Toys with Therapy Influence

I am always mindful of things... toys, apps, books...whatever it should be that would not only entertain Reid but would also hold value in a therapeutic way for him. Not necessarily a get the most for my buck mentality... but more of a how can I sneak in strengthening his little muscles without him knowing it mentality... and this Christmas I think I hit the jackpot in the occupational therapy/toy department with one gift in particular. 
Reid asked Santa for Legos. So Legos he got... lots of them, BUT the ones I love the most and I think he does too are these... the Lego Education Community Minifigures Set I found on Amazon. It is a set of just people, their body parts, and accessories. He has literally spent hours looking at the box for inspiration from their samples and then putting these little people together. The pieces are tiny so it has proven to be work for his little fine motor skills which I intentionally want strengthened to help him with his printing and cutting... The hours he has spent already gives me hope that this is a "go to" toy that will help him in these areas. 
At any rate, I thought I would share our Lego find in case you too are looking for toys to help with fine motor control. There are other sets beyond the "Community Helper" one, I also found a "Fairytale and Historic Figurines" one. Later on down the road Reid might be ready for one of the bigger "kits" where he would build a spacecraft or city... but he is not ready for that right now, these figurines fit the bill just perfect for him and I am so glad I found a set that is just people.

AND truth be told, (call this BONUS blog post material for any parent of multiple children finding themselves in a similar situation) ...there is another reason why I like these. Last spring during baseball season I made a split second decision as I was running out the door to get to Luke's baseball game and decided to pull out 2 bags of old Legos Luke had long since stopped playing with and Reid didn't even know existed, in hopes to keep Reid "corralled" for the game. Well, the result was nothing short of therapeutic for ME... it resulted in a squirrely little brother sitting calmly on an outstretched blanket by my feet totally enraptured by all the Lego pieces, so much so that I was able to watch the ENTIRE game with only an interruption here and there for a blue slurpee and m&ms (his snack shack staple). So... having a few more legos to bring to the fields in a few months doesn't hurt the whole "toy/therapy/keep em' entertained philosophy". 

Bagels = Zeros.... and Some iPad Love

In case you didn't know....... bagels look like zeros. ....Reid told me so. 
A week or so ago while making bagels Reid shouted out, "Mom..... ZERO!!" while proudly holding up his bagel. I stopped and looked at his little face.... and realized he was connecting that a bagel is shaped like a zero, therefore it was a zero and....well, I squealed.... yes, like a girl.... no, more like a very happy momma that was celebrating that her child had made this connection and then picked that little guy up and twirled him around. These little connections are BIG connections in our world! I didn't even know he knew zero yet.
So what do you do when your child brilliantly declares bagels look like zeros? Well.... you plop him on the couch and document it baby!

and then you eat those zeros bagels!

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One of the BEST investments we have made for Reid..... which we have seen contribute to much of his progress in number and letter recognition is the iPad. I love this thing, absolutely LOVE, LOVE, LOVE it.  He is so independent with it and navigates himself around to the apps he wants to work in that day and I feel ZERO guilt because he is playing and learning all at the same time. 

If you have thought about getting one for Christmas or are on the fence..... my advice? Get it. The advantage it gives our little ones with special needs is HUGE. In my opinion it is worth EVERY cent!

The app Reid is working on below is the iWriteWords app (it also has a # section) and I believe the one with the letters is from his Starfall ABCs app.... both are must haves. 

Other items worth mentioning are the Big Grips Frame shown below in blue and the Just Mobile stylus. The Big Grips Frame goes without saying... you want to protect your investment and we have found this one to be perfect for Reid's little hands. We had our iPad about a month before we bought this and we had too many close calls with falls so I feel much better with this on! The stylus is something we decided to purchase to help him with gripping an item such as a pencil or crayon. This is also one of his IEP goals so this stylus is helping us achieve that I think. We bought it in yellow to resemble a pencil but they have lots of different fun colors. He loves using  it to trace letters and numbers on the iPad... and sometimes you will even find my goofball with it behind his ear to be, well, ahem ....a goofball. 

Reid Shoots His Own Video.... on the iPad

We recently bought Reid an iPad for therapy purposes...and I must say it has been THE BEST investment we have made. I will post more about it later...but wanted to share this video real quick that HE made that we had no idea about until this morning..... We've had the iPad for about 2 weeks and he is very self sufficient with it so often we will prop him up in our bed or on the couch with it safely secured on his lap....so we are not always with him when he is playing on his favorite applications. Well this morning we kept hearing the same sound being played over and over again this morning from our room.... we walked in to discover that he was re-playing this video that he must have shot last week sometime because I cannot even remember when he had that sweatshirt on last! We just stood there and looked at each other and then busted up! So...... not only can this guy play independently on his favorite apps and is becoming quite good at them...but apparently he is a budding videographer to boot!
So...here goes our Reid, taping his own mini video with his family none the wiser in the other room! .....little stinker!! :)

Foam Yoga Blocks...for Our Little Ones with Down syndrome

In the effort of Down syndrome awareness I wanted to share something that our fabulous occupational therapist, Karen, introduced us to that has helped Reid tremendously with his sitting posture both during therapy but also at preschool. As we all know low muscle tone is something to contend with for our little ones with Down syndrome and it is not rare for me to find Reid sitting on the floor with his back hunched over, looking up at Sesame Street with his chin down but eyes turned up and tongue out or head way back resting on his shoulders with tongue out. Karen started using a foam yoga block with Reid during therapy about a year ago and explained that this helps tilt his pelvis forward and realigns his shoulders, neck, and head. This in turn changes his visual perception of things, seeing them at a different level and helping him to be more alert and engaged. It totally works... and I have noticed less open mouth and drooling from him. Below are pictures during therapy and the last one is Reid and his backpack....about a week into preschool I noticed that familiar floppy posture of his while sitting during circle time. I asked his teachers if it would be okay to try the block with him at school, which we did...and they noticed a HUGE difference in him. Plus, they also commented that it helped him to stay in one place on the floor LOL :). So Reid takes his block with him to school and knows to get it out first thing and takes it to the floor to sit with the other kids. We bought our yoga block at Target but you can also find it at any sporting good store.

Reid's First Graduation Cap and Gown Style...Early Intervention...Connecting With Other Moms

I recently posted about physical therapy, the use of the Wii...and Reid no longer needing services from his in home physical therapist...a graduation of sorts in terms of gross motor skills. That post actually made me think of Reid's first true blue cap and gown graduation when he was 12 months. We had been sooo fortunate to hear of an Early Intervention Program in Laguna Beach funded by the Assistance League . (If you are reading this and live within 30 miles...it is definitely worth the drive!) This program is for babies with special needs, including preemies, 0-12 months. It is fabulous for many reasons...they structure the morning with first a music and movement time for the children and then move you into stations that you and your child rotate through. Each station has a specialized therapist there to work with your child on either occupational therapy, gross motor skills, feeding and oral issues, cognitive growth and/or infant stimulation. This was all fabulous and Reid benefited greatly from it...however the part I benefited the most from was the last hour of the program, I get choked up just thinking about it. A unique aspect of this program was that last hour...women who are members of the Assistance League volunteer their time by coming and rocking the babies and feeding them their bottles while the moms get an hour to go upstairs and share with one another, cry together, and just sit with others who "get it"...who get what it feels like to raise a little one with special needs, who have similar birth stories, who understand the emotions that go hand in hand with this road we are on.  What a special time...and as you can imagine lots was discussed, shared, and processed through behind those closed doors for so many of us.

I actually did not start the program until Reid was nearly 7 months. I didn't feel like I was ready any time before that...I was still living in my little cocoon I had built for myself and was feeling too overwhelmed with all the in home therapies he was receiving to even think about getting out of the house super early and spending 3 hours on more therapy. Well, if I could go back in time....I would have started the program with Reid as soon as they would of had me. Two things have truly helped me along this road....the interaction with those other mothers early on...and my blog. To connect with others who are walking in your same shoes is more than therapeutic, it is beautiful. I realized this the first day I went to the Early Intervention Program and I had not even made it inside yet, I was still just in the parking lot and looked over and saw one of the moms, who I now know as my friend Jocelyn. I remember seeing her getting her son out of her car who was close in Reid's age and I saw that he had Down syndrome too. She was beautiful, put together, had a smile on her face...and as I stood there by my car I had tears suddenly find their way to the corner of my eyes. I couldn't wait to talk with her because I knew she "got it". That was the piece I realized I was missing... connecting with others who also have a child with Down syndrome. That was 2 years ago and I have now met so many beautiful moms who "get it" and I am so grateful... I am a better mom for it.

Below are a couple more pictures from the EIP group...dressed for Halloween

Physical Therapy...And The Wii

Last Friday we had our final appointment with Reid's physical therapist...what a milestone! Truly...what a milestone, when I think back to my sweet newborn baby who was so floppy and had very little muscle tone. He hated tummy time, didn't sit until close to 10 months old or attempt scooting on his tummy until just before his first birthday, didn't stand until he was 19 months old or attempt steps until 21 months...but now...now my baby is steadily walking (in a very determined way I might ad with both his little arms just a swinging fiercely), running, climbing stairs upright (without using his hands or rails!!!), kicks a ball with both feet (one at a time of course :) )...and is attempting to jump (he tries so hard but still only gets one foot up at a time, but it sure gets points for cuteness...and many giggles from Luke!!) 

We could not be more excited for Reid's gross motor growth...or more grateful for all the support we received from Donna, his physical therapist. Donna started with him just before his first birthday when he was only beginning to combat crawl. She was so fantastic with him and pointed out things that we did not even see or know to look for. She pointed out that he was weaker on his left side and therefore only wanted to put weight on the right side. He threw with his left hand and tended to grab toys with his left... we thought that that had meant he was just showing a dominance for his left side (his dad is a lefty) but Donna pointed out that actually it was more a muscular issue in that when he reached or threw with his left all the weight bearing was actually on the right, so we worked on balancing that out and helped him to utilize both sides of his body. Donna helped Reid move from combat crawling to crawling on his knees, to standing up on his own in the middle of the room, then on to walking...he actually took his first steps for Donna...and I wasn't even there for it, Daddy was there in place for that appointment (sigh). In the last few months we actually added Wii Fit into our therapy equation. We started out first just using the step board to help him start working on going up and down a small step...but then we graduated him on to all the activities.  He was and is so motivated by the Wii Fit, he runs in place, he bends his knees and shifts his weight from right to left, he moves his hips back and forth for the hula hoop game, and he even bends down and holds his arms up in the air for the ski jump and tries to jump on cue (he is not actually completing the activities as Luke would but Reid is content with just seeing the activity on the screen and moves appropriately for each new activity). I have to say I recommend the Wii Fit for anyone but it is especially great for helping our little ones gain strength and use all their muscles.
Donna...thank you for all you did to help our Reid! We are so thrilled that he is the first child you have worked with to be released so early who has Down syndrome...not because of budget cuts, but because he has met his goals, we attribute that to you! We will miss you but know that you will now have time to help another little one walk, run, and ultimately soar!

Will My Child Have A Friend?

When Reid was born and we learned of his diagnosis a thousand thoughts and fears flooded me...many of which went to his future. A scary place to be when my son was only a few hours old and I really didn't know much of Down syndrome at that point. But, one of the thoughts I had or something I questioned was will he have friends? My heart hurt as I thought of this and wondered.Recently Reid answered the question for me...not that I didn't know the answer much sooner then now as he has been enveloped and loved by so many especially Luke's friends who I can only imagine as big protectors and extra big brothers for him later in life...but recently Reid made a little friend all by himself! About 7 weeks ago Reid started what is considered "center based therapy" in place of some of our home therapy that he was receiving (Mary if you are reading this, we miss you and Infant Stimulation so much!!). Reid loves his little school and loves his little friend Elijah. You can see in the first picture that Reid was not too sure of him at first with his hands behind his back...but he was quick to warm up and these two are now the best little pals...in fact below you can see Reid tickling Elijah and hamming it up (Elijah is quite the ham himself and absolutely adorable!). 

All these pictures are from Reid's first day there. During circle time on the floor he decided he had had enough and decided to pull his socks off only to put them on his hands as puppets that he made talk to all the kids sitting around him. I watched Elijah watch him and sure enough....he pulled his socks off too. 

It was happening...Reid was making friends, a special friend at that. The director has told me several times that these two are like old souls who have found each other. Do you know how that absolutely made my heart sing?! She has even reported that Elijah has become Reid's body guard. Apparently a little girl had pushed Reid down on the playground and Elijah saw from a distance...put his own toy down... and came over to where they were and pushed the little girl down that pushed Reid. 

Recently I had the privilege of meeting Elijah's parents as we kept missing each other at drop off and pick up. I couldn't wait to tell his mom how much both Reid and I have fallen in love with Elijah and how much I love watching these two wave goodbye to me from the window with their arms around each other and faces shmooshed against the window (I have to get a picture of this...it is too cute!) and how Reid planted a big kiss on Elijah's lips one day as we were leaving. Well...in talking with Elijah's mom I came to find out that she has a younger sister who has Down syndrome. Hmnnn...was there something in Reid's little spirit that Elijah sensed that drew them close? She showed me pictures of her sister and she is absolutely beautiful and...how fantastic is this.... she is part of the cheerleading squad for her high school!! Zoey, Presley, Preslie, and Caydence cheerleading just might be in your future too!

Oh, where was that crystal ball when Reid was born that could of shown me glimpses of the future and showed me these pictures and told me of these moments that would of helped ease my heart when he was so tiny? No, no crystal ball to be had....just a journey of discovery with my little guy. What we have both discovered is that Down syndrome is not holding him back in any capacity....his life is full and filled with joy and special little friends. Thanks Elijah!

October: Down syndrome Awareness Month (post #3)-How will Ds affect Reid?

How will having Down syndrome affect Reid? This is a question I have received a lot...and decided this would be a great way to dive into the "awareness" part that this month is dedicated to. I actually like when people ask me this, it allows me to share what most don't know unless they are christened into this world somehow...and 21 months ago I wouldn't of known either. This question though will illicit different responses as he grows and enters different chapters in his life, so I will dedicate several different posts this month as to what it will mean to Reid throughout his life, at least as best as I can because Reid of course will be the real author of those chapters. 

For this post however I will answer the question as in...How has 

Down syndrome affected Reid from birth until now?

Muscle Tone: Most babies born with Down syndrome have low muscle tone, which means that their muscles are relaxed and "floppy", it usually affects all the muscles in the body including the mouth so nursing and feeding can be an issue. The low mus

cle tone affects movement and strength so many of the normal milestones like holding up their head, rolling over, sitting, and walking are delayed. Reid has low muscle tone and it took him awhile to enjoy tummy time to strengthen his neck muscles. He was about 8 months old before he held his head up really well, 10 months to sit up on his own...putting him in the "Bumbo" really

helped him in this area I think. He started to combat crawl just before his 1st birthday, crawled upright on hands and knees at around 17 months, pulled himself up to a coffee table at 18 months and started to walk around it while holding on. At 20 months he first attempted to stand up in the middle of the room all by himself without holding on to anything...such an exciting time! He doesn't stand for long, but now at 21 months he is trying to take a few steps. In comparison, just for comparison sake, Luke at 18 months was literally running circles around us.

Therapy: Because of the Down syndrome diagnosis and the low muscle tone Reid was referred to our county Regional Center when he was born and became eligible for services which are all paid for by the state. I had no idea this even existed prior to his birth. We have an occupational therapist come into our home once a week to work on fine motor skills and the muscles from the torso up. She also works on feeding issues, and facial exercises to help build the muscles in his face and mouth. It was once believed that people with Down syndrome had bigger tongues, making it stick out. This actually is usually not the case...it is often because of the relaxed muscles. I am

 so glad our therapist pointed this out to me because we have worked on this from very early on and it has really helped him. The only time he really sticks his tongue out is if he is really tired or concentrating really hard on something. Okay...on to the other therapies. We also have a physical therapist that comes to our home twice a week to work on the gross motor skills, and m

uscles from the torso down. Once Reid is walking we will reduce this service down to one day a week. We also have another therapist who works on Infant Stimulation, the cognitive piece. Because Down syndrome affects the cognitive development we want to make sure we give him as much stimulus as possible and keep pushing him in cause and effect type play as well as sensory play. The pictures in this post are from some of his therapy sessions.

Speech: Babies with Down syndrome also experience delays in speech and language development. Knowing this we have decided to teach Reid to communicate with us through signing. He loves the Signing Time Videos www.signingtime.com He probably has about 15-20 different signs he uses consistently. We have a pocket chart in the playroom with laminated cards of objects on one side and the demonstration of the sign on the other side...really helpful for mom!! :) I also heard somewhere along this journey that singing to your child is very helpful in language development...well if you've ever heard me sing you would encourage me NOT to sing to him for fear of further delays!!...but luckily the former kindergarten teacher in me has oodles of great CD's that we listen to constantly. So, if you see me driving down the road singing the "Winnie the Pooh Theme Song" or "We're Going on a Bear Hunt" at the top of my lungs...it's all in the name of therapy :)! We did just have a speech evaluation done to see if he qualified for speech services and awaiting the results. However, I was told during the evaluation that he was scoring so high that he may not be eligible for services. I have such mixed emotions about that because of course I want him to score high but at the same time I know this area will always be a little delayed so I would like as much help as early as possible. This could be a whole post on it's own...so I'll write more about this later in October after I get the results.

Heart and Immunity: Nearly 50% of babies with Down syndrome are also born with a heart defect, many times requiring surgery. Reid underwent open heart surgery in August of 2007 (If you are interested there is a post about it in my August folder with pictures). He was nearly 8 months old at the time

 of his surgery. I was told to expect a new little guy after surgery and they were right. Reid had a hard time gaining weight prior to surgery because his heart was working so hard and burning so many calories. His immunity had also been compromised

and he would often get respiratory infections...because of the heart not working properly his body had a harder time fighting. But, after surgery he is so much healthier and active. He does need to take heart medicine twice a day and is still monitored closely by his cardiologist.

Socially: Having Down syndrome does not hold this little guy back in any way socially. He is so friendly, waving hi, with both hands no less, to everyone in the grocery store or wherever he is... He even reached out to a total stranger at Disneyland the other night to have them hold 

him.  I've also signed him up for several classes through our city's parks and recreation program He has been well received and LOVES being with the other children.

I hope this post gave a little window into how Down syndrome has played into Reid's life so far. He continues to grow and develop and is starting to show his personality...which is so cute!