Putting the *Extra* in the Ordinary

Around our house these days (well around whatever house we living in at the moment LOL), we are learning the important value of everyday things. Any parent whose child has a disability can relate. You learn to celebrate victories in the activities which come naturally for others, but for which your little one must struggle so hard. I read a blog from a friend of ours that was celebrating her daughter mastering the straw and it almost brought me to tears. Why? Because these past few weeks we have celebrated our own extra[ordinary] moments.

So....here are a few of those successes (in no particular order)!

This week Little G went #2 on the potty. I know a lot of parents' kids struggle with potty training. Others not so much. But it is a HUGE challenge for SPD kiddos. In fact, he rarely does anything on the potty. And this was the first. time. ever. for #2. It was the tiniest little bit and most was already in his pull-up, but we all squealed with delight -- and G got to choose his potty prize....an hour long DVD of Bubble Guppies. (What was I thinking?!? Twenty minutes of that show will drive any sane person crazy. Yes. But I was already crazy. Crazy excited I guess.)

Grant and his speech therapist

Therapy went really well this week and we had two big victories there... First, in speech, Grant was able to recall an event and initiated telling the story to his therapist. It consisted of "Greenwood... mumble mumble.... house....mumble mumble...Grant bed....mumble mumble" Grant has really improved his speech when expressing his wants/needs, but we have never heard him recall a story of something that happened to him in the past. His therapist had no idea what he was talking about, but I new EXACTLY, because last weekend we moved all our furniture to our new home in Greenwood and set up his bed in his new bedroom.

Grant's bed in his new room

The next big step happened during his OT session. Grant has a really hard time eating with utensils. Some of it has to do with his muscle tone, some with his motor planning skills, some with his eating difficulties. He always has a huge mess if he is eating something other than a solid because very rarely does it manage to get onto his utensil, across the plate to his face and into his mouth. Often he tires of trying and wants someone to help him or gives up and doesn't want to eat altogether. Well...the OT tried some different techniques this week with preparing his muscles and then he attempted to eat applesauce. Needless to say, he ate the entire container by himself without so much as a dribble of applesauce ANYWHERE! Again, not such a huge thing for most...but I was literally in shock. His form was still a little awkward, but he was able to complete the task all by himself - YAY!

I know we had other minor victories since my last post...but I just cannot recall them all at this very moment. Oh well. But, not to be out down by their brother, Carter and Noémi have had their own recent successes. And we take none of those for granted either! Carter is reading like a champ! At the end of the school year he was reading small words and simple sentences but literally this summer has completely mastered reading. He surprises me daily by the text he sees and recites to me. Noémi is right on track for her developmental milestones and has really blossomed into an active baby this past month. She is rolling all around and flails her arms and legs on her belly as if she was ready to master this crawling thing. She laughs and giggles at her silly brothers and sleeps like a champ through the entire night. And at her check up this Monday, she was 15lbs 6oz! Maybe because she is the third, or because I am so busy, but I feel like her infancy is flying by...oh, to slow time a bit and soak in her baby-ness!

The kids on July 4th

Well...my next blog post will most definitely be from our new abode. We are officially 'moved-in' and will be sleeping at our house in Greenwood starting this weekend. The week after that our family heads to Pennsylvania to speak at a family camp and then it will be August and time for school to start!! I can't believe summer is coming to a close already!

Mom on a Mission

This summer I have a mission. I'm on a mission to get to know my son better and to become better educated on how we can meet his needs.

Last Fall, when we first heard the words "sensory processing disorder" we were in a different place. We were actually feeling very relieved to finally know what we were dealing with. As Grant started at a developmental preschool, we saw almost immediate improvements in his speech and we were encouraged. But as the end of the school year approached, I began to realize the whole summer was ahead of us with no therapy, no respite (for Grant or for momma), and no idea how to help him with his daily challenges. That was not acceptable in my mind so I began my mission.

After phone calls to our insurance company and phone calls to the pediatrician and phone calls to therapy facilities, I was able to iron out a game plan. Grant was evaluated the week school let out...again...with a speech, occupational and physical therapist. It shouldn't surprise me, and yet it does, every time he is evaluated I learn something new (not always pleasant) about his disorder or his disability. It is satisfying and scary at the same time. The more I know, the better equipped I am. But the more I know, the less denial I can live in about what our life - Grant's life - may hold for us. It is an emotional roller-coaster some days.

All that to say, some things I've learned the last three weeks:

1. Insurance is important and a blessing, but it only helps to ease the financial burden of a medical disability.

2. Grant has unique sensory challenges, which are hard for all of us, BUT his disabilities are relatively minor compared to some children with SPD. For that, I am grateful.

3. There isn't any therapy or program that will "fix" Grant. Instead we are learning how to help him improve his quality of life. We, as his parents, are his greatest asset and support system.

4. Therapy is fun for a kid. It's hard work, but Grant loves it so much. He doesn't want to leave when it's over and is excited when he gets to go back.

5. Nothing breaks a parents heart more than seeing their child struggle. I have to see it everyday. I'm still learning how to deal with that reality. Some days I deal with it better than others.

6. Grant brings our family SO MUCH JOY! The challenges allow us to better appreciate those moments that are filled with pure love.

7. You give a mom a mission for her kids...and she will do WHATEVER it takes to make it successful. One way Grant works to strengthen his hands is by digging beads out of stiff therapeutic putty. This momma didn't just buy beads. This momma found super cool animal shaped ones! Cause that's what we do for our kids :)

A Sigh of Relief...or is that a sigh of exhaustion?!

Whew and sigh. That's how I end most days around here. Relieved we survived another one and exhausted at the thought of going through it all again tomorrow :) Tonight is definitely one of those nights. We had a wonderful opportunity through my mom's employer to take the boys to a children's theater production. Now... let me just say.... these types of activities - normal family outings - cause me a LOT of anxiety. Why? Because with a kiddo like little G, you never, never know what you're going to get. It could be a great experience...or it could be the worst experience of your life. Sensory issues are always at the forefront of our mind in a new environment with uncontrollable/unpredictable sounds, lights, and crowds. He could love it or he could have a complete meltdown. Right now, as we maneuver this disorder, it's a toss of the dice. Now I'm sure when he gets older and communicates with us more clearly, it will be a less frightening experience for all of us!

Well, thankfully tonight he LOVED it. He sat still the entire musical and seemed to really enjoy himself....too much apparently....because when the show ended, he didn't want it to stop. "More show! More show!" he pleaded when the lights came back up. An hour of enjoyment can quickly fade when the distraction is no longer there. So the trip back home was not his (or our) best moments of the day. He was tired... so was Carter and I.  Some times it is hard to not let the difficult moments out-shadow the enjoyable ones. When Grant gets tired, he is even harder to understand, help or reason with. We ended the night with words of encouragement that tomorrow morning when he wakes up he will get to go to "beach" (speech). He's really glad about that - and so am I.

The boys waiting for the show to begin

Why in the World?

Why, oh why, would I be so crazy as to start another blog?! If you know us, you know we have a crazy busy life. I'm sure any mom of three (or ANY mom for that matter) can relate to that whirlwind feeling that life brings. To say I have a lot on my plate is an understatement. But that is exactly why I am starting this blog. My life is full and full of joy! I don't want to forget one single moment of the good or the bad. Blogging, for me, brings perspective. reflection. reminders. I want to be able to look back at this crazy busy life and say "I remember when" even if I've only had a few hours of sleep, a few moments alone, or a few too many cups of coffee! So join me for the ride. I hope you experience a few laughs, a few tears, or just a few moments in our shoes.