Thursday, December 27, 2012

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". 


Monday, November 5, 2012

Reid's Vote for President...

Reid and his friends will vote someday... not just as a privilege but as a right
About 16 years from now... on the eve of the election of 2028 I fully anticipate sitting in our living room having a good discussion with Reid about the candidates before us and the policies and laws he will have a hand in casting a vote for. It will be his first of many elections he will be able to take part in. There isn't any reason why he will not be able to vote, or any reason he will not be able to understand the principles and agenda each candidate stands for. I also anticipate proudly driving him to the voting booth if he isn't able to drive himself... and standing outside waiting for him extremely proud of him. I anticipate Reid getting a kick out of this experience and being fully passionate about whoever his candidate of choice is...

But for now.... my smarty pants is only 5 and on the eve of this election 2012 he tells me he is the best candidacy choice and that if he was elected president he would... well, play with his buddy Daniel A.!

Unfortunately tomorrow there are going to be some friends with intellectual disabilities that may be given a hard time when they show up to vote... I hope not, but if they do I hope they are armed with the information below:
You do have the right to vote! If you are a person with a mental disability and understand what it means to vote, federal law protects your right to vote. The laws that protect that right: The Constitution and the Americans with Disabilities Act, 42 U.S.C. § 12132; Doe v. Rowe, 156 F.Supp.2d 35 (D.Me.2001).

You have the right to get help from a person you choose. If you can’t read or need help voting because of your disability, you can have someone help you vote. You can bring a friend, family member or someone else you trust to help you. You can ask the poll worker to help you if you didn’t bring anyone with you. The law that gives you that right: The Voting Rights Act, 42 U.S.C. §§1973aa-6; The Americans with Disabilities Act, 42 U.S.C. § 12132 

If you have a problem, you can get help by calling 1-866-OUR-VOTE Lawyers are available to give voters with disabilities and other voters advice and help with voting problems, so call 1-866-OUR-VOTE (1-866-687-8683). The law says everyone gets to cast a ballot, so don’t leave without voting!

Even if someone says you cannot vote, the law says the poll worker must allow you to vote a special ballot called a Provisional Ballot. Later, an election worker will decide whether you are allowed to vote in the election. If you are, your vote will be counted. The law that gives you that right: The Help America Vote Act, 42 U.S.C. § 15482

For more information about the rights of voters with disabilities visit

Saturday, November 3, 2012

Why I Write...

Well, I checked my stats tonight and I have written, three... gulp, 3 posts so far in 2012. That's not so good. Have a lost my mojo?? Not so much... just got pulled under with this thing called life. I've wanted to come back... wanted to write... have actually had lots on my heart to write about, particularly with Reid transitioning to a general ed kindergarten this fall and all that brought us to that crossroad.... but my blog laid silent most of the year... and needed to I suppose for a bit. I don't like fast and furious in my life... I like slow and steady much better and in order to try and pull in the reigns a bit when life felt like it was speeding up much too fast I decided to set aside a few things... and my cherished blog was one that needed to take a back seat. But... my fingers have been itching to type and my heart and head have been housing stories I've wanted to share... 

And yes...I know this is totally vain but I really truly think that the fact that my blog was still stuck in Christmas mode the whole year through bothered me to the point of well, silence. But weeks have a funny way of turning into months...and well, we are now 7 weeks away from Christmas... and the fact that in the last 24 hours I have purchased 3 Christmas presents as well as the wreath below... well, I deem the background appropriate enough to say, "You're close enough to Christmas sistah... hold your head up high and type away!".

So type away I will... and what the end result of tonight's typing will be I am not at this moment sure of, except that I know that I have been wanting to write about a question I was asked recently....

A few weeks ago I was asked by a new friend, who also has a sweet son with Down syndrome... "Why do you write?" as in my blog.

I type my answer here maybe even more as a reflection for myself than it is meant to be informative in this space... but here is my answer;

My dad lives out of state, so when Reid was born I called him from my hospital bed to tell him the news. I remember clutching to that phone needing to hear his voice on the other end, I needed to hear my own parent tell me it was going to be okay, which he did but just as speedily as those words came off his lips so were the words, "Are you ready to write kiddo?". I cried and told him that this, Down syndrome, was not what I had ever envisioned myself writing about. He knows my secret passion to write because we both share the bug~ his to write a novel and mine children's books. But, he encouraged me to write, about this, Down syndrome. I filed it in my head not knowing what I would ever do with that comment, but filed it knowing it was a special exchange between the two of us.

About 6 months later I stumbled upon a site that fed blogs through it... all of these blogs were written by family members who had a child with Down syndrome. What??.. I could hardly believe it. Night after night once the boys were in bed I would scour the site and all the blogs and read post after post of families just. doing. life. And... they were happy. Life did not end for them. The theme I began to see in all of them was that Down syndrome was a non issue, it was a blessing to them, it was what molded them into better versions of themselves... and it was fuel to my soul. Truly... the idea that I could peer into someone's life and see how they were doing life along this new journey I was on was so helpful to me. I gleaned resources on top of encouragement, and began to put into focus my philosophy of raising a child with special needs. I could feel myself taking a little of this and a little of that from each site and each family.... without them even knowing it because they were right there- on the internet- for me to learn from. I. am. so. grateful. for those blogs in the early years. And then as crazy as it sounds... many of those strangers I gleaned from in the beginning... have become friends along this road. People I feel invested in, people I never would have met had it not been for this extra little chromosome that our children share. I need this connection with others who also have a child with Down syndrome as much as I need the connection with my childhood friends, and other close friends I've made in my life. 

That... that's why I write. To connect. And... if there is a family that stumbles upon my blog that is new on this journey and can see the same thing I saw in others.... that we are happy, that we love our boys to the moon and back, that Down syndrome does not define our youngest son- that he is more like his brother and his friends than not- that we are not sad anymore that he has Down syndrome- that we feel so incredibly blessed... then I say thank you to those who came before me and showed me the beauty of writing and sharing so that others might get their legs about them like I did. 

"Yeah Dad, I'm ready to write...."

...and as for what my little men have been up to while my blog has laid silent, here is a snippet... 

Their first puppy

Best Buddies Friendship Walk 
Preschool Graduation
All Star baseball
Summer fun

First Day of School~ Kindergarten and 5th Grade

Robert H. Goddard and his superhero sidekick

...and just today~ Mummified at a birthday party

 That wreath up top I bought today?... bought from a friend on the other side of the US who I met via her blog when she was still pregnant with her sweet Bennett, who also sports an extra chromosome. Thanks to her writing, I got to celebrate his birth and pray for him when he was going into heart surgery months later. I love this little thing called writing connecting.


Thursday, May 24, 2012

Dear Target... Thank You, Love Reid

Oh dear, there is so much dust on this little blog of mine.... but I am attempting to post, but posting I must do with one hand wrapped over my eyes so as to shield me from the sight that my blog is still stuck in, gulp, Christmas mode.... and that I have not posted since January. But, good news is that anyone reading this post... who may also feel crazy busy... maybe even frenzied at times in their life can pat themselves on the back and feel good in the fact that at least their blog does not scream CHRISTMAS HOLIDAY CHEER at the end of May! So... you are welcome!

So, why after all this time roll up your sleeves and set your fingers back on the keyboard you might ask? Well, it has to do with a picture, and as the saying goes a picture is worth a thousand words... this one can illicit about that many from me... whether I get them all out is another thing.

That picture is this one... 

I actually don't physically have it in my hands yet but my friend, Sharon, on the east coast alerted me to it as she received her new summer Target catalog in the mail yesterday and this shot is featured on the back. The little blonde haired, blue glasses wearing, baseball uniform sportin guy is Reid. I love, LOVE when companies feature children with special needs in their print ads... it is amazingly sad how under represented our children are in this field... but I think there is a new growing awareness and more and more companies are recognizing this and making sure our children are included, and Target is definitely leading the way. 

Honestly, had it not been Reid in this ad but another one of his friends with Down syndrome I would have still done the same internal standing ovation for Target and still re-vowed my ferocious allegiance to them because it is just that special to see kids being kids... no matter the number of chromosomes or special need.

But, since it is Reid .... I get to share details or parts from the shoot that are not visible to anyone else and are stored in my heart. 

This opportunity came quite out of the blue.... Back in January we got a call from Infantino, (who ran the Everybody Plays Campaign that Reid was fortunate to be a part of in the fall).... and told us that an agent was looking for a little boy with Down syndrome for a Target ad that was to be shot soon there after and wanted to know if we were interested... and then one thing led to another...

Which led me to driving Reid out to Malibu for the shoot. As I started to get closer to the location a frog settled in my throat and tears began to fall as I traveled down Pacific Coast Highway, taking in the beauty of where I was and the beauty of the opportunity before us. I kept looking back at him in the rear view mirror and I kept thinking... "Good for you little guy. Good. For. You.... that you get this neat opportunity to be visible in a world when so many times our kids are not". They just aren't sadly. The tears continued to welp up, it's a wonder we made it there in one piece as I traveled with tear blurred vision... I was just really happy for him and humbled yet again as to where his little extra chromosome has taken us as a family.

I finally found composure as we parked and walked in. I had no idea what to expect but as we were greeted one of the gals asked Reid if he would like to dress up in a baseball uniform... He smiled huge and said "Yes!!!" Seriously, seriously?... that could not have been any more perfect for Reid's baseball fanatic personality. His little cleats even lit up for heaven's sake... he. was. on. cloud. nine.

When I look at this picture there are things that make me just giggle...  like the silver trophy he is holding, well.... that was actually the 2nd trophy because the first one which was actually gold, well, umm.... it kinda slipped out of my guy's hand and was no longer functional. Whoopsie ;). 2nd, the grass stains on the boys' pants.... that is actually grass stain spray paint (who knew there was such a thing??). The patch of grass the kids are on.... not too easy to tell but just beyond are stairs that take you down to the beach and cozy little beach front cottages. I don't know this for sure but it reminded me a lot of the summer beach house scenes from the movie Spanglish. 

It was on that patch of grass the kids took a break in between shooting and hit a few baseballs. When it was Reid's turn I remember watching the kids all inch closer to him thinking he would not be able to hit the ball very far... the competitive mom in me secretly hoped he would just wallop the heck out of the ball and show 'em... and I laughed out loud when he did! Wallop he did and the kids cheered and hollered as they ran to retrieve the ball that inched ever so close to the crest above the beach below. Perhaps it was this moment for Reid that helped him feel like one of the guys but during that break I walked over to him to try and brush his hair, and in embarrassed teenager fashion he told me.... "Stop mom, my hair not cwwazzy!!". 

When I look at that picture I think of all those moments above and of how amazingly clear Reid's speech was that day in that setting and of the incredible "Baby Wrangler" Mark (pictured here with Reid) who was positioned just outside the scope of the shot.... who rallied the kid troops to relax, smile, giggle and just do their thing....

But, it is my heart that looks at that picture and thinks back to the "me" when he was born and I think had someone been able to have fast forwarded 5 years for me on the day Reid was born and been able to show me this picture I know I would have grabbed it, clutched it between my fingers and squinted close trying to imagine that that would one day be my guy... it would have given me a much needed giggle and smile through my tears as I laid there in that hospital bed... how soothing to my soul that would have been on one of the best yet hardest days of my life as it was also the day we learned of his diagnosis. ...a day that I worried about his future and worried that life as I knew it was over.... little did I know that not only was it NOT over it was about to expand in a multitude of ways and become even more beautiful....

Those are the parts... the parts you wouldn't be able to see unless I shared...

To end this post I think I'll simply leave it with my son's words as I imagine he would say them....

Dear Target, 

Thank you, thank you that you give my friends and I an opportunity to be seen as the "typical" children that we are in your advertising. My Poppa said he'll always shop at your store because he likes what you stand for... personally I like your awesome  cleats that light up when I round the bases! Because of you one of my classmates at preschool brought this ad in and asked if I would sign it, that's kinda cool for a kid my age! I plan to ask my favorite mailman when he finally delivers your summer catalog to my door to turn it around so I can show him who is on the back. I know he will like it because we are good pals!



Thursday, January 12, 2012

Slow and Steady

I recently came across an article a teacher wrote after speaking with her students about advice they would give moms on "mothering"... She said that year after year overwhelmingly the majority of them said that what they enjoyed most, and what made their hearts happiest was when their mothers did simple things for or with them. I loved reading this list, I found it refreshing and doable sharing it here! To read the full article go here.

Here is a list of the top ten things students around the world said they remembered and loved most about their mothers.

1. Come into my bedroom at night, tuck me in and sing me a song. Also tell me stories about when you were little.

2. Give me hugs and kisses and sit and talk with me privately.

3. Spend quality time just with me, not with my brothers and sisters around.

4. Give me nutritious food so I can grow up healthy.

5. At dinner talk about what we could do together on the weekend.

6. At night talk to me about anything; love, school, family etc.

7. Let me play outside a lot.

8. Cuddle under a blanket and watch our favorite TV show together.

9. Discipline me. It makes me feel like you care.

10. Leave special messages in my desk or lunch bag.

This "list" written by the very ones whose voices should be heard.... says a lot. Slowing down and simmering in the simplicities of just being together and sharing life together in a slow, sweet pace sounds awfully good! 

One of my New Year Resolutions...? You betcha, slow and steady baby!