Update to themed activities

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Going on week three for the ‘themed activities.’  Here’s a quick recap, followed by some video of Claire herself in the midst of the action.

We went with a St. Patrick’s Day theme for week one.  It started off a bit shaky.  I wasn’t sure if she was really into this… especially when I told her ‘no electronics’ and we were going to do some other work.  Slowly though, she warmed up to this idea.  And just as she was warming up to everything, I ended up getting sick, which put things on hold for a little bit.  Claire’s physical therapist, Amanda, helped remind me though that it was okay if the “theme” lingered on for more than one week. 🙂  Thank you, Amanda!!  You are very right — life gets in the way (but hearing this also made me relax a bit when we approached the second week and I did not have anything new planned.)   Setting the expectations of having a new theme each week is great in perfect land.  But we don’t live in perfect land, and as I type this, there’s a sink full of dirty dishes, and my goodness, the laundry is overflowing, along with emails and phone calls unanswered, piles of stuff to put away in each room, etc.   But today, Claire and I had a great day, I made a great dinner (why great? Everyone loved it… I’m considering this a win, as it’s not often this happens) and I had some wonderful quality time with the boys when they got home from school.  In perfect land, I can wear all of the necessary hats in a given day and wear them well.  In Reilly reality land, if it takes me a couple weeks (instead of one week) to accomplish a “themed activity” or any activity or project for that matter, I’ve learned to be okay with this, as there is only so much time in a day.

So back to the themes….  we stuck with the St. Patrick’s Day theme for two weeks.  This week, we are focusing on Easter.  Here’s a video (and some pictures) of what we’ve done so far.  It may be tough to see as you look in from the outside, but below are some examples of what (and why) I chose these activities.

The Easter Egg hunt, and the other activities accomplished the following:

1. Physical Therapy – Claire worked on her motor planning and walking skills.  She often knows where she wants to go, but telling her brain how to get there and actually doing it is challenging for her.

2. Each Easter Egg was filled with cheerios because I wanted to incorporate part of her breakfast.  We filled up six eggs, and we got that number from a “Spot Easter Egg Hunt” book we decided to model.  I added an extra egg filled with jelly beans though.  Jelly beans for breakfast too?  Why not.  Added silliness is a bonus.

3. Occupational therapy – She used her ‘fanny pack’ to help gather the eggs since she cannot hold a basket.  We then practiced hand over hand so she could put each egg in her pack.  Later in the video, you’ll see her practicing her OT by attempting to feed herself cheerios.  This is often times hit or miss… but practice is important so she doesn’t lose this skill moreso than she already has.  Finally – we put Easter/Spring objects into her sensory bin, and we played with that.

4. Music – We incorporated a funny bunny song, and she loved this.

5. Math – We counted the eggs, and sorted the cheerios from the jelly beans.

6. Colors – We described each color… followed by her watching a Baby Einstein video on colors.

7. Pretend play – She dressed up as a bunny.   We also pretended she was Spot, gathering his eggs.

8. Art – She colored an Easter Egg, and additional Spring coloring book pages, and decorated each one with Spring stickers.  I helped her by doing this activity hand over hand (OT), and we listened to a few more Easter songs at the same time.  We “puuuushed” the stickers onto the pages, using her left hand, since she’s lost ALL movement in her left hand – any attempt to try and get this back is worth the practice.

9. Speech – I’ve recently learned the Boardmaker software program (I love it!), and therefore was able to customize and print out a “play page” for her.  (see picture)  I also used the iPad to customize other activity boards, where she chose the next activity, and we would go from there…

I am liking these themed activities.  They help me organize my days, activities, therapy homework and thoughts.  There’s a little bit of preparation that goes into each theme, for sure…. but it’s fun.  The boys are really enjoying this as well.  They get excited to join in and that makes everyone, especially me, happy because they are all enjoying an activity together.  Win win, for all.  Happy Easter!!

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Peace

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One month from today, our little girl will be turning 3.  Yes, 3.  Turning 3 may not seem like a huge deal, but to us, it is.  Why?  It’s because we are now experiencing the reality of a word that before, was just a very distant thought.  We are becoming familiar with a word that has the tendency to create cynicism even among the most optimistic people.  What is this word?  IEP, also known as Individualized Education Program.  I cannot help myself from posting this funny picture below.  Obviously, nobody would put hot sauce on crayons, but it does give you the idea of how IEPs are viewed at times.

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Claire will soon be going to school and we will be working with the school to agree on an IEP for her.  It may sound simple, but as we are going through this process, I’m finding that this is everything but simple.  Claire’s IEP will need to be very detailed given her challenges.   We’ve had multiple meetings with the school to discuss Claire thus far, and these haven’t been easy.  She was evaluated by the physical therapist, speech therapist, occupational therapist, school psychologist, augmentative communication expert, and the vision specialist.  They all seem like a great group of professionals.  In fact, after talking with different parents of the school, I am told how happy they are with their decision to send their child, and furthermore, how well their child has progressed since starting.  That gives me hope.  However, my concerns are still there.

First of all, it’s hard sending Claire off into the world, knowing she can’t talk and tell me about her day or if something went wrong.  She can’t use her hands for any type of movements.  She can’t sit on the concrete floor without something behind her because she’ll throw herself backward if frustrated or bored.  She cannot walk independently, sit on a bike, or attempt to go on a swing or a slide.  I know I shouldn’t have compared her to other kids when she was getting evaluated, but I did, because it was right in front of me.  I couldn’t help but notice that they were so much more independent than Claire.  I worry that she’ll not be able to keep up, feel included, or just somehow get lost in the crowd.   We were told she wouldn’t have a 1:1 aide, but Claire most definitely needs one.  Reason 1) safety, and reason 2) to encourage (and help her) get the most out of her learning and play experience.  A 1:1 aide is one thing we’ll need to fight for since we feel she needs one and they feel a 1:1 aide prohibits independence.  I understand this but Claire’s case is different.  She needs the 1:1 to basically be her hands, help her use her ‘voice’ and assist her with each activity.  In addition, the school’s concern is that when a child gets a 1:1 aide, they become too attached to one adult in particular, and that’s not a good thing. Again, I see this point, but in Claire’s case, I’d rather her get too attached (and have to deal with change, as we all do from time to time when people move on to different things) vs. not giving her the chance to fully participate with her peers.

It was tough when the physical therapist told us she knew all about Rett… and then asked Claire to hold a ball and stand.  Due to her apraxia,  it would be near impossible for her to do both at the same time.  Claire fell hard and hit her head.  We were 5 feet away, watching.  The physical therapist was right with her.  It happened so fast.  Claire has a high pain tolerance and doesn’t cry much if she hurts herself.  She cried hard, and seeing this was difficult.  At this moment, I was cynical.  I thought, “we are right here and this happened… what’s going to happen when we aren’t here?”  Along with “why would you ask her to do this if you really knew about Rett?!”    I actually did ask them the second question of “why would you ask her to do this if you truly knew she wouldn’t be able?” and the answer I received was that it was a standard evaluation and they do that for everyone.  That didn’t sit well with me.  I don’t understand that logic since that would have put her in a position where she wasn’t safe.  Who knows… this may just be the beginning of having to grow an even thicker skin myself, or to remind myself to take deep breaths when things don’t make sense.  I do understand that certain processes are important to follow… to a point.

We are meeting with the school again in the upcoming weeks to continue this IEP process.  She’s supposed to start on April 8th (her 3rd birthday) but the more this process unfolds, the more I’m thinking we will hold off sending her right away as we originally planned.  Truthfully, it boils down to comfort level and right now, I don’t think it’s the right time.  Sean and I made this decision this week, and I have to say… I feel a little less stressed (worried) and a little more at peace.  Am I just delaying the inevitable because right now it’s “easier”?  Maybe.

As soon as we made this decision, I got excited.  My plans for her at this moment have changed.  I immediately signed her up for a music class because out of everything, she enjoys music the most.  She’s going to love being around the other kids – an added bonus. Secretly, I’m excited to have this “fun” time with her as well.  It’s not therapy.  It is just a series of mom/daughter moments that we’ll share.  I also signed her up for library storytime.  Finally (and this is where I especially get a bit giddy), I  went to a local teacher retail store this past week, and stocked up on early childhood education learning tools.  I purchased a book that gives you ideas on how to set up weekly lesson plans according to theme.  I also bought an actual lesson plan book, which will help me plan each week with whatever I decide to implement.  Each activity will need to be modified not only to give Claire a chance to do things “her way” but it’s another opportunity for me to build in her in home therapy homework.  I want this to be fun for her and I think it will.  I need a plan to follow myself or else I’ll get lost or distracted in the everyday shuffle.  I always wanted to be a teacher, and when I was at this teacher store looking through everything, I was in heaven!!!  My ideas were flowing and now I just need to put them to practice.

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At this time, we’re hoping she’ll be ready in the Fall to attend preschool.  I’m pretty sure she will, and I know it will all happen when it’s supposed to.  It’s just about communication and patience, and trying to understand the needs of the child – and for us to really help explain to others what will be best for her.  It’ll be okay.  We’ll continue to partner with the school to make this happen.  In the meantime, I will try and bring a little more “life” and imagination to the home front, with regards to learning and my “lesson plans.”  (ha ha – love this!)   And if, come Fall, it’s still not the right time to send her, I’m okay with this too.  We’ll figure something out.  Whatever is best for Claire… that is all that matters.

It’s funny how a simple decision can bring you a bit more peace than perhaps the day before.  I’m going to continue to work hard to get her into the right school and setting.  In the meantime, I will most definitely enjoy this whole teaching thing myself, while perhaps even a music class or two with my bright blue eyed little girl.  🙂

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– Colleen