Category Archives: siblings

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!

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…

 

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!

 

 

 

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.

Sibling Love, Always and Forever

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I often sit back and watch the bond between Joey and his two siblings. It’s amazing, simply beautiful. Other families who have a child with special needs and other children know the bond I’m talking about.

I knew I always wanted more than one child from the beginning and I knew I wanted my children close in age so they would have each other to play with. I grew up an only child and even though I had cousins my age who I saw on a regular basis, it wasn’t the same. I admit, it was very lonely and I knew I didn’t want my children to be lonely like I was.

So less than 9 months after I had Joey, we found out that I was expecting again! The day Leah was born, my parents brought Joey to the hospital to meet his baby sister for the first time. It was love at first sight for Joey. He has loved Leah from day one and the same when he met Aiden for the first time.

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Joey greeting Aiden when he came home from the hospital after he was born.

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Joey meeting Leah for the first time.

 

Leah has told me several times that, “Mommy when I grow up, I’m going to take care of Joey.” This truly makes my happy, proud, and at times sad. Sad mostly because the thought of not being able to care for him someday scares the heck out of me. I often joke around saying that I’m going to share a nursing home room with Joey someday.

The past few months, I’ve noticed the bond growing more with Aiden and Joey as well. The other morning, Aiden picked out Joey’s clothes for the day and helped him get dressed. I could feel a lump forming in my throat, as I watched Aiden help him. It’s such a wonderful feeling watching both of my children help Joey and love him the way they do.

Aiden also reminds Joey to go potty on a regular basis so he has less accidents which is honestly a HUGE help. Also, every weekend, Aiden enjoys sneaking down from the top bunk (the boys have bunk beds), and sleeps in bed with Joey. The two of them together are precious!

Both Leah and Aiden are VERY protective of Joey, if the day ever comes where someone messes with Joey in front of Leah and Aiden or if they ever find out, I honestly pity the fool…

What amazes me the most is how the two of them always know exactly what Joey wants. They know the best ways to play with him. As simple as the activity may be, they play along perfectly and rarely complain. One of their favorite things to do with him (it may drive some people nuts) but it’s actually the three of them chasing each other through our house. It may sound like a small pack of elephants but Joey loves chasing Leah and Aiden! He laughs the whole time they play along with him. Another activity Joey loves to do with them is watching of them blow bubbles and he pops them.

A few years back Dr. Brian Skotko and Susan Levine published a book called, Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters. The awesome thing is that Dr. Skotko has a sister who has Down syndrome and he just happens to be a doctor who has taken a huge interest in Down syndrome and runs a Down syndrome clinic in Boston! He is an inspiration not only to fellow DS siblings but parents as well.

The one thing that does ease my mind about the future is the fact that I have three totally amazing kids, and I know that between Leah and Aiden, Joey will always be watched over. And no one can ever take that extra special bond away between my children.

Aiden’s biggest fan

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Sadly last night was Aiden’s final Little League game for the season. Leah, Joey, my husband and myself have gone to almost every single game. And Joey has been one of Aiden’s biggest fans! He enjoyed watching his brother up to bat and running around the bases.

We’re all so proud of Aiden. While playing his first year of Little League, he’s gained confidence and a new love for baseball. It’s been so amazing watching him practice and develop his skills playing. Heck at last night’s game, he bunted a ball at bat AND stole second base! You should have been Joey jumping up and down squeeling with excitement as Aiden ran from first to second while he was stealing the base!

Now, we must wait till next Spring for next season to start!