Down Syndrome Awareness Month: What is Down Syndrome?

October is Down Syndrome Awareness Month which is very exciting in our household because we love getting to share what Down syndrome is to anyone who will listen. When we were told our son, who is now almost 2, had Down syndrome we had to do a lot of research because we didn’t know a lot about it. That research led us to understand that technically “Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21 [and] this additional genetic material alters the course of development and causes the characteristics associated with Down syndrome” (according to the National Down Syndrome Society). But to us, Down syndrome is so much more than that…

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To us, Down syndrome is:

• watching my mom get a tear in her eye when Ryan finally calls her “ga-ga”.
• hearing my dad say that Ryan was “chosen for the perfect family” and “that he will teach us so much.” when we told him.
• having everyone stop me in a store just to say “hi” to Ryan.
• immediately having a club of strangers who are also part of the “lucky few” and feeling connected to them in a way other people can’t understand.
• celebrating like crazy when Ryan meets a milestone he has been working so hard on—and even FaceTiming “ga-ga” so she can celebrate with us!
• listening to my 5 year old niece tell me how lucky I am that Ryan is my baby–and knowing how right she is!
• looking into Ryan’s eyes and realizing that he understands people in a way I never will.
• seeing Ryan’s smile light up a whole room.
• having the most walkers at our local Buddy Walk and realizing that our support group is absolutely amazing.
• receiving all of the uplifting articles about people with Down syndrome from everyone we know.
• dealing with normal day-to-day ups and downs of a typical toddler; because he is first and foremost, a toddler.
• advocating for Ryan so that he can live his best life–whatever that entails.
• not wanting to change a thing about Ryan because he is “down right perfect”!
• feeling like the luckiest mama in the world because Ryan is mine!

 

But don’t just take my word for it…come back and check out our Mom of Fames all month to hear what other moms who have kiddos with Down syndrome have to say! And please, if you know, tell us what Down syndrome means to you and your family!

To My Friends…Thank You for Making This Easier!

When I first learned that my son, Ryan, has Down syndrome there were so many different thoughts going through my head. *Will he be okay?*, *Will he have friends?*, *Will he be included?*, *Will he be happy?*

After we found out that he was otherwise healthy, one of the biggest concerns I had was about the support we’d receive. I have a great group of friends but this is something we had never experienced before so I didn’t know how everyone would handle it, including me. It’s a lot to deal with when you find out your child has special needs; you definitely need your support system to help you through it. Don’t get me wrong, he’s the best thing that has ever happened to me and I wouldn’t change a thing about him, but having friends that love and support us makes it so much easier. 

So to my friends (and family)…thank you for:

Loving and including Ryan

One of my biggest fears was that Ryan wouldn’t have meaningful relationships with my friends’ kids because he was different than them. This couldn’t be farther from the truth. My friends are amazing at loving and including Ryan. He is invited to every play date and party and while he is there they make sure he is treated just like everybody else (if not better!) Everybody comes over and makes sure Ryan is doing okay and if he can’t participate in something (because he hasn’t reached the milestone yet) they make sure he has something else that he can do. He loves being around people and it is so fun to see him interact with the kiddos and other adults.

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Always asking about him and his development

Along with Ryan’s diagnosis comes weekly therapies (occupational and physical) and extra doctor’s appointments. My friends always seem to remember to ask about how he is doing in them and what he has accomplished during them and it really means a lot. Sometimes I don’t feel like having OT and PT every week. I feel like the house always has to be clean and some days it just really disrupts his schedule. I know he needs it and he is thriving because of it, but it can honestly get really frustrating. When my friends ask how it’s going or cheer because Ryan met a new milestone, though, it really reminds me of my priorities and eases my frustration.

Still sharing your kids’ accomplishments

Another one of my fears was that my friends would feel bad bragging about their kiddos to me. I didn’t want the fact that Ryan was reaching milestones later deter them from telling me all the cool things that their children were doing. Luckily, my friends are very open and let me know when a new milestone has been reached. And just like they celebrate with us when Ryan succeeds, I love to celebrate with them!

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Going to fundraisers

One of the most generous ways my friends have found to support us is to donate to the Down Syndrome Guild. Whenever there are events that we invite them to, they show up without question. Our first event was for World Down Syndrome Day last year. I invited everyone on a Monday (when it was on Wednesday) and somehow we had over 30 people show up just to support Ryan. It was so amazing to see and really made us realize how lucky we are to have these people in our life.

Having the difficult conversations

Most of my friends’ kids are under 5 so I’m not sure we have crossed this bridge yet, but it is definitely coming. Eventually (probably sooner rather than later) their kiddos are going to realize that Ryan is different. They’re going to ask why he looks different or why he acts different than other kids his age. I know this isn’t going to be the easiest conversation for them to have and I want to thank them in advance for having it. And I know their kids will be just as supportive and kind as they all have been because they’re all amazing moms (and dads) and are raising amazing kids.

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Ryan is one lucky little boy to have you all in his life and I am one lucky woman to have you all as friends.

So…thank you from the bottom of my heart!

 

Secrets of a Stay at Home Mom

I have been a SAHM for 18 months now and I think I am just finally getting the hang of it (almost!). It’s a tough job with no “clock out” time, little adult interaction and no pay. Although this can be frustrating at times, it is also the most fulfilling job in the world with the added benefit of getting to see your child 24/7. Just like any job there are good days and there are bad days. I’ve found that by doing these 5 things I have a lot more of the good ones:

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Have a schedule…but don’t be afraid to break it!

We all know that kiddos thrive on schedules. I have tried to have Ryan on a schedule since he was a newborn (well really he had me on one then!) Now that he’s old enough to understand the schedule a little bit it is even more important though! We try to have a plan each day and honestly just having that plan makes the day go by quicker.

Right now our schedule looks something like: wake up, play, breakfast, songs, OT or PT (with the therapists or just with us), nap, lunch, play (or outing), nap, dada’s home—thank goodness!, dinner, play, bed). Some days we have swim in the morning and OT or PT in the afternoon but that gives you a general idea of what we do each day.

Even though we have a schedule we are not afraid to break it if something else will work better or we have the opportunity to do something fun. Now I try my best not to mess with Ryan’s naps, but anything else is fair game!

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Enjoy a “Mom’s Night Out” whenever possible

SAHMs are with their kiddos ALL day long. As amazing as that is, we also need a little time to ourselves. I think it is SO important to be able to get out and enjoy yourself without your kiddo sometimes. I try to plan a night out with friends at least once a month. I am able to just chat, eat without interruptions and not worry about a little one and everything he needs for a few hours. I feel so rejuvenated afterward so I think it’s just as important for Ryan as it is for me! It also gives him a little time with his dad which is also great for both of them!

Plan an outing at least once a week

I try to plan something fun (outside of the house) to do each week. Whether it’s going over to a friend’s house, going someplace cool (like the zoo), or just heading to Target and lunch (mama’s favorite!). I feel like this helps make the week go by faster because it is something we can look forward to and it also helps Ryan’s development. He loves being around other adults and other children and his curiosity is so peeked when we go someplace new!

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Pick up the phone

Being home with an 18 month old and 2 dogs can get a little lonely. Don’t get me wrong, they are all near me ALL the time, but none of them are the best communicators. This makes adult conversation so necessary throughout the day! So if your friends call PICK UP THE PHONE (obviously when the toddler is occupied and you’re able to). Or if your child is asleep, call someone just to talk! I have found the days are much more bearable when I am able to talk to friends throughout the day and not just wait for my husband to get home to have adult interaction. (I think he appreciates it too because then I don’t bombard him with questions and thoughts the second he walks in the door!)

Accept help

I had a very hard time with this (and still do sometimes)! I think stay at home moms think that since we are not “working” we shouldn’t need help throughout the day. But guess what, we need help too! If someone offers to help so you can run some errands (without a toddler whining) or so you can go to a doctor’s appointment SAY YES!

I also have a bad habit of thinking that since this is my “job” that I have to continue to do everything once my husband gets home. Again, this shouldn’t be the case! So if your husband gets home and offers to take the responsibility over so you can do something (or regain your sanity), SAY YES!

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No matter what kind of week we have, this boy makes being a SAHM worth it! Whether you’re also a stay-at-home mom or a working mom, what have you found helps you have a better week? Let us know in the comments!

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Activities To Promote Cognitive and Physical Development: Part 2

If you have been following Momfaming you know that my son Ryan has Down syndrome and because of that qualifies for Early On. This service is provided through our school district and includes an Occupational Therapist and a Physical Therapist coming to our house to work with him each week. These wonderful ladies give us so many great ideas and activities to help promote his physical and cognitive development.

Ryan is 16 months old (today, actually!) but is not necessarily working on milestones for a typical 16 month old. So to figure out if these activities are developmentally appropriate for your child, focus on the concepts they are working on as opposed to their specific age. So if you have a baby that is working on goals such as sitting up, mimicking, or using signals, check out my first post here. If you have an older baby (or toddler) working on things like standing, walking, or a pincer grasp you’re in the right place! Read on for the activities I have found the most helpful and Ryan has found the most fun! Let me know in the comments some activities you do to help your child meet these milestones, we’re always looking for new things to try!

~Erin

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Large Motor Practice – Standing

Right now we are really working on standing with Ryan. These are the three activities that we’ve been doing to help strengthen his legs and teach him how to pull himself up to stand:

1. Standing with Assistance – he starts out sitting in a chair with his knees bent and feet flat on the floor, then he puts his hands onto a walker (or other toy that is the correct height) and he pulls himself up with assistance. I always make sure I’m correcting his feet once he’s up so that he has a sturdy base and each time he goes to stand I say the words “stand up” or just “up” so that he starts to learn the word that correlates to the action.
2. Keep Toys Out of Reach – once Ryan started pulling himself up to stand without much assistance we started putting his toys (and books) up on the couch or ottoman instead of on the ground. This way if he wants to play with his toys/read his books he not only has to pull himself up, but he also has to stand there while he plays.
3. Encourage “Cruising” – now that Ryan is continuing to pull himself up and standing to play for a few minutes we are starting to try to get him to “cruise” along the couch by moving the toys he wants to play with a little to his left or right. He needs a lot of support while he moves right now but hopefully soon he will start to do it more independently.

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Large Motor Practice – Crawling

Ryan is now crawling around the house like a champ! Now that he is comfortable doing this we are working on crawling onto things. These activities are helping him practice this:

1. Start with the Couch – I know what you’re thinking, the couch cushion again!? But I’m telling you it works! We just pull a cushion off of the couch and put it on the ground right in front. We then put one of his favorite toys onto the couch where he can see it. When we first started we had to first put the toy on the cushion so he would crawl onto that; then move it onto the couch where the cushion used to be and so on so that he wouldn’t get discouraged. Now that he’s more comfortable doing it we can just put the toy high up on the couch and he crawls to get it immediately.
2. Crawling Onto Your Lap – once he got the hang of climbing onto the couch I started to encourage him to crawl all the way into my lap instead of just grabbing him and putting him in my lap when he crawls to me.
3. Finally…the Stairs – climbing up the stairs is eventually the goal of all of this so once you feel your child is ready, make them try it! When Ryan first started I had to really assist him (by kneeling right behind him so he could push off of my legs and encouraging him to put his hands onto the next stair). Then we moved on to helping him bend his knees and lift one leg up at a time (to do this, just gently squeeze the hip of the knee you want him to bend and his natural reflex will be to lift that knee up). He is still not doing the stairs independently but he crawls (with some assistance) up them every time we go upstairs and he is definitely getting better each time!

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Fine Motor Practice

Fine motor skills are definitely harder for Ryan to master. Luckily, these activities are fun so he likes to practice often!

1. Put On/Take Off – we use a toy (like the ring towers below) and I say “take off” and have him take the rings off one at a time (sometimes he just knocks the whole thing over so that they all fall off but I encourage him to do it one at a time because that takes more fine motor control). Then I have him pick up one of the rings while I hold the base out and instruct him to “put on”. I make sure that he is successful by moving the base around until he is able to easily place the ring on it. Then we cheer like he just finished a marathon so that he knows that he did it right. This is also great because along with practicing fine motor skills it also helps him start to follow simple directions.
2. Put In/Take Out – we started to introduce this concept with a large bin that had several small toys in it. I would have Ryan put his hand in the bin and say “take out” each time he would reach in and bring out a toy. Then we would empty the bin and encourage him to put the toys back in by handing him a toy one at a time, holding the bin under his hand and saying “put in” (if a child is having trouble releasing the toy make sure to rest his/her arm on the bin and it will cause him to drop the toy because of a reflex). After repeating this many times with help he is beginning to independently put toys in when asked. Next step, helping mom clean up!
3. Practice with Food – picking up food and putting it into our mouths takes a lot of fine motor control. We started to practice this by holding a piece of food in our palm and having him scoop it up with all of his fingers. Now we hand him a piece of food using our pincer grasp (thumb and pointer finger) which encourages him to grab it the same way. Right now he is using his middle finger along with his thumb and pointer but that is okay at this point!

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Language Development

1. Give Choices – to add some language to play time we have started to give Ryan choices on what he wants to use. For example, when we are reading him stories we hold up 2 books and ask him to choose which one he wants us to read. He will point to one, so we read it, and when we are done reading we give him 2 new choices. We do the same for his toys but he isn’t always as decisive with this. To help him understand the name for each toy I made him a book with pictures of his favorite toys in it and what we call them (make sure you are calling it the same thing each time so that he can start to associate the correct name with each toy). We show him the pictures and ask him to point to which one he wants to play with and hand him the toy he points to (see picture below).
2. Use Signs – since Ryan doesn’t have very many words yet we have started to introduce signs. We started with “more” and have moved on to “all done”, “open”, and “want/give”. Whenever we are playing we make sure to make the sign while saying the word several times and encourage him to try to do it himself. If he is having a hard time we will move his hands with ours but we try not to do this too much.
3. Simple Directions – now that Ryan is understanding a lot of what we’re saying we ask him to follow simple directions. This also reiterates labels for things he sees all the time (ball, mama, doggy, etc.). A game we play a lot is “give the ball to mama” or “give the block to dada” to see if he will bring the correct toy to the correct person.

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Foster Independence

1. Crawling Everywhere – now that Ryan is crawling so easily we don’t pick him up and carry him around as much. When it’s time to eat, we walk into the dining room and tell him to come with us. It may take a little longer but eventually that smiling face peeks around the corner and joins us. We do this as often as we can and he has really started to get the hang of it and follows us pretty easily.
2. Playing Independently – although these are all activities that involve you playing with your child I also encourage you to allow them to play independently (it is actually a milestone they need to reach!) Ryan loves to sit on the ground and “read” his books or play with his toys even when we aren’t doing it with him. He’ll always make sure we are close and checks in with us but he’s really good at playing by himself.

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Down Syndrome Awareness Month

October is Down syndrome awareness month. I didn’t even know this existed a year ago because I honestly didn’t know much about Down syndrome back then. But I do now because of my amazing son, Ryan. Ryan was born in October so you would think that I would have actually known about this last October, but our introduction into the DS world wasn’t as simple as all of that. You see we went four months without even knowing that Ryan had Down syndrome. Weird, right? Let me rewind…

Meet Ryan

Ryan was born on Saturday, October 14th at 1:18 am. He was a perfect 7 lbs 2 oz and 20 inches long. He was 11 days early but came into the world without any problems. We were immediately in love and cherished every minute with him. He didn’t have any health issues besides having to have a hearing test (which he passed) when he was a few months old because he didn’t pass the one at the hospital. He was a pretty easy going baby who was a great sleeper and hit his milestones either early or on time. Fast forward to our 4 month doctor’s appointment… 

The Doctor’s Appointment

We go to a practice that has several pediatricians and this was our first time seeing this particular one. Everything was going great…his heart sounded good, his lungs sounded good, he was babbling for the doctor…until she excused herself to use the bathroom. She was gone for quite a while, which I thought was weird but didn’t really think much more of it at the time. When she came back she said, “does he always stick his tongue out like that”. I said “yes, he does stick his tongue out a lot, but he’s doing it less than he used to.” Then she very casually said, “I think we may need to get him tested for Down syndrome.” I felt my heart fall to my stomach and needed to sit down so that I didn’t drop Ryan. She went on, “let me explain. He has almond shaped eyes and sticks his tongue out which are both characteristics of Down syndrome. He doesn’t have many other traits and I feel in my heart that he doesn’t have it, but I think it’s something we need to get checked out to know for sure”. I was at the appointment alone and immediately called my mom when I got in the car. I’m not sure she could understand much through my tears but she definitely heard the words “Down syndrome”. She eventually calmed me down and we made it home, where she met me to calm me down even more. My husband, who was at work, kept texting me about the appointment and how it went so I told him to call me when he got a chance. We spoke and he left work right away so that we could take Ryan to get the blood test.

The Call

The results of the blood test took a week to come back and it was the longest week of my life. I tried to stay away from Google, but obviously gave in and looked at a few things. I spent the week staring at Ryan and going back and forth from “there’s no way in hell he has this” to “okay, maybe I see it”. I think throughout the week I eventually came to terms with the fact that he really might have it, which made the phone call slightly easier. It was a Friday and the doctor called at 7:00 at night. She told me that he does have Down syndrome and some other things that I honestly don’t remember now. When I hung up I told my husband and we took turns crying and comforting each other. At one point we were both crying and Ryan, who was on his tummy, looked at us, smiled, and rolled over (the first time he had done that since he was tiny). I think it was his way of saying, “I’m good, what’s wrong with you guys!?”

The Journey (so far)

The next couple of weeks were a blur. We had to tell all of our friends and family and we had to sort through our own emotions. As much as I love my baby and knew we were all going to be okay there was still a little bit of grieving to do. Grieving for the future, really. The plans I had already made for him in my mind that will now look a little different. 

We also had to follow up with the doctor and get him into several other specialists. He had to see a cardiologist—even though his heart had always sounded fine, heart problems are very common in babies with DS so he needed an EKG and an echocardiogram to be sure. We also got an appointment with an ophthalmologist (because vision problems are also common) and have to see a pediatric dentist by the time he is 1 to try to help with any dental issues. He also had to go get his blood drawn to check for several different things (which he’ll have to do every year for the rest of his life) and we made an appointment to see a genetic specialist. On top of those, I had to get in touch with our school district to start with Early On (a special education program for children birth through 3). So far all of the appointments have gone great and we love the Occupational and Physical Therapist who come to our house each week through Early On.

The Point

So why am I telling you this long winded story? For several reasons, really. One, if you have been reading this blog or looking at our Facebook page, you have seen Ryan a lot. Along with seeing him I wanted you to get to “meet” him too. Second, since it is Down syndrome awareness month, I wanted to make everyone AWARE. This is what Down syndrome looks like for us. This is our story and from what we’ve learned it’s not a very common one. Finally, and most importantly, if telling our story helps even one other family going through the same thing it is worth it. Obviously Down syndrome has changed our family, but for the BETTER. It was definitely hard when we first found out and we know that there will be bumps along the way but Ryan is an amazing little boy who has a very “normal” life. He does the same things as other babies his age, he just does them a little later and has a few more appointments to go to. We know we were chosen to be his parents for a reason, and we will fight to get him everything he needs to succeed in life. Trust me, he’s worth it!

~Erin