Saturday, February 28, 2009

A Milestone Moment for Mantha

I didn’t get a chance to post this yesterday (Friday, February 27, 2009) but it was a really big deal around here. Mantha did 3 pages of her math book *completely independently*!!!! We are currently using Math U See’s Primer level two days a week and Critical Thinking Press’s Mathematical Reasoning Level A two days a week. In Theory we would do Singapore Math Earlybird series 1B on Fridays. We haven’t quite got that one worked in yet. Because of her needs, she really needs multiple approaches to learn concepts, thus the multiple math programs.

First, before the details of the big milestone some background to help explain *why* this such a big deal of us.

Last week Mantha finished up the Beginnings level of Mathematical Reasoning. I’ve had the next level since last June when I picked it up at a home school convention. When I purchased that level, I was very hesitant that she would be able to use it as written as it starts off with tracing numbers. I just planned on skipping the pages that required her to trace numbers.

We’ve been working on her fine motor skills quite a bit. She has a strong desire to learn to write but she did not have the skills do so. Amazing how I took for granted the ability to *TRACE*. So we’ve been using a Kumon workbook called “My First Book of Tracing”. It looks like a book of mazes. Her job is to follow the path from one point to the next without leaving the path. She has enjoyed this book and it has helped her develop the motor skills she needs.

All that work with the tracing book has prepared her to begin tracing letters and numbers that have dashed lines. So we started the new “Purple” workbook this week. Because several of the first pages are learning to write numbers I only scheduled 1 page per day and I scheduled us to also do 1 page of MUS a day. Neither page has very many problems. We did this Monday through Wednesday. On Thursday I was very tired. I chose not to “do school” with Mantha. She however, was determined to do school. She pulled the purple workbook of the shelf and sought help from BooBear. She did one page of tracing 5 and 6 with her sister sitting with her.

So up to this point, Samantha has never truly, truly been independent with her school work. Yes, she done pages with next to no help but always required someone to explain the page to her and to sit near her. Over the last few weeks we’ve been getting a bit more independent. Mom will explain the page, watch her do one to make sure she understands and then get up from the table to do something else (but still be in the area). Mostly this has been with the above mentioned tracing book and with her Building Thinking Skills Primary book also from Critical Thinking Press.

Now yesterday she crossed that most necessary bridge. The bridge that we often take for granted with our typically developing healthy children: the bridge of independence. While I was on the phone, and her sisters were otherwise occupied, Mantha pulled the “purple math book” (that’s her name for it) off the shelf. Found the page where she had left off and proceeded to do 4 pages of math. These pages were different from we had been doing but just looking at them she could figure out what she needed to do. The first page required her to trace the numbers 1 through 5 and then match those numbers to a picture with the correct number of objects. The next three pages had three problems each on them. Each problem had a picture of a certain number of animals or objects and three number choices below. She needed to trace the numbers and then circle the correct the number.

We have been working for such an incredibly long time on number concepts. It is indescribable to be able to see that it finally clicked and to see that her motor skills have gotten to the point that she CAN trace following dashed lines. All that work, combined with her fierce determination to be like her sisters, came together and for the first time she did school work 100% independent.

She was so proud of herself that last night at a church gathering she had to tell *everybody* what she did: “I did it all by myself”

Yes you did sweetheart and Mama and Daddy are so proud of you!!!

Wednesday, February 25, 2009

Mantha's Story 1: The Beginning of the Beginning part 1

I am going to start at the beginning of the beginning. On January 2nd 1997, BooBear, John and I had gone to Leighton Barracks for shopping and lunch. John was active duty army and stationed in Germany. We lived in Giebelstadt, part of the 417th Base Support Battalion that included Leighton Barracks in Wuerzburg, Giebelstadt and the base in Kitizigen .

We were at Burger King. BooBear had milk with her kids meal. She didn’t finish it so I picked it up to finish it. I got it up to my mouth and I had to put it down. I could NOT drink it. I was sick to my stomach just thinking about drinking the milk.

John asked “are you pregnant”. I replied that I couldn’t be or that it was too soon to know. Well, just in case we stopped again at the PX (Post Exchange) and picked up a pregnancy test.

I don’t remember if I took it that afternoon or if I waited until morning. I do remember that John was home. I took the test and watched as it did NOT develop two pink lines. I was disappointed. I assumed the test was negative, after all, when I took the test with BooBear the two pink lines showed up IMMEDIATELY as I watched! I put the test down on the edge of the sink and went to tell John that the the test was negative. He too was disappointed as we had been trying for nearly a year to conceive. I had to run back upstairs for something and grabbed the test to throw away. I looked at again and I couldn’t believe it. There was a very faint second pink line. I wasn’t even sure that it was really there. I called John and he looked at it. Yes, there was two lines. But I couldn’t be pregnant could I? I think I ended up taking a total of 9 tests over the next couple of weeks. I finally was able to get to the base clinic and have it confirmed. Yes, I was indeed pregnant. Due Date: September 12, 1997.

Strangely around 8 weeks I noticed that I could NOT fit into my clothes. John jokingly asked me if I was having twins. The morning sickness was pretty strong but my dr kept reassuring me that it should taper off by 20 weeks. (I kept thinking.. really? It didn’t with BooBear. It got better but I had all day long, all pregnancy long sickness with her!). The doctor dismissed the idea of twins. I was showing so quickly because it was my second pregnancy. I wasn’t measuring large for date. I became more and more convinced that I was carrying twins. It was just a feeling that I had. And EVERYONE kept asking me “are you having twins?” I just answered, well my doctor says no, but I think it’s possible.

A few days before my routine “20 week” ultrasound (which I had at 21 weeks), I was reading in bed. John was trying to sleep. I woke him up. I just felt the baby move. Not a big deal. I had been feeling movement for several weeks now but this was different. I felt movement on BOTH sides AT THE SAME TME. I told John that we had two babies or an Olympic swimmer!

To be continued…..

Friday, February 20, 2009

Cute story of the week

I’ll interrupt the installments of Mantha’s story with this ‘cute’ story. We were getting dinner set up the other evening, and one of her other sisters mentions she’s hungry. Now over the years, I’ve ‘teased’ them by responding ‘nice to meet you’ (yes I know, real original, but I enjoy it). Mantha hears this and starts in with ‘you’re hungry? I’m hungry too. Nice to meet you, hungry’ and proceeds to shake her sister’s hand. It was just too cute, and it shows some of the enjoyment we have around our house.

Wednesday, February 18, 2009

About Mantha

Since I posted about our "incident" yesterday (was it only yesterday??!!) I thought I better get some information on here about who she is, but first, I just have to share about this morning's breakfast.

Today's menu: scrambled eggs and toasted English muffins. She did NOT serve herself but did agree that the amount serve to her was "ok". (as in Mantha is this enough eggs? yes. Is this too much eggs? No.) During breakfast she made NO complaints and very proudly showed me her nearly empty plate. Now I don't care if she is a member of the clean plate club. Getting her to eat it all is NOT my goal. Teaching her to take responsibility for her actions and her choices, that's my goal. I was just tickled though that we had such a *pleasant* breakfast.

So who is this little girl? Mantha is 11 years, 6 months and 15 days old. She is a twin, the older one, and has an older sister and a younger sister. Her twin, the younger one, is "typically developing" and is a healthy 11 year old.

Mantha was born with Hypoplastic Left Heart Syndrome. It means that the left side of her heart did not develop properly. It's syndrome which means a collection of "defects". She was born with other congenital heart defects as well that are not usually associated with HLHS. She was also born with DiGeorge Syndrome. This is a genetic disorder affecting the 22 chromosome, 22q11.2 micro-deletion. Most of her "mini-diagnosis" stem from DiGeorge. But DiGeorge and HLHS is only 2/3 of the equation. Sometime in the womb, Mantha suffered a major stroke. It is believed that she had more than one. I believe she may have had one shortly after birth as well. At times it is hard to tell if the issues are due to the severe brain damage from the multiple strokes or if it is the "associated learning disorders" of DiGeorge.

We believe that Mantha is a miracle. If she'd had that stroke *after* birth, it most likely would have killed her. I am NOT a trained medical professional but even I could see that something was terribly wrong with her MRI. Because of her small size (she weighed 4lbs 5 1/2 oz at birth) and other medical issues we were not even sure she would survive her first open heart surgery. We were told she only had a 50% chance of living to age 5.

I'll share more details in installments that share the many procedures she's been through.

Tuesday, February 17, 2009

Learning Patience

I know that we have to get Mantha's story up. Without the background a lot of what we are learning is meaningless but since we have this blog and since we had a "Monday" (yes on a Tuesday) I wanted to post about today.

Parenting is a challenging and daunting task even under the best of circumstances. Parenting a child who has medical issues, developmental delays, and learning challenges goes beyond challenging and daunting. It goes beyond overwhelming, tiring and yes even frustrating. How do you take into consideration "special needs" without coming across as giving "special privileges".

How do you hold her to the same Godly standards as her sisters without violating the scripture that commands parents to not exasperate their children?

So what has this got to do with learning patience? I believe the Lord is teaching me patience as I learn how to parent Mantha. I don't feel patient. I feel frustrated when she screams and screams and at the same time I Know I can NOT back down. I can not let her think that screaming is acceptable. I can NOT say "oh well she doesn't understand" because she does! Maybe she doesn't have the same reasoning skills but she knows and *understands* that she is not getting her own way and that is why she is screaming. She wants her own way and she understands that she is NOT getting what she wants. It's a temper tantrum.

It has taken us YEARS of praying. Years of seeking the Lord and asking Him for wisdom and discernment. Wisdom for us to know when she understands and when she doesn't and discernment to know when she is manipulating us and when she is frustrated.

So this morning, she pours herself a second bowl of cereal (yea! We're gaining independence and the skills necessary to take care of herself.) and then decides she's "stuffed" and won't eat it. (uh, no go. You served yourself and the rule is if you take it, you eat it).

Patience, I think I'm starting to get it. Maybe. She screamed. She cried. I cried out to the Lord to help me. I realized that despite my emotions, I did have some measure of patience. It takes patience to see the BIG picture and not just the moment. It takes patience, to stop and pray and not to react with my gut emotion. (Which would have been to scream right back at her. *sigh* she does know how to push my buttons!) Sure it would have been easier to give in and not hold her to the same standards as her sisters but I don't believe that to be in her best interest. Today my patience has been tried. I didn't feel patient. But do you have to *feel* patient to *act* patient? I was able to calmly, restate the rules. I was able to take and spend the time working on this character issue. I think I'm beginning to see the Lord's hand as He molds me to be conformed to the image of Jesus.

When all was said and done, I held her close on my lap. We snuggled and then she went and ate her required 6 bites. I left the table, satisfied that she had obeyed. A few minutes later, a very happy little girl brought her EMPTY bowl to me and said "Look mama, I ate it all". Thank you Lord for granting me the patience to persist in seeing it through to the end.

Saturday, February 14, 2009

the view from my side

I'll be contributing to this occasionally with things from the daddy's perspective. Don't worry though, it'll be the same wonderful learning about life from our very special daughter. As my wonderful wife stated below, don't forget to tell the one you love 'happy valentine's day'.

Valentine's Day

We thought it would be fitting to start a blog for Mantha on Valentine's Day because February 14 has been Congenital Heart Disease Awareness Day. We'll post Mantha's story to date in installments but wanted to share this bit about about this morning.

Mantha overheard me ask her older sister to get out the "Mother's Day pot". That's the pot that daddy gave mama for Mother's Day last year. Mantha misunderstood and thought that today must be Mother's Day and she was all set to celebrate Mother's Day.

She was gently corrected by her older sister who told her that today was Valentine's Day. Valentine's Day is the "day you tell people you love them". There was a pause and then Mantha responded with "[BooBear] I love you". A few minutes later, Mantha came to find me. She surprised me by walking into my bedroom and saying "Mommy, I love you". I found out a little later that Mantha was just doing what you're supposed to do on Valentine's Day. Tell the people you love that you love them.

Happy Valentine's Day and be sure to tell your loved ones that you love them!