Category Archives: parenting

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!

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!

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.

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…

 

What an amazing read! The Lucky Few 

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Whenever a new book published a fellow Down syndrome parent is released, I try to buy it. You should see my bookcase, I have my own little DS library! When I read online about The Lucky Few, I knew I just had to add it to my collection!

Adoption is such an amazing thing, it gives a pregnant mom a chance to give their unborn baby a better chance at life. It gives a parentless child a family. It gives adults the amazing opportunity to become parents. Adoption is beautiful!

As soon as the mailman delivered my copy of The Lucky Few, I opened my package instantly and plopped myself down on the couch to start reading it!

I admire the author, Heather Aviz’s courage to share her faith and openness to God during her and her husband’s adoption journey of their three beautiful children in her book!

In my first day reading it, I made it over halfway through the book! It’s one of those books you literally can’t put down! It was like I was with Heather and her husband, Josh during their journey. Especially when their daughter went for her open heart surgery. It felt like I was walking the hospital hallways with them!

Heather’s candid emotions are something as a Down syndrome mom I can totally relate to! Even though Joey has never had open heart surgery, he’s had two major bowel operations in which he spent several hours in the operating room and I spent nervously waiting for updates on my baby during this hours. They can truly be the longest hours of a parent’s life…

I could feel the love radiating from the book as I read it, not only from Heather’s point of view but you could also feel the love that Heather’s husband, Josh not only has for their three beautiful children, but also the love and support he has for Heather as well. What an amazing family!

It only took me a grand total of two days to read The Lucky Few, I just couldn’t put the book down once I started reading! I don’t want to give any details away for folks who haven’t read it yet but it is a must read and a great addition to your bookshelf! You can order it through Amazon or if you’re at Target, you can buy it there as well. I hope you enjoy it as much as I did!

***if you’re on Instagram, you can actually follow the Avis family and their many adventures on macymakesmyday.

Buried Treasure Comes in Odd Forms, The Long Lost Helmet

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As I’m deep cleaning our basement, I’m realizing the amount of junk one family can acquire over the years…

But in all the junk, I’m finding some amazing treasures! Some of these treasure finds I’m keeping, some I’m selling, and some donating or just throwing away. I’ve even gone as far as ordering a dumpster for next week so I can really clean house!

In all the things I’ve found, one really stood out as a true oddity but memorable treasure: the mold from Joey’s head and the helmet that he wore for 18 long weeks as a baby to correct Plagiocephaly and Brachycephaly! I mean, who else can find a mold of their own child’s head along with his old helmet laying around in their basement?! This mom can!

Joey had to wear the helmet for 23 hours a day. The only time it came off was when it was time do his bath and for us to wipe down the inside of it with rubbing alcohol. I had to drive him once a week 40 minutes each way to have a helmet adjusted. By the end of the 18 weeks, I could do that drive with my eyes closed!

But those 18 long weeks were so worth the wait in the end when he went from having a completely lopsided head to a perfectly round head. Just look at these before and after pictures!

Looking back at these pictures and remembering all those long, stressful days with Joey and the helmet 10 years ago. I realize now how grateful I am that we took the time and had his head corrected. I can’t imagine Joey now being 11 years old and have a lopsided head!

As I continue my project of deep cleaning our basement, I wonder what other hidden treasures and memories I may come across…

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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!