A Voice Unheard

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.

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.

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.

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.”

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.

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.