A Voice Unheard

twobirds

If there’s one thing I’ve learned since becoming a mom, it’s that no two kids are alike. Every kid grows at different rates, hits milestones at different times, and one single approach doesn’t work for everyone. It frustrates me to no end when we go to the pediatrician appointment and we hear how she rates among other kids – her weight, height, and other developments. I hate that we compare kids. Rather than acknowledging that Willow has never been sick, she’s happy, full of energy, and sleeps well, we pick at where she stands on those darn charts. If you’ve read my blog post about Willow’s birth, you know that it was difficult emotionally, mentally, and physically. These last two years, we’ve had our fair share of challenges, but nothing we couldn’t work through – this challenge I’m going to talk about though is different, one that makes me feel very alone.

Most parents get to hear their child’s first word somewhere between 9-18months. Most kids will make sounds like “ba-ba” or “da-da” which eventually turn into actual words. Willow turned 2 in April and we’re patiently waiting to hear that. She’s a very smart kid, understands everything we say, follows directions well, but just doesn’t open her mouth to say anything. We joked for months, saying that she was “speaking French” because she does this closed-mouth jabbering. She opens her mouth to scream or cry, but words have yet to slip out.

007

The meltdowns, tantrums, and cries happen on a daily basis…and not just on Willow’s end. Our days can be exhausting – the frustration gets the best of us sometimes. I can only imagine how upsetting it must be for Willow to not be able to communicate her needs and feelings like we can. Since she can’t use her words, she does lots of pointing or will grab our hand to lead us to what she wants. Most of the time it’s a guessing game, but we’ve learned to differentiate her cries and jabbering. I’m ashamed to admit that I’ve lost my patience a few times and have broken down and cried in front of her…I’m not proud of that.

I have a few friends who assured me that she’ll talk when she’s ready and that there are kids who didn’t talk until they’re 2 or 3 years old…heck, Einstein didn’t speak until he was 4! I wasn’t concerned at all, just anxious to hear her voice. Willow was late to crawl and didn’t walk until she was almost 15 months old – and rather than taking a single step, she walked all the way across the room. We chalked it up to her being a perfectionist! Which is another reason we were so laid back with her development – we had the mindset, “She’ll do it when she’s ready.”

But between her pediatrician and all the comments that had been thrown at us by family and friends, I found myself crying a lot and started to think that maybe we needed to take action. Comments such as, “There must be something wrong with her,” or “Wow, my kid is speaking in sentences already.” At her 2-year wellness check, the pediatrician voiced her concern and told us to take Willow to a speech therapist. It wasn’t until a month later that we decided to make a call. Unfortunately, insurance wouldn’t cover the visits, so we were looking at spending a couple thousand, at least. Now, I would do anything for my daughter, no matter the cost, when it comes to health and well-being. But that seemed a little steep for a family who just bought their first house. Thankfully, my mom looked into it and found a program that is free! The Alyce Hatch Center is home to a number of programs designed to fit your child’s needs. We took Willow in for an evaluation on July 7, 2014 and that is when she was diagnosed with a severe developmental delay in expressive communication. For just short of two hours, we sat with a speech therapist and a physical therapist who ran a series of tests, watched her interactions, how she played, and we had to answer a series of questions. Willow’s results showed that she scored high or average in all areas except communication. Throughout the evaluation, we learned some areas that we could improve on as well as some tips. Overall, the experience was extremely helpful. Later this month we’ll start setting up some appointments where a therapist will come to our home to work with us.

katiedaisy

After that appointment I started blaming myself and questioning what I could have done differently or where I went wrong. I couldn’t help it. I’m the one who is with her all day and night. In my eyes, she’s this perfect little being and it made my heart hurt to hear “severe developmental delay.” I took time to process it all and think about everything we learned from the evaluation. My mom encouraged me to write a post about our experience in case there are other families going through a similar challenge. There might be parents out there who need some reassurance that they are not alone. So I wanted to also share some of what we learned – things we never would have put together on our own.

Some things we learned….

  • Strider Bikes are great for balance, but don’t work both parts of the brain…we were told to get Willow a tricycle – we found one on the way home from the evaluation from a used baby/kid store for $13!
  • Use sign language! We had tried to teach her sign language when she was very small, but she had no interest in learning. My advice to all parents or parents-to-be, start young and don’t give up. In the two short weeks we’ve been using sign language, Willow has learned: ‘help,’ ‘more,’ ‘cat,’ ‘eat,’ ‘drink,’ ‘sleep,’ ‘tree,’ ‘angry,’ ‘gentle,’ ‘whale,’ ‘ball,’ and ‘bowl.’ We still struggle some days to get her to sign, but we try a little each day.
  • Don’t use straws all the time. Kids need to drink from a regular cup to use their mouth, to open it and it works a different part of the brain. We use straws in the morning for smoothies, but other than that, she’s drinking from a regular cup really well.
  • They suggested using a 2-3lb weighted yoga/exercise ball to help work her muscles in preparation for speech. She passes it back and forth and lifts it like it’s nothing!
  • Blow bubbles!
  • Use straws to blow cotton balls across the table.
108

Willow loves to play with water and rocks…it’s the simple things!

Like I said before, Willow is a bright kid – she knows her numbers, colors, shapes, animals and puts together the United States of America puzzle together faster than my grandmother! She’s a super happy and affectionate kid – Her hugs and kisses melt my heart, but I long to hear those three little words, “I love you.” I even dream about her saying, “mama.”

She’s a master at drawing circles.

Lately she has been making some animal sounds, most of them are done with her mouth closed…but her ‘lion’ makes me cry because I feel like I’m getting a glimpse of what her sweet little voice sounds like. We picked up some really great flash cards in the $1 bins at Target and she loves the animal cards. Yesterday she wanted to play with them and it was amazing to watch her pick up a card and make the proper animal sound or gesture. It gave me hope that there is a voice inside that little being just waiting to come out.

115

My mom also stumbled upon this really great blog – so if there are any parents reading this who are in the same boat we are, I encourage you to check it out – Finding Cooper’s Voice. It hit home for me while I was reading it last night and tears just came pouring out as I found myself saying, “Me too,” and “Oh, my goodness! That sounds like Willow.” I found a sense of peace and comfort knowing that I wasn’t alone and I know that I’ll be emailing Cooper’s mom for support and guidance.

If you have a child who seems to have some delays, I encourage you to Google Early Intervention & Early Childhood Special Ed (EI/ECSE). Services are free and designed around your child’s needs.

 

If you happen to live in Bend, OR, please check out The Alyce Hatch Center http://alycehatchcenter.org/

I appreciate you stopping by to read this personal story!

Lots of love.

6 thoughts on “A Voice Unheard

  1. Willow is so beautiful!!! The picture with the flash cards is too cute!! Our kids sound so similar and I know the feeling of wishing and praying for them to talk. I’d kill yo hear Cooper say I love you and mama. And tell me about his likes and dislikes. I even dream about him talking. Like I said, email me anytime. I’m here for you! Hugs!!

    Like

    • Thanks for reading my post! If only we could read their minds, right?!? Your blog is so beautifully written and I am grateful to have found it. I’ll definitely be emailing you in the next few days. xo

      Like

  2. I have been meaning to comment on this for days but just haven’t had a chance to get on the computer until now!
    This post of yours demonstrates the exact power of a mother’s love. I know I’m not a mom and I know I don’t know you in real life, but I can tell that you are the sort of mom that a sweet girl like Willow needs. From your nutritious breakfasts, to your afternoon activities, to your determination to help Willow grow, I know she is going to be just fine. They say all kids are different and it is so true! My niece (2) and my nephew (4) are polar opposites. My nephew was born 14 weeks early (26 weeks & 1 day of gestation) and has had countless obstacles to overcome. He is doing great now- bright, healthy, and happy- and is just a little small for his age. It has taken him some time to make the milestones that other kids his age are making and I know it’s hard for my brother and sister-in-law but they are patient and do everything they can to support him. They’ve chosen to have him start school a year later to give him a little extra time to catch up so he doesn’t feel behind or look much younger than the other kids. But honestly, he is such a smart boy in so many ways! Being a preemie hasn’t affected him other than in size. I have a cousin who was similar to Willow in being slow to verbalize. Even though my cousin had an older brother who was walking and talking, she did not say a single word until she was more than 4 years old! Now, (age 17) she is honestly one of the smartest and most loving girls I know. She is on a trip to New Zealand this month! Jealous.
    Anyway, I just wanted to share some personal experience stories in hopes that maybe you’ll feel less alone in this. Like you said, “Willow is a bright kid.” I’m sure it has been so tough waiting for those first words but they will come! The day that she says her first sentence will feel so rewarding. There is *nothing* wrong with your beautiful baby. Even if she sprouted wings and started speaking another language, there would still be nothing wrong with her. She would still be your wonderful girl and you would love her just the same. Just because she isn’t verbal yet does not mean that she isn’t smart or creating a whirlwind of thoughts inside her head. Doctors and family/friends can say/speculate on whatever they like but Willow just needs to do things in her own time. It’s like with potty training; they’re ready when they’re ready and no amount of pushing will make them change their ways. You have an amazing family and Willow is so fortunate.
    *It’s 12:30am and I worked all day, then came home and cooked dinner and just finished three hours of homework so I’m a little out of it and I hope some of this makes at least a little bit of sense! It really does come from the heart.
    -Robin

    Like

    • Robin, thank you so much for your comment! Isn’t it amazing how different kids can be?! I really appreciate you sharing about your niece and nephew, as well as your encouraging words. Everything you said makes perfect sense! Thank you so much for the support – lots of love.
      ~ Mandy

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s