Toddler Thursday: Getting the diagnosis…. Then (whew!) finding out it is wrong

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As a parent you will do anything to make sure your kids are safe and happy. With the first baby especially, you stress and worry and panic and wonder if you are ever going to do anything right. My oldest was an early talker, a very early talker and a late walker. I had always heard that you either talk or walk – that babies focused on one area of development at a time. She talked early and walked at 17 months. Perfectly reasonable and within “normal” ranges, so it is fine.

Fast forward to twins.

Again, I stressed, I worried and I wondered if I would ever get anything right. Don’t get me started on sleep. The twins are now 2 ¾ and we still have sleeping issues…. The boy girl twins, like my older daughter, were early talkers. And late walkers. Sidney walked at 17 months just like big sister. But Spencer did not. He did talk early but at 17 months was not walking. It is ok, he will get there. And at about 18 months he took 5 steps into my arms. And I cried and screamed and attacked him with kisses.

He did not walk again.

He did not even cruise.

At 19 months I emailed the pediatrician and said, “I know you are going to tell me not to worry but at 19 months Spencer is not walking yet”. Her reply was like a dart into my heart. “Maybe we need to get him evaluated.”

I called Birth-to-Three and after a scheduling nightmare I gave up and called the pediatric rehab center on my own. My mother-in-law came with me. Her job was to listen to everything I missed and hold my hand. She did great. Spencer did great. I did not. In my defense, I did not mesh well with the therapist. I am 100% positive she is very qualified and good at her job, but I constantly felt blamed. “If you don’t pick him up he will walk.” That comment had me in tears. And had Spencer in tears. I will never forget his baby arms reaching up for me and his baby screams while this (evil) woman tells me that he is not walking only because I pick him up.

The therapist would hold toys just out of his reach and try to force him to reach for them to build up him muscles. Spencer would give up and move to a different toy. And I don’t blame him. But she did recommend that he wear braces on his ankles.  So I consulted with the pediatrician before making that appointment. She laid Spencer on the exam table and moved/manipulated/rotated his legs. She called them “spaghetti legs”. She could move them in any direction. His muscle tone was low, but she did not think that was a huge cause of worry, he could build up the muscles.

But she saw something else in his legs. “Beth, I want him to see a pediatric neurologist, I think he may have Cerebral Palsy”. And that was all I heard. She did talk me down (ish). She reminded me that if he did have it, it was not the end of the world, it was not a brain tumor (ok, an extreme example but she had a point).

First step, ankle braces. So we made the appointment and Spencer was fitted with baby ankle braces. Everyone told me that these braces were a miracle and that the minute they were on, their baby walked.  Spencer did not. (In his defense they measures the braces wrong and needed to redo them so he wore the wrong ones for a week or so…) Slowly, slowly, he started taking baby steps. But he still preferred crawling or being carried.

And then, one day, with my heart in my throat, I watched my baby boy walk. Those tiny little dinosaur printed ankle braces changed our world. At 21 months, Spencer walked barefoot. He had full control, turned, pushed toys, carried toys. He was there. I tear up now remembering that day.

With my mother-in-law in tow, we took Spencer to the neurologist.

You know when you have those days where every detail sticks perfectly in your brain? That day was one of them. The neurologist pronounced my son (he actually evaluated both kids and pronounced them both) as “perfect”. He said Spencer did have low muscle tone but that he did not even need physical therapy or the braces. I kept him in the braces for a few more months anyway because I bought a new wider pair of shoes to accommodate them. When he sized up in shoes, he left the braces behind.

My gorgeous, amazing, funny, cuddly, little man is perfect. He runs (not well and not fast, but he gets places faster than walking). He might not be a soccer player or football player but that will mean less concussions, so I am good with it. And one day, while waiting for big sister’s school bus, he jumped up in the air. Both feet off the group, jumped into the air. My baby boy. I have never been so proud.

Really, when he plays with his friends you would never know what we went through in the spring of 2014. We still have some work to do though. He does not like stairs and prefers to be carried, especially when he is tired. When we hold hands on the stairs, he turns his foot inward and we want to work on that.   When he moves to preschool, he will need to be able to walk down a long staircase to the playground and that staircase does worry me. But we will take it all day by day, step by step and now jump by jump.

As a mom you would do anything for your kids, and if Spencer did have Cerebral Palsy, we would have researched and become the experts at CP. It was only a few months. And in the grand scheme of things, it was nothing. But it was also everything.

I would check on him at night and put my hand on his back and watch him breathe and stroke his cheek and wonder if he would be able to walk without braces, if his peers would be cruel, how a disability might affect him and our family. We are so blessed that we don’t have to worry about these things. But if I ever do, I know that my support system is strong and I want to publicly tell everyone how fabulous the “how do you do it” group is. Because they got me through the beginning. They were a huge help in getting me from the emotional stage to the logical, research nerd stage. You need the emotional part. You need to cry when you get news like this, but you need to hit that research stage hard as well.

Our lives are “normal” now (or as normal as life with toddler twins can be). When I take the twins down the stairs, I hold hands and lead them down one by one and that is our normal. I help Spencer turn his foot on the stairs and that is normal for us. But when he does not want to come inside, I chase after him and now that is normal too. And even while I am chasing after him, I know how blessed I am to have a baby boy who can run away from me, as long as he never ever runs into the street!

 

Beth is known as mommy by a 6 year old and boy-girl twins who are almost 3.  She blogs about life, kids, and DIY, at Pickles in my Tea and in my Soup.

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But they're the same age, so they should be doing the same things

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When you have two (or more) babies who are the same age, it can be hard not to compare them.  For the first 9 months of their lives our girls were very similar in temperament.  There were a few differences, but generally the behaved very much alike.  And, just when we thought we had a way to tell them apart like one was more active than the other or one slept more than the other, they would switch.

Around 9 months, one of our girls figured out how to move.  Slowly at first, then faster and more deliberately.  It took almost two months before her sister started moving; she was content to stay in one place.  I didn’t really consider this difference in their desire to move – I don’t think it had to do with ability as much as motivation – as a problem.

At their one year check up, the pediatrician mentioned that both girls seemed to be on the slower end of the developmental spectrum for gross motor skills (standing, walking, etc).  He said he wasn’t concerned because all children develop at their own speed, but he wanted to see them again in 3 months to follow up. Again, I wasn’t too concerned.  Their big brother didn’t start walking until 16 months.

Since that appointment about 6 weeks ago, one of the girls (the first to move) has become much more active. She can roll over, get from lying down to sitting, pulls herself up to standing, sits down from standing and walks holding on to furniture or a hand.  She’s clearly getting more active, and I’m sure she’ll be where the pediatrician expects her to be by the next appointment.

Her sister is learning things more slowly. Just this week, she figured out how to go from lying down to sitting.  She’ll stand leaning on the furniture, if you can get her in position. When she’s had enough, she’ll fuss until you sit her back down.  I’m not as confident she’ll have achieved the milestones as soon.

It is hard to look at both girls and not compare them.  It takes patience to help them both at their own pace, to celebrate their achievements as they come. But I try to remember that a year from now being a few weeks apart in learning to stand up won’t really matter.  One isn’t ahead and one isn’t behind; they are both learning as they are ready. This is a lesson we’ll all have to keep learning. And the sooner I learn it, the more I can help them and support them as they grow. I’m sure they will face people who expect them to have the same abilities and interests, and that’s when they’ll need to count on their family to affirm they are each unique and valuable as individuals so they can help other realize it too.

How do you encourage your multiples when they are learning at different speeds?  Do you have any ways to remind yourself not to compare them?

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