Some Struggle Is Good

"When it comes to parenting, more isn't always better. When you give too much to your children you're not allowing them to feel the satisfaction that comes from making life better for themselves. Some struggle is good. Encouraging our kids to earn their privilege through hard work is one of the greatest gifts we can give them" - Dawn Raffel, Reader's Digest

I tore this quote out of a Reader's Digest the other day while I waited for an oil change. When I read this, I wondered if I am preventing Tennyson from reaching her full potential. It spoke to me because it's something I have been struggling with as a mom lately.

I want Tennyson to be able to do more than blow kisses and kick her feet on command.

I do everything for Tennyson. I carry her everywhere. I change her clothes. I change her diapers. I place toys in her hands. I manipulate her tiny fingers around them and shake them in hopes that one day she will see she can do it without my help. I try to explain what I'm doing while I help her so she learns ("let's put your socks on...where do your socks go?...they go on your feet...where are your feet?....there they are!"). I'm sure if she could talk she would tell me to be quiet.

How do I help Tennyson feel proud of herself? How do I empower her? What skill can I teach her that she can do without me? She does not sit, walk, stand, or talk yet, but she's smart - and I'm not just saying that because I'm her mom. 

I realize in the neuro-typical world, people judge a person's intelligence by their physical and verbal capabilities. Before Tennyson, I did too. I didn't know any better.

What I also realize now, is this world moves much too fast for Tennyson to keep up. She tries to do what you ask of her. She wants to interact with you. All too often, though,  people move on to the next action just as she starts to process the first. A beautiful mind, in a body that simply won't cooperate. Oh, what I would give to know what she is thinking.

Her lack of skills is not for a lack of trying by any means. She's been in therapy since 3 months of age. She still receives 8 therapies a week. She works harder than any child I have ever known. She is beginning to show her own frustration through emotional meltdowns, which gives me a whole new set of worries.  

Special needs parents know what I mean when I mention the importance of taking advantage of a child's young age. That's when the brain is making connections and learning basic skills they will use for the rest of their education. In the beginning, we were told, the hope for Tenn to catch up with her peers was by the age of two. Two and a half years have passed, however, and I still feel like I need more time with her while she's little.

So what do you do to empower your children? I would love to hear some ideas and suggestions from both parents of special needs and typical children. Please share. Maybe I can adopt some suggestions to help Tenn.

Amy - tennsense@gmail.com

Another Hospital Stay

I have so much to write about and it seems I just can't decide where to start. I guess I'll start with an update on Tennyson's hospital stay this week.

Tennyson had an appointment Monday morning with her Developmental Pediatrician. She is one of my favorite doctors that sees Tenn. She helps with our adaptive equipment referrals as well as referrals to new doctors we want to visit. She gave us a referral to Duke Children's Hospital to see a Hematologist (blood) doctor. Duke is currently conducting a clinical trial where stem cells from cord blood are reinfused in hopes of healing damaged parts of the brain. Stem cells are cells that don't have "assigned" jobs yet, so they can transform into any cell the body needs. Patients in the study are showing positive results.

During the appointment, she took Tennyson's temperature and it was 102.3! That's a high temperature for Tennyson. She had been fighting a nagging cold for over a week. When she saw her temp, she said she wanted blood work and a chest x-ray. We headed down to pediatrics to get tylenol and motrin to bring the fever down quickly.

The blood work showed alarming levels of white blood cells (the cells that fight infection). A normal number is around 10,000. Tennyson's level was 33,000! To top that, the chest x-ray showed a fractured rib. I was shocked - to say the least!

She was admitted immediatley and started on an I.V. antibiotic called Rocephin. Her body responded well to the antibiotic and the next day bloodwork showed her white blood cell count had dropped to 28,000; still very high. We stayed overnight once more while she continued to receive the antibiotic every 12 hours.

We could not understand how she could have a fractured rib. We are incredibly cautious of who has time with Tennyson. Our minds immediately tried to figure out how this happend. It was awful to hear the word "abuse" thrown out there as a possibility. We said we wanted to see the x-ray. Once we were shown what was supposedly a week old healing fracture, my husband and I could not see what they were seeing. They said they wanted to do a skeletal survey to see if there were any other fractures, which we cautiously agreed to. We hate exposing Tenn to any unnecessary x-rays, knowing she will have to have regular x-rays for the rest of her life to monitor her joints and hips.

When Tennyson and I arrived at the radiology department for the skeletal survey, I asked how many x-rays she would be getting. The technician said about 21. I said, "absolutely not". I told him I wanted to talk to her doctor or the radiologist. I battled the emotional side of me that said, "go ahead and show these people that Tenny is not abused". Then the logical, protective Mom side of me said, "Tennyson should not be subjected to 21 x-rays. Tenny does not need these x-rays". I'm so glad I listened to my gut feeling.

After just 2 x-rays (not 21!), the radiologist concluded her rib was NOT fractured. She has a blood vessel that runs in front of her rib. So what they thought was a fracture, was a blood vessel - BIG difference!

After the x-ray craziness she had another blood draw. Her white blood cell count was down to 19,000. Low enough to be discharged and sent home on antibiotics. Thank God!

We have a follow-up appointment tomorrow with her regular pediatrician. Her hands and arms look like they used her as a pin cushion, but other than that she is doing great!

tennsense@gmail.com

Amy