Category Archives: non-verbal

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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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!

 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!

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!

 

 

 

Our New Adventures in Sleep Training

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Joey’s sleep patterns at night have never been good, he wakes up 1 or more times a night and has always ended up in bed between me and my husband using us as his our personal kicking boxing practice bags while he sleeps.

At a recent appointment at our local Down syndrome clinic, when the doctor asked about his sleep, I broke down in tears and explained our battle with Joey at night. He didn’t think Joey has sleep apnea since he had a negative sleep study done five years ago, he thought it was more Joey’s autism and behavioral issues pushing through. The doctor suggested we see the Behavioral Sleep Psychologist at CT Children’s Hospital in the Sleep Center. Up until that appointment, I had no idea such a specialist even existed! Thankfully the wait to see this new doctor was less than 1 month.

At our first appointment at the Sleep Center, I had no idea what to expect. The Behavioral Sleep Psychologist walked in, sat down and started asking questions, and BOOM, my exhausted emotions got the best of me and I started crying as I started explaining our nights with Joey.

Her first suggestion was that we try to start “sleep training” Joey. She feels he never left the “infant stage” of sleeping and that he still wakes up at night just like an infant does. She then started explaining how we’re going to train Joey. She wanted my husband and myself to take turns every other night sleeping in Joey’s room next to his bed and to lock ourselves with him in his room so he couldn’t wander around the house at night and end up in our bed. Every time he was to get up, we were to ignore him and see if he would put himself back to bed and only intervene if he was at risk of hurting himself or being stubborn and not going back to bed.

Of course, directly after the appointment, I went a sporting goods store and bought a cot to put in his room. That evening, I put a hook and latch on the boys’ bedroom door to lock us in at night and explained to Aiden that if he needs to go potty, just to wake us up to let him out at night, lol!

Night one was pretty much a disaster. I don’t think I slept more than 1 hour at a time. I didn’t realize how restless of a sleeper Joey truly was at night! He tosses and turns the entire night! When he got up for the first time around 1:30, boy was he mad when he couldn’t get out of his door! He started yelling and growling then flicked on the lights. I sat up and told him to shut the light off and get back in bed, which surprisingly he did ! It took me a few more times cuing him to go back to sleep but he did for like 30-45 minutes at a time until 6:30am when I finally gave up and unlocked the door. exhausted

The following week, I met again with the Behavioral Sleep Psychologist, and told her how restless he is at night and how Joey keeps ripping off his blankets in frustration. When she said, we need to find a way to keep him from ripping off his blanket and perhaps we should consider another sleep study. We both sat there and brainstormed regarding the blanket situation. Since he doesn’t have the fine/gross motor ability to put his blankets back on his bed, she suggested perhaps some sort of a handle on his comforter and warmer PJs at night to lessen the need for as many blankets.

After the appointment, I went to work where I sat at my desk and pulled up Pinterest on my computer and searched “Autism bedtime” and I found a link for Homemade Stretchy Sensory Sheets! I quickly showed my husband the link and he agreed it was worth a try! So off to Joann Fabrics I went where I bought several yards of “stretchy fabric” and things to make the handles for his comforter out of. A few nights later, one of my dear friends came over and helped me sew Joey’s new sheets. I also had the bright idea to use industrial strength Velcro and attach Joey’s comforter to his bed so he can’t pull it off his bed as easily!

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As for the sleep study, it was a very long, hard night for Joey and myself. Lots of tears were shed by Joey as we struggled to get him hooked up to all the wires but thankfully the study came up negative so we’re not dealing with sleep apnea, it is a behavioral issue.

So far, we’re only a few days into his new sheets so I will be sure to keep everyone updated on our newest adventure/conquest to keep Joey in his own bed at night and eventually be able to sleep back in my own room at night. This is going to be a long process but I know will be worth it later on. Until then, I just need to keep on swimming…