Special Needs Spotlight || Charlotte

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Miggy: Hi Betsy and welcome! Thank you so much for sharing your family’s special needs journey, especially your daughter Charlotte. Let’s start at the beginning, when did you first know Charlotte had some extra challenges? Was it before birth, shortly after or sometime after that? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?

Betsy: Charlotte was our first and she couldn’t have been more perfect. Even the sleepless first night in the hospital was a blessing. But by Charlotte’s one week checkup, we noticed a bump on the side of her head. By her one month checkup, we were told she had an asymmetric head shape (Positional Plagiocephaly) and had limited range of motion in her neck (Torticollis). By her two month checkup, Charlotte was seeing a physical therapist for her Torticollis and at four months was outfitted with a helmet to help correct the shape of her skull. When the helmet didn’t help, this persistent mom knew something wasn’t right and insisted the doctor order an X-ray. A few days later, I got a call at work and remember feeling like I had the wind knocked out of me. 

The doctor said Charlotte had Lambdoid Craniosynostosis and casually explained that they would have to remove her skull, reshape it, and put it back on her head during something called Cranio Vault Reconstruction. We also found out Charlotte has Chiari Malformation. My husband and I had trouble digesting that and then having to explain that to our families, let alone pronouncing all of these diagnoses. Once I got over the initial shock, I knew we could get through it. My dad had just passed away from lung cancer the month before and so I was just thankful this was was something the doctors could actually fix. We flew all the way to Dallas to have the surgery done and the recovery went well. Things were going great.

But Charlotte’s challenges continued. She was significantly behind hitting her sitting, crawling, and walking benchmarks. She lacked the coordination and gross and fine motor skills we saw in other children her age. She wasn’t saying any words. She was constantly the new rare case with the pediatrician. By the time she was 3 years old, she had been in physical therapy nearly her entire life and speech therapy for about a year. We got her into preschool on an IEP to augment her therapy sessions and to be introduced into a classroom setting with other children. One day before Christmas break her speech therapist nonchalantly told me that Charlotte might not ever talk. Excuse me? I knew she was behind in speech, but I thought being around kids and seeing speech therapists would catch her up. So, I frantically went home to start Googling and called her pediatrician. Shortly after that, Charlotte was diagnosed with Childhood Apraxia of Speech and Global Development Delay.

Hearing anything is wrong with your baby is never fun. The initial shock was terrifying to say the least. Once I wiped away the tears I realized I am the only one advocating for her and I haven’t looked back since. I don’t listen to doctors or therapists that tell me Charlotte will never be able to do something. I move on to someone who is willing to work with us. Charlotte is a champ and goes through life with a big smile, so I will too.

Miggy: Can you educate us on Charlotte’s diagnosis and how they affect her and your family’s day-to-day life?

Betsy: Craniosynostosis is when a suture (soft spot) in the skull has fused too early. It affects around 1 in 2,300 births in the United States. Lambdoid Craniosynostosis involves the sutures along the back of the skull and is extremely rare. Sutures fusing too early causes the skull to compensate and grow in an unusual shape, putting pressure on the growing brain. But after her surgery, all that reminds us of that now is a zig-zag scar and a not so perfectly shaped head – but you would never know with all her hair.

Apraxia is a motor speech disorder that makes it hard for Charlotte to say sounds and words. To explain it to people, I say that Charlotte knows what she wants to say, but her mouth can’t form the words. There is a disconnect between her brain and her mouth that makes it difficult to plan and produce the correct movements of her tongue, lip and jaw. A lot of people confuse this with a speech delay. They think “oh my granddaughter was a late talker so she will start talking any day now too”. The difference is that a delay is when a child’s speech is developing in the appropriate order just at a slower rate. A speech disorder (such as apraxia) is when their speech and language is developing abnormally.

On top of that, Charlotte’s Global Development Delay means that she has delays in gross motor, fine motor, and cognitive areas as well. It takes her much longer, with a lot more work, to master the skills that come easily to others like jumping or kicking a ball.

All of this greatly affects her day-to-day life. She is 4 years old and only has five intelligible words. She babbles constantly. It is getting to the point that kids her age are talking while playing so Charlotte can be left out. So far she has never showed this has bothered her. She is ALWAYS happy and loves everyone. The other issue is obviously frustration with not being able to tell us what she wants and needs. Charlotte now has an augmentative communication device – a fancy way of saying and iPad with a speech app – that lets her tell us what she wants. She LOVES being us to tell us she wants chocolate milk and M&M’s! Charlotte gets physical, occupational, and speech therapy at her school. She also goes to private speech therapy four times a week and when we can fit it into our already packed schedule, physical and occupational therapies.

Miggy: What are the biggest worries you face for Charlotte? On the flip side, what are your hopes and dreams for her?
Betsy: My biggest worry for Charlotte is others hurting her feelings or making her feel like something is wrong with her. She is so happy and innocent right now and I just want to keep her wrapped up in all the love she deserves. I don’t ever want someone to make fun of her or hurt her feelings. I’m sure that every mom feels this way whether their child has a disability or not. I have so many hopes and dreams for Charlotte. My biggest hope is that she always stays this happy. She has the ability to light up a room with her smile. Just trying to describe her makes me smile. Anyone who gets to know her is lucky and I hope she always knows that.

Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations? 
Betsy: Every new sound that Charlotte makes is exciting to us (and her). So when she said “no” for the first time, naturally we were ecstatic. This happened when she was around 3 1/2. But that excitement quickly turned to something else when we realized it came with a sassy 13 year old! Everything I told her to do was quickly returned with a “no” with A LOT of attitude – so my innocent baby was gone. I started to wonder what all this hype of having your kids talk was all about (only kidding). We couldn’t help but feel proud for her and let her live in this glory as she was able to verbalize a feeling. However, I have to admit that it didn’t take long for this to fade and for time outs to start for telling mommy no!

Miggy: How can people–either friends or strangers–best approach or respond to Charlotte? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Betsy: I wish people wouldn’t be afraid to ask questions. I don’t get offended. There are reasons why Charlotte can’t talk like a typical 4 year old or why she can’t run and kick a ball as well as everyone else. I want people to know the struggles she has so they can understand her better. Charlotte can understand everything going on around her even if she can’t communicate as well as she would like. I think educating people is so important!

Miggy: If you could say something to the mom who just starting on a similar special needs journey, what would you say? What would you say to yourself if you could go back in time?

Betsy: It’s going to be okay. There will be days when you feel like you can’t fight insurance anymore and just want to give up. There are days you think you can’t drive to one more appointment. There are days you cry thinking about what a long road your sweet baby has in front of them. But after you wipe away those tears you know it is all worth it. As a mom you’ll do anything to help your child. Those are just little bumps along with way. No matter what label your child is given, it won’t change who they are. They will always be perfect in your eyes and you should enjoy every moment with them. The one thing I ask myself every night is “was she happy today?” As long as she is happy and continuing to make progress I know we are on the right track.

Also, don’t be afraid to challenge the doctors, nurses, therapists, or insurance. You are your child’s advocate. I am a very non-confrontational person, but if I don’t think my daughter is getting the best care or service she can I am going to fight for her. There was a time after her cranio surgery where I didn’t even recognize myself. After being awake for 36 hours no nurse was going to forget her dose of medicine 😉

All anyone wants for their child is for them to feel safe, be happy, and to live the best life possible. I don’t know what lies ahead for Charlotte. I will always continue to push for her to overcome her challenges and do everything in my power to help her. But at the end of the day knowing that she is happy is all that matters.

Miggy: What is the biggest lesson you’ve learned since becoming Charlotte’s mom?

Betsy: The biggest lesson I have learned is that my kids can teach me much more about life than I teach them. All of the little trivial problems I had before having Charlotte don’t seem so important anymore. The happiness and well being of my kids is the most important. Charlotte has taught me to live life to the fullest. Every day is exciting and fun for her. She walks out the door with a huge smile on her face ready to conquer the world. She takes everything in stride, never complains, and is ALWAYS happy. Everything about life excites her. I can honestly say that I try to be more like her to better myself. She might have a disability, but that is just a part of her, not all of her. There is so much more to who Charlotte is. A fun loving little girl with the world at her fingertips!

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Thank you for sharing your sweet Charlotte with us Betsy. First, I have to admit the description of her surgery stopped me in my tracks. Wow. That is not a procedure I even knew was possible. So amazing. Second, I appreciate how much you talked about advocating for your child. It is a new reality when you find yourself pushing back against a doctor for the first time ever and realizing, “Hey… I have more say here than I thought.” I remember the first time I told a doctor that his answer wasn’t good enough and I insisted on additional testing. (I ended up being right by the way.) And I loved that you said, “I don’t listen to doctors or therapists that tell me Charlotte will never be able to do something. I move on to someone who is willing to work with us.” I wholeheartedly agree with that approach. You and your child will respond more positively to people who believe in you. Thanks again Betsy for sharing your story, and please give your sweet girls a big hug from me. 

As always if you or someone you know would like to participate in the special needs spotlight please email me at thislittlemiggy at gmail dot com. 

Have a great weekend!

XO, 

Miggy