Category Archives: Educational

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!

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

Life’s Expectations…

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691.JPGAs Joey gets older, I’m seeing more and more changes academically. Although he is in the same 4th grade home room as Leah, the academic work has gotten more difficult and the current curriculum can no longer be adapted to Joey’s needs and he spends the majority of the day in the special education room when he is not in specials (gym, art, music, library) or doing one of his jobs.

When we went for the annual open house at the kids’ school the other evening, I have to admit, I was pretty heartbroken when I walked into their classroom and discovered that Joey does not have a desk in that room. This is the first year where he’s not been in a regular classroom. Now, before any of the inclusion parents go bashing our choice, keep in mind, that this is our choice that he’s in the SPED room most of the day.

But it hit me in a way I wasn’t expecting. Life always finds ways to say, “Hey! Things aren’t going the way you expected them to go!” I guess I was just expecting him to have a desk with his name on it in the home room like all the other years just like all the other kids.

When Joey was a baby, before we knew he was going to also have Autism, I wanted more than anything for him to be 100% totally included in the regular mainstream classrooms. Now, I know to meet his needs, this isn’t the case. We have to do what’s best for Joey, NOT what I dreamed for and wanted for him originally.

He needs true one on one support 24/7 in the classroom. He can do basic things like write his name, count to 10, can point to the correct letter, color, shape, etc. A great deal of his school work in now being done on his iPad. He seems to be more eager to work with the iPad than a piece of paper. He’s even started building sentences on his iPad as well!

It just hits home when I see the work Leah is doing compared to Joey and they’re in the same grade. Even though I know I shouldn’t be comparing them. It’s just so hard sometimes not to.

Over the past year, since we’ve allowed the school to pull Jojoe out of the regular ed classroom more, we have noticed some improvements in his socially, behaviorally and even vocally. He’s getting the true one on one attention he needs and for that, I am forever grateful to all the staff at the school who have worked with him.

Just last week I had a meeting with some of his team and the school lunch lady to see if we can start adapting the school lunches to where he’ll eat them and not just the same few foods at home especially since he’s done so good with me eating at some restaurants! So, on Monday, which was cheeseburger day, Joey went through the lunch time and got his burger. The staff put it in the blender to make it mechanical soft and wouldn’t you know, after covering it in ketchup, JOEY ATE HIS FIRST BURGER!!!! Talk about a proud mommy moment when I read the email from his teacher!

Thankfully, Joey is such a “big man on campus.” He’s still very much included in activities around the school. He even has the big task of working in the school’s recycling program where he goes to every class throughout the week and helps to collect the recycling from the rooms. He’s the school custodian’s best buddy!

I look forward to the future for all three of my kids, seeing what each of them can achieve but also at times, I’m terrified for them, especially Joey, not knowing what the future holds for him. But I cannot let my own personal anxiety get in the way, I cannot control what the future holds and need to live each day, one step at a time.

First Day of School 2016-2017

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It’s been a while since I’ve posted. There will be a post on Her View From Home coming up on Sunday about where we’ve been all summer until then, I thought I would share Joey, Leah, and Aiden’s 1st day of school pictures. I know by now, you’ve probably seen your fair share of first day pics on your friends Facebook pages, but being the proud mom I am, I had to share ours as well.

It’s hard to believe we have two 4th graders and a 2nd grader! It’s so bittersweet knowing that my children are growing up. I want them to stay kids and enjoy their childhoods as long as possible. Seeing the joy on their faces gives me a feeling that I can’t feel through anything else.

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Joey wasn’t feeling the excitement that Leah and Aiden were feeling waiting for the bus. He was less than enthused until he got on his bus and it pulled away. I was able to get a peak at him through the bus window and there was a huge smile on his face.

As for Leah and Aiden, it was just another day in the park. They were ready to go back and see their friends.

And as for me, schools back in session people! Mommy is able to go back and work at the office while the kids are at school and the house halfway stays clean lol!

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It Takes a Village…

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The saying, “it takes a village to raise a child” is so incredibly true especially when it comes to raising a child with any intellectual, developmental or physical disability. In the case of raising Joey, along with the support from all of our family and friends, our village began to grow shortly after birth when he started with Birth to Three (aka Early Intervention in some areas of the US). He started out getting weekly physical, and occupational therapy. Then a few months later speech therapy and a teacher joined the group. By the age of 1, these visits were 1-3 a week per therapist!

Along with help from all of his therapists since shortly after birth,  Joey has seen a wide varity of doctors including a pediatrician, geneticist, cardiologist, otolaryngologist (ENT),  gastroenterologist, ophthalmologist, urologist, orthodontist, behaviorist, developmental neuropsychologist, audiologist, and orthopedist (and I’m sure there’s more I’ve forgotten about). But I have to say, I truly can’t complain. There’s parents who have children who have seen way more doctors than my child will ever see….

We are also blessed that our insurance covers home health care for Jojoe. We are so blessed that we’ve had the same CNA coming to our house for the past 3 years, 5 days a week. Since Joey likes to try to sneak off (he’s a wanderer/eloper),he can also destroy a room in 5 seconds flat, and rip off a dirty diaper as soon as I turn my back, she’s a huge help! Without her, I wouldn’t be able to cook dinner or keep the house as clean as I do.

At three years old, Joey left the Birth to Three program and started in preschool through our local school system and has been at a local elementary school in our town since then. Through the public schools, along with this PT, OT, and ST, he also gets help from his regular education teacher, special education teacher, numerous paraprofessionals, teacher’s assistants, art, gym and music teachers.

I’m grateful for all of these people who work hard to provide services and medical care not only for my child but for everyone. They work long hours (some of which they don’t even get paid for) and don’t get nearly enough recognition.

Along with all of the people I’ve mentioned, also part of our village is fellow special needs parents. Without my DS moms, I would be LOST! Especially the ones who have older children that I’ve been able to turn to for advice on parenting a child with Down syndrome. While I was still pregnant with Joey, we joined the Connecticut Down Syndrome Congress. I owe so much to those families who helped to guide me all of these years! If there’s one piece of advice I have for new and expecting families of children who have Down syndrome, contact your local DS group, they are your best and number one ally. I have a list I’m working on of local DS groups around the US you can find here.

Through our church, I’ve met so many wonderful people, including a handful of special needs families who have the same Catholic beliefs as us. Whenever Joey is sick and in the hospital or has a scheduled surgery, it just takes a quick call to our priest to pray for Joey. And the power of prayer works!

And obviously, our families. I have to say, it doesn’t matter how far away they live, family is family and we’ve always been able to depend on our family for anything day and night. The same goes for our friends, especially my group of best friends. I would be LOST without their support!

So, when I say it takes a village to raise a special needs child, I truly mean it. Without the help from everyone over the past 10 1/2 years, Joey wouldn’t be who he is today and I would be one tired momma probably with a lot more grey hairs and wrinkles.

 

Know Your Child’s Educational Rights

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Recently, we had some events that happened that have made me put back on my advocacy shoes and brush up on Special Education Law. When Joey was still in Early Intervention aka Birth to Three here in Connecticut, I took a Parent Advocacy Leadership workshop. It was one of the best things I could have done. That along with attending multiple Down syndrome conventions, locally and nationally, I have learned so much about fighting for what is best for Joey and I will continue to learn as long as I’m living.

As a parent, be sure you know your child’s rights, even if they’re not in Special Education. There are several laws out there to protect your child: The IDEA (Individuals with Disabilities Education Act), The ESSA (Every Student Succeeds Act, AKA “No Child Left Behind”), The FERPA (Family Education Rights and Protection Act), The WIOA (Workplace Innovation and Opportunities Act), The Higher Education Act, and also your child’s civil rights.

Every time I feel discouraged, I just look at Jojoe and remember why I fight for him. As a special needs parents, we MUST fight for the most needy population, many of these individuals cannot speak for themselves, although I know some who can and I love seeing pictures of them on Capitol Hill, addressing our government and being totally awesome self advocates. Until the day comes that Joey can speak for himself, I will continue fighting for him.

You can learn about all of these laws, straight from the U.S. Department of Education’s website. Educate yourself, you are your child’s first and number one advocate, but just remember you are not alone. If you need to reach out to other parents or advocates, don’t be shy or worried someone won’t believe you. Heck, there’s still times I reach out to parents of children who are older than mine for advice.