Tag Archives: special needs

I Am Here Today

This will be my first open letter to you, my love bug. A dear friend suggested I leave you my thoughts while they are fresh and have the conversations I imagine we would have if you could tell me what you are thinking. And with that in mind, I couldn’t just post this video today, I had to break it down.

Reese, you are amazing to me.  I believe you deserve to see this progress, when you’ve started reading, you will be able to celebrate how far you’ve come. Because it’s all YOU, baby! 

Your progress the past 6 months has been overwhelming and there just hasn’t been a way to keep up with documenting it. You have to watch this 3-4 times and each time let me point something different out to you, because only your dad and I, and your teachers can see it. 

First, Watch your demeanor and your attention. 

  • Sitting, following instructions and looking where your teacher is guiding you. 
  • You are calm and not fidgety.
  • You are aware of your friends sitting around you. 
  • You followed through on the whole task… meaning you didn’t get distracted. 
  • Watch your little dance – it’s become your way of showing you are paying attention. 

Now observe your clothes. Today I was feeling quirky, so we both have our best funky outfits on. You can thank me later for your sense of individual style. But it’s more than that…

  • You have a necklace on. Historically you have taken these off. They bother your neck. Today you’re cool with it. Progress.
  • These leggings are almost too small, but I had to get them on and then cover the booty up with shorts. And you were ok with that, too. And then there’s one leg bunched up — you did that on purpose. 
  • You put those black boots on by yourself this morning. Socks, too. A HUGE win! (It’s a special word, highly overused these days). You pulled them open, slid in the foot, and zipped each boot up. And you did all this without really looking at your hands and what you were doing. It’s easier for you to focus when your eyes aren’t taking in so much information. 

Now look at your physical actions. 

  • You’re sitting cross-legged. Ok, first, you’re sitting. No grown up behind you, no special Elmo fuzzy chair any more. You are equal to your friends. 
  • Your teacher insists on you crossing your legs. This is great for coordination, it also keeps you from rocking. But you don’t need to rock when you’re engaged and comfortable. 
  • Watch your head turn to each child when she says their name. 
  • Look how you dance your head and move your feet with purpose. You have gained so much physical control and awareness. 
  • Your hands sometimes are your biggest challenge but you grab our card and know exactly what to do with it. 

You have become a full participant in circle time and I honestly didn’t know if it was posssible two years ago. You belong here and you are so loved! And I know everyone’s belief in you spurs you forward, but this is definitely all your doing. 

So wherever you are when you read this I want you to hold your head a little higher, and smile big, because you inspire people. You are so deserving of so much admiration.

And that is why I am here today, with you ever day.  You inspire me. I love you. We all do. 

A little slice of crazy

Beautiful night to sit outside after dinner. Even if it’s not a peaceful or relaxing moment. 

Just a little peek into our special kind of craz here. Manis/pedis are NOT fun this little hyper-sensitive busy bee. 

Bubba doing what he does best, distracting Reese during one of her not so fun sensory overload moments. Notice how she licks her hand the whole time? That’s her new “I’m uncomfortable” response. 

It’s hard to tell Davis to stop and honestly sometimes I think he is helping distract her. Her happy senses are lights and music and bouncing. Her not so happy is any kind of pressure on her hands and feet. It is something we work on every day. 

And then we see new signs of learning by our little love bug. She is following the simple task of picking up her toys. We do hand over hand a few times but she eventually does it by herself. It’s like Groundhogs Day around here though. Just because she figured it out yestersay doesn’t mean she will remember today. And then she figured it out again and we repeat. We repeat a lot. The good behavior and the bad. I admit we are so tired we don’t stay on top of her like we know we should. 

But then we see the funny moments when she gets to explore by herself. Like bedtime. I never had to think about what was around her crib before this month. Now, she has discovered she can pull everything through the slats! I laughed so hard first time we found a slew of clothes, formerly folded in a stack outside her crib, now providing a second layer of blanket INSIDE the bars. It’s a good problem solving challenge for her so I keep letting her do it. Tonight it was a soft book and a fake wood spare shelf. Tomorrow who knows… 

This Special Road: Giving to Others

I am repeatedly blown away by people’s support for our journey. Both dear friends and complete strangers praise our strength and give selflessly of their love. I admit it helps even if only for a second to know someone is recognizing it’s not an easy road.

But here’s the other side. I am reminded daily that we are so far away from being the worst of cases. And while our daily worries and struggles are exhausting, we have a more often than not healthy child, TWO actually! And we cannot be more thankful for anything on this Earth.

So, over the holidays, while I couldn’t make time to go give to others the way I wanted to, I did spend time filling up my heart with stories of other courageous mommies and their beautiful families. Theirs are the inspiring kind. The truly heart breaking and breathtaking that I admire now in a way I couldn’t appreciate before.

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A Mother’s Need to be Needed

We all know our mothers are awesome. They are special to each of us. My mom is a saint, really. She has always been selfless even as mommy standards go. She loved being needed and still does. She is a special, beautiful person for it. Especially when you consider that she had to put up with my attitude. I probably let go first when I walked into kindergarten and I know I was so excited to go to college I hardly thought twice about what I was leaving behind. It wasn’t that I wouldn’t miss things, I just embraced every adventure. It’s no doubt a good thing she was there to hold me back sometimes, make me slow down, be humble, try to save me from my “too big for my britches” self, etc. The overly-independent stubbornness must have driven her crazy at times. She and I are so different that way.

But that’s the thing about moms. It doesn’t matter what their children are like, they get to be there for them unconditionally. And even learn a little.

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A Successful Day in our Special Needs World

Wow. Feels so good and yet it’s so simple. When we started speech therapy a month ago we discussed her left brain limitations and the therapist suggested we start with right brain communication. Makes sense to me!

So that means musical/sounds verses words and reading. She also is somewhat limited by her fine motor skills so signing hasn’t gone very far yet. Enter pictures! We use cards at therapy to see what we are talking about and associate the sound with the object. Cow says moo kind of thing.

So we made a book of pictures of things from around the house. We’ve had some success with milk and puppy (her blanket).

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