Category Archives: Down syndrome

Important Life Lessons Down Syndrome Siblings Taught Us

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There is a true connection between a child who has special needs and their siblings. Honestly, there’s no other connection like it. I know this for a fact, first hand from watching Leah & Aiden and how they are with Joey. It’s truly wonderful to sit back and watch them communicate and play with him. They always seem to know exactly what he wants/needs.

I’ve decided to “interview” Leah & Aiden about having Joey as their brother, and share their responses with my readers. I’m not going to go into details about what they said, just know that I’m super proud of them for opening up to me and for their honesty. They truly are amazing kids!

I also decided that Leah is mature enough to read a book called Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters by Dr. Brian Skotko and Susan Levine, so I went ahead and ordered it for Leah to add to her summer reading. I may have to read it as well and perhaps the two of us will do a book review on it once we’ve both finished reading it!

Dr. Brian Skotko just happens to have a sister who has Down syndrome is one our nation’s top genetic specialists specializing in Down syndrome, and runs the Down syndrome program out of Mass General Hospital. So he knows first hand the connection that Leah and Aiden have with Joey.

I hope you enjoy Leah & Aiden’s first YouTube video just as much as I did making it with them!

A Star is Born, Joey’s Night to Shine

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Last night was Leah & Joey’s 4th grade choir concert. The kids all did awesome and during the day the 4th grade performed for the school as well. I decided to go see that performance as well.

I have to say that Joey OWNED the stage with both performances! Although he didn’t sing, he danced along with the music, bowed before and after each song, and clapped along with the audience. The only bad behavior he truly had was when he was trying to throw his chair off the stage (he didn’t want it there lol!)! Thankfully he only did that during the day time performance and not the evening as well.

I’m so grateful that Joey has such amazing classmates that have been with him since preschool and know him. They all smiles and giggle during their songs at Jojoe as he did his own performance. The choir concerts are truly a day I will remember and cherish forever!

And I’m so proud of Leah for standing next to her brother and occasionally taking his hand to hold and let him have his moment. They both did awesome!

It was Joey’s night to shine and be a star!

The Dreaded P Word…

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The dreaded “P” word… puberty…  not just dreaded by special needs parents but also parents of typical children as well. As Joey gets older, it’s obvious that things are changing. Emotions, his body, all things I am NOT ready for… but I know is coming…

Joey has always been typically a happy, go lucky kid, UNLESS you take away his beloved iPad. Lately, I’ve noticed he’s becoming more emotional when his shows/movies end or he doesn’t get his way. Even when he gets sleepy, he’s emotional. He cries more easily, his feelings are getting hurt more often. And pretty much every “word” he’s been saying lately is “argh” which means “no.”

And as for body changes, I’m not going to go there… but I’ve noticed things are definitely changing… he’s growing up right before my eyes.

For special needs parents, these changes can be more difficult to handle. I mean, how do you explain to a non-verbal girl that she’s started her monthly cycle? How frightening to look down and not understand what she would be seeing, I know it was scary for me when I started! (One reason I’m honestly grateful Joey is a boy!)

For me, truthfully, I have NO IDEA how I’m going to handle shaving Joey’s face when he starts growing facial hair. I already know it will have to be with an electric razor. But the battle we have to go through to even cut his hair is horrendous! In the past I’ve done it by strapping Joey into a booster seat, and someone holding down his arms and legs, and I use clippers to buzz his hair. Lately I’ve been plugging in the clippers to an extension cord, sitting on the floor behind Joey, wrapping my legs around him and as he rolls around, fighting me, I do my best to cut his hair at the same time. I really need to have someone video it one of these times…So yeah, no idea how I’m going to shave his face…

It’s been very difficult for me to accept this fact, even though he’s 11 years old and my oldest child, I still think of him as my baby at times. Especially since he’s not fully potty trained and still wearing diapers (pull-ups), still does not talk, and is only 55 pounds.

Just this past month, I had to go buy him deodorant for the first time. He isn’t thrilled about the idea of me lifting up his arms and putting onto his armpits, it’s going decently.

I’ve held off buying books Down syndrome, Autism, and puberty  mostly out of fear. Just last night, I went out to dinner with some of my fellow Down syndrome moms and this topic was brought up. We all have children all the same age so we’re all dealing with it at the same time. That is something I’m grateful for, to have moms that I can relate to and throw ideas around about it.

There’s the fear of him growing up. I’m just not ready to accept it, but I’m doing my best…

The fear of him getting bigger than me.  How am I going to be able to pick him up or handle him at the doctors when he’s bigger and stronger than me?

The fear of the unknown: is he going to speak someday or is he always going to be nonverbal?

The fear of if he starts speaking and wants to find someone to love, will he find love?

So tonight, I opened myself an “adult beverage” and pulled up good old trusty Amazon on my laptop and searched “Down syndrome and puberty.” Two different books came up, “Teaching Children with Down Syndrome about Their Bodies, Boundaries, and Sexuality (Topics in Down Syndrome)” by Terri Couwenhoven and “When Young People with Intellectual Disabilities and Autism Hit Puberty: A Parents’ Q&A Guide to Health, Sexuality and Relationships” by Freddy Jackson Brown and Sarah Brown it’s time to break down and order these to add to my Down syndrome.

So I guess it’s time to accept the fact that my baby is growing up whether I like it or not. Life WILL go on, I WILL get used to this fact and hopefully someday Joey will accept us shaving his face or he can grow a beard and be like the guys on Duck Dynasty!

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!

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