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!

What a Wondrous Book!

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As soon as I saw the trailer for the upcoming movie Wonder, I knew I needed to order the book by R.J. Palacio for myself! And since the age range of the book is 8 and up, I knew Leah be able to read it as well. Being the sibling of such an extraordinary brother, I knew this would be a book she would enjoy as well.

It was yet another book I couldn’t put down! I finished reading Wonder in 3 days, not too hard seeing that it’s geared for children 8 and over.

I felt like I was right in the middle of Auggie’s life! Not only reading from his point of view but also from his loved ones as well. Especially his parents. Being the parent of special needs child, there were parts I could totally relate to. Even though August doesn’t have a developmental/ cognitive delay, he still gets the looks, stares and rude comments from people who don’t know Auggie and his family.

I highly recommend Wonder to any adult or child who can read at a 5th grade reading level. Now that I’m done reading it, I’ve passed it onto Leah who is just like her mommy and can’t put the book down either!

Sadly, we have to wait till November for the movie to come out in the theaters, until then, I have time to read the other small handful of books featuring Auggie and his family & friends! I’ve included the movie trailer below if you haven’t seen it yet. Just think, Owen Wilson AND Julia Roberts, it doesn’t get much better than that!

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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puberty

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!

Big news! Joey’s newest milestone!

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Whenever Joey passes a new milestone, no matter what it is, I try to celebrate the moment whatever it may be. As a special needs mom, we pray and hope for our children to try or do something new on a daily basis! We relish and hope for those moments. At 11 years old, I pray for those moments each and every day, especially for my child to speak.

Today Joey decided to bless us with a new word! Up until now, my boy has only said, “mom”, “yes”, and “no”. Now we can add his favorite animal to his vocabulary! Although he doesn’t pronounce the “f” in fish, he says “ish” as he does the sign for it as well! Talk about a proud mommy moment!

Jojoe was rewarded with a trip to the pet store to watch the fish and even pick a few news ones out for his tank! We also read One Fish Two Fish Red Fish Blue Fish by Dr. Seuss this afternoon and also cuddled on the couch and took giggle filled selfies together!

I can’t wait to hear what ever Joey’s next word may be!

Detox Baths- Relaxing On a Budget

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One of my favorite evening rituals and ways I get time to myself is taking a nice, long, hot detox bath. I’m not talking I dump some Calgon in the tub, soak and call it a day, I’m talking Epsom salt, baking soda, lavender essence oil and for the really achy days some mint essence oil as well.

 bath

After a rough day when Joey’s been a little extra difficult to handle, I’ve lifted the little dude too much & my back is aching, or even if I have an awful headache or my anxiety is swirling out of control, this I my go-to way of relieving my sore, aching body and mind.

As a mom to three children, taking that time to care for myself is super important as it should be for every mom! If we don’t care for ourselves, how are we supposed to properly take care of our children?!

The awesome thing about the baking soda, Epsom salt mix is that the baking did helps to open up the pores in your skin which then makes it easier for the magnesium in the salt to be absorbed in your body. Not to mention, it’s also awesome for your skin!!!

Another added bonus is that these baths help you to sweat out a little bit of your extra water weight, which is always a good thing!

This is great to people who suffer from migraines, chronic pain, anxiety, depression, and even for individuals on the Autism Spectrum!

The measurement suggested for the detox bath are:

  • 2 cups Baking soda
  • 2 cups Epsom salt
  • Essential oils to your liking, I prefer lavender and mint. Some people add in eucalyptus oil and other favorites as well!

And to make this even better, you can find all the ingredients on Amazon for really cheap!

I wish I had the time and resources to go to the spa or get massages, who am I kidding?! At least by taking the time for myself several times a week, I am able to somewhat relax and the kids know that once they’re in bed and I’m in the tub, it’s my sacred time.