 Pack (a MUST for an oral motor kiddo!)

Chewelry Quad-Blockz Oral Sensory Stimulation Tool Block Piece Chew Necklace

Munchables Chewelry Dog Tags

Chewable Jewelry Large Coil Necklace

Happy Easter!

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Today Joey had a pretty cool milestone that meant the world to me. As a special needs mom, the littlest thing that your child can do, can be the most amazing thing ever! Especially when they participate and do things “typical” kids do.

Today, Joey gave me the best Easter present ever, he actually hunted his own Easter eggs without any cues from me to pick them up or helping him! Even without tears, he actually was laughing and smiling! He did it all on his own!

There is nothing worse than watching other children having fun, running around picking up Easter eggs and your child not even wanting to participate. I admit, as much as I love watching Leah, Aiden, and other children participate in Easter Egg hunts, deep down it’s always killed me that Joey didn’t want to join in…

This year, he grabbed his basket and took off through the yard picking up his own eggs! Although he may not have gotten as many eggs as Leah & Aiden, and they purposefully skipped over some so Jojoe would have some to get, he had a decent a amount in his basket.

One small step for man, one giant leap for Joey!