Fast Forward!

My goodness! Things have definitely changed in our world since the last time I updated this blog.  Parker is now 18 months old and is happy, healthy, growing little boy.   

Parker talking on his phone on Christmas morning

His development has blossomed so much since the last update.  Back in August, his main mode of transportation was the booty-scoot.  Although it’s very funny and cute to watch, we’ve known it wasn’t the best way for him to get around, so we did everything we could over the past few months to get him to crawl and I can say that as of about 4 weeks ago, his preferred method of transportation is crawling.  What a relief!  Crawling is such an important milestone and can even affect a child’s handwriting!  I’d be lying if I said I wasn’t stressing about him learning to crawl, because I most definitely was.  We did many things to encourage him to crawl from modeling to actually putting him in position for crawling by bending his legs while on his tummy.  One therapy toy that helped tremendously was a two-side wedge toy for the floor.  It has a flat piece in the middle, between the two wedges, so it's easy to crawl from one side to the other in an up and down motion. His early intervention teacher allowed us to borrow it and it really got him interested in being on his belly and moving around.  He crawled on it a lot.  Parker started pulling to stand around 11 months, but at 15 months he actually started pulling up on furniture and "cruising" (walking while holding onto stationary object).  Needless to say, my coffee-table in the living room became empty at that point.

This is the first toy that Parker pulled to stand on (at around 11 months).  It's an old toy and is a hand-me-down from some sweet friends of ours, so I'm not sure if you can still purchase it in a store.  If you see one for sell, buy it! It's great for any child!

 Parker also started to stand up without support and walk while holding our hands about  4 weeks ago (around 16 months).  We are presently working on teaching him to walk while holding one hand or while holding onto an object with one hand. He got a grocery cart for Christmas and has started to push it around.  We put weights in the bottom of it so that it would be harder to push and would run out from under him as he tries to walk.  He turned 18 months on Saturday, January 21^st and on the evening of Sunday, January 22^nd, he took his first two steps (without support) with mommy and daddy watching!! We were pumped. He’s been trying to take steps everyday since.  We tried treadmill therapy to encourage him with walking and also because his Physical Therapist said it would help him get the timing of his steps down.  The University of Michigan has completed years of research on treadmill therapy, specifically for kids with DS, and has had great results with it, so we gave it a try.  Parker loved it in the beginning (around 11 months), but now has become bored with it.  We think he’s lost interest in it because he’s very independent and doesn’t like us holding him up on the treadmill because he’d rather do it himself.  So, we’ve kind of phased it out at this point.  I’ll post a link to the research done by University of Michigan.

Parker with his grocery cart on Christmas Day.

Parker’s communication skills have also taken a big leap.  He said his first two-word phrase at 17 months and it was “Get up!”.  He signed his first two-word phrase, which was "more cracker" about 2 weeks before he verbally said "Get up!".  If I had to put a number on it, I’d say he has about 20 words and 6 or 7 signs that he uses regularly.  He does a lot of jabbering and pointing, and we know he has lots to say!  He is rarely quiet (just like his daddy).

I can’t stress enough how much of a blessing Parker is to our lives.   He always brightens my day and I just can’t imagine our family without him.  I often ask my husband what we did before we had Parker because he’s such a joy to us.  I know we’re going to have challenges and times of struggle in the future as we have already, but please don’t ever think that having a child with Down Syndrome is a burden.  When Andy and I look at Parker, we don't see "Down Syndrome", we see our perfect little boy.

Link to University of Michigan's treadmill research:

http://ns.umich.edu/new/releases/6142 

real life

I feel terrible for neglecting this blog for the past four months, but I just simply have not had the chance to sit down and write anything.  I've written things down that I felt like God was leading me to add to my blog, but those ideas never made it here for some reason, so I guess it wasn't meant to be.  Parker turned 1 on July 21st, which is so hard to believe! We had a big celebration and Parker enjoyed his cake, but he was feeling a little under the weather the day of his party, so he wasn't really himself, which was sad because this was only his second time to be sick and of course it would be the weekend of his first birthday party.

Parker's first birthday milestone also meant lots of check-ups with doctors and a hearing evaluation.  He got good reports from his cardiologist and hematologist and was released from both of them, so as of now we don't have anymore scheduled visits at Blair Batson. We are praising God for that news! He also passed his hearing evaluation, which was another praise.  Parker started pulling up about a month ago and is able to pull up to his knees on pretty much anything that's stable enough for him to grab and hold onto.  If he's touch mommy or daddy, he will pull up to his feet and will take a few steps as long as he's holding onto us.  He's still army-crawling and while he does get up on hands and knees, he doesn't move while on them.  He'll flop down to his belly and go back to his army-crawl. Everyone tells us that he might skip crawling, so we'll see.

This time last year, I remember feeling so defeated as we had just visited the cardiologist, the geneticist and were lined up to see a hematologist.  I remember telling Andy on our way home from visiting the cardiologist and geneticist that when I first found out that we were expecting that I had imagined us having our baby and going home from the hospital to go on about our lives as before, which did not happen.  Parker's first year of life was tough for us in some ways, but we have lots to be thankful for.  Right now, Parker's functioning just about like every other 12/13 month old we know.  He sleeps all night.  He's happy.  He doesn't want to eat any vegetable besides sweet potatoes.  He calls for Momma and Da-da.  He loves ice cream and loves any variation of a ball, especially if his daddy is tossing it to him.  He's definitely all boy!

In our ever-changing lives, God does not change.  He is always good and His will is always best.  Those truths were tough for me to grasp in March of 2010 when we found out about Parker's extra chromosome.  One year and some months later, I can't imagine our family any other way.  If I've learned anything since that time, it's the fact that as a Christ-follower, we must be thankful to Him in all things and in all circumstances.  When things are good for us and when things are what we might call "bad".  Jesus said "“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” John 16:32-33.  Trouble's going to come as long as we are in this world.  Peace is always available through Christ. 

A sneak peak into early intervention...

As many people close to us know, Parker receives early intervention services from the Children's Center for Communication and Development at USM.  When we mention that on Thursday afternoons we'll be at our house so Parker's teacher and therapist can come by for their weekly visit, many people ask, "What exactly do they do?" Well, I usually reply by saying that they really come to teach Andy and I new things, but I was thinking tonight as I looked around at the new toys we got yesterday that maybe I should "demystify" this therapy we've been talking about.  Because really, unless you've experienced it, you really don't know what we're talking about or describing.   Speech Therapy is my profession and I wasn't even sure what all would take place when we first ventured out into this world of early intervention, simply because I had very little experience with the birth to 3 population.  But here we are, 8 months into it and we've learned a whole lot so far.  So, I'd like to share a little about our experience because the things we're learning aren't just things that benefit a child with special needs.  Most everything we've learned will benefit any baby and any parent/caregiver of an infant.

So here goes:

The first thing I'd like to introduce is this:

Magic Pants

a blue pair of Magic Pants in action

These are Parker's "Magic Pants".  They might just look like spandex shorts that were stitched incorrectly, but they actually serve a pretty neat purpose.  Parker wears these (under the direction of his Physical Therapist) during any floor-time activity (fancy way of saying--'playing on the floor').  These "Magic Pants" help to keep Parker's hips together and supported so that he doesn't get into the habit of allowing his hips to flair outward during activities such as crawling, sitting, etc.  Since all developmental skills build up to other developmental skills, it's important for a child with special needs to stop bad habits in their tracks because a bad habit of flaired hips (outward facing knees) during tummy-time just means that the habit will carry-over to sitting and crawling, making those higher-level motor skills more difficult to achieve, especially if the child has low muscle tone.  This concept also factors into the reason we don't use the famed Bumbo seat.  When a child sits in the Bumbo seat, his legs are spaced apart by the middle part of the chair and his bottom is at a lower elevation than his legs, which means his abs are in constant flexion.  Our PT explained it to us by having us imagine ourselves in the same position.  Who wants to sit with their abs flexing continuously?  That position doesn't seem very comfortable to me.  Now, I'm not saying that you should throw your Bumbo seat out or anything like that.   Just do your research and make an informed decision on your own.  We did the same and decided that we would not use the Bumbo seat.  I will say this...We did use the Bumbo seat for a brief period of time before we figured out how to support Parker properly in the high chair because it provided such awesome face-to-face interaction during feeding and he was just too small at the time for the high chair.  I put two folded receiving blankets in the seat of the chair though so that Parker's bottom wouldn't be lower than his legs, which leads me to the next gem of early intervention:

The Highchair Helper

A closer shot of the Highchair Helper

The highchair helper!

The highchair helper is new to our house and we couldn't be more happy about it.  Before the highchair helper, I was using a small quilt and several hand towels to position Parker correctly in his high chair.  His PT helped us to understand that a baby needs correct support in the highchair so that he can begin to reach out and grab his spoon or finger-foods when the time arises.  Also, you don't want your baby leaning over on the side of the highchair while he's trying to swallow (choking hazard!!).  The highchair helper is made out of foam, so it's comfy for Parker and it hugs him in all the right places so that he's sitting up perfectly.  It's so cute to watch him prop his elbows on it, just like a little man!  Also, it has a removable terry-cloth cover that's machine washable, which is a necessity.  

To stay on the topic of feeding, I'd like to introduce two special cups.  The first cup pictured is one of our newer toys and it provides the same experience as cup-drinking, but you can monitor the flow  of the liquid coming from the cup with the turn of the lid and it is made so that the child gets the tactile cue of the liquid touching the lips without spilling it all over himself or choking.  Also, it's designed so that it's easier for the child to hold.  The second cup the "nosey cup" and it's the one we've used more.  This little cup is perfect for a cup-drinker in training because Mommy can see how much liquid baby is getting to the mouth because there's a hole in the cup over the nose.  We've used it a few times.  I've been using it a few times a week with Parker, but during the last two weeks he's really taken to it and is actually swallowing liquid instead of spitting it back at me! 

Cup with Adjustable Flow

Nosey Cup...The dip shown in the cup allows nose and mouth of baby to be seen during drinking.  And yes, I do recognize that it's pink! That's the only one the teacher had!

Some moms out there might wonder why we're introducing cup-drinking when Parker isn't even drinking from a sippy-cup yet.  Well, I have a few reasons.  First of all, sippy-cups have their time and place in a child's life.  In the case of my child, I'm looking at the situation as a Speech Therapist and as a mom.  My education has taught me that we use different muscles and movements of our oral structures (mouth, lips, tongue, etc.) when drinking from a cup versus drinking from a sippy-cup.  A sippy-cup probably does help the child control how much liquid comes out of the spout, but essentially, the child is still sucking the liquid out of the cup via the spout, which is easier than cup-drinking.  Cup-drinking is a life-long skill and if the textbooks say that my child might have low muscle tone, which could mean low muscle tone in the lips and mouth, then I'm going to give him a head-start in cup-drinking.  That's just my thought process on the issue, and I know I'm probably putting too much thought into it, but if I've learned anything so far about parenting a child with special needs it's this: you must be intentional in all things because your child is constantly learning, adapting, and absorbing information.  I'm sure I will resort to a sippy-cup when Parker gets to the point of wanting something to drink in the car or at a baseball game, so I'm not saying I'll never use one and I'm not saying that they shouldn't be used.  I'm just writing about my experiences thus far. 

We also started incorporating sign-language this week (we've been busy!) and Parker is taking it all in and not missing a beat!  Maybe I can write about that experience soon.  I hope you've found this information helpful! Goodnight!