Coop-kid

"Great, Anthony is going to be a coop-kid all week long. Look at this forecast!" I handed Joe my phone to show him the gloomy outlook on our week: rain, rain, and more rain!

Coop-kid: A Mango-ism created to describe the idea of being cooped up, going stir crazy in a house due to the weather. The term "coop-kid" came about because it sounded like the name of a character on the TV show Hey Arnold, "Stoop-Kid", who was always on his stoop because he was afraid to leave. There is no real connection between the two terms, we just thought it was funny.

"Looks like we're going to have to find something fun to do since we can't go outside. This is going to drive me nuts!"

Joe leaned down to give Anthony a kiss, but instead was met with a quick swat to the face. Our little magician held Joe's glasses in his hands, so proud of his accomplishment. "Hey give me those back little man!"

As Joe grabbed his keys he looked back at me as if to say "Ha, I get to leave." I shot him my best squinted eye response and he said, "You have fun, you coop-kids."

He shut the door, and then Anthony and I looked at each other.... now what?

I looked up the event schedule of our two favorite local libraries, and thankfully there was a class that sounded right up our alley. It was called "Jitter-bugs" and they promoted a fun time filled with bubbles, music, stories, and a parachute. Sweet, we're in!

Thankfully even though "Jitter bugs" was during Anthony's scheduled Speech Therapy time, his amazing therapist agreed to meet us there. Anthony has been getting a little antsy during his therapies lately, and I think it's because he is just bored being in our house all day using the same materials and toys. This class would surely be a good change of pace.

I was excited to see Anthony interact with all the other kids, but I was also just a little nervous. Anthony is home all day with me, and has limited opportunities to experience social situations with other kids his age. From what I have seen before when I brought him to playgrounds he loves other kids, but does not yet understand personal space.

We got to the library, and took a ticket to guarantee a spot in the jitter bug class. Since it was about 20 minutes before the class started, we met our speech therapist in the kid section of the library to hang out. The place was swarming with kids, all Anthony's size.

I held him close as he took in the new environment for a second before letting him down. Honestly, he wasn't the only one. I was nervously scanning the various families and kids that surrounded us too.

I put Anthony down, and his therapist and I were at each side.

Anthony is a kid. He doesn't care what people think. He sees other children, and he just wants to play with them, that's it.

Maybe it's because I am still new at all of this and haven't experienced these social situations with Anthony a whole lot yet, maybe it's because I'm a sensitive person, or maybe its just because I am his mom... but as I followed Anthony around the room I felt my anxiety level rise. I looked at all the other moms talking to each other while their kids played on the opposite side of the room, like it was no big deal. Must be nice. Instead, I was left feeling like a body guard constantly monitoring Anthony so he wouldn't poke, hit, or kick. I was a broken record repeating two key words: "I'm sorry"

 "I'm sorry, he is just learning facial features he didn't mean to poke her nose.....I'm sorry, he didn't mean to throw that he was just excited....I'm sorry, I'm sorry, I'm sorry..."

Each time, the lump in my throat grew and grew. It's so painful as a parent of a child with special needs to feel the need to apologize for their every action. I don't ever want to apologize for who Anthony is, because he is the coolest kid I know. For some annoying reason I am so fearful of how others view my son. I want them to see what I see, and when he acts a little different than their children and can't communicate in the same way I worry their smile is fake.

Anthony had no idea how I was feeling. He was in his element. This kid loves other children, and wants to interact with them in the worst way. I was totally proud of him, despite how I was internally feeling. Here was my son, in a small room with a lot of people and a ton of stimulation, handling it beautifully. He had a few mishaps, but I could tell he was having a really good time.

Finally it was time to go into the group room to start the jitter bug class. I let out a huge sigh of relief because I knew once Anthony was in a structured(ish) environment he would be a whole lot more successful. It was tough reining him in while everyone was sitting down in a circle on the rug. He kept getting up and walking to the center of the room to loudly announce he was there, and boy did everyone know he was, ha!

All of a sudden he heard the tune of a familiar song and I saw his face light up.

"The ants go marching one by one, hurrah hurrah!...."

Anthony picked up his music sticks and started hitting them on the floor to mimic the beat just like the other kids. His therapist and I looked at each other and we were both beaming. I was bursting with pride. My little boy was doing it. He was doing exactly what every other kid was doing in that room, and they were all the same in that moment.

Anthony continued to amaze me. When the teacher was reading a story about a caterpillar sleeping, she asked the kids to pretend to go to sleep too. Anthony scooted off his therapist's lap and put his head on the floor. He kept peeking up to make sure everyone else was doing it too, and then would resume his "sleep". It was adorable.

Throughout the class I looked around the circle of kids and there were more times than I could count where parents had to apologize for their kid taking another's instrument, or for stepping on someone, or for yelling when they weren't supposed to.

In those moments I realized that I was my own worst enemy. I was the reason for my high anxiety, not everyone else. I bet most of the parent "looks" I over-analyzed, were not what I thought. I was sure that everyone was looking at Anthony like he was different, and they didn't want him near their children out of fear for how he would act.

I realized that I was wrong.

Every child in that room was a toddler. Toddlers don't care if the teacher says it's time to be quiet, they'll still chat it up with their neighbor, or yell, or throw their instrument, or poop in their diaper. Toddlers don't care if they're making a good impression or not. They're all just toddlers. I was stupid to think that Anthony was any different.

The only thing that matters in this world is Anthony, and his happiness... and boy was he happy today.

Anthony will certainly not be a "coop-kid" anymore. I will make sure he has every opportunity to experience many, many different things. The whole "personal space" concept will come with time, I am sure!


* As a side note: I know that as Anthony grows, the developmental gap between him and his peers will most likely get larger. I know that when that day comes, it will be tough. But, as of today, he is just a toddler, and I will enjoy every minute of it!

DIY Down Syndrome Diaper Guitar

 

I make diaper guitars for the Beautiful Beginnings baskets we make for babies born with Down syndrome. You can read more about Beautiful Beginnings on the top tab of this blog if you're interested!

 

I thought doing a diaper guitar would fit the theme of our basket "rocking an extra chromosome". I searched through many different YouTube videos and blog posts about how to make a diaper guitar, and settled on the way I am going to show you below:

 

 Each time I make a diaper guitar it comes out a little different depending on the materials I have available. The main materials I use each time are:

-two Tupperware bowls (one big, one small)
-Diapers
- Onesie
-Bib
-Two 30" x 30" receiving blankets
-Two rubber bands
-Heavy fishing line
-Pins
-Ribbon of various sizes
- A pair of socks


STEPS


 1. Get your two bowls ready. One should be smaller to make the top of the guitar.

2. Start lining the bowl with diapers. In these pictures I used size 1 diapers, but you can use any size. If you use a smaller size of diapers you will need more than if you use a bigger size. Face all the diapers the same way as you layer them in the bowl. Leave about a one inch space from the top of the first diaper, then place the next one on top. Layer the diapers around the edge of the bowl, until you reach the first diaper again. Tuck the layering diaper behind the first one so it completes the circle. Keep layering the diapers in the middle of the bowl until there is no more room. Wrap a rubber band around the diapers while still in the bowl. Roll the rubber band down to the middle of the diapers and then pull out from the bowl.

 



 

3. "Dress" the two finished diaper rolls in a onesie. In this picture I used a white 3 month onesie. The smaller diaper roll should be at the top, and the bigger on the bottom. 

 4. Place the bib on the onesie. The opening of the bib should be placed on the bottom of the guitar to mimic the hollow hole on an actual guitar.

 

5. Take out your two receiving blankets. Pick which one you want to use as the neck, and which one you want to go around the guitar. During this next step, you are going to be wrapping one blanket around the diaper guitar to keep all the previous steps in place.

 



 

 6. Open up one of the receiving blankets, and fold it. The size of each fold should match the width of your diaper guitar so it wraps around without any extra showing on the side.

 

7. Take the folded blanket and wrap it around your guitar. You may need to squeeze the guitar together a little to make sure the blanket fits around and meets together at the top.

 

 8. Pin the blanket at the top of the diaper guitar so it does not move.

 

 9. This step is not necessary, but I like it to decorate my guitar and make it look nice! I use ribbon to wrap around the blanket, and pin it to the top.

 

10. The next step requires heavy fishing line. I tried a few other ways of doing this, but after failing many times I found that heavy fishing line does the trick! I use the fishing line to bring in the middle of the diaper guitar so it looks a little bit more like the body of a guitar. Tightly tie the fishing line around the middle to secure the shape of your guitar.

 



11. Now, you are going to use your second receiving blanket. My blankets came already wrapped up like the one below, which is perfect for the next step. If yours does not, just unwrap it and tightly fold it to about an inch (1.5 maybe) wide, and secure it with tape. This will be the neck of your guitar. 

 12. For this next step you can use a small ribbon, or ribbon like I used (the kind you find on the end of a balloon).

 13. Turn your folded blanket over to the side with the flap. Use a pin to secure the start of your ribbon to the top of the blanket. You are going to wrap the ribbon around the blanket roll until you reach the bottom. As you wrap, the ribbon should look diagonal on the back and straight across in the front. When the ribbon reaches the end of the blanket, pin it on the back.

 

 14. Lay the neck you created on top of your diaper guitar. Attach it to the guitar using fishing line on the bottom and in the middle. The fishing line should be pulled tight and tied in the back so the neck does not move around.

 

 15. Give your guitar a personal touch with a message or logo in the bib opening. I have done this in two ways before, by printing something out and placing it in, or by drawing on a white piece of paper and cutting it to fit.

 

 16. Use ribbon to make a bow on the top of the neck.

 17. Use a pair of baby socks to put on top of the neck. I stuff one of the socks inside the other to give it a shape.

 

Done! You can play around with different colors and themes for your own guitar to make it unique. I used blue and yellow  to match the Down syndrome ribbon.

The Dentist

Today was the dreaded day- Anthony's first visit to the dentist aka "doomsday"!

Before writing about the visit, I need  to give you a little background information:

Anthony's teeth took a while to come through (typical characteristic of Down syndrome), and when they did come in they didn't follow the normal pattern (also typical of DS). So far, Anthony has a grand total of 8 teeth. That just means we are not in the clear yet and still have many cranky teething moments ahead of us. Oh Joy!

Another side-note, Anthony has always hated anything to do with his own mouth, but he is fascinated by other people's mouths and teeth (we've always joked he was our "little dentist"). Lately, trying to brush his teeth every morning and night is like a form of torture for everyone involved. We give it our best shot, but it ends up being a quick in-and-out job to avoid a huge tantrum.

When Anthony's first two bottom teeth popped up, we knew there would be an orthodontist visit in the future. The two teeth form a "V" together, instead of being straight.

But, honestly, I never really cared about his crooked teeth. If having crooked teeth was the worst of  our problems, we were pretty darn lucky.

Ever since getting his teeth in, Anthony has smiled in a way that would crack us up. We thought he was being a "tough guy", trying to show us his teeth by protruding them over his top lip.  It makes me feel horrible now that I didn't know he wasn't trying to be funny, he was sincerely trying to mimic our smile.

Joe was the first one to notice Anthony's underbite. Since Anthony doesn't like us looking in his mouth, we honestly never knew he had one until one day when Joe saw Anthony's two bottom teeth go over the two top teeth.

I, of course, went to google and read that having an underbite can effect speech and chewing. I knew that it meant I had to call and make an appointment with a dentist. I had hoped I could conveniently "keep forgetting" to set up an appointment since I knew it would be horrible for Anthony, but once the underbite came into play, I knew I had to suck it up and make the call.

 The dentist visit went just as I suspected, a little family trip to hell. It started out fine, well in the waiting room that is. He was being his usually nosey self getting into everything and watching all the people around him. When we got called back, Anthony happily marched down the hall pointing to all of the Disney characters on the wall and acknowledging all the pretty ladies that worked in the office. He had no idea what was to come.

It was called a "lap visit" because Anthony (being only 20 months) was too young to sit in the dentist chair. So, Joe was the designated "bad guy" and held Anthony while his little screaming head was in the lap of the dental assistant. She told me she was going to give his teeth a really good cleaning and put floride on them too. All I could do was laugh and mutter "good luck with that".

Anthony was so scared. He screamed so much that at one point he wasn't breathing, and it was the "silent cry"... that's the worst. So heartbreaking! I tried to hold up my phone with his favorite Sesame Street video to calm him down but he probably had no idea it was even there since his eyes were squeezed shut and he was yelling so loud.

I'll admit, it was a pretty effective way to clean his teeth. Aside from all the screaming, she was able to do everything she said.

It took a while to calm him down before he saw the dentist. She looked in his mouth, which again was a whole big fight. Then, we were able to discuss our concerns. She said an underbite can't be corrected in someone this young. Our only option is to monitor it, and hopefully start correcting it when he is 6 or 7 (that is the youngest, it could possibly have to wait until he is older). The thing that made me nervous was when she said it was a severe underbite. His two bottom teeth cover his two top teeth 100%. She also told us that it is possible his jaw could continue to grow and jut out, which would cause an even bigger problem. Since he has an underbite he is more likely to break his teeth if he falls, so we have to be cautious about that too.

It felt like a lot to take in.... but she wasn't done with the news yet. She also noted that the two teeth on either side of his bottom front teeth had not come in yet. That typically wouldn't be a concern, but since Anthony already started getting molars in, it was a red flag to her. Molars are supposed to come in last, and even though getting teeth in is more sporadic for individuals with Down syndrome, it could be a sign that Anthony might never grow those teeth.  She told us that she had seen cases before in children with DS where their teeth just never grew because the "buds" under the gums were never there. If this indeed happens to Anthony, he might have to have braces to shift his teeth and close in the holes, or get false teeth in their place. However, she didn't recommend fake teeth because individuals with DS are at a higher risk of getting gum disease.

Honestly, I liked the doctor and the people that worked in the office but I was left feeling really scared and overwhelmed. There was a lot of  worst case scenarios brought to our attention and it felt a little unnecessary.

I think the hardest part about all of this, as a mother, is thinking about my little boy going through elementary school with a severe underbite. It leaves me with a pit in my stomach thinking that he might get made fun of for that. I want more than anything in the world for my son to be accepted and loved by his peers.

But, I have to bring myself back to reality. I am so lucky. Anthony is a healthy little boy, and not everyone can say the same about their child. It seems so petty that I can complain about something cosmetic going on with my son, and I hope that it's the only thing I have to complain about ever.

I just love this little guy more than anything in the world and it's never easy knowing it might be a bumpy road ahead.. cosmetic or not.

World Down Syndrome Day , better late than never!

World Down Syndrome Day (3/21) has come and gone, and surprise surprise I have not had time to sit down and write about all of its amazingness... until now!

 

Garnet Valley School District (the district where my husband and I both work, and where we met) decided to participate in the world-wide event: Rock Your Socks.  The Delaware Down Syndrome Association does a wonderful job getting mismatched socks out to hundreds of schools, businesses, and individuals to help spread awareness! Since the event has grown so much bigger, they needed help unpacking the socks, mismatching them, and putting them together again with information about WDSD to send out to various places that were going to sell them.

I went to volunteer to get socks ready, along with other wonderful individuals! I thought it was going to be a small group of people volunteering, boy was I wrong! It was quite the production! There were people everywhere working to get the crazy socks together. It was a total mad house, but in the best way possible.

 

 

 

Garnet Valley alone picked up 4,000 socks to sell in preparation for WDSD. Each pair of socks cost $1, and the money raised would go right back to the Delaware Down Syndrome Association for providing the socks.

Guess what? 4,000 socks for GV was not enough.... they sold out the day before WDSD! When I heard that news, I couldn't stop smiling. That meant at least 4,000 people were going to show their support for Down syndrome! It blew my mind.

There were other schools and businesses that wanted to join in on the fun too, and they also rocked their socks for WDSD! One of the school districts decided to participate in the event because someone shared Anthony's WDSD video and they thought it was a good idea!  Go Anthony for making a difference!!

IMX Medical Management Services (where both of Joe's sisters work) went above and beyond to celebrate this special day. They took a sample Beautiful Beginnings basket (click the Beautiful Beginnings tab above if you don't know what that is) to raise money, at their office, to make more baskets. They also participated in the Random Act of Kindness event that I wrote about in the previous post.

 

I was so moved that others wanted to spread awareness by doing the Random Acts of Kindness after I posted about it. My mom's friend Terry bought coffee for a stranger in line behind her and gave them a card about World Down Syndrome Day, and my mom and dad bought dinner for a father and his daughter at a restaurant. Those people said they were going to pay it forward and spread the message about World Down Syndrome Day too!

A lot of work went into getting ready for WDSD, and our little family was so excited for the day to finally arrive! That excitement turned into fear when the weather forecast called for snow.  I cursed the weatherman and prayed this would just be another time he was horribly wrong. There would be some pretty pissed off Mangos if there was no school for WDSD!

Thankfully, school was still on! Joe and I put on our matching shirts, our crazy socks, and were off to celebrate everything about Down syndrome for a whole day!

It was amazing to be a substitute in a classroom and have so much time to educate the students about Down syndrome. They loved the activities, stories, and videos so much they kept asking for more and more! After I walked the students to the bus, and went back to the empty classroom I cried. It was such an amazing day, and it might not have meant much to anyone else but to me it meant the world. The whole day I was sent pictures of people wearing crazy socks, I walked around the building and saw the whole school wearing socks, I sold tons of my Down Syndrome Lesson on Teachers Pay Teachers (the fact that this lesson has been my highest paying lesson on TPT to date makes me so excited... and honestly, it's not because of the money, it's because I know all of those lessons were purchased to use in a classroom somewhere. That to me is so humbling that students are learning about Down syndrome because of a lesson I wrote) and I took it all in, until there was so much pride and happiness it just came exploding out.

As a mom of a little boy with Down syndrome it is my mission to make sure he grows up being treated with respect, and is accepted for the amazing individual he is. Anthony is not even two yet, but I already see a change in the way people around us view Down syndrome. I see people willing to learn about something new and I see young students soaking up the message that we are all different but still alike in so many ways. In Anthony's two short years he has already made a huge impact in the community around him. I know that if this momentum keeps up, the world will embrace him with open arms and he will be able to do absolutely anything anyone else can!

 

Thank you to everyone that went out of their way to show support for Down syndrome and to help spread awareness! You all rock!!!

WDSD's actual date fell on a Saturday (it was just celebrated in schools on Friday), and we had a really fun Easter egg hunt planned, but it was cancelled due to snow. It was rescheduled for this past weekend, and even though there was no snow on the ground the weather screamed winter! It was brutal (34 degrees)! But, we managed to snap some cute pictures before Anthony had a complete melt down!

"Your mom made you come to this too Antonella?