Down Syndrome Awareness — Gotta Have Its AND How I Used Its!

I was just over at Down Syndrome New Mama (http://downsyndromenewmama.blogspot.com/2009/06/10-things-mamas-gotta-have.html) and she had a great post about what every new mama needs based on her experience. Given we’re all different mamas — new and old — and we have all different children — with and without Down syndrome at different stages of development and with different needs and challenges — I decided that I’d throw in my own $0.02. But, as I commented I realized, once again, that I had more weighty stuff to say than the comment box could bear. So, here I am again, Swiper the Fox, swiping post ideas from other Moms — Brian would say “Piper no Piping” — and putting my own unique spin on it.

In my defense, I hope you find my approach and point of view to be a little different given I have twins with Down syndrome, I don’t have an endless supply of money (anymore) to purchase all the fancy stuff out there and my Must Haves will certainly be at least slightly different than hers and yours and that Mama’s over there too. Personally, I think everyone should go ahead and swipe her post idea, blog on and link up so there’s a wealth of information for those truly new mamas of babies who happen to have been blessed with that extra 21st chromosome (aka Down syndrome). Because, the truth is, Down syndrome or not, every child is different and parenthood is NOT a trip to Rome. Every one’s trip is different and what works for one may not work for another. So here goes:

For me, a lot of those really early years with “the boys” (LOL, as if 4 years into this isn’t still early in the game) was ad-libbing, concocting and/or adapting because much of what was out there, I found, didn’t quite work for our specific situation… for my child with Down syndrome, or my TWINS with Down syndrome and/or didn’t quite address the particular issue/developmental hiccup or personality of said child/children. And guess what, I’m STILL doing that — ad-libbing, concocting and adapting — to get just what I want and just what the boys really need.

Anyway, I’m going to come at this from perhaps a slightly different angle. I’m going to identify situations and then solutions and then mention a product or two that facilitated the process. FOR ME! Note: I won’t belabor the “for me” thing too much more but that’s just my disclaimer. My way of saying this worked for me. Nothing works for everyone but I hope something here works for at least one or some of you…

Belly time: Yeah, none of my 3 children — with or without Down syndrome — liked belly time. And, falling behind those big thick rounded Boppies (I bought one for my daughter and had one handed down to me when I had twins) was frustrating for me and for the boys. Required too many readjustments. So, I tossed aside the Boppy and did a tight roll-up of one of those baby-soft blankies that fit just under their armpits. As they grew, I selected a slightly bigger blanket and refolded it so it was just the right height and thickness for their little armpits, arms and elbows. This way I wasn’t restricting them from accidentally testing their rolling mechanism. That is, they’d lean on the blankie and lift up their shaky little heads and then, because everyone knows baby heads are heavier than just about the whole rest of their bodies, they’d sometimes roll to the left or right with that stunned look of surprise on their faces. Over and over again. But, they were lifting and they were rolling. Two really good exercises… experiences… that were possible because of the ever-so-slight incline of an inexpensive rolled up blanket. The Boppy, with it’s puffy rounded shape, didn’t actually allow them to freely, if not accidentally, roll to the side, push up on their short little hands and arms or move forward if the strength, agility and desire overtook them. The right-sized blankie didn’t block them from doing so. Propping to encourage lifting the head while building the body’s core muscles is good. So is rolling! So, I was killing these two developmental milestones with one very soft and fluffy stone… so to speak. Mind you, I used the Boppy later and highly recommend it. It just wasn’t useful for me early on (not for breastfeeding either… remember, I had two!) I just thought I’d throw out a very inexpensive and developmentally sound alternative.

Visual Stimulation & Motivation: Research shows that babies are intrigued with faces. And, while Mommy’s face is the most interesting face of all for them, at least initially if not forever and ever — my guys are still intent on studying my face, facial expressions, the movement of my eyes and eyebrows and now my mouth for letter formation and language development, etc. — THEIR own faces are also HUGELY entertaining and developmentally appropriate. So, I bought one of those cheap, lightweight, back-of-the-door, plastic-framed mirrors at Target and angled that lengthwise against the couch on the floor with them propped in front of it on their rolled up blankies. You never saw two kids more motivated to pick up their heads to get a look at their own beautiful little baby faces staring back at them in the mirror. Many an active, heads-up hour was spent in this manner. It also started them scooching… they had to get to that cute little baby over there. I guess I could have saved the $ on the mirror and just faced them toward each other — being identical twins and all, LOL — but the guy in the mirror was so good at mimicking and rewarding them with feedback on their own facial and physical movements.



Changing Time: OK, I admit it, I changed my kids on the floor using one of those old fashioned cloth diapers as a changing pad. If you haven’t already heard, I have TWINS so I was always watching over my shoulder for what the other guy was doing while I was busy with the first. Personally, I didn’t put any of my babies anywhere they could fall from even though I was always holding on. I’d heard too many fell-off-the-changing-table and broke the blah blah blah stories. I live a Murphy’s Law kind of life. If it’s going to happen, it’ll happen to me. (No, this is not pessimism. It’s reality! I know we’ve all heard that from the pessimists we’ve met, but, look at me! I have identical twins with Down syndrome — that’s a 1:1,000,000 kind of chance thing.) Besides the safety issues, I also found that my abdominal and back muscles were heartily strained after pregnancy (especially after carrying twins and having the c-section but that’s another story) so the slight lean over the changing table hurt way more than sitting legs outstretched on the floor with baby in between. Good stretching for mama and totally safe for baby. Both babies! So, what’s my product recommendation? Let me tell you, I STILL have about 20 of those old fashioned, mega-padded cloth diapers. THAT’S a product I highly recommend! They sell them cheap in multi-packs and they make great burpy cloths, head rests, diaper changing pads, bed/crib pads, little blankies when you forget that you pulled the real blankie out of the diaper bag to wash it… You name it. And, the best TOY I personally found for keeping their interest during changes is absolutely free and every new mama comes with one…. your FACE! As I said above, developmentally, this is just what they want to see and it’s not like you’re doing something else at this particular diaper-changing juncture. I had my baby focus on me and my face during changing time by making faces and talking motherese. Yeah, having an interesting toy hanging on the wall might have been cool but I wasn’t always near the wall or even in the same place every time, I didn’t have the spare change to buy the next new-fangled, short-lived toy and, selfishly, I wanted some of their undivided attention myself. Not that Mommy’s face ever got boring for them (still!) but when I needed to keep their busy little hands out of their dirty little diaps, any favorite rattle that makes noise and has bold primary colors and simple geometric designs is visually interesting for them and entertaining (read: distracting) to boot. Works on their grasp, independent use of the limbs, crossing midline, passing an object from one hand to the other, etc. All good fine motor skills. Sometimes the old-fashioned stuff works best. And, finally, instead of the Diaper Genie, I prefer the Diaper Champ. It uses regular kitchen-sized trash bags because I don’t know about you but I never got to BabiesRUs often enough nor desired to spend the money to buy the designer Diaper Genie linked refills. With the Diaper Champ, any old kitchen garbage bag will do and, yes, the compartment is sealed so it doesn’t smell. I also heard from two seasoned mommies that the Diaper Genie wrapped stuff up so tight that not immediately disposing of the contents bread? breeded? resulted in maggots in the tightly-twisted, Diaper-Genie foul diaps. That was gross enough for me to start dumping our poopy diaps in the regular trash which gets disposed of daily! So, I’m not sure what I’m recommending or if I’m not recommending anything. But, I have a gently used Diaper Champ available… LOL.

Propped Sitting: Here’s where I used those two Boppies. That’s right TWO at once… for ONE kid. My guys were big for twins (nearly 5 lbs at birth despite being born 8 weeks premature) and by the time they were ready to practice sitting, ONE Boppy was too short and didn’t offer sufficient, if any at all, back support. Two Boppies stacked on top of each other gave them soft support further up the trunk of their bodies but not such firm support that they didn’t feel the need to engage their own abdominal muscles to steady themselves. They could sit without completely slumping… the way they did with just one Boppy. Caveat: not that you’d leave your child unattended in a sitting position, but just know that the top boppy would occasionally slide off the bottom one. I put it up against the couch to minimize this occurrence. The down side of this was that baby might slump enough sideways or backways to tip over. The upside was that he had a soft landing. So, there you go.

By the way, I heard soooo many parents swear by those Bumble seats to help with early sitting skills and as a booster seat at the table. Again, EVERY child with or without Down syndrome is different so my personal experience was this…. The boys were big and had no eating issues so they were “typical” in size to their peers without Down syndrome but given they were slightly delayed in the sitting skills, by the time they were working on independent sitting they were already too big and chunky-legged for the Bumble. If this doesn’t describe your child’s physical stature, it may work very well for you. But, if you’re looking to get one, check ebay, Craigslist and/or Freecycle before you go to the stores. Most mothers I know who used them say they generally have a short use-life (versus shelf-life) and can be expensive, especially for twins. Moms are always passing these on for a fraction of the original cost.


Sleepy-time Monitoring: Oh all of us mothers, new or otherwise, constantly worry about our babies when they sleep. It’s part of the maternal instinct which, I’m told by more seasoned moms (read: moms with teens) never goes away, so resign yourself to never getting a good night’s sleep again but don’t give up looking for something/anything that helps. Now, I’m not a fan of stereotyping so this next part sort of disagrees with my basic sense of approaching every child as an individual, but I understand that sleep apnea is statistically more common in children with Down syndrome because of the typically smaller oral cavity and normal-sized or enlarged tonsils/adenoids (in that small mouth), coupled with the potential for lower muscle tone (which could be the result of Down syndrome and/or just plain old genetics). In a small mouth with low muscle tone, crowded with big tonsils, sleep apnea is just a tad more likely. In any of us, being asleep and laying on our backs relaxes the oral motor muscles in the back of the throat such that the tongue can drop back, touch the big tonsils and obstruct the airway. Happened to my hubby every night until he got his CPAP machine for sleep apnea. (BTW – it also runs in families — DS or not — and can also be related to body type too… So it’s not just a DS thing.) Obstructive Sleep Apnea (OSA) is essentially repetitive and disruptive stop-breathing episodes that occur throughout the night. And, it’s a scary experience for every mother. My guys had Obstructive Sleep Apnea and recently underwent successful intracapsular tonsillectomies/adenoidectomies to address/correct the situation (http://walkonthehappyside.blogspot.com/2009/05/down-syndrome-awareness-our.html). But, before this recent surgical adventure, I sure do wish I’d had an audio/video monitor when the boys were babies for the breathing reason along with all the other reasons we moms want to see what’s going on. “Are they trapped in the bed rail? Did they fall out of the crib? Are they on top of each other? Under the blankets? Face down in the bed? Rolled over and can’t get up?” Yes, we ALL fear those things far too often. But, you know what? My Fisher Price Lights and Sounds baby monitor that I’ve used since my old soul was a baby worked for all this sleepy time monitoring because the sound sensitivity was incredible. I can hear them move. I can hear them stir. I can hear them breathing! It’s portable! It’s cheap! AND it’s still doing double time in their bedroom every single day. Nearly 3,000 days of monitoring and it’s STILL working wonderfully! There’s something to be said for an inexpensive, overused and abused monitor working for more than 7 years despite being tossed about our lives and house.

Yes, I think I would have loved a video monitor for when they were babies and even now. Black and white OR color… In truth, it doesn’t really matter if you can see that baby in full color but, I guess, the full-color would be nice if you have the money. I didn’t! Don’t! BUT, if I did, for ME, I’d go with the kind that has a portable hand-carried, clip-on-your-belt-and-go (as in go to the far reaches of the backyard or garage and still produce a clear I-can-see-his-chest-rise-and-fall-with-every-breath image) screen with the flexibility of hooking up to my television on the rare occasion that I was stationary (folding laundry or blogging) during nap time. That would be the best solution for ME. After all, I wouldn’t want to be tied down to spending nap time in one room watching a cumbersome video monitor, crowding my already cluttered counter top as I run frantic around the house trying to get all the unattended chores attended to during that one potentially short little nap. Plus, that expensive video monitor better have a movable camera with a wide-angle setting so it can double as a kid-tender for the playroom as the boys get a bit older. Then I could let them play in another room without eyes-on direct supervision (they’re 4 now) to see how they interact independent of adult supervision. Heck, as long as I’m spending the money(and dreaming), I might even look for one with an indoor/outdoor camera so that, ultimately, I could monitor backyard activities or the swimming pool to make sure no one was ever in it without up-close-and-personal, hands-on adult supervision. But, now I’m talking about an advanced-function, more expensive audio/visual monitoring system which is unnecessary for babies… if not a nice luxury. The truth is, when they’re babies we just want and need to monitor their sleep. And, an inexpensive high-quality-audio baby monitor — so you can hear their breathing — does the trick just fine!

BED SAFETY: My boys did a crib for about 6 weeks and then were too big for it together and wouldn’t sleep apart and and and. They slept in the big king-sized bed with bed rails. Mommy on one side, Daddy on the other. A lot of experts and many mommies would say this is taboo. And, just as many, if not more do it. So, I’m going to be honest and tell you I did. Do! And, I still use the bed rails on the bed and when the boys fall asleep on the couches, there too. I have 5 of the same kind after throwing away two that didn’t work/broke on us. They are Safety 1st – white plastic, tall, with blue and green trim and mesh netting. Not sure if they sell them anymore but these were the only ones that worked for us. For the height of our bed, couch, boys etc. this particular model fit the bill. Might be a trial and error thing. Might just be the perfect, versatile product. And, safety gate will travel, as it’s foldable and compact.

Containment: These big giant interlocking, make ’em as big or as small as you need ’em Superyard XT gates were a life saver. Are a life saver! I could NOT put my two little guys in the Graco pack and play. Waaay too small. I have one that hasn’t been used since my old soul graduated from it. Besides, containing even one in such a small area always felt more like kennelling or caging. But, using two sets of these interlocking gates and two walls made safe a HUGE area that the boys could terrorize (as you can see in the picture they did… my little climbers). I couldn’t make the whole house safe and keep track of two so I made large areas safe and contained them. It worked beautifully until Michael, the future engineer, figured out how to unclip the overlapping gates. I also hung little toys, mirrors, noise-makers and rattles all over the gate for stimulation. I didn’t go out and buy these items separately. I borrowed them from my floor-mat, jungle gyms once they’d outgrown those. The gates were also great, once the boys were set free, to contain fragile and/or potentially dangerous items like Christmas trees. And, without these gates, the beach would be a living nightmare. But, two sets joined together contain the whole family, beach blanket, sun shelter, toys and beach chairs for 5+ people. Having only one point of entry makes it easier to watch the flock out in the wilderness. Like the shepherd, I guard the gate and, once again, let the boys and Olivia have at it. By the way, the table bumpers in the picture above were a serious life saver as well. I still have them on that family-sized, heavy-duty kitchen farm table that I picked up from someone who no longer wanted/needed it (read: garbage-picked). I cut the legs so the table top was just about waist-height for the boys (to help with pulling up and cruising without tipping), sanded and refinished the top, added the bumpers and it now doubles as a perfect-heighted craft and activity table for them. They can destroy it and I don’t care. But they can’t tip it over. Works for me.

I could on go touting more fantastic products, tricks and/or methods that worked for us and how I used them with a twist… But I won’t. I fear neither you nor my kids will tolerate any more. I know I didn’t do 10 things but they say you’ve got to leave people wanting to come back for more. Not sure I’ve done that but I know — FOR ME — time is of the essence in my crazy mama life and nothing can take too much of my time or I won’t do it again. So, I’ll hit some other situations/milestones another time. Or, if there’s a specific developmental area you’re working on and you want to know what I used and how I’m tackling it, post a comment and/or send me an email and I’ll respond. (Spamming teaches us to publicly post our email addresses in this cryptic format: marshall together with hagan, no spaces, then the at sign followed by verizon and the dot plus com.)

I’m also thinking you should all write your own “Gotta Have It” blog posts and link your post to mine and I’ll link mine to yours and then the blogosphere will have some really useful hands-on, money-saving tips and product recommendations for all of us mothers of children with and without Down syndrome, with and without developmental delays, all with their very own flavor, talents and challenges…. And, I won’t be the only one stealing post ideas!

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About Maggie

I'm a stay-at-home mother of 3 children including a 15-year-old daughter, the Old Soul, and 11-year-old identical twin boys who've been blessed with an extra 21st chromosome (aka: Down Syndrome). I happily spend my time doing all that I can do -- breaking the proverbial box wide open -- to foster my children's development and then sharing what I learn with you through this blog.
This entry was posted in adenoidectomy, child care, child development, disrupted sleep, Down syndrome, Down Syndrome Advocacy, obstructive sleep apnea, OSA, products, tonsillectomy. Bookmark the permalink.

6 Responses to Down Syndrome Awareness — Gotta Have Its AND How I Used Its!

  1. I love some of these ideas. I think I'm going to get one of those mirrors today!!! Thank you!!!

  2. ds.mama says:

    We never had any luck with the Bumbo either…she just always seems uncomforatbale in it. The rolled up blankie trick sounds good and I am going to try it because the boppy is still a little big for her during tummy time.I'm linking this post to the DSNM Mama's Gotta Have It. Great idea you had!

  3. starrlife says:

    We were very lucky, our EI program had a Bumbo seat and they lent it to us briefly so we didn't have to buy something we didn't need for long! Also, our neighbors had a floor mirror- you are so smart to think of it on your own! I was fabulous- we'd still use it if they didn't ask for it back. Watching faces and being visual learners is one of the reasons(excuses) I use for letting her watch more tv/movies than I normally would. She watches and learns- I can almost see it happen and ex. Little Bear repeats so she almost memorizes social scenarios that are very healthy. This comment would be too long if I kept agreeing with you! One thing we did- very simple is early on give her access to her own CD player (obviously copying her CD's on the computer since she scratched the heck out of them). It gave her control, repetition for aural learning which was more difficult and speech patterns and paces that supported max learning (Julie Andrews diction is superb). Great post- thanks.

  4. MaggieMae says:

    OK, thanks for all the comments. LOVE THEM! Keep them coming! And, I'm cracking up at my own "bumble". See, I never actually had one. Maybe if I had I'd have called it by the right name. So, here's the correction: The molded little booster chair I wrote about under Propping Up is actually called a BUMBO not a Bumble as I said it. If you google mine, you might come up empty-handed or worse. LOL!

  5. Cari says:

    Great post! As Mom's we all have to find our own way, we all have our own journey. No two children are alike, so why would the "standard" tricks and gizmos work for every child. As Moms we just have to do the best we can to keep our sanity!

  6. Ria says:

    Great post. I created my own top 10 and wanted to link it to yours but don't know how. So I mentioned your blog in my post instead. My list is more similar to DS New Mama's. I really like your take on the top 10. http://billandria.blogspot.com/2009/06/top-10-baby-gotta-haves.html

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