Autism?

Wow! So much going on. I have to remind myself to take a breath sometimes.

When McKenna was released from her IEP in 1st grade, we hoped she would not need one again. But as time went by, we saw that her issues were still impacting her on a daily basis. So last week, we had an ARC meeting with the school to discuss an evaluation for another IEP. While this breaks my heart, I am also pleased with the progress that was made.

McKenna was diagnosed with sensory processing disorder when she was very young. She was also diagnosed with ADHD a couple of years later. I admit that I have had moments of skepticism about her diagnoses, but something always brings me back to reality - like the way she struggles to look me in the eye or pushes me away when I try to hug her at night when I tuck her in. I see her walking on lines in a parking lot and it is hard to know it is not some sort of child's game but a desperate, uncontrollable need for her - often without regard to her own safety. I also feel helpless when I see her spending so much time lining up and organizing certain things. Even when she is exhausted and needs to sleep, she often cannot relax until she carefully arranges everything on her bed. This began when she was a toddler. She would spend 30 minutes arranging and rearranging her blankets before she'd even attempt to fall asleep. There are just so many other things too - things that may seem so small but have such a tremendous impact on every aspect of life for McKenna and for Jason and I. Some days are better than others.

For years, we have suspected Asperger syndrome and McKenna was unofficially diagnosed with it via a telephone conference with a leading local child psychologist a few years ago. Our pediatrician recommended an in-depth evaluation by the Weisskopf center in Louisville at the time. We tried to make that happen but found out insurance would not cover it. The evaluation is very thorough and involves several days of lengthy testing. The bill would have been VERY high. So, we could not proceed. Now, with a different insurance and also the suspicion of OCD by McKenna's current therapist, our insurance SHOULD cover most of the evaluation. We have discussed this with McKenna's pediatrician and are just waiting on her referral to a developmental pediatrician. Once we see the developmental ped., we should be able to get on the list for an eval. at the Weisskopf center. The current waiting list time is 8-9 MONTHS. So, this is going to take a while. But we are hopeful that a thorough eval. will help us know how to proceed with treatment.

In the meantime, the school will do their own evaluation and hopefully McKenna will once again have an IEP and be able to get the help that she needs at school. Academically she is doing very well. Her reading scores are in the 97th percentile overall (99th in many areas), and this is quite impressive since she is the youngest 3rd grader in her school. McKenna is also well-behaved and well-liked at school. But all of this does not come without struggle. In fact, her high scores may be yet another indicator of Asperger syndrome, as it is a "high-functioning" form of Autism. Hopefully the interventions that the school system is working on will help McKenna struggle less and enjoy school more. With all that we've had going on over the last year and a half, we have not been able to give McKenna's issues the attention they needed. We're trying now to make up for that and be sure that McKenna gets the treatments she needs. Watching her struggle isn't easy for us, so I can only imagine how it must be for McKenna.

Please keep McKenna in your prayers.

McKenna's 8th Birthday!

Today, my "baby" turns 8! It's hard to believe it has been 8 years since she was born. So much has happened in 8 years. The day McKenna was born was one of the happiest days of my life. She sure is growing up, but she's still my little "Pickle." That has been her nickname since she was very young.

On Saturday, we had a birthday party at MeMa and PePa's house. Several cousins and friends came to celebrate with McKenna. Some of the kiddos went fishing and also had a blast walking in the mud.

Stubborn Mr. Lincoln

It seems that our little Mr. Lincoln decided to hide yesterday when it was time for his fetal echo. He was in the tornado drill position, and it was just impossible to get a look at his heart. So instead of a fetal echo, we had a very thorough biophysical profile (a very detailed ultrasound that checks every piece and part). EVERYTHING else checks out perfectly. Mr. Lincoln had a nice strong heartbeat, but we just didn't get to see the heart. He is not nearly as active as my girls were in utero. He just seems to hang out and take it easy. My girls were always all over the place during ultrasounds. Not Lincoln.

In a little less than 3 weeks, we'll go back to attempt the fetal echo again. I'm a little disappointed that we didn't get to see his heart yesterday, but I am so glad to hear everything else looks great.

Please keep us in your prayers, as my back problems are worsening and I found out physical therapy isn't an option due to issues with insurance.

Baby Lincoln

We had our 20 week ultrasound today (20w5d). Baby Lincoln (yes, definitely a boy) seems to be perfectly healthy. I certainly took that somewhat for granted with my first two and with Gabby, up to the point where I heard, "Your baby has major heart defects." But at today's ultrasound, I took nothing for granted. I held my breath through the ultrasound and asked the tech about a million questions. God blessed us with a very compassionate tech who took her time and was extremely understanding of our situation. When I saw that perfect heart with four perfect chambers, I couldn't help but get tears in my eyes. Jason says the tech was almost crying as well, but I didn't notice. I was too fixated on watching my little boy and feeling just a bit of sadness that Gabby's heart didn't look that way here on Earth. But there is no time to dwell on sadness; we have been blessed in so many ways. Next week, we'll have a fetal echocardiogram just to take a very close look at the heart because of Lincoln's increased risks, but I am very optimistic about what that will show. It was so wonderful to be able to tell McKenna and Olivia that their baby brother's heart is healthy. They know the importance of that all too well.

Lincoln has no markers for Down syndrome. While some might think a pregnant mother would be happy about that, I have to say that I am neither happy nor sad. I am so fortunate to realize that Down syndrome is not something to fear or dread. The worth of a person is not measured in chromosomes. I would have been thrilled to welcome another beautiful baby with Down syndrome.

Today we bought Lincoln's "going home" outfit, and for the first time I was not scared of getting something for him. I'm not quite ready to convert Gabby's room yet, but I know it will be possible in time.

I will start physical therapy for my back very soon.

Made in His Image

Today I came across a blog post from an online acquaintance of mine, and I just wanted to share it. Susanna is a mother of 10, and her newest baby girl has Down syndrome and some of the same heart issues Gabby had. Her baby girl had her heart repaired and is doing well. When her daughter Verity was only 4 weeks old, Susanna wrote about her struggle with others' views of Down syndrome. Here is her beautiful blog post - a post that hits so very close to home for me:

"Since Verity was born four weeks ago, and came home from the hospital, she has spent most of her time abiding safely in her little home-nest. Her visitors have only added more love to her life.

She has not ventured out into the big world too much.

Several trips now to the clinic where her sweetness is admired. One to Grandpop’s birthday party where she finally got to meet the aunts and uncles and cousins who have accepted her as she is. A jaunt to the pediatric cardiologists’ office, then to the hospital, where she fit right in among other needy children and their caregivers.

My most painful fears when we heard about Verity’s Down syndrome were based on the rejection that our precious baby would receive from others. It hurt with a burning, stabbing pain to know that others would see her as a mistake. That they would look on her and despise her.

But I’ve seen very little of that in her first month. It’s easy to feel lulled to unreality while being cushioned in the safe zone. It’s not often that I am jolted back to the cold reality of that wide, wide world.

I did feel intense anger the night I watched Verity labor so hard to breathe, rage that there are bullies who have chosen to let their child’s heart defects go untreated because they have Down syndrome.

There was The Nurse With the ‘Tude, which may or may not have been related to Verity’s Down syndrome. But for the most part our sweetie has been surrounded by love and acceptance. The ache receded from my heart.

Now several encounters over the past few days have re-opened that bitter wound. And it turns out that the ugly lies are not all out there in the secular realm.

I’ve been jolted by the reality that many Christians still think about babies from the world’s perspective. They accept the world’s terms. When they say a child is perfect, they do not mean, “Fearfully and wonderfully made, period.” They mean, “Photogenic, gifted, easy, no extra needs.” Their words betray their true beliefs.

I was forced to face the fact that some of my Christian sisters pray against having a child like mine. That many of them think, “Yay! We got a PERFECT, BEAUTIFUL child who is SHARP AS A TACK, and not the kind you got!” And that their baby born without special needs is a miracle, but my baby with Down syndrome is what? Not a miracle, I guess, huh? They do not want a baby who needs more of them than they want to give.

I’m realizing the hardest part for me about the Down syndrome thing is this–other people’s rejection. Other than that, what is the big ‘ol hairy, scary deal? Really. A child who looks different and learns differently. So? For a home educating mother of many, this looks like an opportunity for learning something valuable that we wouldn’t otherwise learn.

But now I know that there are Christians who think about my needy child as though she was a burden to bear, a tragedy, a sad circumstance, a hardship, a bitter cup to drink, a disaster on a level with a house fire or a severe drought or a bank failure. That’s why it hurts inside of me, a mother whose soft, fragrant wee girlie is a human being made in God’s image, when she is discussed as though she were a tragic thing.

Some would tell me, “Woman, grow a tougher skin. There are plenty of people around who will accept and love your baby. Focus on the positive and let those other people be wrong if they want to be. They don’t know what they’re missing.”

That may work for some. And some may not struggle right at this spot where I am. They may hurt for other reasons, or not hurt at all.

But that isn’t the way God designed me to function. And this is the pain He has allowed me to feel. I cannot just ignore the negatives. I have to do something with them, find out where they fit with the truth that God has revealed in His Word. What is the truth that will counteract these lies? I don’t want to grow tougher. I want to know what is the godly and gracious way to respond, both to the wrenching hurt inside of me, and outwardly, toward those who are deceived?

“Then a dispute arose among them as to which of them would be the greatest. And Jesus, perceiving the thought of their heart, took a little child and set him by Him and said to them, ‘Whoever receives this little child in My name receives Me; and whoever receives Me receives Him who sent Me. For He who is least among you all will be greatest.’”

I had always pictured this scene as Jesus with a typical kid on His lap. I had never pictured Him with a child who has a face that proclaims her special needs to the world. A face that will never be acceptable to some people, no matter what pretty hair bow she wears on top.

What does it look like in real life to receive Jesus? Photogenic social acceptability?

“He has no form or comeliness; and when we see Him, there is no beauty that we should desire Him. He is despised and rejected by men, a Man of sorrows, and acquainted with grief. And we hid, as it were, our faces from Him; He was despised, and we did not esteem Him.”

So to receive Jesus, we must be willing to receive one who is despised. We must be willing to receive one who will suffer rejection, who will not be esteemed.

“Therefore Jesus also, that He might sanctify the people with His own blood, suffered outside the gate. Therefore let us go forth to Him, outside the camp, bearing His reproach.”

Jesus, we love You. We welcome You. If this is where You are, then this is where we want to be, too.

And oh yes…for those who do the despising…

“Father, forgive them, for they know not what they do.”

20 weeks! Half-way there!

I can't believe I'm already half-way through this pregnancy. It is going so fast. Little Lincoln is kicking and rolling around in there and has had hiccups a few times. The girls are already making big plans for him and talking about what they're going to teach him. They enjoy talking to my tummy, especially McKenna.

Next week (Wednesday) I will be having my 20 week ultrasound. It is just a regular scan in which they will look closely at all of Lincoln's organs, systems, etc. I know they will be looking closely at the heart. Since Gabby also had a submucous cleft palatte and the chances for Lincoln to have a palatte issue are quite high as a result, they will also be checking that. We are hoping and praying for a wonderful ultrasound with no health concerns found.

In a few more weeks, I should be having my first fetal echo with Lincoln to take a very close look at the heart. Beyond that, I will probably be monitored a little more closely because of my history of placental failure and extremely low amniotic fluid. Since Gabby was a preemie and was transverse, that also adds a few red flags. And I had a c-section only 13 mos. ago, so that is a concern. But at this point, checking for all these things is just a precaution based on probability.

This pregnancy continues to be very hard, physically and emotionally. I am hoping to start physical therapy for my back soon. I am getting to that point where I will need the cane many days, and I am hoping to keep it from getting as bad as it has in the past. When I was pregnant with Gabby, there was so much going on that physical therapy wasn't an option. This time, it should be possible. It helped a little when I was pregnant with Olivia, so I'm hoping for the same results this time. Not being able to get around, bend, or lift is just not very convenient when trying to take care of the girls and get housework done.