Friday, April 8, 2011

Hard Day for Mommy

I think most Mommy's have hard days and it seems that those of us who have children with special needs have even more of those days.  Today was one of those days for me.  The thing was, nothing really went wrong today.  Did I wake up on the wrong side of the bed?  I don't think so.  Who knows why it happened, but I'm here admitting that it did...

I watched my nephew and his fellow kindergarten classmates at a spring concert today.  It was beautiful!  Children singing always sounds so sweet.  However, it also is really hard to watch that and not wonder how Sweet Pea is going to do in those situations.

This afternoon Sweet Pea was extremely whiny and she either wasn't understanding anything that I was saying or she was willfully ignoring it.  I often think she is just ignoring me, but today I really think that there were many things that she just wasn't understanding.  What seemed like simple instructions, "go get those pillows (pointing to them) and bring them here so you can climb up on the couch" would just bring a lost look and then tears because I wouldn't pick her up because I couldn't as I was feeding Angel.  We taught her on Wednesday how to use those pillows to climb onto the couch, but because they weren't right next to the couch, she couldn't seem to figure out what needed to be done.  I don't know if I just have unrealistic expectations of any child...maybe?  But then after 3 hours of her continuing to do things that I told her not to and not doing the things that I asked her to she finally got a time out.  I put her down and explained to her as simply as I could why she was there and then walked away and set the timer for 2 minutes.  For the next 15 minutes we had a time out battle.  She would sit and cry and then stand up and start walking away.  I would put her back and the cycle would repeat.  Finally she stayed there and I got down and explained to her why she had been put there and we hugged and she signed sorry, but did she really understand any of it?  Was she just mimicking like she so often does?  Was I just torturing her for no reason?

I think a lot of this is hitting me right now because I'm trying to get her moved out of the infant/toddler room at her daycare/preschool and into the class that every other child goes to on their 2nd birthday.  The director seems very hesitant and I'm trying to be as patient and understanding as possible, but I see why she would be concerned when I think about how little Sweet Pea listens or follows directions.  She is good at following her peers, but if she is asked to do something on her own, I think 9 out of 10 times she either doesn't understand it or chooses not to do it.  I tend to think that it is lack of understanding.  She is great at mimicking, but I think we often misinterpret that as her actually understanding instead of what it is...mimicking.  

During Sweet Pea's lunch today I was talking with another special needs mom and I mentioned how yesterday I was sitting listening to Angel babble and coo.  At 10 weeks old she is making a lot of sounds and they are extremely cute and just melt my heart...but at the same time they make me realize how hard of a road Sweet Pea is on.  She never made those sounds.  She has the expressive speech ability of a 10 month old and she is 24 months old!  Her sister is breezing through and seems to enjoy practicing different sounds while Sweet Pea struggles for every sound with her therapists prompting her and trying to help her.  It breaks my heart knowing that my little girl has to work so hard for something that should come so naturally.

It's not like I don't know that Sweet Pea has to work extremely hard for all of her accomplishments, but today it's just harder to face.  Knowing that her sister is going to pass her in skills in too short of a time is tough.  I may have passed my older sister in height, but I don't think I did in anything else ever!  :-)  I know that Sweet Pea is going to learn a ton from her sister and the two of them are going to be great for each other, but still...

So when I read the blog posting tonight by Kelly at "My Little Son-Shine" I realized that I needed to write a post to get it off my chest.  The Miley song "The Climb" hit me hard in the heart the very first time I heard it and continues to every time since then.  Kelly said it so well...

"To this day, every time I hear this song, I can't help but think of Landon and his future.  Before Landon turned a year old, I did a post with a video of Landon during the first 6 months of his therapy sessions.  If you missed it, you can see it HERE!!  This is the song that I chose to play during that video.....the words fit perfectly.  Watching Landon during his therapy sessions those first 6 months, was extremely HARD for me (AND LANDON).  After having 2 "typical" children, I struggled watching Landon work SO HARD, to do the smallest of things.  I remember thinking how unfair it was, that my newborn baby had to push his tiny little body to the point of total fatigue and frustration, just to reach and grasp for a toy.  My heart felt so heavy for him (and still does at times).  You see, it doesn't end here.....Landon is going to face challenges (MOUNTAINS) his whole life.  He is going to do all the things that his friends do, but it is going to take him a little more time with a lot more effort.

Landon tackles each hour long therapy session with such WILL and DETERMINATION!  He smiles, he laughs......and he cries a lot too!!  Yes, he WILL reach his milestone's....and we will be right by his side celebrating each and every one of them!  Each and every achievement is that much sweeter when you know just how much work and effort was put into it.  You see, it's not about "what's waiting on the other side"........"it's the CLIMB"!!!"

This blog has been such an amazing way for me to sort things out that are scattered in my brain.  It's allowed me to grow so much and when people ask me when I'm going to stop, I honestly can't tell them when.  I hope to never stop if it continues to be such a therapy tool as well as a great way to chronicle the lives of my children.

Thanks for letting me vent and I think tomorrow will be a better day...these pictures will help...

Look at how her fine motor skills are coming!  Yes, I helped place the crayon, but she will use it that way!

Sweet Pea loves her little sister

She loves to put her head down next to Angel

And giving her a hug

Entertaining her little sister

I love that Angel is smiling at Sweet Pea

Even hugs in her car seat!

And finally...Sweet Pea trying to sit in Angel's car seat.  She was climbing out when I finally got the camera out, but it was very cute.


  1. It's so good to get it out. And so many of us understand. The gap widens as our kids get older and I don't know if we will ever fully come to grips with the reality that there is a delay. But I always remind myself of that quote that says, "Having a child with Down Syndrome is like taking the scenic route. It may take a little long to get there but the journey is worth it. Blessings

  2. I am so sorry you had a day like this but I truly think it is a necessary part of the journey.I think it is so important to vent and voice our fears and our disappointments and our sadness.The key is,how long do we stay down.And by the looks of it,it wasn't long ... your picture of Sweet Pea drawing,says it all ... you rejoice in the things she does do and has accomplished.Which is beautiful.

    I totally get it.Trust me.Ella's party was such fun and I wouldn't have missed it but it was an in your face time to see just how behind Zoey is from her peers.But that is reality and I accept it for what it is and that her road has had a few more obstacles than others.and then there is my grandbaby staying with me ... talk about a not yet 2 year old reality check..

    Hope your weekend is wonderful.Enjoy those beautiful girls.

  3. Thanks for your honesty. I know exactly how you feel. In some ways my 2 yr old doesn't seem so different from his "typical" peers, but in other ways, he seems light years away to me. My friend's daughter is only 6wks older than my son & when I hear her talking up a storm (my son only says 4 words) or I learn about how well her potty trainging is going, etc, etc...sometimes it gets to me. I know that my son is bright & that eventually, he will catch up with his peers, but some days are definitely harder than others.

  4. I can not imagine how hard it would be to have a younger sibling for my times heartbreaking for your child with Ds. BUT, having a sibling is SOOOOO good for Sweet Pea and it will teach her so much! We all go through hard times and get down, but things will look up again soon!

    As far as the Kindergarten program...Ella has had 3 programs in the past 2 years of preschool and has totally blown me away, she has stayed up there, sang what she could, and done all of the movements. She loves doing what her "typical" peers are doing!!! I never thought in a million years Ella would willingly stand up there and perform, and yet as usual she proves me wrong : )

  5. This is a GREAT post...thank have put into words what I have been did it with grace and perfection...thank truly made my weekend!! your have two pretty girls...smiles

  6. We use The Climb for Chloe too. Initially it was representative of her medical issues, but we knew that it would also represent the continual mountains she will have to climb. But the song says it best, it's not about those mountains that makes life full and enriching, it's about the journey. . . "the climb" that makes our lives fullfilled and adventurous and meaningful. I'm actually listening to it right now. :) Hang in there. We're always going to have "those days", but in the end Sweet Pea is who she is in part because of those mountains she WILL tackle and although we want our kids lives to be easy, it helps make them into the wonderful unique individuals they will become. And Angel will have her own mountains to climb, they just might look different.

  7. We all have those moments. It's good to get it off your chest, too. We just have to remember, the lows are going to be low, but the highs, reaching those milestones, are going to be HIGHER!