Friday, June 29, 2012

Securing a Special Purposed Child

On Good Morning America this week, they did a segment on parents who "leash" their small children to keep them safe while they are out and about. Seeing this issue being debated brought back old memories.

I never thought I'd be a parent who used a child safety restraint...ok a leash. I tried desperately not to be that parent. I was warned by other parents who have children with Down syndrome. "You'll want them to walk more than anything and then you'll wish they'd  just stay put," they told me.

"I won't be like that," I thought. "I will be so grateful when Jaycee walks; I won't wish that." 

A few months after Jaycee started walking, I asked myself why I wanted her to walk in the first place. She started wandering off and not responding to pleas to "stop."  How did this happen?

If given the slightest opportunity, Jaycee would take off. She was not a kid who would run five steps and then look for mom. She would take off and go. She didn't care where we were. Jaycee had no concept of danger. She didn't understand strangers, getting lost, or the possibility of a car hitting her. She just didn't understand.

After much internal wrestling, I found myself accpting the fact that Jaycee had to be secured if we were in public. She had to be in her stroller or on the leash. 

I almost choked while swallowing my pride when I purchased the first leash for Jaycee. I looked for a "Parents who Leash their kids" support group. But, I didn't find it. I felt that if I leashed my kid, people who saw it would think I couldn't control my child, my parenting skills were poor, and I was just a bad mom. Sometimes, I can be my hardest critic. Maybe people thought that, but no one ever said anything to me.

The leashes were a necessary evil for a time. Eventually, Jaycee started to get too big for leashes and we often ended up just getting into tug of wars while trying to go opposite directions. Although our home has been leash free for some time, the safety issue still remains. Jaycee still runs off and tries to leave places without me. I don't know how many times I will have to remind her to wait for me, always hold my hand, etc. before she will understand. I'm still waiting for that day....

In the mean time, when I am out with both of my kids, every move I make is calculated. I try to get Elijah out of the car first so Jaycee can't run off during the short time it takes for me to use both hands to undo his car seat. I hold Jaycee's wrist instead of her hand the majority of the time; it makes it harder for her to suddenly pull away from me. Jaycee is always the first person in the shopping cart or the first one in the car. If I need a free hand to open a door, I never let go of Jaycee's. Elijah will stay with me. Jaycee would use a split second like that to run free. You know it's bad when your two year old yells, "Sissy, where are you going? Come back."

I tell people that I have to give myself a pep talk before I leave the house with both kids by myself.  I say it as a joke but it's kinda true. She has gotten better since she was that curious toddler trying to explore her surroundings. However, it's still an issue that my husband and I deal with everytime we leave the house with her.

So, the moral of this story is: When you see a child on a leash or running away, don't be so quick to judge the parents. If you see me chasing after Jaycee in a parking lot and you are closer to her, feel free to join in the race.
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Monday, June 18, 2012

When your child doesn't speak

A few weeks ago, my niece AJ tried on Jaycee's glasses. "I'm Jaycee," she said. AJ is about 9 months younger than Jaycee.

"OK," I said "You can be Jaycee and Joel can be Elijah." We role played a few minutes. When AJ started to speak, I stopped her. "Jaycee doesn't really talk remember." I decided this would be a great teaching moment.

She shook her head and covered her mouth. AJ loves to talk, so this was a challenge! After a few minutes, she said "Being Jaycee is hard."  Bingo!

Jaycee is 6 years old but can only say about 10 words. Most of them are simple words like "papa" or "mama." Problems associated with Down syndrome cause delayed language. Jaycee's language is considered really delayed even for Down syndrome. She has an additional problem called childhood apraxia of speech. The neural pathways from her brain to her mouth are not strong. She desires to speak but it is extremely difficult for her mouth to produce speech like any other kids. If you think about how complex producing speech's a wonder anyone can talk.

Some speech sounds are produced with the lips, some with the tongue forward, some with the tongue back, some require nasality, some are voiced (g), some are voiceless (k), etc. etc. All these different movements are not innate in a child with apraxia. They must learn how to produce a sound or a word (using cards, mirrors, maybe a hand moving their mouth to the right spot, etc) and repeat them until the pathway is set and "remembered." Jaycee's brain automatically remembers how to say "mama" now easily. On the other hand, "dada" is very inconsistent. Sometimes, she'll try to imitate dada but it comes out "mama". Other times, her tongue is searching for the right spot and she just makes a grunt noise. The point is, she desires to speak, but it is really hard and frustrating for her.

Fortunately, Jaycee has her communication device and sign language to communicate with us. She can use those methods to label objects or people, answer very simple questions (when she wants), request what she wants to eat, drink, watch on tv, and get my attention. 

Still, there are times when I find myself saying, "I wish she could just talk." There are times she literally laughs out loud when she's asleep. I would love to know what she's dreaming about. There are times when she's dancing to the music in her head. I wonder what song she's thinking about. I'd sing it for her. She's attempted to grunt out "I love you" and she has said it (at my request) on her talker. But, I wish it would come out of her mouth like my son. When she's sick, I would love to know what hurts and how bad. I would love to know about anything she's done when I'm not with her. Whether it's at church or school, she can't tell me what she has done. I'm left asking her my usual question, "Did you have fun?" She usually answers yes or no with a head shake.

So, when your child doesn't speak, its important to have all those other communication methods. Whether it's a hug, a sign, a communication device, a wave, a facial expression, or one of her made up gestures, it allows me to learn about her. I'm constantly looking for those little insights.

Whenever she does say something new, it feels like a miracle. She started saying "amen" out of the clear blue this year and has managed to keep this word in her inventory. Jaycee started saying "mom" to mean grandma and "mama" for me. It's a step forward. It's something to get excited about. It gives me hope that one day she'll be able to tell me all of those things I want to know.

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Tuesday, June 12, 2012

So long teeth...

2 baby front teeth + 2 permanent front teeth= 2 too many teeth present 

I remember anxiously awaiting for Jaycee's slow to erupt baby teeth to come through a few years ago. The last few months, I have been wanting 2 of them to fall out. Funny how your feelings change in these situations.

After two heart surgeries, teeth being pulled seems like a small procedure. Still, I woke up today with a small knot in my stomach. I know Jaycee will be scared today and there is no way to prepare her well for it. 

Last night, we put Jaycee to bed and I tried to explain to Jaycee what would happen before we prayed about it. "Jaycee, you have 4 teeth right here. You should have 2. You are going to the dentist tomorrow and she is going to take 2 teeth out. You will be fine." Jaycee opens her mouth and points to her teeth.

Ok, she knows we are talking about her teeth, but who knows what she got out of my little speech.

This is when her developmental delays are an advantage. She doesn't get worried about what will happen. She's not asking for details.  I'm the only one who is mulling over what is going to happen.

Sidebar: Ever since I got my Fearless shirt from our church chic night meetings, I have been wearing it when Jaycee has a doctor's appointment or some other potentially stressful appointment. The front says "fearless" and the back says "fear not, for I am with you. -God" Our meetings have been about fear, a subject I'm always needing wisdom on. The shirt is a good visual reminder for me not to be afraid.

I had my fearless shirt on as I walked Jaycee down the hall of the dentist office. She sat in the chair on her own. This is a good start. The bib was placed around her neck. For the first time ever, she leaves it on. Then the nasal gas mask needed to be placed. This is the part I was dreading. She doesn't understand what is happening and why. She looks scared. Like in so many other procedures, I help pin Jaycee down. The gas is on and Jaycee is calm in an instant. It's magic gas! 

In no time, Jaycee's baby teeth were in an envelope and it was over. Could it go that easily? Well, not so fast...As I was paying, Jaycee left my side. I thought she was going to play with toys in the lobby but no. I got to her just as she shut the door and was standing on the sidewalk. No matter how distracted I may be by what is happening, I can't let my guard down for a minute. I broke my golden rule with Jaycee while we are out, keep her confined or hold her hand.

It's over and done. Thank God everything went good. In case you are wondering, Jaycee will not be getting a visit from the tooth fairy. She doesn't know she's missing anything but my bank account does. Haha!! Until next time..

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Sunday, June 10, 2012

Here I Am!

Well, I have been thinking about starting a blog for some time now. Thinking about it doesn't actually get anything done.

So, welcome to my blog I'm calling "A Special Purposed Life." This is a phrase that came to me while I was sitting in a church class last year. The phrase had a significant meaning to me at the time. When you have a child with a disability, "special needs" is often used to describe the child. It's nice, gentle wording that people automatically understand. I don't have a problem with the "special needs" terminology. Trust me, it's much better that a lot of things my daughter has been called.

But, in church life I have wished that there was something else I could call her. "Special needs" means she has needs that are different from others. It implies she is lacking something, which is an accurate description. Jaycee is more like a 2 year old (at best) than a 6 year old. Yet, in all that she cannot do, there are many things that she can do. Most people just don't take the time to find out these hidden gems in her life. Her life has a value and purpose, though sometimes difficult to see because of her many needs. She is here for a reason.

Jaycee is no different than any of us. We are all here for a purpose. Jaycee's purpose is a unique one much different than the majority of people around her. She indeed is special for that reason. So, by saying "special purposed" instead of "special needs" it sends a slightly different message. Jaycee's life is not defined by her many needs. Her life is defined by the unique purpose she was created for.  

Thanks for reading. I hope to share with you my experiences and thoughts as I journey through life with my special purposed daughter. 

**I urge you in the sight of God who gives LIFE to all things...1 Timothy 6:13
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